I imagined that the first visit to the Ottawa Hospital’s ALS Clinic would be terrifying. We have so many questions, and so few answers, so we were grateful to the staff and doctors for working hard to put us at ease.

The visit confirmed what we already knew — that Scott has ALS and he will die from it, maybe not in the coming months but in a relatively short period of time. The ALS team’s job is to make his transition as comfortable and seamless as possible. So they offered up an array of options for letting him live a full life, with limitations. The ALS Society thankfully offers all the motor sports — walkers that allow the patient an opportunity to walk or sit as they are able as well as transport wheelchairs, electric wheelchairs, even ones that help to lift your butt out of the chair. Hospital beds are on offer as well as all sorts of accommodations for bathrooms and the kitchen.

There is no paperwork, the stuff just lands at our place free of charge on loan. It’s pretty awesome really. And the staff are immersed in the ALS world of challenges so we don’t have to be.

What they can’t offer, I realized when I got home, is any sort of solution for us to be able to afford the ALS lifestyle. We realized we were now living in two worlds: one with all the toys imaginable, and the other in an economic horror story.

Scott hasn’t made the progress he had hoped, so he will have to take an extended medical leave from his job. That means, in two weeks, we will lose a significant amount of income hopefully in the short term, but realistically in the long-term. Patients over 70 lose all rights to disability benefits, which is cruel and unusual punishment for people who have paid into them all their lives.

His disability is also giving me real life work challenges because, even now, he can’t be left alone for more than a few hours.

In other words, dear friends, the life as we know it just got blowed up, real good.

We can manage for a while, and subsidize our budget with some savings. What’s eating Gilbert Grape right now is we have no idea what path the ALS will take. The nurse said one guy was diagnosed with ALS and was dead in a month. Most others live between two and five years. The lucky ones live longer, though they live permanently in various stages of paralysis, along with fun stuff like feeding tubes and breathing apparatuses.

“What do you hope for?” I asked Scott over dinner last night. “Long or slow?”

“I want it to go quick.”

I nodded.

“This is your life,” I said. “We’ll do what ever you want.”

We have short term worries, mostly around the things that our finances will have trouble covering. For example, we will soon have to fork out $1,300 for snow removal and shovels, otherwise, Scott will not be able to leave the house for medical appointments. Wheelchairs are great but they don’t come with snow tires or chains.

We will soon need to cover all medical expenses that are now paid for by his work benefits, which he will lose if he is forced to retire. And we will have to deal with parking fees, and potential vehicle repairs on the Forester which is aging out right now. (On this matter, please don’t tell us to use ParaTranspo. That’s just insulting. I mean, if we don’t have snow removal how is the driver going to get Scott down the walkway and into the van?)

I’m trying to figure this all out, not looking for pity, but it is highly stressful dealing with a fairly depressed human, a frantic and anxious dog and a house that never seems to want to clean itself. I’m considering doing some kind of fundraiser to pay for all the extra costs, which I will tell you about soon.

People often ask me what they can do. I have been saying, there is nothing to be done, but I’m realizing that donations would help. Maybe to pay for snow removal, or dog walking, maybe just an Amazon gift card to pay for all the assistive devices we are going to need or boots that fit legs too swollen to fit into traditional fancy footwear.

For now, I thank my paid subscribers for helping ease the burden. I promise there will be some interesting content coming up. I’ll try to make it entertaining, though I can’t promise not to be sad. But every subscriber, free or paid, and every share, provides me with a bit of a lift in my spirit, and a reason to be.

So thank you, on behalf of Scott and Viggo, my little ALS family and wants to help.

I am happy to know there is a community out there who cares.

I spoke recently to Jeanne Beker, Canada’s queen of Canadian fashion culture, who said something very profound to me. Speaking about her breast cancer diagnosis, Jeanne talked about the importance of a person’s outlook when faced with a serious illness.

“You can’t change the situation,” she told me. “But you can change your mind.”

In other words, even though there’s nothing you can do, you can change how you view the situation and act accordingly. If there’s nothing you can do, there’s nothing you can do, so just make the best of the hand you’re dealt.

She learned this from her parents, who were Holocaust survivors. Jeanne’s mom watched her entire family perish before her very eyes. After the war, she and her husband moved to Canada and made the absolute best of the life that was given them. Their children wanted for nothing, and were encouraged to reach for the stars.

Jeanne did everything right. She didn’t just reach for the stars; she danced with them. She got breast cancer anyway.

Instead of choosing darkness, she chose light. She got up every day, and put on some lipstick and a jaunty cap and went to every gala. She found a new love, and a new community. Now she’s happier than ever.

She took chances, she defied gravity, she got on with it.

I carry Jeanne’s words with me as we get set for a marathon day of medical appointments tomorrow when Scott gets his ALS results back from the doctors. We’re on a path, that’s for sure, and it’s easy to get stuck in the mud like a bike in a catastrophic rainstorm, spinning our wheels. For weeks, we’ve been living in a kind of purgatory, not knowing what to do, fearing the terrible journey we’re in for.

Tomorrow, we will get answers.

I’ll admit to spinning my wheels of late, to giving my nights over to worry, and frantically organizing during the day to make sure we are ready for every possibility.

But this past week was different. This week, I woke up to a voice in my head that said, “it’s out of your hands. There’s nothing to be done so just roll with it.”

It’s not about the situation, it’s about how you react to the situation. It’s much better to take each day at a time, to savor each victory, and mourn the losses as they come. Do things that make you both happy.

Today, I got up and got busy in the kitchen. I made a diner breakfast with ham, eggs, potatoes and baked beans, and brewed a pot of coffee. I finished a story I was working on, and then made a pot of soup. This afternoon, I will put a chicken in the crockpot.

Because cooking makes me happy, and eating makes Scott happy.

Today, we will use the good dishes.

Today, we will have a nice dessert.

Because there is nothing we can do about tomorrow. It’s not here yet. No need to worry.

Worry is for tomorrow.

I’m reminded of the words of Pope Francis who had a simple message for those of us facing an uncertain future.

Avoid the paralysis of the living dead, who have no life because they are afraid to take risks, to make mistakes or to persevere in their commitments. Even if you make mistakes, you can always get up and start over, for no one has the right to rob you of hope.”

Tomorrow, we will go back to square.

If the news is bad, we will go to McDonald’s for breakfast. Come home and take stock. Try to find a way to make the day matter. Hug the dog, keep the faith.

Remind ourselves that we are still here. What we do today matters.

We are not the living dead.

Not even close.

There is just one way to finish this. Once and for all.

