What Living With Hope Looks Like for Me
I’m sure most CMTers will agree that Charcot-Marie-Tooth disease (CMT) often sucks. It can feel like there’s nothing redeemable about living with this chronic condition.
CMT wears away at our physical strength and stability, leaving us accident-prone. It alters the body in unexpected and undesirable ways. It drains our energy and mobility, often ruining plans as a result. CMT causes frequent and unwelcome physical pain.
It’s important to acknowledge that many CMTers are struggling, sometimes even beyond what I’ve mentioned here. Health issues aside, it’s impossible for every day to be bright, cheery, and full of joy.
And yet, I believe it’s equally important for others to know that many of us persevere and strive to maintain hope. It’s important to treasure and appreciate hope so that we may live full and meaningful lives.
But what does that actually mean, and what does it look like day to day?
As with everything, it varies between individuals, and depends on what kind of hope we each nurture. Following is what hope looks like for me.
Hope for a treatment and a cure
I hope that we will soon see a cure or a treatment for CMT. I don’t think it’s a matter of if, but when. Maybe it’ll even happen in my lifetime.
Even if it doesn’t, sustaining this hope means that I follow CMT news and research developments with joy and excitement.
This hope inspires members of organizations such as the Hereditary Neuropathy Foundation, the Charcot-Marie-Tooth Association, and the CMT Research Foundation to continue their advocacy work. I appreciate any opportunities to participate in this movement.
Hope for societal change
I also believe we can foster a more accepting, caring, and empathetic society.
Because of this, I believe it’s always worthwhile to write and talk openly about CMT and disability. It’s important to stand together, network, and connect. In doing so, we can help each other, care for each other, and fight for each other.
I want to push back against problematic narratives and ableism when I see them. I want to be a part of the positive changes that we are collectively manifesting.
Hope in life and love
Finally, hope for me means having faith that every day brings opportunities to offer and receive love in different ways.
It’s striving to continue to work toward happiness and wellness. And it’s the belief that there is more to see, feel, do, and give — that every moment allows me more time to savor every offering of kindness I’ve been blessed with.
I try to remember my hopes as I pull myself out of bed each day. They encourage me to take care of myself by maintaining my workout routine and eating nourishing food that will benefit me both emotionally and physically.
Because of hope, I don’t shy away from metrics of my CMT progression, and instead try to be the best version of myself possible. I want to do what I love for as long as I can while remembering that my value doesn’t stem from my physical abilities.
I don’t succeed in this every day, but it’s what I shoot for. I try to keep these things in mind when CMT has me feeling down or I’m tempted to be hard on myself.
Everyone places their hope in different things. It’s important to remind ourselves from time to time what those things are, because hope allows us to give ourselves grace. And that’s not a trivial thing.
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, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.
About the Author
Robert Saiff
I really don’t know when I first got the symptoms of CMT, but I think it was in the 90’s. Got tingling in my feet, then I noticed that after running for months, I wasn’t smooth as I felt like a horse were my feet would clop. This tingling moved up my legs. Went to a couple of neurologist, the first did all kinds of test and determined that I should quit alcohol. The second one determined I had a pinched nerve in my lower back and referred me to a surgical group. They determine from reading the MRI that I didn’t need surgery. I asked for a different neurologist and he determined that I had CMT. He recommended I visit with a pediatrician for shoe and leg support as my balance isn’t very good especially on uneven ground. I elected to by pass the pediatrician. I’m 81, l still golf and hunt. I use a walking stick when I’m I the woods.
Maurizia Garofoli
Many thanks for your post. I agree with you. Hallo fron Italy
Mary Anne Schinkel
I was told by my neurologist, after history-taking and diagnostic tests were made at a clinic in Ottawa, Ontario (including nerve conduction tests), that he had the BEST news for me to tell me I had CMT2 instead of some other neurological disease. I was surprised since I was experiencing a lot of numbness and discomfort especially at night..I was 65 at the time and had started experiencing symptoms at age 60. I am now almost 80 and still walking without a cane ..I guess in comparison with people diagnosed with MS or ALS, CMT is comparatively mild even though I still have chronic night pain, and some dropfoot and balance problems.
Rebecca Becker
Hi Mr. Lee... I live in Kernersville, NC.... good to know that someone in my area is working on a positive means of dealing with this disability.
My CMT reared it's head when I was 51 years old. I had just moved to NC and started a job at WFBH. I worked there for right at 15 years then retired because my disability kept me from functioning at the level I needed to do my job. I am now 70 and I live alone and without a structured exercise program feel I need to read positive information such as yours to uplift me to explore options for improving my functionality of life. I wear orthotics, which helped for many years, then I had 3 corrective back surgeries for scoliosis within 2 1/2 years and I now have new braces (broke my others) but having difficulty trying to walk with them.
Thank you for this post. may God Bless.
Leigh Steward
there is not part of my body that has not been operated on . I was just diagnosed with CMT this year, I hope they find a cure for all of us.
Evelyn Young
My issues are many but primarily although I have braces for both legs, my legs are somewhat deformed, ie: I am knock need. It makes wearing anything other than shorts causes my braces and knees to catch on the material causing a strain on mobility. Even though using a walking stick, walking without braces is like a duck walking and my balance is impaired. Any suggestions would be appreciated.