Grief makes you grow but you know what they say about growing pains

I think I’m grieving.  It feels like a deep still sadness for a perceived loss of freedom as well as an actual loss of so much of my hand function.

Cat on a porch taken on the Sunday roll

What makes me think so? Every time I go to pick up a tube of paint, my choice turns out to be black or grey or silver.  I’ve painted seven canvases this spring and summer and all begin with either grey or black as a primer. I can’t get away from the dark.  I want to paint in bright lovely colors but they just don’t come.

Grief can come every time you lose something and with CMT you lose throughout your lifetime.  It’s slow but overtime these small loses can amount to a severe disability. For me it began with my ability to lift my feet up so I tripped and fell all the time.  Then I could no longer run. I still remember the wonderful feeling of being able to run. Then I lost my ability to balance so I couldn’t stand still. I had to touch something, anything, to stand still. Then I lost my ability to climb stairs. That took away a lot of freedom for all of a sudden there seemed to be stairs everywhere. You don’t notice stairs when you can bound up a flight without a thought.  When it means climbing on your knees, believe me, you notice. When I lost my ability to walk, I grieved heartily. I was suicidal. But, I got over it. I will get over this as well, I’m tough, but grieving is no fun. It colors your life. It’s coloring mine grey and black right now.

Loss of freedom:  I want to go to New York City for three or four days and visit the galleries.  I did this once many years ago and loved it.

I’d also like to go to Venice.  It has been a dream of mine for years to go there and take pictures.

Last week, my sister, Kathie, and I took a day trip to Buffalo, N.Y., about 50 miles from home, to do some shopping.  The bridge we took (one of three) wasn’t busy, we drove to the art store in the theatre and arts district quite easily thanks to Kathie’s navigating skills and I bought some beautiful colours in acrylic paints. We had lunch and then we were off to the Galleria for shopping. We hit JC Penny’s, Lord and Taylor and Macy’s.  By 8:30 p.m. we’d had enough and we headed north.

At the border, we were asked to pay the harmonized sales tax (HST) that Ontario has recently implemented. I had also forgotten to sign my passport.  I didn’t know I had to and signed it right there in front of the border official.  Paying the HST meant a visit to customs. It didn’t take long to part with $25 in tax although we’d already paid New York State sales tax on our purchases. That’s the way it is when you shop in the states. That took about a half hour. Then there was a stop for an egg salad sandwich on toasted brown at Tim Horton’s, then home.  It was 9:30 by the time I got home. We’d been gone for ten and a half hours.

The next day I was so tired I could barely speak.  It was a long weekend and I had planned to paint but couldn’t get off the lounge.  The day after that, I managed two hours at the easel and three hours on the lounge sound asleep and the next day after that, four hours at the easel and only one on the lounge. It’s getting better but, five days later, I’m still tired.

How can I possibly manage New York City or Venice if I can’t manage one day in Buffalo? It’s almost laughable.  The answer is, I can’t.  I’m just not strong enough for it.  My niece lives and goes to school in New York City and even she has a tough time some days. She’s only 20 and not disabled.

Loss of movement: Two days ago, a Sunday, my husband and I were out for a roll in one of the nicest parts of the city. It is just across the bridge from where we live and was built up between 1850 and 1930 or so. The architecture spans a broad expanse of styles and I love it. So does my husband.

On my scooter, my blind, deaf old poodle on my lap, we rolled around for about an hour. As we headed toward the bridge to go back to our van, my scooter simply stopped.  It registered no juice although Ron had charged it overnight after my trip to Buffalo.

Ron left me on the sidewalk and walked back to the van, drove back to get me, pushed me on my scooter into the van, and we drove home but while I sat there waiting for him it really hit me how truly helpless I am.

The scooter repairman can’t come until tomorrow.

Exhaustion after a simple day trip and then the in-your-face reality that without wheels and batteries, I can’t go anywhere, makes me feel as though my world has truly shrunk.  I liked to believe that I could go and do just about anything.  Now I know I can’t and I’m saddened by that perception.

We, who have CMT, have it in different degrees. Mine is pretty involved. My legs are gone. I can feel acutely but I can’t move my knees or anything south of them.  What I could do at 45, I can no longer do at 68.  Hey, I still walked a bit at 45.

