My silent wait

By: Ellen Lenox Smith

During this pandemic, many of you are experiencing what those of us have had to learn to live with a chronic condition. You are wearing masks, washing hands frequently, isolated from many, avoiding stores, crowds, and learning to live an altered life until this pandemic lifts. And when that happens, you will get to go back to a version of the life you knew. And I and others in circumstances like me will get to return to the help we need to live a better quality of life that has been put on hold.

For people like me, this pandemic has caused the cancellation of the much needed but defined as non-essential medical help, I am used to turning to. For example, I was supposed to fly to Ohio in April for a follow up on my dislocating jaw caused by two neck fusions. A specialist there is the only one that is able to treat my condition with a mouth brace that needs adjusting every two to three months. Obviously, that has been indefinitely canceled so I have had to revert back to pureeing food to not chew and sift the jaw. I have also gone to ear, nose, and throat doctor for years now every five weeks to remove the ear wax that fills the canals and causes ear pressure, loss of hearing, and discomfort. But, that was put off for months to get corrected due to the pandemic. Then there is the gut that is nonfunctioning, I have attended colonic sessions frequently to clean me out and keep me safe and that was shut down, also. I had to learn to do home treatments on my own to try to empty the bowels, which is just something I have had to accept and make the best of.

Living with two incurable conditions, Ehlers-Danlos Syndrome and sarcoidosis, life was initially jolted. However, slowly through the years, I have had to face the loss so many things that were an integral part of who I was and what I wanted to be doing. But when something like this hits you, you have to make a decision, do you spend the rest of the time you have left feeling sorry for yourself and feeling it’s only happening to you? Or, do you can mourn your losses and then pick up your pieces and find ways to feel empowered, educated, and learn how to feel purpose and value along living with hope. Trust me, be kind to yourself, and know this is a process you have to go through but you actually can be a stronger better person for it. When we truly open our hearts and eyes, we will see that we are not alone with suffering and hardship – it is all around us daily.

So as you all wait to return to some form of normalcy, others like me will be shifting from our silent wait to returning to the medical care and treatment that have had to be put on hold. You will get to do many of those things that have been missing and we will get to watch your life opening back up as we remain as we are but we will be rewarded with our help presently missing. At least getting our treatments will help with the quality of our lives but I do hope you will remember what it has been like to have life jolted like this. And if you do, maybe you will learn to show more compassion to your neighbor, friend, family member or even stranger caught in a medical battle that will continue on with their lives. Let’s use this horrific experience of living with this pandemic to become kinder humans.

May life be kind to you.

Ellen Lenox Smith has emerged as a leading voice for patients living with pain. Featured in local and national press accounts, Ellen brings a reasoned and compassionate perspective to the need for safe patient access to effective therapies, especially medical cannabis. 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 also created the Rhode Island Medical Marijuana Patient Coalition, serves as secretary of the Rhode Island Patient Advocacy Coalition, was appointed by the governor to the Adaptive Telephone Equipment Loan Program, and is part of the Oversight Committee for the Compassion Centers in RI. She is 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 47 years and is the proud mother of four adult sons 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.

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