What I Now Understand About My Mom’s Ehlers-Danlos Syndrome

alexandra

Alexandra and her parents.

Alexandra is the leader of the Morristown NJ EDS Support group.

I was diagnosed with Ehlers-Danlos syndrome after an eminent radiologist in the UK, Professor Smith, saw bulging discs all down my mid-spine, which is very rare, herniated and bulging discs in my neck and signs of ligamentous laxity at the craniocervical junction. Back in the US, they also found craniocervical instability and critical atlanto axial instability where I am close to a brain stem compression, as the upper vertebrae of my neck have acquired an abnormality.

Shortly after my diagnosis my mother and sister were also diagnosed with Ehlers-Danlos syndrome and this had a huge impact in making me see things very differently. For many years my mother had a “bad back” and sometimes we thought she was “overdoing it” or even “putting it on” a little. My gosh, I felt so ashamed and almost beside myself with pain and grief. To feel trapped in a body full of pain was something I had never experienced and, therefore, doubted to a certain degree. It made me truly realize that oftentimes what the eye cannot see the mind does not believe. My mother would get dressed up and go out and sometimes I privately wondered if there was not a degree of attention-seeking. There never was a truer saying that one should not judge a person until you have walked a mile in their shoes. In fact, she was a strong lady making the best of her life. My mother’s bad back started in her early 20s and worsened after having children. Her doctor at the time had dismissed her and told her to “have a child and things will get better.”  

My mother is now 63 and almost all of the discs in her neck and lower back are fully dessicated. She also has a notable scoliosis impinging on all her nerves, she had a peritonitis, as of course having Ehlers-Danlos means that if you have an appendicitis the tissues are already weak so it can quickly progress to a burst appendix. She needs double wrist and knee replacements and her pain has been exacerbated with her declining age.   

All these years I look back and suddenly that lifelong struggle is crystallized for me. I remember at Christmas when the family would complain that Mum was being slower in the kitchen and the immense pressure she must have been under to “be” like everyone else. I weep also for the life I had and sometimes I am jealous that I am not able to excel like others or make a good effort and achieve what others are able to. I feel like a failure and I am sure she did, too. To already feel less than adequate and for others to make you feel that way also is a tragedy.

But at the same time I understand that how can you possibly know what it feels like to be broken inside? My mom used to cry in bed a lot and sometimes I would want to block it out. Sometimes we would have to call my dad as she literally could not move off the stairs as her back had gone out (i.e. the disc herniations were very bad that day thus immobilizing her). But I couldn’t see it so I didn’t think it could be that bad, since she looked so pretty and normal on the outside and she had taken me to school that morning.  

When people talk of appreciating life with newfound eyes after a near-death experience, I comprehend this philosophy. And yet none of us will ultimately grasp it unless it happens to us. We might murmur tacit words of agreement, but our minds do not experience that actual feeling. The closest I can sometimes get is when someone knows a person who slipped one disc in their lower back which can occur more frequently with age. Imagine having 10 of those and injuries of a similar nature all over your body. Imagine being trapped in a body screaming out in pain internally but looking like a “normal” person on the outside.  

I cry with compassion now for the struggling of others who are afflicted for life with different illnesses. There is a mourning for the loss of a happy, pain-free life. To be able to hop into bed and not even think about what position you will fall asleep in, to sleep through the night without constant adjustments as the pain wakes you up, to sit cross-legged or with your knees to the side while watching TV or having a picnic, to sit chatting all night in a restaurant without having to leave because it hurts to hold your head up, to swim, to exercise, to hike or jump on a bouncy castle even — everything that brings joy and fun and excitement to one’s life as well as the little things we simply used to take for granted.

One of the most important, and oftentimes sadly misunderstood, issues is that if help and preventative advice was given, many ensuing problems could be avoided or at least partially mitigated. Others’ lack of belief, in turn, can lead to a lack of understanding and sometimes compassion. A couple of doctors along the way have hurt me within the setting of physical exams as they dismissed EDS as almost “not real.” This, in itself, is devastating. Emotionally, we have been scarred due to the inability  to grasp the tremendous internal pain people struggle with, coupled with a lack of thorough knowledge of this disease and how people desperately need to be protected.  The fact that my mother waited 60 years for a diagnosis never knowing why she was in so much pain and my grandmother died never knowing the answer is the biggest tragedy of all.

My heartfelt message to my Mum is, “I am so sorry and I love you. I am sorry for not believing as much as I should have, I am sorry you suffered for so many years with no answers and I am sorry this disease is still so terribly misunderstood. I hope with the combined strength of the EDS community to change that and my love for you and for many others has inspired me to do this.” A famous professor in England, Rodney Grahame, who has worked tirelessly to raise awareness and to encourage neurosurgeons to take some of these co-morbidities more seriously coined a very apt phrase: “No other disease in the history of modern medicine has been neglected in such a way as Ehlers-Danlos syndrome.”

My message is that neglect can also become a great catalyst for change. In the words of one of my heroines, Eleanor Roosevelt: “You must do the things you think you cannot do.”

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