Chad Leonard: Beyond My Personal Battle with Epilepsy, Lupus, and More
This blog post is the first in a series of storytelling pieces, “Beyond My Personal Battle”. The interview-based series is dedicated to sharing an inside view of individual lives working to grow and thrive beyond the diverse challenges of illness or disability. Interviews are conducted by Mary Brimmer.
What is your name and health condition?
My name is Chad Leonard and I’m from Upstate New York. I was diagnosed with Lupus, Epilepsy, chronic pain; and recently have been diagnosed with Antiphospholipid Syndrome. I’ve also undergone double brain surgery.
What was your journey to diagnosis like?
I was diagnosed with Lupus and Epilepsy when I was fourteen years old after having seizures. I was the first white, adolescent male in the northeast to be diagnosed with Lupus. No one in my family has it. Often, it’s hard to diagnose because it can lie dormant, but in my case, my kidneys were shutting down and my brain was swelling so they were able to get a diagnosis of Lupus quickly. I was on chemo-therapy and medications for almost two years. Although I was treated, I had the repercussions of what happened to my organs.
In my brain, the neurons criss-crossed as they healed and started misfiring, causing grand mal seizures. I was able to get on medication that controlled them and went on with life, but I was having what is called refractory epilepsy, where the brain erodes over time. I had lost memory and my personality was changing. I thought, “Am I just getting old? Is this what happens when you turn thirty?” I thought maybe that was just how I was becoming, but no, parts of my brain were shutting down. The doctors said, “We can’t make you have brain surgery, but that’s your option,” so I said right then, “I think I’ll have brain surgery.” They’d be taking out a major part of my brain, the front left temporal lobe which controls memory, among other major brain functions. I would probably lose 30-40% of my memory and would have to adapt. That was a risk I was willing to take.
This June will be my second year post-surgery. I’m seizure-free so far, but you never lose that title of “epileptic”. Right after the surgery, I remember them asking me to tell me my mother’s name, who was sitting right next to me. I knew it was my mom, in my heart, but my brain could not cognitively retrieve her name. When I try to retrieve words, sometimes they’re just not there. It’s like cognitive relapse. My brain tries to go to the place that’s missing now and it’s like “Hey, we’re over here on the creative side.” I’m high emotion now and am very happy a lot.
I’ve also received a new diagnosis called anti-phospholipid. I had massive blood clotting that shut down my spleen. It’s a super rare genetic disorder, but as I’ve gotten older, I’ve finally understood why it’s happened to me.
What kind of changes has brain surgery brought to your life and perspective?
I was misdirected and in a wrong place, stuck with my head down and in my thoughts. But, boy, when you go to the edge of death, people you don’t even know come around to support. My business and medical costs took everything, yet everyone was willing to give everything, which made me realize what human life is. It made me realize is that I have to redirect my thoughts and find a sense of purpose. Giving back is so much more rewarding and fulfilling than anything else. To be able to redirect my mind, talk to people and feel that emotion...it fills me with a natural high. You realize when you’re done [giving back], “‘Wow, I just spent an hour doing something and didn’t think about how my body was feeling or what it was doing. I want more of that.”’
For the last two years it’s been incredible. When I had brain surgery, they took out my front temporal lobe. It controls the right side motor skills, memory, senses, and speech. But the brain is incredible and it adapts. The surgery enhanced my artistic side and brought out my creativity. I had to write notes for memory and all of a sudden poetry started coming out. Words would jump out to me and my brain would just tell me to use them. I’ve also come to love photography. When I see things, my body gets this rush, like when the hair on the back of your neck stands up. I have no idea why, but I have to take a picture.
What kind of support were you receiving during such a difficult time?
I grew up in a great family system and with a mom who never left my side at the hospital. When I was diagnosed with Lupus, I think it was almost sixty days in the hospital and then I was released and I woke up the next morning and had a grand mal seizure. I was airlifted back to the hospital and she supported me when I was there for another forty-five days. She’s just that type of mom and she’s just always been there for me. It’s a close connection.
I’ve always had an outgoing personality. But growing up, I didn’t feel that sense of true connection. Recently, I came to understand what I’m living for – to have a love for others and give them the same connection and care that I’ve received. Because I run on the right side of my brain now, I am more aware of the emotions of those around me and want to help.
How do you manage the vulnerability that comes with sharing your story so openly?
Before, I would struggle if I tried to share something about myself. My emotional roots were way too connected to it. I’ve learned that it’s easy to control emotion and have balance and now I can share my story and inspire others. I can put myself back in the moment and go beyond to see where it’s brought me. I know that that may have been the valley of the time, but it brought me to the summit. Understand the valley, but tell about it and know that you’re in the summit of it. That’s what I’ve realized now. I think “Yeah, I’ve had that happen, but here are the results.” Talk about what happened, but keep your emotions in the state of the results.
Do you think there are any kind of misconceptions or stigma related to your illness? How have you been able to challenge them?
I do have an invisible illness and look very healthy on the outside. People hear me talk with complex words and I have a hard time being in more than one train of thought. Many people know my career history and now see that I’m not working and am in recovery. According to all my doctors, I’m disabled, but to me, I’ve been enabled for something different. I know the stigmas and challenges are going to build me in a different way. My goal for myself is to do what my advisors and doctors tell me and what my true self knows is best.
Do you have any advice you would give to others?
When medical challenges come into our lives we get overwhelmed so quickly, but even though I’m recovering from brain surgery and have a new diagnosis, these are not even my tertiary focus. They are only part of my life and routine. Every day, I wake up and ask myself where my focus lies and write down my primary, secondary and tertiary [focuses]. I trust that everything is happening for a purpose and know it will have a ripple effect on others. It’s easy to get caught up in things like worrying or needing answers or a diagnosis, but when it overwhelms and consumes so much of your focus, you’re missing the beauty passing by. You’re not present and are missing a moment to help someone else. Make an effective change and leave a legacy. What are you going to do to make a difference?
FORGET ME NOT
A poem by Chad Leonard
A hand prevailing through the darkness,
Made all the fears become removed
Worries once availing all embarkments,
But then these comforts made me bloom
Descending hope was not forgotten,
Though shadows still are seen before
So ascending strength will come from ruin,
For unforgotten love has been restored