"I'm just so darn mad," the woman said over the telephone that cold March morning. "I can't do the things I used to do, my hands won't work right., I fall and trip, and this morning I dropped a whole pot of hot coffee on the new rug. I tell you, Linda, I sat down there and then and cried like a baby. I couldn't help it, it made me so mad."
"Hey," I said, "you are grieving and very frustrated right now with yourself."
"Grieving?" she said, "You mean like mourning? I'm not in mourning, I'm mad."
"Right, and being angry is part of grieving."
"It is?" she said.
"It is," I said.
And then we went on to discuss how she felt about everything in her life at that time, and in about 45 minutes the odd chuckle was tipping into our conversation and I knew she'd be okay.

Just a refresher; the steps to grieving -- and I've added a few -- are: shock, denial, anger, bargaining, frustration, depression and finally acceptance. We don't necessarily go through all of them every time we experience a loss nor do we finish grieving each time. We can fluctuate between denial and acceptance, or nay of the stages, back and forth, for the longest time but in the end acceptance will come for most of us. I'll write about these steps as I've experienced them and helped you go through them during the past 17 years.

SHOCK - "The doctor just told me I have this thing, Marie-Tooth (most people don't get the name right from their doctor the first time, they are so shocked that finally someone has put a name on their problem and a lot of people would never ask a doctor to write something down for them) and I have to have everything you have on it, right now, I'll pay anything, I have to know right now what it's going to do to me."
Whoa, slow down a bit. First off, you are in shock, your perfect body is as you have suspected for some time…less than perfect. Now someone has put a name on what you have and you can't believe that YOU REALLY HAVE SOMETHING!

It was almost better when you couldn't put a name to it because you could put it away for awhile and forget it and say, it was all in your mind.

NOW YOU KNOW and it is real and you are in SHOCK. Some of you want to find out everything you can, so you call or write me. The questions are all the same ones that prompted me to start CMT International when my denial finally turned from black to shades of grey. What is it? What does if affect? Will it kill me? Will it hurt my children? How did I get it? Is there anything I can do? Will it get worse? Will it affect my life? Will it affect my sex life? Is there a cure? Is there treatment? Are they working on a cure? And on and on and on. Some people go into denial immediately.

DENIAL - "No way, it can't be that disease with the weird name, it just can't be. I was the one that wasn't going to get it in the family. I'm 33, everyone around me in the family who had it were showing signs by the time they were 12. The doctors are wrong, I know they are. I mean WHY ME? Just because I told them there was CMT in the family, they are saying I have it too and really I have something else. Is there anything else like CMT but not CMT?"
Sure, it's always possible that you have something else. But, if you have to have a neuromuscular disorder, CMT isn't the worst thing you could be diagnosed with. Try Friedreich's Ataxia, or ALS on for size. You'll come back to CMT every time. Also a person can have one or more genetic diseases at the same time. Just because you have CMT doesn't mean you can't have something else, genetic or not, on top of the CMT.
People who are in denial are not reading the newsletter, not helping themselves, not working with their family to put support systems in place and some are most likely pretty miserable and not too great to be around. People who are looking for answers and trying to be their own experts are reading the newsletter and have developed a support system around them by helping others understand what is happening to their body and how they can be helped if they should need help.

BARGAINING - "I swear I'll give up smoking if I could only just find out that this thing really isn't what they say it is! I'll never take Your name in vain ever again if You will just tell me God, please, that I don't have this thing." We know them all, all the bargaining ploys we use to try to spirit away something we don't want. Bargaining doesn't work because we are bargaining with ourselves and usually trying to trade away something we shouldn't be doing in the first place.

ANGER - When most of us reach the anger stage we are so angry at ourselves for having "this thing" and for being the way we are that we not only get sick of ourselves but are pretty hard to live with as well. We take our anger out on ourselves by telling ourselves that we are no longer any good for anything, by feeling sorry for our newfound state of being or in many cases by trying to prove that we are just fine and can keep up with anyone doing anything. This reaction to a disability can lead to what I call the SUPER PERSON syndrome. I know all about it, I fluctuate from the "rest and take care of myself" mode to the "super person" mode about twice a year. I know I'm doing it, I also know why I do it. I know it wears me out but it also makes me feel useful, alive and competent. I suppose I'm validating my self-worth.

