What I Miss the Most
Someone asked me what I miss the most since being diagnosed with Charcot-Marie-Tooth disease (CMT). I had to think hard about it, as I’ve had CMT for as long as I can remember. Has it always been this bad? No, it has definitely progressed more than I would like in recent years.
I cannot do many things because of CMT, but most of them I do not miss. I cannot run a marathon, and truthfully, I probably would not even if I could. I cannot go rock climbing, but again, that is not something that interests me. Can I go for a long walk in the woods? Probably, but I would need a walking stick or my cane. I likely would need to rest or take a shorter trail. Due to CMT, I cannot really play sports, but I never did before, so it is not something I miss.
I miss being able to go into any shoe store and buy reasonably priced shoes. To be honest, I never really could do that. I always needed wide shoes with good support. It was always hard to find cute shoes that fit the bill. However, since getting ankle-foot orthoses (AFOs), shopping for shoes is much more difficult. I do miss wearing sandals in the summer. AFOs, socks, and shoes get really hot in the summer’s humidity, and then my feet, shoes, and AFOs get kind of stinky. Alas, this is one of the many joys of having to wear AFOs.
I miss dancing. My sister and I took dance classes until we moved from Staten Island, New York, to New Jersey. I always had fun at dance class, even though I was not very graceful. I actually miss going out with friends to dance, not that I was ever very good at it, but it was always fun. I do not have the balance to be on a crowded dance floor nor the ability to do much once out there.
What else do I miss? Actually, I miss being able to do everyday things without having to worry about how. I know that if I go somewhere that involves a lot of walking, I must plan how to navigate it. Will there be benches to sit on and rest? Can I navigate the crowds with a cane? I also have to think about the terrain and whether I can walk safely on it. I miss not having to think about those things.
There are ways that my life has changed due to CMT, and there are definitely some things I cannot do. I may miss them now and then, but for the most part, I really don’t even think about what I cannot do. When I was asked what I miss the most, it was hard to say. When push comes to shove, I miss having energy to do all the things I need to do. I miss not having to take a nap after running errands or cleaning the house. If I could change one thing about CMT, I think it would be the fatigue, the feeling of never having enough energy to get things done.
What do you miss the most since being diagnosed?
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Note: Charcot-Marie-Tooth News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Charcot-Marie-Tooth News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.
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Comments
Ran
As always, agree with every single word
Jill Price
Thanks!
Cindy
Hi Jill - Even though diagnosed with CMT1A, I was very lucky in that I didn't think I was "affected" in any way. I was able to wear heels, pumps, platforms, boots, etc. I had a shoe fetish as reflected by how many pairs were in my closet. I assumed everyone struggled to maintain balance as I did. I didn't think it was that big a deal that I couldn't run very well, or fluidly run down a flight of stairs. I had to take each step one by one as my tight heel chords wouldn't allow anything else. In 1995, I developed a left drop foot. I still manage without AFOs - but my gait is "off" & negatively affects my lower back & hips. I have been avoiding AFOs for years now. I had the typical rigid plastic AFO in '95 & HATED IT. It didn't fit into any shoe I would ever wear. So I've done without since then. But as I age, I wonder if I'm doing myself any good without it. I've told myself - who cares what the world thinks. I'm a smart person - do what is best for me. My hubby accepts me for ME - no doubt he wouldn't be embarrassed to be seen with me wearing an AFO. But I cannot accept it - WHY (rhetorical). I "get" you! Somehow it damages our self confidence, our self esteem. My wardrobe becomes limited b/c of the shoes I can/cannot wear -that probably sounds so ridiculous to many. On 1 hand, I am thankful that I can walk on my own 2 feet - no matter how awkward. I am thankful I do not need a wheelchair. I am thankful I am still able to ski - the boot locks my feet in - acting as its own brace. Yes - I am thankful - but I also grieve. I grieve the loss of the ME I used to be. It is not always omnipresent - but it comes & goes. I see what CMT did to my dad, physically & emotionally, and yes - I am thankful that I do not suffer the way he did (may he RIP). It just sucks! Hang in there Jill - we don't really have a choice...
Jill Price
I can appreciate everything you said! It is not easy but knowing we are not alone helps! Keep on keeping on!
dobes
Your comment made me laugh, as so much of it is me! I was diagnosed at 13, underwent 7 operations to stabilize heels and feet and remove toe joints in my teens, and was told it was unlikely I would be able to walk without crutches from then on - which proved not to be true. I was out of school and in the hospital most of my teenage years. Still, from 18 to mid-50s, I walked fairly normally and without aids, experiencing only problems with balance, which I corrected for by keeping my eyes on the ground when I walked and my hand on the railing on stairs, falling only occasionally. I also had pain in my feet and legs, always present and sometimes severe, which I tried to keep to myself outside the family environment.
Every year, I am grateful when winter comes and I can wear stabilizing over-the-ankle boots, and less happy with summer footwear - my toes are so twisted and feet so knobbly that I would not wear sandals - but otherwise comfortable sneakers still do not support my weakening ankles, and I cannot walk as far in summer shoes as in boots.
And yet, I still resist AFOs, like it will make CMT "real." I'm not yet sure how to completely acknowledge it and yet keep my image of myself and self-esteem intact, after working so hard as a teenager to get off crutches, and appear able-bodied. And yet, this article's account of becoming pain-free with AFOs made me sigh - I would LOVE that after all these years.
If any of you reading this hasn't seen "Special" on Netflix, you should give it a try. It's a story in 15-minute segments of a young gay man with mild CP, maybe on the order of many of us with CMT or a little worse. It does deal mostly with being gay, but when he talks of being able to "pass" as able-bodied, or is happy to explain his limp as the result of a car accident, it makes me laugh - it's so true. It's something many of us have experienced, but that we have never seen represented on TV.
Jill Price
Thanks so much for the Netflix recommendation! I will check it out.
It is nice to know there are others going through the same craziness! I know it is hard to face AFOs, but it may be worth looking to. Wishing you the best!
Pamela
I stumbled among this website. I am a teacher, mom of 3 kids. A teacher noticed my 12 year old son had an odd gait. I always noticed it, him stomping his feet when he walks. Just that it was growing pains. We took him to the podiatrist and he suspected CMT. What I said? Nothing like this in the family. We were devastated as he is an amazing baseball player and happy go lucky kid. He's been to the neurologist, had the nerve test and we just did genetic testing that I am sure will confirm CMT. Since he was diagnosed on the later side and sometimes he looks normal, they think it is slow progressing. But in reading about it more, it scares me and what life will be like for him. At this time his feet muscles don't work and he has the drop foot, hammertoes at times, and spots of numbness. His nerve test did not look to good as some nerves aren't working. I am hoping for a treatment plan for him to keep it from progressing too bad. Thank you for sharing your stories. I had never heard of CMT and I never thought anything like this could happen to my child that always seemed normal to me.
Jill Price
It is a lot to deal with but there is so much research going on right now. Things can be tough but it is manageable. I wish you and your son the best.