Birth order has always intrigued me. Born the fourth child of six, I might have been a “lost-in-the-shuffle middle child” who couldn’t find a baby picture of herself. But I was the first girl after three boys, the last of whom my mother threatened to “throw out the window” because she wanted a girl, not another G.D. boy!
That privileged position of being the only girl changed when two more daughters were born, completing the half dozen. We were the Hall kids: Bobby, Mikey, Stevey, Cindy, Debby, and Laury, six kids born within eight years. It was the 1950s, and I grew up reflecting the stereotype of an oldest daughter: responsible, organized, self-disciplined, take-charge, strong and a bit anxious. When our mother died in 1957, I became all the more “oldest daughter-ish” (or bossy, as some characterized it). I can still hear my younger sisters admonishing me, “You are not our mother!”
The six of us bickered and quibbled and fought — a “Lord of the Flies” type of single-parent household, but no set of siblings could be more supportive and loving of each other either. So it was a shaking family event when 11 years ago I was stricken almost overnight with transverse myelitis, a rare neuro-immunologic disorder. When it paralyzed me from the T3 level and below, the invulnerable oldest sister all of a sudden couldn’t walk, let alone wiggle a toe, turn over, pee without a catheter, poop without a major process, or move independently from a bed to a chair.
“What? That can’t happen to Cindy!”
“How could she be paralyzed if there was no trauma, no accident?”
“When will she be better? I read that a third of people with TM recover fully. That will be Cindy. She’s so strong.”
But we all soon realized that being a strong, competent older sister had no effect on my damaged dendrites and the myelin sheath that fell down on its job of protecting my spinal cord. Strong had everything to do with the degree to which I would adjust to my paralysis, but it was not going to change the basic fact that “nobody was home” below T3, and there was no reset button.
When I realized my paralysis would be permanent, for some reason it didn’t strike me as a calamity. As a git-r-done oldest daughter type, I was eager to get started in the gym and to learn the new skills that I would need to adjust to life as an active wheelchair user. One by one, my siblings made the trek from southern to northern California to see me in rehab. When younger sisters Debby and Laury came to visit, I was delighted to have their comforting company. We sat out on the sunny patio and laughed at the dark humor my partner Shelly and I had already started to voice to help us cope. We would act out the wheelchair scene from the classic 1962 movie, What Ever Happened to Baby Jane — “But you are in that chair, Blanche, you are in that chair!”
Brothers Bob and Steve came to see me, too, and I began to reflect, “This must be more serious than I thought.” Then there was my brother Mike, who does not like to travel. When he came to visit with his wife and three kids, I was concerned: “Wow, I must be screwed!” And when his daughter Danielle hugged me and said that everyone was praying for me, I got worried. Our family is not known for church-going or prayer. “Was I going to die and nobody told me?”
To Shelly and me it was obvious that our lives were changed forever. But out of ignorance, denial, strength, grace or a combination, I never really worried that my life was somehow going to be diminished. I had Shelly, my brothers and sisters, extended family, a solid career, sick leave benefits, good insurance, a little bit of money in the bank, excellent rehab care; it would be OK. I wasn’t dying. I just couldn’t move or feel below the chest, pee or poop! Together we would figure this out.
So we all soldiered on … the whole family adjusting to Cindy being in a wheelchair. I sometimes wondered how my new normal affected my siblings, but I had never really asked them. As kids of the 1950s, avoiding talking about something life-changing was the family norm. It took us some 55 years to talk about our mother’s death, so talking about my paralysis only 11 years post-injury seemed to be great progress. I wondered about the ripple effect on my brothers and sisters. Had my paralysis changed my role in the family? Did they think differently of me?
What I did find was that my paraplegia hadn’t really changed their view of me or my role, but that my paralysis was a dramatic reminder of how life can turn on a dime. It strengthened their “seize the day” approach to living, and it gave them renewed appreciation for the ease with which they can do everyday things: turning over in bed at night, taking a walk, hopping out of bed to run to the bathroom, taking a quick shower, popping in and out of the car, reaching something on a top shelf, running errands, pulling on pants. It has also increased their appreciation for the level of complexity that being a wheelchair user brings to everyday life.
Realizations, Complications and Adaptations
Several years ago my oldest brother, Bob, and I were sitting at a Starbucks. I had fallen out of my wheelchair an hour earlier, and I thought my leg might be a little swollen. He helped me to get a baggy full of ice and to prop my right leg up on a chair. Half way through our coffee we realized that “a little swollen” might be an understatement. Bob raised his eyebrows and calmly said, “Maybe you should get that checked out.” We finished our conversation, and then, out of an abundance of caution, Shelly and I went to the hospital. We laughed in the ER, because Shelly had seen the X-rays and determined that there was no sign of any fracture. The radiologist begged to differ. I had broken my tibia and fibula. No pain … but two breaks!