I’m suggesting a battle on the ever-treacherous Lake Ontario, filled with man-sucking lampreys and slime, for the rights to the name of our beloved lake. Not to worry, fishermen and windsurfers, sail boat owners and ships carrying Nike sandals. There will be no guns or drones. There will be no bored troops wondering where their care packages went missing.

Just a simple pitched battle between the biggest tool we have in our toolbox, and the even bigger one they have in theirs. A fight to the end between Doug Ford and Donald Trump in a sailing vessel of their choice. Doug can deck out an OPP motor boat, with his signature decal, Ford Fest, and Donnie can have a catamaran with pictures of himself over its extra wide load.

The challenge: an eat off or fuck off challenge.

Each of them will be armed with what they like best: Big Macs, fries, and Diet Coke. They will be made to sit their extra- wide loads down and chow down. The first to puke loses. Extra penalties for shitting their pants.

Now that’s a Canadian contest if I ever dreamed one up.

Elbows up, Dougie!

The good news today is that my husband finally qualified for the Canada Disability Tax Credit (DTC). The bad news is that we had to pay a third party almost $1,400 to get it.

While I consider this a “win” during a terrible and traumatic season, a time when Scott has been so disabled he can’t walk to the car or hold a dish, it’s also a bitter pill to swallow because it is a win with strings attached for someone facing an certain future.

At 70 years old, he no longer qualifies for any sort of disability payment, and is at risk of losing his job because he will be limited as to what he is able to do. For example, Scott cannot walk more than a few feet even on a walker at the moment, not because of the recently diagnosed ALS but because he is recovering from double knee replacement surgery.

So if he loses his job as a security guard, he will be forced to live on a small pension from a former employer, his Old Age Security and Canada Pension Plan. Add to that the fact that I am no longer able to work outside the home because of medical appointments, and attending to his day-to-day needs so we’re counting every penny.

We have some savings, and we have some debt — not much more than many people eeking out a living as middle class seniors — but the savings are starting to dwindle. Add ALS to the mix, and the result will be undoubtedly catastrophic for us.

People with disabilities have a lot of extra expenses, as I am finding out. For example, we have to hire someone to clear the walk and the driveway, and a lawn service because neither of us is able to perform this function.

I have osteoarthritis in both of my knees, psoriatic arthritis, and issues with my feet. While I can take out the garbage, look after the dog, and get groceries, I am left physically spent and in pain by the end of the day. (I should have invested heavily in Advil stock!)

Add to the yard expenses, rental for wheelchair, a fee for nursing care for Scott’s feet and massive parking bills at the hospital. If he loses his job, we will lose our extended health coverage so all of that will come out of pocket. Not to mention many of the drugs we currently get through extended insurance.

ALS (All Life Sucks) will add substantially to that burden, as most of you can imagine even with the supports offered by the government and the ALS Society.

Right now, we are treading water waiting to find out how far Scott’s ALS has progressed, and whether he is eligible for a clinical trial which offers hope that the disease will slow down with new meds. We’ll find out about all this next week, and will be able to make some decisions like whether we will have to move, rehome the dog, or just wander into the bush somewhere and not come back.

All this to say that the DTC is helpful because Scott has some back taxes he owes from the pittance he makes working at a near minimum wage job — just to give us a bump in our cost of living.

What’s eating at me is that we had to pay a private service and doctors to do something we could not — get approval on the DTC. The company charges 20 percent which means that he will reduce his tax bill but we still have to pay the service out of our own savings.

We should not have to do this. Why can rich people expense accounting fees while the ill and infirm have to swallow a bill just to get what is rightfully theirs?

I applied for this earlier in the year, on my own, and we were turned down even though my husband had to crawl up the stairs and couldn’t even make his own meals. Our application was clear, and no one called us to clarify what we might have done wrong. Instead, all we got was a terse letter saying Scott didn’t qualify.

Even our doctor was perplexed.

Look, I am a super smart and competent person who is used to filling out government forms. I managed to get my friend Jennette the DTC when she was terminal but unfortunately the cheque arrived after she died.

Not cool.

I am still grateful to True North Disability Tax Services for making this happen for us. I highly recommend their service. It is a lifeline for many people. And I’m happy to pay them for giving us a form of justice.

As I learned from my painful divorce, sometimes you just need to pay a fucking lawyer to get what is yours.

And all I can say to those applying for the DTC, don’t give up. You know yourself or your spouse or your ma or grandma. Trust your own instincts.

Get professional advice and help, even if it hurts.

Tobacco Lake (aka Lake O’Neill) has always been a place of healing for me. And yet my relationship with that lake started so horribly.

On the first day of our first rental, almost 15 years ago, we realized we had forgotten the pills for my beloved Gordon J. Blackstone, an ornery black fat assed pug who had already survived stones in his bladder, pancreatitis and a stroke. The pills were for his thyroid.

I sent Scott back to the city with Gordie to see the vet. Scott rang to say the vet recommended euthanasia. This news was particularly hard for me because I’d just lost Ming, Gordie’s pugmate, a few months before. Ming had died of respiratory failure during dental surgery. Gordie had a stroke while also undergoing a dental procedure on the same day.

Needless to say I will never listen to a vet recommending dental surgery again.

While I waited for Scott to return, I walked into the lovely sandy lake and looked up at the mountain (or is it a hill?) and wept enough tears of sheer sorrow to make the lake rise three inches. I stood there for what seemed like forever before I staggered back to the cottage, where I met the proprietor, Geri, who tried her best to comfort me.

“You need to get another dog,” she said. “You’ll see, everything will be better.”

Geri is a super dog lover who generally keeps at least two older rescues at her place across the lake. She knows first hand about love and loss but she’s also a practical woman who always keeps a grave dug for the next dog.

Since Gordie’s passing, Geri and I have become good friends, and each year we commiserate over the many losses we’ve both experienced. We also laugh like hell about how ridiculous life can be.

Since my first visit to Tobacco Lake, I have come to see it as a place of healing. It is there that I took my good friend Jennette within days of her terminal diagnosis. We were able to sit on the porch, enjoy cocktails and meals (hers blended) while we watched the colours change from grey and blue to rust and brown within minutes each day at sunset.

I tried to convince Jennette that we should have a Viking funeral. We would put her ashes on a makeshift floating device and fire flaming arrows into it, as we toasted her ashes and reminisced about her life and legacy. Jennette thought that was hilarious. And that is why Jennette and I were friends.

Over the many years, we have lost wonderful dogs, including Finnigan the tree trimming black lab, and my beloved Sophie the pug. Finnigan loved splashing around in the lake with Scott, while Sophie enjoyed snorfling around the neighbour’s cottage in search of scraps. And of course, she loved boat rides.

