roy crosse artist: closer to the end than the middle
My friend Roy died on Thursday. He acknowledged he was closer to the end than the middle, something we know but have a hard time acknowledging. Some of you have read my posts about him or my caregiving posts that were informed by conversations with or about him. I knew Roy for about 20 years. He was the first true artist I knew which is to say, I have known many who called themselves artists over the past 40 years. But Roy was a practicing artist and a creative soul. His idea of how the art world worked was not externally anchored. It was not about being discovered or “necessarily” being written about by the NY Times Arts Editor. He understood that sometimes being a true artist is not intrinsically tied to being recognized externally as one. And he worked. He always worked. He made furniture. He wrote short stories. He created sculpture, works on paper, prints. He grew gardens, He sewed. He wrote children’s books. He wrote music. He had a huge life of the mind, an imagination that soared and he worked in the physical realm. Oh and could he cook. That Trinidadian brother could cook!
He was also a great friend. I will miss his friendship. He took this picture at the John Hopkins Hospice Wing. He cracked me up that day talking about how good he looked in his diaper. They had finally gotten his cocktail straight and he was feeling good.
Today I finally had the courage to read the last episode in his Cancer Chronicles. I am sharing his unedited Facebook post written on January 29, 2014 with you because some of you had started asking, “How’s your friend?” He’d get a kick out of us getting a kick out of him . roycrosse artist on his Harley riding into the sunset. Burn Baby Burn.
Latest Episode – Cancer Chronicles
The Last Hooray ( dressing up) roycrosse.
We finally come around to having that talk about looks and looking good. How I look throughout this ordeal has taken up considerable attention sometimes one could not be sure I was looking bad because of it, or, looking good in spite of it, but there was always talk.
For most of us looking good is a reflection of our personal universe. How you stack-up against the world on any given day is entirely random, consequently, if we feel like crap we tend to look it: if you think I am kidding try looking at your sexy self when you are constipated.
It is true that we can influence our day by taking in hand those matters of which we have some power and dressing up or down can be one of them.
Friends kept saying ” you look good” and I did, or, I do, but I did not pay attention to the undercurrent, it was a distracter; a way of acknowledging my discomfort without speaking directly to it.
I suspect most people just do it unconsciously, but I think there is a very real and conscious stream running parallel to all this circumstantial activity. Regardless, given my present situation hard evidence dictates that I start planning for my demise, or rather put more gently planning for end of life. To be fair we are talking about evidence from from C scans and MRI done only seven days before this writing and they are quite bad. The sacrum is literally falling apart and all other tumors have grown into impressive sites. YOU can see them from afar.
like a million dollars.
“ You are closer to the end than the middle”. ..says doctor Rita. That would be the case even without cancer. I have passed the half way mark. Hence, with cancer at the center of the life, conversation is centered on end of life. “what” do I want most and so on. Anyone who has been around me for more than a week can answer the question: it’s about my work. I have several projects on the table that must be finished period.
A bold statement for a man in my position and so it must be. But, I have a good life and good reason to believe it is possible, with some of the most outrageous, lovable, crazy loving and generous friends anyone can have. And they were not hatched out of some scientific aberration cultivated in a green house, or, the residue of BLU-RAY technology: they are all natural right out of the womb of a crusty mother earth. It’s a tough sell, tough to leave “all that.” Tough to leave the wealth of goodness and love and grace that have bestowed me, it borders on shameful if not a sin, but what if I had nothing to leave behind…nothing to leave. Dead is dead…what can a person want out of death.
Death is an end in itself it resolves nothing. Hollywood leads us astray with the “death bed confessions”, but it’s rather the exception than the rule.
But the question begs answers that are not yet satisfying to questioners. I suspect what questioners want to hear is a planned funeral, or details of some kind of ritual or ceremony to cover the
Situation. But all I have so far is:
“Burn baby burn”
Ashes can be divided between my garden and the Atlantic Ocean. I am liking the idea of a small musical tribute with the roycrosse Quartet what else can a man ask for at death’s bed.
I suppose the least one can do after all is settled is look good. And if you think about it, it makes sense. The only thing on can do dead is to be more dead than you were the morning before. You can look bad dead or you can look good dead but you are still dead.
Now, I am not talking about looking- good for the family or any coffin watching ritual you can conjure up in the mind’s eye. No. This is for me. No coffin. NO little glass window so friends and not “so-friends” can come for a final peel…he did not look so good his last days…do you think…or, he still looks good…he is the sexiest dead man in Baltimore.
Dress me up: in my good riding booths jacket and wool-pants, from the GOODWILL store and what ever else is done to the body then burn me up.
“Burn baby burn”.
In the meantime, I am under Hospice Care and have been since late November. What a difference. At the wonderful facility: the Burburg Pavilion at Hopkins down town Baltimore campus.
This intervention became necessary when I exceeded my own capacity to bear pain and suffering. By the time I was admitted I was on my knees. I could not sit upright or stand, lie on my back or walk properly. Doctors and a Palliative professional had to sit on the floor to interview me.
First move was to put me on a cocktail of morphine and other supplementary painkillers, but relief was still a few days away. It became clear no concoction relying on morphine was going to work. Next move was to literally design/invent a new medicine just for me. Hopkins lab and a doctor L and doctor S in particular worked feverishly to make this happen. Our first trial eased the pain somewhat but I still could not walk or support myself easily. A second cocktail with the main ingredients: Fentanyl Citrate, Bupivacaine HCI and sodium chloride succeeded.
Finally a breakthrough it had to happen. I could not know then but it had to happen, what else could we expect I was just going to up and die because I was in pain. But it does happen…people up and die for no good reason and in the absence of reason we say it’s “God’s Will:
For close to a decade I have lived with pain in all its mutations running the full scale of emotions with its extravagant varieties big and small. I have coaxed it, try to soothe it, lay with on cold hard nights, stand up to it, be-friend it, try to live with it, but it was not going away. Having experimented with what I thought the world had to offer and finding little or no relief, I, was prepared to live with it for the remainder of my days on this good earth.
Then it happened. The pain exceeded every resistance I could offer up and so I was a candidate for palliative care. After some back and forth with my own understanding, or, lack there of, I was admitted to the Burg Pavilion Palliative care at Hopkins, within two days an authentic one-of-a-kind compound was made up specially for me. No ordinary mix off the shelf would do. Experimentation with pharmaceutical cocktails succeeded on the second try…SUCCESS. I was able to stand on my feet for the first time in close to a decade and say no pain, like riding a bicycle for the first time without holding on to the handle bars, “Look Ma no hands”.
The truth is – making the compound available was no easy matter. Hopkins hatched the recipe and made the fist batch but could not legally supply my hospice provider with a supply. A lab was found in Florida, the only one with the capacity to fabricate the compound and supply. This mean starting from scratch with Hopkins recipe then testing to for bacteria and quality control issues, and it is also a control substances again coming with its own legal baggage. At any rate, all those issues have been resolved and I have a guaranteed supply from Florida with weekly deliveries.
I have been fitted a tunnel now wear an IV which enters by back at the sacrum and feed medicine to the area constantly. The medicine is in a fanny pack that I wear 24 / 7 with a pump and a medicine bag and when I feel pain I press the button and zap some medicine in the area of the pain.
At Hopkins I was called miracle man bigger than life. I came back. I was close to death I am sure. But the care and attention I received and the miracle compound made all the difference I now have a bit more energy; the absence of pain make any day a good one.