When Benjamin Kwarteng sustained a cervical spinal cord injury in 2008, his life changed instantly. Today, he’s an entrepreneur, mentor, and disability advocate who is focused on creating practical solutions that encourage independence, dignity, and inclusion.

In Part One of my conversation with Ben, we talk about his spinal cord injury, the realities of navigating the world as a wheelchair user and what Ben refers to as “disability privilege.”

PROFILE SNAPSHOT

• Name: Benjamin Kwarteng

• Superpowers: Perseverance, optimism and turning barriers into opportunity.

• My Favourite Ben Quote: “Your circumstance is not bigger than your character. We often look at our circumstance and we might let it overshadow who we are as individuals but we need to realize that at the end of the day if you allow that to control who you are, you will fall into the victim position.”

THE INTERVIEW (edited for clarity)

Melissa: For readers who may not know your story, can you tell us how you acquired your spinal cord injury?

Ben: In November 2008, my sister, my nephew, and I went back to Ghana. When we arrived, our luggage was missing, and we were told the following day to retrieve them. On our way back to the airport, I sat at the front of the taxi, my uncle sat behind me and my sister sat behind the driver. From my uncle’s house to the main road, the road had large potholes, which made the ride bumpy before we reached the main road.

When we got to the main road, the area was busy with multiple roadside restaurants, people playing loud music, and smoke in the air from what looked like someone burning things on the side of the road. We drove less than a kilometre before approaching a bridge.

Those were my last memories of being in Ghana. I woke up a week later in Marseille, France.

I was informed that I was in a vehicle accident, and I was flown from Ghana to France to undergo surgery for my injuries. I sustained a spinal cord injury that left me a quadriplegic, leaving me completely paralyzed from the neck down. The injury completely changed the course of my life.

* Read more about Ben’s accident here.

Melissa: When we first spoke, you introduced me to the term "disability privilege." I've been injured for 19 years and have never heard those two words used together. What experiences, both challenging and positive, led you to see disability through that lens?

Ben: When people hear the term “disability privilege,” many are surprised. After all, living with a disability often comes with significant challenges, barriers, and disadvantages. As a quadriplegic living with a spinal cord injury for over 18 years, it hasn’t always been easy. There have been many moments of frustration.

This comes from a person who has been denied service simply because I could not physically open my bag to take out my wallet and pay for food.

I usually meal prep for the week so I know what I’m eating, but sometimes I want something different. One day I stopped at a Subway restaurant. As I approached the entrance, I saw there were stairs leading up to the door, and there wasn’t an accessible button to open it automatically.

I waited for someone to pass by who could help me. The first person I asked simply walked past without acknowledging me. When another person approached, I said, “Excuse me, ma’am, could you please help me open the door?” Before I could finish, she clutched her purse and replied, “Sorry, I have no money,” then walked away.

I’m used to experiences like this, so I waited again. A young woman and a man approached and asked if I needed help opening the door. I said, “Yes, please, if you don’t mind. Could you also ask one of the employees to come over? There’s no way for me to get up the stairs.”

When the employee came outside, she took my order and then asked how I wanted to pay. I said, “Could you please open my pouch and take out the money?” She replied, “Sir, I can’t go into your bag. Can you put it on your lap so I can pick it up?” I explained that I didn’t have enough movement to do that. She apologized and said she wasn’t allowed to go into my bag. She suggested I come back with someone who could help me. I thanked her and went home.

One time I was sitting in a park talking on the phone when it slipped from my hand and fell to the ground. I noticed a woman sitting on a nearby bench, deeply engaged in a phone conversation. I approached her and asked if she could help me pick up my phone. To my surprise, she got up and ran away from me. I believe she may have thought I was trying to harass her, but I also understand that, from her perspective, she may have felt uncomfortable or unsure of my intentions.

These are the kinds of moments that happen when people with disabilities are misunderstood, overlooked, or even seen as a threat simply because of how we look or move through the world.

On the other hand, many people have stepped in to help when I didn’t even ask. When I get on the streetcar, people often lift the seats so I can position my wheelchair comfortably without me saying a single word. Some have opened doors the moment they noticed I was struggling. Others naturally understand the situation and are more than willing to help without hesitation. There have been times when my wheelchair has broken down and complete strangers have helped push me six blocks all the way home.

Another example of what I mean by disability privilege is accessibility accommodations. There are times when a person using a wheelchair may be allowed to bypass a long line because standing for extended periods simply isn’t an option. While some people may see this as special treatment, it is actually an accommodation that helps ensure equal access. There have been times when I’ve refused that accommodation because I could sense the frustration of others waiting in line.

But let’s not forget the hidden opportunities that can come with disability. These experiences can make a person’s perspective more meaningful to others because they’ve lived life from a different point of view. They can also create a deeper sense of empathy, resilience, and understanding that shapes how we see the world and how we advocate for others.

I also recognize that there are certain supports and accommodations available to people with disabilities that provide opportunities, security, and assistance that others may not have access to. In that sense, there can be forms of disability privilege.

For example, in Canada, people with disabilities may receive financial support through government programs. The Canada Disability Benefit and other disability-related supports help offset some of the additional costs associated with living with a disability.

One of the most valuable programs is the Registered Disability Savings Plan (RDSP). It allows people with disabilities to save for their future while receiving substantial government contributions. Depending on income and personal contributions, the government can provide matching grants and bonds that significantly increase long-term savings. For many Canadians with disabilities, the RDSP creates an opportunity to build financial security that might not otherwise be possible.

Travel is another area where accommodations exist. Many transportation providers and attractions offer attendant or companion programs, allowing a caregiver or support person to travel or enter at a reduced cost—or free of charge. These accommodations recognize that many people with disabilities cannot travel independently and should not be financially penalized for requiring assistance.

None of these supports erase the realities of disability. I still rely on caregivers every day. My spinal cord injury affects every aspect of my life—from getting out of bed in the morning to dressing, eating, and managing daily activities. The challenges are real and ongoing. But acknowledging these supports is important.

Melissa: Your optimism is contagious. Do you see optimism as a personality trait, a choice, or something you’ve actively cultivated over time?

Ben: Some people naturally lean toward optimism, but after a life-changing injury, optimism becomes a daily choice. There were certainly moments when I could have focused only on what I lost. Instead, I chose to focus on what remained possible.

Over the years, I’ve intentionally cultivated optimism by celebrating small victories, surrounding myself with supportive people, and finding purpose in helping others by mentoring others with disabilities on how to live with their injury and be fulfilled in life. My faith, my family, my caregivers, and my entrepreneurial projects have all helped me maintain that mindset.

For me, optimism isn’t pretending that life is easy. It’s believing that even in difficult circumstances, there is still room for growth, purpose, and hope.

Melissa: Can you share one or two questions you wish people wouldn’t ask—or assumptions you wish they wouldn’t make—about you because of your disability?

Ben: One assumption I wish people wouldn’t make is that because I have a physical disability, I am somehow less capable intellectually or professionally. My wheelchair affects my mobility, not my ambition, creativity, or ability to contribute.

Another assumption is that my life must be sad or tragic. While living with a disability comes with challenges, it also includes success, friendships, laughter, dreams, and achievements. My disability is part of my story, but it is not the whole story.

I encourage people to focus on the person before the disability. Ask questions out of curiosity and respect rather than making assumptions.

Melissa: Beautifully said.

Notes from Mel

Ben shared the spinal cord injury (SCI) resource website he built himself. For more info, click these links:

• Ben’s blog A Journey Filled With Wonders, offers his reflections from nearly two decades of living with a spinal cord injury (SCI)

• An educational resource on SCI

Is there something you’re eager to know but are afraid to ask?

• I love when readers reach out with the things they want to know but are afraid to ask. Two of the questions I asked Ben in our interview—about how he sustained his injury and what questions and assumptions he wishes people would, and wouldn’t, make—came directly from questions readers sent me. I can’t always guarantee an interviewee will feel comfortable answering each question, but Ben was open and generous. Thank you, Ben, for your willingness to share.

Join me for Part Two (coming September 8), where our conversations shifts from the challenges of disability to the innovations they’ve inspired, exploring Ben’s work as an entrepreneur—from his caregiver app and adaptive fashion to his commitment to improving independence for others living with disabilities.

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The traumatic memories of course.

But also the events that might otherwise be unremarkable: the ordinary, the simple. These too arrive during struggle. They materialize like a sandstorm—a blinding, suffocating wall of memory particulates. As if to say: I am sacred too. Don’t forget me.

A few days after my arrival at Toronto’s St. Michael’s Hospital ER, I awoke in their Medical-Surgical ICU. While I moved between states of consciousness, unable to move or speak, recent memories filled my mind. Memories of movement and activity, of time spent with my children—swimming in the lake at a friend’s cottage, camping on my parents’ rural property, cheering for them while they played soccer and T-ball.

And other ordinary—extraordinary—moments too.

Just three weeks earlier, the healthy, upright version of myself had been enjoying a mini-vacation away from work and parenting. G—my then-husband—had been offered a juror role at the Cannes Lions International Advertising Festival. My parents drove from Ottawa to Toronto to care for our boys, then six and four. It seemed like the perfect getaway for a busy couple: a few days on the coast to unwind, catch our breath, and spend time together. And alone.

While G fulfilled his juror duties, I took solo morning runs along the Boulevard de la Croisette, then explored a quieter Cannes, where, just two weeks earlier, the bistros and brasseries had been filled with celebrities attending the more famous Cannes Film Festival.

One afternoon, I boarded the coastal train—the one locals affectionately call the Zou!!—and travelled along the Côte d’Azur to Nice, then onward to Monaco, a fifty-eight-minute journey.

I spent the afternoon wandering alone, following narrow streets that climbed above the Mediterranean, lingering near Monte Carlo’s harbour, absorbing the impossible beauty of a place I’d never imagined visiting.

If I’d known it would be my last time there—in that city, on that continent, as a person with four working limbs—I might’ve sat longer by the sea and wandered, with less hurry, those medieval pedestrian avenues carved into the cliffs.

I might’ve taken more than a dozen photographs, capturing places and sights beyond the docked yachts and luxury cars I clicked for my boys’ enjoyment when I returned home. The cars I knew they would recognize by their logos, parked outside Place du Casino and slowing through the hairpin turn below the Fairmont Hotel. The Ferraris and Lamborghinis and Bugattis that, to me, were simply shiny and sleek, painted in primary colours. I might have taken a single selfie, my body still intact as I perched along the high road, the still, even sea behind me.

I might’ve stopped checking my watch, worried G might be concerned if I failed to return to Cannes, to our hotel, in time for dinner. Because, in all likelihood, he wouldn’t have worried at all. He, in his laissez-faire, almost careless relationship with schedule, would have gone about his evening freely, with no expectation of my arrival or any need for us to dine together. It was I who was prone to the anxiety of timelines, of being reliable, of showing up when and where I’d said I would. It was my urgent nature to both witness and compress the visit into minutes. As if to say: I’ve been to Monaco. I’ve caught a glimpse of the wonder. A half-dozen photos of yachts and luxury vehicles. That’ll have to be enough.

But I missed my boys terribly that day, my solitary day, three weeks before the paralysis set in. My mind wasn’t present in Monaco. It was back home with them. And so the snapshots reflected what they would want to see of my travels rather than what I myself might’ve chosen to remember.

Looking back, I can’t help but wonder if that day was already teaching me something about longing and distance.

I’d left my cell phone at the hotel. I couldn’t be reached. There was a freedom in that—a freedom I’d failed to recognize, one I might have savoured had I known then that I would never again experience that same kind of physical autonomy. Never again step so casually onto a train, wander into another country for the afternoon, or climb a steep road because I could.

Had I known, I might’ve lingered. I might’ve looked less at the time and more at the sea. I might’ve taken a photograph of myself to better remember myself by.

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Note from Mel

Yesterday, July 13th, marked nineteen years since I acquired Transverse Myelitis. There are so many things about that day I will never forget. Then there are the things I learned afterward—the details that still feel strange to reconcile.

