Before having my stroke last year,at my core, I identified as an unafraid, strong, independent woman.
My strength carried me through the 6 plus months I spent being an impatient patient in hospital and for the past 6 months out in the world trying to come to terms with all of the new ways I now must interact in that same world. Then, you realize that the old identity no longer fits, you try to find the right word to describe who you are now. Being a button pushing rebel, I like to use controversial words to describe my new ailment. Words like brain damaged or crippled, because they get a rise out of people, but moreover, they are correct. I’ve been saying I’m in recovery, which, while technically true sends the wrong message. People constantly asking me if I’m feeling better, or how much longer do I think I’ll need the wheelchair, as if recovery means days or weeks as opposed to months or, in my case likely many years I’m at the point now where I feel the need to be more honest with my language, if only so I don’t have to keep explaining that people need to get used to the wheelchair being in my picture. It’s only now that I realize that I’ve been leading people on with my own hopeful attitude towards the possibility of a full recovery, which is getting less likely by the day. Just try bringing that up with anyone who cares about me,and it becomes all anecdotes and platitudes about not losing hope.
Hope. The word has become to mean what the word god means to me, nothing more than a waste of time. Sure it’s lovely to daydream about some distant day when I might walk and dance again, but it’s just feeding into self delusion, with no real reason to think a full recovery is even possible. No doctor has ever even used the word probable in the same sentence as full recovery, in my case. At best I hear the word possible surrounded by air quotes and written in italics. I don’t need hope to continue trying to improve my mobility. I do the work because that’s the only thing I can do. I now have to say that I can only get as mobile as my damaged brain will allow. What that may look like is anyone’s guess.
Throughout this process, my strength has been sapped almost bone dry, I’ve become more fearful of the world around me and as of a couple of days ago, I am entirety dependent on my husband. I finally got the call I’d been dreading I might get. The federal government turned down my disability claim because I’ve worked one less year than they need over the past 6 years. So, now,once the last 1600 dollars of my savings has been spent on my cell service, we will be living entirely on one income! In the past we would help each other through the rough spots, from here on, I can no longer be of financial help or physical help. What with my emotions on a bit of a narrow ledge the emotional support is hit and miss, though I do try to think of my husband’s needs at least once a day. Is it any wonder I’m searching for a new identity?
The words that most resonate now are an honest, open, loving terrified and brave woman who is disabled
Ugh. I’m so annoyed that the Feds turned down your disability claim!
And though this is only somewhat related, I find identity tied to our physical bodies so weird. I once had a strange sensation because I bought peddle extenders for a car I had (I’m not that short, the car was just weird for me) & I also ended up putting the seat up high and sitting on a cushion (long story). It gave me the sensation of being a tall person yet I had always identified as a short person. It freaked me out a lot. This superficial story, is evidence that on top of what you are going through with all that comes with a disability, you’re going through complicated crises that you probably don’t even realize because they are drowned out by the screams of all that is so much more urgent in your life!