Dealing with grief
by Linda Crabtree
with notes from many sources

Spiritual or Faith
Personal faith is frequently a major source of comfort during a period of grieving. For some, however, maintaining faith may be difficult as it may seem that we have been betrayed or have nothing to be thankful or hopeful about. Either reaction may occur, and both are consistent with later spiritual growth. Talk to someone about your feelings -–your spouse, a spiritual leader or a friend. There are passages in The Bible and many books on the subject that can help.

Psychological
There is no set time limit for grieving. It varies from person to person, depending on individual circumstances. When you have CMT those around you might not even notice that you have lost some bodily function and that loss is affecting you profoundly. While you may feel pressured to put on a brave front, it is important to make your needs and feelings known by telling those you trust what has happened and how you feel about it. Everyone wants to be liked and most of us would like to be loved. Some people seem to place value on a person who doesn't talk about problems or even mention that something is ailing them. People like this can make you feel as though it is not permitted to grieve or to talk out your problems. You must give yourself permission to grieve. You are still likeable and still loveable even though you are grieving especially to those who are hurting for you BECAUSE they like to love you. You may not be the star around the house or at work, but a true friend will want to share a problem, not be thankful that you didn't bring the subject up. Everyone needs some help – don't be afraid to ask for it or to accept it.

Social
Friends and family are often most available early in a diagnosis and less so later. It is important to be able to reach out to them when you need them. Don't wait for them to guess that you need to talk or could perhaps have gotten worse and need a little extra help. They will often guess incorrectly and too late. An example of this is friends who have often asked you over to share a meal and you have always returned the invitation. As your CMT gets worse you find climbing the steps to their home increasingly difficult and you can no longer use their bathroom which is upstairs, so you must go home earlier than you would like. Instead of expecting them to guess the reason for your early departures or declining their invitation, talk it over with everyone concerned and chances are a solution can be found that will please everyone. Best of all they will feel even closer to you because you were brave enough to share your problems with them.

Not everyone understands a disability and some people are still wary of one especially something called Charcot-Marie-Tooth disease. The first thing they do when they hear the name is look you straight in the teeth. Be brave and patient enough to tell them a tiny bit about it. Do not avoid social contacts because of the imperfections in those you meet.

Sometimes, in an effort to stop the pain of grieving, people turn towards trying to regain what they've lost or to make up for it in some other way too soon. Find out what you can do with what you have left before you try to get back into what you did before, as trying to regain lost function can make the CMT worse overall. It is hard to evaluate new activities objectively if you are still actively grieving, and this kind of solution may only lead to other problems and possible injury. You'll be trying so hard to prove to yourself and everyone else that you can still do as much as you once did that you could really exhaust yourself. Moderation and pacing is the key for people with CMT.

Try to make clear to children that sadness and curiosity are perfectly normal. Neither has to be hidden. Lost function for which you grieve can also take away functions that made you closer to your child, e.g. being able to lift and hold or carry him, being able to toss and retrieve a ball, to tie his shoes or fix her hair in pigtails or bows. The child notices the difference and should be told that it isn't anything he/she did, it is something that is wrong with mommy's hands and we'll try doing it differently instead of the old way which is not longer possible. It is important that periods of happiness are enjoyed and that having fun is never interfered with by the disability. There are always ways around something, you just have to work a bit harder to find them.

Physical
It is easy to neglect yourself because you don't much care at a time of grief and find your body more of an enemy than a friend. Try to eat reasonably even if it is difficult and the eating process reminds you that your hands aren't working as well as they once were. Look into support systems and contact an occupational therapist (OT) if you think there must be something out there that could help you do the function you've lost but you simply don't know where to look. An OT will know. If you've lost some of your walking ability don't give up walking altogether -- walk less or fewer blocks. See if a cane helps, but make sure you get professional advice on the right height of cane, right handle, grip on the floor and how to hold it. All of these facts mean a great deal when you start using a cane. Try an adult-size three-wheel bicycle (they can be a lot of fun) or look at purchasing an electric scooter. You still need to get out, you still need to interact socially with people. Just because you can't walk doesn't mean everything else has to stop.

If people urge you to see you doctor, do so, even if it doesn't make sense to you at the time. You could be showing signs of deep depression that you don't even know are happening but are being picked up by those very close to you.

Economic
Avoid hasty decisions. Try not to make major life decisions like selling a two-storey home or moving to a warmer climate just because you've had a reduction of function. Give yourself time to first try to adjust to the new loss and then, if everything points to a move or a new home or new car being what will really help, do it, but make sure you've figured out everything you can about your loss and know what you can and can't do.

Millions of dollars every year are wasted on orthotics, assistive devices and other aids for daily living because people who are newly grieving reach out for help and buy something they feel will help instead of know will help. A great deal of money is also spent when people don't give themselves enough time to think things out carefully. If money is no object then sure, go ahead and try things but for most of us, a major change means a lot of money, time and stress.

In general, most people find it best to remain as they were, grieve a loss, learn to accept it, find out all they can and then go for help to restore lost function. That help could also mean a change. Major decisions can often make things worse but they can also sometimes make things so much better you can't believe you ever waited so long to make the change. Consider your future and what you want to do calmly with your mind and your heart but mostly with calm rational thought. Your life isn't over because you can't walk much anymore or because your thumbs won't work or you can no longer hold a cup. Necessity being the mother of invention we have some very sophisticated bracing available as well as canes, wheelchairs and electric scooters.

Aids for daily living, or ADLs as they are called by professionals, are a multi-million dollar business in North America. If you need it, chances are it's out there, you just have to find it. As for holding a cup, I can think of 20 varieties of cup handles available and don't forget the good old-fashioned straw. A lot of good people with CMT manage pretty well without walking much and/or without the use of our thumbs but you have to find all of this out for yourself. Give yourself time and don't be afraid to seek good advice. Usually it is wise to get more than one professional opinion before making decisions.

Hope
You'll notice that the first item mentioned in this article was spiritual or faith. Faith, hope and charity are healers. You have to have hope. Hope that someday research will find out more about CMT and will perhaps be able to stop it, if not in our children's children, then in further generations to come. We have to have hope in a world that seems to be saying to those of us who have disabilities, "Come on out and join the rest of us," as we make everyday life a little easier through better science, better health care and better accessibility.

We have to hope that, "the powers that be," will listen when we tell them that what we are feeling isn't what we are told is happening. We have to pray for open minds. We can't sit by and just let people tell us or do for us because we find ourselves with a disability, we must dive into the fray and try to do our part by promoting awareness and working towards better understanding. You'd be surprised how many, including those in the health profession, think you are totally helpless and cannot comprehend basic science just because you can't walk. We've got to change those notions for everyone who is disabled.

Charity
Charity begins at home. It really does. If you look after yourself and treat yourself well, you then have the reserves to go out and help others. Charity doesn't have to be in the form of money, It can be time spent helping, advice given when requested or experience shared with someone who hasn't learned what you have in a lifetime but knows something you don't know. We learn from everything we do and often when we are grieving, helping those out who seem to us less fortunate than ourselves actually lets us see that because of their attitudes they are more fortunate than we are. Being at peace with ourselves is really what it is all about. If we can learn to accept what we have, live with it well and then go on to help others, we are truly doing what we were meant to do on this earth, disability or not.