The local hospital closest to my home couldn’t take me for reasons I don’t recall, so I was transported downtown to St. Michael’s Hospital. That decision may have saved my life.

And then there was Hilary.

She wasn’t supposed to be there. There was no reason she would’ve known I was there. But somehow, my childhood friend—the person who knew me before my life split into a before and after—appeared at my ER bedside. And because she was there, I had an advocate. I received exceptional care from someone who understood both the medicine and the person lying in that bed.

The timing still feels extraordinary. July 13th was also the day Hilary’s dad died. Yesterday was the 41st anniversary of his death. Both Hils and I have often wondered about that coincidence. Had he somehow guided her there? Had he found a way to reunite us when I needed her most?

As always, thank you for reading 🔥 Little Flames and for supporting my writing. I’m deeply grateful for this community.

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June is Transverse Myelitis (TM) Awareness month. In recognition of this rare, debilitating, auto-immune disease, Ladan and I talk about navigating Ontario’s layered health care system, her goal to return to work, disease misconceptions, and our shared gratitude for physiotherapists.

PROFILE SNAPSHOT

• Name: Ladan Lashkari

• Superpower: Clinical intelligence + lived experience. Ladan bridges clinical literacy with patient embodiment. This dual lens gives her authority and precision in diagnosing what the system gets right and wrong.

• My Favourite LL Quote: “There really should be a system that sends a patient summary to all neurological hospitals—at least within Ontario, if not all of Canada.”

THE INTERVIEW

Melissa: You described how sudden and life-changing the onset of your Transverse Myelitis (TM) was. As a nurse, and now as someone who has gone through this as a patient, what do you wish doctors, nurses, or the general public better understood about TM and its impact on someone’s life?

Ladan: Around 1,400 people worldwide are diagnosed with TM every year. Because it is so rare, most hospitals in Canada rarely see TM patients, so many neurologists don’t have exact answers when it comes to recovery.

For Doctors: I had a terrible experience in the neurology ward. After I had already been admitted for three weeks, a junior attending doctor came into my room for the first time. Right after introducing herself, her first question was, “What is your expectation at the end?” I was shocked but answered, “Of course, I want to stand on my feet and walk again.” She bluntly replied, “Unfortunately, you will be wheelchair-bound for the rest of your life.” The room started spinning. I began screaming at her to leave my room, telling her I didn’t want to see her ever again. I completely lost hope, had to see a psychiatrist, and was put on antidepressants. When I was transferred to rehab, I couldn’t bring myself to do any activities for the first few weeks because of the severe shock, depression, and hopelessness her words caused.

I wish there was one centralized global centre that collects data on TM patients worldwide, so cases could be easily shared and compared.

I had to fight hard for a second opinion. It took my neurologist way too long to send a referral to a doctor at St. Michael’s. There really should be a system that sends a patient summary to all neurological hospitals—at least within Ontario, if not all of Canada.

For Physiotherapists: A shortage of hospital physiotherapists severely delayed my early recovery. By the time I transferred to rehab (Lyndhurst hospital), both of my calves had already suffered from muscle atrophy.

For Social Workers: Having a knowledgeable social worker is a vital asset. When preparing to discharge from Lyndhurst, I was unable to live independently. My first social worker recommended a modified group home apartment. When I explained that my employment income (EI) could not cover this alongside my existing mortgage and expenses, she callously suggested I sell my apartment.

Fortunately, the senior social worker returned from maternity leave. She immediately resolved the issue by introducing me to a transitional care program fully covered by OHIP.

Patients need an information handbook covering critical resources, including:

• Income Navigation: Clear, step-by-step guidance on transitioning from Short-Term Disability (STD) to EI, and then to Long-Term Disability (LTD).

• Information on the Centre for Independent Living in Toronto (CILT) Direct Funding program to secure [self-directed] home care.

• Pension Impacts: Clear answers regarding what happens to healthcare retirement contributions during medical leave.

Melissa: You’ve talked about your strong desire to return to work and the barriers you’ve faced with long-term disability and workplace attitudes. What does an ideal return-to-work plan look like for you, and what kinds of accommodations or mindset shifts do you think employers need to make for people with disabilities?

Ladan: [Returning to work] has been a goal of mine—a motivation to improve and work hard after my long-term disability.

In my last few calls with my long-term disability coordinator, we mainly discussed my plan for returning to work. He explained the need for physiotherapy sessions and assessments and mentioned starting back on modified hours. However, during the final call, he informed me that my long-term disability would be extended until age 65. This was upsetting because they made such a significant decision without involving me or conducting a thorough assessment to evaluate my cognitive and physical abilities.

Frustrated, I called [my insurance provider] to lodge a complaint and requested the forms for my doctor to complete for my return-to-work assessment. A case manager reviewed the forms with me, asking a few questions. She said she would contact my workplace to discuss accommodations and promised to follow up with me. Right now, I’m waiting for her update.

Melissa: Are there any common misconceptions about disability, recovery, or your condition that you find particularly frustrating? And are there questions you wish people would stop asking—as well as questions you wish people would ask more often?

Ladan: Most people assume that if they see someone in a wheelchair, it’s due to a car accident or a serious fall. They are often shocked when I explain that my paralysis resulted from a respiratory infection. Many have never heard of such a cause, which is why I appreciate when they ask about my experience.

As a nurse with a background in cardiology and oncology, I was unaware of how a respiratory infection could lead to paralysis until it happened to me. I want society to learn more about this, and I enjoy explaining my situation to others. I often tell people that if they find themselves in close contact, especially with someone sneezing, they should wear a mask to prevent infections.

Melissa: We share a huge gratitude for our physiotherapy teams in getting us back on our feet, rebuilding movement, and keeping us motivated long after typical medical expectations. Can you tell me a bit about your relationship with your physiotherapist Gillian? What makes her approach so meaningful to you, and how has her support shaped your recovery and outlook?

Ladan: Now we reach the highlight of my journey: my time with Gillian. She was not my main physiotherapist, but she filled in when my physiotherapist was away a couple times. From the start, I felt comfortable with her. Her positive energy and encouragement, even for small achievements, made a significant impact. I was amazed at how she highlighted my progress, often making me realize, “Wow, I did that!”

Meeting her truly felt like a miracle. After I was discharged, I heard about Gillian and her private practice, and she goes above and beyond for her patients. Her creativity in finding equipment and methods to help was inspiring. She showed me that despite the challenges, there is always room for growth.

Gillian’s positive energy motivated me to work hard towards my goals. Though I still have a long way to go, I’m heading in the right direction, thanks to her support. She is truly a blessing, and my family and friends who know her consider her a miracle worker.

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Notes from Mel

This month marks one year of Little Flames on Substack.

I want to say a heartfelt thank you for being here with me over the past year—reading, responding, and sharing.

I have some exciting news coming soon, and I can’t wait to share it with you.

Before that, I’d love to hear from you:

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• Know someone looking for a passionate, exceptional neurological clinician or just want to read more about Ladan’s physiotherapist Gillian Johnston? Check her out here. (Side note: Gillian was also one of my physio champions when I was a patient at Lyndhurst 2007-8. I’m hoping to interview her for a future series).

• Read more about my collaborative interview process here and here.

Ring the bells that can still ring
Forget your perfect offering
There is a crack, a crack in everything
That's how the light gets in

— Leonard Cohen, “Anthem”

Last October, author Becky Blake interviewed me for her newsletter Truly Important. She asked me to describe the focus of this newsletter—Little Flames—in one sentence. I told her Little Flames is: Essays on illness, creativity, reinvention, and finding beauty in the fracture.

After this interview was published, another writer friend Karin Doucette emailed me with these thoughtful words:

“Great conversation with Becky, Mel. Please write separately on that fab phrase of the beauty in the fracture, not unlike Cohen’s ‘the crack lets in the light’—if you don’t, I will steal the phrase.”

Beauty in the Fracture

So what does finding beauty in the fracture mean to me?

Since taking my first Creative Nonfiction course in 2018, my writing has been centred on fractures—of body, of marriage, of how I envisioned motherhood, of career—but also on the beauty that survives the illness, betrayal and fear.

The subjects of illness, creative practice, and reinvention—in finding the beauty, the light within each—are, for me, inseparable. They are so fundamentally interconnected that, on the good days, they feel almost kindred.

Could I have written on these subjects before my illness? Perhaps. But I would’ve done so with far less understanding of fragility, and far less appreciation for the light.

As Karin so astutely pointed out in her email, echoing the words of Leonard Cohen: it is the cracks that let in the light.

How Little Flames got its Name

Months after beginning these essays here on Substack, I learned that to draw readers and ignite the algorithm, a newsletter title should be simple, searchable, and immediately clear. Little Flames is none of those things. It’s metaphorical, slightly obscure, and asks the reader to pause and ponder. But the longer I write here, the more I understand that the title could never have been anything else.

Its name aligns with the title of my memoir. My memoir was originally called Still, another metaphorical title that referred both to the immobility of my body and to the act of continuing—in the vein of the novel and movie Still Alice. But as the manuscript evolved beyond scenes of surviving paralysis, the story expanded too. Still is also the title name of a recent documentary by Michael J. Fox, a novel by Joanna Cockerline, and several other books; it became clear that my memoir needed a new name.

Becky helped guide me through the process of building a title that encompassed not just my paralysis, but my journey of recovery. My title needed to evoke movement—the slow, sustaining, microscopic shifts that signal change long before transformation becomes visible. Little Flames Under My Skin felt right.

My illness, Transverse Myelitis (TM), is a neurological condition. Spinal cord lesions disrupt the signals travelling between brain and body. As messages attempt to squeeze through damaged nerve pathways, or reroute themselves along undamaged ones, my body burns as though it is on fire: fingers, toes, skin, are aflame; the sensations are electric, relentless, and alive. In that way, flames became not only a metaphor for survival and reinvention, but a physical reality living under my skin.

So whether I’m writing memoir, poetry, fiction, or these monthly essays here on Little Flames, I keep returning to the same question Karin pointed toward in her email: how do we find beauty in the fracture?

There was a period before my Transverse Myelitis attack when I believed I might be slowly dying. By the time paralysis arrived, my body had been signalling warnings—tingling fingertips, fatigue, headaches, nausea and other flu-like symptoms—for months. At times, I wondered if I’d make it to fifty.

And yet here I am.

Perhaps that is the real beauty in the fracture: not the break itself, but the light that finds its way through afterward. The relationships, art, language, and moments of tenderness that emerge through damaged places. The evidence that something living can still exist within the most arduous conditions.

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Notes from Mel

• A screenshot from a Google search of other books called STILL.

  

• I did write a poem entitled STILL. It was selected for the Disability Gains Anthology, produced by Arts AccessAbility Network of Manitoba, and its launch is slated for November 2026 at the Canadian Museum for Human Rights in Winnipeg. Once it’s published, I’ll share it here.

• Sometimes my friends take me on trips through their photography. Often, they inspire my writing. Thank you to Karin and Hilary for taking me to a Nfld sunset, and a hike through the Cotswolds, stone walls, broken forests, resilient plants and all.

• June is TM awareness month, an annual observance of this rare and crippling disease which most often affects children and young adults. For my reader friends with TM and other neuroinflammatory, autoimmune, and demyelinating conditions, may we toast to the cracks that have let in the light.

  ---

As always, thank you for reading 🔥 Little Flames and for supporting my writing. I’m deeply grateful for this community.

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This month I spoke with Peter Ekstein, who suffered a catastrophic injury in 2015 after being struck by a vehicle while out for a run. Since then, he has rebuilt his relationship to movement through hiking, travel, and intense physiotherapy, while also dedicating part of his life to volunteering and creating a documentary about his recovery journey.

PROFILE SNAPSHOT

I remember my last three runs…

They were a week or two before I became ill. In one, I am running with my friend Lisa through a dense forest near her cottage north of Kingston. In another, I am running with my Uncle Bob along a stretch of quiet highway, at a family reunion outside Ottawa. In the final, Cole and I are sprinting—racing each other—from the beach to our old home.

