We are excited to share a guest blog post, written by a member of the Well Spouse™ Association spinal cord injury community. Like FacingDisability.com, the Well Spouse Association is a peer support network created to connect the spouses and partners of chronically ill or disabled individuals. In this article, the author shares her story on the strength she found from connecting with other spouses facing life after a spinal cord injury, and how they helped her find her “new normal.”
I have five biological sisters whom I dearly love, but when I need empathy and understanding about my challenges as the wife of a C-4 complete quadriplegic, they don’t always “get it.” That’s when I turn to my “other sisters” – women I have met through the Well Spouse Association who are also married to quadriplegics with a traumatic Spinal Cord Injury.
We SCI Sisters are spread from California to New Jersey, from Minnesota to Georgia. Some of us have been caregivers for thirty-plus years, some for only three. Our husbands were injured in falls, diving and automobile accidents, playing football, and from gunshot wounds. Some of us had young children or were pregnant on the day our lives changed forever. Some of us later chose to adopt, or use the assistance of fertility specialists to have children post-injury.
When one of us shares her harrowing account of the first weeks in the intensive care unit, the rest of us remember our own versions. When one of us reminisces about the unforgettable compassion of the rehab professionals who guided her and her spouse to their new normal, the rest of us recall the special gestures of kindness and confidence with which we were blessed.
We compare wheelchair and seat cushion features, and discuss symptoms of autonomic dysreflexia and techniques to prevent bladder infections. We check up on one another’s kids and debate how much teenagers should be involved in their fathers’ personal care. We recommend accessible vacation venues to one another. We share what’s worked for us in terms of finding and keeping reliable home health aides. We validate one another’s feelings, encourage one another to take time for ourselves, and help one another cope in countless ways. We have our own war stories – occurrences which were stressful at the time, but have now become amusing anecdotes—such as when my two-year-old locked himself in the bedroom with his father and started playing with the controls on the adjustable bed as my husband lay there, or when the clamp on my husband’s leg bag came undone and he flooded the floor under the table at a Cub Scout banquet.
Some of us have never met face to face, and probably never will. Others of us have shared visits with each other’s families, so useful in helping young children realize that there are other families out there that are just like their own.
When one of us is having an especially difficult time dealing with a husband battling pneumonia or a non-healing pressure sore, we can get frustrated by the miles that separate us. We don’t often get to actually deliver a comforting hug or keep each other company in a hospital room. But we are just an email or a phone call away from one another, and just knowing that such support is always there is immensely comforting. Because of Well Spouse and our SCI sisterhood, we are not alone.
To learn more about the Well Spouse™ Association, go to www.wellspouse.org to find information on the many peer support services they offer.
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