I met Ryan when I went to my father figure’s memorial service. He was one of his son’s best friends. He introduced us, but I was already acquainted. Ryan was such a friendly person in spite of the hand he had been dealt. I had arrived feeling out of place, unsure of how to handle breaking the ice at such an event. I remember uttering something to myself under my breath about my quiet frustration and he chuckled and replied. In an instant, I remembered I belonged and felt at ease.
When I met Ryan he had just woken up from a coma. He had Lupus nephritis and it went undiagnosed for too long. He worked construction straight out of high school as he wasn’t born with a silver spoon, and it went undetected until one day he had a seizure. By then, his kidneys, his heart, and his lungs were all severely impacted. He needed heart surgery, and at 26, started his life as a dialysis patient with 10-5% of his kidneys still functional. After his health issues picked up, he became homeless and without a valid address, he couldn’t sign up for the transplant list.
Ryan told me about all of this at the service. He told me about how he lost control and much of his dexterity in his left hand. How he had to retrain his voice to even talk. How his passion in life is music, and the need to create pushed him to practice even when all he could muster were low vibrations. I remember how inspired and amazed I felt by his tenacity and will to not let go of his dreams, even then.
We became close. He would check in on me and offer advice when times were tough. He told me about how his seizure was partially triggered by mold and that the hotel he was kept at by social services was innundated with it. He kept having seizures, and his medical taxi kept getting the wrong appointment times for his dialysis. Concerned and frustrated for him, I had him stay with me to see if the hospital in my area was any better.
This started the chapter where I became deeply involved with his medical care and learned how abysmal it was. I spoke with his doctors, I argued for his care. I pushed and strategized to figure out ways to improve his care overall. I learned how his dialysis center didn’t properly care for his port. How they didn’t even give him the proper materials to tend to it himself at home, so it often got irritated and inflamed. He had an enormously distended belly, and we kept hearing “liver cirossis” being thrown around as an assumption despite Ryan never being diagnosed nor informed of any liver damage. It was his new dialysis tech who explained to us that for his stomach to be the way it was, he had to have liver damage. It was called an ascites, and it had to be drained monthly or it could go septic. They drained it maybe every 3-4 months, which shocked the technician.
Despite the better care he recieved, eventually his insurance had enough of the extended stay in a hospital in another state and he had to go back…so he went back and forth. One time his dialysis clinic used him as an example for new techs and changed the settings for his dialysis, and didn’t change it back. He had a seizure which sent him to the hospital, then had another when he was discharged because they still didn’t change the settings. Whenever he’d visit, his condition would decline at alarming rates and our plans to walk into the ER became calling an ambulance. I was told he was near death or could’ve died more times than I can count. Despite being documented as a dialysis patient on blood thinners, he was used to being treated as an IV drug user and felt he needed to delay dialysis to be seen and taken seriously. Thing is, as it turned out, he didn’t know how bad his health already was due to how haphazardly he’d been treated… he was constantly in a state where the hospital didn’t want to discharge him.
One time he was admitted for a week and things were looking good. I was checking in on him daily. As I was arriving, I saw nurses pouring into his room, bloody foot prints down the hall. He was being intubated because he seized and was put in a voluntary coma. I had to suddenly figure out how to reach out to his family. Thankfully, he pulled through.
The last time I spoke to Ryan, he had heart surgery for the 2nd time, his port removed, lined up for a transplant, and his ruined fistula was hopeful again. We stopped speaking because he had fallen had for me and we were not compatible in that way. He ultimately chose distance to be able to work through it.
A few weeks ago I got a call from his best friend that Ryan passed away.
He had a seizure after his Thanksgiving meal with his family and hit his head badly in the bathroom. He lost the ability to speak, he could barely move his left hand. He couldn’t sing anymore…he had such a lovely deep, brassy and soulful voice. One you just wanted to close your eyes and listen to. He couldn’t play his base, or dance his fingers along the keys of a piano. Stuck, unable to communicate in place he has a deeply seated fear of, Ryan’s documented mental illness became exacerbated and he tore out his own port. After that, his medical team decided they weren’t putting it back and Ryan died from renal failure because he couldn’t receive dialysis.
We don’t know if he meant to pull it out and wanted to let go. It’s possible that he did. He both wanted to live at all costs, while never wanting to live a life where he couldn’t make music. However, he wasn’t mentally sound and when you’re in need of dialysis it can affect your brain. I don’t understand why his care team didn’t turn to his mother, or give someone power of attorney over him like they did with me. This was a call they made alone.
I’m so sorry Ryan. You deserved so much more. I wish you were able to actually live the life you wanted. I hate that you died in your least favorite place, in the way you feared the most. I’ll do my best to live for us both.