My Ripple into the Future

At 30 years old I had cultivated a humble life. It was just quaint enough that my outlook was set on the distant future with the general expectation of happiness. I was living an untested, complacent life.

That all changed with an eye twitch. When I let my dog out in the morning I couldn't pronounce the word potty. I was building a fence and the hammer didn't feel right in my hand. As mysterious symptoms crept into my body I became frantic. The Internet told me it was ALS, but it took nine months to get the diagnosis. In the meantime terror coiled around me and wrung out all hope for the future that was just there before me. The life I built would finally be tested. As the tide went out, friends and family got behind me and did everything they could to brace me for what was coming. An outpouring of support lifted me up so that everyone could see what happened next. Everything turned into wreckage. Fate had cleared everything with impunity, except something small and bright. Brought to me in a wave of chaos, exactly what I needed. Remi, my ripple.

I think most people with ALS, or those who've been touched by it, live a similar nightmare. It can start out so small and quiet. In my case the beginning was nothing more than a heightened awareness to odd little things like bumping a shoulder while walking around around a corner. The fear didn't set in until symptoms cropped up that I could Google. A search engine doesn't care about your feelings, or sugarcoat the results to 'eye-twitch slurring with cramping'. At that point I had a secret that I was alone with.

You can't expect to be taken seriously when you say the Internet told you the sporadic symptoms you are having are the result of possibly the worst disease imaginable. Actually, at that time I was so afraid that I didn't want to tell my friends or family. So I mostly kept it inside, and experienced the next pillar of my diagnosis: Denial.

I truly wanted it to be a stroke, Lyme disease, or some kind of benign tumor pressing against my body's control system. The laziest explanation was that it was 'all in my head'. That's what I heard the most on my way to a neurologist nine months later. Nine months of randomly shutting my office door, or slumping against a wall to cry about a future that only I knew was vanishing. What I needed was a loving hand on my back. What I got was stapled together papers from the internet about the physical manifestations of bi-polar disorder.

In April of 2018, I limped into a small EMG room. After a few minutes I had my answer. Maybe the picture of Lou Gerrig on the wall was benevolent, but to me it was a reminder that I had a disease with no meaningful treatment or cure in over a hundred years.

At least I could officially name my fear. There was actually relief because I wasn't alone anymore. Friends and family surrounded me like white blood cells. I got drunk on empathy. Soon there were T-shirts with my face on them, a gofundme, and plans to build a fully accessible house. Most importantly though, there was an influx of love filling the void created throughout the diagnosis process. We decided to throw a hail mary and it worked; there was a baby on the way. Diamonds are made under pressure. I was full of hope.

Not long before then, I was meandering towards a vague future. Suddenly I was rocketing Into a new horizon shaped by all the makings of a beautiful story. I had my enemy, my journey, self doubt, struggles, allies and finally my reward. What would the journey home be like? What would I name my daughter, who would she grow up to be, and how would she carry on my legacy?

Remi Jean Marlow was born on February 10th 2019. She cast a sense of peace and joy over our family. The nightmare I was living seemed far behind me. I felt that no matter what happened from then on, I could be quietly content with my life. There was still fear, but Remi mitigated it the furthest corner of my mind. Everyone told me 'they grow up fast', but in a strange way that's what I wanted. Time flying by meant that I would be alive making memories with my daughter.

Remi put wind in our sails, and things started moving fast. My Dad, Step Dad, Brother, Uncle, and a couple generous contractors had a concrete slab and walls stood up by the 4th of July. There was still so much work to be done, but help kept coming. The local news came to cover our story, and in spite of my diagnosis it was impossible to feel anything but gratitude. By Christmas we moved in to a fully accessible smart-home.

The huge support system dwindled naturally as we had reached our goal. I got to form core memories of my daughter stomping around with her little diaper butt. I was able to shower in my own home for the first time in months. Our village built us a strong, beautiful house. But inside things became strained. Bickering turned into shouting. Eventually the negativity radiated through my family, something I will regret for the rest of my life. A chasm opened up between us that wasn't ever going to heal, so we got divorced. My brain went into reptile mode and I blamed my pain on family members. I turned into a different person, the way an animal changes in a cage.

Buried under the weight of my situation, I had one thing to focus on like an ember I could see from far away. An echo reaching me no matter how lost I was. Remi Jean. I wouldn't have believed it then, but I would get to a better place little by little. That's a happier story in a new environment where Remi takes center stage.

ALS doesn't just take away the things you have. It takes away what could be. Up until 30 I was just going through the motions. I was ready to be more intentional, disciplined, and to be the world's best dad. Instead I live in a bed dreaming of what that would look like. But I know that in a hundred years I won't be here, nor will anybody who knows my story. My sadness and regrets will be forgotten, and all that will matter is one good thing I made: a ripple.

Ob-la-di, Ob-la-da. Life goes on.