5 min read
by Harper Spero | 03/14/2019
When I was 27 years old, I found out that I needed to have a life-threatening surgery.
For four months, I’d been having trouble breathing. When I met with my doctor, she told me that I had a cyst the size of a golf ball in my right lung that required surgical removal. Except, it wasn’t so easy. I live with a rare immune deficiency called Hyper IgE (or Job’s syndrome). When I got a second opinion from the immunologist who, 17 years earlier, had diagnosed me with Hyper IgE, she told me that I couldn’t get the surgery — that I wouldn’t come out alive.
I was completely terrified and had no idea how to make this choice, so I got a third opinion from the infectious disease team at the National Institutes of Health (NIH). They told me that yes, it was definitely a risky surgery, and cited examples of people with my condition who had had major complications or died. Still, they were certain it was a surgery I needed to have.
So, seven years ago on March 5, 2012, I had a lobectomy and a quarter of my right lung was removed. It required two months of medical leave and a grueling recovery. My world was turned upside down, but the surgery was a success. I was grateful to be alive.
One year out, my mom and I agreed that we should celebrate. We invited my immediate family and best friends for a dinner at my parents’ apartment. A vegan chef I had met at a retreat earlier that year came over and cooked for us. The meal was delicious and I was so thankful for one more year of being alive. I wanted to share this experience with the people who stuck with me during this rocky time in my life.
On the second anniversary, the same group of us went bowling. It’s not about what we do or how we celebrate; it’s the acknowledgement that I’m alive and thriving. My body is certainly not the same as it was pre-surgery, but it’s functioning and it allows me to work, travel, and live my life.
Celebrating the anniversary of my surgery reminds me to be proud of my body and all it has been through. When I was in a friend’s wedding four years ago, I tried ona strapless bridesmaid dress in the store. I was uncomfortable enough being many sizes bigger than the other bridesmaids, and then the bride told me that the makeup artist could cover up the eight-inch scar on my back from the surgery.
“No thanks,” I responded. It wasn’t my problem if she didn’t consider my body perfect for her pictures — she chose me as a bridesmaid. This is me and this is my body. I was willing to swap out my signature bright red nail polish for photos, but I wasn’t about to hide the proof of what I had overcome.
For the last three years, I’ve spent my anniversary in Tel Aviv, my home away from home. The anniversary of my surgery is just a few weeks before my parents’ wedding anniversary. This year, when my parents talked about coming to visit me, I suggested they come for their anniversary, but my mom was more inclined to come for my surgery anniversary. This many years in, we don’t do anything crazy to celebrate, we just make sure to acknowledge it in some way.
When you have a chronic illness, it’s important to celebrate the small and big things. There are lots of challenges that come with living with a health issue. Whether your condition is visible or invisible, celebrating the time you’re grateful for can make the dark times feel a little more manageable.
Over the years, I’ve learned that there are so many different ways to mark the milestones:
Do something you love. Think about the activities and experiences you enjoy the most, and spend your time doing them. When managing a health issue, it’s easy to neglect the little things you love. This is an opportunity to do the things that light you up!
Travel. After a friend of mine froze her eggs, she took herself on a trip to Paris. This was her way of acknowledging that she did something for herself and her health.
Gather friends and family. Being with the people who know you best and who have supported you through your health journey is a great way to celebrate.
Give back. Many of my friends who have reached milestones in their health want to lend their support to others who are going through the same things they did. They’ve gotten involved at hospitals, raised awareness, and fundraised for causes they are passionate about.
Whether you have a medical condition or not, how do you celebrate you and your health, or the health of your loved ones?
Harper Spero is a business coach and consultant who specializes in working with individuals who want to live, work, and earn on their own terms. As someone who has managed an invisible illness for her entire life, she works with clients to find work-life balance, prioritize self-care, and discover the freedom that comes with entrepreneurship. In 2018, she launched the podcast Made Visible to help people with invisible illnesses (and those who care for them) feel more seen and heard. You can also follow Harper and her podcast on Instagram.
by Harper Spero