Becoming the Protagonist
Kate Williams Grabau
I was such a healthy kid. I grew up in the country climbing trees, getting covered in mud, catching frogs, or getting everyone in the neighborhood together to act out these epic adventures. I remember the exact day when that changed. It was September and we'd only been back in school for a few weeks. I went straight to my friend’s house to play, but I just couldn't. They started climbing one of our favorite trees and I felt like my life force had just been drained, like the malaise of a bad flu. So I just turned around and went back home. This was a HUGE red flag for my mother. A month later, around my eleventh birthday, I had no appetite and I had dropped to about 40 pounds. I had a painful scaly rash all over my joints and even on my face. I was so weak I couldn't buckle my own seat belt. And I was in so much pain my mother couldn't hold my hand or give me a hug. The doctors in my hometown had NO idea what was going on. One day they said it was growing pains, or maybe mono since I had a fever. Then it was possibly eczema or the flu. Finally we went this one dermatologist who was so old his office looked like a set from Mad Men. He took one look at me and said, "I knew I'd see this one day" and he went into the next room to get a physician’s desk reference.
It took a solid five months to even finalize the diagnosis. My hometown doctor sent me to the Children's Hospital of Philadelphia, but juvenile dermatomyositis (JDMS) is a very rare disease, and my body has never wanted to follow the normal path. It took countless tests, scans, and skin samples until they finally had to resort to a surgical muscle biopsy. When I went into the hospital for my first treatment, the doctors wanted to enroll me in a national registry for dermatomyositis. I was number four… only the fourth person in the entire country to be catalogued, so clearly the treatments weren't very advanced. They could basically give you massive doses of steroids and some non-steroidal anti-inflammatory medicines. I gained 50 pounds almost immediately, going from an emaciated sickly little girl to downright chubby. And this was middle school, and middle school girls can be ruthless. I was bullied for my weight, and my appearance - you can't explain an autoimmune rash to middle schoolers - and for simple things like sitting out in gym. Thankfully I did go into remission for a little while, but then I was also diagnosed with juvenile rheumatoid arthritis in my first year in high school. That was really the beginning of the journey I'm still on today. My body has never wanted to follow the normal progression of any disease, so it took a long time to get my treatment plan right. By then enough damage had been done to my hands that I had to get two surgeries and lost a lot of dexterity, meaning I would no longer play the cello (did I mention I play the cello) as well as I had in the past.
It took two surgeries, and years of hard work, but I have my bachelor’s degree in music and a master’s of fine arts in acting. I have to work harder than 99% of the other people out there, but I'm okay with that.
My first REAL introduction to the Arthritis Foundation was at a juvenile arthritis holiday party for families. I didn't know anybody, but it just felt great to be around people who "just got me" - who I didn't have to explain anything to - even if it was just for a few hours. My doctors and nurses encouraged me to go to a juvenile arthritis camp, but this was a long time ago and there were some people in my life who thought I would be discouraged to see other kids in pain - which I can understand.
Eight years later, I was in college in Washington DC, so I decided to go to the Arthritis Foundation’s National Advocacy Summit. Suddenly my world opened up. I met people my age who were completely normal, who were living with arthritis. And they were awesome. I felt years of solitude and bitterness just melt away. I was hooked. I continued to be active in the Advocacy Summits, but I started joining the Walk to Cure Arthritis events, and then I started volunteering at the National Juvenile Arthritis (JA) Conference. I have to say that the JA Conference is my favorite event of the year. There are so many young people together there in solidarity, helping each other through the simplicity of their presence. It's beautiful.
The first thing that comes to my mind is that it's hard. Acting is not just memorizing lines, putting on a costume and playing pretend. It is hard, strenuous, physical work. Actors prepare for months for a role. It may look really easy while we're on stage, but as anyone with a chronic illness knows, it takes a lot of work to make something look easy.
Which feeds into the next question..."How has your diagnosis influenced your work?" It reminds me every second of every day that everybody has a story that we don't know. Every single person on the street; every person who looks perfectly fine and is parking in a handicapped spot; every character on a page has a secret. It doesn't matter if you think they are they villain or the protagonist, they have something that lies beneath. They have an untold story. I'm hyperaware that everyone is the protagonist of their own story, even if they are the villain in yours. It's my job to tell those stories, and tell them truthfully.
It's a very strange thing to be an actor with a chronic illness, because everybody in the "industry," even friends, family, and mentors will encourage you to hide your diagnosis because you always have to be aware of your
public face. There's the fear that if someone knows that you're "sick" you might not get the job, and to be honest there is truth to that. There have been instances where someone has told me that they just assumed I couldn't do something, and sometimes I'm lucky enough to get the chance to prove them wrong. So by "coming out" with arthritis I'm really hoping to not only change the public’s opinion, but also raise awareness in the industry of what disability can look like. To show that it can be seemingly invisible, but we know our bodies and we are more adaptable then they will ever know.
Go back to your Scout training: Always be prepared! I'm not at all "roughing it," but I did have to think about living out of two and a half suitcases for nine months. Just remember that you know your body better than anyone else, and you KNOW anything can happen. Before I took this job I asked my doctor at University of California, Los Angeles to advise me on how to manage my disease and treatment from the road, and if this was even a good idea for someone like me. Then I worked with my insurance company so I could refill my prescriptions in advance and coordinate their shipment with our different stops around the country. I touched base with my old rheumatologist on the east coast so I could check in with her in case of an emergency, and I always, always, always take care of myself.
