As the waning days of Fall start to fade, these shorter days foretell the darkness of the Winter that lies ahead.
In many ways, at least for me as I battle this cruel and ruthless disease ALS, they all too starkly represent a painful analogy to the realities and challenges that await me.
So much darkness lies ahead. So much pain awaits me and those I love. So much loss will envelop our world.
That inevitable descent of Winter is upon us all. But the ever-dwindling light of each Winter day has created in me this tortuous obsession with the dwindling light left in my own life.
Yet, regardless the depth of that darkness or the foreboding silence of those days, I maintain a belief that I hope carries me through those trying times.
That being… despite this, I truly believe I am incredibly blessed.
This week will mark 18 months since my initial ALS diagnosis. A year and a half. Crazy. Trust me, we don’t celebrate the amount of time that has passed, but we’re damn sure determined to try and celebrate each and every day I have left.
My quarterly ALS Clinic was scheduled for earlier this month. I skipped the in-person clinic this time as it was scheduled on Melanie’s birthday, and to be candid (nothing personal to the fine folks in my ALS care team) it is definitely not the way you’d want to share a special day with your spouse.
I did, however, complete an updated self-assessment ALSFRS-R test.
35.5
Obviously, as is the case with a progressive motor neuron disease, the scoring never gets better. My score was down another two points from July. Inching closer to that dreaded 20-handle.
A drop of only two points would normally be a welcome outcome – as the ‘average’ decline is about 2.7 points per quarter (although remember, there is no true average ALS journey).
Unfortunately, in my case, the new score doesn’t really jive with the realities of how my body is responding. The general weakness and specific pains have now come to dominate my days. Actions and activities that you’d previously never considered to be laborious undertakings (such as putting on socks or combing your hair) are now ridiculous struggles, all too often completely out of reach of my now limited physical abilities. So many things that were assumed, expected, even enjoyed as part of my former everyday existence are now but fleeting memories of a Honey-Do list long gone.
Still, I feel incredibly blessed that the Big Three (at least they’re my big ones) – Speech, Swallow, and Respiratory – were all still at +4 in the scoring. Remember, we celebrate all our victories. The ability to keep talking, eating, drinking, and breathing are definitely all victories to me.
I did take a full-point hit to handwriting, and half-point hits to feeding and dressing myself. Normally, I would ‘write-off’ (pun intended) the handwriting issue, but it’s real, and my ability to grasp a pen has deteriorated significantly. Part of that is caused by the dying muscles and lack of strength in my hands, which is then compounded by them being perpetually frozen. (I’ve learned that dying muscles can prevent proper blood flow, which causes my hands – and especially my feet – to feel frostbitten nearly 24/7. There’s your awareness/educational ALS highlight of the day).
The half-point losses in feeding and dressing are frustrating. I feel like I’m 58 with the needs of a three-year-old, and candidly, it’s pissing me off. Problem is, I know it only gets worse from here.
But I’ll repeat, in case I wasn’t clear earlier… despite this, I truly believe I am incredibly blessed.
This past week, I read that yet another member of one of my ALS online groups had died, only 51 years old and just 13 months after diagnosis. Thirteen months. Did I mention I’m 58 and now 18 months in? That is an incredibly troublesome and disconcerting reality.
According to the numbers, my most recent ALSFRS-R score gives me an 80% chance of living another nine months.
You have no idea how hard that last sentence was to type… not just physically, but emotionally. The finality of it, having been given a specific timeframe, providing probabilities, all that it entails.
But you know what? F*ck that. I call bullshit. Ain’t no way I’m going down without a much bigger fight than that.
Whatever plays out, it is what it is. As I’ve said before, I didn’t ask for this, but here we are. Although there are days that are seemingly insurmountable, I’m determined to keep trying, to keep fighting, to keep living.
And throughout it all, I will continue to do my best to maintain the *PMA that I have long dictated as a life pre-requisite to anyone who would listen (and many who tried not to). Life is what you make it. Sometimes it may seem unbearable. Often it may seem overwhelming. Frequently it won’t be easy.
That said, you’re given but one life, and it will be solely what you make of it. In an unbelievably fortuitous blessing, you are in control of how you decide to live it. I mean, what more can you ask for?
And to confirm, PMA means “Positive Mental Attitude” – which to me is exemplified by the thought…
Despite all this, I truly believe I am incredibly blessed.
