Category Archives: arthritis camp

Light from Disability

This was written for Friends Journal’s March 2016 issue; unfortunately, they chose not to publish it.


June, 2005. I’m sitting at my computer, taking an online quiz about what religion best matches my personal beliefs. Raised as a Roman Catholic, I had left the church 7 years prior due to theological disagreements (particularly the importance of the Pope, the discrimination against women, and the church’s stance on abortion and LGBT rights). Since then, I had been searching for a new religious home. Taking this quiz was a last ditch effort. I’d attended other Christian churches, but none of them felt like communities I could be part of. The results of the quiz came back as 100% Liberal Quaker. I’m excited and eager to find out more about this religion, so I search for a Meeting… only to find the nearest one is half an hour away, which is further away than I can drive.

I’ve had juvenile Rheumatoid Arthritis (jRA) in all of my joints since I was an infant. Growing up with jRA, the disease made me an automatic “other”. Juvenile Rheumatoid Arthritis (also known as “juvenile Idiopathic Arthritis”) is an autoimmune disease, which means the immune system targets part of the body. JRA is an inflammatory condition that causes swelling and pain primarily in the joints and musculoskeletal system; left untreated, this disease can result in permanent joint deformities and often, as in my case, can lead to disability. When I was growing up, the primary treatments available were large doses of aspirin and physical/occupational therapy. In elementary school, I took the special ed bus and often needed the assistance of an aide. In middle school, I often had physical therapy during and instead of recess.

While I never hesitated to tell people about my jRA—it was impossible to hide it from people I would be spending a lot of time with—I always felt like it was something I had to “overcome”. Not only as an obstacle to my education, but as an obstacle to friendship and relationships. My jRA was something I had to make up for.

Except for 6 days every summer, when I went to Arthritis Camp. Camp Dartmouth-Hitchcock was a summer camp in New England only for kids with arthritis or similar autoimmune conditions like lupus. For those 6 days, my jRA wasn’t something to overcome; it was something that united us. It made me a part of the group instead of apart from the group.

At Arthritis Camp, each evening before heading off to bed, we would sit in a circle in silence. We met in a big, old, drafty barn. The smell of wood and age became as soothing as the people around me, my friends and family for those 6 days. And out of that silence, sometimes, we would speak. Though camp wasn’t explicitly religious, I had never felt Spirit’s presence, love, and acceptance more powerfully than in those nightly circles.

Every year at camp, an award was given out to the camper that best exemplified the spirit of Dr. Joshua Burnett, who founded Arthritis Camp. Every year, I dreamed of winning that award; up until my last year at camp, when I gave up on winning the award and focused instead on being truly present with my fellow campers and for each of my last moments at camp. It was August, 1999; I was 17 years old. My right wrist, which would be my first joint surgery just the next summer, was starting to fail. I had just finished my junior year of high school, which had been one of the most painful years of my life up to that point.

The award was given out at a formal dinner the last night of camp. My last year at camp, the director stood and read the award:

“Dr. Joshua Burnett, a family physician with an ear for the need of his patients, became the first Rheumatologist in the state after hearing of a need. He willingly returned to school to learn to provide this specialized care for this patients. As a Staff Rheumatologist at Dartmouth-Hitchcock Medical Center he saw the need for a camp for children with arthritis. A place they could go and enjoy camping as any other child their age. It was his unselfish gift of caring for others that we honor with this award.

“Each year one camper is voted on by their peers as the camper that exemplifies the spirit of Dr. Burnett. This camper is caring and unselfish in his or her interaction with their fellow campers.”

And then, she said my name, and I became overwhelmed with joy and gratitude. I felt that being given that award showed me the best person I could be. It showed me how the power of true community could support and change a life.

