Baby Steps Returning to Living Life

Baby Steps Returning to Living Life

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.

Ellen Lenox Smith

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.

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Authored by: 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.

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Gail Honadle

If you are of the Mindset who think Universal Healthcare is a cure all I’ve got Ocean Front Property in AZ to sell you. Canada’s is near broke, as is England’s, Our Medicare is on the Verge of Bankruptcy. People die in ER Waiting Rooms, are Denied medical care as all they have left are D grade doctors, the smarter ones immigrate to the USA. Do you have months to wait to see an Oncologist if you think you have Cancer? These are the average Wait Times in Canada

Or if you are Terminal and NO doctor has to treat you or your pain? Officials working to reduce number of hospital deaths in Cape Breton | CBC News

Only Uneducated people believe Universal Healthcare will solve the Healthcare issue what is made worse by NON Medical Congress either state or Federal. All it does is Suppress intervention. The only proven method is Capitalism, where the best are paid the best, it forces non superior medical out of business. No Reason to strive to be the best, you get the old Soviet Union style life.

Roberta Glick

Thank you Ellen, for expressing what I feel. I too have EDS, Scoliosis, multiple cervical and lumbar surgeries, PTSD……I am constantly in pain, fatigued, and depressed. This has been the case for close to 40 years. I really can feel your pain. Sending my best to you. And a gentle hug. Roberta

Lynne Hall

As always. Why Old life. New life.


God bless you Ellen for being such an eloquent and real voice for the suffering we all share. Wishing you more pain free moments to enjoy!


Money makes a HUGE difference in dealing with health issues.

You have the insurance you need; and you can afford what your insurance doesn’t cover.
You can afford concierge doctors and to travel to anywhere the right specialist is.
You can afford private nurses.
Your family doesn’t exhaust themselves and lose their jobs taking care of you.
Your health doesn’t jeapordize your finances or your family’s finances.

The added financial stress must adversely affect people’s physical health.

Health care is the #1 cause of middle class bankruptcy.

And how many people commit suicide to save their families from the financial burden?

Money can’t cure every disease but it certainly can make dealing with them infinitely less stressful than doing so w/o money.

This country NEEDS some sort of universal health care.