• I went back to the clinic in Aurora, CO where I stayed for three weeks of intensive rehab.

• Spent six more weeks at home going to physical therapy twice a week and spending about an hour a day stretching my left hip out

• Returned to Colorado to repeat the rehab course, which I am three days into.

The rehab program is not really designed to be repeated, so let me explain. In a nutshell, during the six weeks after the surgery while I was mostly resting, my hip flexion contracture (hfc) came back with a vengeance. So, when I showed up at the orthopedics clinic to start the rehab program, my residual limb was flexed to far forward to be able to use the full prosthetic leg. While above-knee amputees usually have some amount of hfc, mine was too much (about 35-40 degrees) to be able to compensate for it with an offset in the connector. This was a pretty tough disappointment because it meant that I would have to just keep working on getting my hip un-flexed, and it was a big question mark whether that would happen in time to be able to use my leg at all before the rehab time was up.

I did make significant progress on that front; my hfc improved greatly and I was able to start weight bearing with a short knee-length rigid prosthesis (”shorty”). But things didn’t improve fast enough and I had to simply go home to continue working on it in PT.

As you can imagine, this was incredibly frustrating and difficult to accept. I felt like I had already managed my expectations about rehab and had resigned myself to accept that I might only be able to take a few steps by the end. But not taking any steps, or even being able to stand up with my leg was an outcome well outside of my range of possibility.

But the ortho clinic team came up with a new plan. I would go home and work for six weeks on getting my hfc down to 20 degrees or less. Then I would come back and start the process all over again. At that point I’m thinking: on the plus side, there is a plan; on the minus side, my patience is going to be pushed to the limit.

For the next six weeks, I lived on my mat. Some days I was down on the floor for almost two hours in total. Once a week or so, we would measure the angle of my hip flexion in PT. It was a painfully slow matter of little increments and degrees, 32 degrees one week, 29 the next, etc. By around the fifth week, I started feeling like I was probably in range, but it was still hard to never quite know for sure if I had cleared the threshold for being able to restart rehab. I played out the scenario of showing up to the clinic and on the first day being told “you’re close but you’re not quite there.”

Exhibit A. Stretching it out.

The good news is that all my work paid off this week when the surgeon and prosthetist saw me. I laid down, stretched out my leg, and in that scary moment of truth I got the reactions I was hoping for for weeks. Actually the surgeon was more excited about my progress than I could have anticipated. He took pictures of me and went and showed the rest of the team, so word got around the office fast that I was ready to go. Sweet, sweet validation.

Then just like that, the prosthetist set me up with my full prosthesis and I started rehab again, this time from the starting line. The last three days have been painful and challenging, but I am finally feeling optimistic and excited to be entering this phase after so many setbacks. If things go well this week, I will take my first steps. Big stuff.

I’ll have a lot more to say about how things go over the next few weeks.

Exhibit B. Day 1 action shot. Yep, this is what I look like now.

The last few weeks I have been in the recovery phase and I’m grateful for everyone who checked in on me. I’m feeling pretty good and so far things seem to be healing pretty much according to plan. Medically speaking, there are really two main things happening: one is the evolution of the wound/aperture in my skin where the implant protrudes; the other is the growth of the bone around it inside my residual limb. This makes more sense when you see the post-op x-ray:

Pretty wild. My instructions were mainly to keep it from getting infected by following their wound dressing protocol, and to not push or pull on it (and definitely don’t fall down). Check and check. I’m now at the end of this phase and getting ready to return to the clinic for the three-week intensive rehab phase, where the real work will begin.

Okay, now a little reflection on this weird interlude of the last few weeks. Being forced to slow down so dramatically for such a long period of time produced a strange mix of relief and impatience. Relief about having a lot of time to rest, and impatience about that same thing. There were a lot of days when it was hard to just accept that my job is to wait for my body to heal and that I did not need to be Doing Something. It reminded me a little of the first couple days of a vacation when your brain is still in a residual hyped up work/business mode.

It often felt like being in a state of limbo, especially when there isn’t a whole lot that is visibly changing. In my impatient moods, I wished that I could track my bone structure absorbing the metal rod with daily snapshots or something, to verify that some sort of measurable progress is actually happening inside there. But no such satisfaction is available, at least not yet.

A few days ago I came across this definition of the word “liminal”:

the space between what was and what’s next - a threshold of change, stillness, and becoming, where endings and beginnings blur, and something quiet waits to unfold.

