Part 2: Patience
Things that take an able-bodied person 10 minutes to do could take an SCI (a person with a spinal cord injury) two hours. And that’s if they’re really going at it! I often lost what little patience I had to begin with because my time table was disrupted. I had to wait 10 painstaking minutes for my sister to put on her socks and shoes. First one finger in the sock then two fingers then a toe then inch by inch, tug by tug, the sock finally made it up to the arch of her foot. I fought the urge to just do it for her so we could hurry up and get to school already. Every time I would get her out of the car, I had to wait for her to adjust her body and regain her balance before we could get going. I could go on and on citing situations where I lost my temper just because I didn’t pack an extra supply of patience.
Being an able-bodied person who has to adjust their lifestyle to accommodate a family member with an SCI can be irritating and downright maddening sometimes. Unlike our wheelchair-bound family members who have no choice but to develop patience, it takes a conscious effort on our part to breathe and relax. I don’t have any protocol for how to develop patience (does it even exist?!) but I do have a few thoughts that have helped re-fill my patience tank.
1) It costs you more time to rush and make mistakes. And it’s not worth the injuries.
2) Nothing we have to do is so earth-shatteringly important that it has to be done right this very second. Even “very important” things can wait.
3) Patience is a universal virtue. Once developed, you can use it anywhere and in any situation.
Amanda Haddad is a graduate student from the University of Southern California, studying geochemistry and microbiology. She was a passenger in a car accident 10 years ago when the car she was riding in rolled over in the Arizona desert. Her sister, the owner of the For Caregivers blog, sustained a spinal cord and traumatic brain injury and their journey as siblings recovering from trauma is one that many families can relate to.
by Amanda Haddad
Part 1: Helplessness
To this day, it is still surreal for me to think of my family’s roll-over accident as an event that actually occurred. The only flashes of memory I have of the incident are dreamlike. I was waking up inside a car fishtailing off the highway then in the next scene of the dream, I was waking up again inside an AirEvac helicopter asking the medic what happened. My first real post-accident memory was learning that my sister was paralyzed and that I could only see her for a few minutes. When I saw that gigantic breathing tube hanging out of her swollen face, I wanted nothing more in the world than to trade places with her and have MY head be the purple basketball with the messy ponytail. It had all been a dream and yet, here was my rambunctious sister, plain as day, transformed into an ICU patient. I felt helpless.
Though my sister has made ENORMOUS progress since that day, the hardest part for me as a family member of an SCI has been and still is, to some degree, helplessness. I see her struggle with simple tasks and wish I could give her her arms and legs back. I can’t do that but I’ve learned over the last 10 years (and am still learning) some of the ways in which I CAN help. Here are some ways I see that family members/friends/nurses/doctors/therapists of SCIs can help the SCI.
1) Listening. In all senses of the word.
2) Actively seeking changes in your surroundings to accommodate the wheelchair. For instance, leaving walkways wide and clear of clutter. Or being a scout for curb cuts in sidewalks and wide aisles in stores.
3) Helping them do things their bodies refuse to do. And, where appropriate, help brainstorm and/or design new ways to accomplish a task.
4) Encouraging them to become independent while at the same time being respectful of the extra energy they have to spend to do everyday tasks.
5) Understanding. There’s no possible way to truly know what it’s like to be in their shoes, but a little bit of understanding goes a long way.
And most important of all,
6) Patience. (This one is so important that it warrants a separate, dedicated entry.)
Even after all these years, I still have helpless moments, like when my sister’s catheter acts up and she has to abandon a social engagement to go clean up. But, on the whole, I don’t feel as helpless today as I did that day in the ICU. I’ve learned over the years what is helpful to my sister and what is not. And every time I engage in task 1), I find yet another way I can help. Besides making my sister’s life easier, helping has also made me feel less and less like I was “in the way” of progress and more like I was part of a team working toward it.
I can barely remember the Christmas after the car accident. It had been 5 months; right about the time when life slows down enough to feel how everything has changed but is still too foreign to take it all in. I was so new to being paralyzed that the world around me seemed to halt, too, all except for the emotions and the overpowering sense of loss. I was back in high school but was forced to give up many of the things I loved, including parts of my memory (the result of a head injury), my independence, and my sense of self.
That Christmas, my family had been “adopted” by the fire department and neighborhood block watch. They gathered food and supplies for my family and raised money to cover medical expenses. Devastated by the affects of the car accident, we had little energy or money to focus on anything but just being thankful that we were still a family. By far, the first year was the hardest.
We got through it, though. Through these ten years, we’ve learned that still having each other means so much more than “surviving”. It means that we have a shoulder to cry on when things get tough, a hand to lift us up, and arms to give us that much needed hug of encouragement. Every Christmas, especially, we remember the gifts of friends and family, and of the strangers who made sure that we got back on our feet, even if we might not be able to stand, literally, on them.
This Christmas will be the first Christmas in these new shoes for at least 2 families I know. Statistically, 12,000 individuals across the nation will be “celebrating” the holidays from a seated position for the first time. Some will walk again, many wont but all will feel what many of us veteran SCIs have felt- The weight of the first year. If I have one gift I can give to those 12,000 families whose lives have changed this year, it is the knowledge that things do get better. We may not be able to put a bandaid on and heal the past but we can work towards a brighter future. And for the friends and extended families of these individuals and families, please give them a little bit more encouragement in this trying time. Your support will be felt exponentially!
Ten years later, we are a stronger family and stronger individuals than we have ever been. I am a pretty independent quad; my parents are both going strong; and my sister, the world traveler, well, I hear from her every once in a while (when she’s not on a ship, exploring the ocean floor 🙂 ).
“Sooner or later life breaks us all, but with courage, hope and the support of people who care, many become stronger in the broken places.”