As with most humans, I was born. May 27th was a warm day and my mother went through terrible labor; at least so she says.
When I was about six days old, the one and only female pediatrician in that era looked at my parents and said, "Have you noticed her eyes? They are filled with intelligence and just talk to you!"
Seems to me, I saw nothing at that point thinking this blurry condition was really quite normal. A gas bubble must have decided to erupt because the doctor laughed saying I had smiled at her.
My mother did not care about the talking eyes or intelligence, she was more concerned that I was born on a Saturday, and Saturdays children were born to work. So much for priorities.
As I gracefully aged into toddler hood, my mother decided I would not come down with the common childhood diseases so she walked me into areas far from my home. I drank in the new sights as I dribbled hardtack on my chin, and cooed with delight. A stranger stopped us and commented on my eyes…again with the eyes! I don't know what I said to her but I decided there and then that I would teach my eyes to keep their big "mouth" shut. It was the look of wonderment that caught peoples attention. I hungrily drank in everything I could grasp in a short period of time. By the way…I never did get those pesky childhood diseases until I caught them from my own kids.
At an early age, I knew I was different. No, my eyes did not talk to me, my hands did. They were more patriotic than I felt. Blue, red, white, purple, numb, stinging and finally natural. I thought this was normal. When the doctor saw them, he said it was nerves. "Don't you look at me like that," he warned, "I know nerves when I see them." I guess my eyes told him to take a hike. I was told to soak my hands in hot water and try to relax more. How could I relax…I was preparing for a piano concert…me, the baby of the group at age 8. I looked at my eyes in the mirror and asked them if I was nervous. They did not answer me and I continued to turn blue. I did well, for an eight-year-old, but my eyes told the audience I was not too happy being there. Wish they had told me that!
It was not until I was married with three children that the real reason for the patriotic hands and the pains and the tiredness were finally diagnosed. Many doctors looked away from my eyes as they tried to explain what they did not know. One doctor finally tested me for Raynaud's and guess what…I was a classic case. It took ten minutes for color to return to the area on my back that had just hosted an ice cube. And oh, yes, Rheumatoid Arthritis…that's sounds about right. I looked at my husband who could not look me straight in the eyes. I wonder what I was saying to him. But I was lucky…my husband was a Physical Therapist and I had the paraffin bath at home, the weights, whirlpool…you name it. His office was in our basement. I think he had fun torturing me, but I must admit it helped.
One day, my husband said, "This has gone far enough… there's something wrong somewhere and we have to find out what!" By now I knew I talked with my eyes…everyone told me so. How I wished I could have a discussion with my eyes to find out what was behind them. What voice did they use? Eventually we found a Doctor Michael Rost who really knew his stuff. He added to the other ailments however…Lupus and Scleroderma. Said that right now I had nothing to worry about, but after menopause…watch out as my body decided which it'll be. Well since I had about thirty years to wait, who cared?
Living on the East coast became harder and harder as the cold immobilized me. Along with the women's movement, my marriage went to seed and I found myself raising my three kids alone. They always tell me they would take one look into my eyes and know to stay away or come close. See, even they could read my eyes. I moved to California, leaving my oldest son (then 18) to care for the house until it sold, sent my daughter off to NYSPlatsburg for her college years, and my youngest and I settled in to the world of swaying palms and warm air.
Menopause has a way of sneaking up on one. My mother started in her 30's and so did I. Guess I did not have that extra thirty years to wait. It took me seven years to find Dr. Daniel Wallace, who looked into my eyes after we spoke and said, "You've been testing me, right?" Right, I gave him symptoms, not diagnoses. Well, everything I had was a Lupus/Scleroderma reaction. Just what I needed to hear.
Dr. Wallace has seen me through much pain (Fibromyalgia) and discomfort (Sjögren's) and major decisions. He has become more than a doctor, he is a friend whose advice I trust. Of course, as he divides my body up into little pieces…the pulmonary doctor, the gastroenterologist, the nerve guy and the ophthalmologist, my eyes must tell him plenty, but he seems to take it with a grain of salt.
I now work half time. I have been teaching for over twenty years…you know, the rotten ages, eleven to eighteen. I do not want to give it up, but my body is saying consider it and my eyes are finally talking to me too; they look tired, they hurt from the Sjögren's, and they're telling me to start doing for me. I am wondering if my eyes and I can negotiate a compromise so we will both be happy.
Email: [email protected]
Story Posted 12-28-98
Email updated 3-24-03
Story edited 7-14-03 SLE
New email address 01-15-08 SLE
Story update PDF's added 01-15-08 SLE
Blog link added 07-22-11 SLE
Natasha Lubin: Sjögren's Meets Scleroderma
Pg1: Thelma & Louise of the Geriatric Set by Natasha Lubin (PDF)
Pg2-7: Thelma & Louise (PDF)
Listen and Laugh. A humorous blog from a senior citizen with scleroderma. Natasha Lubin.
SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.