Liminal is a word that I previously associated more with the interstitial moments and features of the natural world - things like dawn and dusk, or transition zones between water and land like a beach, estuary, or mangrove forest. As I was sort of workshopping this idea with my counselor this week, she thought of ocean waves, the liminal state being that brief moment in between when it comes in and goes back out again, when the water isn’t pulling you towards the shore or away from it.

I think this nicely captures the general sense of the last few weeks of being in between two major milestones (surgery and rehab). This is not the first time I’ve felt this sort of way; I remember writing about a similar moment back in the fall, before going to Denver for the evaluation. But this time it seems different, maybe more...amplified? Maybe it’s because the bookends of this phase are so weighty. What is (hopefully) ending is the status quo of the entire last 2+ years of limitations on my mobility and quality of life. It’s kind of the culmination of so much work and patience and struggle. In that sense, it’s really exciting.

I think the risk, though, is putting too much pressure on this next episode before it has even started. I think a lot about aspirations and uncertainty related to future outcomes. The big question mark that I try to avoid thinking too much about is how much functionality and mobility I will be able to regain, and how much pain this will entail. There are definitely levels to it. Just being able to stand up and walk a short distance without pain or an assistive device would be a massive improvement compared to my current baseline. But theres all sorts of other stuff that is aspirational and totally uncertain in terms of my eventual capabilities. What about stairs? Walking for long periods of time in places like museums, parks, music festivals, and stadiums? Disc golf? Yoga? Riding a bike? Long distance travel? I can go on and on, with every activity I can think of generating its own specific questions. I think it’s good to have goals, but it’s also hard to resist the weight of expectations they can bring, since each expectation holds the potential for disappointment of a goal not reached.

Ultimately, in this moment I’m anxious to get on with this new beginning so that I can start the process of actually finding out what I can regain rather than just wondering about it. For now, I will try to appreciate these last couple days of stillness. Hopefully I can reduce the weight of expectation and maximize my curiosity and openness instead.

In the moment, I sort of felt like a deer in the headlights, unable to process the information I was receiving, so even though it was the best news I could have gotten, my initial reaction was not one of joy. Surprisingly, I just felt kind of overwhelmed and flat. But some biscuits and gravy gave me some processing power and over the next 24 hours I sort of came around to what I had expected to feel right after the appointment. So yes, obviously thank god it wasn’t a no. But the “yes” opened up a whole new stream of questions. More about that in a minute.

After the ortho visit, there was some down time to hang out at the hotel with all the Mary Kay convention ladies, which made the whole visit feel even more surreal. Next up was a nerve specialist who normally works with hand issues but also performs a procedure – a “co-surgery” with the orthopedic surgeon while they have you opened up for the OI procedure. The basic concept is that some tiny muscle grafts/transplants are done in the area of the residual limb and severed nerves are placed in them so that the nerve endings have a place to go after the surgery. This is done to prevent them from getting mixed up and creating undifferentiated tangles of nerves called neuromas that can cause phantom limb pain.

The next day we got to meet a local coworker for brunch and then explored an art museum that was running an incredible exhibit of Annie Liebovitz photography. I count the experience as a form of rest, and a welcome diversion from the heaviness of the medical stuff. By the time of a bbq dinner feast with some more local friends, I was really warming up to Charlotte. It’s really a shame the Hornets are such a perpetual disaster (although it must be said that the Suns are in a real “hold my beer” moment of gross franchise mismanagement of historic proportions, but I digress).

The second and final round of appointments were at the rehab facility where the ortho clinic’s OI patients typically go after the second surgery (if their insurance allows it). There I toured the inpatient part of the facility and saw a rehab physiatrist and a physical therapist. The physiatrist was really excellent. To my relief, the doc’s diagnosis was that I am an excellent candidate for the OI implant, reaffirming the surgeon’s opinion from two days prior. OK, so a second ago I alluded to that stream of follow-up questions. Well, by the time we saw the physiatrist I felt more ready with a short list of top concerns and questions. Fortunately the physiatrist practically read our minds and brought up the number one question before I did, which was “Charlotte’s a very long way from Arizona; is this the best place for this?” And that is the million dollar question that I’m still grappling with.

What I found out from this visit is that not only does the course of care require two different surgeries and a week-ish inpatient rehab stay (both with major infection risks afterwards), but there are also a number of in-person follow-up visits during the following year or more. As a result, the prospect of schlepping all the way to the east coast on planes and through airport bathrooms and other germ factories of long distance travel seemed a lot less appealing. The doc’s recommendation was to explore other clinics that are experienced with the implant but closer. The short list is Houston, Denver, and San Francisco.

