Part One -Prologue
Multiple Disabilities. Ugh. Multiple INVISIBLE disabilities.
Multiple Disabilities is the name of the skeleton in my closet, that thing ones shoves back into the dark. Not forgotten, never that, it reeks of dank despair. It’s a cloak that should you wrap it round your shoulders it will weight down every step you dare try to take.
Multiple disability is my bugaboo, my ‘do not say it’s name’ demon. It’s the monkey that gets ever heavier on my back if I feed it. Yet it grows mean and nasty if I ignore it. It will not be ignored.
Disability is like that. It’s starting the race with a huge (invisible) weight on your back while all the racers around you have just themselves to carry forward.
Society praises those who have visible disabilities when they carry on anyway and lauds them when they reach even higher.
I both don’t want to call attention to my challenges because that is feeding them, but don’t want to pretend I’m starting the race unencumbered. The expectations can be crushing.
Day 5 without electricity after Hurricane Ida dawned.
I can’t say that what I did while I tried to find a cooler spot as I lay naked on the sheets was sleep, it was more a desperate snooze. The kind where you wake up realizing your head was at an angle as you drooled on your shoulder because you fell asleep sitting up. Only repeat that through a sweltering dark night with the drone and sometimes startling falter of generators in the otherwise silent neighborhood.
Alok said he waited for the outside temp to drop below what our house thermostat says. (Battery in it apparently) to open the windows. It never did.
Waking up has forever been one of the most difficult times of the day.
I can not find the words to explain how hurt, shamed and unseen I feel when people believe that it’s only a matter of attitude how you feel when you wake up. I think perhaps 5 times in my adult life I’ve woken rested and not in disturbing levels of pain. (One after a colonoscopy). Sometimes I wish I had the gift to give someone else my perspective; then I realize that would be cruel because they have no inkling how to manage.
When you wake up not rested and in pain, the first instinct is to try to rest some more. That doesn’t work with psoriatic arthritis. Not moving, will cause the pain to increase. My sleepy brain doesn’t know that, add a migraine and reason doesn’t happen.
Getting up to start my day is the first major obstacle every morning. Because I am resigned to accepting that I will wake up not feeling rested, and most days I will wake up in some level of pain, I get up anyway.
My father had this aphorism, I don’t know if it was his catholic asceticism that somehow made sense to him to punish himself for having feelings, but apparently this aphorism seem to help him and he thought it would help others.
“I felt sad because I had no shoes until I saw a man with no feet”
Feeling bad for someone without feet, doesn’t change the hardship of having no shoes, and so on. Being grateful for what we do have, does lift us up because it shifts our focus. You don’t get there via the shame highway.
It’s well enough that people comprehend that love isn’t finite. The more you love, the more capacity you have to love. We can validate our own sadness and pain simultaneously with thoughts and concern for others.
Ironically, the more we tend to our own needs, the more capacity we have to tend to others. Our unmet needs weight us down like that monkey on my back.
My intent was to set the stage, that sheds light on why my accomplishments are more meaningful to me. I had to fight my way to even get to the starting line. I’m moving slowly, but that is still progress.
What I did today after getting out of bed is what I typically share about coping with adversity on top of multiple disability. That’s the story- next post.