How Scleroderma has changed my life

When I was four years old, my mother suddenly became inexplicably and severely ill. Almost overnight, she went from being “the fun mom” and a “social butterfly” with a host of friends, who never sat still, to someone who could barely get out of bed, isolated herself from others, and lived in constant severe pain. Soon after she became ill, she had to stop practicing law because she was unable to concentrate and advocate for others while dealing with unpredictable ailments, brain fog and often uncontrollable pain herself.

There was no one big moment…but instead a steady progression of moments during which our lives changed from being packed with birthday parties and playdates to being full of doctor’s appointments and hospital stays. My mom, the woman who used to read me a book every night for bedtime and who held tickle wars with me, now could barely keep her eyes open or concentrate long enough to spend quality time with me. I remember knowing that my mom needed my help.

Being about 6 years old, I initially thought it was fun and special to help her cook or get dressed or help her to care for my baby sister. But then, my mom could no longer come to my basketball games and everyone began to constantly ask how she was doing. My mom became increasingly limited as to what she could do. I remember times that I was embarrassed for my friends to come over to our house because I did not want them to see how sick my mom truly was. I just wanted to feel like a normal kid with normal responsibilities again. I became sad, angry and withdrawn. For a long time I felt as though I lost her.

It took more than two years of traveling up and down the East coast while visiting various specialists before my mom was eventually diagnosed with two rare autoimmune diseases, including systemic scleroderma. Scleroderma is a progressive and sometimes fatal disease that currently has no cure. At the time of diagnosis, the doctors told my mom that she had a maximum of seven years to live. During one of these appointments, the doctor actually told my mom, in front of myself and my little sister, that she had to accept the fact that she would not see us grow up.
Scleroderma affects everyone differently. For my mom, it attacked her entire gastrointestinal system resulting in irreversible digestive difficulties and other serious medical complications. Currently there is no treatment that will completely halt internal organ damage.

Initially, my mom’s appearance rapidly changed and she became extremely depressed. She was no longer able to even look at herself in the mirror, let alone be her former confident self and interact with others. She once told me that she felt trapped in a bad dream in a stranger’s body.

One of my older brothers could not deal with my mom being sick and what he saw in those early years as her loss. In order to cope, he resorted to using drugs as an escape from reality. So not only did we have to deal with my mom’s illness, but we also had to deal with the ups and downs and chaos drug addiction brings to a family. Not only did I mourn for the life we had before my mom got sick, but I also missed having a relationship with my brother with whom I was previously very close.

Scleroderma changed our entire family dynamic. I had to grow up watching my mom suffer. She tried to but could never hide her illness and it’s effects on her daily life. As the oldest child at home now, I have become somewhat of a caregiver to my mom, trying to help her cope with and handle a lot of the stresses that are the result of living with a chronic disease. A year or so after diagnosis, I saw my mom begin to fight her depression. She began attending a support group for individuals with scleroderma. Thankfully, that seemed to help her almost immediately on both a social and emotional level. She told me that she was able to feel like part of a larger community and by meeting other people with the disease, she no longer felt alone. They could understand her thoughts and feelings on a completely different level than we could because of their similar experiences. She became more knowledgeable and outspoken about scleroderma. She started to smile and laugh again. We started having fun again. I started to get my mom back.

As the years went by, I too became more knowledgeable about scleroderma. Every year I participated, along with the rest of my family, in fundraising walks where I met all types of people with scleroderma who were living their lives as my mom was. They weren’t simply trying to get by, but rather they were thriving by speaking out about their experiences, all to help others. For the first time in my life, I started to understand what bravery and selflessness are. These people put their own pain aside to lift up others who were lost and seeking a purpose.

Fortunately for our family after about five years of being sick, with treatment, the progression of my mom’s disease slowed down markedly. Don’t get me wrong, she has her good days and her bad days and is in the hospital several times a year for various ailments. But I am extremely proud of how strong she has become during the course of battling this disease.

Watching her, I have learned what it means to be resilient and how to remain positive despite life’s unexpected challenges. As one of my mom’s caregivers, I have developed an understanding and appreciation of the importance of being reliable and dependable. Now I see my mom as the warrior that she has become. I see her fighting to live on a daily basis. Thanks to watching my mom’s journey with scleroderma, I have learned to appreciate every moment of every day.