To wrap up this update, the long and short of all this is that I’m not going to be scheduling surgery right away. Instead, I go back into due diligence mode to explore these other clinics to determine which one is the best fit. But I am doing it with the relief that the question is no longer whether to have the surgery, but where and when. The psychological boost from that diagnosis is huge, and I expect it will give me an extra measure of patience as I work out the next course of action with my doctors here.

OK, the bonus content. I’ve embarked on a chronological exploration of the stylistic shifts in modern jazz which involves both reading about it as well as listening. I’ve been learning about the shift from bop to cool jazz that happened during the 50’s. To be honest, try as I might I just can’t become a bop guy. Cool jazz is more to my taste but still a bit too busy. Anyway, I’m always on the hunt for peaceful, calming music that isn’t boring and “Moon Dreams” from Miles Davis’ Birth of the Cool (1957) fits the bill.

Remember last time when I was talking about going to Chicago and all that? Not now. Or at least that’s how it seems. But there’s a different plan instead. I have since been connected with an osseointegration surgery and rehab clinic located in Charlotte, NC. About a month ago I had a virtual consultation with the main orthopedic surgeon there who specializes in this type of procedure (bone-anchored prosthetics). This was a very anxiety-inducing appointment because of not wanting to hear “sorry, based on our review we don’t think you are a candidate for this procedure.” Fortunately, that’s not what the surgeon said. Instead, the message was something like: “we don’t see any obvious barriers and we’d like for you to come to the clinic for a full evaluation.” So, not quite a “yes, absolutely 100% guaranteed”, but at the very least there’s no reason not to take the next step. Big relief.

That was exactly a month ago. Just this past week, they scheduled me for one on ones to establish care with the clinic’s team of specialists in late July. More details to come, but what I’m expecting is a more comprehensive evaluation involving a new round of imagery of my femur plus physical exams with two different surgeons, a physical therapist, and a rehab doctor (perhaps a physiatrist). Based on the evaluations, I think they will make a definitive determination about my candidacy for the surgery; if I am a candidate, they will discuss the osseointegration process: what to expect, the risks, what the plan for surgery might look like, etc.

I’ve been asked a couple times by counselors and friends how I feel about the prospect of doing this. I will probably save more extended thoughts for a subsequent post, but at the moment I can at least say that, as usual, it’s a real mixture. To start, the prospect of having to travel somewhere far away for medical care is not something I’ve ever had to do before and I already have some anxiety and trepidation about just the travel and logistics of the whole thing. Besides that, there is part of me that is relieved to feel like there is something else to do to potentially break out of this frustrating holding pattern I’ve been in for months with the prosthetics. And of course there is the hope that this could be the thing that changes my life forever by giving me the ability to walk again, which kind of dwarfs all other considerations. Still, I don’t consider this a certainty by any means. There is still more medical discovery with the evaluations which could turn up something unforeseen that could sink my candidacy for the procedure. And even under the best of circumstances, this would be a major disruption to life in general. It would involve two different surgeries spaced a couple of months apart, both in Charlotte, followed by a rehab process that takes months; all in all, I’d be looking at nearly a year of disruption. And then that’s not even factoring in the very real risks post-rehab that never go away, primarily of infection which can potentially be severe enough that the implant would have to be taken out and likely foreclose the ability to walk forever.

I’m only scratching the surface here. But the thing I keep coming back to, is that in the grand scheme of things a year feels a lot smaller to me now compared to how I viewed things during most of last year. It’s a small wonder what experience combined with learning how to reframe your perspective can do for you. To call back to my last post, that’s not an example of recovery, that’s progress. Maybe I will expand on that in a future post. For now, I feel grateful for my army of therapists, care providers, loyal friends, and family who continue to help me navigate this.

Thanks for reading.

The bridge section of “Althea”, written by Robert Hunter and Jerry Garcia, contains the line:

There are things you can replace and others you cannot

The simple line is about a relationship (a richly layered one), but I want to pluck it completely out of context as a starting point. First, let’s swap out the word “replace” with “recover”. Slightly different and perhaps less poetic, but closer to my initial thought. The obvious next question is “which things can you recover, and which things can you not?”

