Feeling Left Behind at Times
With most of my posts, I try to offer some kind of helpful information from my past experiences. But sometimes I feel melancholy enough where I just want to share how I’m feeling about my disability and SMA.
Knowing somebody else is also going through the same emotions will hopefully be just as comforting.
Bad days and mental health challenges
But, nevertheless, there are unfortunately bad days with SMA aside from dealing with the never-ending medical side of our disability. Days where I feel nostalgic for memories I don’t have or yearning for what it feels like to be a typical 25-year-old.
The majority of my more depressed times tend to creep up on me when I’m lying in bed at night. Fortunately, it comes out of nowhere and never stays for long when I compulsively compare myself to my peers.
Questioning what life would be like without SMA
What is it like to travel without worry? How does it feel to go to a bar and meet new people and not fear they can’t hear what I’m saying? When will I ever experience the luxury of living independently?
Yes, independent living is a luxury most disabled people will never experience.
Growing up, I rarely saw myself as different from my friends except for the obvious wheelchair I was in. I think this is because all the things I care about now (still living with my parents, incapable of traveling alone, wishing I could care for myself, etc.) weren’t factors as a kid.
Subconsciously, I understood that everyone my age was also living with their parents and being cared for in some capacity.
Feeling like I can't relate to friends
However, it seems like all my friends started to progress while I stayed the same at some point. There are times when I feel such a strong disconnect from my counterparts even though I too have a career and just bought my own home. But it’s as if they don’t know what I’ve gone through since being a teenager and I can’t relate to the experiences they’ve had.
And, maybe that’s ok. As much as I want to feel a part of that culture, I now recognize I have my own community to fall back on for support. I’m ashamed to say that as a kid I never enjoyed hanging out with other disabled people.
I always assumed we were on different levels in terms of how we saw our disability and what we wanted to achieve in life. That still may be true in some circles.
Support from the spinal muscular atrophy community
But over the past few years, I’ve started to branch out and I really love interacting with the SMA community because I know they too are feeling like me.
But don’t get me wrong, I also have some able-bodied friends who I love and can begin to appreciate our differences in life experiences. However, it still sucks to be left out of birthday parties because the venue wasn’t accessible or not being invited on the group vacation. I probably wouldn’t go but it’s nice to feel thought about and included.
Anyway, that rant was just to let you know that you are not alone. If you have SMA or any disability, I know just how you feel and I’m here for you.
Have you met our advocate team yet?