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Joyce Roby-Washington Sees Beauty Come from Ashes with the Help of her Husband, Kim

Scleroderma is anything but solitary. One person is diagnosed with the disease, and that person alone feels the pain from it. But the lives of his or her friends and family dramatically change as well. Though loved ones can't suffer for the person diagnosed, their reality and priorities shift.

Joyce Roby Washington, Summer 2015 VoiceMost families don’t have a choice. There is a diagnosis, and life changes forever. But Kim Roby-Washington had a choice. If he married Joyce, he would enter her journey with scleroderma. If he didn’t, the disease simply wouldn’t be a part of his life. To him, it wasn’t even a choice.

“I waited all my life and knew in my spirit that we would have a beautiful life together regardless of what challenges scleroderma had in store for us. I understood the challenges. But more importantly, I knew that we would have a future together, and that was all that mattered. So we embraced life together and moved forward,” he says.

But Joyce was skeptical. By the time Kim proposed, she had been living with scleroderma for three years. She felt her body changing and her capabilities diminishing. Once an active runner, dancer and swimmer, she had slowed down and was accepting a new reality. The number of her appointments was increasing, as well as her list of doctors.

In addition to her personal struggles, her parents — who lived in Mississippi — were both in declining health. Her father passed in 2004, her mother in 2006. It was through those trials that she began to lean on Kim, just an old friend at the time. “We became close friends and he was very instrumental in helping me deal with my parents’ illnesses.” But the friendship grew stronger,and as the relationship began to develop, Joyce felt concerned.

“My health was getting worse and worse. And Kim wanted to get married. I wanted him to come with me to an appointment, to understand how serious the disease was. And he just kept saying, ‘It doesn’t matter what it is, I’m already in it. But if you need me to do that, I’ll do it.’”

They went to an appointment and even after hearing all the complications of the disease, Kim was steadfast:

“However bad it gets, we’ll do whatever we have to.”

They got married in 2006, and Joyce had her first true flare-up in 2007. Joyce remembers the feeling well: “I was faced with a new normal: I’m a patient who has a chronic, life-long, aggressive, debilitating disease. And its name is scleroderma. This is my new discipline. I didn’t even have the strength to get into and out of the bathtub by myself. I couldn’t open a bottle of water. I was cold. Always.”

Kim had a new normal, too. Every morning, he would cut fresh fruit for Joyce’s breakfast. He opened six bottles of water for her and put extra socks by her rocking chair so she wouldn’t have to open the drawer. He put fresh flowers in the vase and laid out her knitting so she would keep busy. Seven years later, this is still his morning routine.

“He became that voice of today and right now for me, helping me focus on the present. We aren’t promised tomorrow. This is where we are today. It’s my journey; however I choose to travel that journey is my decision. I can only do this for myself. As loving as Kim is, and how much he would sacrifice for me, it’s my journey. The beauty of all of it for me is that my husband has been here, solid and understanding. He is more loving and patient than anyone who has ever been in my life,” Joyce explains with admiration.

As their marriage made her stronger, she began to be a voice for others, helping to educate and encourage people in the scleroderma community. Someone asked her if she would lead a support group, so she did. She attended national conferences and heard about how African-Americans suffer worse than any other group.

She was inspired: “I thought, ‘Can we have a gathering of us who are suffering so harshly that brings enough love in the room to encourage each other? To walk out of the room with hope?’”

She got involved in the African-American Patient Education Day in Philadelphia. “It was amazing, well-attended, and the speakers were phenomenal. We had goodie bags and people gave so warmly and lovingly. People can’t wait to do it again.”

Where the National Conferences are an opportunity to meet faces across the country and hear from nationally-recognized doctors in the field, the education days meet a different need. “It was personal and intimate. The topics were geared for us as an audience. There was a wealth of knowledge provided,” explains Joyce, who had a huge part in planning the event. She continues to take an active role in helping people cope with the disease, inspiring not only other patients, but those around her.

Kim explains, “Joyce has truly taught me that living with this disease is all part of a journey, and how you pack for the journey is a coping strategy that is designed new daily. How you choose to navigate it is absolutely a choice. Her way is by encouraging others, taking focus off of herself.”

“Scleroderma has taught me to go deeper and renew my strength daily. I became a stronger, wiser and more compassionate man. This disease has taught me to always be prepared and supportive. Plan everything, but be surprised by nothing.”

Joyce and Kim use one another to create a positive, life-affirming environment in their home. She had her moments of questioning why she should have to suffer, but has even found peace and acceptance through it: “Despite this horrific disease, I have such a joyful life. After learning about it and all it entails, I didn’t understand why it was happening. But I looked at my husband, and in him I’ve seen beauty come from ashes.”

This article originally appeared in the Summer 2015 issue of "Scleroderma Voice." Become a Scleroderma Foundation member today to receive four issues per year.

 

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