Going, going, not gone, yet

I can’t even give my body away! Don’t get me wrong, I’ve never tried to sell it, but after my sister’s sudden death, my husband Ron, and I, decided we’d better get our affairs in order. My sister was our power of attorney for everything and the executor of our estate. Now that she is gone, everything needs to be changed.

Thinking that I’d like to be useful up to and including the end, I thought that surely some organization, medical school or teaching hospital would delight in a really well worn CMT2A2 body to study. Boy, was I wrong.

My search began with a call to the mortuary people who will be picking up our bodies when the time comes.

Nope, they don’t even know who to ask but there is a transport company in Toronto that takes bodies everywhere. Call them.

I make the call. Yes, certain places take bodies but the body has to meet certain criteria: no recent surgeries, no communicable disease, etc, etc.

I don’t expect to be dying after surgery but who knows how the end will come. As far as a communicable disease goes, they are far and few between here in North America but you never know what will be going around the old folks home if I check out in my 90s with only a few of my marbles left like my mother did.

McMaster University, that trains many of our young area doctors, said they would take me but upon further questioning couldn’t guarantee that I wouldn’t just be used for regular anatomy studies. My old body is so far from regular that those med students would most certainly be led astray. And, what a waste of a perfectly good CMT 2A2 body!

I feel like my body is akin to a used car with added accessories. Along with one terrific 1942 model they get fused toes, feet and ankles and they can play with the metal screws and staples that hold them together.

Also included are very slim calves with no added padding to get in the way of often stressed out, splintered shin bones.

An extra heavy thigh with added padding and a luxury-style derriere beautifully spread from years of expert sitting is a real feature.

A liver likely damaged from tons of painkillers and heaven only knows what the thousands of acid inhibitors I’ve taken over the years have done to my stomach is thrown in for examination.

My intestines are thickened from decades of constipation, sort of like winter tires with a few bulges here and there.

My heart, the main spark plug, is weak and working hard to keep my ever-cold extremities at a constant just below room temperature.

There is a fault in my electrical system because something is burning across my derriere all the time and down the back of both of my legs.

My hands feature curled fingers that only work part of time but there are great strong fingernails for prying things open and scooping up small things. My thumbs haven’t moved in maybe 30 years…a great study in atrophied muscles. My wrists feature wrist drop and they can have my wrist braces if it makes any sense to show those kids how a simple piece of plastic works even better than surgery.

One thing I do have that is really good is great upholstery. My skin is terrific – hardly any wrinkles at all. Yet.

Above the neck there is only one vocal cord working but it does the trick (is that the car horn?) and my eyes have both had double cataract surgery done on them plus lovely new lens implants. I see well. I guess they’d be similar to windshields.

My headlights are terrific round DDs.

Someone, somewhere once said I had killer eyebrows. Nobody really cares about eyebrows when they are taking your body apart.

What my brain will be like when I finally leave this mortal coil, nobody knows. The doctor looking after my mother said hers looked like lace when she died. I may go the same way if something else doesn’t get to me first.

I guess you have figured out that I’m not too broken up about dying. I don’t want to die in pain or neglect in some rest home but you take what you can get.

I did hope that a good CMT 2A2 body would be of use to someone for research purposes but I guess not in Canada, anyway. Shipping me to the United States would likely be a logistical nightmare, so that’s out as well. I can just imagine the questioning at the border crossing. The customs officer leans over and asks the driver of the hearse: “And what do you have to declare today?” Answer: “One terrific CMT2A2 body for research.” And then the fun begins.

Realistically, there likely are legitimate ways a body can be shipped into another country but I don’t think I can put my husband through the stress. If I could arrange everything beforehand, it might work.

My husband and I bought a double cemetery plot when we were married 34 years ago. It cost us $35. Yep, that’s right, $35. It’s in a lovely old cemetery out in the country and there is a big herd of Jersey or Guernsey cows, I’m never sure which is which, right across the road. It’s our kind of place.

It’ll be a lot easier for Ron to just have me picked up and shipped to the crematorium rather than having to fill out a stack of papers to have my body transported to a medical school somewhere, but hey, you can’t blame a girl for trying.

I love this photo by Paul Alexander of me on my scooter. It makes me feel good.

I love this photo by Paul Alexander of me on my scooter. It makes me feel good.

I’ve always wanted to have, She finally got warm, on my tombstone. I don’t know if Ron will do it but I might just get that done before I go. If I can’t give my old body away, it will at least rest with the cows that I love so much. Maybe Ron will mix my beloved dog’s ashes with mine. I have always said I’d like to go where dogs go. Who knows, I may find out where they go and my journey will continue.

Too bad about the medical schools missing out on a great 2A2 body, though… their loss.

I hope I’m not going anywhere anytime soon but I’ve learned that there is a very thin line between life and death and you never know when the end will come. I’ve always believed that if you can’t be useful, at least being prepared.

Until next time – stay warm.

