Shymo’s blog: the worst

Shymo

06-08-19

The last couple of weeks a lot of people asked me what the worst thing is that I am going through or have gone through. For now, the worst I can think of was the recent hospitalization.

What matters to me is that during the process of losing strength, functionality and feeling in my legs, I at least got time. It is incredibly tough to go from being able to walk to becoming bound to a wheelchair, but I did get more than a year to go through the process. You get to a point where you accept it. Also the doctors call it an “incomplete paraplegia”, which could mean that someday I might be able to walk again. So what can I do about it? Keep doing my exercises and just keep going; that is what you can do. Or at least, what I will do. After some time you discover that your progress halts. From that moment on you reach a point that you can only work on your endurance. Fine; let’s do that. Let’s work on my endurance three times a week, I also enjoy it! You do have to imagine that this is a process that happened over a longer period of time.

On Monday I was still working out as usual, Wednesday I had to skip because of the pain in my stomach and back. Then, suddenly on Thursday I was in so much pain. I never screamed from pain, but that day something went horribly wrong. Back- and stomach pain, where was it coming from? What was going on? There was no other option but to get to hospital as soon as possible. I went to the hospital with my dad and Siem and when we arrived I got hospitalized and checked by the nurses almost immediately. But why is Mo having so much pain? That is what everybody was trying to figure out. At a certain point I got told it could be appendicitis or stomach ulcer, so first I thought “yes they take out my appendix and I’m good to go”, but that wasn’t the case. Many questions remained unanswered. After a lot of morphine and esketamine they were finally able to get the pain under control. Still we didn’t expect that I had to stay that long until the nurse said: “I’ll see you next week!” From that moment on, I lost it and almost EVERYTHING changed.

We got to a point where the paralysis moved up in my body. My paraplegia wasn’t limited to my waist anymore, no, it moved to above my shoulders. Believe me when I say that you have no idea what you’re going through when that happens. Your mind does not get the time to process this. Your body is ahead of your mind and then you need to adapt, it is the only thing you can do. But how should I deal with it if I was capable of doing everything at first and that turns into almost nothing?

So they did an MRI scan and result showed that all of the tumors had grown. Really; I have never been thát angry. Why, after two-and-a-half years of pushing through, fighting and never giving up could I still not have a bit of luck? Where is my bit of luck? Personally, I believe that I deserve a hundred pieces of luck already. And come on, I have to live with this. t’s not like that I can turn the feeling in my stomach or left toe on and off whenever I like. That makes me upset. Not knowing what’s going to happen, every day. That day was one of my biggest nightmares and guess what: nightmares can come true as well.

Anyway, a month and a bit has passed and some of my functions are coming back. This is good news, because the longer you lose an ability, the lower the change that you might get it back. My right arm is almost back to normal, but senses still lack in my fingers. It could be that the feelings in my fingers come back, but for now, no one knows. Also, some feeling is coming back in my torso. You could say that the new paraplegia has been reduced by half, but this is far from good. I keep discovering new things like this on a daily basis, but again, no one knows what will happen next. Currently I am getting back into a rhythm during the day and I’m sleeping quite well again, which is good! Also I’m finally able get out of the house again and take part in some activities, such as the fundraising dinner (which was very impressive!), going to the forest for a stroll, and I even went to the movies and saw the Lion King! You can imagine that it’s quite challenging for me to do these things, but for some reason the amount of fun and excitement give me the energy to do this. That is the fun part! I feel well, as far as I can be! I’m having a great time with all the beautiful people around me, it can’t get any better than that right?

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