Two years ago, Francis was diagnosed with MS. Six months ago Francis was diagnosed with fatherhood. First, he felt frustration, then joy - and now frustration again as the two collide.
My MS journey started rather gradually. My right-side vision dulled, my balance faltered, I developed numb patches, swallowing got unreliable, and small muscles kept twitching in my lips, eyelids, and tongue!
Plus, many other little things in the early MS constellation.
Then, I went through a spate of frequent sudden contractions of my entire left hand, which yanked me up the MRI priority list in the midst of pandemic panic.
Relapsing remitting MS was confirmed. After one long year from symptom to prescription, I was on Kesimpta.
Another year after that, I became a father.
Before my son was in the picture, I got a sneak preview of his early life. Preparing to start an immunosuppressant therapy like Kesimpta involves a hefty catalogue of vaccinations.
On surveying the list, I had two different reactions from two different nurses.
One asked what I’d done to annoy my neurologist (nothing, I swear). The other remarked it was like I was a newborn all over again.
Little did I know.
I usually feel especially weak for a day after an injection, and since I had to be there for my partner, pressing ahead regardless didn’t seem wise.
I didn’t regret that decision as I carefully drove home at 3am once my fatherhood was confirmed, banished from the hospital until morning, nor as I drove back again at 8am after a scant few hours’ sleep.
He’s not the best at nodding off, so sometimes he needs a bit of help: hold him horizontally, and sway from side to side for five to twenty minutes.
Alas, MS can get in the way. There have been days where I’ve found myself kneeling over him as he cries, overtired, at a loss because my fatigue and instability are too much to contemplate picking him up and rocking him.
So, my wife takes the physical burden, and I try not to feel guilty despite her loving reassurance.
On good days I shrug and joke - we’ve decided “tingle bells” may be the anthem of this Christmas, in reference to my ever-present pins and needles - but on bad days I’m anxious about the future.
I’m fortunate to be able to play with my son and support my family. But my MS is progressing.
Like I hope he understands when I have to think carefully about toilets, or when I need to abandon plans because I’m too fatigued, or when I fall over at home for seemingly no reason.
Maybe he’ll just find that last one funny.
Still, there is a silver lining in all this. MS reminds me not to judge a book by its cover, and I’ll try to teach my son the same.
