As I was doing what most would consider to be routine chores today, I was thinking about how independence comes in many forms. There’s a difference between wanting someone to clean your house and needing someone to do so. Since my car accident in 2002, I’ve needed someone to clean my apartment. Every time I have to find a new PCA, I try my best to do things on my own, but until recently it’s been to no avail. After about three weeks, I’m usually so overwhelmed by not being able to be independent that I break down and hire a new PCA. Since April however, I’ve been able to maintain my apartment on my own. This is a major accomplishment and sense of independence for me!
When I moved back to a one bedroom about a year ago, I knew I was better. When I last lived in a one bedroom apartment in 2010, I had about 25 hours per week of PCA assistance. Life had been getting progressively worse in 2010. After lots of consideration, I moved into a two bedroom apartment and got a live-in PCA. 2013 saw such a change in my health thanks to Baclofen that I was able to move back to a one bedroom in June 2014. From 25 hours per week (which included personal care like helping me wash my hair and back due to muscle spasms, etc.) until 2010 to a live-in PCA (with me doing my own personal care) until 2014 to having a PCA just three hours per week (to do the really painful things like changing linen, laundry, vacuuming, etc.) until April 2015 to doing everything on my own has been quite a change. Using a couple of assistive devices, like a wedge to prop up the corner of the mattress so I can change my linens easier or a little collapsible camping stool so I don’t have to bend and twist to do laundry, I’m achieving a sense of independence that neither I nor my medical providers imagined possible.
To be able to do things when and how I want them done is a freedom and a sense of independence most people take for granted. It’s so new for me however that I’m actually documenting what I do and when I do it. You can’t imagine how nice it is to document accomplishments and not just symptoms. I knew I was getting better at a glacial pace, but the last couple of months I’ve seen just how much better I am, even when day to day I might have more pain or fatigue (especially the last month). It takes me a lot longer than three hours to do what the PCA did, probably more like 3×3 hours, but I’m doing it. It’s not perfect, it’s not fast, but it’s mine. And that’s what I’m celebrating this Independence Day.