Single White Male Seeking Hope

Today really scared me. You see all along, I’ve kept a piece of me in the back of my mind as I fight this disease. Who I remember I was. Someone who was sick even at the time, though I didn’t know it, but still, that was a piece of who I was. What made me happy. What I enjoyed about life. How I defined and recognized myself. It’s been a long time since I’ve been that person, but keeping him in mind was a comfort that I might return to being that person, maybe even an improved healthier version.

But today that person is gone. I’m not sure when I realized it, but I can no longer remember who I was. The physical side of Lyme disease is a nightmare. A hell unlike anything I’ve known in my 36 years. You can’t describe the pains that go through your body. The pain that moves from bone to muscle to joint to organ. The pain that never ends, the nerve pain that covers you from head to toe, a pain that never goes away. As awful as all that is, it’s nothing in comparison to the mental effects of this disease. It’s so much easier to fight a form of physical pain when you have your mind. When your mind is gone it becomes very scary. When you realize you’re telling the same story again for the second time. When you can’t remember your address to fill out a form. When you’re driving in your neighborhood and can’t find anything even remotely familiar. When the mood swings and irritability begin to run your life and you have no control to stop any of it. That is the part of this disease that seems to be the worst, when you lose your sense of self. When you can no longer remember what you were like before being sick. That is the scariest part of this disease I’ve faced yet. I literally felt sick to my stomach today when I realized this, like I could easily throw up from being horrified at the realization.

The whole day has been filled with reminders of the person I can’t remember. Love. It seems like I can’t remember love anymore. To give it, to receive it. It feels so foreign to me now. I’m surrounded by it in so many facets of my life, but feel like a stranger to the concept of it. Friends. I feel them slipping through my fingers. Whether it’s the memory of why we’re now friends, or the loss of the ability to associate myself with them anymore, I feel more and more like a stranger to the people who know me best. I miss writing. I have great ideas that come into my mind all the time. Unfortunately, often before a minute has passed I begin to lose the concept to the thought in my mind. If I can’t hold on to the thought long enough to think about it twice, how can I possibly put anything down on paper. I fear never being well enough again to ever write, and that scares me. Writing was how I defined myself to others. It was an extension of me, that I could easily share with those around me. I’ve gotten incredible satisfaction over the past few years with writing, on so many levels, I grieve for that now. I miss being able to express myself, to remember the correct words. Now I spend so much time trying to remember the right words to describe what I’m thinking that I forget how I’m feeling to share it.

Yes, of all the things this disease has taken from me, the parts of my mind it has messed up are the hardest parts to lose. I know there’s a good chance it will come back with time. But that doesn’t take away the fear of the present, laying here day after day finding it harder and harder to remember what it is that makes me me. I feel let down by myself, and regretful for the let down I am to others. No matter what the reason, or how understanding anyone may be, I can’t help but feel bad for all that this disease has taken away from the people I love just as much as it has taken it away from me. It makes me angry. It makes me sad. It makes me despair.

It’s easy to take a deep breath and say tomorrow is another day…because it is. But I’m not going to be myself any more tomorrow than I am today, and because of that it gets hard sometimes to hold on to hope. For 3 months all I’ve done is clung to hope for tomorrow. Knowing it will be many tomorrows before I can even begin to get any better makes the tomorrow in the here and now seem so daunting and empty, it makes it hard at times to even want to keep on fighting. And now that I feel I can hardly remember what it is I’m fighting for, since I no longer remember who I was, it makes fighting seem scary. Suddenly all that I felt I knew has become the unknown. Now I feel like I’m fighting for something I don’t know, and that takes some of the motivation out of it.

But night turns into day, and day turns into night. I have no more control over that than I do over the bacteria that ravishes my body on a daily basis. You can’t fight time, you can only roll along with it. So I lay my head down tonight, and hope that with the rising of the sun I can also find hope rising again and continue on the journey I’m on. I didn’t choose it, but I have to accept it. Here’s to a new day tomorrow.