8 Responses

  1. Linda, what a wonderful article and so humorous! Enjoyed it so much at the end of the day. I have a couple of questions for you. I had breast cancer a year ago and took radiation and I’m fine. But now my CMT is progressing and two fingers are acting like they have springs in them at the knuckles. I also take Arimidex which is a cancer drug that can affect the joints. It takes the estrogen from my body. Do you feel it’s the stress of going through it all or would you try another drug? Thank you,
    Glenda Barrett

  2. Linda: I’m so glad to know that your fine sense of humor is still intact after all you’ve been through lately. Keep hanging in, I need you there.
    Onward! j.

  3. I’m having no problem donating my brain for Parkinson’s research to Columbia in New York, BUT I haven’t filled out the paperwork yet because I’m having a problem deciding who my next of kin might be at that time, am between neurologists, running out of options and don’t know who to try next AND don’t have a designated funeral home to take care of storing my body! Death still seems far far away, and I’m not anticipating dementia ever.

    Keep smiling, and you look GORGEOUS!


    >________________________________ > From: CMT and Me >To: gezimmer@att.net >Sent: Tuesday, January 27, 2015 4:28 PM >Subject: [New post] Going, going, not gone, yet > > > > WordPress.com >Linda Crabtree posted: “I can’t even give my body away! Don’t get me wrong, I’ve never tried to sell it, but after my sister’s sudden death, my husband Ron, and I, decided we’d better get our affairs in order. My sister was our power of attorney for everything and the executor o” >

  4. Linda- as another female with CMT, thank you for having such an awesome sense of humor about life. I hope to one day have a sense of humor like yours. Right now the only thing laughable about my cmt is my nickname with my friends–“Forrest Gump”. Yup-that’s me. My brace and I got that nickname around the time I was diagnosed at 21 (27 now). If you don’t mind me asking– what are some things you do to help you with the pain and discomfort? Besides the painkillers (I try to take as few as possible). Thanks! Stay warm and happy! ☺️

    • What are some of the things I do for pain and discomfort? I’ll list a few: I try not to get too tired. Exhaustion makes me shake and I only have so much energy to spend on any one thing. Even the cold can take it out of me. It’s -22 today out there and I know if I go out in it I’ll be in bed tomorrow with everything I own hurting. I try not to stress out about things. It’s easy to say live for now but hard to do. However, if you think about it, yesterday is gone, you can’t redo it and who knows what tomorrow will bring. So don’t sweat anything. Just do your very best. That’s all anyone can ask and all you should ask of yourself. To sleep without a lot of pain I use cold packs from the freezer on the back of my right knee where the burning pain is the worst and another one tucked under my right hip as I’m lying on my right side. I take an Advil and 1/2 a clonazepam (easier to google it) to sort of get my mind to stop working and I’m usually asleep within an hour. I watch tv until I fall asleep and sometimes fall asleep with it on. I try not to sit at the computer too long because more than four hours I hurt so bad across my shoulders and down my ribs and back that I’m in agony and have set myself up for an evening of pain. I try to keep hydrated because if I don’t I get really bad muscle spasms I’m my chest, back and upper arm muscles. I guess pacing yourself and getting to know your own limits is the key. It’s very hard to do this but you learn with years of living with CMT. And don’t sweat the Forest Gump label. Look what he accomplished! Many years ago I designed a completely accessible resort for people with disabilities. It had a bumpy start and eventually I had to let the idea go. A friend began to call it The Forest Gump Project. At the same time my idea was faltering, a man near us was developing some land he already owned into a place for people with disabilities, especially children. We didn’t know about each other for a long time. When I saw what he was doing I eventually got involved. Many years later I am still involved and was the accessibility co-ordinator for a million dollar centre that opened there two years ago. Look up HeartlandForest.org. My thinking is that it doesn’t matter who does it or who gets credit as long as it gets done. Forest
      Gump gave everything he did his all. Heartland began with nothing but land and it is absolutely beautiful now with miles of accessible trails, a lovely building with a great woodworking shop and something going on almost every weekend. Stay positive my friend. Keep busy. Help others and you’ll feel terrific. Life with CMT can be a challenge but we are up for it.

  5. Great post Linda! I’m POA for my eldest sister in foster care and I’m going to make her burial plans as easy on me as possible but still honor her traditions. Your burial place sounds wonderful. Now I’ll have to think about a statement for my marker, too!

  6. That is a gorgeous photo of you! I to want to donate my remains to a medical school guess I need to look at what needs to be done ahead of time. Keep up the good work Linda you mean so much to all of us. I wrote my yerly inventory on my blog you might find it interesting.http://job6-3.blogspot.com/2015/01/yearly-inventory.html

  7. Linda: Thank you for this post. I laughed so hard; I cried so hard; I learnt so much. YOU are an inspiration, not just because of your CMT, but because of the ways in which you share your life—–even though you have struggles, you infuse your life with positives and always with humour. I feel blessed to have met you online and yet feel as though I know you in person.with love,rosemary CMT-1


    Linda Crabtree posted: “I can’t even give my body away! Don’t get me wrong, I’ve never tried to sell it, but after my sister’s sudden death, my husband Ron, and I, decided we’d better get our affairs in order. My sister was our power of attorney for everything and the executor o”

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