That night, as we gathered one last time in the circle, a fire gently lighting the otherwise dark barn, I was filled with joy and despair. How could I leave this place? Would I ever find such a community again? One by one, we lit our candles from the flame of the fireplace, passing our light from one to the other. We spoke our truths. We cried together. And I knew that the strength I was given at Arthritis Camp would empower me for the rest of my life.

It was September of 2005 before I was finally able to convince my husband to drive me to the nearest Friends Meeting—Third Haven Friends Meeting in Easton, Maryland. We drove through their driveway, surrounded by pine trees, sunlight sparkling through the needles. We parked and followed the small stream of people into their old Meeting House. And when I saw the old Meeting House, my breath was taken away.

Walking into that building, that 300+ year old wooden building where sunlight streamed through open windows and doors, felt like returning to Arthritis Camp. That building felt just like the barn at camp. It smelled like home. I felt like I was home.

We sat, and I struggled to contain my joy. Words rose out of the silence, just like words rising at those evening gatherings at camp. These words were powerful. They were authentic. They struck that inner chord in my soul that knows Truth. The hour passed quickly, and I knew that finally, I had found my religious home.
But on the ride home, it become obvious that my husband had not had the same experience. While I found the silence liberating, he found it boring. He agreed to drive me to Meeting for Worship again, but he would not be attending with me. I was disappointed. I wanted to become a part of this Meeting, to once again participate in that communion of Spirit.

I managed to convince my husband to drive me to Meeting one more time. And at that Meeting for Worship, two Friends—two strangers—offered to drive me when they heard about my need for a ride. These Friends became friends, and they drove me to Meeting for several years. It was their willingness to offer assistance that allowed me to join Third Haven Friends Meeting as an official member in August, 2006. Though these f/Friends have since moved away, my husband has seen how important attending Meeting is to me and is more willing to drive me than he once was. Being a member of Third Haven has challenged me to live up to the Quaker testimonies, to question, to believe, and to be part of a community that is not always perfect, but one in which the Light is yet present.

Though it’s been many years since I last attended Arthritis Camp, the person I was during that final week of camp showed me the best person I can be. Each day, I try to live up to that award. Not doing so would mean I am not honoring the camp that showed me what true community, love, and caring could be like.

For myself, I have that award to strive towards. For my Meeting community, I have the loving, accepting, and caring camp community to work toward. It is the combination of these two elements, the divine and the active, that I most wish to share with my Meeting community.

And it is my disability that made this possible.

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Filed under arthritis camp, belief, meeting for worship, quakerism, third haven, worship

Finding Balance

When I was in 8th grade, I had a theory about how the world worked. The theory was that there was a finite, definite amount of suffering and happiness in the world, and that, consequently, the more I suffered, the less others would suffer. In a way, this gave my pain of that year a purpose: after all, if I wasn’t suffering, that would mean someone else would be.

8th grade was a hard year for me. I’d had a falling out with most of my friends from the previous year and was left with only 2, other outcasts who it was social suicide to spend too much time with. But they were good, true friends, and I wish I had treated them better before I had no other choice. In addition to social things, there was family turmoil. And, of course, there was always my Juvenile Rheumatoid Arthritis looming in the background.

In retrospect, I suspect this worldview came from a desire to find meaning in my suffering. At the time, my faith was very strongly Christian, if not completely in line with the Catholic Church. But Jesus was very important to me and I related very strongly with the suffering he went through. If my suffering was to prevent others from suffering, then it had a purpose, a meaning, like Jesus’s suffering did. After all, Jesus suffered on the cross and died so that we could be free from sin. Like Jesus, I was willing to suffer so that others wouldn’t have to. And that connection and belief made it more bearable.

But the flip-side to this worldview is very, very dangerous, especially to a kid permeated with the guilt and sin teachings of the Catholic Church. Believing that my suffering would prevent someone else’s also meant that if I was happy, I was actively causing someone else to suffer.

By the end of the year, I’d fallen into a pretty deep depression that I only made it out of because of a wonderful experience that year at Arthritis Camp.

