Denial

Someone from the National Disability Insurance Scheme rang a couple of months ago. ‘Good news!’ she said. ‘Funding for your wheelchair has been approved!’

Well, great. Please forgive me for my mixed response to this news.

There are days when I notice myself casting envious looks at people in wheelchairs. Pushing my wheelie walker around is tiring and difficult, and now and again, especially on uneven ground, I’m at risk of toppling over. Imagine being able to sit down all day… and the chair will have a little detachable motor too, for ramps, or for long distances, or for whenever.

So I had the go-ahead. But still, I procrastinated. This development signaled further deterioration in my condition and I didn’t want to go there.

After a few weeks my occupational therapist (OT) emailed, asking why I hadn’t visited the wheelchair shop yet.

‘Please just let me be in denial a little longer,’ I said.

‘Of course,’ she replied. ‘I understand that the first wheelchair can be difficult.’

First wheelchair?!

*

Stem cell therapy re-entered my orbit twice last week. First my uncle emailed. Uncle Kerry used stem cells to treat leukaemia patients at St Vincent’s Hospital in Sydney in the 1980s, a real pioneer. He’s semi-retired now but stays on top of the literature, and he’d just read a preliminary report of a trial of Hematopoietic Stem Cell Transplantation (HSCT) for MS, also at St Vincent’s. And the story, in RACP Quarterly, mentioned good results for patients with secondary progressive MS—that’s my brand.

And a new woman joined my weekly neuro-rehab program at the hospital. Irene told me she’d gone to Moscow in 2014 to undergo HSCT, at a (crowd-funded) cost of tens of thousands (HSCT is still not a treatment option in Australia—unless you’re in a trial). She knew the risks—the procedure causes fatalities—but she’d been progressing fast, had young children that she couldn’t play with anymore, and was prepared to take a chance on it. The chance paid off—her condition stabilised, in fact improved a little, and she has not progressed in the five years since.

Stem cell therapy, which ‘reboots’ the immune system, is an ordeal. Doctors harvest some of your stem cells, from bone marrow or blood, and store them somewhere safe. Next they annihilate your immune system with chemotherapy or radiation. You’re left without any natural defences (or your hair) and can easily contract an infection. Even after they reinfuse your stem cells, and your immune system starts to regenerate, you have to stay in isolation in hospital for a few weeks.

I know all this. I also know that the best HSCT results have always been with young patients in the early stages of MS, like Irene (and further reading about the St Vincent’s trial turned out to confirm that). But you grab at straws when you have an incurable, degenerative condition. So I might let myself feel warm and fuzzy about going to Moscow for just a little bit longer.

*

In the meantime, back to the wheelchair. My wheelchair. My first wheelchair.

‘Think of it as forward planning, and, if need be, it can collect dust and cobwebs for now,’ said my OT.

I was thinking along the same lines. Because who knows how long the NDIS will last? I should grab the money and run … and just use the wheelchair on bad days. But that’s what I thought when I’d been using a walking stick for years and bought the walker … and in no time at all I was using the walker pretty much all the time. And the more I use the wheelchair, the more strength I’ll lose—especially core strength. That’s when they start talking about ‘transfers’. Chair to bed, chair to shower, chair to toilet and back. As in, how much assistance I need to get onto the toilet.

But despite all that, the Mechanic and I drove up to Canberra and spent most of a morning at the wheelchair shop. This particular wheelchair shop is run by a guy in a wheelchair, which made it easier—not having to explain everything. He measured me up, and asked a host of questions, many about issues I hadn’t even considered: the height of the back of the seat; whether or not the foot rests can be re-angled; many more settings and options that were, he assured me, very important. I do remember that there were sixteen colours available. I chose purple.

Then we stopped at one of those big sports barns and, in defiance, I bought a treadmill. I do a ten minute trudge on it most days. And will continue to do so, while I can.

11 thoughts on “Denial”

  1. Don’t know if it’s denial or strength Jen. Sounds like resilience to me. Stay defiant!
    I love the authenticity and vulnerability of your writing.
    Thank you ❤

  2. You bought a treadmill!! Wow I’m impressed that’s an investment that shows once again your unwavering willpower 😊

  3. Understand your position on denial of wheelchair purchase. It’s the belief that you can still do without that keeps you mobile and you do so well at maintaining yourself. Still, that Scott Morrison is going to take back NDIS funds, so he said, to balance his budget so the “in the store shed” for later on some time is probably a good choice, just in case. The treadmill sounds great.

    1. It’s mad and beautiful friends that keep my spirit up, Tony. BTW lots of great feedback about a certain poem — hoping it’s coming at you too. xxx

  4. 3 cheers for the treadmill and your defiance! Heart pangs for your wheelchairesque confrontations. 🥺 💓 💓💓

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