Just jump. I know it's a cliché but there are always a million reasons not to do something. But to do something that really truly makes you happy, and makes your life worth living is priceless. I can't tell you how many times I've been told by people in my life, people I know and people I don't know, teachers and mentors, that this is probably the hardest job path I could have taken. But in this path so far I have not run across one thing that I couldn't adapt or one challenge I couldn't overcome. But it is a choice.
You just can't beat it - it's live theater! We have a revamped and reimagined production of a classic musical theatre piece. The production is amazing, the cast is fabulous, and the story is timeless. Moreover, it's a story of hope beyond hope. Hope in a better tomorrow even when the possibilities of today seem limited. And, of course, it's a lot of fun! It you do stop by, be sure to tweet me @katedelores. I'd love to say "Hi."
Tomorrow’s Joint Replacement Surgeries
AFeatures recently sat down with Todd M. Miner, M.D. (right), from orthopedic center in Denver, Colorado. Dr. Miner provided us with his take on the new and trending treatments and advances for joint replacement surgeries.
My specialty is adult reconstruction surgery specializing in .
I’m also Board Chairman of , our charitable organization that provides free hip and knee replacement surgery for people without access [to orthopedic surgeons] in developing countries.
The potential for biological treatment options for the management of arthritis is exciting but still in experimental phase. This could involve the use of stem cell therapies, autologous cartilage cell replication and grafting.
Colorado Joint Replacement is very involved in many ongoing collaborative research projects in conjunction with the University of Colorado medical center therapy department regarding functional rehabilitative efforts in patients suffering from osteoarthritis.
Orthopedic and joint replacement surgical and non-surgical treatments are often topics at Arthritis Foundation education events. . Additionally, the Arthritis Foundation often provides informative content on this subject via .
Why I Volunteer
I was diagnosed with juvenile rheumatoid arthritis when I was 14 years-old.
I first became connected to the Arthritis Foundation through one of their education and self-management programs. , so .
Currently, I am a member of the local Arthritis Foundation leadership Board in San Francisco. I am also on the National Walk to Cure Arthritis committee, the chair of the Livermore Walk to Cure Arthritis and the event’s dog walk coordinator.
The Arthritis Foundation has helped me a lot over the years. It’s been very impactful to take part in their programs and learn from their educational materials. They have exposed me to many different facets and treatment options for arthritis.
My volunteerism with the Arthritis Foundation offers new challenges such as cycling events. I volunteered at last year’s Arthritis Bike Classic and was inspired by all of the cyclists who participated. Ringing cow bells and cheering on the cyclists is a lot of fun. Hearing the stories about why they ride fuels my passion to continue my efforts to help find a cure for this crummy disease.
I’ve never had a bad experience volunteering for the Arthritis Foundation.
When I’m volunteering at the Walk to Cure Arthritis events,– why they are there and why it’s important to them. It’s so inspiring!
The parents of children with juvenile arthritis have made a big impact on my life. These parents are so involved and so engaged with their children’s health. They are like sponges, soaking up any and all information about juvenile arthritis. They are so eager to hear other parents’ perspectives on raising a child with arthritis. Talking to the parents and interacting with the kids is wonderful, and I am often able to share my own experiences of having arthritis since I was a teenager.
If you’re thinking about volunteering for the Arthritis Foundation, my advice is to try it. Show up. Just show up, and it may change your life. Every person can make a difference.
Whether you hand someone a banana at a bike event or a t-shirt at the Walk to Cure Arthritis event, you’re special and your efforts are greatly appreciated by the recipients. Volunteering instills you with a desire to want to do more and more.
Try it once and you will be hooked.
Brian Vander Stoep
I spent my teens and twenties undiagnosed, explaining away my ailments as just part of growing up. At age 35, arthritis cropped up yet again. First I thought I’d simply pulled my groin.
At the start of the flare-up that day, I was filling-in at a school event for my brother-in-law. At the event, I had to ask my seven year-old niece to bear my weight and help me to a chair because I just couldn’t walk. I had to watch from the sideline that day. I’ll never forget how awful I felt that day. Later that night, my legs were just frozen. I couldn’t walk without severe pain. Two days later, the pain subsided. Fortunately, my brilliant doctor ignored my claims of a pulled groin and sent me for blood tests. I was diagnosed with ankylosing spondylitis shortly thereafter. Since then, however, it is amazing how many friends and family members I’ve found that struggle with other forms of arthritis as well.
I don’t know for sure that greater awareness would’ve resulted in an earlier diagnosis for me. Research and technology have certainly made huge gains since I was a teen.
Over the years, my wife, Kari and I (pictured top right) have both captained teams for the Seattle Jingle Bell Run/Walk. It is our fun way of creating a little competition among friends and motivating more people to join in with us. In addition, we are both active as members of the Washington Leadership Board and serve on the Bone Bash committee. This event is so fun for us. We invite friends and family to join us at our table, make a little money for the Arthritis Foundation and hopefully move one small step closer to a cure.