These runs remain unusually vivid in my memory—the kind of moments that stand apart from all the runs that came before them. Those earlier runs have blurred with time, but not these.

Peter’s experience is different. He has no recollection of his last run—the one that ended in his accident. The trauma of that day has erased it.

So we left that moment where it was, and turned instead to what has come after—how movement has re-entered Peter’s life in different forms.

THE INTERVIEW

Melissa: When you think about running—I know hiking and biking have replaced running in some way—are you able to get that same cardio sense you used to get? That you’re doing cardio, and sweating and working your heart? That’s something I miss about no longer being able to run.

Peter: The only opportunity for me to get that cardio workout is my boxing. I had one session this morning—and fortunately it’s been about two hours, because I’m soaking wet. Biking—it’s hard for me to get to that level of exertion. And hiking, there’s no cardio to speak of.

And I was never one of those who got in a groove and kept going. I ran because when I was up at my cottage, it was about the only thing I could do that was physical exercise. I ran on and off for years, but I never really loved it. I used to get a great cardio workout biking, but it’s tough for me to get that same level. I could bike forever—but running was just something I did when I didn’t have other options.

Melissa: Okay, so you don’t miss it as much as me. That’s sort of how I feel about golf. I do not miss golfing.

Peter: I miss the the activity of being outside, walking, being with my buddies. You know, go for a nice walk through a park, hit a few balls, have a beer and have some fun. I miss that part. I’m in Florida for the winters, and 99% of the people are playing golf. They live in golf communities, and they play golf, and they make friends by playing golf. I have to be a little bit more of a loner, because I go biking every day, but that’s kind of by myself.

Melissa: You miss the social aspect of it, which really is the strongest part of golfing, the social aspect?

Peter: That and skiing. There was nothing better. I’d go with my son once or twice a year, and I always said it was my best holiday, because my son is a crazy snowboarder. So all I could do from top to bottom, was just think about staying alive. I couldn’t think about business or other problems. But I never got to that level of proficiency on a sit ski. I was worried about concussions on the way down.

Melissa: We don't need concussions on top of everything! Tell me about when you started hiking again. There’s an article in The Jerusalem Post about your first post-injury hike. What was it like hiking in Israel—especially alongside victims disabled through terrorist attacks?

Peter: They had the company Paratrek, able to take people like myself, and when I met some of these [injured victims], I hooked them up with the guide, who’s a friend.

That first year was incredibly challenging. We went on hikes that even people in good shape had a hard time with. But being able to do it—it was incredibly rewarding. I literally came out of that thinking, if I can do that, I can do anything.

Being with other people in a similar situation—people who thought they’d never hike again—that was powerful. They inspired me, I probably inspired them, and maybe together we inspired some of the regular hikers too.

I made good friends on that trip—people I’m still close with today, other people who are, you know, also, I hate to use the word. Disabled. I haven’t found the right word yet. I don’t love the word ‘disabled.’ We just do things differently.

Melissa: I’m not a fan of the word disabled either. Let’s go with ‘differently-abled.’

Peter: And every year it’s in a different place. And that first year it was in the desert, in a spectacular spot to go hiking, and they kind of take turns between North and South. North is green and hilly mountains. And South is desert mountains. I love the desert, and it’s just majestic, and you feel so kind of little there. But also part of the greater world. And when the sky’s so big, there’s a reason that all the prophets came out of the desert. And there are points where you stand and you can see Egypt, Jordan, Saudi Arabia, over the Dead Sea.

Melissa: When we last spoke, we talked about the documentary you’re working on, about your physical recovery journey. Where are you in the documentary process?

Peter: I think [the filmmaker] has everything he needs. There’s a little bit more editing he needs to do, and there’s some finalizing. I’m hoping within the next couple months it’s done.

I'm going to decide, is this something that is nice for my family and friends, or is this something that we want to do a little bit more with? But I’ve been very clear—I don’t want it to be “look how amazing Pete is.”

I want it to show that I’m just a regular guy. If you work hard, stay positive—you can improve your situation.

The magic isn’t anything special. It’s here. It’s the work.

Melissa: When we spoke last time you described your life as divided into thirds: one part work—you have to pay the bills—one part training, rehab and working out, and the other part volunteering. I thought this was so fascinating. Is this a structure you’ve found has helped with your healing process, both mentally and physically?

Peter: The physical part—I see that as part of my job now. I’m not expecting to get significantly better, but I don’t want to go backwards. I’m going to be 65 this year, and I want another 15 good years of being able to do what I can do now. That takes work.

The business part—part joy, and part that I still need an income.

And the volunteering—that’s for your soul. It’s what lets you end the day and say, I think I helped someone today.

I always tell people—get involved in something. You always get more out of it than you put in.

Melissa: I love that. For the soul. Soul-work.

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Notes from Mel

Peter and I covered a lot of topics on our video call. Our conversation extended beyond what I encompassed above.

Ten years post-injury, Peter continues to devote hours each day to his physical recovery and maintaining what he’s regained. He cycles with an adapted bike, meets with a personal trainer 4x/week, and attends Physio-logic 2x/week (we share the same, amazing neuro physiotherapist).

Most impressive perhaps is his charity work, volunteerism and fundraising which is extensive in both time and range, and began many years before his injury. To read more about two of the organizations that provide him with “soul-work,” click below.

• March of the Living

• OneFamily Camp Timberline

I was delighted to learn that Peter’s mom Anita is also a memoirist. I found her book on Toronto Library’s e-reader app, Libby, via her publisher and on Amazon. Perhaps one day, mine will find its way onto a nearby shelf.

If you’d like to be part of the 🔥 LITTLE FLAMES Contributor Series — or you know someone whose work or life has been shaped by trauma, illness, or disability — I would love to hear from you. You can reach out by leaving a comment, sending a chat message, or contacting me at: melissawilliams204@gmail.com.

Read more about my collaborative interview process here and here.

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Now I pierce the darkness, new beings appear,
The earth recedes from me into the night,
I saw that it was beautiful, and I see that what is not the earth is beautiful.

— Walt Whitman, “The Sleepers”

Whitman makes sleep sound expansive. Almost holy.

For me, sleep feels like being awake inside a world I can’t control.

In my dreams, I’m being hunted by a serial killer, or I find myself back in the office, having been off sick for years and receiving a demotion for not showing up.

Neither of these things have or will likely ever happen to me. I’d be far too much physical work for a serial killer. Logistically, it doesn’t make sense.

And the beloved newspaper company I worked for—thriving in 2007—closed its doors a few years ago, when the digital world quashed the readership of printed news. Besides, I never recovered enough to ascend that mighty staircase above the printing press.

I’m not a generally anxious person when I’m awake. But somehow, in my sleep, the world is after me.

When I was hospitalized, I blamed my sleep chaos on the surroundings.

The ICU doesn’t sleep. The lights are dimmed, but it’s never fully dark. You and fifty other bodies share the same space, separated only by curtains.

Add to that the regular intervals of intravenous narcotics, ventilator sounds, and unharmonious beeping—many times I struggled to distinguish what was real from what I was imagining, even when I was conscious.

I have a friend who sleeps wholly. She lies down, shuts her eyes, wakes up eight hours later, refreshed.

Her secret concoction: a CPAP machine, a sleep app that plays wind and ocean sounds, and five pillows placed strategically under various parts of her body, keeping her spine aligned and knees supported.

When I travel with her, I have to admit that the white noise from her CPAP and app is soothing. It makes me feel like I’m floating in space. But I still don’t sleep through the night.

I have another friend who swears by CBD/THC gummies.

Now that cannabis is legalized and regulated in Canada, this option has helped many with their pain and nighttime rest. But for me, I just feel slower and dopey. My unsteady body becomes heavier and less reliable.

I admire both of these women. They wake up perky and ready to take on their world, whereas I need a cup of dark espresso before I can even face another human.

I’m a melatonin fan. It helps me fall asleep. Melatonin conquers half the battle.

I just don’t stay asleep.

Sleep, for me, is always interrupted. Sometimes it’s not even my fault. Sometimes it’s our cat Lilo that interrupts. Once it was Marie Osmond.

A few nights ago, I woke up to what I can only describe as a murder in progress.

High-pitched, unearthly screeching tore through the house. Not a normal cat noise. Not even a distressed cat noise. This was something else. A vicious predator with intent to kill. A being—or two beings—darting between rooms on the main floor and basement.

Naturally, I assumed there was another animal in our house—a coyote, most likely. We have sightings often in the Beach. The Beach coyote preys on the meekest and cutest of our loved ones: the lap dog and the domestic cat. Sure, coyotes aren’t known for carrying house keys or organizing break-ins, but I was convinced the howls were coming from one.

We had the patio door open earlier in the day to let the first breath of warm spring air into the house through the screen. Had we forgotten to close the glass slider before bed? Had we left Lilo—nothing but a screen door protecting her—vulnerable to a hungry coyote?

I woke Sam up, first by calling his cell and, when that failed, by screaming his name. By then, the tortured animal had quieted. Its last known location: the basement.

I warned Sam to be careful when he began descending the stairs. There might be blood everywhere.

He looked for Lilo. There was no sign of our cat. Or a coyote. Or blood.

He came back to my room, still gathering his senses at four a.m. A few minutes later, the screeching began again.

He agreed—the sounds did not sound like a cat at all.

By the time he found Lilo, cowering in a dark corner, he discovered she had gotten one of her hanging cat toys wrapped around her paw and couldn’t get it loose. She obviously thought it was a predator and kept flying around the house, trying to escape it, taking on the cry of a coyote.

She hissed at Sam as he tried to pry the toy loose, emitting a slightly softened form of terror.

In the morning, we found Lilo curled up on the couch: a tight little ball of fur, content, deep in sleep. While Sam and I leaned over our coffee cups, breathing in the caffeinated steam, she was likely dreaming of squirrels and cat treats, having forgotten the incident completely.

The following night, a figure I hadn’t thought of in years entered my brain.

I had a dream that Marie Osmond was a book agent.

I sent her my book, then agreed to meet at her office. She claimed to have read it in three hours—which should have been a red flag—and came back to me with a smirk and a no.

She said the only place I’d find my book is on the shelves of No Frills—a budget grocery store chain that I don’t even think sells books.

Hey, at least she’s shopping Canadian.

“I hate you, Marie Osmond. You don’t know anything!” I screamed at her as she exited her office with my book in hand, wearing platform red heels, a too-tight business suit and perfect skin.

I have no idea why I’m dreaming about Marie Osmond. She’s probably a nice person. She’d probably like my book.

The Sleepers is a long poem, much like my nights.

The themes that resonate throughout are transcendently human: vulnerability, the desire for unity, the experience of suffering, but also the way sleep offers a temporary reprieve, where the body is restored and dawn returns as a kind of renewal.

The felon steps forth from the prison, the insane becomes sane, the suffering of sick persons is reliev’d,

The sweatings and fevers stop, the throat that was unsound is sound, the lungs of the consumptive are resumed, the poor distress’d head is free,

The joints of the rheumatic move as smoothly as ever, and smoother than ever,

Stiflings and passages open, the paralyzed become supple,

The swell’d and convuls’d and congested awake to themselves in condition,

They pass the invigoration of the night and the chemistry of the night, and awake.

Between the interruptions, there is rest. There must be. In the morning, I’m no longer fearful. The anxiety has waned.

I can only share what I remember from the interruptions. The remaining hours are a mystery.

I’d love to know your sleep concoctions, or what keeps you awake at night.

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In this month’s piece, Lindsay and I talk about what it’s like living — and providing care — in Quebec’s northernmost region: Nunavik.

PROFILE SNAPSHOT

• Name: Lindsay Lu

• Superpowers: Cross-cultural translation, witnessing with compassion, adaptability.

• My Favourite LL Quote: “My favourite part of living in the North is being part of a community. We have become so used to social distancing and focusing inward that we often forget that there are others around us … It is so heartwarming to live in a small community where people are genuinely happy to see you and greet you by name.”

