Jesse’s battle with generalized myasthenia gravis has been anything but straightforward. For the last decade, he and his family have navigated the ups and downs of this difficult, mercurial disease. Yet through the difficulties, he has found opportunity and growth, with the support of his family.
In honor of National Disability Employment Awareness Month, Jesse sat down with the MGFA to discuss how gMG has impacted his career, in ways both challenging and unexpectedly wonderful.
You started experiencing gMG symptoms at a time when most people are finding their footing in their careers. How did gMG impact your work life?
I was diagnosed with generalized myasthenia gravis in 2014. Before that, I was a project manager for a construction company in Atlanta. I had been doing that job for about a decade but decided to pursue a career as a firefighter and an EMT. I thought I had it all figured out… I would spend 2013 training and going through the education process to take the firefighter exam, and recruitment would start in 2014.
Right around the time of the exam, I started experiencing severe double vision. I even had double vision while I was driving to take the assessment test. I managed to pass the test, but it took everything in my body to get through it. I was hospitalized and diagnosed right after that, and everything in my life came to a halt.
After the gMG diagnosis, I was trying to figure out if I would be able to work again. I didn’t know that gMG would change my life so profoundly. I thought I would figure it out and quickly get my life back. gMG is difficult for most folks, but it changed my career forever.
What happened after your diagnosis?
I went through a very difficult period because I had always defined myself as a hard worker, in both senses – I worked hard, and I was used to doing hard, physical work. In addition to working in the construction industry, I was a landscaper back in the late 2000s, so I was always involved in work that required me to be physically fit.
After my diagnosis, I applied for disability, but I knew I’d have to find some kind of work – that’s just who I am – I need to be working and providing value.
So I started working on small engines in October 2014, after spending a month in the hospital. I built a little table out of pallets in my garage and started tinkering on my lawn mowers just for something to do. I thought, “Hmm, let me put an advertisement in Facebook Marketplace promoting my skill at working on engines.” I put it out there and folks started calling. One at a time, two at a time, then I had 10 pieces of equipment in my garage.
I did that work from 2014 to 2020, just tinkering with it as my health allowed. During this time, I was discovering a new normal. I had to find something that wasn’t going to be overwhelming. I wasn’t doing this work so much for the money but to keep my mind busy.
In 2016, I tried to go back to my old career. My old boss had started a company, and he invited me to work for him. I came into the office that first day, and even just answering phones… I had no idea how much stress your body takes on every day at work when you have gMG.
After just one day, it was too much for me.
In my mind, I could still work the way I used to, but I just could not physically engage anymore. Saying to myself that I could not do this work was very tough on me. It impacted me both emotionally and mentally.
You pivoted again when the COVID-19 pandemic hit in 2020. Tell us how COVID changed things for you and your family.
Things were scary. At the time, we had moved from Atlanta to South Georgia, where there wasn’t too much to prevent the spread of the virus. Having gMG, I was more vulnerable.
My wife had spent 20 years as a hair stylist, but she decided to come out of the salon to keep us safe. We didn’t know what we would do, how we would survive. But God makes everything happen. She and I started designing and painting earrings. We started on a cardboard box in our bedroom.
We began selling our designs online. We set up a website, and it started taking off. The jewelry business supported our home. It has helped us all to find our strengths and creativity.
You’d be amazed what you can do when you slow down… I don’t think we would have started the business without the pandemic. When you’re forced to slow down and retool, you can do something you never expected.
As difficult as this journey has been, what has it taught you?
I was raised to be the breadwinner, the head of the household. It’s humbling not to be able to fulfill that role. But I have realized that my wife has strength. I have taught my boys to take on some of the burden of helping at home and supporting our family.
I have always tried to be the dependable person, the one people can count on. I had to learn how to call on everyone else.
I have learned not to let my feelings get in my way, that it’s okay if I can’t be the breadwinner. If I spend all my energy on work or worrying, I will tire myself out, and I wouldn’t be able to be there for my boys in other ways, spiritually or emotionally.
What advice do you have for others living with gMG who want to continue to reach for their dreams?
Slow down. Slow your mind down and take a true assessment of yourself. Just be honest with what you can and can’t do. The intensity of the medical schedule when you have gMG, especially at the beginning, is overwhelming. I had so many appointments. So it’s not just the physical symptoms that can impact your work life – it’s the pace you have to keep up with your medical schedule.
Don’t let what you can’t do be a defeat. You are just retooling yourself. Look at what your strengths are, don’t look at what gMG has taken away from you. You are grieving a loss, but you didn’t lose your identity because you can’t do what you did before. Don’t beat yourself up so much. Don’t let yourself become your worst enemy.
Now our family is making jewelry. I would never have discovered the talents or abilities I have if I hadn’t HAD to try this. My family together can make something. Allowing others in – especially your family – may be a strength you never knew you had. Don’t be hung up on your past. Find out what you can do for your future.
I have changed so much since 2014. But what you lose physically, you can gain mentally, if you change your perspective and lean on your family for support.