Cared For vs. Caregiver - Reeve Foundation

In the last 26 years since I became paralyzed, I have been helped and cared for by a lot of people – my late brother, my own kids, dear, steadfast friends, doctors, nurses, and even total strangers – but none more so than my wife, Ann-Marie. When we were on the Montel Williams talk show some years after the injury, as I was peddling my book about life after paralysis, Montel suddenly confronted Ann-Marie in the audience and asked, “Why did you stick around? Why didn’t you just run away?” She calmly answered that we had already been “together for a very long time…that matters a lot…certainly, I was lonely, but you have a family, life has to go on...” We were in our early 50’s, been married for 30 years, with two kids and her mother living with us. It was not a rational option, or even an irrational one, to cut bait and run.

In all those decades that we have been together, Ann-Marie had rarely been ill, and childbirth aside, only once had been in the hospital, for knee replacement surgery. During that whole time, it never dawned on me that she would get seriously ill or injured. Day after day, month after month, year after year, she tended to me and the repercussions of paralysis – home wound care, usually nightly, 3 am frantic dashes to the ER with high fever, usually from infection. Watching me pass out on a street corner from the life-threatening effects of a pulmonary embolism. Finding me in my office unable to speak or move half of my body from a series of mini-strokes (TIA’s). For 26 years, she’s had to deal with these often frightening exigencies. She often cried and cursed and raged, but she never faltered. Not once.

As many of you know, you can carry around a deep reservoir of guilt and regret, subjecting someone to a life like this. That’s why I say “I’m sorry” too much. The best I could do to express my endless gratitude was to be ever mindful to her sacrifices and be as responsible for my own needs and frailties as I could possibly be. I haven’t always made the mark on either count.

Then, about three months ago, Ann-Marie fell ill. I won’t go into detail because it would violate her privacy, tantamount, in her view, to opening up another wound. The situation has generated a steady undercurrent of fear, anxiety, and prolonged anticipation. The medical process is headache enough, but she is in the hands of the best of the best, so that gives us both some reassurance. The emotional and often physiological fallout has been brutal.

All of a sudden, save a few bad colds, some stomach disturbances, and a knee operation, I became the full-time, day and night, caregiver in the family. Since I can’t run out to the pharmacy, drive her to the doctor’s – I’ve just had major shoulder surgery myself – and have few caregiver skills to begin with, I soon realized what was to be my primary role – to pay attention. To listen carefully and continually, to offer what advice I could muster, to handle some troublesome calls, to be a sounding board for her many worries and concerns, and to Google up useful information. Of course, sometimes, that free-flowing Internet river of facts and opinions only makes matters worse. Doomscrolling is almost an automatic go-to response when you are facing an unpredictable medical crisis.

Many of us with lifelong disabilities, including myself, tend to think of ourselves first. Even after the novelty of being disabled has worn off, when it long ceases to be even a passing topic of any conversation, it immediately pops back into focus when you are faced with a physical hurdle or a novel social situation or even walking past a full-length mirror. In many situations, it’s what you might call constructive self-centeredness. Watch that curb, it could be deadly. When someone tells you how remarkable you are, and you believe it, it’s just ego stroking, and who doesn’t crave that?

Flipping day-to-day caregiving roles is a huge psychological shift, almost a liberation of spirit, when you wake up in the morning, and your first thought is not about you or your parade of problems but about someone else. I am certain that Ann-Marie will persevere through this crisis and come back as strong and healthy as ever. I’m just glad I am here to help her or console her or just listen to her. I consider it – and her -- a blessing.

Allen Rucker was born in Wichita Falls, Texas, raised in Bartlesville, Oklahoma, and has an MA in Communication from Stanford University, an MA in American Culture from the University of Michigan, and a BA in English from Washington University, St. Louis.