By Ellen Lenox Smith.
Recently, I watched a friend wait as her father in law’s life slowly came to closure. Hope was all gone for healing and it became clear the end was inevitable. The process he went through was extremely painful and thus heartbreaking for him, their family and friends. It was so difficult to care about someone and not able to help alleviate the pain and loss a dying person experiences. You want to comfort and alleviate the pain, but that isn’t always possible.
As I listened, talked and cared about her in this process, I couldn’t help but think about my own immortality. Living with two incurable conditions, I know there is a good chance that life will come to closure sooner than most my age. Numerous times, I have had breathing episodes that leave me temporarily catatonic. The horror these episodes have placed on my family is just heartbreaking. I don’t want to make them nervous about my safety, my future and concerns that life will suddenly take that turn of no return.
Watching them enter him into Hospice at home, I thought about if this would ever even be an option for me. A few years ago, before having neck fusion, when my life was on the line, my doctor attempted to get me into the Hospice program. However, I could not accept the use of the requirement of only using their physical therapist. With Ehlers-Danlos Syndrome, manual physical therapy is the safe way for helping the subluxations, which is not the type of physical therapy brought into your home. I have already had two surgical repairs from mistakes and a more aggressive approach used with a regular PT. So, due to this, I failed hospice and then also palliative care, for the same reason. I could not agree to use a PT without them having the understanding on how to safely help me. That, itself, could create serious added health issues. So here I was, unable to be provided the comfort and care like others, but fortunately, the two neck surgeries have given me a much safer lease on life.
How sad it is to have to have those obstacles living with a rare and misunderstood condition, all the way to the ending of life. Due to not being able to metabolize any opiate, I will not be able to use morphine, the common medication used to ease the pain and help with the transition for the dying patient when involved with Hospice. Both of my parents had peaceful endings due to Hospice and morphine that was administered. When my time comes closer, this will not be an option, for being reactive to morphine would not help but instead cause reactions. So, will they be willing and be allowed to help me with one of the two only pain medications my body can metabolize – ketamine and cannabis, both still considered controversial by many? And if not, where will this leave me? The thought that this battle of understanding and finding compassion will potentially continue until the end of life is a bit heartbreaking and unnerving.
This recent experience made my mind drift back to a movie that mesmerized me when I was younger, called: They Shoot Horses, Don’t They? The theme dealt with how we are able to make that heartbreaking decision to put an animal down when suffering is to the point that there is no quality of life left and no more hope. But what about us? What can we do to offer ourselves hope for a peaceful transition? It is heartbreaking to watch people having to suffer, some very intensely, as the days go by with this difficult process. We all have to learn to find our peace with the process of closure of life and be grateful when one is able to transition peacefully.
Life is a Balance of holding on and letting go
– Rumi –
Via (The Minds Journal)
May life be kind to you.
Ellen Lenox Smith
Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/
Author of: It Hurts Like Hell!: I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.