When I was diagnosed with a brain tumor I had no idea what to expect. I knew that from that point forward nothing I experience would ever fall into the category of “normal”. I was determined to not become “that weird girl with a brain tumor” and so I didn’t. I fought with everything I had to hide my condition from everyone who mattered in my life. My best friend became my caretaker and became the most important person in keeping me safe. When I started having blackouts he was the first person to make sure I had a GPS tracker installed on my phone and a note in my pocket at all times with directions on how to contact him when I got lost. He was the person I needed most when I didn’t know I needed anyone at all.
One month later my best friend found me sitting on a sidewalk in Oklahoma with no recollection of how I had gotten there. I didn’t remember my name. I didn’t know who I was. I didn’t understand why I had been wandering around outside in the middle of the night. An hour later I regained my memory but had no recollection of the events of my amnesia. I had completely blacked out for the first of what has since been hundreds of times.
Since that first night of wandering off in Oklahoma this past summer I have done it countless more times. Most recently I thought it would be a good idea to wander off without shoes or a jacket in 32 degree weather. It took almost an hour for him to track me down and find me despite having only wandered about a half mile from our apartment. When he found me my feet were so cold and cut up I could hardly walk from where I was sitting on the sidewalk to get into his car.
The reasoning behind my walks is still in large part unknown. I almost always choose to wander off in the middle of the night when anyone who could help me is asleep. I almost always wander off when I am scared or angry with whoever is trying to care for me. And I always eventually get too scared or cold and ask for help, to which my best friend always comes to my rescue.
As the thing in my head continues to shrink my behavior continues to become more and more unpredictable. I’ve started blacking out less and less and remembering more and more when I come back to reality. I have started having increased moments of severe confusion as opposed to forgetting who I am entirely. I’m getting better, my brain is healing, and I can’t thank the people around me enough for what they have been doing to make me better as fast as they can. However much to their dismay, it looks like I will continue to enjoy long shoeless walks in the middle of the night and forgetting my name.
If you have any questions about life with a brain tumor feel free to read my other posts or ask in the comments below.