There’s a song lyric I once heard that every now and then pops into my head, “There’s nothing ever wrong, but nothing’s ever right – such a cruel contradiction.”
That quote sums up the emotional roller coaster I’ve been on the past week. Therapy was stopped, even after getting a doctor’s order for it. We are looking into a few solutions; one of which I hope will prove futile and get me the therapy I so desperately want. The sip-n-puff on my wheelchair is broke and needs to be repaired. For the time being I have lost the ability and independence I had to move myself around, there’s a whole slew of other issues I won’t bore you with, except for the fact that some days it’s tough for me to stay focused on the positive.
With that being said things aren’t getting worse. I seem to have more better days than poor days. So that’s good, right? which leads me back to the quote “nothing is wrong but nothing is right”. I am fortunate to be where I am. I have a very strong support network, tons of prayers coming my way and I feel I am getting stronger every day- a far cry from where all the “experts” thought I would be last July. However the biggest challenge I still face is learning how to define myself. I still focus on my physical being, I still define myself as not being able to physically perform everyday tasks the same way I used to. Part of me accepts the fact that I should not let the physical define me, my mind is sharp, my personality is still there (for the most part) and I still like to dream big. The other part though still stares at my arms and legs the way a young kid looks at a small animal through the pet store glass window. It’s right there in front of you, you can imagine what it feels like, but you just can’t seem to grab it and make it yours. These are still my legs and arms yet they no longer listen to me. This will change one day – I believe that and work towards that – just wish I knew when that day was.
I’m still partaking in the brain study at the VA. I enjoy it; in addition to the study it’s great to just get out for a few hours. I am going to a baseball game Wednesday evening with Kristy and one of her friends. In addition to looking forward to the game, a beer and the company, I am looking forward most I think to not being here. Again, it’s that “nothing’s ever wrong, but nothing’s ever right” thing. I can’t wait for the day my family has our own vehicle and I can come and go as I please. However, I also need to get my real wheelchair so we can make sure everything fits properly.
To sum it all up, I’m stir crazy. I want to move forward – literally and figuratively. I want to break out of the bonds of “institutional living”. No more hospitals, no more skilled nursing facilities – I want my independence, I want a different routine. I want to continue to move towards what seems normal. I want to prove all the naysayers wrong and show them what I can do and not listen to them telling me what I can’t or won’t do. There’s that cruel contradiction again, I want to work towards getting better yet find myself paralyzed by my paralysis. Enough is enough. Some things are out of my control but some things are in my control – and its the latter that I need to embrace.
My Dad always tells me, “Everything passes. Every day’s a good day but some days are better days.” Now that’s a better
saying to allow to pop into my head.
I want to end with a very special thank you to some very special people (you know who you are), who purchased an EasyStand for me and with it. hopefully, a bit of independence.
As always, thank you for your support and prayers. Keep them coming.
Scott