Life has a wonderful way of rapidly changing from appearing to be running smoothly to suddenly feeling out of control. This drastic change in the flow of my life recently happened, causing me to have to wonder how I could live without fear again. 

One Saturday, I was working out on my stationary bike in the cellar when I suddenly woke up on the cement floor with my bike stuck on top of me. Unable to figure out what I was doing on the floor and also not able to undo myself from the tangle of the bike, I had to call my husband to come down to the basement to help me. And thus, began the rebirth of our uncertainty about what life was now throwing at us. 

This event woke up the horror we had experienced years earlier after having nine catatonic episodes due to a C-3 shift in my neck from living with Ehlers-Danlos syndrome. This caused a form of PTSD for both my husband and me. When I had my second neck fusion, which was a successful surgery, we thought that this part of our life living in fear was over. But now that doesn’t seem to be the case.

After three days in the hospital and undergoing every cardiac test possible, I was sent home with a heart monitor as the doctors could not find an explanation as to why I passed out. Knowing that at any moment this could suddenly happen again without warning, my husband and I have been struggling emotionally on how to live safely. Should he always be around me? Would I be safe at home alone or taking a walk by myself? Would this ever happen again or was this a freak event that would never have an answer or resolution?

My cardiologist has allowed me to return to the pool where I can kick on my back. Gone are the days of being a master swimmer, swim coach, and being able to do every stroke due to fusion and shoulder issues. But being in the water kicking helps keep my mind, body, and spirit alive and active. Can you imagine the panic with the staff when I arrived at the pool explaining that I may pass out but am not able to be resuscitated due to my weak rib structure? Chest compression would have a fatal result due to the weakness of my chest structure. The staff watched me like a hawk, even checking on me in the locker room. But trying to return to a sense of normal by working out wasn’t as easy as I thought it would be. With each kick and movement, I kept checking in with myself: was I feeling funny? Was I going to lose consciousness again? Was I able to accept that if another episode happened while in the pool, I would most likely drown and lose my life?  

As the weeks have passed since the incident, the damage from the fall–which included a concussion, a twisted spine that got locked out of position, subluxated hips, as well as many bruises and cuts–has started to subside. With the increased physical pain lessening, so did some of the anxiety. 

I began to realize that even if my husband was with me 24/7, he would not have any warnings to catch my fall. I couldn’t keep living in fear of the unknown. So, I contacted the cardiologist to ask for his blessing to return to my long walks on the road parallel to Second Beach in Rhode Island. His response was short: “Always a tough decision.  If you feel up to it, and want to try, then I think it is reasonable to do so.”

My life is up to me again, and how I want to handle the days ahead knowing that at any time I may drop again. With still no answers or solutions, I realize I just can’t continue to let fear rule my life. I need to weigh my options and find safe ways to address my emotional and physical needs. I have to remind myself to be sensible and realistic. I may never have another episode, or this may happen again with a less happy outcome. Maybe I will need to have a pacemaker implanted; or maybe some other treatment will help improve my safety. All of these scenarios are possible – yet, one thing I know is that life still needs to be lived.

Right now, I therefore am choosing to live while trying to push the fear of the unknown to the side; I am hoping that the reason for the incident, and solutions to resolve it, will be found. But if this does not happen, I will continue to remind myself that I have had an amazing life. I am grateful for all that have touched my life and the amazing opportunities I have experienced.

May life be kind to you…

–by Ellen Lenox Smith

About the Author:

Ellen Lenox Smith has emerged as a leading voice for patients living with pain. Currently, Ellen serves as Co-Director of Medical Cannabis Advocacy for the U.S. Pain Foundation and is a member of its Board of Directors. She is also active with the EDS RI support group.

Prior to patient advocacy, Ellen was a longtime middle school social studies teacher. She has been married for 48 years and is the proud mother of four adult children and grandmother to five grandchildren. She also is the author of two books, an organic gardener, and was previously a master swimmer and high school swim coach.