Advice From Rebekah Roberts: On Losing Her Mom to Scleroderma
Tell us about yourself. What do you do for work?
I am a Chicago based actor. However, I do many side hustles, as well. :)
Tell us about your mom.
My mother's name is Bonnie Roberts. Before my sister was born, my mom had quite a few titles. She and my father lived in the St. Vincent (West Indies) and worked as missionaries. She worked at a radio station. She also taught art class at my elementary school.
My mother's two priorities in life were her faith and her family. As a preacher's wife, she taught Sunday School, served as a song leader from time to time, directed the children's choir and Christmas program, organized community events, fundraisers and support groups. As a mother, even though we didn't have much money, she made sure we had the opportunity to participate in sports, music, and the arts. My mom also could be strong willed, very resourceful and at times mischievous. When she made her mind up to do something - she would find a way. Often times much to the chagrin of my father or ladies in the church.
She sounds amazing! What kind of illness did she combat? For how long?
My mother was diagnosed with Scleroderma in 1992. It's a rare autoimmune disease that causes your organs to harden - including the skin. They aren't exactly sure what causes it and there is no cure. It varies in severity, however, my mother had a more debilitating form. She passed in 2007.
It was quite miraculous she survived so many years after her diagnosis, because the doctors originally predicted she wouldn't even make it a year. Another miracle was that she even regained functionality of her kidneys for many years - which from what I hear it's relatively unheard of for someone to come off of dialysis.
What symbol reminds you of your mom?
There aren't necessarily symbols that remind me of my mother. However, I am reminded of her whenever I encounter the following: the smell of Cover Girl foundation, Earl Grey tea, any time a Carol King song comes on the radio or I hear old church hymns.
That is really beautiful. Do you recall the moment that you found out that parent was ill?
I remember when my mom went to the hospital to have my baby sister. I was 5 and a half years old. I remember she stayed in the hospital for a very long time. I remember her having to go back to the doctor a lot. I remember her having to travel very far to see specialists. Then I had to help her put on her shoes and clasp her necklaces because she couldn't do it anymore. There was no one big moment... but a progression of moments.
What was that experience like for you?
I remember knowing, "I have to help my mom." But being about 6 years old, I was super happy to help. At that age, I thought it was fun and special to help her cook or get dressed. I also had a new baby sister. It was the best gift ever. I was so excited to make her bottle and change her diapers. However, I remember it began to get hard when my mom couldn't come to my soccer games because she was on dialysis. And then people constantly asking me how she was doing all the time with a dreadful look of pity in their eyes. She became increasingly limited with what she could do as her fingers curled up and her skin and joints hardened. I remember being embarrassed when I would have friends over and I would have to stop playing or whatever we were doing because I had to go help my mom in the bathroom. Sometimes, I just wanted to feel normal. That being said, I feel like our family did whatever it took to support each other. It was a team effort. Even though life was stressful, I always knew that I was very loved.
My mom was very strong. She always tried to find a way to work around her disability. I also remember even though her appearance dramatically changed -- which occasionally was discouraging for her -- her identity was not placed in her looks. I remember other moms being too embarrassed to take a photo because they thought they were "fat" or didn't have makeup on. My mom was never like that, which sent a strong message to me about self-love and self-worth.
When I was in college, my mother's health began rapidly declining. Scary surgeries. Wounds that wouldn't heal. More dialysis. Many long hospital visits. Sleepless nights for everyone. I was going to college in California and my family was back in Arkansas, so I could only come home 2 or 3 times a year. That part is honestly too hard to talk about. It's still a very painful memory.
What inspired you to become an actor?
Performing is a thing that always came naturally to me. My family says I danced before I could walk. My father was a pastor so I saw him on "stage" every week and my mother lead the children's choir and Christmas program every year. My older brother tried out for a traveling children's musical theatre group when I was 8 - I tagged along (even though I was too young to audition). And wouldn't you know it, I booked a part. I was hooked from there on.
Have you ever been able to combine your passions for Scleroderma advocacy? If so, in what capacity was the project, event, or situation?
You know I've sometimes thought about how my story/my mother's story should be told. Especially since many people have never heard of Scleroderma. The task seems daunting, but it's not out of the question.
What I have found meaningful is mentoring pre-teen kids. I believe that is a time when so much is changing and everyone is miserable. I try to help them know that they are loved and teach them to practice compassion (yes even to that weird kid who is "SO ANNOYING"). I think that is something mother would be proud of.
What is/was the most challenging aspect of seeing your mother combat her illness?
I always thought my mom had such a vibrant spirit. The challenging part was seeing the brief moments when that spirit was broken. Whether it was from physical pain or the pain of being excluded from certain circles in our small town community.
What has been/was a rewarding aspect of experiencing this journey with your mom?
It definitely motivated me to be brave and go for what I want. I am also so grateful that I at least had her long enough for our relationship to grow from mother/daughter to friends. It was like having an older, more confident version of myself to chat with on the phone everyday.
What is one piece of advice your loved one gave you that will always stay with you?
The day before she passed, we were on the phone. I had an audition coming up but I told her I wasn't going to go because why bother... I wa