Grieves for niece
by Sandra J. Mineo, C.S.W.

I and both of my brothers have CMT, inherited from our mother, I went to the local MD clinic with my niece, Diane, her mother (my sister-in-law) and her grandmother (my mother). Diane is getting married, so we thought it would be a good idea for her to have an EMG (electromyogram) and genetic counselling. To me it was an outing, a reason to do lunch, since in my mind Diane had escaped from CMT. I was little prepared for those fateful words when, not five minutes into the EMG, the doctor said: "Yes, Diane, you do have it." I felt as if I'd been physically punched, yet my emotions were quite numb (consciously to protect Diane and unconsciously to protect myself). I was so very shocked, yet unemotional. There had been signs of CMT. Diane could not roller skate, jump or run fast. She had pain and cramping. Last year, she was no longer able to wear high heels. Somehow, I shut these facts out or ignored what they really meant. I heard myself saying things like, research will soon have a cure and Diane will have a mild case. I minimized everything and reassured Diane all over the place.

I'm not insensitive to the fact that my niece is the primary person here. She, her mother, her father (my brother) and her grandmother are in a sense more important than me. They will each experience their own grief process. But, since I cannot speak for them, I am reporting my own reactions.

To hear that my beloved 20-year-old niece, whose life is just beginning, has CMT caused me to feel great pain for her. I feel this because even if CMT turns out to be mild, she'll have some kind of symptoms. She'll at least worry about it and make decisions that take it into account. It may affect her career (which requires physical strength). She'll have to rethink her wish to have children. I hurt for her, too, because of the limits she already has (now that I've faced them). Old feelings of grief for myself were also reactivated for a short time. I've been thinking about how I would do anything to spare my niece pain or struggle. If I could, I'd choose that I get worse instead of her. This astounds me. This is how mothers feel for their children. I'm probably feeling a fraction of what a mother feels, yet it worries me, and it also hurts beyond all description.

I saw both of my nieces a lot while they were growing up. I feel guilt in looking back at times when I complained and whined about my feet hurting or about how I hated wearing weird shoes. What kind of a model had I been for Diane? I felt guilty, too, for remembering how I'd sent her to a counsellor when she had anxiety symptoms, because I was thinking she had family and other personal problems instead of picking up on her hints that she was having CMT symptoms and she was scared.

Since that day I've cried, sobbed, talked, expressed fears, guilt and loads of anger to family, friends, husband and therapist. These feelings I experienced weren't clearly and neatly packaged and presented. They came and went. They were often jumbled and mixed up with one another. I know there is more to come, but I feel much better and far more hopeful. Now I have room for the hope and energy to be there should Diane ever need me.

The major stages of the grief process were shown in the true story of my niece being diagnosed with CMT. To learn that you or a loved one has an illness is a loss. There is a natural grief process that follows from any loss. A loss can be anything you had which you now don't have or something you wanted or needed that you didn't get. This doesn't mean only material things. Anything that brings a change (even a good one) is a loss and causes grief. The change can be big or small, good or bad, chosen or imposed, partial or complete, temporary or permanent. If the loss is small, the process is just shorter and less intense. But, a series of even small losses can accumulate. And, present-day loss can trigger feelings and reactions from past losses even if the actual memory of the past event isn't there.

Often, people don't define a loss as such and don't even know they are grieving. Since people need to make sense of what they experience and since feelings must be acknowledged and expressed out loud in order for us to feel better, it would be helpful to know about the grief process. There is much more to this process and it takes much longer than most people realize. It includes feelings, behaviors and actual stages. The feelings stay in us until expressed and they get expressed indirectly if not dealt with directly. These various stages are not clear and distinct. They can overlap and one stage can repeat itself until it is resolved, that is until it is expressed enough and the person lets go of it and perhaps replaces what is lost in some way. True, each one of us has some personal style of grieving and we each have things that have meaning only to us, but there are certain behaviors and feelings that happen to most grieving people.

There are many more reactions than the famous five stages of grief listed by Elisabeth Kubler-Ross in her studies of dying patients. But, since these are brief and can be applied to any loss, I will mention and then add to them. They are: shock and denial, bargaining, anger, depression and acceptance.

When a loss occurs, we don't quite believe it. For example, in spite of my niece having clear and classic symptoms, I denied that she had CMT. The thing about the denial stage of grief is that it really works. At first, a loss is just too much to take in. This can last a long time or return at certain times (as when, just for a second, we think we see a friend who has died). We fight the fact that we have lost, will lose, or are losing something. In fact, we have an actual biological drive, or compulsion to get back whatever it is. If it is not possible, this drive may be expressed or acted out by pacing and agitation or in compulsive behaviors. Examples would be driving by the house of your ex-lover or calling him/her even when the relationship is clearly over, or getting endless opinions following a negative medical report. Everyone wants a second chance or better deal. This is part of bargaining and what one writer calls Searching Behavior.

When we begin to see the loss as true or when it actually hits us as real, we are distressed and hurt. Crying is a biological necessity as are expressions of anger. In grieving major losses, we regress for at time and must lean on others. Other feelings that occur are those of guilt, shame, regret, worry, anxiety and loss of self-esteem. These feelings don't always have to be rational or make sense. At times, we also become depressed. There is very little emotion or zest for living or interest in anything during these periods. We just feel empty and slowed down during this depression stage. Eventually, we consistently face the fact that loss is true, and we have completed the feeling and behavioral work, and we begin to rebuild our lives in ways that are necessary so as to live without whatever we have lost. We make substitutes and regain energy for things suspended during the grief process. We can now move on.

Now that we have discussed the grieving process in general, let's apply it to CMT. What if the loss is ongoing, intermittent and/or chronic as in degenerative illness? With CMT, we live with threatened possible loss or our losses are often so gradual that they're hard to pinpoint. There is a loss each and every time a change occurs, so we must go through the grief process each time. Living with threatened or limbo (not here yet) losses is extremely difficult. It causes a great deal of stress. A loss may be hard to recognize until something happens to point out to us that things have changed. Every autobiography in our newsletter mentions things one used to do that can't be done anymore. Anytime we have physical pain or limits, anger is the natural result. The anger stage in grieving is crucial to adaptation and acceptance of illness. And this anger must be expressed intensely, out loud and even in a physical way at some point.

Now, what resources help us to do this grieving? How we and our families respond to a disease like CMT is as important as the diagnosis and symptoms themselves. A person can be in chronic denial or can minimize so that they make unrealistic decisions or spend a lot of energy trying to hide their limits. Or one can turn the illness into an obsession and not only limit themselves too much but also avoid other important issues in their lives blaming everything on CMT. Either minimizing or making too much of an illness is due to avoiding the grief process that has been described here. Anything can be accepted and lived with if it is grieved.

When a family member has an illness, the whole family is affected by it. A family can avoid the realities and reactions concerning the illness or can deal with them in an open supportive atmosphere. How lucky are those who can talk about having CMT when they wish to do so but who are also encouraged to be independent!

There is a great deal of difference between true acceptance and bitter resignation. True acceptance occurs when the stages of grief are fully dealt with. The rewards following grieving are profound and real. We have grown, we have learned a great deal, and we are better, richer, more mature and interesting people. We adapt. We accept. We never lose hope but we can move on with our lives. Such a loss can also bring families closer together.

I know my niece, newly diagnosed with CMT, will be okay because she has the resources (inside and out) to grieve any loss that may occur.