Charcot-Marie-Tooth: Adjustment, Acceptance and Daily Life

Welcome back to my final chapter of my story of my life with CMT. This is a great deal longer because I had to combine two posts to fit within the month of September but the two post really do go hand in hand for the first part is about how I accept the CMT and what my daily life is like now with it. This might seem strange to some but this hopefully will show how I look upon my life now as a blessing even, or maybe it is because of the Charcot-Marie-Tooth.

One of the first blessings that I realized that has come from my having CMT and the fact that I had no choice but to go on the government roles like I did, was that I was blessed to be there for my son as he was growing up. It took a little while to see the positive blessing in being on welfare and Social Security but I did and now I am grateful that I had a chance to be there for him. I was able to teach my son all those little things a child learns growing up instead of seeing what he what he was taught by another persons hands. Those are memories, moments and years that I would have never have been able to get back if I was in school and working 40+ hours a week to support my son. I know that there are plenty of people who do miss those moments and my heart aches for them for I was blessed to be there for my child when so many parents couldn't. Sure I miss those times and moments, but not because I missed out altogether but because of how precious those times were to me.

Another blessing that I discovered along the way was that though I was disabled there were things that I could still give back to society. See when my son started school, I still was hoping to go to work to support my child but I knew I had to be creative in getting some experience in something that I would be able to do for long term. It was actually during this creative time, I discovered that I could find job fulfillment in a job that most would not think about since there is no possible job advancement, but yet I loved that job. So what creative way of getting experience did I end up loving, well I volunteered to work as the Secretary at my Church since it was just the Pastor at the time. I had approached my Pastor to see about just volunteering for a year so that I could get experience and work history that so many employers were looking for.

By the time the year was up, I was in love with the job for I was giving back to society, maybe not in ways that people expect but I was filling a job that was needed and that I loved, and two, I was offered the job beyond the year and getting paid. I jumped at the chance though I knew that I was going to have to remain on the government roles for I wasn't being offered a lot, but by this point I realized a few things. One I may not have been supporting my little family on my own, but that didn't mean I wasn't being productive for I felt that I was within my abilities. That is what it really came down to at this point in time of my life was within my abilities and I was learning to accept those abilities to work within them.

I may not have had a job month in and month out over the years, but I was okay with that. I taught my son that he needed to work and work hard when he got a job, but know what his limits were should he ever develop CMT himself and should he develop it then I have also shown him how to still be productive in society. To me that was the biggest thing I needed apparently for that was when things started changing for me though those changes were not done over night and took time, but in started to accept everything as the way they were was a start in the long journey for me to accept my CMT. When I was not volunteering or working for pay, I was still doing my best to help others out to the best of my ability. Honestly I have worked as much as I could over the years but finally in 2007 I realized just what a waste of time it would be for me to find a paying job anymore.

Before anyone starts throwing peanuts at me for that last comment, please understand that I have a reason why I say it would be a waste of time for me to get a paying job. The last paying job I had around the holidays in 2007, I was hired on for full time position, but after a few weeks, I realized that I could not stand on my feet for 8 hours a day, whether standing in place working behind a cash register or on the floor walking around stocking shelves. I went to my managers to quit for it wasn't fair that I was hired on as full time but couldn't do the work I was hired on for. I offered to quit because by law they couldn't fire me and that wasn't fair to them for employers hire people to fill a need and I firmly believed that it wasn't right for I felt as if I was being dishonest with them for I said I could do the work only to find out apparently I couldn't. I lucked out though, for someone who was hired after I was, and hired for only part time though she really hoped for full time, and that is how I lucked out. The managers didn't want to loose either one of us so they moved her to full time and me down to part time, which I was happy about for I really didn't want to quit with the holidays coming up plus trying to save money for a move I was planning. It was that job that made me realize that it was not fair to future employers any longer, because there was no promises about how long I could be on my feet and what would happen when the weather was bad.

So instead of looking for paying jobs I now look for volunteer jobs for I have found such pleasure and enjoyment in the various volunteer jobs I have had over the years. I have worked in a Church office (a second Church) and now I volunteer at my local Pregnancy Resource Center. I find volunteering in a place where I am needed is a pleasure and I love the knowledge that I am helping in some small way, even if it is just making life easier for someone else who are overworked themselves. It is that knowledge of helping even in a little way that makes it so pleasurable for me for I am giving back to society. I so hope that by my constant trying to be there for others, by constantly trying to give back to society instead of being a drain on it and that when you make a commitment that you stick it out, is something that I taught my son. I have been blessed to see how my son works now and somehow I must have shown him the right way for he is always giving his best to his employment.

