a special group of friends

I have a lot of friends, some from each segment of my life, and each place that I’ve lived. And these days I have good friends from book club and the neighborhood. But there is one group of friends that I really cherish – my women’s SCI (spinal cord injury) support group.

A bit of background: Way back around 1982 or so, I was in an urologist’s office, probably for a bladder infection or routine visit. Back in those days it was recommended that all paraplegics have an IVP test done once a year to check kidney function (Intra-venous pyelogram, if I remember the acronym right, a truly nasty procedure with dye injected in your veins and serious dry heaves of nausea, while the doctor watches the dye go through your kidneys). These days a yearly kidney ultrasound is ordered instead, and every 5 years a cystoscopy where the urologist looks inside your bladder, and the IVP is thankfully gone from the annual routine. Even before I had the supra-pubic catheter I have now, I was intermittent catheterizing myself every few hours, and it was not unusual to get bladder infections every so often. So, perhaps I was in the office for a bladder infection, perhaps an annual visit.

Ok, I’m in the waiting room of the office, and there’s another woman there in a wheelchair with a 2-year-old girl riding on her foot pedals. I struck up a conversation, saying that I was recently married, and we were thinking about having kids, but I was very anxious about how hard it would be. She invited me to a support group she had started with another woman with a young son, for women with disabilities who had children. Both women are SCI. It was an eye-opening experience for me, not just because of the information I learned about parenting, but also because it was the first time I had really enjoyed socializing with other people with disabilities. And frequently the conversation wasn’t on parenting, but other issues related to our disabilities.

The group got together for several years, and then fell apart when the kids, including mine by then, were school age. But I stayed in touch with a few of the women till I moved east around 1994, and then reconnected with them after moving back to San Diego in 2004.

While living in Maryland I volunteered to answer phones or do filing at the Spinal Cord Injury Hotline, which no longer exists because funding was lost. But while I was there I met several SCI women who filled that void for me. I’ve talked about Jane before, the woman who was shot in her back in a 7-Eleven. I like knowing people I can talk to about disability related issues, from finding a good doctor to picking a wheelchair. I also did a lot of advocacy work in Maryland, on county and state commissions related to parking and building accessibility. And so there I met other people with disabilities too. I’m still in touch with a couple of these friends, but see them seldom now, living 3000 miles away.

About 2 years ago I attended a class at Sharp Rehab for women with disabilities on weight management. I got some useful tips about diet out of the class, and lost 17 pounds, almost all of which I have since gained back because I stopped counting calories. The best thing to come out of that group though, was getting to know 3 other SCI women. And when the class ended, I found myself wishing it wasn’t, so that I could see them more.

I thought again of that earlier support group, and of how much I missed my Maryland support, and wondered if I might find interest to start a new group here. So, I contacted the 2 women I knew from years ago, who I’d been in touch with again, since moving back to San Diego. And I followed up with the 3 I met at Sharp. And one other got pulled in as a friend of a friend. And a new women’s SCI support group was born. In the beginning we met monthly, and had a specified topic each month to start conversation – examples are:
Autonomic Dysreflexia
Medications and Supplements
Exercise
Clothing
Gadgets
Bowel management
Bladder biz
Parenting
Gadgets
Pain Management and Medications
Wheelchairs and Cushions
Aging and Menopause
Travel
Sleep
Universal Design
Adventures Large and Small

Now, 2 years later, we’re just a group of friends, who gets together over lunch every 2 months, no topic needed. One woman has a 2 year old, and can’t attend regularly. Often there’s someone out with a medical reason, most commonly a pressure sore. So, it isn’t unusual for only 3 or 4 to be at our meeting. All the women in the group are intelligent, active people. More importantly, they are generally a positive, problem-solving bunch. No polyanna attitudes (everything is wonderful, let’s all hug), or denial that life is more complicated for us, and no shrinking violets in the group either. We talk about what is going on, and offer suggestions and support.

Today we sat around my back patio table, and it was an absolutely gorgeous sunny comfortable southern CA day. We caught up on news: who was doing work on their house, what the kids were doing over spring break, and what to do when visitors come to town. And we talked about bowel problems, new wheelchairs, and unexplained fevers and pains. We’ll laugh as we talk about colonoscopies, and say where else can we talk like this?

What I got out of today? Besides a lovely 2 hours of chatting with friends, which all alone is good for the soul? Someone suggested I see a rehab doc about my wrist before doing surgery, as a 3rd opinion. Perhaps he’s seen more of this condition in paraplegics, unlike the hand surgeons who see a broader population. Someone else suggested I contact the wheelchair reps about what models I would like to see at the Expo, so that perhaps they’ll bring chairs I can try out. And one more person talked about a tea she drinks when she gets constipated, that keeps her from using strong laxatives. Good advice all around, good friends indeed. I hope what I say is as much help to them, as they are to me, but this needn’t be said out loud. The fact that they keep coming back, says plenty