Joy: The Unlikely Choice
I was staggering as I made my way to the car, disoriented and weak. Fumbling with my keys, I clicked unlock, opened the door and collapsed into the driver seat. I began to hyperventilate uncontrollably, each shaky breath becoming more and more erratic. Everything around me began to spin as I lost feeling in both my hands.
My fingers began to curl into themselves, my face went limp and numb. In a frantic blitz of adrenaline, I jumped out of the car and spun around to see one of my friends standing there looking concerned. I slurred out in a long groaning voice, “I need to go to the hospital.”
There were several shouts across the parking lot calling for help, as people around me dug through my car for my travel bag containing my medical information. Focusing all my energy on staying lucid and conscious, I slung my bag over my shoulder with my arms seizing up to my elbows. They helped into the car and everything went numb. It was around 4:15 in the afternoon. May 9th, 2015.
That was the day I lost my independence.
Our lives are often marked by a few defining moments. Accomplishments, milestones and special days we will never forget. I like to describe my journey through chronic illness as before and after the seizure. It lasted close to an hour from the moment it started to the moment when the convulsing ceased. Even still I did not regain full motor skills and speech until I left the emergency room in the early hours of the morning almost 10 hours later. It took almost a week to regain strength enough to simply stand outside without feeling like passing out.
It may have been just one day, but even as I relive it to write this, I realize how much raw emotion I still carry from the events of that day. I remember being in the MRI room lying on the gurney. This machine surrounding me chirped and clanked as tears streamed down my neck thinking about my mom getting the phone call in the checkout aisle of Bath and Bodyworks. Running out the door and leaving a shopping cart full of things she was buying for herself. She never buys things for herself. And she wouldn’t that day either.
But the emotions I still carry today aren’t pinned up from an event that exists in a vacuum, they largely exist because of how that day impacted my life forever.
Just one day before I was working full time, living with a good friend of mine, physically active, riding over 100 miles a month on my distance long board, and making plans for marriage with my girlfriend. I was living my life the way I felt like I was supposed to. And even though the precursors of my sickness had been building for years, even after receiving my Lyme disease diagnosis two months prior, nothing was holding me back from the endless possibilities that life had before me…so I thought.
Just one day after the seizure I was living with my parents, making phone calls, and cancelling plans. I wasn’t allowed to drive or even be at home without supervision. I was losing hope. I was losing my mind. I was losing my life.
I did a lot of thinking that week after my seizure. As I handed over my hopes and plans one at a time to my new reality, I had to make a choice to not hand over my joy no matter what.
A lot of people ask me how I am able to maintain my positive outlook on life despite my illness. I simply tell them, “If you don’t stay positive, you lose.” Losing just isn’t on my to-do list.
Back when I was “invincible” and “care-free” before my diagnosis, I was living my life with my whole future vividly before me as I marched towards my dreams. And while I miss having that outlook, I now find that outlook undesirable. In the same way that living in the past is a dangerous choice, I believe living in the future can be just as harmful. I have learned to live within the bounds of today; one day at a time.
As a Christian, I have had seasons of life that have challenged my faith and wellbeing. I, like many, thought that one day, I would hit this magical level of faith were I would be so fortified and steadfast that nothing would be able to challenge my faith. I would be rock solid like so many of the men that I look up to — men who appear to be wise and stable on the outside. But I came to realize that on the inside, we are all hurting, we are all broken. Being broken doesn’t mean you ‘need fixing,’ it means you are in a position to grow, and that stretches out over the emotional, spiritual and mental parts of who we are. The conditions of this life, our brokenness being one of them, limit us to live one day at a time.
When I live every day for itself, I am able to take on the challenges that life and Lyme throw at me. I am able to have joy even when happiness is nowhere to be found. Joy is not an emotion, a feeling, or anything subject to our circumstance. It’s a choice.
Still, I catch myself wondering what would have been. Every day in fact. Literally.
These days, I am at a very odd threshold. I am a functioning “Lymie.” That means that I am healthy enough to carry on with normal life, but everything I do is in some way affected and limited by my illness, at times completely hindered. Everything I do is calculated, taken into consideration, and executed within limits.
By occupation, I am a youth pastor at a church. It’s a high energy, high responsibility and, at times, high stress position. But I wouldn’t trade it for anything. I don’t view it as a job; I see it as what I’m meant to do. But the constant reminders that I’m living with chronic illness are everywhere. There are many late nights when my head finally hits the pillow and wonder, “How much longer can I do this?”
My hope extends beyond the thought of being healthy again. What gives me hope is knowing that, in this tiny blip of time that I have on this earth, I, like everyone reading this, have the capacity to make a difference. We are all loved by the Creator who made us, who cares for us and endured pain and suffering like me and for me. He knows what it’s like to be scarred. He knows what it’s like to be in pain. He knows what it feels like to be rejected and completely alone. Yet he is all powerful and on our side and He wants to enable us to do more than sit in our sorrows as our bodies wage warfare over our illness. Now, more than ever in history of mankind, we are able to make a difference in the world even if our bodies keep us confined to our beds, phones, laptops and IV infusion rooms. We can choose joy, choose to reach out to others in our chronic illness communities and share that joy!
And while Lyme could someday take my life, I can choose joy because the suffering in my body cannot possibly compare to an eternity surrounded by love, without any pain, tears, fear, or sickness. I can choose joy because, even through my suffering, I can make a difference in someone’s life. I can choose joy because this life is worth living even when we are pushed to the brink of death.
Whether you’re in sickness or in good health, whether you’re rich or poor, whether your life is better or worse than it once was…choose to live today.
Written by: Matt Johnson
Matt is one of our People Hope Tribe members living that sunny California dream. Despite his ongoing battle with Lyme Disease, Matt has made waves and touched countless lives through his work as a youth pastor and as an advocate for other Lyme patients. His happy place is on a longboard, eating sushi, playing guitar or drums, but probably not all at once.
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