THE INTERVIEW

Melissa: What first drew you to nursing, and later to working in northern communities in Nunavik?

Lindsay: I remember staying up past my bedtime to watch the “ER” TV show with my mom. I found the hospital atmosphere and drama to be very alluring. This childhood experience may have planted a subconscious seed within me to later enter the medical field, as I’ve had a calling to become a nurse for a long time.

The north has always been of interest to me and when I found out that my nursing career could allow me to venture there, I jumped on the opportunity.

My interest in Nunavik dates back to a video that I watched in a humanities class, back when I was a CEGEP student. The video was filmed by the National Film Board and explored the Inuit way of life in the 1970’s. I told myself that I would one day like to travel to Northern Quebec and learn more about Inuit culture.

Melissa: You work closely with vulnerable communities. I imagine you witness hardship and strength on a daily basis. What have northern communities taught you about resilience and human dignity?

Lindsay: There is no doubt that residential schools have had impacts on Nunavik communities. Numerous patients have recounted to me the horrors that they lived through while attending these schools. Unfortunately, many have turned to alcohol as a coping mechanism to deal with the emotional and physical trauma of their experiences, which has had repercussions for the Inuit way of life, even across generations.

Northern communities are incredibly resilient. Many elders in these communities are working hard to reconnect youth with their lost culture. They encourage returning to and reconnecting with the Land. There are many elders who teach hunting, sewing, throat singing, berry picking and basket making as a way of coping instead of turning to alcohol.

I think that this is a beautiful way of taking back what was lost, and it has taught me that perseverance is possible even in the darkest of times.

Melissa: What does compassionate care look like in environments where resources are limited, and distance is vast?

Lindsay: In some ways, medical care in a remote community looks quite different from what one might experience in an urban area, but it is very much grounded in receiving care and support that is delivered with compassion, dignity, and cultural sensitivity. For example, we do not have access to CT scans, an operating room or medical specialists. If a patient requires advanced care, then we often need to send them to Montreal, which means removing them temporarily from their culture and support systems. I have on many occasions witnessed patients refuse care because they were either afraid of how their family would cope without them or because they feared being stereotyped once in Montreal.

Another issue that we commonly face is a language barrier, where patients have difficulty communicating with health care workers who aren’t from the region. English is the second language for most people living in the community where I work, and there are many Inuktitut words that simply do not translate to English. Even with a translator, it can sometimes be difficult to communicate and ensure that health care workers have all of the information they need to provide the best care possible.

On the other hand, however, working in a small community hospital has its benefits. Patients have access to a doctor or a nurse at all times. Working with a smaller volume of patients also makes it easier to create a bond with them, as well as monitor their progress or decline and react faster.

Melissa: When did knitting become part of your life? Do you see knitting as a form of meditation, balance, art or something else entirely?

Lindsay: I have always had a creative streak, but only started knitting in 2020 when I found out I was going to become an aunt. I had set a goal for myself to knit a dress for my niece and, after much trial and error, succeeded with a finished product that I was mostly happy with. This ignited a spark in me to continue knitting, and I have since created countless items from adult-sized sweaters to hats for newborns in intensive care units. Knitting provides an important outlet for me to relax after a long and sometimes stressful day at work, and is a nice way to enjoy some moments of serenity and quiet reflection.

Melissa: I’ve seen your knitting up close and have been the lucky recipient and spectator of some of your other creative projects. Hand-crafted papier-mâché piñatas and Punch-a-Prize mystery boxes, to name a couple. You are very much an artist and creative spirit. I’m also so happy that knitting, in particular, gives you so much joy.

As a person who has never travelled to Canada’s north, I can only imagine the experience from photos and stories. What’s your favourite part of living and working in the region?

Lindsay: My favourite part of living in the North is being part of a community. We, as a society, have become so used to social distancing and focusing inward that we often forget that there are others around us—particularly in big cities. It is so heartwarming to live in a small community where people are genuinely happy to see you and greet you by name.

I also find that I am much more social and extraverted when working in the north. Seeing as everyone lives within walking distance from each other, there tends to be a lot of social activities, including organized dinners and board game nights.

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Notes from Mel

• Lindsay has a unique ability to interpret language, and also context—understanding why patients make the choices they do within the realities of culture, history, and distance. She bridges the gap between Western medicine and Inuit lived experience with respect and empathy.

• Here’s a map of Canada’s provinces and territories, including the often-confused territory of Nunavut and region of Nunavik. I’ve always had a place in my heart for maps—my undergraduate degree was in Environmental Studies, and my first job had me drawing a lot of digital maps. But maps create the illusion that we understand a place simply by locating it. As Lindsay’s story makes clear, knowledge isn’t just about understanding the geography.

• If you’d like to be part of the 🔥 LITTLE FLAMES Contributor Series — or you know someone whose work or life has been shaped by trauma, illness, or disability — I would love to hear from you. You can reach out by leaving a comment, sending a chat message, or contacting me at: melissawilliams204@gmail.com.

• Read more about my collaborative interview process here.

Leave a comment

#HealthcareHeroes #HospitalLife #Resilience #Nunavik #CreativityInHealing #DisabilityAwareness #LittleFlames #Inuit #Indigenous #Canada #Knitting

At thirty-five, I was living an active, full life—raising two young children in a beachside community in East Toronto, building a career with one of North America’s largest newspaper organizations, and training for a half-marathon.

Then, on one ordinary morning, I woke with a sharp pain in my neck. Within minutes, it escalated into paralysis.

By the end of the day, I lost the ability to breathe, speak, and move. I was ventilated, and placed on life support in a medically induced coma. Everything I knew—home, family, career—was severed.

I spent eight months in the hospital, away from my children, then embarked on a decade-long physical rehabilitation journey. I traversed the medical system, meeting with specialists worldwide, and undergoing tests and treatments in search of a cure.

I also began to encounter the limits of the supports and systems around me.

When we tried to build an accessible home, we were met with resistance from a neighbour, and, unexpectedly, from our own city councillor. What followed was a relentless effort to fight NIMBY-ism, exposing how access is something that must be fought for, rather than assumed as a human right.

My marriage, once a source of strength, shifted as caregiving replaced intimacy. Its eventual end marked another rupture. I became a single mother navigating a legal and custodial battle while trying to rebuild my life.

Alongside all of this, another kind of reconstruction began.

I began to write.

I returned to journals, to medical records, had conversations with clinicians who treated me. With hundreds of pages of medical notes splayed across my dining room table, I began to trace my illness through records.

Merging these fragments—memory and documentation—allowed me to assemble a timeline, reconcile the parts I could not remember due to coma, sedation and what I refer to as narcotic eclipse.

Writing within these dual parameters of medicine and memory became an act of pilgrimage and reclamation.

What this is

Little Flames is a bi-monthly newsletter where I write about illness, disability, and what it means to rebuild a life in a body that no longer cooperates.

I write personal essays, reflect on access and the built world, and interview disabled creatives and change makers. My writing is grounded in lived experience, but it also looks outward—at the systems and assumptions that shape how we live.

Where to begin

If you’re new, you might start here:

The beginning
→ Medicine, Memory and Making Sense

On access and the built world
→ Access via a Staircase: A Love Story (Part 1)

On identity and reconstruction
→ I Came Back Changed. And So Had the Campus, Or Had it?

On publishing and (almost) winning contests
→ Publishing Purgatory and Still in the Water

A note on my work

My memoir, Little Flames Under My Skin — Rebuilding a Life, One Neuron at a Time, was awarded 2nd Place in the AWP Sue William Silverman Prize for Creative Nonfiction.

It has been endorsed by Cheryl Strayed, who writes:

“LITTLE FLAMES UNDER MY SKIN is a riveting, harrowing, and profoundly inspiring book about how the author survived and ultimately thrived after she was struck by a sudden, debilitating illness in the prime of her life. With astonishing intimacy, honesty, and insight, the author writes about the fearsome vulnerability of being a patient on the brink of death, about the long and painful process of recovering the most basic bodily functions, about grieving the life altered and the career, home, and marriage that were lost due to her illness, and—perhaps most importantly—it’s about how she fought every day to rebuild her life anew, one brave breath at a time. I’ll never forget this powerfully illuminating memoir.”

My story has been featured in The Globe and Mail, Toronto Star, and CP24, and in essays and interviews with Brevity Blog, Truly Important, PublicationCoach.com, the University of Toronto’s uLearn blog, and the podcast Intuitively Aligned.

If this resonates

You can subscribe below to receive new work, or reply to any post—I read every one.

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My essay “While the Memoir Waits: Collaborative Interviewing and Building Platform”, was published yesterday, March 9, in The Brevity Blog. It’s about the strange stretch of publishing purgatory: the waiting, the uncertainty, and of expanding writing craft and building platform as a way through — and out of — this period.

That strange stretch of waiting surfaced again in an unexpected place a few weeks ago, when my oldest son called me from a bookstore in Los Angeles

He’d just moved into a new-to-him neighbourhood near his job at a tech start-up — a compact, walkable stretch with independent bookstores, sidewalk cafés, and low-rise film studios tucked between tech offices.

My sister had sent him a gift card to a shop neatly situated between his first bachelor apartment and his office. He was browsing the shelves in search of his next read when he called.

“Hey, Mom,” he said. “What’s going on with your book?”

I told him about the publisher submissions and queries I’ve sent out since being named runner-up for Sue William Silverman Prize for Creative Nonfiction. And about the waiting. Publishers can take six to twelve months to read a submission, especially when they’re receiving hundreds—or even thousands—of manuscripts in a given year. Sometimes you’ll hear back; other times you’re left wondering whether your manuscript is still circulating somewhere in the publishing universe. Over time, you learn that waiting is part of the process.

My son was flipping through a photography book about sticks. “If a book about sticks can get published, then surely your memoir will,” he said, calm and certain.

When had my child become an adult? When did the reassurance start flowing the other way?

I had nearly forgotten about the stick book until I mentioned the exchange to my friend and writing mentor, Becky, when she asked — as she often does — about the status of my publisher submissions.

When I told her what my son had said, she laughed. She knew the book. Her husband had bought it for their son.

And there it was again: A book devoted entirely to sticks. Someone compiled and pitched it. Someone published it and got it onto bookstore shelves — and into the hands of both of our families.

A publisher saw value in something as peculiar — as specific — as a book about sticks. If that can find its way into the world, maybe my story will also. Not because it’s better or more deserving, but because readers are many and varied, and stories are too.

Maybe Sticks endured its own publishing purgatory before finding its home.

The photo I’ve included at the top is from a family trip not long after my illness struck — one of those difficult, extraordinary periods — a time when our family was still intact, and my boys were small enough to clutch sticks as if they were treasures. Back then, sticks were simply objects of play. Now they remind me that even the smallest things carry stories worth holding onto.

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PROFILE SNAPSHOT

• Name: Allison Kirkland

• Superpowers: Vulnerability as a Backbone, Grounded Self-Trust, Gentle Power

• My Favourite AK Quote: “What if it’s OK to be misunderstood? What if I don’t have to educate? What kinds of stories would I write if I wasn’t trying to teach?”

THE INTERVIEW

Melissa: Your Substack newsletter is called the intangibles. When I think of that word, it takes me back to my early career in marketing and sales, where intangibles were the added values we couldn’t quantify — like brand and reputation. I’ve been thinking about that idea differently now, in relation to writing and lived experience, and I’m drawn to how intangibles creates space for what can’t easily be measured or named. I’d love to talk with you about how that word holds in your disability experience and writing life.

Allison: I grew up in a very type A pre-professional atmosphere. I was taught to measure, to assess, compare. Everything was data and the data was used to place people in a hierarchy of usefulness and belonging. If you met certain data points, you could access certain experiences or privileges, like getting admitted to a certain college or being offered a certain job.

In my twenties I had a job as a grant writer at a small performing arts center. The grant makers always wanted us to measure the value of the programming. How many audience members were enriched by the concerts or the open mics or the staged readings that we held in our building? What was the exact percentage of the value of our programming?