Our dog du jour, Viggo mostly likes to bark and snarl at other dogs, and Scott has to keep him on a leash at all times.

I can’t imagine going on any other vacation. Tobacco Lake is my happy place, and my sad place. It’s where I take stock, and reflect on the many treasures I have been given in this life and sometimes rail against God when she turns her back on me.

This year, we’ll miss the lake altogether because of Scott’s illness.

I am not sad. I can still revisit the lake in the images we’ve taken over the years, and remember all the great times, dogs and people we have lost, and new friends we have made.

I had hoped that this year we could celebrate our 70th birthdays together, but God had other plans for us. I wish I could be there to shake my first at her once again, and pray for a miracle.

Oh well. There’s always next year, right?

I have to believe that.

We should be at the lake this morning, just getting up, brewing some coffee, taking Viggo out to chase the chipmunks off the deck. We should be reading and listening to music on the Boombox while Scott takes pictures as the mist rolls off the hills in this little slice of heaven.

But we’re not. My husband’s health took this away from us.

He fell the other day, so that ended any dream of loading up the Forester and rollicking through the Gatineau Hills toward this place that we have called home for almost 15 years. There is no way we’re taking the chance that he might fall again before he goes back to work.

We are beyond sad. We are resigned.

Will there be another summer at Tobacco Lake, another chance to build a fire, and cocktail with the neighbors? Will Scott ever be able to swim in the lake again, that lake he spent hours exploring in a canoe in the early days?

Will Viggo ever again chase minnows, and drench me while he towels off coming out of the water? That is our hope. We have to hold onto our hope.

Right now, I am sitting in my office which is fully pulled apart because I’m rearranging our life right now. Life on one floor instead of two, life in a diminished state involving video games and Netflix instead of immersing ourselves in nature. For Scott, it’s life now navigated with one hand instead of two, with walking aids and diabetic sandals instead of flip flops, with a sense of doom instead of high spirits.

His problems this summer are with his knees, the ones Dr. A replaced. He’s still getting used to them, and hoping that Big Lou is not the culprit. That’s it with ALS, you just never know where the disease ends and your life begins to get smaller.

ALS a mind-fucker and a dream sucker.

Like Michael Myers in Hallowe’en it is always waiting around the corner.

So I sit here flipping through photographers of cottage days long past, of dogs dispatched over the Rainbow Bridge, friends made and lost, and drinks well drunk.

We may not get there this year but we can still remember the good times.

Sometimes that’s all we can hope for.

I still hold onto the promise of the future and another date with Tobacco Lake.

We will hold onto that promise with every fiber of our lives together. ALS can take away the physical but it can never break our spirit. Or take away our memories of lives well lived, and love always cherished.

I have a message for Big Lou.

ALS, get off my porch!

There is a secret ALS society that has kept the disease hidden behind closed doors for decades. Many of the families afflicted by ALS prefer to remain behind closed doors as they watch loved ones waste away, lose their speech, their breath, their ability to swallow, and their personal dignity.

Actress Sandra Bullock knows this secret society well because she watched her partner Bryan Randall wither and die from the disease over a three year period. She recently revealed that Bryan asked her not to tell anybody that he was dying from ALS, and she kept that promise until he passed away two years ago. Beside his medical team and nursing aides, only her children and her sister were even aware that he was sick.

“I wasn’t allowed to speak about it,” she told Jason Bateman on the popular podcast Smartless. “That was the request — I honored it.”

Sandra says she felt isolated during the process which coincided with the COVID pandemic, revealing he was ill for half their relationship.

Her promise left her grieving alone as she watched the man she loved become a shadow of his former self.

“My person left a lot earlier than the body left,” she said.

Reading this was heartbreaking for me. Scott and Bryan had a lot in common. They were both professional photographers, both big men (6’2, 250 and 230 pounds respectively). Their size makes caregiving challenging, even for a woman like Sandra who is able to afford excellent care. She says it took four aides to help with Bryan’s care, and she found it difficult to get help.

This frightens me as I look toward an uncertain future for us both. Will I be able to care for my husband on my own? Will I have to look for care alternatives for him when the ALS finally takes hold?

I am determined to do whatever I can to keep our family together. I know that I don’t have the luxury of keeping his condition a secret, and that I will need every resource available to me. That means reaching out, asking for assistance from the ALS Society, social workers, and others who are ready, willing and able to be there to support my husband during this terrible time.

It troubles me that Bryan swore Sandra to secrecy because, in the end, silence is deadly and torturous for those caring for ALS patients. Bryan is gone now, and she is left picking up the pieces, finally sharing her terrible secret with the world. I am glad she finally came forward and I wish her well in her healing.

Her words will help others who are suffering in silence with any terminal disease like ALS. And her celebrity will help raise awareness about ALS and the terrible toll it takes on both patients and caregivers.

I wish my former high school had given courses on how to navigate life’s perilous journey. West Park Secondary School had lots of courses on home economics, car maintenance and even refrigeration but it didn’t offer life-skill courses like why money management was important, and the joys of taking jobs that offered pensions. (Maybe the school did but nobody directed me to them.)

Here is how West Park failed me.

Choosing a Career Path: I wasn’t at all prepared for how my life turned out. Because I was considered a talented writer by guidance counselors, I was directed to pursue their dreams for me which involved leaving home and going to journalism school. In retrospect, that was clearly a bad choice for me given that the first full time job I ever got was at a newspaper that folded within months of my arrival.

That was definitely a clue I was in the wrong business.

Victimology: The counsellors should also have offered a course on how to spot a cheating, emotion-sucking male before I gave my heart to him. My first love cheated within seconds of us taking our marital vows and carried out a long-term affair with a woman he would later marry (while proudly announcing on Facebook that they’d been together for 40 years which included several years when I was still married to him).

The Pitfalls of Marriage and Childbirth: My second love was even worse, leaving me with three kids under six for (you guessed it!) another woman. Neither of these men offered me pensions though in the second case, he did offer me a pittance of child support for which he got a tax credit.

The Joys of Single Motherhood: The school also should have included a credit course on being a single mother, including information on how to negotiate work with three traumatized children in tow, and what to do when the bank tells you that you can’t keep your house because child support isn’t considered a viable source of income. Also, how to pay bills with no money in the bank!

Maybe if the school had scared me shitless, my life would have turned out differently. Maybe if I had listened to my mother and become a bank teller, I would be a vice-president of the Bank of Montreal eventually. But I didn’t take her advice, and here we are.

