Disabled Chronicles, No. 4
I spent the better part of that day saying his name and then uttering an angry curse right after. Or vice versa – which ever came to mind first: the curse or the thought of him.
I lamented that, now who was I going to be buying shampoo or mens’ summer shorts for?… after I had spent the night prior planning out my next months’ shopping list. The empty feeling whistled through me much like how I felt after my first for real for real relationship went up in smoke.
H… I’d first known about him through my Aide. She who often cares for the sick of us who are more poor than anyone can ever imagine. She came, helping me like she does and the news of H spilled forth in a sorrowful avalanche:
H, eldest, has Muscular Dystrophy like you, but he is autistic and has high blood pressure and heart problems. But his younger brother and his mother have Muscular Dystrophy too! Sandra! He is in such bad shape! He has no soap, no clothes, no bedsheets… They have nothing – their money is just enough to pay their housing! How is the agency expecting me to care for him? With what? You gotta help me with this one…
No more… I told her that I didn’t need to hear any more. She maybe thought my silence was hard-heartedness… or that I couldn’t or wouldn’t help this time. As if I’ve ever said no. I just needed the spaces between her breath-fulls of information so I could think.
Her distress only accentuated the urgency. As she removed my shirt and pulled my arms through the sleeves of my pajamas, I hung my head and bit my lip. There were always those patients who she ran across that would find supplies from my own modest stash flowing to them. Empty detergent bottles full of water because they couldn’t afford to pay their bill so their water got cut. Ramen because they didn’t have food. A bar of soap. A bath towel. Socks. I always told her not to tell them who or why. But I would always get a call some weeks later or a text message thanking me. I never did it for the thanks, but to be a stranger, like so many had been to me and my family, who saw need and helped because they could.
And so, I began asking pointed questions. How old is H? Does he have a wheelchair? How is the Mom? The Younger Brother? How are they living? What does H, specifically need? I listened with intent, directing her on what to tell the Mom so that she can ask for more help for H. And I began making my mental shopping list, knowing I would be robbing my Peter to pay their Paul and I had no hesitation. This was a small chance to make an amends to a situation I did not handle well the first time with my own Older Brother.
So I rolled up my sleeves, tightened my proverbial belt and for two years I sent a fleet of supplies to H and his brother, all the while asking forgiveness and grace from my own Older Brother’s spirit, for all the arrogance I had as a young adult in an impossible situation. I enlisted Nephew, I pilfered my own coffers and connections to make sure H was living as comfortable as he could in his situation.
I’m sorry… under my breath and with every box of supplies I would commandeer – I’m sorry Brother…
With this steady stream of socks and shirts and bed pads and soap and advice on how to make the system work in his favor, H began to flourish. He gained weight, his skin improved, his Mom got him a hair cut and beard trim… my Aide said he was looking and doing so good.
And then three weeks ago, I got word that H had bed sores. And if there is anything anyone needs to know about being disabled and having bedsores, it is that they can be a death knell. My outrage at hearing about this from my Aide stirred anger in me she had yet seen. She had been off of H’s case for some months and the negligence of the new aide on his case showed. I sent all my current skin care supplies and gave her off the book instructions on how to get those sores dry and on their way to closing, fast.
But I worried, that her news of these sores had been too long in getting to me, that the other aide had not spoken up about them to the right people sooner. So now that she was working with him again, I asked about him everyday. I had her tell me the progress of the sores and I would nod, approval. I would instruct her on how to talk to him, how she needed to put him sit up in his chair for a few hours a day so he won’t develop new sores. I had hope, that this young man I had never laid eyes on save in the pictures she took with the clothes I bought or had my Nephew donate, would be good.
And then, four days ago… she told me, H didn’t make it. They had sent the other aide back, after the sores started getting better and she found his body, already cold.
My Sister was the second person in the house I told, after Nephew, who I hadn’t shown and haven’t done a good job explaining the idea of loss to and who was shocked but shrugged it off like any un-touched by close trauma teen would.
But my Sister, after remembering how much Nephew and I had done to help H and his brother and understanding what the implications of H’s passing meant to me, gave me her condolences, like only those well versed in loss do.
And I cried. I cried because the death of someone with any of the Muscular Dystrophies hits especially close. I cried for my own Older Brother who passed from it at the same age of 29. I cried for the friends I know who have passed from it.
I cried because as much as we did, it wasn’t enough, because our help was too late, because H was failed by the many hands sent to help him, I cried because it wasn’t fair. I cried for myself…
After my Sister hugged me and dried my face, I stopped crying and got angry that H didn’t let me buy him new shorts for the summer, or socks come the fall. I got angry with him throughout the day for ruining my plans of getting him a plushy pillow I discovered that would prevent him from getting sores on his ears. I got angry with him because I had no intentions of crying that day or of feeling so bad.
And as the anger wore off during the miles of errands I ran with Nephew, I let the sadness flood in, quietly make its way through, then out before I thanked his spirit for gracing us with its presence. I wished him G-dspeed on his way.
It doesn’t get easier. It doesn’t even f*&kin get better. It just is and we just deal.