-
An open invitation to vent about lost abilities
One of our members, @robin-c , wrote a great guest column for SMA News Today, and I encourage you all to read it.
In it, she talks a lot about the grief felt after losing an ability due to disease progression. I commend Robin for sharing this with us, as I feel like this is a topic that isn’t talked about enough in the SMA community.
Know it is absolutely OK to feel hurt or angry when SMA robs us of something. And today, I wanted to open the floor to anyone who wants to vent about abilities lost and the grief that comes with it. Please know you’re not alone, and we’re always here for you.
-
5 Replies
-
Hi Everyone
Living with SMA while growing older feels like I’m forever caught between two narratives that refuse to overlap. Not so much a vent, but just to share of the disappointments and difficulties withe having SMA and then ageing… I have particularly noticed that those who have you for a fair amount of time, don’t seem to make allowances for the two. They either go on only seeing you with SMA and all that that goes with it or they now see you as ‘aged’ and deal with you as an older person needing older person things! And guess what when this latter response happens – your disability seems to magically ‘disappears’!
Over the last seven [7] years or so I have felt like having to continually fight to remind everyone including doctors, nurses and carers that hey, that thing which you might be proposing I get/use might be fine for an aged person who is still ambulant say, but is totally useless for due to my disability…. blank stares greet my reminder that SMA never takes a holiday; only occasionally does someone pause and confess, “I simply hadn’t considered both age and disability together.” The rarity of that response tells its own story.
I share this not to vent as I said in beginning these thoughts, but to invite a simple shift: see the whole person—disability and ageing intertwined—so solutions fit the life actually being lived.
Stay strong!
J
-
You bring up such great points. Now that I’m in my mid-thirties, I’ve started to question whether or not my symptoms are SMA-related or the very early signs of simply growing up. I know I’m still young, but my body feels different than it used to some days. My biggest problem lately is back pain. At first, I thought it was related to SMA, but after speaking with my non-disabled friends, I realized they have similar experiences too.
With better medical care, treatments, and more knowledge about SMA, our life expectancies are growing longer. It’s a huge blessing, but the curse is that not many people have explored this territory before.
Do you have any tips for advocacy in this area?
-
Thanks for sharing your perspectives. Really helpful things to consider when advocating for self when working with medical providers.
-
-
A while back I actually made a list of these. I wrote down things that I miss being able to do and I kept going until I couldn’t think of any more for a few minutes.
https://blakewatson.com/journal/things-i-miss/
blakewatson.com
Things I miss - blakewatson.com
Let’s be sad together for a moment, and then get back to our regularly-scheduled programming.
-
Oof, I relate to your blog so much. It’s the little things that I miss the most, like scratching an itch, turning pages in a book, feeding myself… Heck, I can’t even eat by mouth anymore. What I loved most, though, is how you ended the blog by saying, “Let’s pour one out for where we’ve been and turn our attention back to where we’re going.”
At the end of the day, that’s all that matters.
-
Log in to reply.