I was faced recently with the reality of how much one small thing can unfurl my entire days plans.
Today began as normal; I woke after a good night’s sleep and my support worker peeled off my nightly Glad Wrap eye covering, only for us to discover that my eye was quite red and instantly, my day changed.
My support worker headed to the pharmacy to collect more interim eye ointment while I scrambled to rearrange my day. The eye clinic was further away because my specialist doesn’t work locally on Tuesdays. Suddenly, every work meeting needed to be shifted around a new appointment slot.
On top of that, I’ve had a shoulder injury which means yoga isn’t currently an option for movement. Swimming would be a good alternative, except swimming isn’t ideal for my eye. One solution creates another problem and it can feel like a vicious circle.
By 2pm, I realised I hadn’t moved my body all day and instead, moved an entire day’s worth of appointments instead.
The irony isn’t lost on me. So much energy can go into managing health that there is little left for actually living. When I haven’t been able to exercise, I feel the effects physically, emotionally, and mentally. What strikes me most, though, is the ripple effect.
Recovery isn’t just about the medical issue in front of you, it’s a chain reaction. One red eye can have a domino effect on everything else needing to move or change.
The ripple effect is difficult to see when I have funded supports helping me absorb some of that impact. The truth is that many of these pivots can happen because I currently have the support around me. My support worker can collect medication, get me to appointments and step in when the day changes unexpectedly.
But lately, I’ve found myself thinking about what happens if those supports are reduced.
The reality of disability is that it remains ever-changing. Bodies don’t politely schedule complications in advance and if funded support becomes unavailable, those dominos fall onto someone else.
Instead of a support worker changing their plans, it becomes a friend, family member or someone who loves me enough to help at short notice. because there is no alternative. And this becomes a struggle to contemplate.
I write in my book:
The longer I spent living back at home, the more I became aware of the huge sacrifice my parents had to make to their lifestyle to
accommodate me. It was comforting that they were so willing to do this, but also terrifying. Dad had stopped work, they’d modified their home, and their social routine had completely changed. If one went out, the other stayed home to ‘babysit’ me.
Reinventing Emma, page 157-8
I know the cost of relying on goodwill. I know that stepping into care for me has a ripple effect on their lives as well.
Today did not require too much change and support, but it reminded me that even in those seemingly small chain of events, everything is interconnected.
I can’t fathom how difficult it is for so many who have no support or funding!
Recovery is rarely a straight line, it is a series of dominoes. And some days they fall in your favour, and other days they don’t. The great challenge is when they do fall, trying to figure out how others might fall as well.