A Personal Story from Laura

A personal story 

This is a vulnerable post to write, and one I have been ready to share for a long time.  And since September is CMT awareness month, there is no time like the present! CMT is a rare, genetic disease of the peripheral nervous system, and while I’ve had the condition since conception, my diagnosis didn’t occur until 2018, when I was 46 years old. I sought help after experiencing progressive weakness in my feet and calves, along with multiple severe ankle sprains, thinking my symptoms were due to chronic lower back issues, which ultimately led to my diagnosis and subsequent treatment.  Currently, treatment involves wearing braces called AFOs (ankle-foot orthotics) and caring for myself through exercise, weight training, and a myriad of other daily activities. The primary symptoms I currently experience include numbness and weakness in my feet and lower legs, Drop Foot, motor fatigue after standing for long periods, and trouble balancing.  I also have hearing loss and scoliosis, which are both attributed to my specific CMT variant (4C).  Thus far, my hands are minimally affected, and my fine motor skills are excellent.  I am grateful every day for my ongoing ability to use my hands to practice acupuncture, write, and live my life to the fullest, but I sure don’t take it for granted.  Why am I sharing this now?  Well, for a few reasons.

First, I walk funny and the braces I wear are pretty obvious, so I’d like to be out in the open about it because I really don’t mind people noticing or even asking me questions. So, if you see me at the clinic and you’ve been wondering why I wear these, now you know! They help me balance and keep my feet stable so I don’t trip. 

Second, I wanted to take the time to share how having a progressive disability has reframed the way I think about infertility, ableism, and the way the world treats anyone who is struggling with a difference of any kind.  I have always had the deepest sympathy for anyone struggling to conceive, but nothing has helped me truly empathize with the feeling that your body is betraying you as CMT has for me.  I am not trying to compare my condition to infertility, but rather to say that I really see you.  If you are struggling with feeling as though your body is betraying you, or that you’ve somehow caused your infertility, please reach out.  Let’s find a way to manage the suffering and embrace the truth and reality of your situation. From there, you can navigate your way to your own best life, whatever that may be.  

It’s taken me some time, but I can say with sincerity that I have found peace with my body and am grateful for the things I have learned since my condition began impacting my activities of daily living. I have become acutely aware of the way our society treats people with disabilities, and have become a staunch advocate for anyone experiencing ableism.  And in reality, I’d argue that there is a lot of cultural ableism directed towards folks with infertility. Terminology like “advanced maternal age” and “geriatric pregnancy” places older mothers in a separate, seemingly less ‘abled’ category.  Comments like “It will happen if you just relax,” or “Are you really sure you want to do this at this point in your life??” are subtle digs that strike at the heart (and below the belt) of anyone struggling to have a child.  I hope that our culture will continue to evolve, allowing each individual to experience life through the lens of equal treatment, care, and support from a society that accepts and protects every last one of us.