I have not been in touch for a while now. I am busy with setting up my new apartment, my new life. And I would have liked to train myself to the old level – which is unfortunately difficult. According to my study doctor, I haven’t changed much, but I do notice changes. Especially balance and speech. Now I have bought a new rollator, the usual ones are too light and unstable. So I can get out of here without any problems. The thing is called Veloped Sport, fields, cobblestones and cross-country are no problem. After a few weeks I can say more about it.
The last few days have also made me realize that I am “really seriously” ill. Quite often my head says “no problem” and then my body puts a stop to my plans. Again and again I make the experience that the physical is one thing, but to cope with the whole thing psychologically is a really heavy task. It’s not just realizing the illness, but accepting that it won’t go away and this uncertainty of what the future will bring is bad.
If I hadn’t already been paralyzed when I was diagnosed in December 2018, there’s no doubt it would have blown me away. Instead, the fact left me breathless – suffocating under the weight of uncertainty about my future. Would I forget to walk, forget to talk, spend my last days unable to move in diapers? Would I be chained to a catheter forever? Would I be in pain? Moreover, the question of “what if” distressed me and made it impossible for me to see a way forward.
It was painful, both emotionally and physically. Emotionally, I struggled with (and still do) not being able to do all the things I used to do with such ease. What I enjoyed, what fulfilled me. Physically, I felt broken and sick trying to live the life I had before. It wasn’t working: my body was betraying me, not playing the game.
How could I reconcile my determination to live a happy life, to be “successful,” with the limitations of now that had now been imposed on me? I disgusted the new “me,” I felt ugly and embarrassed. I still do sometimes, there’s no getting around it.
It took me a long time to realize it. I can’t do everything I did before anymore, at least not without it making me sick and sad that I’ll never reach the bar I set for myself. But that put me in an even bigger dilemma: I didn’t want to give up. I mean, I was told to “fight it,” both by myself and by others.
My stubbornness and determination to live the way I used to was a battle against my disease. And it was one I was losing every day. By looking behind me, fixed on the path I had walked before.
And yet I kept fighting, even though I knew it was not only pointless, but harmful. It was harming my body, my mind. Nevertheless, I continued. I did it because I felt that accepting my situation would be “giving up”. That by adapting my life to my illness, I was giving it victory. It was this constant, wasted struggle that made me lose over and over again.
So now I am changing my mindset: Instead of fighting for my old life, I started fighting for my “best life.” And I can only do that by accepting how things are around me, by grabbing the resources that are available to me at this moment, by accepting that things had changed. By accepting that I had changed.
It wasn’t until I stopped fighting to squeeze myself into a pair of jeans that no longer fit – it wasn’t until I accepted that I had to live my “best life” differently in order to live it at all – that a way forward began to appear. Acceptance is not giving up. Acceptance is adapting my life to make the most of it, to give myself the freedom to be the person I so desperately want to be.
Still, my old life is something precious to me that I lost. Nothing will ever change that. But I have these conditions now, and anything other than making the best of them would not be me.