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Alicia: Linear Scleroderma

My doctor said the people who are looking at me and seeing the scars
are the ones who need healing, and that I should pray for them.

Three Teddies for Alicia by Sherrill Knaggs, ISN Artist I was born free of any deformity, all was fine and well. I was a gorgeous baby and was asked to do some modeling, although my parents weren't comfortable with that.

When I was four years old, my mother and I had a slight car accident in a Volkswagen and I had no seat belt on. She hit the breaks and I flew forward and hit my mouth on the handgrip attached to the dashboard. According to my mother, I cried for only a few seconds and then stopped; of course, I do not remember it.

During the next year my gums started to recede, my lip started to become cleft-like, and my teeth started to rot. The left side of my face started to hurt and scars started to appear. My mother began to panic. She rushed me to the dentist, who took x-rays and found that I had fractured my gum on the left side of my mouth, which killed some nerves. This was the beginning of what would become my life with linear scleroderma.

In the following months, my face lost its fat and muscle and took on a mask-like appearance. I had a long brown scar that went straight from my forehead to my chin. The scar was totally straight and made me look like I had two faces; one side still beautiful like that little girl I was born as, and one like a badly burned little girl. I often tried to hide 'bad' side, and I would try to talk to people who did not know me with only the 'good' side.

My mother and father frantically took me from one doctor to the next. No one knew what to do for me. Since I was born in 1966, and the accident was in 1970, not much was known back then about linear scleroderma.

Finally, in 1972 we were told to go see Dr. Walter Okunski. He examined me and, at the time, he was honest enough to tell us he could not do the plastic surgery for me. I believe he was just getting started or pretty new at his practice. He recommended that we go to New York City to see one of the top plastic surgeons in the world, Dr. Thomas Reese. Dr. Reese diagnosed me with linear scleroderma. I went to him once a month for the next twelve years!

He did silicone injections. I would cry every time I had to go, but I would insist on going so he could fix me so I would not scare people anymore. Kids made fun of me, adults stared and I was afraid to go to school. No matter how much I did not want these painful injections and the many, many surgeries, I actually did it for the other people. I knew this at a very young age. I knew I could have been happy even with my scars if only the other people could and this even included my family and friends.

I would hear my parents talk and my mother cry, as she felt guilty for that accident. So I thought if I could find any way to be "normal" I had to do it for them.

Dr. Reese would, in the years to come, become my hero. I drew pictures for him, I wrote him child-like letters thanking him, and we became very close. He attached my tongue to my lip. For about ten days my tongue and lip were stitched together so the blood flow would occur. Then he cut my tongue away, giving my cleft lip a full appearance. He cut off my left earlobe and put it on my nose, as it had lost a lot of fat.

As I mentioned earlier, he shot silicone into my face, which gave it a fuller look. Eventually, all those injections caused me to have a terrible phobia of needles. I have panic attacks when I know I have to get an injection. I believe it was because as a small child, I was awake during the process and saw these long needles coming down towards me, looking like they were going into my eye. I must now get off this subject because it's making my post traumatic stress active.

Anyway, Dr. Reese made lots of improvements but could not stop the scleroderma itself. He always said that he can try to fix the damage, but there is neither a cure nor a way to stop it. "It must run its course." He also told me he had beautiful actors and actresses who had no scars come to him because they thought they were ugly or fat and that no matter what he did for them they always saw ugly in their mirror.

He told me when I was a young teenager that I was beautiful and to never become like them and to always remember that there was someone in worse shape than me and that I really wasn't that damaged. He showed me some pictures of his other young patients and I cried for them. I swore to him that I would never again pity myself and that when someone made fun of me I would be strong.

By the time I was eighteen I would have my very last injection and surgery. Because my state financing ran out and we had no other insurance, my last visit with him went something like this: Dr. Reese wanted to have a counseling session. He said to me, "I have known you for twelve years. I have watched you grow into a wonderful young lady. I have saved page after page of your drawings. I feel that not only have I accomplished all that a plastic surgeon can at this time, but I feel that I have helped you understand that beauty is only skin deep for you seem to have grown to accept your condition and you seem to be very happy and strong."

Then he held my hand and told me to always remember when I look into my mirror that I have no scars and that the people who are looking at me and seeing them are the ones carrying the scars, that they are the ones who need healing, and I should pray for them.

Then he asked me to tell him how I have been. So I ended our last session together with this: In the last twelve years I have made about six best friends, had about thirteen boyfriends, three of which were serious. I graduated from high school and just had my own beautiful baby girl, Jessica, who at this time, was only about three months old. I swore I would never let her grow up to be shallow or self-centered like some of the children I had known. I told him I was getting married to Jessica's father in eight months and had been with him for two years. He is Italian and very handsome, 5' 6" tall, 170 pounds, and has jet black hair and dark brown eyes. Dr. Reese said that he knew I would be happy.

Today I look back and wish I knew if Dr. Reese was still alive. The last I knew he was about seventy-five years old and living in New Mexico, teaching other doctors about linear scleroderma and other autoimmune disorders.

I would love for him to know that I now have two more children, a thirteen-year-old son, Marc, and a seven-year-old daughter Krysten. And guess what? They are from the same man I had Jessica with. We are now married for twenty years and have been together since high school.

Dr. Reese was right! I truly am happy and much stronger than ever!

When I turned twenty-one, however, I fell down some outside steps and hit my head on the left side on a metal railing. And guess what? Yes, the scleroderma began attacking the left side of my scalp. It took eight years for the scleroderma to do all the damage it could. This sent me to Dr. Walter Okunski, who is, as far as I am concerned, the best doctor in the Lehigh Valley area.

Dr. Okunski and Dr. Murphy have put some of my shoulder muscle into my face on the left side This is a procedure they did not do back when I saw Dr. Reese. It was a perfect fit. Although I was in intensive care and under morphine and was told it was a serious surgery to undergo, I just had to do it this time for myself because the silicone from years earlier had hardened and shifted. I wanted to see how I would look with real fat and muscle in my face again. And I must say I am pleased, although the scars are still there. Anyway, as a result, I have severe head pain and seizures from the head trauma and am looking to future medical breakthroughs to overcome my pain.

But until then, I will go on telling children to always buckle up when they ask me what happened, and I will be forever grateful to Dr. Okunski, Dr. Murphy and of course my doctor and confidant, Dr. Thomas Reese.

To Contact the Author

Alicia
New email address needed 09-14-06 SLE
Old Email Prefix: aliciasquitieri
New email address needed 07-18-06 SLE
New email posted 08-04-06 SLE
Story posted 3-20-03

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
LINKS
Juvenile Scleroderma
Linear Scleroderma
Scleroderma

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Judith Thompson Devlin

Judith Rose ThompsonJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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