Today is a day on which I would have gone jogging under normal circumstances. I remember the paths in the forest, where I jumped over tree trunks, puddles and slugs, the smell of moss and leaves, deer that I sometimes met and which then shyly sought the distance. The branches I dodged, the walkers with dogs I sometimes met, sometimes I had my goddog Paula with me, the best dog there ever was. She passed away the month I got my diagnosis.
I now see joggers out of the window running along the river and I envy them. I don’t go running now, it’s not the 12 kilometers in an hour like I once did that makes me proud, it’s that I make it to the basement to the washing machine and am able to do my own laundry….
My diagnosis is now two years and two months old. A lot has happened in that time. Has it gotten easier?
I am now 500 kilometers away from my former home and friends. Whether I will ever see my birthplace, my old father again, is questionable. Corona makes that even more difficult.
First there was the diagnosis, shock without end. Then the deterioration, and that I lost one thing after another that defined me. First the man on my side was gone, then job gone, car gone, bike gone, apartment gone, high heels gone, surfing equipment gone, many friends and family members gone, my hair gone… My bunch of keys got smaller and smaller, the circle of people around me too. Every loss made me, instead of job and career came retirement. I made the mistakes of moving into a residential group that was not at all what was good for me, for which I left my apartment, my home and my friends. In the meantime I have another apartment and a lot of new wonderful people, who have also become friends in the meantime and are insanely great at helping me and supporting me. I have lost a lot of time, possibly my last mobile months. But the important thing is to keep going – and even if I don’t go running now, I’m happy to be able to do my own laundry.
When I look out of the window and see the joggers, cyclists and the first cabriolet drivers taking advantage of the first rays of sunshine, it makes my heart wistful. Without you. I just think.
Many things have become worse. Balance. And gait. Two years ago (even one) I could still sneak into the supermarket and with a shopping cart you almost didn’t see that I had anything. Now I can move outside only with help, with a cane and if I have someone to hook, or with the walker (which for me is the symbol of the downfall). I don’t know how far I can walk, a few hundred meters? Blood pressure fluctuations makes many things impossible, the fear of passing out is always there. The bad energy, in the morning after brushing my teeth, showering and getting dressed I am already fully exhausted. At least I’m glad that I can still do all this myself and don’t need a nursing service. Speech is much worse, I am quieter, slower, babble and stutter. Every phone call scares me. More and more often people ask “excuse me?” – which I still prefer than when people think I am banana in my head or drunk. Poor fine motor skills force me, everything falls out of my hand, I can’t hit anything, eating with a knife and fork is a challenge. I have been wearing glasses instead of contact lenses for a long time, so that I don’t tear my own eyes out and that I don’t tear a fortune in contact lenses. I spill, smear everything and wear out tons of clothes because I spill on everything. I always run straight to the toilet to avoid an embarrassing accident. Especially getting up at night and in the morning gets me down. Going anywhere scares me, because I often don’t know where the next toilet is, and in what condition.
But the symptoms are one thing, you book changes, you hope that it will get better, or you learn to deal with it. The other thing is the psychological side. Yes, after two years I don’t cry every day and I take many things stoically and pragmatically, I learn to accept help and to ask for help. Nevertheless, it has not become easier. Nevertheless, one does not get used to the whole thing. Yes, I don’t cry every day, but I could always. It has rather become a silent, inner crying, without tears. In the meantime I know that crying only gives you a headache, so I try to avoid it. But the thoughts of many things from my past could make me cry within seconds.
What I find remarkable are the memories. I remember details, you wouldn’t believe it. Especially before falling asleep and after waking up, this “reminiscing” is very intense. Sometimes so much that the return to reality, is a really painful landing. Still, I love these “trips” and I remember insignificant details like a jog in the woods very vividly. It has become my cinema yet.
What I think is important, and what makes me function, is that I allow myself this indulgence, then I am wistful and cry sometimes but then it’s over and I then live my day. Then I try not to delve too deeply into reality, function pragmatically and do one thing at a time. My feelings of success are different now, vacuuming, washing up or washing clothes is a huge success. I take care of things that concern my future and I neglect things that I cannot influence. Many moments are frustrating, you must not let these moments get to you too much. And try again tomorrow. The list of things I can’t do anymore is long, I just don’t put myself into it or only briefly. Once lie down in it, suffer briefly and intensely and then get up, straighten the crown and move on.