But the desire to take on another’s suffering is at the heart of the Bodhisattva vow I took a month ago. The difference now is that I’m a lot more spiritually and emotionally capable of doing so; though even now, I’m not fully able to take on the suffering of all beings, as my vow requires. I know that, in a very real way, I–and all others–are already Buddhas, we already have bodhichitta/Buddha-nature within us, but I, like most others, have not fully realized that. I have not, as Quakers would say, come to know that experientially.

The other difference is that I don’t believe in the same worldview. I don’t believe that my happiness actively causes someone else to suffer, or that my pain prevents another from suffering, nor that there is a finite, definite amount of suffering and happiness in the world.

The point I want to make is that finding balance is essential. One cannot take on the pain of the world before one is able. So often, we try to do too much. This is especially true of people who volunteer their time who often feel obligated to do more than they can because someone has to do it. But one cannot offer more than one is able to do. For example, if a charity needed someone, for whatever obscure reason, to perform a handstand and I volunteered to do so, I would then be put in a position to do something that’s not physically possible for me to do, no matter how much I desired to help out and do it.

And there’s the other side of this, also, when we refuse to do what we can because we assume there are others who are more able or more willing to do so… or because we just, ultimately, don’t want to get any more involved.

I am lucky that both of my religions offer concrete, solid practices for finding this balance. As a Buddhist, meditation allows me to gain Right Understanding. And as a Quaker, waiting on God, meditative listening, and the process of discernment allows me to figure out what I can and can’t do.

And there’s always the push, also, that thrusts one out of one’s comfort zone and into a whole new place, that makes one realize that one’s limits are quite a bit further away than one thought.

What methods of finding balance do you use?

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Filed under arthritis camp, buddhism, catholicism, daily life, discernment, faith, meditation, quakerism

Baptized by Tears

I finally made it to Meeting for Worship this morning, after not being able to make it for a couple of weeks in a row and only sporadically over the last few months. I’m so glad I was able to go. Third Haven Meeting has two meetinghouses: one built in the 1800s, and one built in the 1600s. The latter doesn’t have electricity and is only used during the summer and late spring, if it’s warm enough. Today was the first day this year that Meeting for Worship was held in the “old” meetinghouse.

The first time I attended Meeting for Worship, it was in that meetinghouse. Part of the reason I felt so at home right away was that the old meetinghouse reminded me of the big old barn from Arthritis Camp, which also had no electricity and big slabs of wood. It almost feels like being inside a tree: like we’re at once part of and separated from the natural environment. So I was filled with joy to be back in that sacred space, surrounded by Friends and the smell of centuries-old wood.

I’d been feeling pretty good about how I was dealing with Grandpa’s death. I thought the tears were over. But within 10 minutes of sitting in that warm silence, I felt my eyes begin to water. When the first person stood up to give her message about what a joy it was to be back in this meetinghouse and how it filled her with hope, even during a difficult time for her and her family, I was broken open. The second message was about how the waiting is an active waiting and how the true Shepherd will give us what we need. That broke me open even more.

The tears were sliding down my face, but I did not raise my hands to wipe them. I let them cleanse me and felt like I was being baptized by them. I thought a lot about Jesus and his crucifixion (I’ve been wondering something for a couple of days now, but I’m going to reread the Gospels before I post anything about it, if at all). I thought about Grandpa and how odd it is that I can remember his voice so well, but can’t hear him saying anything.

I felt the Meeting begin to come to a close. Then, my heart started pounding. “Are you kidding?” I thought. “I’m crying here and I haven’t received a message!” The pounding continued. Finally, I stood up, not knowing what the message would be. I remembered a song we used to sing at Arthritis Camp. Inwardly, I rolled my eyes, and told God that he can’t be serious. I can’t possibly sing when I’m crying like this!

But he was. So, I opened my mouth and started to sing:

It’s a pleasure to know you,” I croaked out. “It’s a comfort to see you smile.” I stopped and tried to catch my breath, and started again.

