There must be some cosmic alignment underway because our lives have turned into a chaotic mess. Somehow the SCI our family has been dealing with for the last 7 years has thrust us into a spotlight. This is happening on a couple of fronts, but the major being we have suddenly become the poster family for being screwed out of the benefits my husband was promised when he retired under the total and permanent disability plan of his employer. His employer is suddenly “reserving the right to amend, suspend and or terminate” all benefits to all retirees. They have chosen to terminate all benefits with about 4 weeks notice.
I’m sure everyone affected by SCI knows how devastating this news is. I have cried, thrown the papers in the air, and just sat in utter disbelief and despair all to no avail. But now I have a chance to try to make a difference. I have been asked to participate in some “things” which will very publicly demonstrate our situation. One I have already done. It is a hard thing to put your life out there for everyone to judge.
I guess that is my major fear. Maybe some could think my husband has no business surviving, and we are just sucking the benefits system. Believe me, we have asked ourselves if people should survive like this. But the fact is he did; he had the insurance, and that’s the gamble insurers take. I am trying to look at this as an opportunity to stand up for ourselves and all the other retirees faced with this terrible situation, and most days that is how I see it. But some days I’m thinking what in the hell have I gotten myself into. It is funny how something you never wanted for your family, like an SCI, just might give you an opportunity to make a difference. I hope that is what happens, but it scares me to be out there for judging eyes.
Why can’t we be the poster family for the Power Ball Jackpot? Now that I could handle.
What a nightmare for you guys! The judgement thing - no one on this planet has the right to judge someone else or their family. Sometimes it seems to me that fear is associated with great opportunity for growth AND for making a difference. Just the same, I can only begin to imagine how scary this is for you. Be kind to yourself.
welcome to the forum I hope you find great benefit from this community and I already know the community will benefit from your membership.
You are right that everyone in the family gets traumatized at the moment of an accident or diagnosis. And trauma affects the brain and nervous system, sometimes permanently. In the old days, we therapists used to think that if you talked about your trauma enough, it would kind of detoxify. Now we know that talking about it repeatedly can sometimes make it worse.
There are many therapies out there that have a very good track record with trauma. Mindfulness-based cognitive therapy works well and the newer therapies like the one you describe haven't been well researched yet, but seem to have a great deal of promise.
We suffer often because of how we react to things and not because of the things themselves. I've talked about the 23-year-old couple I treated and the husband became a quadriplegic. The impact of that was devastating and the marriage didn't survive. I also created a 65-year-old couple with the same injury. They did very well and the relationship improved. Same injury, same wheelchair but different people with different perspectives.
Sometimes life and sometimes therapy helps diminish the intensity of our reactions to outside stressors. And when that happens, the world feels a lot less threatening to us.
Welcome to the site. Thanks for your thoughtful post and compelling story. I am so very sorry about both your husband and your son.
I am always so stunned when I hear other people’s stories. SCI never seems a simple injury does it. That is obvious from your situation which resulted in far greater consequences than just your husband’s injury.
In our case, we were all traveling in the car when the accident occurred. Not only did I have my own injuries, my husband had his devastating injuries, and our kids (ages 6 and 8 at the time) also had injuries themselves and needed me. We were taken to different hospitals in separate ambulances, so this entire SCI experience from the get go left me feeling helpless and initially unable to be the mother and wife I felt my family needed at the moment of the accident.
The manual therapy you mention sounds very interesting, and I am so glad you have found some relief. I’ll have to think about that one. I often wonder if I ever decided to try something like that, would I actually be able to find a way to do it. I guess where there is a will there is a way.
My job almost feels like therapy to me. I love it, and it gives me the chance to feel normal. I’m not a caregiver or in a unique circumstance at work. I’m just a colleague working like everyone else. That feeling has a sort of normalizing effect on my life.
Thanks again for sharing your situation. I hope you will keep posting.
Trish, Dr. Dan, & A-T,
Wonderful webchat yesterday. I identified with so many of your comments during the discussion. At the time of my accident, I was still trying to get a grip on the single mom role after a complicated divorce. My daughter (youngest of three) and I had finally found a small house to rent, in an eclectic neighborhood close to her high school, that was perfect for the two of us.
After getting through the first few weeks in critical care, my daughter and I had to decide where she would live while I spent 4 months in rehab. Three families offered to care for her during this time. We selected a family from our church and the church actually built a room for my daughter on the lower floor of the house. This family consisted of a single mom, who is a high school teacher, and her three children, two of whom were my daughters friends. They even provided a home for our mineature dachshund (they had the same type of dog).There were so many things to be taken care of and, we were so fortunate to have friends who stepped up to the plate to help us.
When I say that I can identify with many of the issues discussed, I mean that before becoming a C5-7 incomplete quad, I was a single mom and did repairs, mowed the lawn, worked one full time job and two part-time jobs, kept up with my daughter's activities, attended school functions and additionally began assuming all of my own care over a period of about a year.
So, all of this to come around to the conclusion that I'm it for several roles including quadriplegic and caregiver. It truly is a never ending, around the clock job. I applaud each of you for choosing to be a caregiver.
Welcome to the community A-T. Great discussion online! Thanks.
PS - another insomniac night! It's the "witching hour" - 3AM and I'm being entertained by the strange song of a bird outside - letting me know another day is close at hand...