I wasn’t raised to be on disability. In fact, my military trained father would never allow us to sleep in – up by 5 a.m. on holidays or we’d miss the day – and constantly drilled into us that “idleness was the devil’s playground.” There was no lying around, watching soap operas or movies during the day, and we all worked before hitting the customary age of sixteen.
I lived according to Dad’s rules until I hit the brick wall of illness, and even then I didn’t let it take me down easily: kept going even when standing up became impossible (sweating, unable to breathe, and feeling about to pass out) and I’d find myself falling asleep while driving to and from work. I lost my voice, and found that even the simplest of tasks were suddenly incomprehensible for my brain, yet I pushed on.
When the doctor told me I would only get worse by working, I convinced myself I could still do it part-time. I think it was the day that I stood at the top of the stairs and realized that my legs would not carry me down that I finally surrendered – I could not see myself bumming it down the stairs at school.
After two years of being mostly home bound, my years of conditioning still gnaw at me. I should be able to do more bounces around my head like a ball on a tether. Especially now that I’m receiving new treatment.
Fake it till you make it! psycho-babble exerts, and that’s what I’ve been doing lately – acting as if I am better – ignoring symptoms and pushing through. I’ve been going to my daughter’s house and helping with the baby, preparing her meals, babysitting the three-and-a-half year old and then back for more support – just as I did for my first two granddaughters’ births.
It was after dinner last night that reality hit. Just as we were finishing the pasta dish I had ‘whipped up’ I felt my legs give out and knew that I was in trouble. I quietly excused myself and moved to the couch, putting my feet up. My legs muscles had locked and I couldn’t avoid walking stiffly across the room. When my daughter put the baby in my arms and offered to clean up, she couldn’t know that I no longer had the strength to hold the child. I set the small bundle beside me on the couch. I had promised to help put the other one to bed, but I knew I wasn’t going to make it. My daughter drove me home.
Once in bed, the ‘bites’ started. It’s a sensation I get in the nerve-endings that feels like being stung or bitten. Everything, from getting myself a drink of water, to changing for bed felt like an insurmountable task, and as I finally settled in to sleep, the pain hit – a whole body throbbing, coupled by the sensation of being stretched on a torture wheel – muscles torn and ripped – agonizing with each movement. I haven’t felt this much pain in years.
As with most nights, my sleep was not restorative, and I awoke this morning with the knowing that today will be a bed day, and little will be accomplished. Normally, such a realization brings me down, but today I am feeling more reflective. Did I really think that I could just positive attitude myself out of illness? That I could fake it till I made it?
Sometimes, despite our upbringing, despite our best intentions, life does not turn out the way we thought it would. Most times, actually. I was not raised to be on disability, yet here I am; it’s my life and I must deal with it.
Disability doesn’t mean disposable, or non-productive, or useless (a word I’ve applied too many times to my condition, thank you very much!). It just means other-abled. If I’d only stop fighting the process and surrender, chances are I’d find that this current life situation is opening doors I might have otherwise ignored – a kind of calling – as yet undefined, and equally full of possibility. Hope, I’ve decided, is the one thing I still have going for me.