Today I stopped by the office and on my desk is a picture of my daughter, maybe at 2 years, with her feet up in the high chair, leaning back laughing. I remember taking that picture. I remember her laugh and how she could take off any clothing you put her in. She was a free-range baby.
I walked out of the offices and went downstairs to the sanctuary and saw my daughter up on stage. She’s a young lady, but she still has those long legs and that joyful grin. It catches me off-guard because there is a gap of time missing. In my head, she is still a little younger, but I am trying to work that out. Surely I won’t always think that my daughter is 12.
So much of my life seems to pause in my brain in 2015 or early 2016. I struggle daily to remind myself that this is a symptom of my brain and reality is in the future, not the past. It’s not just my child, it’s everything. It can be overwhelming.
The worst part is that I don’t think most people can really understand or appreciate how fragile this makes my grip on reality. It doesn’t even seem life something important until it is your brain that is not getting the message. Then it becomes huge and you have to figure out how to deal with it. I have to figure out how to deal with it.
There are things about our conditions that most people will never be able to comprehend. The best we can hope for in many cases is love and support, and TRUST ME, that means more than anything else. Sometimes I don’t want my family or friends to understand the mental anguish I deal with. I don’t want them feeling bad for me. I go to therapy and I deal with many of these topics because I want to enjoy my family and friends. I am not a broken lamp they can fix, I am a person going through a rough patch of life but at least I KNOW people love me and care about me.
It breaks my heart to think that there are people who go through this or any illness alone. I don’t know what I can do to change this situation right now. How can I help other people form support groups and engage family members and friends? I have been taking notes and keeping track of what had and has not benefited me in the current healthcare system model. I want to know how we make things easier for people who have been through brain trauma to be seen by higher level specialists for intervals starting directly after the incident that caused the trauma. If I had seen memory specialists two and a half years ago, would it be as bad if we had intervened? I am just one person. How many other people share a story similar to mine?
I am going to find my platform and when I do, I am going to keep screaming from it until things change. I want to be the agent of change in this world. I want doctors to listen to patients and what they are really saying. I want patients to feel comfortable advocating for themselves because we have to be at the helm of our own health. I want everyone to feel like they are important to not just the doctor but to family and friends.
The Life of a Music Monkey 