The Perils of Caregiving: Finally, I wish the school had offered a course in senior affairs management for those of us who now find ourselves negotiating caregiving for a spouse. A third of women over 65 are looking after their spouses on a full time basis, driving them to appointments, visiting them in the hospital, wiping their asses while also doing the house and yard work, and managing the car repair bills.

That doesn’t include those souls who are also minding grown-assed kids in their basement while tending to their parents, who may also have made some dubious career and life choices. (Thankfully, my parents are dead and my kids have flown the coop.)

When I left home, I had dreams of being somebody and now I’m a nobody on a fixed pension watching my bank account drain once again on a monthly basis in spite of my last ditched efforts in my 50s to save, save, save.

I was thinking that if I had to do it over again, high school I mean, I would definitely take courses in automobile maintenance and wood working instead of mathematics and Canadian history. Also home economics, I suppose. And French.

Probably wouldn’t have matter. Like most people, I forgot everything I learned in high school, except the prologue to the Canterbury Tales which remains embedded in my memory for ever.

Looking back, I realize that a person can’t change their heart, only their career path. This morning, as I write this, I realize I should have listened to my mother and become a bank teller instead of listening to those damned guidance counsellors.

Mothers always know.

When Scott was in the Ottawa Hospital Rehabilitation Centre, his old friend Paul Morisset stopped by after his regular visit for a hyperbaric oxygen therapy session (HOBT).

Paul had been receiving HBOT since the spring to treat bleeding caused by the radiation used to treat his colorectal cancer. After 20 plus treatments, the bleeding stopped. He’d heard that some ALS patients are being treated with HOBT, and while the research is in the early stages, Paul told Scott that it does show promise.

HBOT involves breathing 100 percent oxygen under increased air pressure to support healing and complement other treatments like surgery and antibiotics.

Paul said he was amazed at the healing power of HBOT, which is now used across the world to treat everything from PTSD to knee and skin issues. In Paul’s case, it was used to help to heal the bleeding that seemed impossible to stop.

According to Paul, HBOT is the unsung hero of the Ottawa Hospital. Patients have difficulty getting treatment, often waiting months for an appointment. Part of the reason is that OHIP only pays for 14 specific indications like carbon monoxide poisoning, decompression sickness, severe non-healing diabetic and radiation wounds, and acute crush injuries. Yet, in other countries, like Israel, more than 200 patients a day use the service for myriad conditions including soldiers and citizens traumatized by war.

The good news, I suppose, is that HBOT is available on your own dime in Ottawa though it can cost between $150 to $400 per session.

Paul wonders why the HBOT isn’t offered to more patients who are eligible, and says the new Ottawa Civic Hospital doesn’t appear to be including the therapy in its new build. He warns that not all doctors are onboard with the treatment. Even his own radiologist thought it was a bad idea. I pointed out that specialists are sometimes best to stay to their own lane especially when dealing with patients who are seriously ill, and have little to lose.

If you think HBOT might benefit you or a loved one, the process is simple with a referral from a physician. More information is available here.

Conditions Treated by HBOT:

Acute & Emergency

• Air or Gas Embolism: Bubbles blocking the bloodstream.

• Carbon Monoxide Poisoning: Smoke or exhaust inhalation, including cyanide poisoning.

• Decompression Sickness: Often known as “the bends” from diving.

• Gas Gangrene: Clostridial myositis and myonecrosis.

• Crush Injuries & Compartment Syndrome: Acute traumatic ischemia.

• Necrotizing Soft Tissue Infections: Severe “flesh-eating” bacterial infections.

• Exceptional Blood Loss: Severe anemia where blood transfusions are impossible. [

Chronic, Delayed & Recovery Indications

• Severe Non-Healing Wounds: Specifically diabetic foot ulcers that fail to heal with standard care.

• Delayed Radiation Injury: Damage to tissues, bone (osteoradionecrosis), or organs following cancer radiation therapy.

• Compromised Skin Grafts & Flaps: Grafting areas failing due to poor blood flow.

• Refractory Osteomyelitis: Chronic bone infections that do not respond to standard antibiotics.

• Intracranial Abscess: Severe infections in the brain.

• Idiopathic Sudden Sensorineural Hearing Loss: Sudden, unexplained hearing loss.

• Thermal Burns: Severe, acute heat or fire burns.

Paul wanted to spread the word so more patients were aware of this important treatment.

Scott and I are truly thrilled to discover the magic of the Big Man Wheel Chair which allows me to get him out the door to the car while he recovers from double knee surgery and tackles the challenges of being a newbie ALS patient.

It works nearly perfectly though the walkway is still a tiny bit narrow for its wingspan. I can get him out in under a minute, and we’re ready to go for any appointment at the Ottawa General Hospital, though the chair is still too heavy for me to lift into the trunk of the Mighty Forester. Still, it’s a lifeline.

A lifeline, that is, until we actually get to the hospital. I have no problem locating a Big Man Wheel Chair at the side entrance of the newly renovated main building which has extra wide doors for easy maneuverability. Piece of cake.

Getting into the hospital is no problem but getting around the hospital is more than a challenge. First, the elevators are small and bustling with staff, patients, and people with disability issues. The freight elevator seems to be busted so we make do.

Next stop, the vampires on the second floor who will be taking Scott’s blood to determine whether he’s eligible for new drugs that may slow down the progress of the ALS. We wait, and wait, and wait.

Two hours later, his name is called and we try to enter the blood clinic. Nope, wheelchair doesn’t fit. The doorway is about half a foot too small for The Big Man Wheel Chair, and no matter how we try we can’t get it across the threshold.

There’s another snag: the doctor forgot to fill out the requisition, so we sit there trying to figure out what to do next. This gives me time to run off and feed another $12 into the parking meter, bringing the cost of the visit to the equivalent of a fancy restaurant meal. Still, I am grateful considering Scott’s whole medical adventure has probably cost the Ontario taxpayer half a million dollars — so far.

So if you are currently paying taxes in this province, thank you on Scott’s behalf.

I return to the second floor where my husband still sits stoically, and on my way, I help another poor woman negotiate the elevator with a Big Man Wheel Chair. She is nearly in tears.

I leave the elevator, and that’s when the magic happens.

On my way to the vampire den, I manage to snag a medium sized chair just sitting there in the hallway. I expertly transfer my beloved to the smaller device and in we go!

Looking around the hospital, it is very evident that most of the doorways are too small for the Big Man Wheel Chair. It makes me wonder what one does if they don’t have an intrepid crack journalist embedded in their lives who can scour the premise for a chair that fits through the damned doorways.

