As I promised in my last article, “The Rollin RN Tackles Depression,” I wanted to further our discussion. I felt as if I was only skimming the surface of spinal cord injury and the relationship of a new injury with the effects on family and friends. So jumping right in, feet first of course, how do our families and especially our friends now deal with the diagnosis of spinal cord injury, never walking side by side again? It’s not easy. All plans, desires, future goals are now rerouted into another direction. And our loved ones go through the same feelings and emotions.
My husband admitted to me he had a very, very difficult time accepting the fact that I would never be the same woman physically that he married many years prior. I still had the same quirky, quick-witted personality as before but I would never walk beside him again as I once did. Not easy to see your marital dreams disappear so quickly. Personally, I feel it takes at least a year or two after a traumatic injury such as a spinal cord injury, to reinvent one’s life. Not to move forward with your reinvention but to write out your thoughts and make your plans. Reinvention after a traumatic injury takes time……baby steps…..life steps. What I mean, it’s a learning process. But how does it happen? I truly believe an injured person and family may go through the Five Stages of Grief as described by Elisabeth Kubler-Ross:
• DENIAL
• ANGER
• BARGAINING
• DEPRESSION
• ACCEPTANCE
I don’t feel the need to discuss each stage as I believe you all have experienced some of each of these stages along your recovery and rehab. Each stage may last longer than others, and it’s individualized, but I do believe we’ve all (family and friends) been touched by some of each stage. Is it more difficult for family and friends to accept our spinal cord injury? That’s a challenging question and one I believe we can all answer differently. I decided after my accident and hospitalization that I would move head-first into rehab and become the best paraplegic I could be. Did I have my moments or days of sadness??? I sure did, but they decreased over time. I still grieve losing my ability to walk. I miss the sand between my toes, the warm ocean salt, dancing with my husband, independently attending functions (without worrying about accommodations). I loathe my spasms when I change positions, or cold air hits my body, I despise not being able to feel my bathroom needs and detest my ankles swelling and not being able to wear cute shoes. But I have accepted all of these. With all the new technological developments, such as the exoskeleton, ReWalk, etc., I accepted that I will not walk in the future unless I undergo a multitude of surgeries on my knees and ankles due to the accident, followed by multiple months of rehab. Everyone is different and has various obstacles to overcome, but in my case, it’s ok with me not walking. I will make my decision when the time comes.
A quote comes to mind by a philosopher, Epictetus, “It’s not what happens to you but how you react to IT that matters” and in that, you will be mastering change rather than allowing it to master you. Easier said than done. My husband recently met with some of his high school buddies, without me being present. They were making future plans for our families to get together during the summer. My husband stopped the conversation and explained to them as to how we now have to make much greater plans, to be sure the venue has ramps, roll-in showers, wide enough doors, an elevator, etc. You understand where I’m going…….anyway, they said to him, “Why do you allow this disability to envelope your life?” WOW!!!! My husband came home and told me about the conversation, and yes, we do allow it to envelope us. Is that wrong? Is it better to go by the seat of your pants and let whatever happens, happen? Personally, at our ages now, we never go by the seat of our pants for anything but it was at that moment I realized even some of our oldest and dearest friends didn’t get it, they didn’t understand our new life.
That made us wonder, what about our other friends…..do they get it and understand? The answer was yes and no….some do. We had one set of friends who remodeled their sunroom and asked their builder to create a ramp to allow for my entrance into their home. I was a part of their lives, and they wanted to continue that friendship within their own home. I believe that to our family and friends, the acceptance may be more difficult. It must be a true feeling of helplessness. So our response to the disability sets the tone for our closest loved ones. Yesterday, my husband was going in for a routine colonoscopy and upper GI. I say, routine, yet as a wife, I fear the worse until word comes otherwise. He was in the room on the bed, be-bopping to the music and the nurses were astonished by his upbeat behavior. His behavior has been learned by OUR strength as a family in the eyes of a tragedy. One day at a time is our motto.
I have to admit; suddenly becoming an adult whose life took a tragic turn to now live life from a seating position definitely is a series of emotional roller coaster. But how do we assist friends and family to accept our new and turned-upside-down life? Is it our job to assist them through the maze of emotions? We are working through our feelings, and it’s difficult to include friends and family into your emotional circle. I have no words of wisdom to each personal situation unfortunately. I only know my actions to include my family and friends in my recovery and life now. Many friends still desired to go on shopping trips, as we did before, but they quickly learned, transferring was difficult and now a large piece of equipment had to accompany us…..yes, the wretched wheelchair, our new legs, the latest gizmo for getting around and the “handicapped mobility van”.
The other tidbit was the discovery of our own bodies, the working on the timely catheterizations, the autonomic dysreflexia, you know the headaches that occur, and it’s all new to you. That’s why I go back to say it takes a good year to two to get your act together. I reference it to be as to bringing home a newborn and trying to get out of the house for the first time…..the stroller, the car seat, the supplies, and then there is the feeding schedule. Yes, it’s a new, turned upside-down life.
I have only been a paraplegic for going on seven years now. I am truly not the expert, and I am only sharing my experience to the new transition that has occurred within my circle of friends and family. I knew this new life was difficult for all involved and I chose to include them in my new happenings. I bit my lip many times as I am sure they did too.
Moving into this new existence took time, plenty of patience, and LOTS of understanding, tears, anger, and sadness. But you know what???? My emotional support circle has grown into a beautiful group of girlfriends, dear old friends, and my much-loved family. Transitioning into a life of being differently- abled isn’t effortless; it takes time and labor to evolve in a comfortable pathway for all involved. But it does happen if, and only if, you allow it to.
But the nurse in me advises; if you are having a difficult time finding your pathway, locate a licensed physician to assist in your quest. I only share what has worked for me.
Peace be with each of you.
Patty
For questions, you can “Ask Patty“