I have also learn to count as a blessing my actual disability for who else can understand the challenge of a physical disability or illness. Sure disabilities and illnesses range from almost non-existant to severe but only one who faces challenges daily can understand the struggles others might be feeling. I often point out if I can do something then those without a disability or illness should be able to do it when they just want to give up, and that often brings a smile out of the person I am talking to. I may not understand everything but I know enough to know that those in a wheelchair should not be ignored, though honestly that happens far too often. For whatever reason when I a person is a wheelchair, someone standing will look at them and then proceed to ignore them completely as if they are not there in first place. I have been in this position and seen it first hand when looking for help I was overlooked by the person approached as they looked at me then proceeded to ask the person I was with, who was standing by the way, what they could do to help them. When I was able to work or when dealing with a couple, and one is in a wheelchair I tend to deal with the person who spoke to me and make sure I include both when I talk to them.

Another blessing is the pleasure I have finding different and unique ways of perplexing people especially after a serious fall. I have to laugh at myself after a fall, especially when I am around a bunch of strangers, for it is easier to laugh than to feel embarrassed or to look at the pity in their faces. Humor now a days is just one of the ways I deal with my CMT for it is a great ice-breaker, for it almost seems to makes others around me more comfortable with asking questions that they might have, especially after a fall. I have been able to laugh my way through countless ER visits, twice being taken to the ER via an ambulance because I couldn't get up on my own, countless x-ray sessions (for I wanted to just make sure I didn't break any bones), numerous managers who have had to fill out accident reports because I had fell within a store, and through the hundreds of falls that had been taken within a crowd in public.

I have also had the pleasure of confusing doctors because of my humor. One doctor, when I was in my 20's, was bragging about how he could get a reflex out of anyone, no matter how hard it might be and I joked with him by saying, “Wanna a bet” and I walked out of the office $5.00 richer. I was only kidding about the bet, using the humor to make the mood lighter, and really didn't want the money; but he was insistent that he lost a bet when he was too cocky about being right. He also claimed that he learned a lesson that not everyone is the same so he couldn't make the claim that he could do something that might not be possible. I have made doctors take a second look at the paperwork that I fill out, for I have to put down that “It's my Dad's fault” in that line where it asks about what the problem is or how long I had said problem. I have been able to get chuckles out of doctors and nurses with that line as well. It is humor that I use to make it through the countless introductions with doctors and other medical professional's and it seems to help put them at ease as well so that we can get to the root of the problem just that much faster.

When I have lost the ability to do something I have enjoyed, I have been blessed enough to find something new to occupy my time. I have enjoyed crocheting, counted cross stitching, quilting, plastic canvas, but slowly those crafts have been something I had no choice in giving up but I still have wonderful memories and mementos from those times. Right now crafting is not something I can do or maybe I should say that I have not found a new craft that I can do but I have been enjoying a new hobby which is reading. I find that reading is actually a great way to relax while taking countless vacations at no cost. Sometimes I wish that I could pick up a crochet hook and work on another blanket or be able to piece together another blanket to sew but it is what it is and no point in wishing and hoping for something that is not able to happen. I have the knowledge that some of the items that I have made over the years are still in the hands that the gifts were made for and they are still being treasured.

Accepting my limitations and disability has not been easy but at the same time it has been freeing. Freeing in a sense that in accepting my limitations, I don't feel as if I have to do something that is way beyond my ability to prove myself to anyone, for I am who I am. I can be free to be exactly who I am with all the humor and other emotions. I can be free to get angry at not being able to do something for a moment or to laugh at the latest graceful fall I have taken and everything in between. I also feel freer because by fully accepting my disability then it almost seems as if everyone else just accepts it and me as is without any problems which in a round about way, I have finally found the thing I longed for as I child. I was finally just like everyone else it seemed. It is easier being honest about my disability and accepting it for when I say I can't do something then no one around me even thinks twice and they accept that completely.

Accepting one's limitations is not easy and I wont even try to say that it is, for it is really hard to fully accept when one can no longer do what they once were able to do. To get to the point of accepting things that are now different is something that is personal to everyone and there is no time limit but I do hope that all who get to the point of acceptance of their disability will find the same freedom I have. I have also found freedom in being able to accept my disability when it comes to the medical aspect of it all.

I want to say that I am still pretty active in my life for I still can do quite a bit yet I know that I have slowed down from when I was in my 20's and 30's. I get out of the house regularly, and when I am running around too much I make sure to take a few days to recoup. I do read a lot as I said and that is something that really fills the times when I do have the down time. I may not be able to go for as long as I use to either so at night I am about done in completely so I take it easy in a fictional world. I have to say that I am more active in the late spring through the early fall for the cold weather is where I draw a line. Once snow and ice start falling I take even more care about going out since snow and ice seem to be out to get me in new and interesting ways. I prepare for my winter in home times with plenty of books, food so I don't have to worry about getting out for the little things and whatever else is needed.