Note to self, the next time I make a donation to the hospital, I will write on my form: needs wider doors.

Thanks to all my new readers, and especially those kind enough to become paid subscribers. Because of you, I’ve managed to pay for The Big Man Wheel Chair this month! Maybe next month, I can get his nails done.

For weeks, I’ve been putting off writing three stories for a magazine. I’ve done the interviews, I just need to transcribe them, and put words into the computer, but I can’t do it.

It’s not because I have writer’s block — I’ve never had writer’s block — and I’m not the type to put things like this off until the last minute. The stories should have been written by now, but they sit there on my digital recorder just waiting to be realized.

It’s the first sign that there is something terribly wrong going on in my life, the first signal that I have turned inward in an effort to keep things together while Scott and I process the fact that he has ALS. Right now, we’re in a holding pattern waiting for an important meeting with his team at the end of the month.

In the meantime, we’ve both been keeping busy. I got Scott a Zelda game on the Switch, and he’s really into it right now. For those of you who have never tried playing these games, I highly recommend them as terrific time wasters and a way to suspend the imagination for several hours a day.

He can’t do much else, can’t even make himself breakfast, can’t even take out the dog, or sit in the backyard and smoke a joint. He’s almost in a trance, only half listening to my ramblings, choosing to focus on crap movies on Netflix, and now the heroic adventures of Link.

This has left me to my own devices, so I have kept myself busy going through the motions of an old lady’s life: shopping for sales at the Independent, traipsing around doing errands and sorting and tossing video tapes, electronics, and photo albums that Scott had stored in a cubby in my office. Occasionally, I bring him an album and he looks at it, then signals for me to put it in the garbage. Once in a while, he will perk up and ask me to put a remembrance aside for his sister.

He seems to have little interest in the past, is trying to stay in the present, and is terrified of the future. There is no upside to ALS, no heroic acts that can be performed on his behalf, only a certainty that his life in whatever form it takes will be short.

I am already grieving for our marriage, already having regrets that we hadn’t met sooner, and already feeling that I am losing the only person who I ever felt was home to me. We used to do everything together, and I now mostly do everything alone, as I struggle to make sense of this new purgatory in which I am living.

The grief burbles up at 2 a.m. then 4 a.m. as I struggle with my thoughts and feelings. Night time is the time my consciousness screams at me to face the reality that I am now living. I try to drown it out with music or meditation but grief and despair are shouting at me and my anger gets caught in my throat.

I sleep alone in the basement, leaving the dog to meander around the house and occasionally jump on the bed with Scott. I meet Viggo at the door at 6 a.m. and take him out in the backyard. The sunrises are pretty, the roads are quiet, and the world is peaceful. Soon, the cars will be roaring down the streets, people will be walking past me or waiting for a bus across from my house.

When it’s busy, I go in. I don’t want to be in the world right now. I don’t want to feel the energy emanating from a city in full flight. I just want everything to go back as it was the day before my 70th birthday, before everything changed.

I know these feelings. I’ve been held in the hands of grief before. It’s not a thing you get past, it’s a thing you have to feel with every fiber until you find a new path. This time is different. I am grieving for a husband and marriage that is still very much here. Not much has changed in a month and half, but everything has changed.

I can’t force myself to go back in time and remember all the wonderful memories we’ve built together. It’s simply too painful.

So I find my solace here, with the darkness still surrounding me, as I get ready to start my day. Today, I will make breakfast and take Scott to the hospital for some blood work, then we’ll come home and go about our separate activities, as small as they now are.

I want to write, I want to be in the world, I want to laugh again. But it’s getting harder by the day. I live in the place that I cannot share with friends or family; it is place where God is supposed to be but I don’t feel any hands reaching out to me from the spiritual world.

It’s just me. The dog. And my wonderful husband sitting in a chair trying to figure out how to live before he dies.

I’ll know when I’m past this hump.

I will write my stories and send them out to the world. I will venture out for playtime, perhaps a meal with friends, perhaps to visit the gym.

But until then I will continue to look for the light.

I know it’s here somewhere.

A friend once told me the story of the end of his marriage. He had been a high-flying senior executive with a world-wide conglomerate. After decades of travel, and wining and dining, he decided to retire and buy an estate out in Ottawa’s west end.

Retirement didn’t come easy to John and he decided to spend most of his time with his new girlfriend, Pinot Grigio. For months, he wandered around the third floor of his house while his wife moved on with her new boyfriend, Yoga.

One day, he came down stairs and found his wife sitting at the table. She looked up from her phone and regarded him with a stone cold smile.

“What are you still doing here?’ she asked.

It was the end of a love affair that had last two decades but it was over. At 66 years-old, John was a bachelor again. He sobered up and struck out in the world to find a new wife, a new life, but nothing worked. No amount of money in the world could have bought him what he once had with Julie. And all the cars and toys in the world couldn’t fill the vacuum.

Fifteen years later, John is still single. He still lives in a McMansion, has private health care, and a gym in an opulent hotel nearby. Julie lives close, they break bread together weekly, and they text daily.

They still love in each other but they don’t love each other. They never got divorced, and probably never will — especially at his advanced age (she is at least 10 years younger and doesn’t seem interested in losing what they worked so hard to create). But she isn’t there for him in ways that other couples are, and it can result in some dire consequences.

About five years ago, John was taking out the garbage and fell. His country estate was pretty far from the neighbors, and despite him shouting, he lay on the sidewalk for nearly a day. When he finally crawled into the house, he looked up and saw his phone on the counter. John couldn’t reach it, and passed out for many hours. Eventually, he made his way to the bedroom where he had a land line and manage to pull it down from the dresser. It was a total of two and a half days before John finally called Julie who called the hospital where he spent months in rehab for a severely broken hip.

A couple of years later, he got a call from Julie whose neighbors found her on the side walk unconscious. She recovered from her injuries and returned to her abode alone with a fall-down monitor.

Just this past winter, John took another header in his McMansion and landed on his shoulder breaking it and severely damaging his rotator cuff. Again, he laid there for two and a half days because his Apple Watch was sitting on the counter.

This whole situation made me wonder why the two of them just didn’t get another McMansion together with three floors and an intercom. Like Andrew and Fergie.

People confuse me on a regular basis. Especially people with money.

I had a great day yesterday purging my house of mounds of wires and vintage video production equipment. I also returned an assistive device I bought to help Scott hold utensils in the hand that no longer works.

Last night, we watched Ted Lasso. I really needed Ted’s sunny side up approach to life and I secretly wished he would send me some biscuits and barbecue. I want him to be my imaginary coach as I get ready to face the myriad meetings we will have in the next week. There is a face-to-face with Scott’s doctor, blood tests to determine whether he has the mutant gene that would qualify him for clinical trials, and a whole half day of meet and greets at the ALS Clinic.

