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The Unexpected Ways I've Found Relief Despite Being Undiagnosed

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There are things we are supposed to feel relief from and other things that are supposed to make us upset. Back in February of 2017, relief for me came from three very unexpected experiences.

I had been struggling to walk for months from symptoms that had suddenly become much, much worse. The clawing worry that there was more to my disability than merely clubfoot had been with me for years, but all of a sudden I could no longer push it back and out of the way – it had taken over.

My family doctor assumed I had developed multiple sclerosis. An early MRI showed a few lesions and they made a referral to the MS clinic at our nearest teaching hospital, but I was told wait times for the clinic were upwards of 18 months, and my condition was going downhill fast.

So one morning, scared by the symptoms I was experiencing and by how little I could function on my own, I called the clinic and asked if there was any way to speed up the process. They asked me why and I detailed my symptoms: extremely shaky legs, very low energy, vision issues, almost-constant nausea, foggy thinking, numbness and tingling in my arms and legs, etc. I told her it was to the point where I couldn’t get to the bathroom unassisted for fear that I would fall. Her response was to send me directly to the emergency room.

This was the first moment of relief. Finally someone was hearing me. Finally someone would take this seriously. Finally I could stop pretending I was OK and let someone know just how bad I was feeling.

From there, I was admitted to expedite a number of tests, but when the tests were over they still didn’t have any clear answers for me. However, when the occupational therapist came to do a discharge assessment she realized there was a reason I hadn’t been allowed to go to the bathroom independently all week and made the decision to send me to a rehab hospital first.

This was the second moment of relief. I knew exactly what going home the way I felt was going to be like, because there hadn’t been any change in my condition in the previous week. We didn’t have any diagnosis, so we didn’t have any treatment plan. My best chance of getting better was to have daily therapy with rehab experts to see if we could retrain my body and my brain to work together again.

But perhaps the biggest moment of relief came the next day when I got to the rehab hospital. The physiotherapist and occupational therapist came in to do my intake assessment, and they brought a walker and a wheelchair. Up to this point, I had only ever been offered a walker for assistance, and “walking” was a pretty big stretch to describe what I could do with one of those. Concerned about my lack of independence, they then asked if I’d like to try the wheelchair. I sat down in the chair, wheeled off at a normal speed, and experienced a rush of relief. I was able to move independently and with ease for the first time in almost four months.

Most people don’t feel relief when they get told to go to the emergency department. The thought of being sent to a rehab hospital two hours from home for five weeks doesn’t make most people feel relieved. And I’ve watched how hard most patients fight to avoid wheelchairs or to get out of their wheelchairs, seen how people tend to feel sorry for those in wheelchairs, and seen how sad and upset my friends and family were at the prospect of me being in a wheelchair. So I know it’s taboo to say it, but for me, the biggest emotion I feel when I look at my chair – to this day – is enormous relief.

You see, almost two years later I still don’t have a diagnosis. Almost two years later a lot of tests have been done and a lot of conditions have been ruled out. But the moment I sat down in my wheelchair for the first time, my life went from impossible to possible. And I can’t tell you how big of a relief that was!

Originally published: December 24, 2018
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