Surviving Together

Nov. 19, 1995

[email response to a person on a post-polio email list]

"<anonymous>" said:
>[mother] lived her life for her family.
>She is a survivor..today at the age of 70 she is enjoying life...my hat's off
>to the parents and families who survived with us.

I have been reading the posts of this thread with great interest, and often great sadness. I am so, so sorry so many of you suffered the injustice and abuse you did. Terrible—absolutely awful. I am also so very grateful that not _all_ hospitals, nurses and doctors were horrible.

I was hospitalized with polio just two months and one day after my fifth birthday. I was there for the next seven months. My lungs began working on their own before the rest of my body did; it was three months before I could move anything. The first was my right big toe. I remember how VERY excited my doctor was that day when, as he often had done, he pulled back the sheet and asked me to wiggle my toes. That day I did. Just one big toe, but you'd have thought I had made a touchdown. People were rooting for me, and I knew it.

Yes, there were the crabby nurses. I remember, during my first couple weeks in isolation, a male nurse who would read me stories. One night (I think) I asked him for a story. He snapped, "Do you think you're the only child in here?!" Well, I guess I did. White sheets surrounded my bed continually; I didn't see anyone but masked nurses, doctors or my masked parents. I didn't know he was busy with others. Some months later, when I could use my arms some, but couldn't roll over yet, I remember one night struggling to fish a chunk of ice out of my glass of water and "walking" it all the way to my mouth only to have it slip from my grasp. It ended up under me between my shoulder blades, and I couldn't roll off it. I was scared to call for a nurse, knowing they'd bawl me out, so I lay on it until it melted and became a warm puddle. See what I mean? My few "bad" memories hardly qualify.

On the contrary, my doctor said my parents could visit me as frequently as they could. I don't know how often it was, but I know I never felt abandoned. Their visiting me was no small feat, either.

My dad was farming full-time then. He and Mom had their hands full. He was 47, she was 39. They had a 15-yr. old daughter having a terrible time with adolescence; an 11 yr. old son who was a slow learner, needing lots of help (he is a well-paid chemist now; he caught up!); a 5-yr. old in the hospital very ill (in the beginning the doctors didn't give them hope I'd survive); a 3 1/2 yr. old son (also weakened but not hospitalized by polio) lost without his playmate and a 1 1/2 yr. old son in diapers. Every morning Dad and the two older kids would milk the cows - no machines helped. This despite the fact that Dad also had a "touch" of polio in his arms. He would carry the full milk buckets to the shed, lift one arm up with the other to pull the string to turn on the light-cord hanging down from the bare bulb, then hand-crank the cream separator. By then Mom would have the little kids ready for the day, and would wash the 100 disks of the separator. After lunch on days they visited me, they left my sister in charge. She baby-sat and cooked supper so that they could eat, milk, separate and wash separator disks again after they got back. Plus meet the needs of their four kids at home. Now, as an adult realizing how they struggled, I wonder how they did it.

With love, is how. I never got a hint of tension or exhaustion when they came. They must have been great actors. They read me stories, told me all the details of what my siblings did since they last came so I wouldn't lose touch, and sometimes gently coached my "homework" exercises, always making me feel like a winner.

After I came home from the hospital, my parents took me to physical therapy at least once a week for a year, and did 2 hrs. of PT at home with me every day. HOW did they have time? My physical therapist was a wonderful, gentle man. Yes, the stretches hurt, but for him I'd do and bear anything. Dad also found a wonderful chiropractor over a hour's drive away. This man didn't do adjustments on me, but was way ahead of him time, doing specific massages to stimulate nerve re-growth. We went every other Saturday. Again, how did they have time?

By the next year, when I started first grade, I could sort of walk, with WKAFOs (waist knee ankle foot orthodics) that locked at the waist and knees, and using crutches. The school was entered down one flight of stairs then up another. My fifth-grade brother carried me every morning and again each afternoon down and up those stairs.

When my long Shriner's Hospital stays began, every time I was there, no matter how long, Mom wrote me a letter every day. As apparently in all Shriner's hospitals then, visiting was restricted to an hour or two on Sunday. But I had a visit on paper every day. How did Mom ever think of something to write every day?

When I was in high school one day after church, standing on the rail-less high porch entrance, a friend said, "Your brothers sure look after you, don't they?" I hadn't noticed that my two younger brothers stationed themselves, even while talking to girlfriends, where they could watch me until I was safely down off that porch. They never said anything, and never fussed. Just kept an eye out.

My whole family was on my team, in a supportive, not suffocating way. So was my rural community. A few years ago I was told by a gal a couple years older than I that there was an unwritten rule at school I was never aware of: if anyone dared tease me, he/she would have been leveled by the nearest fist. As a result, by the time I finished high school, I "knew" I could be or do anything I wanted.

It is so sad that my story seems to be a rare one. Yes, I had to fight to gain what I did. Fight hard. But I at least didn't have to also fight neglect, abuse and injustice.

In cases like mine, I agree, "hats off to the parents and families who survived with us." THEY are the real heroes.

My love to all,

--Elinor