Who is Sue and what is Suelandia?

Monday, October 31, 2011

The walking dead

Hey people.  Yesterday was the big Halloween race at the trail.  I didn't race this year-- just helped-out and rode around for fun.  The day before we took leaf blowers out on the trail and completely cleared it, all except this one patch of crimson leaves that fell from one maple tree.  They were just too pretty to remove.

It was awfully good of that tree to lay a red carpet for Fabulosa.  Even the trees know she deserves special treatment.

I had a lot of fun riding around being obnoxious calling people "commoners" and telling them how my bike was made out of Diamonds etc.  I love Halloween.  I'll be making a video of all the pumpkin smashing mayhem too.  It is always a fun party and this year was no exception.

Dan was a zombie.  Zombies are all the rage now.  What is sort of funny about that to me, is that although none of us look like we're decaying, we all do have an expiration date, and the clock is ticking.  We're all marching closer and closer to our mortality, it's just a matter of if you look at it as being busy dying, or busy living.

About a week ago I noticed my hands are getting numb quite often.  I have problems with them when I work a lot.  They'll cramp up when I ride, for example, and there is a tremor condition that runs in my family so sometimes they shake.  The numb thing is sort of new though.  Of course the idea popped into my head-- "What if I have some horrible disease like ALS?!" and I went through this whole scenario of what I would do if that were the case before actually googling the symptoms and finding them to be nothing like what I am experiencing.  (Whew on that.)

Still it was a good little scare-- a good exercise.  We should all step back and look at how we're really spending our time once in a while.  If you got a devastating diagnosis--- "You have a disease that will begin inexorably wearing away your physical self in a year, and you WILL BE DEAD in 3 to 5 years"-- What would you do?

Here's what I came up with:

I would for sure spend a lot of time with my friends.  This is something I already do, but I'd make more of a point of it, instead of trying to *fit it in* around work etc.  I'd want them to have a good time with me though, not be all bummed I was dying.  At first I thought I'd not tell them, but then there would be this vibe of disingenuousness in the air, and that would taint those relationships.   

Instead I decided I would tell  people, but tell them I was undergoing some very hopefull  experimental treatment (and if there was one out there I would actually try to get in on that of course).  This way people would have some time to process it-- my time might be more limited than theirs, but they could go to the hopeful place that the miracle treatment might work.

I'd want to have adventures, but I enjoy that kind of thing now, so I guess I'd just be more appreciative of them, and purposeful about arranging them.

I'd do a lot of outsidey stuff, like what I enjoy now, but I guess just being more aware of the ticking clock would make me not put off anything I felt like doing.  Permission to skip.

There were a number of things I'd continue doing that sort of surprised me--- for sure artwork, but I'd concentrate  more on making some significant pieces, not bother with anything that didn't really resonate.  Also-- I'd forge ahead with new idea.  That kind of surprised me, but I would finish up my classes and delve into that new art form and still try to get that business up and running.

I'd keep working at the trail.  It might seem dumb to spend what limited time I'd have left blowing leaves off a mountain bike trail and shoveling dirt, especially since nothing we do over there is a permanent fix, but I would.  I enjoy it, and feel helping that park is important to me.

I for some reason thought of getting a dog, because then Dan would have a pal around after I checked-out (which I'd arrange btw-- I wouldn't let things get to the nursing home/ventilator stage), but then I thought better of it.  The best thing I could leave him would be the opportunity for a fresh start.  He wouldn't need any reminders of what we'd had.  It would be part of his DNA.

I'd work on the most frustrating relationship of my life, and try to get that sorted out so that person could get some closure if nothing else.

So now I have some guideposts-- or more accurately have been reminded of them.  I feel lucky to be able to just do something like this as a little refocusing excersize, without having do actually deal with such a horrible disease.

So what about you guys?  What would you change or keep the same?


Maery Rose said...

It kind of sounds like you are already pretty much living the life you would if you knew you had limited time, which I think it pretty awesome! And says something good about your awareness of what's important and following through on that.

The first think I would do is quit my job and write all the things I've been putting off for forever. I would ride my horse more and spend more time doing many of the things you wrote about - time with friends and get outdoors as much as possible. I would go to New York and spend time with my son and from there I would go to Ireland and ride one of those fuzzy stocky Irish ponies across the countryside. I hope I would have enough time for all that...

Linda said...

This is an interesting blog to me, and I am again reminded of my Mom who was given that horrible diagnosis. Her first comment was: "well, lots of people don't get the chance to say 'goodbye'. And she lived pretty much as you described--and even though she did undergo experimental treatments, she still knew she was going to die from this disease. But not to let hope fade in any of us. And some of the time she used her diagnosis for shock value like when the clerk at the balloon store said "maybe I'll see you next time you're in town" and she replied "nope, I'm dying and this is probably my last visit"=silence...sick and twisted sense of humor (so that's partly where I get it). But she knew what was happening and lived life with no regrets. She was planting her garden with us less than a week before she died, because it was something she loved. She died at home, at peace, and ready.
She was an inspiration and a great example-setter.

pseudosu said...

Maery Rose--
Maybe you will get to ride the fuzzy ponies one day-- I hope so! I know you hate your job. You spend so much time there. I wish you could find something else. I'm glad you have been taking the opportunity to do the things you enjoy when you can. :)

Thanks for sharing your experience with your mom. It sounds like she really did set a great example, and decided her time would be sent living instead of dying. How wonderful-- gardening with people you love right to the end. Could any activity be more life affirming? Very cool.

strugglingwriter said...

My Grandma died of ALS. Just a horrible, terrible, disease. In your mind you are the same person, but your body is just rapidly shutting itself off. It was weird because she was always the healthy one between herself and my grandfather and there she was gone at 78 in her sleep at home, and he's still kicking at 94.

I have an idea what I would do. I would spend an awful lot of time (maybe all of it) in denial, all the while having as much fun as I can. I'd be telling myself that somehow I'd be the one to beat all the odds and live a long time with the disease. I don't know how I'd sleep otherwise.

Also, there is no way I'd keep doing the 9-5 job thing if I could avoid that. Time is way too precious.

irishk said...

Great post Sue! I wonder if it's something in the air, as I have been thinking alot about the end of my life and I really have no idea why. Maybe it's Fall; watching the seasons change is always a life-reflecting time for me. Maybe it's Hannah's death and thinking about the impact a non-human can have on someone's life. I'm a verbal processor, so I think I would spend a great deal of time making sure the people I love know how much I have valued them. I would write things for these people ~ words that could be reread over and over and paper that could be held. I would use their names as I thanked them for the privilege of having them in my life, so they could see the words whenever they felt lost or alone. I don't think I would tell anyone until it became apparent. I would go on a safari. I would see a Broadway play. I would spend the night all alone in the woods. I would sleep on the beach of an ocean. I would let my hair go gray. I would allow myself to be vulnerable and accept death as part of life.