I prefer walking around barefoot within my home, and outside of my home if I could. I choose not to go barefoot outside because I can not always lift my foot which tends to lead to the stubbing of my toes which then leads to an infected toe. So I must wear at least socks when going outside for a short period of time or while in grass and shoes for any great length. Because I don't like wearing shoes, especially while inside, each night I must carefully look my feet over in order to make sure I haven't cut my feet on anything. I know from experience that I won't always know when I have an infection starting or how bad it might get before I might actually notice the pain if I do at all. This is why I must check every night, and when something is different about my feet, such as a bruise that is too close to the toes, I have it checked out to make sure that everything is okay for I wouldn't even know if I broke a bone.

Cleaning the house is not just as easy as it use to be for grabbing a sponge and holding with enough force is not enough anymore to be able to scrub where I need to do. Yet, that doesn't mean that I have stopped doing what I must for I have recently found a scrubby that has a handle on it at my local Walmart, which is perfect for I am able to grab it and do what I need to do without too much of a problem now. There are other little things that I have had to adjust to over the years. I use scissors a lot within the kitchen to open various bags for I just do not have the strength to rip them open any more without throwing the contents all around the kitchen. To open cans I try to go with the pull tab cans as much as possible and then to pull those tabs I use needle nose pliers to help get the leverage needed. I also use needle nose pliers to pull of the protective lids on jars and bottle for I just can not pinch well enough to pull them off without assistance.

Often I have been able to find other and unique ways of getting something done that I can no longer do, but when something is beyond my ability I ask for help. I learned long ago that my pride can suffer worse by not asking for help when it would have saved time, and energy to simply ask for help in the first place. At first it was far easier to ask family for help, especially my son, but now it is just as easy to ask friends for their help. Now after getting comfortable in asking for help from family and friends it is now getting easier to ask for help from even strangers, even knowing that I am going to be looked at strangely. I have to say that when asking for help from complete strangers, 9 times out of 10 they are gracious about helping though I still get the looks of pity. I don't allow those looks to get to me for I know they just don't understand and well at least they were willing to help in the first place.

Over the last decade or so whenever I am out and about in the winter time, there is something I am never without and that is my forearm crutches for they give me confidence in keeping my feet under me most of the time. Those crutches are something that I use to help maintain balance and will use them when I need that extra little bit of help because maybe I am tired or hurting. Over this past summer (the summer of 2015) I have come to the conclusion that as much as I might not like it, when out and about I need to use at least one crutch even throughout the summer time. By using at least one crutch outside of my home, I find that my balance is a little better which means not as many falls, always a bonus there. Since I don't have much choice in using the forearm crutches I decided that I didn't want just plain silver ones anymore but pretty ones that might stand out a bit more, so I started using decorated duct tape which you can see pictured.

Over the years there are choices that I have made go against doctors orders, and for that I have had to deal with the various consequences such as lectures from the doctors, and being a little more tired at the end of the day. One of the biggest things I have gone against doctors orders is that I don't wear AFO's. I understand what the benefits are from wearing them, I have better balance, more ankle support and so on and so on. I know all the benefits but frankly with all the drawbacks that I feel that I have from them I just don't feel that the benefits out weigh the drawbacks. What do I see as a drawbacks, are just what they are to me for I am sure that most people don't see my issues as a drawback and wouldn't give up their AFO's for all the money in the world. To me, those drawbacks are that I feel more unstable and more likely to fall and break a bone. Also because of the way my left ankle rolls out, it puts so much pressure on the brace it bruises the inside of my calf near the knee, which after a while that bruise would hurt a lot. Just because I don't wear AFO's does not mean that my ankle does not need support for it does and for that support I wear a maximum ankle support brace. I have to get a new one about every four to five months but it seems that with the flexible plastic insert on the side it is just what I need for support without bruising my calf.

Also I have chosen to not to have my ankle fused together. The idea of my ankle being forever in a 90 degree permanent position was something I couldn't imagine and still can't imagine. To me the idea of having my feet like that was asking for the muscles to atrophy faster, for when I got out of the casts after each surgery, I noticed a bit of atrophying and the muscles never bulked up again. If muscles, at least mine, could atrophy enough that I noticed them in just 6-8 weeks then what would happened over a lifetime. Personally I believe that I would have been in a wheelchair far sooner, like years ago instead of only using a scooter for long walks as I do now. To me the fused ankles were and are not something that I would ever see happening.

Lastly I wear shoes that each and every doctor has told me is the worse thing I can wear. I wear flat, no arch support, no ankle support, canvas shoes made by Keds. These are the only shoes I can wear because they are light weight and have no height what so ever to their sole that would help twist my ankle. I deal with the lectures because I can't wear anything else, and though I understand where the doctors are coming from, I also know that wearing the shoes that the doctors think is for the best are just too heavy for me to wear so I will wear what I can.

On a daily basis I try to be productive to the best of my ability so that I am not a drain on society, and to take care of myself so I can do it all over again the next day. I try to be a positive role model for my son, who though is an adult, still needs to see how to face the challenges of life with a positive outlook and to see how a good work ethic regardless is the best thing in life.

I want to thank everyone who has come back time and time again throughout the month to read more of my story. Please feel free to ask any questions and I will do what I can to answer the questions.