Find out what’s made me tick for the last 75 years – my autobiography is finally finished

Hi everyone and Merry Christmas:

After 2 ½ years of work, I can’t quite believe that I’ve finished my autobiography, CMT and Me: an intimate 75-year journey of love, loss and refusal to surrender to a disabling disease and that it’s up and out there.  It took so long because I had almost 55 years of journals dating back to 1963 to go through, 103 CMT Newsletters to revisit and thousands of photographs and negatives from family members dating back to the late 1800s to view in order to illustrate the book properly.  I not only write about my CMT but my life as a woman trying to find love and happiness and make a difference in the world because isn’t that what we all want, CMT or not?

Announce w-apple

In 330 pages, I bring to life my family and then what it was like for me to grow up in the 1940s coping with CMT.  No one knew why I was losing my ability to walk like everyone else, why I couldn’t stand still, why I couldn’t run or climb steps. Even when I was diagnosed to CMT there wasn’t much anyone could do about it until surgery was suggested. But that’s just a tiny bit of the roller coaster ride that I’ve been on for the last 75 years.  Going to school in a strange city, trying to find a job, getting married and learning about alcoholism, divorce, depression, designing a home, finding love and connecting with thousands of people with CMT around the world are just part of my story.

More than 200 photographs and graphics illustrate the 35 chapters of the book and there is a resource section that includes symptoms that can be part of CMT.

The paperback is available on Amazon.com and for people using e-readers it is also available on Kindle and Kobo. The ereader version has fewer photos but the text is identical.

https://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=CMT+and+Me

I’ve included a small graphic here (above) about the book and ask that you please send it on to anyone you know who has CMT or to those you love. It might help those who don’t have CMT understand what CMT is and how it can affect people. And, if you do read the book, would you kindly leave a review wherever you bought it, especially if you liked it.  And I’d love your feedback as well. It’s not easy to throw your deepest feelings out to the world, but I thought to myself as I was writing, if I don’t tell the truth, I’m not going to connect with the people that I want to connect with and I’m not going to help anyone see that they’re not alone as they cope with their CMT.  I hope you find my life as interesting as I have living it.

From our cozy Canadian den in the trees, I wish you all a very happy Christmas and let’s hope 2018 is a good one.

Until next time,

Linda

IMG_2914.jpg

Advertisements

The feeling of arms wrapped around me

Touch is important to all of us. When a baby isn’t touched it doesn’t develop properly. When a teen is neglected it founders emotionally and when an adult is not touched he or she doesn’t feel completely loved.

But what happens when a couple find that one of them has developed a condition whereby the other must be hands-on for showering, dressing, toileting or any number of other chores that require touch but a touch that is directed to getting the job done, not the heart throbbing?

How do you bring the caregiving spouse back from caregiver to lover or is it impossible?

I’ll put some of my possible solutions at the end but I’d love to hear your take on this.

But first, a letter from Kimberley, the letter that started me writing about something I hadn’t written about in years.

Hi Linda,

Thank you for allowing me to share my story. My name is Kimberley, I am 50 years-old and live in Brampton, ON. I was born with CMT 1A and lost the use of my legs six years ago. I’m married 26 years and have two girls.

For the first time in ages I broke down last night. I know I’m loved…but am tired of being treated like a child. I don’t feel like a wife or mother. Last night while transferring me to the commode I couldn’t let go of my husband. I started sobbing, just wanting to be held. I needed the feeling of arms wrapped around me.

I have become my worst nightmare. No longer is he my husband, but my caregiver.

Hi Kimberley – Believe me, we aren’t alone. If I open up the subject on my blog and erase our visions of the typical Hollywood romantic couple wrapped around each other in sleep (who really sleeps like that?) we’d find all kinds of couples in all kinds of situations. Trouble is, most won’t talk about it because everyone wants to be seen as having a completely normal relationship but, I ask, what is normal and what’s so important about being like everyone else? We all have needs though and some can be put aside but others, for me it’s touch, keep surfacing. I don’t mind not having sex (we’re in our 70s and have agreed it’s okay to not get too physical) but not being touched eventually gets to me. We hold hands, he scratches my back, we kiss…often. He’s never been a touchy-feely guy but he will do what I ask if he understands why. I’d like it to be spontaneous but it isn’t always. He simply doesn’t think of it. Sometimes, I just say, I need a hug. Will yours if he knows why? He may miss touch as much as you do.

Just thinking, could you transfer sideways independently to a toilet if it were high enough?

Are you using a wheelchair full-time? Scooter?

Do you have lady friends who can get you out?

Kimberley answers – I am in a wheelchair full-time and as far as getting out with friends, there’s no problem there. I have spoken to my husband about my need for touch and he says he understands and is trying to remember.

We have been through so much stress in the last seven years. My oldest daughter was hit by a car while walking across the road, at the lights, on her way to school. She suffered two fractures to her back and a bulging disc. She has become addicted to pain meds and is currently waiting for a bed to free up for rehab. My youngest daughter was raped three years ago and the guy was never caught. She ended up cutting and was in the psych ward for six weeks. She is now doing very well. Finally, five years ago I ended up losing the use of my legs and was put in the wheelchair. My hubby had to takes so much time off we lost our home and are now in a rental apartment with both girls still living with us. Talk about a loss of privacy. Once they move out on their own, hopefully it will get easier.

Unfortunately I don’t have a wheelchair van and doubt I’ll ever be able to afford one. Sorry for going on like a broken record. Just didn’t want you to think I was a whiner. All the stress has brought me to where I am today. Thank you my friend for lending me an ear.

Linda here – I have several ideas:

Stress like you two have experienced can kill anyone’s ardour. It’s a wonder your marriage has survived. More men than women leave a marriage when a spouse becomes disabled and unable to look after the family. Those who don’t take on a lot, just as women do when their spouse becomes disabled. Anyone can walk away from a marriage when it gets too hard but sticking with it means a loving commitment. I venture to say, the love is definitely there, the circumstances are just overwhelming.

Could the girls go to a friend’s place even just one night a month so you two could be alone?

Could you arrange a date night a couple of times a month so you can enjoy something, even a hamburger and fries, out together?

If it’s a two bedroom apartment and you have a room to yourselves, put a lock on the door and start getting back to what made you fall in love with each other in the first place…even of it’s just talking in the dark about what you want for the future.  Because you will have  future and you alone can make it happen the way you want it.

The independent living centres in Ontario have a program called Self-directed Home Care. You might qualify for that. It would pay for someone to come in to do a lot of what your husband does for you and he’d have more time for you as a wife. These people aren’t housekeepers, they are there to look after your personal needs but you can direct what they do, when. Worth a try.

If you have experience whereby your spouse became a caregiver and the touch became only that necessary in caregiving won’t you please reply to this entry, especially if you found a solution to put the gentle, exploring touch of love back in your relationship?

Thanks, Linda