I learned my father has ALS on Saturday, after being reassured Friday that ALS was definitively off the table. Saturday, as I ventured out on a much needed family boat trip, I was told the doctor in ICU wanted to have a family member present for a conversation in an hour. Thinking it was likely about adjusting a simple medication, as many talks have been in recent weeks, I said, please just have them call me. So they did.
We needed to let you know as soon as possible. Your father has ALS. We know this beyond a shadow of a doubt, due to the test results we have received via the EMG done on Thursday.
How can this be?, I asked. They said the exact opposite yesterday.
Yes, we know; we are sorry about that, they said. The residents felt due to his strong reflex responses that he was in the clear. Yet, when we received his neuromuscular response testing, we were concerned and felt in conflict. We called in all of our expert panel members and doctors on neuromuscular disorders and ALS. We all concur. Your father has ALS.
And I burst into sobs. Snot flying, heart screaming sobs.
My daughter started climbing on my back and petting me, alarmed, concerned, loving.
My husband sat in front of me and took my hand, as we bobbed in the no wake zone, and I sobbed as steadily as the waves rolled.
My friend and Daisy's friend, our boat mates for the day, sat quietly in the back of the boat, holding hand, holding space for our pain.
What fresh hell is this?!, screamed my soul.
How can one human (two, counting my sister) lose both beloved parents to the same undignified, wretched, painful, most dreaded of diseases?
ALS is a motherfucker.
I know.
I went through this before. We did, as a family.
2011-2012
My mom lost her right arm, then her right leg, then her swallowing function, then her left leg. And at the time of her passing, her only working appendage was her left hand. She died by drowning in her own fluids.
My father's right arm is numb, his right leg is almost non responsive, it's so weak. He started complaining of numbness and pain in his left leg and his left arm a week ago. The strongest of his appendages at the moment is his left hand. He has pneumonia. He can't swallow. He can barely speak in a whisper tone.
Apparently, there is such a thing as Conjugal ALS. My aunt sleuthed this out; no doctor has told me. According the literature she found, this has only happened 19 times in recorded medical history.
Now 20.
Fuck this fucking shit.
Pardon me. Please understand, anger is indeed an ingredient in my current cocktail of emotions that swirl inside.
And despite all of that, here we are. And my dad needs me. My family needs me. We have many days ahead, many tests ahead, where they will be trying to help us discern his exact stage, what his optimal care plan may be, and whether or not I can take him home for his final stage of life. One breath at a time, one step at a time, one prayer at a time, one hug at a time, one tear at a time, we march forward.
Your prayers are welcome. My heart is breaking. My soul is in tact. She knows the way.
I pray for grace, strength, peace and acceptance.
I pray for my father's ease during this transition.
I pray for courage for my entire family, so many of whom have been showing up along this journey the last several months like complete and total bada$$es.
Thank you for the love.
I am so grateful for the outpouring of support.
Mere words will not suffice.
One of my friends said, It's not fair.
And to this my response is,
Fair is a human construct.
Our mere human minds cannot possibly fathom the infinite wisdom of the Divine.
And so now it's in God's hands.
And my job is to lean in, be guided, let go, and trust.
And so it is.
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