It felt so silly to me, assigning this measurable value to something so intangible.

How can one measure the amount of enrichment they get from going to a poetry reading or a concert or a dance performance? How do you measure the degree to which seeing a sunset improves your life? Or smelling a gorgeous flower? How do you measure how much reading a good book improves your life? Or writing one? And honestly, why would you measure it?

If we define intangible as “of a value not precisely measurable” then I think there’s something quietly revolutionary about living in a disabled body – it’s different from the norm, and in some ways it’s not a useful or productive body. From the outside, my body might not look like much. But living in this body provides me with treasures that can’t be measured.

Melissa: In a recent post, you talk about the concept of boundaries. Can you share more about what you think about boundaries not just as limits, but as something that actively shapes your work. How have you learned to weigh privacy, visibility, and the desire to educate on your own terms through writing and speaking?

Allison: My thinking around this has evolved and I think it will continue to evolve. As someone who didn’t grow up around a lot of other visibly disabled people, I often felt a responsibility to represent the entire disability community. It was a lot of pressure.

People always asked about my hands. As a child it never even occurred to me that I didn’t have to answer them! After all, I was the one who was different. Sometimes, this form of education felt meaningful to me, and sometimes it still does. I enjoy thinking that part of my life’s purpose is making the future easier for disabled kids who are growing up now. Maybe my education has spread awareness, has defied stereotypes, has helped a small kid with a limb difference feel seen. I know that has been the case for me as I have encountered more disabled people speaking truthfully about their lives. And I know that I live in a world now where being disabled is a little less isolating, mostly because of the activists and writers who came before me who dared to write and share their story.

But educating others was also a bit self-serving, because I assumed that if people could understand me better, maybe I would make them less uncomfortable. To me, understanding was a replacement for a sense of belonging that I didn’t often feel. If someone understood my inner life and how I viewed the world, maybe they’d see me as more of a person, I’d feel more included.

But as I got older I realized that ultimately takes agency away from me because it still leaves the decision up to the other people. They still get to decide if I belong, and sometimes no amount of educating on my end will change their mind.

I still enjoy educating on my own terms, without any expectation that I’m changing the world or changing people’s minds – just to express myself and understand myself better. But these days I am asking myself: what if it’s OK to be misunderstood? What if I don’t have to educate? What kinds of stories would I write if I wasn’t trying to teach?

From a craft level, I sometimes think that stories that aren’t here to teach something or to translate one’s experience in a way that others might understand actually make for more interesting, surprising stories.

Melissa: I’d never heard the term Appearance Activism before you talked about it. First of all, thank you. Secondly, you’ve also written about how beginning your MFA in 2012 shifted how you thought about sharing your story. I’d love to hear more about how language and education changed your relationship to visibility.

Allison: I learned the term appearance activism from the writer Carly Findlay. I was so thankful for the term because it helped me to make sense of the way in which I think about my own activism and my own experience of living in my body.

I often hear disability talked about in terms of, well, ability! What a body can and can’t do – full stop. I never connected quite as much to that. I always had beautiful handwriting, for example. And I am also really good at using my hands as tools, even if I don’t have as many fingers. I can do all kinds of things that people assume I can’t do. I do benefit from certain accessibility tools, and doing things like chopping veggies or pouring tea from a hot kettle are still difficult. But overall I rarely feel that my limb difference impacts my abilities.

But I can’t change my appearance. That is something I cannot adapt. And that’s a facet of my identity and lived experience that was not talked about much as I grew up: I just didn’t look like everyone else! My different appearance – more than ability or lack of ability – also contributed to much of the isolation I experienced as a child.

I once did a book report in middle school on the giant squid. The report included an art component – I illustrated a deep-sea scene. It was a beautiful illustration, and my English teacher asked to frame it and display it in his classroom. He would often point it out to his students and say, “The person who made this illustration was born with a physical disability. So anytime you feel you’re not capable of something, use this as a reminder that you can do things you think you can’t do.” Yes, it was a generous gesture, and it made me feel pride that he displayed the illustration. But I did not feel seen and understood by this gesture because I never felt that my artistic ability was impacted by my limb difference. So, to me, I didn’t connect with the story he was telling about this piece of art. I would have told a different story to illustrate my perseverance and my strength. And I would have told a different story about what it meant to create that illustration.

When you spend decades navigating that chasm between your experience of living in the world vs what people think your experience is of living in the world, you’ll feel compelled to locate language that accurately represents your lived experience across that chasm. It’s an act of translation.

I actually found it difficult to write about myself during my MFA program. I was younger and many of the questions I was trying to examine in writing my memoir would take years for me to fully confront.

It was only when I connected to the disability community online many years later – through Instagram – that I felt fortified with enough support to start writing my story. The disability and appearance activists online introduced me to words and phrases that felt more in line with my own experience – “limb difference” instead of “birth defect,” for example. Just knowing that I had the agency to choose language that felt more like me gave me the confidence to use language in a way that felt more empowering overall, whether I was picking a label for myself or picking the words in my memoir. This transformed how I’m writing my own story, and it has made me more comfortable being visible because I have reclaimed so much of my agency with the help of language.

Melissa: Hmm. I can relate to so much of this. The language or “labels” we and others use to describe appearance and lived experience. And also the assumptions made about artistic or handwriting ability based on appearance. How appearance is unevenly weighed against actual ability or adaptability.

As you work on your memoir, how are you deciding what to include and what to leave out—both in terms of material and personal exposure?

Allison: I am 55,000 words into the first draft of my memoir, and there is a lot that I still have to uncover about the story I’m telling. There’s a great quote by the memoirist Melissa Febos: “The idea that memoirists are over sharers who crave attention is erroneous. We are usually people who have hidden large swaths of ourselves in order to appeal to others, to feel safe. By the time we write our memoir, those concealed parts have become too heavy to bear.”

I hid a lot, throughout my life, about what it meant to exist in my own body. I hid it from others and I hid it from myself. It became so weighty that now writing this first draft feels like finally putting down heavy luggage after going on a long trip. It’s really liberating, and I feel lighter.

The touchstone for me is always vulnerability. That’s what I have to keep coming back to, again and again. There’s a difference between being vulnerable and oversharing. As long as I focus on vulnerability, I feel like I can share a deep part of myself without feeling overexposed.

Melissa: I’m also curious about the writers and artists inspiring you right now—across memoir, newsletter writing, teaching, and your reader prompts. I noticed you recently shared a page from Frida Kahlo’s sketchbook in a newsletter.

Allison: I do admire Frida Kahlo, although after reading Emily Rapp Black’s memoir Frida Kahlo and My Left Leg. I don’t feel like I have anything to add to that conversation. It’s such a good book!

I read a lot of fiction, even though I teach personal essay and memoir. Recently I loved The Wilderness by Angela Flournoy about a group of 5 millennial black women navigating “the wilderness,” that critical time from your 20s to 40s. I tend to love novels that follow a set of characters for many decades or even generations. Pachinko by Min Jin Lee is another book that comes to mind when I think of this type of book structure.

I love to say that reading counts as writing (right?) because our writing benefits from reading widely across genres. I love the immediacy of poetry and the fact that I can sit with a poem almost as a meditation, maybe during times when I can’t focus on a whole book. I never try to understand the poem; I just let it wash over me and transform me. I love listening to The Slowdown Podcast, which gives us a poem and a moment for reflection every week. Each episode is only about 5-7 minutes long, so it’s a really easy way to bring more poetry into your life.

There is such a wealth of good writing on Substack. I’ve been getting a lot out of Our Bodies: Ourselves by Liddy Grantland. Liddy has been writing with great wisdom about what it means to have a body for many years. Then last year she was diagnosed with Stage IV cancer at age 26. She manages to explore disability, care work, cancer, and everything in between with a light, honest touch that never leaves me feeling drained despite the heaviness of some of the topics. I am thankful that she gives us access to her wise, brilliant brain.

Notes from Mel

• Every time I have the opportunity to interview someone, I feel the edges of my community expand. Eighteen years into living with my body’s fracture, I’m still learning the beauty of human complexity. Allison’s words—tender, grounded, vulnerable yet powerful—will stay with me.

• I’m escaping winter with a dear friend next week, but I’ll be back in March with more musings. I’d love to hear what you’d like more of—or less of —while I’m away. As always, thanks for reading, sharing and joining me on my writing journey.

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This much activity—even though mostly within the walls of my house—is unusual for me. Living with a neurological illness is mentally and physically exhausting. My brain receives multi-sensory input and then tries to process these stimuli, weaving through the damaged pathways of my central nervous system. By the end of an especially busy month, my walking becomes even sketchier than normal, my high tone muscle areas — my neck, pecs, lats — refuse to un-stiffen. My skin is so sensitive, even a light wind can throw me off balance. As a healthy person, exhaustion appears in a similar way: tired muscles, headache, a desire for silence. But to a person with a malfunctioning nervous system, the symptoms multiply.

Did I mention that my heart is full — that time with friends and family is medicine for the soul?

The Airbnb Effect

If my house had a heartbeat, it would be aflutter from the laughter and practical jokes (enter the massive Cialis tote bag currently on a tour of South America, and the toilet plunger styled as a trumpet). Then there’s the unexpected deliciousness of Nunavik gin mixed with Swedish elderflower cordial.

If my house could speak, it might say, “Is this what an Airbnb feels like, with its stripping of bedding and remaking again, its dishwasher on continuous cycle, the front door opening and closing to Door Dash and grocery deliveries?”

If my house could speak, it would politely request the host temporarily deactivate its listing.

If my house could collect reviews, they might read: “Five stars for hospitality, minus one for the cat hissing at us from the sofa.” Or: “Don’t be fooled by the quirky cocktails, globetrotting duffle bags and condiments from around the world. This host hasn’t left her home — let alone Toronto — in a week.”

Deactivating my Listing

This week, I find myself in recovery mode: writing in solitary, a candle lit, the fireplace on. The largest daily snowfall in Toronto’s history dumped a ‘Not Open for Business’ sign on my lawn. It’s so quiet I can hear Lilo purring from across the room.

At 4:30 p.m., and with the sun setting behind the clouds, I’d normally have to rise from my writing perch in front of the flames to turn on some lights. When we built our house in 2011, we thought the technology would last. But 2011 is a whole fifteen years ago, and we all know how quickly technology ages. Except my visiting nephew, in his divine expertise and patience for outdated electrical fixtures and defunct software, has reprogrammed my lighting system so I can access it once again, from my iPhone. So, no need to stand up, stretch and walk to the light switch.

Improved technology + increased accessibility = growing idleness. Oh the paradox.

Self-diagnosis

On more than one occasion, I’ve contacted my doctor and shared my diagnosis before he had a chance to examine me. He’s reminded me that he is the one who attended medical school, not me. But who can blame me for reaching into the depths of my oversuspicious mind and labelling my afflictions? The early symptoms of Transverse Myelitis were misdiagnosed as carpal tunnel syndrome so….

Recently, during a solo self-diagnosing session (just me and Google, Dr. M spared), I pondered my mild anxiety as winter settled. Reality kicks in: I must swap sleeveless tees for sweaters, shorts for full-length pants, and retreat from the sanctuary of my tree-filled yard to the indoors, accompanied by my winter-adverse cactuses, palms, and aloe plants. Together, with Lilo, we hibernate and half-curse the universe that placed us here—in Canada, with its social benefits, and progressive inclusion, but also its dreadful winters, which are not ideal for those with poor mobility or chronic illness.

Lilo and I don’t agree on everything. She refuses to venture outside past the door mat without a leash on. She’s more comfortable with boundaries and thresholds. Whereas I will venture down the street or a short car ride away with the lure of coffee, a good movie, a session with my physiotherapist, or the promise of sunshine. I’m the advanced form of household feline — an inside cat with occasional excursions.

Mild agoraphobia. This is my official self-diagnosis, by the way. It’s not new. It festered for the first time in 2008 when I was discharged back to my life after eight months in hospital.

