DIRE WolfF Parkinson White Syndrome

There are a few moments in my life that, looking back, have become key inflection points in my story. Perhaps the most important one was a follow up appointment with a neurologist in Summer of 2013, a year and a half after I had surgery for a serious heart condition. During the operation complications arose that left me with serious muscle and nerve damage, damage that became chronic. In the six months between this appointment and the last I had been diligently doing whatever I could think of to help: going to yoga, acupuncture, and osteopathy and beginning (very tentatively) to jog again. I was excited to sit down and share this with him, to demonstrate that progress was possible and there may be hope for me after all.

I had written down notes, an agenda of things I’d like to talk about in the appointment and a list of questions for him: what did he think about my progress? What have I done right/wrong? What should I focus on for the next six months? About halfway through the material I had prepared he stopped me, telling me that now was not the time to focus on what I’d been doing or progress I’d made, but solely on my “Quality of Life.”

I realized that what he was telling me was to accept where I was, that I was sick and injured and that I would never not be so sick and injured. Essentially, to move on with my life. It was devastating; I’d made what I felt was real progress since my last appointment and I walked out of his office with a sense of grief and defeat instead of satisfaction and determination. I had done the work, why couldn’t he see that?

It was a few months before I really grappled with what he had said and what it meant. That fall we lost my Grandmother, a very hard loss to my large and close-knit family. After the funeral, I remember being back in Halifax, sitting and looking at a calender. It was almost six months to the day till my next birthday … what could I do in that time if I really tried? What if that doctor was wrong? What if I can make it out of this hole?

That day I took ownership of my health and my recovery. I would still go to every specialist I could see, try all the treatments I could find and always do my due medical diligence. But my primary focus would be the treatments I knew demonstrated results. I doubled down on yoga, on osteopathy, on acupuncture. I started taking neuro-regenerative supplements. I started researching low inflammation diets that might help. All through that fall and winter I drove myself as hard as I could manage to make as much progress as I could … and it worked. Eleven months after that appointment I went to the gym for the first time in over three years and did most of my old free weight routine. It was a huge victory for me (even though I spent the rest of the day and most of the next in bed).

Little did I know that this year of effort would be a dress rehearsal for what was coming next. Aside from the physical issues I had, my cognitive endurance issues lingered. I could not sit and concentrate on anything mentally taxing for over an hour without severely diminishing my ability to reason and speak; if I continued to push I developed sharp and piercing abdominal pain. A new doctor recommended a type of nerve block procedure and I agreed to an aggressive course of treatments.

It was a disaster. I was left in worse condition than after the initial injury during surgery: brutal chronic pain, extreme physical disability and the cognitive issues were actually worse. The doctor who performed the nerve blocks had no idea how to help, the doctor who referred me to this doctor had no idea how to help, so again it was up to me.

That was June of 2016. Since then has been two long, hard years of treatments, physiotherapy, neurotherapy, specialist visits, referrals and a few dead ends. Several of the medical professionals I’ve worked with have been godsends, and several of the doctors have been very helpful for a fresh perspective on what I’m doing. But most of what has been effective for me is outside the public medical system; osteopathy, dry needling and therapeutic yoga are all non-traditional options that have been the only things that have worked for me so far. These treatments are ones that I have found on my own, doing research on chronic nerve injuries, frequenting forums and subreddits for outside perspectives and success stories.

The advice and community I found online was particularly helpful. During the first six months of this round of recovery reading stories of success, progress and victories from people who were going through things like I was, was invaluable. Now I try and return the favour, giving advice and support to those who, if me two years ago was any indication, desperately need it. I am writing this today for one of those people, who I hope can find it.

As far as advice for those in similar situations, first let me say I know what you’re going through. I know the emotions of chronic illness, injury and pain: the loneliness, the isolation and the keen sense of loss. I liken it to having fallen down into the bottom of a dry well; you’re lying on the bottom in pain, bloody and a little broken, and above you you can see the small pinhole of light that signals the way out. It seems just at the end of your fingertips, so close yet so far away.

Here’s the advice I’d offer:

Find Something Small To Do Today That Helps. Whatever it is, going for a brief walk, doing a bit of therapeutic yoga or beginning to pace out your day-to-day activities so you can accomplish more. Then tomorrow, do what you did again but maybe just a little bit more. And then the next day a tiny bit more. And so on and so forth, building positive momentum with every step. I think you’ll be shocked what you can accomplish.

Become a Student of Your Condition. Learn what helps and what hampers your activity and recovery. Read and search whatever you can, talk to other people with similar experiences and ask them questions. Have an open mind and try any thing and any treatments that show promise; you’ll likely run into your fair share of quacks but some might work.

Rely On Your Team. I am only where I am today because I have found a fantastic group of practitioners to help. If you can, find treatment methods that may help and then try out a few well-regarded people in that speciality. I am always asking for recommendations from everybody I talk to: who they would recommend and why, what other treatments they could think of that would be relevant, anything. I’ve gone down a few rabbit holes but I don’t regret any of them.

Become Your Best Advocate. Being chronically injured/ill, I have found that I have to be my own salesperson inside the medical system. I have to constantly demonstrate the legitimacy and seriousness of my condition, and communicate the very proactive role I take in my own health. I ask questions, do what research I can and show I’m here to take part in my recovery. I will also push back and debate when I feel I am not being heard, firmly but politely. The people treating you are just people doing a job; I always give them the professional respect they deserve but I always expect professionalism in return.

Just. Keep. Going. It’s hard. At times brutally hard. The resiliency required by the day-to-day life of a chronically injured/ill person is tremendous. I feel it all the time. That’s why I map out three months of treatments and appointments in advance. I never have to think about it, I never have time to dwell, I just get up and do whatever it is I have to do that day. Going on autopilot makes it a lot easier.

I live a life of transition; my body and my injury aren’t static and I wake up after every treatment (I hope) a little bit stronger, a little bit more able and a little farther along than the day or the week or the month before. Perhaps one day I’ll walk into a doctor’s office and they will be able to name exactly what’s wrong with me and know how to fix it. I honestly hope that happens some day, but until then I will do the best job I can with what I have.

Will