Manic Monday

I am so glad the weekend is over. It started out ok, I woke up on Saturday feeling good and motivated. I got up, had my normally breakfast and then decided it was time to go out and walk. I decided not to count the rounds, but rather grab my headphones and put on the latest mix by Geo and just walk until I felt I was done.

As usual, the first round was shaky as my legs had to wake up and figure out what I wanted from them. After that, it was full steam ahead. I did my rounds, I then did large figure eights in the parking lot and also went up and down the little steps that lead to the front door. I walked faster and although I had to stop to find my balance a few times, I felt happy and confident. I walked for forty-three minutes. I took a break, went inside and put my feet up for circulation. I wouldn’t believe how well I had done.

But then something happened. A few hours later when I tried to walk forward, I would walk to the right and hit a wall. It happened over and over. Instead of standing confidently, I felt like I was going to fall over. Instead of feeling confident and improved, I just felt confused and disappointed. This unknown body was betraying me, changing the rules.

Ulco and I went out to dinner that night. My first public outing someplace other than a hospital. I had expected to walk in with confidence but instead walked as though I were heavily intoxicated. I had to lean on Ulco for help and felt the whole place was staring. I am getting used to the stairs and pointing. It happens at the hospital, mostly children. I try to ignore it, but it just makes me feel even more out of place and awkward than I already do. I was so happy to be home after dinner and since then have no desire to go anywhere.

Even getting out of bed seems pointless. My whole day consists of getting out of bed just to walk to the sofa, then from the sofa to the table a few times and then back to bed to sleep. Yesterday I stayed in bed most of the day. Ulco told me to not sleep so much or I would be awake all night, but for me, it doesn’t matter. Sit on the sofa all day or sit on it all night, it is all the same to me.

I feel like I took a great steps forward and then moved kilometers back. More and more I find it hard to be motivated. I am not really interested in doing anything. I am not interested in easting or showering or walking or seeing people. I am tired of having to make other people feel ok or comfortable around me, telling them it isn’t so bad and that I feel better everyday. I am tired of people watching and cheering me on while I walk as though I were a little kid. I understand their intentions, but at the moment it just makes me feel like a freak.

I write this because if I don’t, at stays inside and grows. I figure it is better to get it out. I read the comments from people, but I don’t understand them. I don’t feel like or see that person people mention. I don’t feel strong or brave or inspiring. I feel broken, scared and completely alone. I don’t know who I am anymore. Even my name seems odd and foreign, like someone I used to know, but who is no longer here. That scares me. For so long, I have been aware that a lot of people don’t really know me well, and most people like me based on an image of who they think I am. Even I like that image, but what if I am not that person anymore? So many parts of me feel, act and sound different. How can I be Robb when I don’t feel like that person anymore? I hate being trapped in this space with all these thoughts. I find it so confusing and I just wish one person could understand, tell me that what I am feeling is normal and that someday it will get better. I wish someone could tell me what to do besides be patient and persevere. I am tired of being patient and right now, I don’t want to persevere. I don’t want to do anything.

Maybe this is a thankless and horrible thing to say, but sometimes I wonder if it would be easier if I had lost my memory, even if for a bit. I wouldn’t sit here with all these before and after feelings. My body would just feel like my body and I wouldn’t know about all the things I can’t do. I wouldn’t think about the past few years wondering why losing everything just wasn’t enough. I wouldn’t sit here wondering how this will all end and how long it will take. I am just over three weeks further but feel like I have just landed back at square one.

I know this will pass, I know it is just a bad patch, but right now I feel I am in the middle of it and it really sucks right now.