Im sorry I haven’t posted in a while. Things have been difficult physically. The body is a long way from the condition it’ll be in if I let this go on, but I’m done now. There is too little joy left and I’ve always said that quality of life would be my indicator of when it is time to die peacefully.
I will stop eating and drinking Monday, in a hospice program that lets me end my life (by starvation and thirst) without calling it suicide. We don’t know how long the process will take but my hunch is up to 2 weeks, with the last of that time in some level of sleep.
All of you should know I’ve been fighting to get into hospice because my diagnosis of “probable PSP,” a condition that can’t be confirmed without an autopsy, isn’t solid enough for local hospice admission, even with all my symptoms. In fact I’m not yet admitted. I may be required to do this on my own for as many as 5 days before they will admit me. I’m being reevaluated Tuesday. I’m angry about our (lack of) a right to die as we wish in this country, but I’m trying let that anger go — I’ve got other things to spend my time on.
I’m so sorry for the pain my death causes, but there’s a trainload of increasingly awful symptoms barreling down the track towards me.
What I know is this disorder has already taken away my ability to stand unassisted, to take a walk in the woods, to meditate, to taste Girl Scout thin mint cookies without tasting a phantom splash of Formula 409 too, to cook, to create art, to fix leaky pipes or paint a wall with my own hands, to travel, to sing, to eat a great rare steak without it first being cut into small pieces, to chew, to swallow without choking, to focus clearly through both eyes at the same time, to open my eyes outside on bright sunny days, to know when I need to pee and to get out of bed without a struggle. My lips are numb and my tongue has felt badly scorched, as if I drank a whole pot of very hot tea, for almost a year. I can’t lift even a bed pillow anymore. The bed MUST be made with the ends of the flat sheet and the blanket not laying on top of the pillows because I can’t lift them to get in. Last week the end of my thumb went numb, and I probably will lose the use of the whole hand if I hang around. The one finger I can still type with is on that hand.
I expect to lose my ability to clearly speak at all in the next 4-6 weeks.
Eventually I’ll lose everything.
I live in assisted living here at Canterfield in Florida and I can hear many of you saying “Just accept help.” I have and do so increasingly. They have kept me safe and entertained and made my meals for me for several months, but measuring the necessity of increasing daily help against the decreasing joy is no longer adding up.
Intellectually my spirit, the essential Kyle, is still mostly in here, trapped inside the failing body. I think of spirit and body as distinct and separate pieces of me. I still talk at the same rate and tone I used to… in my head.I dream of walking and when I wake up in the morning, before I’m really awake, I’m ready to jump up and start my day.
It’s time to let go. I had what’s called an “end of life” dream in hospice-speak, and I know I’ll have all my pieces and parts working just fine when I get to the next stop on this journey.
My incredible daughter Claire, my sisters, my brother, my cousin, nieces, nephews, the babies here now and those to come, the domino dames, the lunch table ladies, my ex, my co-journeyers with such loving support on this site and my healthcare providers, I thank you for walking this journey with me. It hasn’t gone perfectly but nothing ever does, and I’m grateful to you all. Claire, I love you thiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiis big.
My cremains (the leftovers, I call them) are going to be sent up 100,000 feet over the U.K. to the sliver of space between the blue atmosphere and the black of deep space itself and be released. I’ll travel on the wind, see the whole world. I’ll send you a video. Really, there’ll be a video of the release. Well, Claire will post a link to the video.
If you need to visit, grab a blanket, lay on the ground and just look up.
Love you all—
Kyle