I did something today both incredibly dangerous and stupid; something Linda and Cheryl and even I agreed I would never do.
Saturday and Yesterday I felt my life change forever.
Saturday I was on a ship, the Coho Ferry, lying down, breathing, and still not able to convert enough oxygen to sustain my life (I was de-compensating). That what it means when your lips and fingers turn blue, and that process doesn’t stop there, but goes on until your nose and your fingers are black, until you slip into a coma to try and preserve your brain unless you have oxygen.
I was lucky. The ferry had oxygen, and an EMT. Still, he wanted the boat to be met by an ambulance and EMT’s which would carry me off the ship.
An event like that left me scared, and looking into a future where my life was to be determined by perimeter of the 50 feet of tubing from my oxygen converter. Because when three different EMT’s work on you, or watch over you for 8 hours to try and get you home, conscious or at least alive, then popping out for a weekend trip…..how does that happen? Even the most mundane trip with Linda to help get groceries would need to be done with the reserves of oxygen lest I pass whatever invisable threshold of destruction from my disease (MSA/AAN), some threshold of energy depletion which turns my compensating body into a DE-compensating body. And then I would have to be rushed home, or to a hospital. That is the future, and if anything is likely to change, it will be toward needing oxygen 24/7.
That reality crushed me. Crushed my attempt at viewing myself as an autonomous person.
Last night was one of moaning and pain pills every 3.5 hours and this morning I woke to even MORE pain than the day before. Great!
I sat in The Chair and didn’t know what to do. I was still in shock and it hurt to breath. Things like watching a DVD or doing postcards seemed pointless; seemed so far away from where I was.
I looked outside at it was overcast but without much of a breeze. The last two weeks, I had planned, and tried to go out in my racing wheelchair to train. Becuase there is an upcoming 10K using the SAME course as the TC 10K. But I was never well enough to do the training. Cheryl and Linda had agreed that because of the nature of the wheelchair it was far too dangerous for me to ever do alone. I had agreed.
First, I have NO WAY in the racing wheelchair of reaching the oxygen canister by myself, in fact the chair is made so you HAVE to lean forward to not tip over backwards. Second, I am in a chair two inches tighter than my tightest chair, so there is no place to store anything, from a cold pack to any form of liquids; particularly the liquids that keep my BP stabilized. So to go outside would mean leaving my day wheelchair behind. That means I would HAVE to come back up the STEEP hill, though traffic, all in the racing wheelchair; all things I had never done before. To do it the first time, alone, in daytime traffic: STUPID, RISKY, DANGEROUS.
I thought, “It looks like a good day to go training.”
I thought, “It would probably be better to spending the day resting. Besides, training by myself is really risky." I paused, "AND Linda would kick my butt.”
I thought, “But, I’ve thought out the route and while it might be risky, it is also, I think, possible.”
I thought, “When are you, Elizabeth going to decide to do SOMETHING?”
I thought, "Does it have to be this? This is riskier than the trip to Port Angeles and look what happened there!"
I went and had my shower. My home care arrived at 11:30 to give me my shower. I told her, I’m planning something which means I will leave at 1:00, half an hour early. I told her I was going for a training run, all the way to the breakwater, then past the cemetery again and up the big hill, five big long hills and and somewhere between 7-9 km. I hadn’t eaten yesterday since lunch, hadn’t eaten that day. I drank two Gatorade.
My caregiver knew Linda would kick my ass. She was curious to see what happened. I got the helmet and dressed for training. I got the care giver to put on the suntan lotion and put the bike lockup key in the pocket in my top.
I when to the bike storage, pulled out the racing wheelchair, transferred and locked myself down. I had forgotten my helmet and my caregiver went back and got it. And then I was alone, either to continue, without liquids and with five hills before I could return or I wasn’t.
I started out. I had to go through traffic. They weren’t patient. I whizzed down through Cook street village then stopped outside to adjust my MP3 earpiece (gotta get up those hills best I can, I only use one ear piece so make sure I can hear what is going on around me). Then I started up the hill of Cook street (I guess six hills, missed counting this one) toward Dallas Road.
It was slow at first, and as it wasn’t Sunday there wasn’t anyone looking or waving, just trucks trying to pass, or people taking shortcuts, as Dallas Road has no traffic lights. I passed mile zero, trying to concentrate on staying low, on using the punch of the downstroke and add an upstroke pull to it as well. My thigh bone from Saturday started to hurt. Nothing to do, my feet were tied down and I don’t know why it was hurting, just the vibrators from the road and the frame made it ache so bad I wanted to claw something. I went down to the breakwater, did the full distance. At the end of the parking for the breakwater I tried to turn 180 degrees, a u-turn as practice for the race turn points. Didn’t work. I ended up half on the sidewalk. A elderly woman asked if I needed help. She couldn’t lift my front wheel. I backed myself off the side walk and leaned back enough I was balanced on my back wheel with my front one in the air. I finished the turn that way. There are no pictures. No place to put a camera for one; no one to take them for another.