Since he arrived home, we’ve been in a state of suspended animation, the kind of half life people lead when they are between Earth and heaven, a purgatory of sorts where we are slopping around with little official information or knowledge. I recognize this state. I felt it after I was diagnosed with Stage Two colorectal cancer a couple of years ago; it was before my surgery and after being given the bad news by Dr. Boushey that he was going to cut out half my colon.

It can be a good time, and it can be a bad time, depending on the day. As I said, my day was good but the overnight was terrible. And putting on John Denver made it worse.

I listened to him in a completely different way, this wonderful inspirational singer whom I had loved since childhood. I swooned to the loving songs for Annie (whom he divorced), his rocky mountain high (what product did he use?) and his joyful ode to Jacques Cousteau. Man that felt good until it didn’t. I suddenly realized so many of his songs were about packing his bags and leaving his loved one promising he would be back some day, or that they would meet again. His final act was indeed leaving on a plane, though it was not a jet but I’m guessing a prop. John never did come home again.

Suddenly, listening to John Denver went from joyful to ominous, and I felt the night terrors I’ve often experienced in times of crisis. It’s like a form of sleep apnea where I wake up just trying to catch my breath. I had night terrors in spades after my husband left me with the kids. It’s a way of sorting things out, I suppose.

I woke up feeling anxious, so I decided to write this newsletter to rid myself of all the anxiety. Writing helps, folks, it’s why I do it. It is therapy, it helps me made sense of the world. It reminds me there is no point living in the past, or fearing the future.

I am here now.

I need to make the best of the time we have.

Thanks to my wonderful readers, and for all the notes and messages from my dear friends and even friends I’ve yet to meet. And thanks for your support. I’d love it if you would share this newsletter with friends who might be feeling alone giving care to a loved one. It would be great to hear from anyone who would like to share their story.

I’m hoping to start a Friday feature which focuses on the experiences of those who are out there suffering in silence, sad at the prospect of losing that one person who is their home.

Happy Friday!

We finally solved Scott’s mobility issue. If you read my previous Substack, you will recall that he’s recently been weak in the knees and not from watching me in my fetching Walmart outfits and uncombed hair carting him from appointment to appointment as we figure out what the hell is going on with him.

The problem was not caused by the ALS as we both feared but rather from the weakness in his leg muscles caused by having two total knee replacements in three months. Well, duh!

This was the verdict of the kind physiotherapist at the Ottawa Hospital who changed his exercise program. After hearing this great news, Scott came home with a smile on his face for the first time. And he had, you might say, a spring in his steps.

Sorry, I got waylaid because I wanted to give you the good news. The other news is I solved the mobility issue by renting him a wheelchair which I can use to port him from the front step to the car. Now, you may say, well duh!

But you have no idea how complicated it is to rent a wheelchair with the exact specifications set out by the physio in her prescription. You see most available wheelchairs are for scrawny people with no muscle mass and not for a 6 foot 2 inch former high school linebacker who is built like a refrigerator. Scott is also about 275 pounds of dense man meat, so that means we needed a wheelchair from Mr. Big and Tall.

It’s hard finding his size.

Imagine getting a wheelchair for The Hulk, or Jason Mamoa.

It took me three weeks to locate one and that was mostly because the suppliers simply never phoned me back. I won’t throw them under the wheels of my wheelchair but I will give a shout out to The Good Access Company who were able to locate two of them, one a garden variety wheelchair and the other a more super duper one. Fortunately, our insurance is paying the freight, soooo, score!

Here’s the rub. The wheelchair that is suitable for a manly refrigerator weighs 60 pounds. That means, while it is technically a “transport” wheelchair, it is not a wheelchair that is easy for a 70 year old woman with a bad back to toss in the back seat of her Forester.

“Can we help you put it in the car?” the helpful salesperson asked.

I shook my head.

“Not unless you come with the wheelchair!”

I finally managed to get the thing in the back trunk after fiddling with the Weather Guard which was acting more as a guard against getting the thing in. I drove it home and proudly wheeled it past the fence and into the yard.

Prior to our rental, we agreed that the wheelchair would live outside under a tarp, and not in the house. Scott doesn’t need it in the house, especially now that he has realized that he has non-ALS workable legs.

Yesterday, I decided to take him out for his first spin. We were going to the aforementioned physio and he was nervous, still afraid of falling, and he also wanted to make sure he wasn’t late for his appointment at 9 a.m.

I hadn’t yet opened up the chair and had to go downstairs to figure it out. I couldn’t find the lever to open the chair.

“Maybe you can come down and figure this out,” I said.

“Well,” he sniffed. “I better get down there now!”

“Hon,” I said defensively. “It’s only 7:30 and your appointment is at 9. And the hospital is literally 10 minutes from here.”

He slumped back in the chair and I went back downstairs. I looked at all the levers, and suddenly the lightbulb turned on. I pushed the seat and it expanded.

I should have known this, but I was flustered. Anyway, I went upstairs to impart the good news.

He managed to get himself down the stairs, sat in the chair and we realized it was too wide to navigate past the garbage bins. The walkway was also a bit too narrow and its wheels started to eat up the grass on either side.

I expertly threw the bins to the side, which solved the first problem.

Then I had to ask him to stand up so I could dig the wheels out of the turf.

We eventually got him through the gate and to the car. So far so good. But there was another fly in the ointment.

The nice sales person failed to mention one thing I didn’t consider — the fact that I had to push a heavy wheelchair which held Jason Mamoa! That’s a big load.

I reckon wheeling him around is the equivalent of pushing dead weight up a hill. I might as well carry him in my loving arms.

In any case, the wheelchair helped. I got him to the car, I got him to the hospital, I got him back to the house to the front step. I left him there to go back and get my purse. When I returned, he was already up the stairs and into his chair. No bumming required.

I credit the physio for her reassurance that he wasn’t dying, he was just a 275 pound weakling who needed more strength training. The ALS diagnosis had messed with his head — and mine — but it didn’t win this time.

All we needed was a wheelchair built for Aquaman and a little positive thinking.

I want to thank my dear readers for vaulting me up to Number 10 on Substack in the category of Health Politics. Also I made a hundred bucks this week, so thank you to my paid subscribers. I am humbled and grateful.

The sun rose with some potentially positive news in a week that has already had its challenges — and it’s only Tuesday.

