So there I was two days ago, thinking I was having a pretty good day, enjoying the cooler temperatures, being able to have the windows open because the smoke for the most part has cleared, enjoying the sunshine. I was washing all my floors again, trying to do some deep cleaning because the fine particulates from all the smoke and ash are attached to everything and seemingly even though you clean you need to re-clean to ensure to get rid of it, its not good to have it in your house and breath it.
Thats when it hit me, there I was washing my floors, when suddenly out of now where …. I stopped in my tracks, stood there for a few minutes, then had to actually go and sit down. What was it, well it hit me that I am heading into year 8 of a 3 to 8 year time frame for my life expectancy given when I was diagnosed with my vascular Dementia. Holy Crap… sitting down, sort of stunned that it had just hit me so suddenly. I have always maintained that I intended to blow that time frame out of the water, that I would do my best to get twenty years in, but then I remembered and I’m not exactly sure what year but I think before the pandemic hit, having a conversation with my doctor because hospital stays for me where becoming more frequent, telling him I’d like him to help me have another good year he said, I think we will try for a few more than that.
But know here we are, I’ve been at the hospital all morning having tests, seems its never ending, my vascular system appears to be struggling more all the time and then it creates other complications in my body. It’s a tough cycle, on the outside I look good, on the inside a whole other story is being told. This year has been extremely difficult health wise and I’m more fatigued and can do less all the time because of it.
I believe the pandemic has likely been partly to blame, with being in more isolation, less able to be and do the activities I enjoy like walking and riding my bike etc. It’s taken a toll, and although I have done what I could, dance routines in my house getting out for a walk whenever circumstances permitted. Regardless of any of it though my vascular system is sustaining more damage, that is out of my control, and the fact remains that I am heading into the 8th year.
So what does that mean, pedal to the metal in case this is my last year, throw caution to the wind? Maybe not be so focused on doing all the right things to stay as well as I can for as long as I can? Is it just time to run the clock? I never thought those numbers would or did mean much to me, and yet here we are and here they are and suddenly they do mean something.
I know many people who proudly announce 2 years cancer free or 5 years cancer free, people with MS who say I’ve been symptom free for x number of years or someone with Leukemia who has been in remission for x number of years. It’s wonderful to hear those things, it always fills you with warmth to know that in some things and some areas people are winning. For those of with dementia, we never get to enjoy remission, of symptom free days, we will never be Dementia Free, at best we have good and bad days, good weeks, maybe even a good year, but we never have a day where it is not and does not impact our lives. I’m not saying that to imply that those other illnesses along with many others are not any less than what they are.
What I am saying is that maybe we need to be able to celebrate like others our wins, like if I get to my 9th year. Yet somehow we don’t and often times we don’t even talk about that side of things. I am not really sure why that is. I know we are always advocating for the way diagnosis is delivered be different than you’ve got 3/8 years go home get your affairs in order and get ready to die, to something with a little more hope. perhaps instead of the theres nothing we can do, it could be more of the if you strive to do these things you may be able to increase your longevity and quality of life. May be it should be that you are told that your particular type of dementia has this type of prognosis but if we do x,y,z then we could hopefully look more to this. Then maybe we would discuss it more, maybe people would have less fear of being diagnosed.
I am not fearful of dying, I’m not fearful of the end, my hope is it is quick and not drawn out. Thats a whole other discussion. But what do I do with these thoughts that are swirling around about this being that pivotal 8th year. I am asking myself questions, like does it even matter if I get more time, and if so to who, no one but me really. Yes it matters to me, because I haven’t got to Ireland or Scotland or Portugal. I have advocating I still want to do, I haven’t finished my second book yet. So yes it matters to me, it matters to me because I don’t want to leave this world before my little dog Pheobe, although she has others she loves to hang out with now and then, I’m the one who knows what all the looks and sighs mean.
So when we think the numbers they toss out at us don’t mean anything, they actually do, maybe at first they terrify us, then we settle into just living and not thinking about them, but then somewhere in there in our subconscious those dates sit until one day, you set down your mop, you sit in disbelieve and overwhelmed, and for two days you try to process what it means to you and then if you’re like me, you just decided to just sit with it, let it be, let it unfold as it needs or wants too.
Maybe I’ll liken it to baseball, I’m in the top of the 8th, do I strike out or get a home run….
For truly I am grateful that I’ve made it far enough to say I’m heading into the 8th.