Now it was a long 1.5 to 2 km of uphill, punch and pull and punch again, punch and pull, and don’t stop the rhythm no matter how tired you get. Just keep it going. Lonely road. The clouds had burned off and now it was blue skies and sun beating on my back. I dare not stop or slow lest I overheat. God, there really is acid in my right thigh bone. I keep going, over the top of the hill, and down, passing Cook street and down the hill, whizzing past the cemetery as two boys try to race me, running as hard as they can, but I pass them. Then I am going up the hill.
I notice I am not as fast overall as the last time I went training. Not as fast. But I was out training.
I had taped the knuckles which bled last time I trained, but I could tell they were getting a pounding. Punch and pull, punch and pull. The feeling in the knuckles would go away soon. I crested the hill above the cemetery, and though I planned on stopping, I even looked over at the bench I planned on pulling myself out of the wheelchair to sit and rest on. Instead I did a U-turn, a little better this time and went right back down the hill past the cemetery and and attacked the giant hill on the other side. Punch and pull. I tried not to think, I tried not to listen to the pain in my shoulders, in my arms, or worse in the bone of my thigh. I just punched and pulled, I stared at the road, I sometimes tapped the micro adjuster. I couldn't even tell what music was playing. I had to get up that hill. "Come on, come on!" I said to myself between gasps. I said that over 100 times going up hills, forcing myself on flats or inclines to pick up the pace. "Come on Elizabeth, come on!"
The cars and trucks roared by, I looked up at the people inside, they didn't even look down. But I made it to Cook street, and one last time I bent my body as far as it would go, bent like those ex-ballet dancers who seemed in boxing class stretching to be far too flexible. I had my hands far past my feet, my back low and head so my chin touched the frame. My hands in the gloves, stretched far ahead had the thumbs hooked into the push steering.
My thigh bone hurt so bad I wanted out. At Cook Street Village I stopped by the bus stop. One man looked at me briefly but then continued to check the bus schedule. It only took 10 seconds to realize there was no out, only on. So I angled back out, checked over my shoulder and push, push. Too tired to pull now, just push and push. I was on the hill up Cook Street. On the opposite sidewalk was a woman with a walker. We raced in slow motion. I refused to use my thumbs to hook the spokes to pull me up. I would finish this as I had done the training, punch the rims.
In truth, in my planning, I did not see how at the end of training, I could make it up this hill which I could do in my day chair only a few inches at a time. It was too steep and I would be too tired. This was the grey hole in my planning. I punched, and looked over to the woman with white hair on the walker. She yelled some encouragement but I couldn't hear it above traffic. She smiled. I smiled back and then lowered my head. "Come on Elizabeth!" I punch, and punch until I overtook the walker. She grinned and waved.
At the top of the hill I turned and then turned again, one last hill, away from traffic. Finally, at last, the final turn into my driveway, 1 hour and 11 minutes after the first punch out onto the road. When I saw the bike lockup doorway at the far end of the drive, I started crying. Little sobs bursting out of me as I steered around the speed bumps. And tears falling down, leaving wet ponds and imprints on my joggers. I pulled myself out of the racing chair and back into my day chair crying the whole time, sometime silently, sometime not.
It wasn’t the pain. It was the emotion. I had willing chosen risk again, forced myself and won. A dam of emotional release let loose; I had part of my life back. That was worth crying over. I did not let my body or recent medical history dictate who I was going to be.
I cried because my world was bigger than fifty feet of tubing from an oxygen concentrator.
I could hardly wheel, because my arms were twitching so badly, my knuckles bloody from the punch and pull, even through the medical tape. My hands weren’t functional, shaking visibly in a tremor so wide, it was a quarter inch. I dropped everything. It took a long time to get the door open. I was smiling, I was crying, I was in pain, incredible back and body pain.
Upstairs, I had another Gatorade and tried to eat a sandwich Linda made. I dropped it. Ate it anyway with both hands and forearms holding it. I wrote a couple emails saying, “I did something stupid, but I think I am getting better!”
Then I took my blood pressure and becuase of what I saw I waited five minutes and took it again. My diastolic was so high (over 100) and my systolic higher along with so many erratic heart beats (over 25%) I thought that I was sure to have a TIA. I might have one just if I sneezed. I tried to write a synopsis on the comments from yesterday in case I lost my memory. But then I erased it. I couldn’t make a synopsis of pushing myself for three minutes longer than my Times Colonist 10K, but without Gatorade or Oxygen, without any cooling vest or cooling device of any kind. I couldn't make a synopsis of what that meant to me.
