A personal story from T1D Exchange co-founder and executive director Dana Ball
One year ago I received unexpected news that I had coronary artery disease and needed to have bypass surgery. I remember being told this news after six weeks of appointments, tests, and procedures that reminded me just how depressing and frustrating medical care can be when diagnosing a health issue. It also was incredibly humbling to someone who has always been a patient advocate—it was a good reminder that it’s much easier to advocate for people with medical issues than to have a medical issue.
The news of surgery was shocking. It seemed unreal to go into an exploratory procedure with everyone saying, “You are in great health, we’re not going to find anything, but if we do we can fix it when we’re in there.” All I heard was “Are you saying I have an issue?” and “What do you mean you can fix it?”
I remember suddenly feeling a lot of unfamiliar feelings: I was nervous, and felt fear, anxiety, and something completely new—vulnerable. The procedure ended earlier than expected because there was no quick fix. I needed open-heart surgery, so I was sent home to get my personal and professional affairs in order.
From Surgery to Recovery: A Physical and Emotional Journey
The good news is that all went well…after I did a crash course on shock, anger, and acceptance. My surgery couldn’t have gone better and I was up walking in just 48 hours, home in four days and although I have never felt more vulnerable and fragile, my recovery was fairly seamless (and fortunately my scar is minimal!). Each day was a little easier and as my physical strength returned, so did my psychological health—all was good until—I received a white box with a heart monitor.
Roughly eight months after surgery I was asked to wear a heart monitor to confirm there were no rhythm issues, a common side-effect after by-pass surgery. I happily agreed and waited for my device, something I ironically gave no thought to despite all my years working in type 1 diabetes and witnessing the importance of insulin pumps and CGMs.
That is, I gave it no thought until the box came, I opened it and suddenly started to think “How am I going wear this? How will I sleep with this? What will people say when they see the device on my belt?” I admit, I felt anxious and sad to think about having to wear the device and then, I started to feel angry. I put the box on a shelf and started saying, “I’ll wait until I don’t have to travel” or “this week isn’t a good week.” The truth is the device was a reminder of my diagnosis and of my feeling vulnerable and fragile. I didn’t want to deal with those feelings again. The box stayed on the shelf until someone intervened.
Sometimes You Just Need a Helpful Push
My someone was my mother-in-law, a beautiful, loving, persistent, and strong woman who called me one day and said,
“Are you wearing your monitor?”
Me: “Not yet.”
Her: “You need to get that box, put it on and get on with it. Come on, you know better. Tonight, right?”
I said yes, but it still took me four days and when I pulled it out of the box and prepared to call tech support, I welled up and was tempted to put it away.
I didn’t like those feelings, I didn’t want to wear something and I didn’t know what to expect,
but I did as I was told and got it hooked up,
figured out how to sleep through the night and wore it for thirty days.
The result? Good news—there were no issues.
My experience has created a new appreciation and respect for my friends and family with T1D that wear medical devices. I never understood the real psychological impact of a medical issue, the inconvenience of having to spend so much time thinking about, planning and navigating the impact on one’s life and the lives of those you love.
I remain in awe of our T1D community that deals with their diabetes every hour of every day. You continue to inspire me and I look forward to continuing to serve you.
Like what you hear from Dana? Executive Director and Co-Founder Dana Ball is now a regular contributing writer for Thrive Global, a National online publication founded by Ariana Huffington. You can read his first editorial contribution titled, “Sometimes You Find a Career. Other Times It Finds You,” on the site here: http://bit.ly/2r6rSsI. You can also follow Dana on Medium to read all of his stories: https://medium.com/@DanaBall.