When I am in my "stop, regroup and take care of myself" mode, I heal. The trouble I have is that my "super person" mode makes a lot of work for my "stop and take care of myself" mode and sometimes there simply isn't enough time for rest and restore. It is then that I find myself sick, depressed and grieving for what I think I've lost. If I take more time out and develop a balance of work and take care time, I can maintain and stay out of the grieving mode for a long time. I prefer work over any other mode but I know I must force myself to stop, rest and regroup or there won't be any work. Many of the SUPER MOMS out there should listen to what I've just said. You are cheating yourselves and your families out of a lot of the good things in life by trying to be all things to all people.

I know I had a disability and I knew the name and diagnosis by the time I was 19. I "kept on keeping on" through operations and education and work and marriage until I was 35, when I had to stop work because as a reporter I'd shake hands with a person I'd just interviewed and turn to go and promptly fall down the stairs. Not exactly what my paper wanted to see in one of their employees. I could no longer work all day, every day on a computer, my hands were going. I'd trip over telephone cords in the office that everyone knew were there but ignored. I'd get so tired by 2 p.m. that I'd almost be asleep at my computer trying to edit my part of the next day's paper.

DEPRESSION - I had always wanted to be a professional artist, exhibiting and selling my work. Slowly I had built up a roster of one-woman shows. I'd had two pretty successful ones and had three more lined up when I took a long-term disability pension from the newspaper and finally had to accept that I was becoming too disabled to actually do the work I loved so much.

For weeks I just sat. I had recently married for the second time and my new husband didn't know what to do with me. I blamed myself, my mother, everyone and everything. I couldn't live with myself and everyone else found me pretty hard to take as well. I tried to smash my hands on the glass fronts of my closet doors and only succeeded in bruising them so badly I could hardly move them. To me those hands were the cause of all of my problems, especially my inability to carry on with my painting. Deep down inside I knew no one thing or person was to blame. CMT is just one of those things that some of us are born with but at that time there were times I wish I hadn't been born. I remember saying good-bye to the green trees, the grass and the birds in my back garden. I made lists on my computer as to whom should get what in my list of possessions and found I really didn't care what happened to the things I owned, I just wanted to be gone. I was slipping into the next stage, depression and I was clearly suicidal. The only problem was, I didn't know about the stages of grieving. I thought I was alone in all of this and that it had never happened to anyone else, only me. For some reason I had to go through this hell, and it was hell.

ACCEPTANCE - My family doctor realized that I wasn't my old self and sent me packing to an $80 an hour psychiatrist located about an hour and a half from us. The psychiatrist admitted he didn't know beans about CMT but he did know about grieving and gently, except for a few foundation-rocking screams of absolute frustration, he guided me through my deep depression and out the other side to see that I was worth something, that I could still do many things and that there were many people around me who loved and cared for me. He helped ME care for ME. That was the hard part. I actually had to put mirrors up around the house so I could see ME. I had ignored ME for so long I felt as though I really didn't exist. I was something that I thought no one could see and someone I couldn't see. I simply wasn't there, my denial had been so strong for so long. I finally realized that MY CMT (when I began referring to it as MY CMT I knew I'd be okay) was only a small part of me and I really had an excuse for a darn good fresh start, if I wanted it.

It was at this time that I rediscovered my God. I was baptized and raised an Anglican but as soon as I took my first communion at 13 I left the church only to return for a wedding of a friend or a funeral. I simply didn't believe in a church that had about 20 steps up the front and a doctrine that didn't seem to apply to me. Besides, Sunday mornings were the only time I really had to sleep in and I praised God for those delicious hours of extra sleep every time I rolled over.

