Thriving With SMA

If you live with SMA, then you know the ‘waiting for the other shoe to drop’ mentality. I lived there for a long time, and sometimes, I am honestly still scared. But I have to remind myself that I finally have everything I need to thrive and no matter what, I truly will be ok!

Overcomplicating things

Thriving is strange for me, though. I have lived in survival mode forever, so how do I learn to live life? Through my reading and online content on self-help/improvement, I've learned that we humans actually overcomplicate life; we (mostly) have a choice to do whatever we want with our lives.

To me, living life fully with SMA (and where I'm at now) is trying my best to do what I can that day. I no longer beat myself up if my SMA controls my day, like, "Yeah, that absolutely sucks." But thankfully, that feeling is rare now. Although it feels like I've failed and I'm somehow to blame, I know I’m not. Everyone has off days; SMA is no exception.

Sometimes I think, “Wow I have all this free time, what can I do?” I remember in that moment how thankful I am, to be able to do what I want. Next, I take it minute by minute. The mind often wants to plan but I'm making my mind not plan, unless its absolutely necessary.

Focus on what you can do in the moment

A friend asked about anxiety and what to do. I was shocked by my answer: "Just focus on what you can do in the moment."

Anxiety thrives on a potential future that we know nothing about” I told her. For me getting my medication Lexapro has made my mind reset and forced me to be present and and do what's in my control.

To be honest, sometimes focusing on what's in your control with SMA can feel impossible but I do have control!

Not letting SMA rule me

For years I thought my SMA ruled me. It partially did, but without realizing it. However, I always had a choice; a choice to let SMA run me or me doing SMA my way!

My mom and I often discuss how important that is, to do SMA your way. It really is true that if you don't adapt to it in your way, it will run your life for you and such is true with life overall.

My journey in now thriving with SMA has taught me to remember two things; don't forget how precious this moment is. I remember praying to just be home in the dark days of the hospital. Now, I'm making myself remember that there is truly nothing else I need to be happy except my home and my incredible family. (Especially because my bed setup is just perfect for my body.)

Stop chasing your tails

As author and blogger Mark Manson says, “Don't try.” He says this in terms of the "backwards laws." The positive thing you're pursuing will led to a negative experience simply because you’re chasing it, like a dog chasing its tail.

You have to accept the reality of life, joy is fleeting but so is life. We will have good and bad. Accept the bad to know the good, stop trying for good and positivity all the time. And secondly, life really is what you make it. I truly can do what I want.

Finding my way to do things

My favorite thing about SMA genuinely is thinking, “How can I adapt this situation to help me?” An example is getting comfortable on a plane or doing things that able bodied people would do and finding my way of doing it.

To end, thriving with SMA leads to acceptance and acceptance doesn't always equal joy. It means knowing that it will knock you down sometimes, crying and finding a solution. Doing SMA in whatever way works for you and always speaking your mind in advocating for yourself. Thriving with SMA is possible. I never thought that it would be when I was younger, but it is.