For many living with chronic, perhaps even life-threatening medical conditions, life expectations are often tempered by experience. As a result of our lives, often being dominated by emotional and physical trauma, cause us to have a natural tendency not to feel hopeful and positive. This can even occur when our condition may begin to respond to treatment in a positive manner. Unfortunately, when you live on the edge of life for a while, you learn to get into the mode of expecting chaos, downfall, disappointment, isolation, and heartbreak. But what about if you are fortunate enough to begin to feel any positive changes? If you are like me, the panic and fears which may now seem to be embedded in your psyche can still easily creep into your soul, despite enjoying the new changes. No matter how hard I try, I can easily slip emotionally, assuming the negative must be coming back to my life.
After years of corrective surgeries to end the four years in a wheelchair, numerous catatonic episodes due to the slipping vertebrate in the neck, for example, my body does welcome the positive changes I am now experiencing. However, as soon as “it feels” that something “might” be beginning to slip back, the emotions attempt to take over and the horrors of the past try to creep in. It feels embarrassing to slip so easily from feeling positive to returning to questioning whether my body will sustain these changes.
I try to be a positive person but as you all know, we don’t always succeed. The residual impact of our living experiencing emotional trauma is always a threat to our capacity to stay positive and manage our fears. Some days you feel on top of the world and then, you hit that day or days of chaos and wonder how to even just breath. We must remember not to beat ourselves up. We need to learn to enjoy what we have when we have it. Our perspective, attitudes, and appreciation of little things in life sure change when your emotional strength is so diminished by medical issues.
I was just mentioning to my physical therapist today that what matters to me is good health and happiness – money helps, but sure doesn’t resolve issues and buy me a cure. I remember being shocked by watching the ending of the life of a very wealthy Aunt and Uncle. Despite their resources, between them, they still ended up suffering from Parkinson’s, alcohol addiction and memory loss – and their extensive money was not able to resolve those life-changing issues. Strangely, we become somewhat equalized at the end of life – some things we don’t want just are what we must cope with, whether wealthy or not. Of course, having money would be an added gift of not having to add the financial stress medical issues present. There is nothing more heartbreaking knowing there is possible treatment, medication, etc. to try that might not cure you, but could offer improvements in the quality of life, but it is not feasible to find the money to spend. I played that waiting game recently, needing to see an EDS jaw specialist in Ohio and having to put the trip off for over a year due to lack of finances. And due to waiting, the damage progressed to the point of not being able to have it repair itself wearing this jaw piece on one side. There was too much deterioration of cartilage due to putting the help off.
I have heard myself recently saying, “no matter what comes next with my progressive condition, Ehlers-Danlos, at least I will be able to look back on this past year of regaining things back that I thought were gone for good. At least no one can take this away from me.” Of course, I sure hope it will last until my last breath in life!
May life be kind to you,
Ellen Lenox Smith
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.