But something had changed. I had wanted to take my life and I was so thankful that I had been shown that I was worthwhile and that life was good that I began to feel that God had truly helped me through that terrible six months or so of suicidal depression. I felt that I had been VERY ill and was coming out into the sun for the first time in a long time. I registered at the local university to begin to find out more about what I had just been through. I wanted a degree in psychology. I didn't know it then but I was RETRAINING IN MID-LIFE. Life started to look and feel good. I started to look into those mirrors and smile. The next summer with one tremor-inducing, first ever university course behind me I began the search for others who have CMT to see if you had experienced the same thing I had. I found hundreds of you, thanks to my newspaper experience. One day, I opened a letter and a small card fluttered to the floor. I can't find it now but it was torn and frayed from being attached to my daybooks for about five years. It read something like, "I sought my soul but my soul I could not see, I sought my spirit but my spirit evaded me, I searched for my brother and I found all three."

This little verse touched me so deeply that it gave me renewed vigor and enthusiasm to keep going, to keep finding CMT people and finally, out of necessity, CMT International and the CMT Newsletter were born. I was sent that verse in 1984 and a year later someone sent me the verse Footprints. I do believe now that in thinking God had forsaken me when I was so depressed and suicidal, He was, in fact, carrying me to help and letting me see a side of life that I had to experience before I could do what I need to do now. Some of you may think this is corny or wishful thinking. I don't mind what anyone thinks anymore. I know I've been through hell and I made it. Whatever it was, it got me here and I choose to think that for a short while there I truly had The Lord with me when I needed Him the most.

I'm not a deeply religious person but I am now a spiritual person and when I have a real worry or problems I often pray for guidance and do what I've seen on bumper stickers, "Let Go and Let God." I don't think I could have accomplished what I have during the last years if I hadn't had the feeling that God is with me on this.

A professor at the State University of Buffalo at New York told us once in class that most people who have disabilities either become a vegetable…totally dependent, go nuts trying to find a cure, go to religion or become an expert. I feel that each person's religious beliefs are up to the individual. It does hurt me though to see a person waiting for God to heal them when they could be putting their support systems in place so that they can help themselves and others too. This, in my mind, is a waste of life force. However, we can all become experts and that's what I've tried to help all of us do through the CMT Newsletter. Helping you, helps me, too.

Sure I still grieve. When you have a disability like CMT that gets worse in spurts or so gradually that all of a sudden you notice something that in fact has been getting worse for years, you grieve. The denial comes back, the anger, and you shed a few tears for yourself and what you've lost. Talk it over with your spouse or a friend, and hopefully get on with life until the next time you lose something. I always said that I didn't mind what I lost really as long as I have my eyes, my ears, and my voice. On March 1, 1991 while returning from a meeting in Florida, I lost my voice. After four months the diagnoses of laryngitis, a too dry mouth and you don't know how to speak correctly, have proven false, and a new diagnosis of a partially paralyzed vocal cord has begun to fit. This isn't going to go away! I grieve my lost voice, sure I do. Some mornings I wake up and forget it's gone and then with my first gravelly, "Good morning" to my husband, it all comes back to me. But, like my husband says, "Why not?" I don't even know if it's part of my CMT or not; I'll probably never know.

When you have CMT grieving can occur over and over again with each loss but we can learn with each time that, indeed, we will live through it and come out a better person with more understanding, empathy and compassion than we had before. I was even fitted with a nifty microphone like Madonna wears when she's singing, my own battery pack and amplifier so I could continue to speak at meetings and to groups. And, after many years, I've begun painting again and am enjoying it more than ever before.

We do gain when we lose and I don't mean gadgets or assistive devices. Our gain just doesn't show until we have to draw on the very depths of ourselves for strength.

Some very good books have crossed my desk in the years I've been working with you. I'll list the ones I think will help you come to terms with your grief and help you to accept your CMT if you or someone else in your family is going through the grieving process.

Cousins, Norman. Anatomy Of An Illness. Toronto, Bantam, 1979.
Cousins, Norman, Human Options. New York, W.W. Norton, 1981.
Hodgkinson, Neville. Will To Be Well: The Real Alternative Medicine. London, Rider, 1984.
Locke, Steven and Colligan, Douglas. The Healer Within: The New Medicine of Mind and Body. New York, Mentor, 1986.
Siegel, Bernie S. Love, Medicine and Miracles. New York, Harper & Row, 1986.
Simonton, O. Carl. Getting Well Again. New York, Bantam, 1978.
Simonton, Stephanie. The Healing Family; The Simonton Approach For Families Facing Illness. New York, Bantam, 1984.