Scott received an email from the hospital saying he qualified for genetic testing. About 10 percentage of ALS cases are inherited and mutations can turn up. If a patient has that mutation, they can qualify for an alternative treatment using a gene targeted therapy which can slow down the progression of this awful disease.

If he has an SOD1 mutation, he will also qualify for new trials. So that’s positive. It would also have broader implications for his family members who can receive genetic counselling before and after testing. Scott has lots of family members so this information would be important. (My kids are not his kids so it has no implications for my own family other than it might give Scott more time with his grandkids.)

The bad news is if he doesn’t have SOD1, then nothing changes and his slow/fast walk toward his destiny continues. But hey! Right now, we’re up for any sliver of good news.

_______________________________________________________________________

Yesterday was a shit show, and would be funny if it weren’t so sad. Scott had an eye appointment to check the pressure in his right eye, the one that has a “buckle” that helped repair his retinal tear 10 years ago. The doctor was concerned that he was on the road to glaucoma and ordered drops to slow it down.

Goody, goody, I thought. Not only will he be wheelchair bound but he’ll also be somewhat blind! Oh well, it’s always something. Time to whip out that hash he’s been saving.

Getting him to his appointment proved a worrisome challenge. His newly replaced knees are working but he has to stop several times to sit down, making his walker somewhat redundant. For the past few days I’ve been following him with an ottoman to break his fall and that’s ok. But getting him out the door and to the hospital, well, that’s a whole other challenge.

The neighbors must have been chuckling watching this old man on a walker being followed by an old bag holding a Canada Day lawn chair. He would walk a few steps, then flop down on the chair, get up and do it a few more times til he reached the car. I thought seriously about putting him on the dolly and just pulling him like my grandson.

When we got to the hospital, there was the usual mayhem, with me racing in to find him a wheelchair that wasn’t built for an 80-pound frail granny, then settling him in, and taking the long walk to the entrance of the hospital eye centre. Fortunately, the clinic has a wheelchair “spot” designated for a marked man with big blue signs, but he has to stand for the eye tests, which proved difficult. Anyway, we got it done, and off we went home with Scott salivating for some cold beer and burgers.

Getting back into the house was incredibly difficult. I followed him with the lawn chair just as the skies opened up and drenched us both on this slow walk toward safety. He managed to get into the house and up the stairs (yay!) but couldn’t make the last step.

He sat down, took a breath and tried to get up on the ottoman but couldn’t do it. Then he groused about the fact I had moved the couch (for his accessibility!!) which meant he had to bum his way across the floor to his chair.

Meanwhile, Viggo was at wit’s end, crawling in and out of the walker legs, barking, and generally making a nuisance of himself.

Finally, Scott willed himself to get up on his chair.

By this time, I was a basket case.

Now you may ask, Rose, why don’t you get him a wheelchair?

And that, kind audience, is a good question.

More on that in the next Substack.

By the way, thanks to the two Sheilas and another brave reader for being my first paid Substack subscribers. It means a lot considering Brooke Baldwin only has 12 subscribers, and Jim Acosta has seven.

My newsletter is now number 20 on the health politics scoreboard, so thanks to all of you kind people who are taking the time to read my weird and wacky thoughts. Free or paid, it’s all important, though paid is better, obviously.

All the best, and talk soon…once I can finally find a wheelchair!

I was unloading my groceries this morning when a neighbor stopped by.

“Aren’t you glad the witch is gone?”

We barely knew each other, in fact, I finally asked her name today after 15 years living here, though I knew she was friendly. She was a dog lover.

“Finally!” I nodded turning my head towards the For Sale sign two doors down. The owner’s name was Marion and witch didn’t even come close to describing her. She was elderly, maybe in her 80s, but pretty spry until the Lord reached down and bopped her on the head causing some injury bad enough that she required a cane, then a walker.

Last time I saw Marion she stared me down in the driveway, and barked something at me about parking on the street something she regularly did even though she had a perfectly suitable driveway for her ugly square KIA.

As my mother might say, she was a “parking on the street is good enough for me, but not for thee”, type of person.

I told her to fuck off, maybe even gave her the finger. I can’t say I regret that conversation, as it pretty much summed up how all of our encounters ended. She was mean, she was spiteful, she was racist against my Jamaican neighbors, and hateful against my gay neighbors across the street.

Our feud began at least 10 years ago when she applied adhesive to my then daughter-in-law’s car because she parked in a legal parking spot in front of our house. Our relationship continued to spiral after she menaced me at my fence at 7 a.m. because my son’s garbage fell over accidentally. Then she accused me of dog abuse because I fed Viggo outside to stop fights over food with Sophie.

The final straw came after a derecho hit our tree destroying the fence and nearly flattening my Subaru (luckily the fence saved it). Marion remarked to another neighbor that she wished the tree had fallen on my house and we would have to move.

She must have been projecting.

There was no way to repair the relationship.

She had no charity in her heart, and no love for her community. Instead, she wielded the power of the Smartphone to anonymously bully everyone around her. She was so terrible to my Jamaican neighbors that she constantly called the cops on them, and in fact called a sympathetic black cop the N word. The N word.

In her last act of love, she called the bylaw on my wonderful neighbors across the way after their lawnmower busted.

I guess even the Good Lord had had enough of the old bag, and smote her once again.

Or as David Steinberg once described Lot’s last words when God turned his wife into a pillar of salt, “Dear, God told me to tell you to look back”.

Last I heard she was off to some old age home where she will live out the rest of her horrible existence complaining about the food, threatening to call the authorities on residents, and demanding to return to the home that her son spent weeks emptying.

There was no love lost between the son and the mother, apparently. Or with Marion’s brother who got so mad at her that he tore up her rose garden.

Marion was an equal opportunity offender.

I have the heart of an angel and I love and respect most people, but not her.

As Samantha, the gentle woman across the road told me, “I hope she gets to live in the house she deserves.”

Amen, sister.

The neighbors can finally sigh a sigh of relief knowing she is in a better place. Instead of nosing around in our business.

So long, Marion, it’s time that we began to laugh, and sing, and think about you never again.

(I need to wash her out of my brain, so here’s a little LC, which I will be blasting in the backyard with no worries that bylaw will ever come calling again.)

Everyone has a secret stash of cherished memories, faded photographs, and hard evidence to prove they have achieved something in their lives. That’s why people still have basements with shag carpets and shelving to store their tarnished sports trophies, ribbons, plaques and banners.

Men especially. They love to admire their achievements on the field and harken back to the glory days when they could still do up their belts across their middles instead of under their burgeoning beer guts.

Many people move on to other pursuits. Not journalists. Journalists are a rare breed.

