My father passed away on 5/1/14 in Staten Island, NY. This is an essay I wrote in December of 2013. Rest in peace, pop.
My father is on his deathbed in a rehab center in Florida. He has been dying for a long time. His wife calls me from his room. “He’s not doing well” she says. He lies in the bed he is in right now with an infection in the bone of his right middle finger. It started as a case of gout and now, regardless of whether it was a result of his or his doctors’ actions or inactions after diagnosis, there is an infection in his bone.
“I’m doing everything they’re telling me to do. I’m trying. I really am.” my father says to me. “Dad, you don’t need to convince me that you’re trying. Either you are or you aren’t. Either it’s working or it’s not. This is between you, your body, your doctors and your God. There’s nothing I can do about any of it” is what I tell him. “I love you and support you, but this is your struggle, not mine. There is nothing I can do but tell you I love you and give you support but you are the only one who can fight this battle.” “I know, I know” he says. “But why me? My doctor didn’t recommend… my doctor didn’t…” “Dad, regardless of what’s gone on, this is where you are now, you’re getting the care you need and you need to be the one to fight because no one can do it for you”.
“I just want to live. I want to be healthy. I want to walk. My legs are as stiff as boards, Matthew, it’s hard to not be able to walk.”
It’s funny how life is. While you’re living it and in the moment, it’s easy to lose perspective, especially for a professionally diagnosed narcissist like my father. It’s easy for him to want to walk right now, as he’s confined to a wheelchair with ever-failing health. It’s easy for him to forget that for years, while he’s had the ability to get up and take a walk around the block, he’s instead chosen to sit on his couch and not take that walk. Given the choice, he’d always choose to be immobile and inactive. But now that that choice to be mobile and active has been taken from him, it’s all he wants and can think about. Well, that and food.
“It’s not suitable food for a human to eat” he tells me over the phone describing the meals he’s being served at the rehab center. “I mean, it’s pasta with a little bit of sauce. No salt, no flavor. The aide agrees. He says he’s going to go talk to the kitchen and get me something real. I mean, what’s the point of living if you can’t even enjoy your meal” And so I try to wrap my head around the contrary statements that are constantly pouring out of this man’s mouth. All he wants is a few more days, a few more months, a few more years. He has very simple needs. But he needs them to conform to the pleasures he seeks, so they’re really not all that simple. He can say until he’s blue in the face that he “just wants” but if he really “just wanted”, any tasteless combination of the right amounts of proteins and carbohydrates would be suffice until he regained his ability to stand and walk on his own and live independently.
I receive another phone call from my stepmother the next day. “He’s doing much better. Whatever you said to him seems to be working. He walked 3 steps, 2 times today with the walker, which may not sound like a lot, but it is.” And so it seems, my father is willing to fight to continue to live, to continue to maintain and improve the tiny bit of mobility he currently possesses. For now.
A’s current physical ailments began to take shape about 11 years ago. Starting with what must have been a stubbed toe or ingrown toenail, his foot became irritated. Sore. Bruised. A source of agitation and pain that he must have willfully been ignoring for an extended period of time. We don’t know exactly how long because A hid the injured foot from his wife by purposefully wearing socks all the time. By the time he finally informed her of the injury his big toe had turned black. HIS. BIG. TOE. HAD. TURNED. BLACK.
Not surprisingly, there was little to be done at that point. My father eventually resigned himself to the fact that he was losing half his foot in order to stop the spread of dead tissue and gangrene that threatened to continue to the take the whole foot and maybe eventually his whole leg. And so began the 1st in a long series of complications that arose from A’s inability to make changes, confront his Diabetes with a positive, proactive approach and to admit that he was the author of his own health and fate.
A few years later, my father came out to visit me in Seattle, not long after I’d made the move to the west coast. When I picked him up at the airport he didn’t seem to be doing very well. His skin color was slightly off and he seemed especially weak. “No, no, I’m fine” he’d said when I expressed concern about his seemingly failing health. We went about his visit here without doing much, a few meals here and there but he seemed very sick and his mobility was limited so we did no real tourist activities.
Not long after he returned to New York, I received a phone call from him. “It’s not good, Matthew. My kidney function is at 3%. They’re putting in a shunt, starting me on dialysis and I’m now on the kidney donation list in a few states. It may take a long time for them to find me a kidney match. Unless one of my children wanted children wanted to donate one…”. None of his children were donating a kidney. With a history of Diabetes on both sides of our family, the 3 of us felt that it was in our own current and future health’s best interests to keep both kidneys. But A is lucky. Luckier than he’ll ever be able to realize or admit. And so, after less than a year of dialysis to keep his body functioning and rid of toxins it couldn’t eliminate on its own, a kidney match was found from a 35-year-old stroke victim from Georgia.
To be continued…