My body was shaking, from the heart erratic and the pain. And yet, I was smiling, because I had a SHITLOAD of endorphins running though me! So why, 7 hours later am I still smiling, even though my painkillers can’t/aren't taking the edge off the muscle pain I feel?
I have hope again. I am living. Yes, I was in pain, and I am in pain but pain I had planned, pain I chose. And yes, things could have gone badly. I could be in the hospital. Linda told me after she found out that the oxygen bottle I took was empty, all the full ones were in her van at work (????!!!!!!). So much for my slight safety back up.
I have entered to race the Hudson Bay Company Canada Day 10K. Unless hospitalized, I will be up at the very front of the race in my retro old racing chair carrying an extra 10 lbs of oxygen and cold break packs. I will be an official wheelchair racer.
It may/will likely be the last 10K I will do. I am getting slower. Like boxing, I am not building muscles, not getting reserves. But I plan to finish it. If I have to dump water over my head and get out of the racing wheelchair and lie down and rest and then be poured in to do a few more km and rest again, I will finish the 10K if it is possible for this human. Maybe I will finish it even if it isn’t considered reasonably possible for this human. Did you see that? That was hope AND sass!
I want to live for a week, I want to live until I can race that 10K. I will race it for me and for all neuro degenerative diseases, fatigue and pain chronic conditions, Lupus, Lymes, all of them ride with me, all up at the front with the wheelchair racers: because stability and consistency are not the defining aspect of disability, nor are they going to be the limits of the wheelchair racers that day.
After getting back I was sent an email. I had wanted to enter a photo contest. My lack of telling days and time meant I missed the finishing date. The photo contest was from the paraplegic society (I am a member). The emailed me to tell me it had NOT finished. They sent me a reminder to send in my pictures of “The view from the chair” to be in the contest. What is this, TWO things to look forward to in one day?
My hands were non functional for two hours. I took the BIG pain relief pills, over 100 mg of pure Tramadol, synthetic opiate. Didn’t help AT ALL. I was in pain from every nerve left in my arms that still existed. And the rest of my body, my back, all complaining. I still couldn’t hold my hands still or use them. Took the strongest muscle relaxants I had, the pill fell on the floor. So did I, and I licked it up.
I took it and I lay down. My body and bed shook from the WHUMP, WHUMP, WHUMP of my heart beats. It seems I had done something a little foolish, and now I was going to pay the price. It seems I had done something a little wonderful and now I would pay the price.
I have decided. I am going back to Port Angeles, and I am going to the Hoh rainforest. This was was where we originally intended to go on Saturday, but I was too weak for the transport out there so we went to Hurricane Ridge. But it turned out I was too weak for that too.
I don't know how, but I will figure out how to go to the Hoh, and then I will do it. I will go back, not to hurricane ridge but to the Hoh Rainforest and I will take my wheelchair out on the trails. This is my will. I have, in all this zeal of making decisions, taken the small decision that trying to do go to the Hoh BEFORE doing the HBC 10K race might be pushing it a little. Like playing Russian roulette with an automatic bullet clip would ‘pushing it a little.’ I’m not stupid (no laughing!). I’m just a little high on not being fate’s kick doll.
The 10K will only be the aftermath. Today, going out, knowing I was weak, knowing I had not trained in over two weeks, refusing to alter the training route I had planned and decided on three weeks ago (Linda thought it EXTREME then), doing it to the last punch on wheel rim and then coming home. That was the Victory. I faced my depression, my pain, my fears (which were many) and I decided to act, to get ready and to go down to that bike room. I made my own dream into a reality, even if I had to play the odds to do it. And that is why I cried. And that is why I smile even though every letter I type just adds more pain. And I will be in pain for a while (a long while?).
I asked you to watch and witness, and now I ask for you to rejoice with me. Because while going out alone today was a VERY STUPID thing to do…I made it. And now there is balance. Now there are TWO possibilities. One, that my plans and dreams will be wrecked, and that I will again have a DE-compensating body, unable to sustain my own life, trapped and bound to the hospital bed and my oxygen until whatever horrid fucked up central nervous system part of my melting brain decides to recover. Or ANOTHER POSSIBILITY: that my plan might work, that I will have to pay a price, surely, but that I can still MAKE plans, because as long as I am willing to pay that price, it doesn’t ALWAYS have to be pain spent alone, while the world spins on.
So now, there is the chance, the possibility of looking forward to things, and this time that meant coming home 1 hour and 11 minutes of pushing myself as hard as I could and making it. So what if three of my fingers turned a little black at the tips after that? That’s why there are oxygen concentrators waiting for us at home, right?
My life isn’t my own, I cannot will-to-power how I want things to go. I know that. But my decisions, my dreams are my own again. And that I did not have yesterday.
I still don’t know how to go on in the long term (long term for me means ‘two months’), but I’m smiling again. I’m crying because I WON. And I know how to live for the next week or two.
It’s a start.
13 hours ago