I’ve been thinking about this lately in relation to my polytrauma, in the sense of the word as something like finding something you lost. “I recovered my lost library book under the back seat of the car” for example. Taking a little personal inventory, clearly limb loss goes in the unrecovered column since under the absolute best imaginable scenario, I will never have the ability to move around the same way I did before. My brain injury? Unclear. I actually don’t know if my TBI has potential to “recover” enough that you could say it is back to normal. Same goes for PTSD and depression. Certainly there’s also a list of things that I have regained. My lacerated liver healed. I regained my ability to speak, eat, breathe, and stand up and sit down on my own. I can make coffee and feed the dogs again. I can type things on the internet.

But on further reflection, this weighing of things recovered and unrecovered turned out to be a dead end, an unsatisfying thought exercise. Is there a better way to think about recovery? Out of curiosity, I looked up the plain dictionary definition of recovery: “the process of combating a disorder or a real or perceived problem.” What I notice about this definition is that it doesn’t explicitly include “getting something back”, only being involved in fighting something. No particular outcome is implied. I think this is an important distinction. I feel like this is getting closer to something more relatable and useful. Why?

Well, oftentimes when people talk about recovery they don’t really mean it like the dictionary says. When they say “I hope you make a full recovery,” they aren’t saying “I hope you combat this problem”, it’s more like a wish for someone to gain back what they’ve temporarily lost, or to return to whatever state they were in before the thing happened. Wishing someone who has the flu a full recovery means simply no longer having the flu and going back to normal.

It’s a sentiment which, at the level of common parlance, is a useful term for signaling something like “getting better.” That’s part of why I put “recovery” in the name of my Substack; I want to write about the experience of getting better and it’s a term I think people generally understand that way. Good as far as it goes.

But when you get below the surface, that sense of the word quickly falls apart in relation to more serious things. With limb loss, it can only mean having your limb back, a literal impossibility. With certain TBIs, certain areas of the brain are effectively shut down forever. In such cases there is no path back to some pre-injury state like there is when you get the flu. Those doors are closed and locked from the other side. What meaning can “recovery” possibly have when that is the reality of the situation?

A couple of things. One is the dictionary definition I just mentioned. Recovery as the act of combating a challenge even when knowing the outcome is an impossibility is clearly a better way for me to understand my experience.

The other I take from a recent substack piece by that resonated with me strongly. In it, she questions and rethinks the applicability of the concept of “recovery” in the context of a partner’s brain injury and finds that “progress” is a more appropriate concept. This is because, again, it avoids the trap of assuming that you can get back to normal. But even though you cannot regain exactly what you’ve lost, there is still the possibility of improvement, and that is the central thing. It’s the reason to show up. It also relieves you of the potential hit to your self-worth and self-esteem that could result when you inevitably fail to achieve the impossible “full recovery.”

So today’s lesson for myself, brought to you by Merriam-Webster, is that rather than merely weighing things lost and found or returning to a pre-trauma state, recovery is for me more about simply continuing in the process of combating my challenges. Wish me a full progress.

Quick recap for new readers (it’s a little ick so skip to the next paragraph if you’re worried): the car that hit me destroyed my left leg. Not only did the ER surgeon have to remove nearly all of it, but even salvaging the tiny bit of my left femur required skin grafts from my right leg. Grafted skin is inherently fragile and way more prone to abrasions and cuts than normal skin, plus it takes way longer to heal. Then, during the weeks following the initial surgery, my residual limb developed something called heterotopic ossification. Basically it’s a thing that can happen when a part of your body is massively traumatized and your body gets confused about what kinds of cells it should be making in response. With H.O., it decides for whatever reason that making random new boney bits are the best thing to do. It’s honestly very stupid since it’s the exact opposite of helpful. Last but not least, because of the grafting and just general surgical mayhem, I have all sorts of weird nerve pain that we are just now beginning to unravel.

So to sum up, I have a really special confluence of complications: (a) a very short limb (b) skin like tissue paper (c) random bony prominences (d) nerve pain.

Any one of those factors would make it very challenging for someone to tolerate a normal prosthetic leg. With all four combined, I am about as challenging a case as a prosthetist is likely to encounter. Nevertheless, we keep trying. But it’s a painfully slow process of trial and error and even now I am barely past the starting line. Where there were occasional moments of optimism last year, at this point it’s mostly pessimism. Which is to say that while there have been some tiny increments of progress in terms of simply fabricating a prosthesis that I can tolerate bearing weight on, it is almost impossible to envision an eventual outcome that is in the ballpark of “walking around.”

