Hope Is A Dangerous Thing

Hope is my least favourite feeling.

People are starting to ask me if I’m excited about starting neuro rehab with the PONS device in a couple weeks. I don’t feel like explaining my complicated emotional landscape to them.

I know they mean well, but I’m not going to an all-inclusive resort for a vacation. Some people know that doing an hour of physiotherapy is exhausting. Doing hours of it every day for 14 weeks while adding in commutes to the city in the winter? I feel a lot of things, but excited isn’t one of them.

Someone the other day seemed to feel personally offended that I wasn’t incredibly excited. By then, I was fed up of being chastised by various people that I wasn’t excited enough. (I don’t really get visibly excited about many things anyway) so I snapped that I get to feel however I want about things that personally affect me and my life.

Sometimes I can’t fathom how people who are not affected by my situation and don’t really understand it, feel they’re entitled to an opinion about it, but I digress…

I’m excited for the potential results, for sure. I’m excited at the thought of being able to run again, which will be reassuring if I ever find myself in a burning building. Being able to walk longer than a few minutes without needing a cane would be amazing. I’m not excited about the amount of hard work that’s going to be necessary for four months. I feel the hard work is definitely going to be worth it, but I’m also afraid.

This is my last hope.

That’s terrifying. My brain broke 13 months ago, and I finally got an emergent MRI in March. (I suspect Alberta Health Services and I have different ideas about what emergent means, but I digress.) I think it was April when I learned about a newly approved device for the treatment of physical disability caused by MS. Since then I’ve told myself that my disabilities are temporary provided I can get into the program.

For seven months, I consoled myself on the bad days that being unable to safely get up and down stairs around my own house wasn’t going to last forever. That eventually falling downstairs or just falling down randomly would stop. Just moving around during the course of a normal day wouldn’t always be so exhausting. I used to really like grocery shopping, but now when I go for groceries it’s the only task I can complete that day. I’ve told myself that would all be over once I got into the program. I’ve told myself that if I completed the program with the device, I’d be able to be somewhat productive again and be less of a burden on my husband.

For months, I’ve desperately wanted some semblance of normalcy again. After months of regular physio, I’ve started having the occasional really good day. The following bad days are even more painful by comparison, but it gives me hope that my brain can still communicate with my body properly when the conditions are right.

I just don’t know what those conditions are because my good days are so random.

Hope is a dangerous thing. For me, hope has screwed me over every time and it’s why I can’t be excited about starting the program. Hope is cruel because when it’s gone, I think it’s the most emotionally painful experience in the world.

In less than two weeks, I start a program that has given me hope for months that I might get somewhat back to normal. Ir’s here, and it’s happening. But if I go through this gruelling process that we’ve upended our lives for, the gamble we’re taking that we absolutely can’t afford but we’re taking it anyway and at the end of it all, I don’t reduce my level of disability…

Then there’s no more hope.

This could be my new normal, forever. This new normal might eventually get worse, but it won’t get better. If the hope is gone, if the chance of any meaningful recovery is gone, then I have to accept that I tried all the things. I worked my hardest and hoped the hardest but I’m disabled. The life I built, the life I wanted, is over.

I’m not ready for that.