But don’t worry. My agoraphobia mostly goes dormant by spring. And my door is always open for visitors.

A Call for Writers and Creatives:

What’s even more celebratory than this man’s acting credits, is that he achieved so much of his success after a near fatal apartment fire that resulted in the bilateral amputation of his hands, multiple surgeries and years of physical rehabilitation and bodily re-acclimatization.

Welcome to another instalment of the Little Flames Contributor Series—a space for stories of resilience, reinvention, and creativity.

PROFILE SNAPSHOT

• Name: Prince Amponsah

• Superpowers: Creating visibility where representation is limited. Turning trauma into forward motion.

• My Favourite Prince Quote: “So this is me now… I love more deeply than I did before … because you can’t do anything with pity. With someone feeling sorry for you. But with empathy, there’s a strength in that. It’s like dropping the ego and realizing its not about you.” (From the documentary Prince’s Tale, available on CBC Gem).

THE INTERVIEW

Melissa: Your life changed so radically in a single moment with the fire and the recovery process. I’ve been through a fracture of body in my life too, and I’m curious how you made sense of that instant shift.

How did you come to rationalize or frame that break in your life’s story so that you could keep moving toward your dreams rather than being defined by the trauma?

Prince: The shift was instant but the realization and acceptance of that shift was definitely not. I had to go through the steps of grief.

I needed to grieve the loss of my old life, the loss of my arms and my entire existence as I had known it till then.

But one perspective that truly helped me was choosing to look at my life in chapters, since birth I have been given the gift to live different chapters of life and this was the next one, though challenging, it was another piece of the story of my life that I had the opportunity to tell. How did I want that story to continue?

Melissa: In an issue of Now Magazine in 2017, you wrote: “I couldn’t even comprehend what to do during the time I was recovering. I couldn’t see myself going back to acting because I didn’t feel I had a place there. You don’t see a lot of people who look like me on the stage or on the screen, and sometimes you need those kinds of role models—to see yourself, to feel like you can be a part of it. And it can be very superficial as well, right?”

How did your sense of identity—both personally and professionally—evolve as you stepped back into theatre or screen work, and how did that evolution influence the kinds of roles or projects you chose?

Prince: Getting back into this business, required me to overcome my own fears and insecurities. And it was so easy to fall right back in love with the profession regardless of my appearance or disability. I also began to realize that I may be making a small difference through representation of disabled artists which I found empowering and in turn, encouraged me to continue to fight for more roles. And with that, I also believe, came a responsibility to choose roles with substance and proper character development to avoid playing a token role.

Melissa: Prince, your stage and TV résumé is impressive! You’ve been nominated for a Canadian Screen Award, played Barnardo in Shakespeare’s Hamlet in High Park, were a cast member in HBO’s Station Eleven, and most recently you appear in Apple TV’s The Last Frontier.

When you think about the visibility and impact of your work—from theatre to global platforms—what kind of legacy or change do you hope your presence on screen and stage creates, especially for other disabled or marginalized creatives coming up behind you?

Prince: I hope it becomes standard practice to involve disabled and marginalized creatives at every step of the process of creating art including roles of leadership and education. I hope it inspires inclusivity and encourages others to pursue their dreams and aspirations.

Lights. Camera. Action. And Beyond.

• Check out Prince’s acting credits on IMDB so you can plan your winter hibernation line-up, including the stunning documentary Prince’s Tale and his current role as convict and informant Henry Sickler in the action thriller, Apple TV’s The Last Frontier.

• Beyond the screen, Prince’s impact is felt just as powerfully in the lives of those who know him. Prince and I share a mutual friend, who reflected on their relationship: “He truly is a special person in my life. My career was always based on giving back to the community and offering support to those people who were going through very difficult times in their lives. Meeting Prince was a gift in so many ways to me both professionally and personally.”

A Note on my Interview Approach

I was asked recently about my interview approach for a potential blog essay. Unlike a traditional Q&A structure, I sometimes phrase my interviews as collaborative in concept. Meaning, the interviewee helps shape how the conversation unfolds. I come with a set of questions, but also ask: What feels important for you to tell me about yourself?

From there, the dialogue often follows unexpected and revealing threads. In that sense, the interview feels collaborative, even though the final piece is still written and edited by me.

If you’d like to be part of the 🔥 2026 LITTLE FLAMES Contributor Series — or you know someone whose work and life have been shaped by trauma, illness, or disability — I would love to hear from you. You can reach out by leaving a comment, sending a chat message, or contacting me at: melissawilliams204@gmail.com.

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But restraint is something that has gotten easier with age. As I enter another year without miraculous or medical recovery, restraint further embeds itself into my bones.

The unopened package of raspberry white chocolate cookies, blockaded by canned soup and staring at me from the back of the pantry? Probably safer left where it is. Logging into publisher portals on an hourly basis to see if the query status on my manuscript has changed from “received” to “in-progress”? Restraint is limiting myself to once a day.

The Staircase

So what can staircases teach us as we enter a new year?

Staircases have been a bit of a theme of my newsletters since I launched LITTLE FLAMES in June. But why am I so fascinated with staircases?

Until a few years ago, I was re-learning how to climb stairs, still envisioning reaching the top without extra hands or a pair of canes. Then came the last fall—my head against a concrete landing, a pool of blood, an ER visit, a three-inch scalp laceration, my third concussion. With each wince of the surgical staple, I considered the tension between my desire to conquer and the cost of taking these risks. With all the news surrounding the connection between repeat concussions and dementia, I wondered what all these head wounds might mean years from now. Restraint—unwanted and immobile—settled in my consciousness.

It’s maybe not a surprise, then, that I notice staircases that don’t behave as expected.

For one, staircases don’t always lead where you anticipate. And sometimes, they don’t lead anywhere at all. I think of the narrow Bermuda staircases my friend Tina and I captured on our trip over Labour Day weekend.

Bermuda is a limestone island. It has an abundance of dissolving barriers, stone worn down by wind and time. We came across two in Hamilton on a quiet Labour Day, while trying to locate a friend’s restaurant. We weren’t lost—Hamilton follows a neat grid, its roads angling down toward the sea—but most of the shops were closed and the streets were quiet.

Staircases are normally places where I stop, and others continue. But Hamilton presented two “nowhere” staircases. By contrast to the conventional structure, the nowhere staircase asks nothing of me. The steps end before they reach an apparent destination, and in that pause, I feel a quiet kinship with their stillness.

Clusters of tall grasses and rock-growing lichens fill the landings, covering the risers and emerging through cracks in the limestone. They persist where they find space, curling through stone and reaching for light. The nowhere staircase doesn’t demand ascending. It doesn’t promise anything by reaching the top. It only is, and in that form, I noticed the small, patient ways the world continues, whether I climb or remain seated as a viewer.

The Tea Cup

It occurred to me later that day, while Tina and I waited for a ferry out of Hamilton, that there was another way to approach the unknown, one that doesn’t involve climbing at all. We were cooling off with a pair of iced Earl of Grey teas, from one of the only cafés open that day.

As the tea leaves curled into shapes at the bottom of my cup, and Tina and I sat taking in a view of the harbour, I thought of my grandmother’s tea reading ritual. When the cousins gathered at her home over the holidays, she’d brew loose leaf tea and we’d assemble around as she examined the symbols and shapes forming in our cups. In this sacred ritual, she’d announce what the new year held for each of us. But often, amongst the well-defined forms and patterns, there’d also be blobs and clusters that didn’t shape into anything at all. These leaves refused to spell out answers.

The staircase and the tea cup are harmonic sisters—both offer a quiet lesson in patience.

Some thresholds are inevitable, the way one year transfers into the next. Others are meant to remain a mystery, at least for now. Pausing is as much a practice as any action.

The body and the calendar operate on their own terms. The year will advance whether I log in, step up, or seek guidance from the leaves left in my cup. I can wait. I can linger. In that pause, there is restraint—and an unspoken, patient teaching these objects offer simply by existing.

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This month, I’m spotlighting a local café whose inclusive employment model and accessible design left both my heart and stomach full.

PROFILE SNAPSHOT

• Name: Judy’s Beach Café

• Co-founders/Owners: Donna Shannon Paterson and Leslie Grant

• Team members we met: Cathie, Leyla, Erme

• Location: 2188 Queen St E, Toronto, ON M4E 1E6

• Menu: A locally sourced and varied menu including: fair trade/organic coffee, baked goods, vegan and gluten free options.

• Superpowers: Inclusive employment mission, Community-centric atmosphere

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Stepping (or rolling) into Judy’s Beach Café, which opened in 2025, feels like entering a friend’s cozy, thoughtfully designed living room. The space leans into the Beach neighbourhood’s relaxed vibe, with inviting seating and soft lighting that encourages people to linger and connect. It’s clear Donna and Leslie thought about how the space would feel for staff and customers.

But beyond its physical design, there’s a deeper emotional texture here. Judy’s is purpose-driven. And there’s a story at the heart of it.

The café’s namesake is Judy Shannon (1972-2024), Donna’s youngest sister, one of twelve siblings. Born with Down syndrome, Judy lived expansively—she danced, travelled, swam competitively, and sought meaningful work at a local florist.

Although Judy didn’t get to see how her passion for life inspired the creation of this lovely café, her spirit is unmistakably present, from the photo dedication wall 👇🏼 to the affirming atmosphere that shapes the space.

I wish I’d had the chance to know Judy personally. Her “trademark ‘zinger’ one-liners,” her love of swimming, and the fact that we shared a birth year tells me we would’ve gotten along very well.

My son Sam and I spent an unhurried visit at the café, talking with Donna and Leslie, then later with Erme and Cathie. Cathie plated our selection of treats —an almond croissant, a butter tart, a gluten free chocolate cupcake and a salted caramel cookie — with a bright smile and a shining pride in her work. And while Erme prepared our maple pistachio lattés, Cathie shared with us one of her goals: she wants to learn how to craft hot drinks herself. She’s been watching Youtube videos at home, and studying the baristas’ multi-step process.

What follows is my conversation with Donna and Leslie about workplace culture, autonomy, and what becomes possible when paid work is rooted in dignity rather than charity.

THE INTERVIEW

Melissa: During my visit, I noticed the atmosphere of shared contribution — baristas supporting employees with exceptionalities, everyone — including you both — pitching in with serving, customer engagement and tidying up. There didn’t seem to be a hierarchy, just a team working together. Did you cultivate this sense of collaboration and equality intentionally or do you think it happened more organically?

Leslie: Donna and I have a similar style of operating with a spirit of collaboration. And running a cafe is a team sport. Everything is everyone’s job, which means ample opportunity for our café assistants to start working in an area they feel comfortable with and branch out from there. We treat everyone the same, so all our employees feel valued and part of the team. We all do dishes and mop the floors. There is no hierarchy by intention. Our role as leaders is not so much to manage as to support. That said, it all fell into place rather organically.

Donna: As indicated by Leslie, it happened quite organically. It may have something to do with the time we spent showing (modelling) the various tasks to our café assistants (our special needs hires). As we all wear the same aprons, it is probably difficult for customers to know who is who. I might also add that when we hired our baristas, we emphasized our mission piece and had to ensure that they too were very much on board and that we would all be working together to make this work. The positive results was a collective effort by everyone.

Melissa: Another thing that really stood out to me was how employees were supported without being over-directed or micro-managed — like when an employee selected and plated my baked treats independently, with gentle guidance rather than instruction. You mentioned that each of your employees have different needs and strengths. How do you adapt training, support and expectations for each individual? What does autonomy look like for your employees with exceptionalities?

Leslie: Our ten staff with exceptionalities are all very different. That’s why we only have one on shift at a time. This way, we can really assess their strengths and comfort levels and individualize their training. Once they master a skill or task, we let them run with it. As you saw with Cathie, they let us know when they are ready for more. The one thing they all have in common is that they WANT to work! We teach them what to look for (Is there a coffee to serve? A dish to bring in? A customer at the till?) and then they are off. We have been impressed with the initiative they are taking.

