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By Jean Kinsey 

Fannie Pirotta, who stands less than five feet tall, is short in stature, but towers in strength and fortitude. After receiving a telephone invitation from Barbara White, ASAP's founder, Fannie traveled from her home in Connecticut to Colorado to attend the first ASAP conference in 1989. Before this, she hadn't known anyone else with syringomyelia (SM). After tolerating the disorder for 33 years, she was amazed to hear another voice speaking to her and knowing that person also had SM. Meeting other SM people at the conference that first year gave Fannie a feeling of emotional warmth and a sense of belonging. She has attended at least seven conferences since. Wishing more people were able to go to the meetings, Fannie said, "They really need to go. If I were rich, I'd send them [ASAP] more money." Fannie added that Candace Morse is doing a great job as president of ASAP, and her husband, Stan Morse, is a real sweetheart.

In 1955, before the days of the MRI, Fannie was diagnosed with SM after undergoing her fourth myelogram. She considers herself fortunate because her neurosurgeon was able to diagnose her after the fourth one. Fannie once met a woman who consulted with 16 different doctors. All 16 did their own battery of testing before the final diagnosis of syringomyelia. 

Ten years after being diagnosed with SM, Fannie went to Cleveland, Ohio for decompression surgery. Before that surgery, she allowed the doctors to do anything they suggested. She wanted desperately to understand and cope with the rare malady that had attacked her body. Fannie underwent 101 tests, the worst of which she refers to as an air test. This all but unbearable test consisted of injecting air into her spine and slowly letting it out again. That test is no longer performed. Fannie thinks a person could die from the tests they asked her to take, yet she did them without question. "But that was okay," she said. When Fannie spoke about her many unpleasant experiences, she always added, "But that is okay," and you could hear a lilt and a smile in her voice as she said it.

Fannie continued as a factory worker and bookkeeper for many years after learning she had SM. When the disorder became too much for her, she was forced to quit and turn to Social Security Disability in 1961. Fannie has seen the same neurologist for nearly 50 years. She declared she had no problem obtaining her Social Security Disability. Her doctor signed her up without her even knowing it. The Social Security investigators examined her and asked the name of her illness. She started receiving her Social Security checks right away. She said the amount of her monthly check is not enough for her to live on, but that is okay because she has some savings. Fannie fears the savings will be gone soon, but that will be okay, too, because she will manage.

Fannie bubbled when she talked about her friends and her family. She used the word 'lucky' in almost every sentence. She said she is so very, very lucky to have the love and support from everyone. "I always thank the Lord for He has been so very good to me," she said. "Everybody loves me all over the place, even the boys and girls I used to baby-sit." Fannie never lets anyone see her unless she is wearing a smile.

After retiring from her factory work, Fannie discovered she did not have the capacity to sit home and do nothing. She began working part-time in a childcare center. Some of the children she cared for are now doctors or lawyers, and one is an artist. At least ten of her former children keep in touch with her. She has even been invited to several of their weddings. Fannie believes they are now fine adults because she was strict with them and made them mind her like she did her own children.

Fannie is the mother of three girls. One of her girls was a twin, but one sibling died at birth. "If it were today, they could have saved her," Fannie said very sadly, and again added, "But it is okay because I have three wonderful girls." She has nine grandchildren and eleven great grandchildren.

At the age of 87, Fannie maneuvers around her home using her walker, but her electric power chair aids her to get to church and other places. She lives alone, with the assistance of a woman who comes in daily to do the things Fannie can't do for herself. And her daughters offer help whenever they are needed.

When asked what advice she would give to someone who has been newly diagnosed with SM, Fannie said, "Never give up. Just keep on trying." She thinks some people give up too soon. Fannie does her own ironing. She irons half of a garment and lets her hands rest, then she finishes the other half. She vows, "If I give up now, I'll just lie down and die, and I'm not ready to die." Fannie prays every day, "Lord, I don't care about the legs, just let me keep my hands." Again, she uses that word, 'lucky', when she says, "I am lucky I can stand pain." She understands there are others who aren't as fortunate. 

For many years, Fannie has encountered difficulty with her hands and shoulders. She learned to write with her left hand 35 years ago because her right one didn't function well enough to write. Now Fannie can't write with her left hand either, and she experiences sharp pains in both hands. She is determined that she will not give up and must continue to keep trying.

Since she isn't able to work with her children any more, Fannie is constantly looking for something new to occupy her mind. She has a computer but has only partially mastered the art of using it. That will be her next endeavor. She says as long as she has one finger, there is no reason to say she can't use the keyboard. Fannie jokes about her hands not doing what she wants them to do. She realizes that complaining will do no good at all, while laughing will at least make you feel better. 

Fannie's pet peeve is the telephone. It rings, and before she can get to it, the answering machine answers and the caller hangs up just as she is about to speak. She says that can be quite frustrating. So when I dial her number, I let the phone ring. When the machine picks up, I wait. I am pleased to hear a perky little voice on the other end with a cheery, "Hello." Fannie asked me what I was going to write about her, and I told her that I would say she is one of the sweetest ladies I have ever known. It was my pleasure to interview Fannie Pirotta.