Vulnerability

Here I am again all banged up due to an embarrassing fall. Previously, I have been lucky with falls where the scars remained invisible. Then I have also had falls where I could hide the bruising. And others where I could not, but the scratches and bruises were in less noticeable places and less embarrassing. This is my first time scraping up my face as an adult. All from a simple slip. Three scratches and glue instead of stitches. I can't even hide the scrapes on my face with makeup because the makeup will most likely cause an infection. And it hurts to smile.

I don't even feel like I look like myself. I fell trying to complete a simple task; taking a shower. My foot slipped out from under me and I went down fast and hard. On the way down I managed to hit my shoulder, and bang my chin as well as my forehead against the porcelain bathtub. It was one of my biggest fears becoming a reality. I didn't have my phone, but luckily my mom was home. I didn't know what to do so I started screaming for her. Here I was, lying naked on the floor, screaming for my mom. A sense of my dignity was lost.

Another fear of mine is hurting my arms. I am so reliant on them I don't know how I would get off the ground if they were too injured to work. Today, I managed to get myself up by crawling out of the bathtub onto the bathroom floor. From there, I pulled myself up with my arms to a seated position on the toilet seat. Finally, I was able to stand by pushing against the sink to lift my legs into a standing position. All of this with the shoulder I fell on and pressing weight on the ankle I sprained a few days ago. Again, all of this directly in front of my mom.

Once my mom saw that I was bleeding and discovered I hit my head, she wanted me to get checked out. To the Emergency Room we went. In the ER, they glued my chin back together and checked to make sure I didn't have a concussion. They also checked out my shoulder. One thing I was surprised about was they didn’t ask about my falling. Normally with every doctor visit I am asked about my falling. They also didn’t even mention that I have Spinal Muscular Atrophy. In a way, it was nice to not need to explain it to someone else in the medical field. Another fear of mine is hurting my arms. I am so reliant on them I don't know how I would get off the ground if they were too injured to work.

Days like these it is hard for me to stay positive. Everyone tells me how well I am doing for someone with this disease and how I'm so lucky. They say I’m lucky that I can still walk so well and that all things considered I am doing great. Days like these, I don't feel lucky, just scared and vulnerable.

I am also now three days passed when I was due for my next Spinraza dose. I can't help but wonder if that might be why I have fallen twice now within two weeks when I hadn't fallen for at least four months before. I also wonder if Kaiser will use the ER visit as another ding against me to try and deny me treatment. The waiting game is the worst part right now. The committee will meet on the 30th to determine my fate; whether they will cover Spinraza for me. The only treatment available for people with Spinal Muscular Atrophy. The same treatment that has allowed me to sit in a squatting position and rise from a chair without using my arms to push myself up.

Today, I am feeling weak and vulnerable. The picture I took of myself doesn’t even look like me. Originally, I was not going to take it because of how awful and embarrassed I was feeling. Then I remembered the reason I wanted to write in the first place. I wanted a safe place for people that had my experiences to know they are not alone. We are in this together. To anyone else who may be feeling vulnerable please remember you are not alone. And it is okay to feel this way for a little while. Just remember true strength comes from within and the battles we fight everyday are a reminder of that.