Another article previously published under “Featured Adult: Rebekah Palmer’s Story” in The Cystinosis Advocate/ Volume 10, Issue 1/ Spring and Summer 2017:
I feel an obstacle in being the adult patient of a rare disease is the anticipation that time is running out. As a child and young teen, this wasn’t so much of a problem, but more of an incentive to live with every fiber of my being. Like most children and young teens, the day I would be an adult seemed so far away. Numbers like age 13 and age 18 and age 30 simply were numbers in a reality I had no reason to believe I would ever exist in.
At age 13, life got a little more complicated for me, as I was a year out from my kidney transplant and recently in remission from B-Cell lymphoma cancer. There were lots of moments in my day when I wondered what I would be able to do once high school was completed. Many times I would lie on the couch, thinking what am I here to do? My body is so worn out already– will I ever be able to do all my mother does in one day? I get tired just after folding laundry! And she goes to work and washes the dishes all in the same day!
At age 18, I headed off to college with a few of my peers. Working an 8 hour shift in addition to classes created extra fatigue and gastrointestinal problems, so I was taken down to part time hours. The lurking anxiety of “this could be my last day” was becoming more of a force to be reckoned with when my body would limit my physical activity. During student teaching, my health was again tested as working a full teaching day (8:15 am-3:30 pm) would cause fatigue, migraines and the ability to catch any bug floating around the school. I had better quality of life working half days. I felt like my life was over because I could not put in the hours many single adults were contributing to the work force. I began to experience heightened feelings of boredom, fear, sadness, panic and purposelessness after college graduation at the age of 23. Time had a more urgent feel to put something lasting and impactful onto the world in case I left it soon.
At age 25, I did the thing I thought would leave the most to humankind: I published a book I had written in high school. Now, I felt like I had nothing more of value to offer and there were large portions of my day spent in holding back worry and fear from my mind’s forefront. I had written in a college freshman English paper that my life’s goal was to publish a book. Instead of making more writing goals at that time, I allowed my depression and anxiety to consume me. Why get a part time job? Why write another book? Why keep up this pretense of finding a spouse? I was only going to be dead soon.
There were a few years of hope as I was in a relationship that had goals towards marriage. This only increased my fear as I felt marriage would be the last thing I ever did in this life. The relationship eventually broke up, which caused a different kind of fear as I looked towards more career oriented goals.
I began to feel utterly useless to my family as I worked volunteer jobs instead of paid jobs. I had attempted paid part time work, but this caused financial problems with Social Security and more health problems when work was scheduled every consecutive day versus every other day or just in the evenings.
What really helped my uncomfortable and painful feelings was learning to see living in my rare disease body not as a ticking time bomb or inconvenience to society, but as a different way of teaching other people how to love and have hope, patience, and joy. How did I use my negative feelings to create more positive thoughts? Well, I ended up finding an objective therapist and with her help in realizing why these feelings caused upsetting thoughts, I was able to put forth a better effort into living in the present:
- Having feelings like boredom, fear, sadness, panic, and purposelessness forced me to think about what I truly find important in life.
- I realized what’s truly important in this life doesn’t always make money.
- What are some things I can do with my time that those who are tied to a full time job cannot? My answer to this question varies but I find getting out into the community and giving my time to necessary local causes is a big deal for me and others.
- What interactions and connections can I make with other people here, right now? I have time to take that tap dance class or audition for that play or attend that political rally.
- Sharing thoughts, feelings, and experiences with others can cause a great sense of accomplishment and community and reason to live.
I honestly believe a huge step in tackling the obstacle of limited time in rare disease is to have an engaging and helpful support group. As I am nearing 30, I still schedule regular appointments with my therapist. Rare disease aside, life wasn’t meant to be lived in a vacuum and if you are single like me, this doesn’t mean you can’t have supportive relationships. Getting out and engaging with others in friendly ways goes a long way to living your life, many times beyond what a romantic tie might bring. I still have my parents and friends in my life, and along with my therapist, life as a whole has become less of an emotional roller coaster and more of a road with bumps along the way.