My name is Ani Maserejian. My mother was diagnosed with scleroderma. This is her story.

It started out with a cough. Not a bad cough, or a painful cough. Just a little one, the one that you can always feel at the back of your throat, but just can't get out. She ignored it. "I don't have time to be sick, to go to the doctor. I have too much to do. It will go away." That's what my mother, 49 year old Eugeny Maserejian, said about her sickness. And she was right. Between running her own beauty salon, Jenny's Hair Design, and working there for over 50 hours a week, taking care of a husband and two daughters, who, despite being 20 and 21 years old, still needed her very much, running the house, volunteering at church, taking care of her mother-in-law, and doing her daily Cindy Crawford workout, she hardly had time to sit down, let alone be sick.

But she liked it that way. She was always busy, always active. She used to say being busy was therapeutic for her, taking care of others helped ease her own pain. And she had lived through many. Her father died when she was 19. Her brother, beloved grandmother, and only sister passed away a few years after that. She had undergone open-heart surgery shortly after the birth of her second daughter (me). She had moved halfway around the world, from Kuwait City, Kuwait, the Armenian community where she grew up. to Watertown, MA, her new home. And she did it all with love, compassion, gentleness, faith in God, strength and incredible style.

I don't have time to be sick. It will go away. But it didn't.

The cough came in late November, 1995. By the end of January, 1996, she was diagnosed with scleroderma. We had no idea what it was. A skin disease, the doctors told us. A joint disorder, like arthritis. Is that all, we thought. Thank God it's not cancer.

The doctors said she may have had it for up to ten years. We never knew. She always felt fine. Finally, we understood why her usually fine skin had started to crease so deeply around her eyes and ears and chin.

She grew worse. By February, she was on oxygen. She had stopped working after New Year's, yet by the time she was on oxygen, she could barely get off the couch.

She entered the hospital for the first time in March, and came home a few weeks later. We still had no idea what we were dealing with, but we continued to be optimistic. There's no cure? No problem. We'll just adjust to a new life. I spent all my free time between classes helping her, doing the housework. Both my college-graduated sister and father worked full time. "See," I used to tease her, "now you're finally getting a vacation."

April, she was back in the hospital, and didn't come back till May. Three days after she came home, she was rushed back to the emergency room. She had an infection in her chest, and pneumonia because of it. Only then did we learn how bad it was. How her lungs were little, shriveled up lumps, barely pumping in her chest. She needed a lung transplant, but was rejected for surgery, since she was deemed too weak to survive it. Doctors told us she had 2-3 years to live.

It was a nightmare, for her, and for us. Our dear family, we who loved and needed each other so much, was going to be split apart, shattered. First we were numb with shock, then blinded by denial. "NO", I screamed silently to myself. "I need her. I can't live without her. I can't imagine life without her."

She continued to smile, so we did too. We made the best of the worst.

After classes let out, I spent every day in the hospital with her. She had been moved from Brigham and Women's to Spaulding Rehab. Everyday, I watched her go through hours of therapy. Tapping her back to dislodge the fluid in her lungs, massaging her hands to push the blood through her blue fingers, watching her walk ten feet down the hallway, and cheering her through every step, helping her go to the bathroom.

I never heard her complain. She never cursed God for her condition, but thanked Him for her life, her family, her friends, the unbelievable show of love and support from her many friends, the hundreds of get-well cards. Yet, at times the cards would upset her as well. I remember her reading "Get well Soon", and knowing that the soon would never come.

I talked to her about my life, about the LSAT I had just taken, my plans for my upcoming senior year at Boston College, my dreams for Law School. At night, my dad and my sister came, and we had long conversations about how they met, their dating and early years, funny stories from when we were babies.

When she was feeling well, she used to dress up a little and put on the wig we bought for her after her hair fell out from the combination of drugs she was on. (Ironic, for a hair stylist to lose all her hair. But she never fussed. She knew where a person's real beauty came from.) Then we would move into the little parlor-style visiting room down the hall, where all of the uncles and aunts and cousins and friends of our extended clan would come to visit. She used to cross her legs and shine her smile, and fool them into thinking she would be well again.

In June, a cousin told us about a seminar to be held by the Scleroderma Federation on Saturday. She read about it in a newspaper on Wednesday. My sister and I went, and were astonished by the number of participants, by the distances they had traveled, by the variety of symptoms. We finally learned what this thing, this disease was that was eating away at our mother's lungs.

We felt hopeful by the new medications, the studies, the treatments. We had never heard of the SF, or support groups, or of anyone else who had it. We returned to my mother's hospital bed full of news and enthusiasm. These doctors don't know anything. Just wait, you'll beat this.

She got better. Then worse. Then better. Then another infection. The medical roller coaster ride was taking its toll on all of us, but especially her.

On Friday, Aug. 16, she came home from her umpteenth hospital stay, the first time in months. The following Tuesday night, she had another attack. We called the paramedics, who performed an emergency procedure in the ambulance and put a tube down her throat. Her last words to me, as they were loading her onto the stretcher, were "I don't want to go." I kissed her and told her she'd be OK, home in a few days.

The next morning, she was conscious again, but we told her to sleep. Her body had swollen to three times its normal 5 ft, 96 pound frame, she couldn't speak from the tube, and had a number of things attached to her. We surrounded her with our presence, holding her hands, massaging her feet. We filled her with our love.

By that afternoon, she was in a coma. Four days later, after all her family had seen her and a priest had blessed her, her lungs, little solid, hard lumps, stopped pumping, her heart stopped beating. Almost eight months to the day after she was diagnosed, she truly did go home.

I miss her so much, at times I feel like I can't breathe, or think, or feel. Yet, from the very beginning of the entire ordeal, we all grew closer to each other, tightening our already strong family bond. My mother was a gentle woman who never needed to raise her voice. I am grateful that I never raised mine to her. The doctors asked us if we wanted her to not be sedated, while she was in the coma, if we wanted them to try to wake her up for a final farewell. We said no. There was no need. We had already said all that needed to be said. We knew how much she loved us, and she knew how much she was loved.

Many people feel uncomfortable around me. They see my pain, my grief, and are afraid of it, afraid of the death around me. Yet, I try to live for her life as well. As much as I learned about myself, about faith, grief, strength, hope, despair, and love by my mother's eight months of illness, and from her death, I have learned even more by her 49 years of life.

I try to honor that life, her love for jokes and laughter and bright colors, and another blessed, hopeful day. Life, as much as it is tied to death, is stronger than death. Life is meant to be lived, to not merely survive and breathe, but to uplift and revel in, to make the most of. This is her message, her story, yet, it is also mine. Just as much as her life is a part of me, so will her death form me. Yet, I will always think of my mother as the energetic little woman who never sat still. And when I think of her now, I think of her in Heaven, leaning beyond a cloud, telling me to keep smiling, to keep going. To live.

Email maserani@netscape.net

Copyright © 1997 Ani Maserejian

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