Donna: We hired 10 individuals with unique needs. Our decision to have one café assistant on shift at a time means that there is always someone to guide and support them. It is so heartwarming for us to see others take the lead in ensuring that they are on-task, learning new tasks and being part of the social banter. Autonomy for many of them is being part of the entire clan. For some, it may mean coming on shift and not being shadowed for every task.

Melissa: Can you walk me through the government-funded training program — how does it work, and why/how Judy’s model differs — especially in terms of offering long-term employment rather than temporary training?

Donna: It is proving difficult for us to access government grants. Since we decided to provide long term employment, we may not be recognized as a training establishment which reduces our likelihood of meeting that criteria. We gave serious consideration to our current model and decided that like all of our hires, café assistants too should have the option to stay as long as it was a mutual fit. Nevertheless, we have not given up on applying!

Melissa: What impact does a paid job with expectations, responsibilities and tips have on employees with exceptionalities?

Donna: The impact is huge for them, their families, for us, for all of our employees and of course our customers.

Leslie: The smiles. The posture. The independence. The purpose. The confidence that comes from overcoming a challenge and learning something new. The joy of working in a supportive environment. We feel it too!

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Notes from Mel

• Donna and Leslie’s business model is grounded in dignity, patience and belief, a model I hope other small and large businesses can learn from and build upon. Donna describes their approach best: “We sincerely hope that folks will come in for great food and drink, a cozy vibe, and a warm supportive atmosphere where we can all learn new skills together.”

• Judy’s Beach Café is a registered charity with a goal of providing training and meaningful long-term employment to people with intellectual or developmental disabilities. Currently, federal and provincial funding for businesses to hire persons with intellectual disabilities is restricted to short-term (up to 18 months) “training” programs. Judy’s Beach Café hires with the intention that staff stay beyond the training period, and thus they don’t qualify for funding. If you’d like to make a donation supporting Judy’s purpose-driven employment mission, click here.

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#TorontoBeach #Judy’sBeachCafe #DisabilityAwareness #LittleFlames #CollaborativeInterview #ContributorSeries

This piece traces how I reconstructed the first hours, days and weeks following my sudden paralysis, the material that forms the early chapters of my memoir, Little Flames Under My Skin.

It’s an essay about building a narrative out of body and memory fracture, and turning toward the past instead of away from it. It’s about filtering grief from a mountain heap into grains of sand I could hold.

“It was in the early writing days, in the compiling of memory, that I became aware of lost periods, of semi-conscious uncertainties—what I refer to as my delirious haze of narcotic eclipse.” — MW, The Brevity Blog, December 5, 2025

I’d love for you to read it, especially if you’re someone who has ever tried to make sense of the forgotten parts of your life—illness, trauma, or simply memories fragmented by time.

Thank you for reading and for being here. Your presence makes sharing pieces like this feel less like exposure and more like community. ♥️

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Notes from Mel

• I dedicate this essay to my dad, Peter Williams, who passed away on December 4, 2011. The man who flipped his retirement bucket list upside down to sit by my bedside for eight months, then upgrade only marginally to become my personal chauffeur. The man who reminded me each day until his death, that my life was worth living and fighting for, and that devotion is immortal. Forever my reminder, forever in my heart.

• Brevity was one the first literary magazines I was introduced to by a creative writing instructor. Both its blog—which publishes essays on craft and the writing life—and its magazine—which produces concise creative nonfiction, have been my north stars as a developing writer. The editors’ commitments to sharp, distilled form is a testament to how a single page can hold an entire life, and how a heart can be forever changed by a single story. I’m deeply grateful to be included in a magazine I’ve admired from afar, until now.

• I am working on two ‘contributor series’ interviews I’m super excited about. In December, I’ll share with you a local café which hires and champions persons with exceptionalities. ☕️ And then in January, I’ll share my interview with an actor who came back from an unimaginable accident to stage and screen success, making space for other disabled creatives. 🎬

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Meet Maryann Kerr—mother and author whose late ADHD diagnosis reframed her understanding of creativity, empathy, and leadership.

A bit of history:

Sometimes you meet someone and you just know. You like them instantly. You sense they are a kindred spirit, as if hand-selected by the cosmos. And they share the values you’re trying—sometimes imperfectly—to hold: kindness, honesty, courage.

That’s how I felt about Maryann when we first met. She’s an Ottawa girl originally, which is always a promising start. But more than that, she’s had some tough losses in her life, and has somehow emerged with a gentler heart.

Very few people—family included—have read my memoir. I’m superstitious about sharing it widely before I secure a publisher. The handful who have read it were chosen deliberately—writing mentors, discerning editors and people whose lived experience offered a unique vantage point.

Either Maryann offered to read it or I asked her if she would (memoirists experience foggy patches). Either way, my book had already been edited down to its desired word count and submitted to a couple of literary agents.

But I was feeling stuck and discouraged.

The feedback returned to me echoed similar refrains: Memoir is a tough sell without a large social media platform (i.e. come back when you’re at least marginally famous). There’s more to say about that in a future post, but for now, let’s get back to Maryann.

When Maryann asked me to email her my 285 page manuscript, I screamed inside: “Yes, yes, a million times, yes!”

Why?

1. She didn’t know me well enough to feel obligated, which meant she could be objective.

2. She has built a strong social media platform through steady writing and public dialogue; she was willing to guide me through this awkward phase.

3. Because my book includes complicated moments involving my children, I valued her background and the additional perspective she could add: at the time, she was working with Children’s Aid Ontario, and was a caregiver to her husband through his cancer treatment.

And so it feels fitting to share her story here, and now.

PROFILE SNAPSHOT

• Name: Maryann Kerr

• Occupation: Author, Consultant, Coach & Social Impact Leader

• Passions: Family, feminism, and building workplaces rooted in empathy and equity

• Superpower: Turning ADHD into a force for creativity, justice, and connection—proving that difference is often the source of our greatest strength

  

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THE INTERVIEW

1. Mary Ann, you’re an author, mother, caregiver, non-profit leader, a steadfast friend, and now you’re launching Women’s Leadership Initiative. Yet you’ve also shared that at times you’ve felt like “too much” and “not enough.” Why do you think so many of us—especially women—struggle with those feelings, even when our lives are filled with accomplishments?

Sheesh! Talk about coming out of the gate with a tough question Mel! That said, I have some ideas on where the “not enough” and “too much” feelings come from.

My generation of girls/women were raised to be in competition with one another and to take up as little space as possible. I remember listening to America Ferrara deliver her monologue in the Barbie Movie and seeing all the nodding heads around the theatre. We are held to unachievable standards that are amplified on social media, and this leads to feelings of not being enough. There are fine lines that society sets around everything related to our body images from weight to our aging processes – too fat, too thin, too much Botox, not enough Botox – we really can’t win.

On the other hand, if we speak up or take up space, we are labelled with words that are positive when applied to men (i.e. being ambitious or outspoken) but are seen as negative for women. We are expected to be nice – but not too nice. We are expected to have ambition but not too much. We are expected to be liked yet if we achieve any level of success there is a line up of folks who will dislike you simply for that. So, at times, no matter how accomplished we might be, we are bombarded with messages telling us we are either too much or not enough, and it is difficult to ignore.

She adds:

“The older I get, the less I care what other people think. That said, at points in our lives, what others think has lots to do with our ability to succeed in certain situations – so it can’t be completely overlooked – as much as I wish it could."

2. You’ve spoken openly about being neurodivergent and how you love to “feed your brain.” What practices, mindsets or supports have helped you turn ADHD into a source of creativity and leadership, rather than a limitation?

I have always lived with a ‘growth’ mindset. I see setbacks and challenges as opportunities. I don’t believe in failure, only in learning opportunities. I’m inspired by people who overcome substantial barriers and thrive. So, learning that I had ADHD, at the ripe young age of 60, was an incredible gift.

Suddenly so many things in my life made sense; the fact that I can’t sit still, my lack of filter which can be both a strength and a challenge, the way I’d always felt misunderstood and wondered why I didn’t fit in, my creativity and strong sense of justice. Now I have this gift of knowledge that my brain works differently. Understanding that my brain is what sets me apart – only 3-4% of adult women in Canada have ADHD – gave me a fresh start. I read articles and books on the topic. I talk to a coach who specializes in ADHD. I take medication. In June this year, I returned to a regularly scheduled exercise program. I practice good sleep hygiene, and I take breaks when I need them. I’ve learned what environments work for me and I create the right type of workspace. Sometimes I love to be in my office alone, other times I need the body doubling provided by a local coffee shop or even my dining room table.

“I used to run but my knees don’t like that so much. For me, running was my meditation. It was when I would work through the multitude of priorities screaming for attention in my brain. Writing is my new mediation. It brings me a sense of calm and peace.”

3. What words of wisdom or encouragement would you like to leave with readers navigating their own seasons of change and self-definition?

Esther Perel said, “Most of us will have 2 to 3 marriages in our lifetime. For some of us, those will be with the same person.”

I wholeheartedly believe this. I also believe it is true about how we are in relationship with ourselves. If I’m honest, my husband has been married to at least 4 different people in the 30 years we’ve been together. And he wasn’t the only one who chose to stay with my various reincarnations, I had to get used to her myself. (Choosing to stay with his reincarnations is an essay for another day!)

The tough times are when something that is so deeply ingrained in our identity starts to change. For me, the idea that I might never lead another organization or lead within another organization – primarily due to my age – is really tough. In these moments, I encourage myself and others to be kind to themselves; to get out into nature; to take time to listen to the universe and their hearts; to grieve the loss of what was and consider what comes next.

“We are always learning and unlearning and relearning. We are always becoming. I think we need to guide ourselves through the multitude of life’s transitions, big and small. They are a constant and consistent signal that we are still alive.”

Notes from Mel

Maryann reminds us that lived experience is a form of r-evolution. It’s never too late to reincarnate as different versions of ourselves or return to school (she finished her master’s degree at age 55).

Click these links to read a bit more:

• The Women’s Leadership Initiative - Maryann’s current mission

• Tarnished: Let’s rethink, reimagine and co-create a new social impact sector - Maryann’s book

• One day her whole life changed. Reading her story changed mine. - Maryann’s reflection of our meeting and her beautiful review of Little Flames Under My Skin.

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What we carry—metaphorically or in literal terms—tells our stories before we even speak a word. It’s not just about what we need, but what we can’t quite bring ourselves to let go of. Or, in reverse — what we must release to make room for what we need. Maybe that’s why peeking into someone’s bag feels like reading a secret chapter of their life.

And so, I started wondering: what do people carry when they’re in the thick of life’s big transitions—when the body breaks or the heart bends? What becomes essential then?

Think of it as ‘self-care for those in repair.’

According to Global Self-Care Federation, self-care “is the practice of individuals looking after their own health using the knowledge and information available to them. It is a decision-making process that empowers individuals to look after their own health efficiently and conveniently...”

If I had to rewrite this from a personal standpoint, it might read:

Self-care is the daily act of tending to the parts of myself that have been cracked open by illness. It’s about making choices—saying “no” when I need rest, and “yes” when spending time with loved ones renders healing. It’s learning what to carry, what to release, and what to literally tuck in my bag just in case I become stranded on a desert island.

When living with illness or disability, the bag you carry everywhere becomes something between a self-care package and a survival kit.

When I asked a few friends—fellow travellers in the strange world of bodies that don’t cooperate—to show me what they carry, they sent photos.

Their bags contained:

• Personal fans, essential oils, and prescriptions. Pain management on a scale of 1 to 10.

• Car keys, gift cards and cash. Easy access; quick exit.

• Adapted utensils, reusable straws, cups with lids, hand splints. Mobility on a smaller scale.

• Books and iPads. Because sometimes we all need medicine for the mind.

• Deodorant, lip gloss, nail polish, makeup and hand cream. Apparently the deserted island we land on might include a spa or a Tarzan.

• Emergency snacks. Isn’t chocolate a unanimous survival item? (Bagel seasoning — why not?)

