BY SUSAN ODGERS
Special to the Record-Eagle
---- — Dear Susan:
My grandson was injured in a car accident. He’s 18 and now a paraplegic. He was driving downstate with friends and they let their spring fever speeding get the best of them. Thankfully no one died in the crash.
I understand that my grandson has many challenges ahead of him. I’m wondering with all of your professional and personal experience, what advice would you give to him?
A concerned grandmother
Ten days ago, I observed the 37th anniversary of my stroke.
As anniversaries go, I had a very busy, long work day followed by a late brief dinner with my husband. That night, I actually dreamed what I would say to this woman and her grandson.
In my dream, I remembered when I was first paralyzed and my own grandmother wrote a similar letter to a young woman she’d read about who had used a wheelchair for many years. The woman wrote my grandmother and said that she didn’t have any advice for me. She wished me luck and said I’d have to figure out my life for myself.
Though my grandmother understood, she was disappointed by the response. I recall her asking me how she was going to help meet my tremendous needs when she lacked the expertise.
In my reply to this grandmother, I thought of what I could say to her that might be helpful and not overwhelming. I also took the stance that I might have only one chance to communicate with her. Additionally, I prefaced my discussion by saying that I didn’t have all of the answers, especially not all of the answers for her family. These were just some ideas. Use what fit, discard the rest.
I started by hearing her experience. I told her that she needed to find people, other than her grandson, that she could share her thoughts and feelings with. I reminded her that this had happened to her whole family — not just to her grandson. She’d go through her own grieving for what he’d lost, what she’d lost.
There would be obvious and understated losses. If she worked at it, eventually she’d be OK. Her love and care for him would go a long way in helping him rebuild his life. It would be really important that she didn’t coddle him. His rehabilitation was meant to help him care for himself and be independent. Someday he’d have to live without her and his parents. Reaching out to me and others was a big first step for her. I answered a few of her specific questions and gave her a small number of referrals for further assistance.
For her grandson, I visualized doing lots of listening. If he asked me what had really helped me thrive for 37 years, I would share a few key things. First, I would tell him that progress is much more important than perfection. There are going to be lots of things he is going to have to do in a new way. Spending time comparing the past to the present is a waste of time.
As the woman my own grandmother had written had said, he had to figure out his life: what he still wanted to do, who he was on the verge of becoming. I’d tell him this wasn’t the end of his world. Parts of the experience would be really tough. He’d want to quit. Most of his experience had the possibility of feeling like pure grace.
I’d tell him I had to learn that I was still me. He’d have to do the same.
I’d share the importance of being a good communicator. He’d need to know what he needed and how to ask for help. He would have to learn lots of ways to communicate — assertively and sometimes aggressively. At times, communicating was going to have life or death consequences. He wasn’t going to be able to assume that strangers knew what he needed.
Caregivers and/or medical folks wouldn’t automatically know the particulars of his disability. The first few years were where he’d get accustomed to his changed body. He’d create his new normal. Every day he’d learn something new about himself.
He was going to have to think and act strategically — most things were going to take more time. Besides doing less and moving faster, he’d have to figure out his own system for getting through each day. Navigating the disability information on the Internet could be helpful. Connecting with the disability community is something he could do when he is ready. It might take him quite awhile before he is ready….possibly longer than his grandmother would like.
At 18, and for me, 19, we’d felt somewhat invincible. It’s part of our typical human development that allows us to take risks and learn. Having our lives turned upside down at a young age took some of that invincibility away. I’d tell him people would stare and refer to him as a member of a minority group. Some would make assumptions about him because of his disability. He’d have to find ways to ignore it, use humor or smile and engage people. He’d also have to recognize and come to terms with his own internalized misconceptions about people with disabilities.
Like me, he will experience the large challenges like learning how to get around using a wheelchair, driving, going to school or work, socializing, getting dressed and taking good care of his health. A more subtle skill he’ll need to develop will be that of anticipating. To have a full life, he is going to have to become a planner. He’ll have to learn where every bump in a sidewalk is, how to know if a driver sees him when crossing the street, which public restrooms are really accessible and so on.
When I awoke, it was the first morning after my anniversary. I found the grandmother’s letter and...
Susan Odgers, a resident of Traverse City for the past 25 years, has used a wheelchair for 36 years. She is a faculty member at Northwestern Michigan College and Grand Valley State University. She can be reached via the Record-Eagle.