Hello from the desert Southwest in the anxious and divided US of A probably not so different then the state of the United Kingdom. I have just joined your group. At 70 I fell from a porch, fractured my neck and became an incomplete SCI. I was a quadriplegic for a year and some months and battled my way to standing, using a walker, mothballing my fleet of equipment and flying solo without a catheter. This new freedom is welcome but it comes with what doesn't change the body that feels like a videogame of spasms, random nerve ambushes, unreliable balance, continuing rehab, and the traveling medicine chest. I was Dean of a school of arts at a university when this happened. I taught dramatic writing so I turned to writing to help me navigate my emotional wreckage that came with the loss of my body and inform the rebuilding of what I was to become, that person post-accident. I've written a book about this experience, Take It Lying down: Finding Your Feet after a Spinal Cord Injury. You are a community that would understand the journey described. I hope you won't judge me a craven horn tooter by offering this up for your consideration.
Although we are on this journey together, and are a team no matter what, we always seem to go around in circles when it comes to comparing one another's struggles and differing situations. This seems to happen when we are facing a challenge together, or something goes wrong that we have to sort out together. He starts saying I will NEVER understand how he feels, and how he always gets the short end of the stick because of his disability. He thinks that because I am NOT disabled, and just his wife/carer, I will never fully understand his struggle.
Of course, he doesn't feel this way ALL the time - he enjoys his life, and we have a great time MOST of the time communicating and being on the same page. When we are tested emotionally and physically with something to do with this injury or something that we have to overcome, this seems to come up. His way of coping when I try to lighten the situation, solve a problem, or help to move past it by talking it out with him, is to say ill "NEVER understand" and to not even try to make him feel better. This sets us both up for a comparison game, where the injury becomes a competitive thing as to who has it rougher. I then feel horrible because I also feel like he will "NEVER understand" how I feel and my perspective on the situation, no matter how hard I try. Why do we feel that someone has to understand us in order to move forward?
Now - I know that this may be true and a lot of you are thinking that I WONT ever truly understand his position because I have not experienced paralysis myself. But that is what bothers me in the first place - why do humans have to experience something first hand to really understand how it is? Shouldn't it count that we live together, I am his 24/7 support, I see what he goes through and I feel his pain. I deal with the heartache, the stress, the frustration, the emotional and physical ups and downs alongside him - and experience them myself, only differently in a different way he could never know. I may not "know" exactly what he feels being paralyzed, but why does it matter? Does it really help to voice that "I am the paralyzed one so I have it worse" and what will that do to make things better? Is it recognition that is needed? And if so, why do I need him to understand MY feelings? Why do I even need to have him see and hear me when I feel completely overwhelmed and struggling? Can't I just accept that we both will "NEVER understand" one another and move onward and upward?
Ive realized since this injury happened to him and I that perspective is everything - it's really all there is in life. Perspective - changing it, embracing it, learning from it. Why the need to compare if your situation in life is your own perspective? If you're a team, why compare to make the other feel less important or their feelings less valid than the other? Why can't we just come together, embrace one another's feelings as 100% valid, acknowledge them as REAL and TRUTH and move past them?
This is part of the reason WHY we started this group in the first place. Everyone's feelings are valid. Everyone has their own perspective on each situation, and ALL feelings are valid if its HOW YOU FEEL. I went so many years thinking that because I am not paralyzed, that my feelings are less valid and shouldn't be discussed. Of course, that paved the way for unhealthy mental habits and not allowing myself to grieve, fully move forward, or have any self care time. Now that we enjoy balance in our life and relationship, I can look at these situations more impartially and "see" things differently than I used to. My balance helps me to help others. That being said, I still don't know why comparing and de-validating feelings are so common in caregiving relationships like ours.
Brooke (WAGS of SCI)
Call it anxiety. Call it control. Call it whatever you need to call it; I know how to pack our Subaru wagon to fit everything we need; we pack light and do laundry. We need to be able to access Geoff’s wheelchair easily for rest stops or in case of emergency. I know how to put our kids’ life jackets, fishing poles, bike helmets, Geoff’s travel commode, tire pump (have wheelchair, must have air pump) waterproof luggage bag on top of the car so that there is enough room inside the vehicle for the family, dog, cooler, wheelchair, etc. There was even enough room for the inflatable avocado and noodle net Geoff likes to float in when in water.