Like my other siblings, my brother Mike was saddened by my situation but confident Shelly and I were handling everything as well as any couple could. He realized, however, that many simple things in my life would no longer be so simple, and that certain mundane pleasures were gone. He told me that one night not long after visiting me in rehab, he turned over in bed and started crying. He realized that for me it would no longer be an automatic, perhaps pleasurable thing to turn over at night with ease. He, too, was reminded how fragile life can be: “And that’s scary,” he said. Our shared vulnerability is basic to our human condition, but who wants to come face to face with it?
Steve reminded me that when he first heard that I was in the hospital, the doctors thought I would be OK and back to normal within a month or two. But within four days, news of a “limp foot” and a “minor stroke” gave way to transverse myelitis and T3 complete paralysis. Steve’s reaction? “What the ‘F’?”
After the initial shock and sadness, Steve took solace in the fact that I had such a loving partner in Shelly and that we seemed to be getting down to the reality of adjusting to our new reality. “No one could take away the paralysis, but everyone was doing the best they could. How you and Shelly handled your new situation, helped me to handle it. Your paralysis has not changed how I see you. I see you living the life you want. Finishing your career, continuing to educate others, being competitive in sports, being active with the grandkids.” Any questions for me? I asked. “I have wondered how you actually can go to the bathroom.”
Besides Shelly, my sister Debby has had perhaps the closest look at what it means to live with paraplegia. For several years she worked with me on a weekly basis, before Shelly retired. Debby, andher partner Sam, helped with housework, errands, chores, exercising, and personal care. But most importantly Debby helped me to process my new normal through dozens of conversations while we folded laundry or packed and unpacked through a variety of moves. She and Sam helped me to stay actively engaged with life, including preparing me for the 2010 U.S. Open Wheelchair Tennis Championships, although some days it was more than 100 degrees on the court. She even humorously narrated the YouTube videos we made to help “newbies” see how even a senior citizen wheelchair user could be energetic, productive, independent and athletic.
Debby tells people how I now compete in international table tennis events, often traveling by myself, and how Shelly and I take different combinations of our 12 grandchildren on elaborate adventures. She says it never surprises her that with Shelly’s support, I was never on the sidelines. “You made an effort to not disconnect. You take on more than most nondisabled people.”
My sister Laury came to realize the complications of paraplegia when she traveled with me to New York to attend the funeral of our daughter-in-law’s mother. She learned first hand that traveling with me was sort of like traveling with a baby. … Diapers? Check. Wipes? Check. Skin ointment? Check. Emergency change of clothes? Check. Bed pad? Check. Emergency food and water? Check.
Sometimes when Laury is out with me she wants to let strangers know that I am not unable but extremely competent. She wants to say, “This is my big sister. She is OK. She is an active grandma, traveler, and athlete. You have no idea what she can do.”
We Are All Siblings
In exploring the theme of ripple effect, I also spoke with Beth Ann, my sister-in-law. She had flown from Utah to California to stay with us for a couple of weeks when I was first out of rehab, helping me with every detail of transitioning home and providing Shelly some emotional support and the chance to get back to work. Like my brothers and sisters, Beth Ann at first was shocked and saddened by what I had lost. She, like all of us, had the freshened realization that we can be knocked flat out of the blue. That life comes at you full force sometimes.
She feels she is more compassionate now, and more respectful of the effort that it takes for people with mobility challenges to go through their days. “Now when I see a person in a wheelchair, I wonder about their stories. Were they injured? Did they get sick? Can they walk? Do they need any help? Do they want any help?”
Beth also shared that the ripple effect for her included learning a lot about the hidden challenges that come with paralysis: transferring, using catheters, scheduling bowel programs, avoiding pressure sores, contending with fatigue, trying to adjust to temperature changes. “Why is it that you get cold easily, but if I put an ice cube on your leg you wouldn’t feel it?” “How can you feel the pain of a kidney stone when you have no feeling below T3?”
In talking to my siblings I began to realize that the “ripple effect” that I had expected to uncover was actually the wrong image. The conversations revealed to me that what they had seen as my strength in dealing with my paralysis was actually a reflection of the strength that flowed to me from the love and support of Shelly, my siblings and others. The correct image was not of waves rippling out from me. Rather, it was an image of love and energy coming in to me, strengthening the older sister and giving her confidence to make the adjustments to life as an active wheeler.
This afternoon a new friend, whom I will call Todd, is coming over to the house to play some ping-pong. He is 30 years old, a quad, two years post-injury. Until a few months ago he was living as a virtual shut-in with his grandparents, who had been keeping him sedated and inactive. He has no loving partner, no robust circle of helpful friends or colleagues, and no siblings to support his full and active recovery. But recently he has managed to break through toward a life of self-reliance and independence.
He has his own apartment now and is gaining strength every day as he pushes around town with a mutual friend, Sebastian. Sebastian is also a quad and has taken on helping Todd as if he were a younger brother. Todd’s new engagement in life has come, in large part, to his adopted “older brother” who gives him the love, support and vision that life as a wheelchair user can be engaging and full.
Which takes me back to the sibling effect. Seems to me that Todd could use an older sister. I’ll try not to mother him.