My journey with lymphedema
Being diagnoses with primary lymphedema at the tender young age of 5, I’m sure was heart-breaking for my parents. We were fortunate to get into a specialized Children’s hospital in Toronto, Ontario. We would drive two hours each way twice a year for check-ups, as well as get measured and fitted for stockings. Looking back, it was so nice to have a team all in one place where I could get an understanding of how my body was coping with lymphedema.
The experience of being only one of few kids with Primary Lymphedema, meant I didn’t have many others to ask how they coped and share an experience with. I felt alone at times and strangely different from my friends and family. The health care team at the children’s hospital taught me the importance of self-care, such as keeping my skin soft, wearing compression everyday, and that exercise would be key in managing my swelling. What was missing was the community part that I am now trying to build with Lymph Well. A place to learn and connect with other Lymphedema patients from around the world. To share tips, tricks, lymphie hacks, lymphie jokes, and life lessons with each other. Walking the path alone can be lonely and difficult. Knowing there are others out there like me with Lymphedema and bringing them together is a beautiful thing!
WATER ACTIVITY - MY SAVING GRACE
They encouraged me to choose a water sport that I would like as they thought the water pressure would be helpful for the swelling. I loved swimming! We lived on the lake and I sooo enjoyed the summer swimming jumping off my dock into the fresh clean water. Soon I was part of a Synchronized swim team, swimming several days a week. The water definitely helped my swelling, and I appreciated the freedom time of being stocking free in the water. What I wasn’t prepared for, was the bullying from both my peers and officials in the sport. Synchronized swimming is evaluated on both skill and aesthetic. How you look matters in the sport. I always got docked marks because I couldn’t point or flex my foot in the way I was supposed to, and they thought I could just bend or stretch it further if I really wanted to. But, I found other parts to love about it such as swimming to music. It really was like ballet in the water! A nice evolution in a way for myself because before Lymphedema appeared around age 5-1/2, I was an active child, always dancing on my tip toes around the house. My parents had enrolled me in a ballet class in my town and I loved it. I was devastated when my swollen foot would no longer fit into my ballet shoes, and the teacher thought it would be too difficult to do without shoes and with my swelling. I had to give it up. I still remember that moment. It might be a different case for young children today and I hope that there would be greater accommodations for kids with disabilities. You have to remember, this was the early 1980s and the disability movement in Canada wasn’t getting much attention yet.
FINDING MYSELF THROUGH SPORTS
If you feel heartbroken that your body has changed and is not the same since lymphedema began in your body, I know what it feels like.
I’ve been there and am still there some days. In my adult years, I learned about giving myself the space to grieve my former body, and this has been a very healing practice for me. I spent much of my childhood hiding my leg and trying to blend in. I wanted to just be a kid and do all the sports and games and activities the other kids did, and for the most part I did, which was freeing in itself. I eventually stopped competitive swimming. I hated my coach who yelled at the top of her lungs at us, and by grade 8 I was finding it hard to keep up with school work and my lymphedema care, so I opted to join sports at my high school instead. I played field hockey, soccer, track, volleyball, badminton, and enjoyed hiking and cross-country skiing with my family. Not only did this keep my swelling from progressing too quickly, but mentally it was fulfilling playing sports with my friends and peers and prove to myself I could do sports as well as someone without Lymphedema. It boosted my confidence in a way that Synchro swimming hadn’t been able to.
The hardest part growing up with condition that is visible is a lot of the time was the teasing, starring and lack of understanding how the disease impacted my life. At times you felt very visible and noticed yet your disease made you feel invisible because there was so little understanding of it or accommodations for your challenges.
STEPPING INTO ADVOCACY
It was this lack of understanding that really made me into the advocate I am today.
I began to advocate for my needs and educating my peers, teachers, and eventually employers by my mid twenties on what was Lymphedema and how it affected me. Not only was this beneficial for me, but it was helpful to others too. I remember sitting on a Toronto transit bus one day on my way to work at a publishing house I worked at in my mid twenties. It was hot and I was feeling brave that day and decided to wear a skirt. A little girl about the age of 5 and her mom sat down across from me. I noticed that the little girl was starring at my leg and I caught her eye. I asked her “are you wondering about my stocking? And she nodded yes and began to ask me questions, like “why was I only wearing one sock?” Her mother quickly got embarrassed and asked her daughter to shhh. I reassured her it was okay to ask me questions. I could see her daughter was curious and meant no harm and that it is normal to wonder about differences we see in each other. I would rather she ask than just stare and never know what it was about. She relaxed and was grateful that I was so open about my disease and appreciated the opportunity to learn more about it.
I got off the bus that day feeling a lot lighter and happier knowing that two more people out there now knew what lymphedema was and I was grateful that I got to be a part of that. I smiled to myself as I walked to my little apartment realizing how far I had come from the shy young girl that wanted to hide in long pants even when it was hot out so no one would ask questions and wished i had the courage and confidence to just be a kid. Everything happens in due time and our experiences constantly shape us. I was now, finding my way in the world and learning to live well with Lymphedema on my own terms as an advocate and educator!
Love and light, Amy
