I just keep thinking about what I want to say and make this to be about. My AVM was discovered a year ago and my craniotomy was done in November 2016. So, I have been through so many different things over that time. I jump between starting at day one and giving all of the good, bad, and ugly things up until now. At the same time, I want to start with where I am now because now is when I seem to be struggling the most. My brain is part of that problem. I have trouble focusing sometimes and if I don’t write down the thoughts I have on my mind I tend to forget them when I do decide to write a post.
So, maybe I will start with today and go back as I feel like it. A craniotomy isn’t a fun thing especially when it involves the speech area. I still have problems every day. I’m working, but I’m not happy working. I do it because I have to pay my bills and keep my health insurance. It’s hard when I look exactly how like looked a year ago, but my mind doesn’t function the way it did then. People that don’t know me and even those that do know me don’t really understand the difficulty I have. I’m an accountant, I prepare the financial reports for the company that I work for. It was tough when I first went back to work two and a half months after my surgery because I actually had to re-remember things that I could do in my sleep before. It was overwhelming and it still is today. I find little things that I still forget how to do and try to avoid questions from co-workers because it is just too much sometimes. I tell people to email rather than call so I can make sure I understand what they are asking me and I can put together a full response that makes sense. I’m in a tough position because some jobs may be eliminated where I work and I can’t help but worry that mine will be one of them. I can’t blame my employer if they go that way because I’m not the person that can just jump in and cover all the bases. On the other side I need them to keep me because I feel that I won’t be able to find another job. My mind is in there, it is just not as sharp and quick as it used to be. Who will want to hire a person that takes too long to learn things, can’t make sense in conversations or answer phone calls. I stress over this every day.
I guess in writing this it makes me really want to make others understand what a brain injury is like. Like I said before, I look like me. People that meet me for the first time would not know that I had brain surgery. They probably just think I’m a little weird if I simply smile or defer to someone else to do the talking or say “what” multiple times because I couldn’t follow the whole conversation. I feel like I need to tell every person I talk to that I had brain surgery, and I won’t always say the right thing or that I can’t always remember the word in that sentence. I don’t want to have to tell everyone, but I want them to understand why I am the way I am. On many days I want that shaved head back so I don’t have to tell people why I have to leave a room if there is too much noise going on.
My life today is not different from it was last year, but it is more difficult. I have to pay attention to my body, turn down the noise around me, avoid all the stress going on(so far the hardest thing of all) and get help when I need it. I’ve been considering making this a private journal for myself, but I guess if anyone reads this and understands or finds some help I would consider it a success. We’ll see how it goes anyway. Feel free to ask or comment on anything. Thanks.