My disability hearing is Monday morning. It feels more like a sentence imposed upon me than anything else. I picture the judge as a monster from a Stephen King novel, his gavel an instrument of punishment posed to administer my lashings. And what was my crime, you ask? I’m not sure, really. Maybe it was asking for help, wasting the judge’s time or even getting sick in the first place.
Is this how disability felt for you?
I didn’t want to talk about this. I wanted to hide it like my dirty little secret, like the failure, I guess I still believed it was deep down somewhere. But then I went to the cancer center yesterday for my monthly IVIG treatment. That changed my mind.
There’s an older man present every time I come. I don’t know his name or the depth of his ailments, but I do know he is very sick. And alone. He’s driven in from a local senior care center and arrives in a wheelchair. He’s extremely hard of hearing so he and his caregiver scream everything back and forth to one another.
Yesterday, his caregiver wheeled him over to the cancer center chair she’d chosen, pulled out a support belt and prepared to transfer him.
“Move out of the way, I can do it myself!” he shouted.
“Are you sure? By yourself?” the woman asked.
“Yes, now move, I said,” the man yelled back.
Three times he gathered all of his strength and attempted to hurl himself from one chair to another. And finally, a stream of profanity, quite impressive for a man his age and then, “Well, dammit, I thought I could do it.”
His caretaker laughed, rubbed his shoulder and prepared once again to transfer him. I hate to admit I laughed too. Not at him, but with him.
Because, dammit, I thought I could do it too.
And we’re not just talking about switching chairs anymore. As I watched him try with all of his might, his face filled first with determination and then disillusionment, I saw myself.
Why are we so hard on ourselves, I wondered?
But I knew the answer. I knew it was because somewhere in the back of our minds we remember we were once able to move from one chair to another by ourselves. And the truth is we haven’t yet adjusted to the fact it now takes multiple people to do the job.
And so here’s me. I used to be able to go to work like many of you. I once got up in the morning, put on pretty clothes and make-up and went out into the world, in hopes of leaving my mark of good. I thought I could still do it. I tried with all my might. But no.
A lovely friend of mine, another chronic illness warrior advised me not to worry about this particular part of my journey. She’s been on disability for almost 20 years now. She said, “I don’t worry about it too much, I’m just so thankful to live in a country where it’s a possibility instead of being thrown out into the street.”
I think this is like saying, “I don’t worry too much about not moving myself from one chair to the next. I’m just so thankful for the people who are willing to help me get there.” And I want to get there. To this place of acceptance and understanding, to this place of peace and gratitude.
So, I’m raising my glass: here’s to realizing we can’t do it all on our own, even when we thought we surely could. Here’s to continuing to let go and look forward. Here’s to celebrating the people who rub our shoulders and laugh with us when in disillusionment we say, “Dammit, I thought I could do it by myself.” Here’s to the truth we all have to face: doing it by ourselves isn’t all it’s cracked up to be, anyway.
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