For years, I lugged around yellowed newspaper clippings from my days as a newspaper reporter. There were hundreds of these bird cage liners from when I reported on grape festivals, true crime, and school board meetings.

A few years ago, I proudly broke the cycle and pitched crates of them. Now my stash has been whittled down to one box.

Recently, I set my sights on a new target: my husband Scott who spent 26 years as a cameraman at CBC.

I explained that, given his precarious health situation, we might have to move to a smaller abode, one that has fewer closets and cubbies to store his memorabilia. He agreed, and I set off on an adventure of a lifetime to rid this wonderful hoarder of all the crap tucked into closets and under his tools in the garage.

I started with the cubbie in my office where he stores most of his work and souvenirs from election campaigns, celebrity interviews, and so on. When I opened the door, a lifetime of treasures literally spilled out onto my unsuspecting head.

There must have been a hundred VHS tapes, and even more photographs from his glory days. The tapes contained, for the most part, raw footage from his time shooting disasters, concerts, personal interviews, and stories that made it onto the CBC National. The stash doesn’t even count about 50 tapes he shot when we both worked on two music documents, which I convinced him to donate to the City of Ottawa archives a couple of years ago.

Because he’s disabled, I had to lug each box to his chair, and he basically told me to throw them all out. This has never happened before. I guess he has finally realized that he would never screen them all, and digitize them for posterity. Which was a good decision considering we don’t even own a VCR anymore.

The question then became: what do we do with a hundred video tapes? I checked AI Claude who simply and virtually shrugged and told me that there was no recycling program for videotapes, and I should just put them in the garbage. This advice was distressing to me given that the City of Ottawa now only allows three bags of garbage every two weeks, meaning I will be throwing out video tapes until Christmas.

A wise friend told me that I should simply bag up a few at a time and throw them in the garbage at the mall but I fear being apprehended after sharp-eyed mall security personnel review their closed circuit camera footage of some crazy old woman regularly depositing contraband in their dumpster.

What is she putting in those bags, they would wonder.

Upon pulling out the tapes, they would discover news footage and call the RCMP in case we are spies or criminals trying to get rid of evidence.

Guilty, I would admit, as I barricaded myself behind the door holding Viggo for good measure.

For now I have decided the best move would be to take the video stash to the basement and store it. That seems to defeat the purpose of my project.

The circle continues…

One day I went looking for drinks in the fridge downstairs. I don’t know why we keep a second fridge other than as a place to store desserts and appetizers for a party. Otherwise, it’s hardly used.

I opened the fridge and discovered an entire flat of eggs. When did I buy these, I wondered. Three weeks ago, maybe, or before Scott went into the hospital for his double knee replacement.

Beside the eggs, I found a pair of scissors I’d been looking for. Why are the scissors in the fridge? Oh, I needed the scissors to slice open the plastic wrap to get to the eggs I forgot about.

The other day, I went looking for a hand strap I had bought for Scott to help him hold utensils. It was not the right device, and I was hoping to return it. I thought I had left it in the car. But I was wrong.

Upon a frantic investigation, I discovered my bi-focal computer glasses that had been missing for months. These days, that’s a win for me.

Ever since we began this health journey, I have been plagued by forgetfulness. At times, I thought I was going mad. In my quest to be the perfect caregiver — aka control freak in charge — I lose my keys, my glasses, pieces of clothing, my jewelry, and sometimes my entire mind.

I read this morning that brain fog is the curse of the caregiver.

“Brain fog is a common group of symptoms that affect how people think, remember, and concentrate,” says the Cleveland Clinic. “It suggests that brain fog can make performing ordinary tasks challenging, and while it is usually temporary, it can persist for weeks.”

I stole this quote from ALS caregiver Juliet Taylor who often writes on the subject of losing her husband Jeff after an short stint living with the disease. She became so preoccupied with the responsibilities of caring for him, that she began to forget conversations, mundane tasks, and even birthdays. If pressed, I’m sure she also might have left the scissors in the fridge.

Juliet believes that the brain fog she experienced came from her fear of losing control. She was so preoccupied by making sure Jeff got everything he wanted, and needed, that she tossed everything else to the wayside.

As caregivers for people with a debilitating diseases or conditions, we are given the immense responsibility of keeping another precious life safe. In our own ways, we believe that somehow if we can just manage everything, we can stave off the inevitable march towards the unthinkable.

Caregiving for those with serious illness isn’t like motherhood. We can’t somehow kiss the limp hand and make it better. We can’t change the course set for our loved ones by making sure we do everything perfectly. If we do, we are in danger of losing ourselves in the process.

It’s an old adage, but it’s true.

Put the mask on yourself first.

You can read Juliet Taylor’s excellent essay here.

With all the commotion going back and forth to the hospital, I accidentally left my brand new Cuisinart Griddler on top of the dog cage. When I returned, Viggo the Wonder Mutt had chewed the wire and plug clean off.

I was devastated. This new appliance had become really important to me as a caregiver; I was able to do all the meat grilling that Scott used to do before ALS took his hand away, and arthritis crippled his knees.

I phoned him in a panic.

“Oh,” he laughed. “That’s easily fixed. Just go to the hardware store and buy some wire and a couple of plugs, strip the wires, and attach the new plug. Anybody can do it.”

Anybody isn’t Rose Simpson. I swear I was “to the manor born” in a previous life because I am unable to do anything practical. Re-wiring an appliance was simply out of the question.

When he finally came home, he gave me precise instruction as to what to buy, and sent me to the local Home Hardware. The little fellar there looked at the list and shook his head. It included wire, plus two females and one male plug.

I didn’t realize plugs were gender fluid.

“I’m really confused,” the man said. “I can’t see how this could possibly work.”

“Well,” I shrugged. “He wants what he wants.”

I returned home, gave him the kit, and got busy shoving wire up the female plug’s ass but needed my assistance with the screws that were too tight for him to manage with his weak hand. After I loosened the screws, he got to work.

I took a nap.

When I got up, the Griddler had a complete assembly including an extension cord made from the two males.

"Holy shit,” I cried.

“Go try it.”

I am terrified of electricity, but I plugged the thing in and it worked perfectly.

Tonight, we are having hamburgers.

Meantime, I went out and got a new bottle of water for the water cooler. I loaded it into my Forrester, returned home, and put it onto a dolly to drag it into the house. I managed to swivel the heavy water bottle into its nest, and poured myself a big glass of cold water.

I had never done this before on my own.

We both congratulated each other on a job well done.

Fuck ALS, I thought.

We can do anything if we put our minds to it.

And God Damn It! We’re still a team.

We just have to have a little faith in each other.