“It’s a pleasure to know you. It’s a comfort to see you smile.
It’s a pleasure to know we’ll share the road awhile.
But the pleasure is fleeting, and the comforts are far between.
It’s a pleasure to know you, and the comforts you bring.”

I sat down and the pounding stopped.

I cannot express my gratitude for my Meeting community, that it’s filled with the most wonderful people and that the buildings themselves connect with me the way they do.

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Filed under arthritis camp, grief, Jesus, meeting for worship, quakerism, sacraments, third haven

Images

In front of my desk on the wall hang several items. They hang in this place of honor because these items inspire me and make me happy. Recently, Marshall Massey added my blog to his recommended blogs list and made this post about the Quaker blogmass community. Like the Quaker blog entries I read on daily from Quaker Quaker, these images not only inspire me, but remind me of what I value most in life and what is most important to me.

Let me tell you about these images, of which there are 6. In the upper right is a portrait of me my mom’s best friend drew when I was about 6 years old. The younger me is smiling honestly, though hesitantly. She reminds me of the dreams I had at that age and that feeling with sheer abandon is not only okay, but wonderful.

Left of her is a picture frame that contains 8 pictures. In the upper right is a picture of my mom with my niece and stepnephew, who are also displayed, on their own, to the left and left below. Under that image is a picture of me at age 9 holding a very young Siamese cat named Sugar. Sugar is now 16 years old and has been with me through thick and thin. She’s been there for me at times when no one else could possibly calm me the way she can. She inspires me daily about love. The leftmost two pictures in the frame are of me and my husband, one right after our wedding and one at our 2nd wedding reception (we had 3). The two next to that are also of family members, one with his sister and my father’s fiancé and one of Rob, me, my sister (very pregnant at the time), my father, and his fiancé at Christmas Eve 2 years ago.

The bottom right image is a diploma from Camp Dartmouth Hitchcock, a camp for kids with arthritis that I attended for 8 years. More about that camp in a moment. In the middle on the bottom row are two calendars, one of young baby animals and one of cats. In the bottom left corner is the image of which I am most proud, even moreso than my college diploma (which is not even hanging on this important wall).

This image is the Joshua Burnett Award, from Camp Dartmouth Hitchcock. Here is what the certificate says:

Dr. Joshua Burnett, a family physician with an ear for the need of his patients, became the first Rheumatologist in the state after hearing of a need. He willingly returned to school to learn to provide this specialized care for this patients. As a Staff Rheumatologist at Dartmouth-Hitchcock Medical Center he saw the need for a camp for children with arthritis. A place they could go and enjoy camping as any other child their age. It was his unselfish gift of caring for others that we honor with this award.

Each year one camper is voted on by their peers as the camper that exemplifies the spirit of Dr. Burnett. This camper is caring and unselfish in his or her interaction with their fellow campers.

Being given that award showed me the best person I could be. I had dreamed of winning that award each previous year at camp, but I had given up on my last year. Though I was not the person I am today, the person I was during that week of camp was the best person I can ever hope to be. Each day I try to live up to that award. For I know that for each day that I do not live up to that award, I am not honoring the camp that showed me what true community, love, and caring is like.

For myself, I have that award to strive towards. For my Meeting community, I have the loving, accepting, and caring community of camp to work towards. Each evening before heading off to bed, we would sit in a circle in silence. Sometimes, we would speak. Though camp wasn’t a religious camp and religion was never discussed, I have never felt God’s presence, Jesus’s love, and the Spirit’s acceptance more powerfully than I have in those nightly circles. It is the combination of these two elements, the divine and the active, that I most wish to share with my Meeting community.

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Filed under arthritis camp, compassion, goals, Holy Spirit, images, inspirations, Jesus, meeting for worship, quakerism, speak and listen with love, Sugar, third haven