I had to renew my driver license for the first time since being sick and, thankfully, I could do it online. However, when this question came up, I stared at it for a long time:
I wanted to select yes. I’ve always been an organ donor. I imagined they’d harvest everything in my body and many people’s lives would be enhanced or extended. But, with this illness, I can’t risk it. I won’t give blood and I won’t donate my organs and it kind of breaks my heart. I wouldn’t be able to donate a broken heart, anyway.
But, let it be known, that I want my body donated for ME/CFS research. I’m not sure how to make that happen, but, if anyone knows, please give me details. Worst case, I suppose I can donate for medical research like my mother has organised with University College Dublin.
After the organ donor question, I got this. This one I stared at for a very long time:
Riding a motorbike was my dream. When I was a teenager, I got a second- or third-hand 50 cc moped which gave me incredible freedom and convenience. The Dublin bus system was unpredictable and I would crank that hair dryer engine all the way up on the dual carriageway to get to classes or get around after the buses stopped running (see previous post about being a nightowl).
During the very first conversation I ever had with my husband, he asked me, “If you could do anything right now, what would you do?” I had been telling him that I’d planned to move back to Dublin that summer, but, because of an upsetting situation, I didn’t know if I could. When he asked me that question, I answered, “Ride a motorbike across the country.” Unbeknownst to me, he was passionate about motorcycles. He hadn’t owned one in a while, but had recently been researching his next bike. I think maybe it was right then that he took a shine to me.
A few years later, I was tipped a brand new motorbike by a regular customer at the restaurant in which I served tables. He had been coming in for months, maybe years and, one day, he and his brothers pulled up on Harley-Davidsons. I got excited and whipped out the postcard of a Low Rider that I’d carried around for years: my goal, but I’d never actually sat on a Harley. Over the subsequent months, he tried to convince me to let him buy me a bike. I told him he was crazy. He told me he was a Microsoft millionaire (I’d never known that) and his wealth came to him like “stepping in shit.” He said it was luck and he had bought four or five motorcycles for his brothers and he wanted to know that he could altruistically buy one for someone who wasn’t a family member. I still told him he was crazy. He said he wanted to do it and I could sell it the next day and he wouldn’t care at all. He sat with my husband for hours and convinced him that he had no ulterior motives. One day he invited me to the Harley dealer and I thought it’d be fun, so I went and discovered I could reach the ground on a Sportster. He asked me what colour I liked and I said, “Black, definitely. Black and chrome is sexy. And a matte black helmet.” But, it was an off-hand question and an off-hand answer. I was just fantasizing. I had no idea what he was going to do that day; I think I couldn’t let myself accept it. While I was browsing, he was signing the papers. I tried to get into the office to stop him, but his brother stood in my way, grabbed my shoulders and said, “You gotta let him do this.” The next thing I knew I owned a brand new 883 Sportster, a helmet, custom-tailored leathers and a year of insurance. I used to stroke that bike, like it was a pet panther.
When I took the motorcycle safety course (which every driver on the road should take, it is so eye-opening), I dropped the bike twice, which should be an instant fail. They passed me, though, because the Honda Nighthawks they used were too tall for my wee legs and I had a perfect test besides keeling over at the stop signs.
I was never comfortable on a motorbike the way my husband was. He would leave for weeks at a time on long-distance trips, driving I-don’t-want-to-know how fast on country switchbacks. I would ride to and from work. Although I drove like a Pole Position speed-demon in a car, I was a granny on my bike. But, oh, I loved that feeling of freedom. One of my favourite memories of my life was driving across the Cascade mountains during the summer. Having taken off my jacket, which is such a no-no, I was just in a tank top and that rush of hot air, the empty road, the mountain scenery and the fear-adrenalin from not having my protective skin… it was like I’d sprouted wings.
But how can I justify $25 to keep the motorcycle endorsement on my driver license? The truth is, even with significant recovery, I will undoubtedly never want to tax my body and brain the way motorcycles do. My muscles were always tense, my hands lost all their blood supply from the vibrations, my brain was never not on high-alert, watching every car in every direction, scanning constantly for hazards in the road, animals, idiot drivers. It was stressful riding in the rain or driving over oil puddles or over grated bridges. I’ve never had an accident in a car, but I have on my bike, injuring my knee in the process. So, of course I will never ride again. It’d be like running up stairs instead of taking the escalator… and M.E. patients, even if they can stand up and walk, take the escalator.
So, I stared at the screen for a long time and, in the end, I kept the endorsement. If for no other reason than to have a beacon of hope for the future.
With my friend, Z., and my Kawasaki.
