This is becoming a journal, and I’d love to chart our progress through the labyrinth of motor neuron disease, but on a day-to-day basis at least at this stage, little or nothing happens ― not physically or visibly. It all happens in the strange, claustrophobic little space inside one’s own mind. It’s all about what you imagine, and what you fear.
This is a journal of my own journey through the labyrinth, as well as Dave’s. This is where I record what I feel, day by day. Dave himself is doing pretty well at the moment. He’s holding it together and has just posted his official “Last Ride,” inviting old cycling mates to come and "tootle" with him and celebrate the memories. Cheers to him, and to all. Let it be a fantastic afternoon, one to remember forever. But my own little world is not so bright. I feel that I’m starting to lose the battle long before he does.
Tuesday brings another battery of tests. One is critical: Dave must pass the lung function test in order to qualify for surgery to fit the PEG (from medlineplus.gov: “A PEG (percutaneous endoscopic gastrostomy) feeding tube insertion is the placement of a feeding tube through the skin and the stomach wall. It goes directly into the stomach. PEG feeding tube insertion is done in part using a procedure called endoscopy.”)
That sounds simple enough, save for the inevitable warnings about the hazards of surgery. Any surgery. Want an ingrown toenail fixed? Hazard. Huh. But the underlying “omigod” moment for Dave and me, and for Mike, is that the surgery may not be approved. If Dave fails the lung function test, they won’t do it. What happens then? [My stomach turns over; I feel weird; see sparkles in my vision] Well, he continues to take his food in liquid/puree form for as long as he can continue to swallow. And as the MND progresses, and he can’t swallow…
That fear lives with me, an unwelcome lodger in my mind, and will for the next couple of days. I have to believe he’ll ace the respiratory test. I have to believe he’ll come through the surgery with the proverbial flying colors. There’s no other option, right?
Have a little faith. But fear seems to have taken root in my mind; my imagination is running away at breakneck pace; I can’t stop it. Does everyone in this situation go through this phase, or is it just me? This isn’t about grief ― or even about sorrow. It’s simpler than that. It’s about dread.
Dave is already in middle-stage MND, not early stage. We wasted the early stage, calling it long Covid, expecting him to recover while 50% of his lung capacity fell away. This beast only has three stages, and the battle, now, is to see if we can use “alternative” means to force it into remission. I say alternative means, because orthodox medicine has nothing to offer. Nothing. Before we knew it, in less than a month, we went from “When’s Covid going to quit?” to “You’re middle-stage of a disease for which there is no cure.
Yes, my mind is still reeling. Yes, I’m still caroming from wall to wall, hunting for solutions, looking for ways to just slow it down, while we wait out the years for a medical breakthrough. But it comes down to needing that PEG to make the distance. Without that, well … yeah.
And the second fear continues to haunt me, every moment: homelessness. It turns out that the charity, MND SA, can find suitable housing for us, but only till Dave leaves us for pastures greener and new roads to ride. Then, the widow is out the door, in an environment where there are no affordable rentals to be had, no social housing, no provision for people like myself. Fact: the fastest growing minority in this country is women over 55, living in cars.
Terror seizes me by the throat and squeezes. I’ll share a small secret here. All my life, I’ve had one real fear. For some people, it’s spiders, rats, snakes, heights, the dark, all of the above. For me, it’s always been the fear of being homeless, and particularly old and homeless. The feeling of waiting desperately for someone to come and rescue me is back. So is the knowledge that no one is going to come. I must figure this out myself.
No available housing, so ― motorhome? I can’t drive something the size of a truck! So, learn, damnit! Come on, woman, you’re not that old or frail. Get a grip. Your grandmother was born in a Romany caravan, circa 1899 (seriously), there’s Romany blood in your veins. Make sense of this. Do it! Learn!
No comments:
Post a Comment