Later this week it will be 10 months since I lost my profoundly disabled son Brendan Bjørn. In those 10 months I’ve learned a lot about myself. Or should I say, a lot has revealed itself about me.
Before my son died, and then in the time since, I thought I would leave disability behind me. After all, I had devoted nearly 18 years not only providing around the clock, nursing-level care to my beautiful son as a lone parent carer, but I had also devoted countess hours (indeed, about 16 years) to being an advocate for disability and carer rights, and to CMV Awareness.
But life had other plans.
Now I’m the one classified as disabled.
That is DAMN HARD to admit.
Once upon a time, I was a tomboy playing softball and soccer. Later, I studied the martial art TaeKwonDo for years, obtaining the rank of second degree black belt, and competed in national tournaments. I was a fitness instructor. I was an avid hiker. In other words, I was as fit as they come.
Fast forward to today and I am sitting here typing this while my feet and toes are driving me mad with neuropathy pain, numbness and tingling simultaneously. It’s chronic. It’s around the clock. It’s driving me crazy. The consultants aren’t sure what it is from and the preliminary diagnosis is fibromyalgia. The symptoms first began shortly after my first bout of COVID-19 in April 2020. I’m on medication for the pain now, but because of how the medication effects me, I can only take it at night.
Some days are better than others.
Some days I can walk without any issues. Other days I feel like I’m trying to walk with someone else’s feet. It’s hard to describe, really. I’ve had a CT of my back and hips to see if there’s anything of note there relating to this issue, but it seems not. Just the degenerative discs from years of heavy lifting caring work. I say ‘just‘ as I roll my eyes.
And then there’s the adult onset asthma. As with the fibromyalgia, some days are better than others. Some days I can walk to the shop without a bother. Other days I walk and have to stop halfway there and catch my breath. The shop is only 1/4 mile away.
I think I’ll skip over the high cholesterol (yes, I’m on meds for that now, too) and possible heart issue (yes, I just had a cardiac CT angiogram and am awaiting results). Enough is enough, right?
I had always imagined that I would once again, after losing BB, take back up hiking and being very physically active. To not be able to do so has been torture on top of the heartbreak of losing him.
I’m not sure how else to describe it, but it is hell.
Next weekend I am having an MRI done on my brain. (no jokes, anyone!) I’ve been having some vertigo-like experiences, random dizziness and such. Who knows, maybe they’ll find a reason for the fibromyalgia neuropathy pain? I sure do hope so.
Brendan Bjørn was always so full of joy. He never showed any bother at seeing his able-bodied brother or classmates running around. In fact, he got absolute pleasure out of it! In the early days of his journey, I was worried he felt left out or hurt or upset, but he quickly showed me that he wasn’t. The beaming smiles and the deep laughter at watching others around him play told me that he was happy. Being disabled from birth was all he knew and I suppose that was, to him, his way of perceiving the world around him.
Me, on the other hand, the one who spent 30 plus years of her life as a very active, sporty person, I’m not doing so well with this new reality. I’m actually angry about it. I can’t help but think that if I had received the proper supports to care for Brendan Bjørn over the years and been able to continue a daily life of my career and social activities including fitness and looking after my own health, it would have been different for me today.
I wouldn’t be sitting here in pain.
I wouldn’t have been forced to put off medical appointments for literally years because I couldn’t get the care for Brendan Bjørn.
So much would have been different with the proper supports, and that truly angers me.
Governments should be smart enough to realise that if they fully supported carers with the needs of their disabled loved one, and enabled that carer to continue work and actually take care of themselves, it benefits all concerned. Think continuing to pay into the tax base in continuing a career while also being able to maintain their own health and not ending up disabled themselves…hello!!!
I read a quote once about disability. It said: We are all just one banana peel away from being disabled. It’s not meant to be flippant. It’s actually completely accurate.
One awful car accident.
One time your child falls off of their bike and hits their head.
One birth defect.
…One banana peel.
I thought I would leave disability behind me. Life had other plans.
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