Rag and Bone Shop of the Heart 
Aww, what a neat story!! When I went to renew mine, it was a real gong show & then I’m assuming cause I’m 70, they tested my eyes. Everything went blurry. She said I needed to see my eye Doc–I just had. I didn’t even try explaining my MAJOR BRAIN FOG, FATIGUE FROM WALKING & STANDING SO LONG & the terrible lighting in that old office! I went home in tears & still haven’t tried going back–to a diff office! I so want to be able to at least drive around town! THIS HORRIBLE DISEASE!!
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Oh, BJ, so sorry. We need the freedom during our few ok hours — or, at least, the ILLUSION of freedom. To know that you can’t drive, even if you’re physically able would be awful, but making the trip back to the DMV… such a chore. 😦
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Liz, you and I are living eerily parallel lives…..I just filled out my organ donor card because I had to renew my driver’s license. I don’t know if my organs can even be used, but I checked ‘yes’ just in case. I didn’t check the medical research section- I was thinking more like a medical school thing, I wouldn’t want that. Tissue samples for research into mast cell stuff- that would be just fine- I will have to add that!
I also had to decide last week whether or not to renew my professional college membership. Without it, I can’t go back to work. They have a special ‘on leave’ option, but you can only do that for three years. This is my last one. So, by this time next year, I have to be back to work, or I will have to recertify if I ever want to go back. I stared at that membership page for a long time. I won’t pull the plug just yet…
Two steps forward, one step back, a step sideways…and repeat.
Karen
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Oh, the pressure to return to work or lose the membership! Karen, that’s awful. Can you somehow work part-time from home? I don’t even know what your career is (was?). I’m glad you kept it. This time next year we will be different… ever hopeful. X
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I was an AAC SLP. Alternative and Augmentative Communication Speech and Language Pathologist. I worked for a school board, going out to the schools and seeing the kids in their classrooms, coming up with ideas of how to encourage communication, etc etc. I saw kids who can’t use speech to communicate- not kids who are deaf and speak ASL, but kids with other issues. About 50% of them had autism, the rest had physical disabilities such as cerebral palsy, or cognitive challenges, etc etc. The job was crazy, but I loved my profession. It was a calling for me, and I was really good at it, to be brash.
Even if I could deal with all the triggers at work, I just can’t imagine having the energy. I say that I got sick in November 2011, but I’ve been a bit sick for a long time. I was struggling with systemic arthritis (EDS?), lots of food allergies and sensitivities, skin issues like hives and dermatographia. I’m a long way from being able to work.
I could maybe take one or two kids on, on a really sporadic, primarily consultative basis. But, in order to do that, I have to go back to a full membership, and get malpractice insurance. It isn’t hugely expensive, but it would take a bit before I was actually making any profit. Ironically, it would actually end up costing me- and here’s why. Any extra income I make is clawed back by my long term disability, but they don’t factor in any overhead or anything. They assume that every penny of that is ‘income’, which, of course, it isn’t, but they still take it off my benefits. Then, of course, comes the assumption that if you can see a kid for one hour, once a week, when you’re having a good week, that you should be able to go back to work full time! It’s definitely an all or nothing with disability insurance. It’s really designed for people with an acute illness, not people with a chronic illness. With an acute illness, once you start to get better, you slowly keep gaining strength and stamina- not so with a chronic illness. I think it’s something that government is going to have to sort out- this way people are a much larger drain than they need to be. I could, for instance, be a mentor for a young professional, to give advice and support to them over the phone.
Jax, that letter is a very good idea, I think here, people just attach them to their will, we call them something else here, but I can’t remember off the top. Another thing I need to do is a living will- if I’m ever not able to communicate my wishes about my care, that’s super important. I’m so bad with the ‘running my life’ stuff- I need a will, even. I think that’s someone could make a great job out of managing other people’s lives- making sure they pay their bills, doing passport applications, do my taxes, deal with this application, and that form. Probably one of my weakest skills- I just hate it. Wonder why?
Cheers,
Karen
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In the UK, you’re not allowed to give blood if you have M.E. so I’m fairly sure you wouldn’t be allowed to donate organs either 😦 I still carry a donor card, but in all likelihood the medics wouldn’t consider me a suitable candidate esp because of my EDS – pointless putting an organ made from faulty collagen into a sick person.
I’ve done a ‘Letter of Wishes’ to go with my Will which states I’d like my body to be left to the ME Association for their tissue bank, then lodged a copy with my GP. This info should also be included in any Enduring Power of Attorney so your loved ones know your wishes. You could try approaching the American ME charities and asking if they would be able to use your body and if so how you’d go about donating it? x
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Jak, the letter of wishes is a great idea. And maybe I’ll ask this question online about charities that might be able to use my body. I’ll update here. But, for now, my family does know my wishes, if they’ll remember, and it’s in writing on this blog. 🙂
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