A Sibling’s Perspective
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.