With that bit of context, what happened at the doctor this past Thursday will make more sense. All last year I’d been wondering “what happens if this fails?” The possibility that there is no prosthetist alive that can make a workable solution for me is a hard thing that I had to start entertaining. Well, the answer to that “what if” is you expand the horizon to include surgical options.

There are a few different things that could potentially happen. One is to make your limb longer. How is that possible, you may ask? There’s a surgery called osseointegration (O.I.) that involves surgically implanting a titanium rod directly into the end of your bone. Then instead of having to put your limb inside a socket, you effectively just hook directly to the metal fitting of the prosthetic leg itself. Yes, this means you have a metal rod sticking out of your skin until you die. However, this is really the most ideal future scenario because, if successful, it allows the maximum possible mobility. However again, there are a number of potential contraindications and reasons why a person might not be a viable candidate for the surgery. Diabetes is one of them, and being a type 1 diabetes-haver, that’s already one cause for concern.

Another option is to do the reverse and electively remove the rest of the femur. Then your prosthetic situation involves an artificial hip joint and mobility-wise you encounter a whole other set of challenges. And obviously once you do that, there are no take-backs or do-overs. But OI and hip disarticulation are kind of the two ends of the spectrum, with some in-between things related to surgically removing the ossification spots and I don’t know what all else. It must be said that there is also the option to not explore any of those things and simply stay with the wheelchair+crutches combo.

OK, so what’s in the Windy City for me? Well for the last few months, my rehab physiatrist (i.e. the doc running the whole show) and I had been circling around the idea of getting a comprehensive evaluation to determine what surgical options might be viable. Comprehensive would mean a team comprised of, say, at minimum a physical therapist, an occupational therapist, a prosthetist, and an orthopedic surgeon trained to do OI. While I’ve heard that there are around 50 surgeons in the country who are trained to do these kinds of specialized surgeries, there are only only a tiny handful of places in the country where you can get a coordinated team to look at you as opposed to say, a surgeon alone.

As it happens, the Shirley Ryan clinic in Chicago is one of those places. And what happened on Thursday is that we made the joint decision that I should go there, after the idea had been on the backburner, or off in the distance for a long time. It was a moment of affirming a mutual readiness to take that next step. This doesn’t mean I’m calling it off with my current prosthetist, nor does it mean I’m going to go have some major surgery soon. It just means more information, without which I won’t be able to decide on a course of action in the coming months.

I feel a bit relieved that the ball is rolling on something. On the other hand I still have plenty of fear and apprehension about what might come of it. What do I hope? That they will say I’m a great candidate for OI and that it’s very likely that I’ll walk again. But what if they say I’m not? That would be a brutal blow but I have to mentally keep on the table as a very real possibility. So, for now, better not get ahead of myself.

The bonus content this time is social media. Similar to me, Gini T. is an above-knee amputee with a very short residual limb. She’s a successful recipient of an OPRA implant and does an amazing job of educating through her Instagram account. If you’re curious to learn more about the niche of bone-anchored prosthetics, she should be your first stop. Her handle is @slimgini.

Thanks or reading.

Zach

Why keep writing these updates?

• The thing about polytrauma is there are multiple different but intertwined paths of healing and progress happening in parallel — brain, body, and psyche — each on their own different timetable. While I feel that I’m further along the path on some fronts compared to others, I am by no means near the end on any of them. In fact there is not even such a thing as an endpoint, only change. And change isn’t linear either. Which is just to say that there is a lot more to come and it’s impossible to predict, thus a lot more to write about.

• To keep friends and family apprised of how things are going.

• Writing these is pretty close to journaling, which is good for the psyche. I wouldn’t say it’s enjoyable, but I do get a therapeutic benefit from collecting and expressing my thoughts and feelings in writing, especially for a sympathetic audience. Is it enjoyable?

• I hope that in working through my ongoing struggles, others may find something relatable, helpful, or otherwise edifying, and in that way I might return a very tiny amount of the kindness and generosity that others have shown me over the last year back into the universe.

Alright, that’s probably enough table setting for the moment. Last, I’d like to experiment with adding something that is interesting or meaningful as a bonus at the ends of posts. Starting off with a song that I’ve gone to many times in moments of despair after the accident. Stevens/Yusuf wrote it while recovering from nearly dying from tuberculosis and a collapsed lung. So when he wrote I can see death's disguise hanging on me he knew what he was talking about, and I connect with that deeply.

Ok, til next time.