Juvenile Arthritis, Blindness and Living with Joy: An Interview with Joy Ross
"I am happier without sight than when I could see."
Joy Ross is 36, lives just outside Portland, Oregon. She has been happily married for 12 years to her husband George and the mother of two beautiful daughters, Isabella (10) and Georgianna (7). Joy has had juvenile arthritis (JA) since she was three years old. As a child, her disease was primarily expressed through uveitis, an inflammation of the eyes. Joy had her first cataract surgery at age 5, but as she grew up at a time when there were no treatments for JA and RA, her sight got worse as the years went on. When she was in grade 7, the JA spread to her joints.
"Growing up was a struggle," Joy says, "I was losing my sight and had to deal with obstacles like school and homework." Despite the challenges, Joy graduated from high school with a 4.0 GPA, in the top 10 percent. She went on to college, where she met her husband on a blind date (this still makes her laugh). She has been on "methotrexate, DMARDs, Biologics, but developed staph infections. After three years of chronic staph infections and being hospitalized eight times, I went off the meds." She has been in remission since. "I feel really good, really healthy," Joy says, "I feel the best I've felt in five years." Should her disease flare again, she intends to go back on medication.
One consequence of the JA was a steady worsening of her sight. She tells the story of going to Disneyland with her family five years ago. "It was like there was a dark curtain in front of my eyes." She found out one week later that her retina was detaching and she became completely blind. "Disneyland is my last memory of seeing my girls. I saw them with princesses, it was magical." Joy says. "We went back to Disney this past Christmas and it was so hard not seeing them."
After losing her sight, Joy got a guide dog, named Antonia. "I hated the cane," she says, "I used to run and be a fast walker, hated feeling like a child. I went to get a guide dog, she is my freedom." Joy has also found a community of blind mothers, with whom she talks about the challenges of parenting with a visual impairment. "My biggest challenge is that I want them to feel that I know them and that's hard when I can't for instance see their artwork." Still, she focuses on the positive, saying "it's hard at times, but that's very small. The big picture is the love."
Joy is an Attitude
Joy disagrees with those who call her brave. "I don't see it as brave. This is my life. Am I going to sit and mope? Joy is an attitude and a choice, I can let the JA and my blindness define me or use it positively." Her husband travels frequently and she often finds herself in the situation of "needing to prove I can take care of my children, to break down stereotypes about the blind." She finds questions about how she perceives the world "hilarious. I see with my hands, ears and nose. I love to go shopping, I love fashion. I touch and feel the clothes and I can see it again. It comes to life when my hands feel it." She explains about "losing her reflection," but says that when she tries on clothes in a store, she asks where the mirror is. "Once I touch the mirror, I see myself. I remember what my reflection used to look like."
JA Runs in Her Family
A six-month period in 2008 and 2009 was "really hard." Joy had just lost her sight completely when her oldest daughter Isabella was diagnosed at age 5 with JA in her joints. Because of the family history, Joy and her husband had been vigilant about getting the children checked and six months later, Georgianna, who was three at the time, was diagnosed with uveitis. Her youngest daughter is in remission, and Isabella is on Enbrel. Given the rarity of the family's health situation, their DNA is currently being tested by the NIH.
Joy is not just a mother, but also an important support for her girls. "My own JA makes it easier for me to understand what the girls are going through." She herself was very isolated as a child, saying that "I didn't meet another person with JA until my children got diagnosed." She is very involved in The Arthritis Foundation activities for children with JA, such as Camp JAM, a weekend camp for families with children who have JA. There "they can be kids and also learn about the disease."
Working for Awareness
Joy is a spokesperson for The Arthritis Foundation, dedicated to raising awareness about JA. "We need more funding, more awareness and more pediatric rheumatologists," she says. "People need to understand that JA is a different disease than adult RA. If the children don't get the best care, it's one more day of living with the disease that can cause irreversible damage."
She spends a lot of time talking to other parents of children with JA and is especially concerned when others speak of treating their children holistically. "It's a fear of treatment, living in fear of what if. What's scarier is to put off treatment the child may not walk or may not see, like me."
Having the perspective of growing up at a time without treatment, Joy has faith in the future of JA, and RA. So much so that she gave her guide dog the middle name of Hope "to represent hope for the future."
Joy explains the reason why she is happier without her sight than when she could see. "I've found peace and joy," she says. "I am so much happier because of where I come from it made me who I am. I don't judge people anymore. I see their hearts and they are so beautiful to me. I wish the world would see for a moment what it looks like to a blind person. I think it would be a lot kinder."
Lene is the author of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain.