Reflecting on a long journey of recovery (by Rachel Capps)
In her second guest blog post for Plan Partners, Rachel Capps reflects on how far she’s come, the people that have helped her along her journey, and how the NDIS makes it all possible.
'Today I stood without a wheelchair. Nothing behind me, nothing supporting me - nothing but myself, completely free. That may seem mundane and boring to you…after all, it’s something everyone does. But not so for me. Actually, it’s pretty freaking scary.
You see, five years ago, a catastrophic stroke nearly killed me. After the terror, after the coma, after the hallucinations, reality set in. I needed a ventilator, I couldn’t talk, my vision was warped and blurred to the point that I couldn’t make out anything in the ICU corridor and, if questioned, I felt I needed to lie to cover up my weakness.
While unconscious, a tube was shoved up my nose. It fed and watered me, until an incision to my stomach - known as a ‘peg’- was inserted for this job.
I couldn’t cough. Still can’t. Back then, Doctors cut a hole in my throat, for a trache: a special-functioning foot long tube that vacuumed the secretions in my lungs, which it did every half hour or so. After six months, a herd of doctors oversaw its removal, but during those six long months, my lungs constantly felt like they’d been ravaged.
I couldn’t move. The simple things, like going to the toilet, meant a catheter and more often than not, an enema. Blinking was a gruelling exercise that would rival an Olympic weightlifter’s job.
The stroke I suffered is known as a brainstem stroke. It doesn’t affect the ability to use my brain, or think, or remember, but it took my voice away, confused the pathways between my brain and muscles, and damaged my ability to swallow - all of which are still morbidly weak...five years later.
With all these issues, I didn’t envisage I’d ever stand again. And while I was eventually able to stand for significant amounts of time, it was always with a chair behind me - some form of security that I could fall back on. Until today, that is. And while I still had a forearm support frame, that moment was pretty priceless (If you’d like to see what it was like, search #rachelcapps on Instagram).
To who do I owe this achievement?
Firstly, and most importantly: me. I don’t say that to brag, but to show a mindset. Without grit and determination, I’d be an unmoveable lump confined to a bed. Using an air mattress on a hospital bed, on a catheter, using a bedpan, unable to talk and bored out of my mind, day in and day out. A shell. A baby. How do I know this? Because that’s where I was. That was me. Then.
Countless physiotherapists have helped me along my journey – and their support has been invaluable. But without the NDIS helping fund my physiotherapist fees for the past two years, it wouldn’t have been possible to visit places like Neuromoves, where I was finally able to stand again. But more than that, the NDIS funds my goal to become independent again. And if they’re good enough to do that, I’m going to respect that trust and try my hardest.
I may never walk again and if I do it will be hard, unsteady and awkward. It’ll never be what it once was. At present I manage with one carer, but with NDIS funding my physiotherapists, the goal is to manage with no carer in the distant future. Maybe the not-too-distant future – after all, what’s a few more years’ work when the worst is already behind me?
Not only does the NDIS fund my physiotherapists, they fund my speech therapists. To have the chance to talk to my husband, my kids, my carers, my friends and family? To anyone? That’s liberating.
I graduated from using my eye gaze on a letterboard to using an iPad. For years, that was the only way I communicated. Four long years.
I’m pleased to say, I’ve recently began to talk. No more iPad for me...most of the time at least. When I do talk, it’s strained, croaky and breathless and often so quiet people need to lean in close to hear my words. But I’ll take that. At my worst, when I can’t gain my breath and have to mouth words. This means everyone around me has become skilled lip readers. And considering where I was, that’s better than nothing.
Last year, I could only yell my kids’ names. It was then I took advantage of all the NDIS offered and now, after a year, I have a new, more ambitious goal: to be able to speak over the phone. I can’t even imagine what it will mean to own a phone again.
I hope to smash that goal.
One needs to appreciate where I’ve been to see how far I’ve come. And since embracing the full power of the NDIS, I’m able to go farther.
Dealing with the Government is never easy, but overall my experience with NDIS has the beginnings of a very productive partnership.'
Read Rachel's first blog 'How to make the NDIS work for you' here.
Watch our video with Rachel's story here.
Begin 2018 Rachel published her book 'Spades of Determination: A locked-in journey'