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As the years go by, I’m learning how living with spinal muscular atrophy (SMA) is an ongoing education. In the last couple of years, that learning process took on some new challenges brought on by COVID-19. The pandemic forced me and many rare disease patients into even greater isolation.

As pandemic fears and restrictions ease, I realize I have forgotten how tedious it can be to get ready for an event or just to go outside anywhere in general. There are many steps for preparing me to go somewhere, and sometimes more than one person is required to help facilitate my journeys in the outside world. 

Scheduling a patient care assistant (PCA), in particular, makes me most anxious. No one is exempt from managing their strengths and weaknesses. Nevertheless, when I schedule someone to help me prepare for an event, I’m specific with whom I choose to feel my best. When these particular people are not available, planning can be much more physically exhausting. 

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If available, I usually break up the tasks at least between 2 PCAs (including my parents’ help, too). These tasks usually include doing my hair and makeup, and sometimes bathing and grooming. In addition, dressing and eating would need to be done as well. It may sound pretty feasible when written down; however, the dynamic of performing these tasks on someone other than yourself requires more time, energy, and patience. 

Communicating what I need can become mentally exhausting at times. When I’m not feeling 100%, it’s difficult to address what I need because I don’t always have it all figured out, either. Physically, it’s challenging in the sense I’m being handled awkwardly because my body is naturally awkward. When I’m being bathed or carried, I can’t help but put myself in a fixed state of tension. I guess it’s my defense mechanism trying to protect myself from possible injury? For what’s it worth, it doesn’t matter who is helping me. I feel that way regardless and it heightens my anxiety. It’s something I’m trying to work on, daily. 

Read more about therapies for treating SMA

I think most stress I get before I get ready to go out, I’m mainly responsible for. In my head, I always think I have to look perfect. I have to have my hair and makeup done precisely etc. But, I think by doing that I’m trying to make up for something I don’t have if that makes sense. For example, I’m insecure about my physical shape, so I try to overcompensate by trying to rationalize that perfect hair and makeup will fix that.

I’m realizing that’s unhealthy at times, and letting go of some of that might save me more time, and less anxiety. Nevertheless, it doesn’t dilute the fact that sometimes putting myself together exhausts me before I even get out the door.  Also, my strength, along with my energy, has declined as I age. I’ve always been a social butterfly, enjoying being around friends, and experiencing new adventures. 

However, at age 35, I’ve noticed I make more excuses to avoid leaving the house. This not only affects me, but it concerns my loved ones, too. It’s easy to feel guilty when you see those you love desire your presence and attention. At times, I feel guilty for not going out, and for not listening to my body at times.  It’s a difficult spot to be in because time is not something we can gain back. Meanwhile, I’m trying to manage my time and experiences more intentionally.