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Words by Julie - Living Life With Paralysis

The last frontier 4

Skin. It is the largest organ of the human body. Maybe you didn’t think of it as an organ? It’s actually more like a system, but let’s not get too complicated. Multiple types of tissues working together; nerve cells sending and receiving messages, glands secreting sweat and circulating blood to regulate temperature and water levels, protecting our body from being viciously attacked by bacteria and viruses that surround us every day. That is a lot of responsibility. So what happens then when some of those jobs can’t be performed? Do you die? In short the answer is no, but the longer version is what has been stewing around in my head for quite some time.

It all came into my mind yesterday. The kids and I were listening to the CBC show called “Out in the open” which focuses on topics that people are thinking about, but maybe not talking about. Yesterday’s program was about the loss experienced by those who have had miscarriages – not a particularly uplifting topic, but neither are most of the topics that people don’t talk about – which is WHY they don’t talk about them. Either that or they are personal body issues that are considered to be just plain gross. At the end of the show they invite people to call or email their suggestions about a topic, which was when Ella suggested that I should. I said that I could talk about what it’s like to live with paralysis because most people don’t know.

So off I went, later that day, to the CBC site to make my pitch, “tell my story”. While I was typing I ended up going in an unexpected direction. In the end, I realized that I had been thinking about it but, had never put it into words. Paralysis is so much more than just not walking. It may have started a few weeks ago when one of my Parkwood friends was sharing some of her stories of getting back out there after having had her heart broken. One of her dates was starting to do the “can you feel this?” (something my kids did with me very early on) and her response was “oh, so we’re going to play this game, are we??”

But maybe I have been thinking about it long before that? Which is where even I get uncomfortable about sharing.

Do you remember in biology class seeing the image of the sensory nervous system, the one that shows how the lips and hands are super sensitive compared to all else? It shows them as grossly exaggerated? Well, even though this is true, the rest of the body is important too.

Okay, Julie. Just get to the point already? I miss it. My skin, that is. Not that it’s gone, of course. But what it should be doing for me – I miss. There’s the physiological stuff – sweat and temperature regulation, sure – but it’s the being able to feel. Ever spoon with anyone? The handle is just as important as the spoon itself. Have you ever tapped people on the knee while having a conversation? Guess what? Can’t feel that either. You know that feeling of being so close there is no space between you? No daylight or air exists in between? Not only does that rarely happen, I’d have to look and see if it is. I can’t tell. Touch is so important – you don’t know what you’ve got until it’s gone.

I know I have talked about this before, and I know that not everyone is a “touchy” person, it doesn’t score high on your needs for feeling loved, but it does for me. And now that two-thirds of my skin can make contact with absolutely no sensation or response? I need it more. I hug most people – even if I don’t know you that well and sorry if you are not a hugger. My kids lay in bed with me most mornings even just for a few minutes. It’s wonderful and I give them long hugs every chance I get.

Theo’s never been a touchy/feely person, I would be the one to walk up to him and initiate a hug. We are in a different place now. When I roll up to him my forehead hits his bellybutton, maybe. It does not accomplish the desired effect. We have pushed-together twin beds (my side has the head/foot going up/down option) which make a King. I go to bed early, he stays up late. I sleep in, he gets up early. We used to go to our queen bed around the same time, read a bit, snuggle and fall asleep. Now it’s different. I’m usually asleep when he comes to bed and he’s long gone by the time my ears hear the first stirrings of morning. And I think he’s afraid – afraid to touch and make my pain worse. But I’m not always in pain.

Our attempt at a selfie. I think we are too old to learn how 🙂

I have written about getting some motor function back – just a bit in my hip flexors. The reason that has happened is because I have been working hard to try and get a message to those muscles, only then can they respond. It’s a multistep process. And I have had lots of therapists helping me. Perhaps what I need to get my sensory system – my skin – to respond is a continuous game of “can you feel this?” It should be part of my therapy. Theo should be my therapist.

Relationships are hard.

4 comments

  • Anonymous says:

    I do that with Mike's feet – we used to give each other massages so now when he lays in his bed I still tickle his feet and ask do you feel that — hopefully one day he will

  • Ernest Dow says:

    Touch is *so* important! Keep on hugging. Hubbies need to be teachable in this area. Persist, Teacher! <3

  • Julie, your raw authenticity is inspiring. Thank you for continuing to share.

  • Elizabeth Perron says:

    Hi Julie
    My name is Elizabeth and I used to live in Londesboro and live now in Vancouver and saw about your story on a couple of peoples facebook pages and am really enjoy reading it right from the beginning it is a great story. All the best in the future and looking forward to reading more entries

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