My hands are getting really bad. I’m using two hands to grip things instead of the fingers that no longer move.  Try pulling up the bed covers when your fingers don’t work. Not easy BUT you figure out other ways to do things. They take more energy and more time but you get the job done. It’s just more difficult, that’s all.

The upside is that I live in a lovely house in a nice, clean, middle class neighborhood near shopping.  In 15 minutes I can drive to a mall with 180 stores and in three minutes I can be at the grocery store, hairdresser and three other smaller malls.  I just have to make sure my scooter is working well and ALWAYS have a cell phone with me.

There are some 80 wineries and 24 beautiful attractions around me within a few minutes driving distance and that includes Niagara Falls.  Trouble is, I can no longer drink.  Alcohol is toxic to anyone’s nervous system but what it does to my CMT affected nervous system is just awful. Talk about instant migraine and the shakes.  I still remember the wonderful aroma of good wine, and the taste… absolutely glorious.

I may have to give up my New York and Venice dreams but I’m still looking outward. I correspond with people all over the world through e-mail and this blog.  Through a search for ancestors I found a second cousin, Nadine, in Ireland, I didn’t know I had, whom I enjoy talking to immensely. Through my AccessibleNiagara.com website, I hear from tourists from all over the world who’d like to come here for a visit.

I’ve got it better than most but the wandering heart still wants to explore.  Maybe I’ll come back in another life as a world traveler or, better yet, a migratory bird.

When I pick up a tube of yellow or red paint, I’ll know I’m no longer grieving for lost horizons: real or dreamed of.  And, while I’m alive, I can still hope.  A lottery win would see me hire a limo and a private plane to take me wherever I want to go.  Money makes things happen.

In the meantime, I’ll simply enjoy where I am and what I have… non-working CMT legs and hands included… and be thankful.

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4 Responses

  1. My facebook status at one point was…..you mourn the loss of a loved one…..you mourn the loss of a relationship….but how do you mourn the loss of self?
    I am in law enforcement, something I have wanted to do as a child. Then I had no idea the horrible decease my body was carrying. Ten years ago I found out and have been able to hide it from the public. The time is fastly approaching where I will not be able to work at the job I love. I will be forced to retire, not by my age or lack of wanting to work, but rather by CMT. How do I mourn the loss of self????????

    • Bonnie,
      I completely relate to you. I just found out myself and I am 45, but I have been struggling for 12 years. Not one doctor tested me and even wanted to try. Finally I went into the office of a Neurologist and told her that I was not leaving until she found out what I had. She asked a lot of questions, did some tests and here I am. I now mourn the loss of self. I was always very active, this is going to be very hard for me and I already miss the things that I use to do. I am strong however, and as soon as the shock is over I will find a way to make it work and overcome my depression. I will find ways to overcome…..

  2. Hi Linda…..Barbara in Salem, Oregon…….thinking about you & how lucky I felt to be able to meet you & Ron on our road trip in 2013, July. We did not have much time in your area, however. Visiting you in your home & later chatting outside in your garden was just wonderful, an event I will always treasure. I am now 66 & really noticing more weakness in my legs & arms. So sad…..I worry about turning 70……hoping my kind husband will still be able to help me with everything he does now, & more. He can still grocery shop & play bridge once a week while I stay home, puttering with projects, sewing,tidying up, trying to downsize. The bathroom is becoming more difficult on my own as my fingers/hands do not cooperate. I have a bidet but still need help with undies, etc. You get it, I’m sure!!!
    Looking for some attractive dresses that don’t look too ‘old lady-ish’….
    Have found a style I like & must order that soon. Must close for now, more next time.

    • Hi Barbara: So nice to hear from you. I have a TOTO Washlet that does the trick for me every time. No more trying to hold T-paper. Let us know how the dresses are you’ve found. I can’t get slacks up either, I have no strength or grip in my hands, and Ron has to be available unless I want to drive around the house on my scooter bare-bottomed. That may be fine until the doorbell rings and then ooops! I’ll be 74 in a couple of months and we’re still hanging on together, Ron and I, and he’ll be 79 in June. I’ll write my next blog post on what it means to have a devoted loved one so stay tuned. I noticed you replied on the post featured at the top of my blog. I don’t know how to change that. If someone does please get intouch. All other posts are below my initial address. Talk anytime.

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