When you face a progressive, incurable condition, you may reach the point where you are forced to face the issue of your mortality, much sooner than you expected. Chronic medical conditions can often worsen despite your best efforts and often create the feeling of confronting an unwinnable endless battle. You may eventually come to terms with the thoughts that life is coming to closure. You may decide to put your energy into preparing for your ending. It is emotional, yet at the same time liberating to take charge of what little is left in your control.
I live with both Ehlers-Danlos Syndrome and Sarcoidosis that were not diagnosed correctly until my mid-fifties. The news of these two conditions came just a year apart. Due to facing these issues, life brought on many challenges. As I am sure many of you can relate to, there was a loss of a career I adored, the loss of the ability to do simple things like walking, driving, reading and even eating certain foods, along with having to be aware of medications that were not compatible, making life more difficult than I was prepared for. And in time, it appeared, despite my strenuous battle to help myself, my life was coming to closure.
I consider myself a fighter but also one who addresses reality head on. As I confronted my twenty-fourth surgery, just over a year ago, I was at the point of experiencing catatonic episodes due to a blockage of breathing. So, I decided it was time to prepare for the ending I wished to create! I prepared my last wishes that included my memorial service details. I love music and realized it was a chance to share my favorite songs at the service. I also asked a few special friends if they would speak on my behalf. I realized, after meeting my brother and sister in GA, upon the passing of my Dad who was a musician, that we became blank when asked about the details for his service. Having grown up with a composer and director, we suddenly couldn’t even think of the songs he adored. The emotion of the loss just took our memories temporarily away. So, by planning my future service, I realized I would be able to help my family through those difficult decisions that needed to be made and lift that burden for them! And for me, it was freeing to review my life, my passions and what I wanted to be remembered for at my memorial service.
I learned to keep a list by my front door for the rescue or anyone that would come into the home to help. I included details of family to contact, diagnosis, medications for both me and my service dog, necessary equipment lists to bring with me to the hospital – like my bi-pap machine, special therapeutic pillow, etc. I even had some dog food with her medication in baggies ready, in case.
But after hard work, twenty-four surgeries, tons of hours of rehab, eating only foods I could metabolize, medications my body could accept and trying to remain positive, time brought on an unexpected change. For the first time in years, since the second neck fusion, I am now able to read again without dizziness and nausea, able to drive short distances, and even walk down the street if the ground is flat. I never truly thought these could be part of my life again, for I was truly prepared for the ending of life.
So, today, I am learning to live this life again with renewed hope and new dreams. I still have those incurable conditions, but for some amazing miracle, I seem to presently have a new lease on life. I feel grateful to experience things that were unavailable for years, but also know that at any time, things can take a turn for the worse. For instance, living with EDS, a simple hug creates weeks of waiting for inflammation to calm down and bones to settle back into their correct position and hold again. So, I am now coping emotionally with a new direction knowing that this may not prove to be lasting change but appreciating that it is amazing to have, for now. And I smile when I think of this unexpected gift I was given. I know if most had to climb into my body that I am so happy with, they would think I was crazy. As we live with pain and losses, any positive changes are such a gift that help you to appreciate any little positive that comes your way.
I am not sharing this to compare experiences. I am sharing this since I want you to also find hope and just maybe get lucky, like me, with a new lease on life. I figure anytime I have a day feeling improvement, it is a gift beyond my imagination, for I truly was prepared to die. I know this gift isn’t forever, but it is here today, and I will remain grateful and try to make the best of it.
May life be kind to you,
Ellen Lenox smith