Things That Make Me Angry About SMA

Having a disability like spinal muscular atrophy is extremely challenging. Every day is a battle between my body and my mind. Frankly, it can be brutal inside. And with that brutality can come a little bit of anger.

I'm angry at my disability

Okay, maybe sometimes a lot of anger. I wanted to share some things about my life with SMA that really upset me because I don’t want someone else to feel alone. I want others to know that it’s okay to be mad at your disability sometimes.

The world tries to teach and tell us that we just have to accept what we have and, to an extent, we do. We can’t change our SMA. For us adults, it’s here to stay. But we are also entitled to feeling angry and sad about the life we were handed unexpectedly. These SMA cards were thrust upon us and we’ve learned to adapt them to our lives and make the best of it. It doesn’t mean it’s been easy though.

Not being able to walk

Obviously, if you’re wheelchair-bound with SMA, not being able to walk is a huge letdown. Some days, it physically pains me that I can’t just get out of my chair and walk into the kitchen and make myself dinner or grab a drink off the shelf in the fridge. It makes me want to sob when I can’t chase after my nephews and nieces and play with them in the back yard. I’ve always wondered what it would be like to run and jump and feel the blood actually pump through my body during a workout.

Not being able to drive 

There’s nights when I can’t sleep I wish so badly I could just get in the car and drive around with the windows down and be the person behind the wheel. Some of us with SMA are lucky enough to have adaptive driving abilities which is amazing, but I’m extremely weak and it just wouldn’t be safe for me or others on the road for me behind the wheel. But it doesn’t make me feel any better that I can’t do it. I’d love to be able to crank Taylor Swift and just drive wherever my heart desires.

Using the bathroom

I’ll forever be grateful for my mom/caregiver who helps me with my personal hygiene and using the bathroom. However, it infuriates me sometimes I can’t just go to the bathroom and clean myself up on my own. The lack of privacy is a hard pill a lot of us had to swallow when we were younger and unable to properly care for ourselves.

Moving my body

Its so hard knowing what your body needs and not being able to just simply do it yourself. I’ve had so many crying sessions about this aspect of my disability alone. Trying to explain to someone where to move just a section of skin on your leg so it doesn’t hurt or get sore is infuriating at times. Explaining to them how to position your neck and arms and butt in a way that’s going to be comfortable for more than a few minutes.

These are just a few of the things that get to me from time time. I’m sure I’m not alone in feeling this way. It’s okay to feel angry about your SMA, you just can’t let it consume you. I tend to have to remind myself of the things I can do even though they might be small like brushing my teeth, picking out my clothes, voicing my opinion. Those are all things I still can do and that helps me be at ease with the things I can’t do.