Since my original diagnosis of Transverse Myelitis in 2007, I’ve found myself back in the hospital three other times: twice for concussion and stitches after a fall, and once for a six-week stay that included two emergency abdominal surgeries.

These days, I keep a “just in case” hospital bag ready too — the kind someone can grab if I’m suddenly thwarted back to the ER (which can feel a bit like being stranded on a desert island after a plane crash).

This bag is far less exotic than my everyday essentials: things like underwear, a fresh toothbrush, the complete series of Downton Abbey, and hair detangler (because after my last hospital stay, my hair could’ve used its own discharge summary).

So, tell me:

I’d love to see what you carry. What’s one thing that always travels with you — or one thing you’ve learned to leave behind?

Drop a note or photo in the comments. 👇🏻👇🏻👇🏻👇🏻

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Notes from Mel:

I’ve been lucky enough to be interviewed twice this month!

• My beloved writing mentor, generous coach and friend Becky Blake recently interviewed me, along with three other non-fiction writers, for her newsletter Truly Important. Click below to read.

Truly Important by Becky Blake

Newsletters: Should You Have One?

I started this monthly newsletter a year and a half ago. My initial goals were to keep in touch with some of the amazing nonfiction writers I work with as a teacher and editor, and to create a venue to showcase some of their work. My readership has since grown to include a wider community of CNF-lovers and helped me to connect to many folks who share my…

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a year ago · 10 likes · 2 comments · Becky Blake

• The Publication Coach Daphne Gray-Grant interviewed me about my writing process. 👉 Click here to read our conversation.

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October 19-25 is Respiratory Therapy Week, and I wanted to shine a light on these frontline heroes. This month, I spoke with some of the team members that guided me through my worst days at one of downtown Toronto’s busiest hospitals.

Meet Hilary, Pam, Paula and Mira—badass healthcare professionals, advocates for the voiceless, and bedside comedians.

PROFILE SNAPSHOT

• Occupation: Respiratory Therapists (RT’s)

• Superpowers: Calm in emergencies, resuscitation, teamwork, empathy.

THE INTERVIEW

1. Hilary, how would you describe your role to someone who’s never heard of it?

An RT is there for a patient’s first breath and for their last. We are there to support patients and their families in often their worst moments. From providing oxygen, to breathing tubes, to managing their lungs while on a ventilator, we are the experts you want at your bedside. We are your advocates when you do not have a voice. From resuscitating newborns to adults, we are there to restore life. We thrive on adrenaline but are often the calmest clinicians in the room.

She adds:

I feel like my patients are my extended family, and I try to care for each how I would want someone to care for my family.

2. Pam, during high-stress situations (like a code blue, pandemic surges, or ICU crisis), what keeps you grounded?

RTs are trained to respond to emergencies. In a crisis they rely on their clinical knowledge to intervene with clinical situations that may arise. Another important component of this is they rely on their teammates during emergency situations. In these emergencies there are clear roles and we train together as a team for specific scenarios. Knowing you’re not alone keeps you grounded. Doing what we do has purpose and meaning.

3. Mira, in my experience, there were times when the numbers said I wasn’t breathing well, but my body told a different story—and vice versa. How do you balance what the data shows with the individuality of each patient’s ability to breathe and recover?

As a respiratory therapist, I’ve learned that even though research and data guide best care for our patients, they don’t always capture the whole story. Sometimes the odds say a patient won’t recover and come off the ventilator, yet with personalized care, compassion, and persistence our patients often surprise us. Our role is to see beyond the numbers and provide care to the individuals in front of us remembering that human resilience is complex to quantify.

4. Paula, is there a patient encounter that has stayed with you, and why?

It is not just one patient that comes to mind but rather it is the collection of life lessons gathered from each patient I have encountered over the years. As an RT, you get to be present for really important moments in a person’s life. On a daily basis you get to bear witness, first hand, how an illness can ravage a person’s life and those of their family. You also get to experience and witness the love of family and friends as they rally around your patient. You see first hand the strength of the human spirit as the patient fights to get better. You are in awe of the team you are a part of whose sole purpose is to work together and try and save the patient’s life. It is all of these moments with my patients over the years that have directly shaped both who I am as an RT today and also who I am as a mother, wife, friend, daughter, community member and individual.

She adds:

I have come to deeply understand the importance of kindness, empathy, human connection and the strength of the human spirit during difficult times. I feel quite honoured to be a part of it all and I am thankful for every patient interaction over the years and the life lessons they have brought.

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Notes from Mel

I spent six weeks relying on a mechanical ventilator to stay alive—first intubated, later through a tracheostomy. In my memoir, breathing becomes both the first and last tether to my former self. In my book, I return to the last breath I took unassisted, before my world spiralled into numbness and sleep—and to the uncertain days that followed, when we wondered if I would ever breathe on my own again.

Through those flickering, tumultuous days, I remember vividly the people who kept my lungs working—the ones who adjusted the ventilator’s settings with the precision of astronauts navigating the stars.

I also remember how they carried me as I progressed through the stages of ventilator weaning. They treated me not just as a patient, but as a person with a life before and one who yearned for a life after. Skilled in life-saving interventions and grounded in empathy, they brought both precision and humanity to their work. Even in the toughest moments, there was always room for a joke—the kind that lifts you, briefly, from misery to laughter.

Thank you to these amazing women, and to all of our healthcare heroes.

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Resources & Links

• Interested in a career in Respiratory Therapy or just want to learn a little more? Check out the Canadian Society of Respiratory Therapists website.

• As Mira describes, no two people breathe the same. Respiratory therapists know the data tells only part of the story; healing lives somewhere between the numbers and the person beside them. For a deeper reflection on that idea—the individuality of breath and the strangeness of survival—I wrote about it in “Anomaly”, published in Five Minute Lit.

#RespiratoryTherapy #RTWeek #RTWeek2025 #HealthcareHeroes #HospitalLife #PatientStory #Resilience #RecoveryJourney #CreativityInHealing #DisabilityAwareness #LittleFlames #Fiveminutelit

Each time I need to replace something—a liner, solar cover, heater, chlorinator—I consider filling the pool in altogether and building some new backyard oasis (suggestions welcome). But when I add up the cost, I recoil, surrender, and buy the part required to keep the pool afloat, generating at least a few more years of life for it.

The pool feels like a nostalgic artifact from my before-life. Like skinny jeans, push-up bras, and strappy heels, I remember it fondly, but it will likely never belong in my world again.

Last season, the grandson of one of my neighbours came over for his annual dip and slide. As always, he drew me a picture afterwards as a thank-you. After years of multicoloured creations (which gather on my fridge until their corners curl), he decided to switch it up.

“What’s your favourite colour?” asked my neighbour—the boy’s grandparent. “O. would really like to make you something special.”

“Grey,” I blurted.

Grey, the colour of rain clouds, of concrete, of depression.

The word slipped out before I considered what an eight-year-old might think of the woman in the wheelchair whose colour choice is grey.

“But don’t tell him that,” I confessed quickly. “Tell him it’s green. My favourite colour is green.”

I’m not one for self-analysis. I don’t read books on personal empowerment (how can there be 250 pages on mindfulness or self reflection?) But after saying “grey” out loud, I couldn’t help but wonder: what does it mean when someone’s favourite colour is grey?

According to my first Google result:

“If this is your favourite colour, you are neutral about life, often to the point of being indifferent. You may be a self-sufficient, unemotional, dedicated worker in your business life and a lonely, indecisive person in your private life.”

So dull, even I don’t want to hang out with myself.

The same site directed me to another link: The Colour of Sex—a downloadable ebook on what your favourite colour means for you in the bedroom.

I didn’t click. No thanks. Not after that riveting personal assessment.

Once again I ask: How is there an entire book (or ebook) on this subject?

Changing Hues

For as long as I can remember, grey was my colour: the grey of a concrete path leading into the woods, the grey of a sky-scraper stretching into the sky, the velvety foam of Cream of Earl Grey tea, the fuzziness inside a winter jacket. The grey of pause and in-between. Good greys.

Ninety percent of my wardrobe lives between black and white. My bridesmaids wore silver. It rained on my wedding day.

Maybe grey was trying to tell me something?

Lately, I’ve started looking elsewhere for colour. The pool sits quiet, but around it—through cracks in decking and flagstone, in my front gardens and pots—green pushes through. Even the cat, bored of the pool, stalks life among the weeds and grasses.

Now, if asked, my answer will be green. Saying it makes it real: the blue-green of my children’s eyes, the turf of the soccer field they love, the green of avocados and margaritas and tennis balls. And in memory: my father’s checkered green shirt, the one he wore by my childhood pool, content in a moment of summer.

When I look long enough, I see fifty shades of green. Not grey.

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Notes from Mel:

• October is Respiratory Therapy (RT) month. For my next contributor series, I’ll interview a few of the clinicians that guided me through the six-week period when I relied on a ventilator to stay in this world, and we’ll learn a little about what it means to work on the front lines—where life and death mingle.

• My website is live, thanks for designing Cole Teehan :)

• If you haven’t had the chance to check out my interview with U of T School for Continuing Studies, click ⬅️ to read it!

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Loss has its downs and further downs, mainly low, lower and lowest. Sometimes you’re so close to the ground, you can feel the cold breath of stone, the earth’s heartbeat under your palm. Are you sinking or simply being pressed to where you began?

Moving through loss — an illness, a loved one’s death, a relationship, a career, all of the above, simultaneously, suddenly, or more slowly, like one domino falling on the next — you wonder: Will it ever end? And when it does, will I rise again?

When my life was in the throes of loss, and I still needed so much physical assistance, immersing in nature was the last thing on my mind. I was just trying to survive: get the kids up each morning for school, ensure we were all bathed and fed, subdue my physical pain with physiotherapy and medication, stomp out my emotional anguish by being too busy to think.

But as I began moving toward more independence, I found myself seeking out small, living gifts: a new plant or a bouquet of fresh flowers, potting an herb, turning to a book set in nature (see ‘Notes from Mel” below for a few of my favourites).

I began to make little trips alone. And as it turns out, these were grand milestones of freedom: an hour sitting outside by my garden listening to the sparrows chirp, a solitary wheelchair trip down to the beach, taking the streetcar to meet my university kid at Grange Park, adjacent to his campus. I’d slip in my ear buds, snap on my seatbelt, don a pair of sunglasses and zip down the street, my own private escape.

I’d forgotten what it felt like to sit in my own silence, and hear nothing more than my own breath, the static of city as if white noise, the hum of activity beyond.

As someone living with mobility challenges, immersing myself in nature isn’t always easy or practical. I will likely never get to Machu Picchu, the Swiss Alps or even the Appalachians. I will live vicariously through others and imagine these experiences.

Yet I’ve learned that I don’t need a grand adventure to feel re-centred. Glimpses of green, a patch of sky, or the feel of rain on my face can re-root my perspective and refill my sense of gratitude.

I’m here. I’m alive. That is enough. I hope you know that you are too.

Notes from Mel:

• My interview with U of T School for Continuing Studies is live. ⬅️ Click to read it! In it, I discuss the origins of my writing journey, and rebuilding my life after loss.

• Stay tuned for my upcoming interview with Sydney Blum at The Intuitively Aligned Podcast, coming out later this fall. If you want to add a little joy to this otherwise chaotic world, give her ⬆️ podcast a follow.

• Crossing my fingers as this year’s judge, award-winning author Cheryl Strayed announces the winner of the Sue William Silverman Prize for Creative Nonfiction! 🥵🤞 (My memoir Little Flames is a finalist!)

A few of my favourite nature-infused books:

• Two Trees Make a Forest: Travels Among Taiwan's Mountains & Coasts in Search of My Family's Past by Jessica J. Lee

• Wild: From Lost to Found on the Pacific Crest Trail by Cheryl Strayed

• Medicine Walk by Richard Wagamese

• The Serviceberry: Abundance and Reciprocity in the Natural World by Robin Wall Kimmerer

• A Walk in the Woods by Bill Bryson

• Into Thin Air by Jon Krakauer

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