I am one of the lucky ones living with chronic pain from an incurable condition called Ehlers-Danlos Syndrome. Yes, I used the word lucky, for if it weren’t for my husband, my caregiver, I would not be living with this horror with a smile when able, be alive and able to live with hope due to being surrounded by love and support.
Every day, my husband takes the beginning of the morning to perform PT that my manual PT has taught him to correct up slips, return the sacrum to the correct position and push the shoulder back into position. This provides me the opportunity for a less painful and thus, a more productive day. He carries items over five pounds for me, drives when I am too tired or dealing with the shifting of the bones, pushes the manual wheelchair at the airport, comforts me when I am discouraged and fills me with his caring and hope for a better day. The list of all he does for me goes on and on.
I am lucky to be married to a man:
- Who still finds value in me despite all the losses I have had to face
- That comforts me when I am sad and discouraged
- That encourages me to live life despite the hardship
- That not only helps me but also constantly passes kindness forward to others.
- That spends hours and sometimes days away from home living in a motel while I recuperate in a hospital
- That continues to take care of himself to attempt to remain healthy and productive
- That does more than his share to keep the household running on my tougher days
- A man that shares in the wonder and joy of our family and friends.
- A man who will encourage me to vent to share painful emotions and thus attempting to transform a painful emotional experience into a therapeutic event. This allows me to realize that I do have the strength to continue this difficult journey with a degree of grace.
- A man that always carries groceries and any packages that weigh over five pounds, my limit for lifting.
- A man that loves to travel but has accepted that our life is not going to be the dreams we had anticipated to live out in retirement – going to Europe and elsewhere.
- A man that now fights with PTSD from watching me struggle to survive catatonic episodes while awaiting a lifesaving second neck fusion
- A man that is slowly feeling the changes of aging and is gracefully working towards the ending of his own life and legacy
When we say those marriage vows, “in sickness and health”, I am guessing for most of us, at that moment of excitement, it is just wording we repeat. The notion of caring for a partner with a chronic medical condition is, likely, the furthest thing from our minds on this special day. When one partner in a relationship must confront a life-altering illness or disability, a couple must address this challenge with the phrase “in sickness or health” uppermost in our minds. When confronted with such extreme situations, the options are stark. As a couple, you are either all in or all out. Your commitment to your relationship faces the ultimate test. Many are left in the dust when things become difficult, especially with health challenges. So many have failed marriages since the partner can’t handle the stress and disruption to the life that once was. I feel for those that aren’t lucky like me and lose their support. I truly can’t imagine how one finds the strength and courage to move on alone by yourself. For those attempting to live life with chronic medical issues alone, I commend you for your inner strength and courage. I admire you and hope that you, too, will be able to build a support system to help you. We all deserve the unconditional love, comfort, and support of others.
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.