Find Happiness

At the age of 28, I was diagnosed with ALS, a terminal neurodegenerative disease. ALS has almost no effective medicines and no cure. It was like watching my future crumble before my eyes. I had given birth to a sweet baby girl just 6 months prior and I was in love with the best guy. 

Fuck, God, Why? My life is just starting. How long will I be alive for? Will Birdie remember me? Shit, HOW will she remember me? Will Paul remarry? Will his new wife be nice to my girl? 

I was spiraling. A million thoughts occurred at once. Frightening, dark thoughts. Any future plans or life goals evaporated. I felt this way for months. It was a despair I couldn’t shake. 

As  my thoughts eventually evolved, so did my perspective. Everyone dies, I reminded myself. So this is just the cycle of life. It’s just happening to me sooner than I expected. Children die for no reason, celebrities die at the pinnacle of success, what makes me any different? I suppose nobody is born with a “happiness” or a “long-life” guarantee. Life is hard. I should know, I was born in Peru, then considered a third world country.  At the age of five, I was woken up by an explosion nearby, so strong that the windows to my room shattered inward. I witnessed terrorism, cholera plagues and extreme poverty. Life IS hard. How dare I be so entitled as to think my life was untouchable. It wasn’t Why God, why me?! Actually, it was; Why not me? Terrible things happen all over the world every single day. Why did I assume I was immune to it?  If it  is my destiny to die young, then I would accept that. If this is my fate, then there’s other ways I could have passed away, right?

I could have gone suddenly. Stepped off 57th Street and got hit by the crosstown bus on my way to work. Gone immediately. Paul would have been devastated as well as my family and friends. Birdie would have been a motherless newborn. They would have to piece together my story to tell my daughter about me. My legacy would have ended then, with others interpreting my life for me. As a closeted control freak, this did not sit well with me. 

I realized that this diagnosis had given me the gift of time. It made it possible for me to say goodbye to those I loved. Be with friends and family. It gave me time to leave my daughter memories of us as a family. To leave behind beautiful pictures and stories her daddy could tell her. If I was meant to die young, this allowed me to do it on my terms. How much time was still a mystery. I would play that by ear. But the uncertainty allowed me to be more present. If today is my last day, I better make it fucking great. If this is the time I have left, it’s in my control what I do with it.

I had a choice to make. I could spend the last few years being sad, hiding out and ashamed about something that wasn’t my fault. Because let’s face it, ALS is embarrassing. Drooling all over yourself or walking funny. Eye gaze users know what I’m talking about, people shouting slowly,  like you're deaf and have somehow forgotten the meaning of words.

Or I could continue LIVING. I had a pretty fabulous life before the diagnosis. I celebrated everything and anything, traveled, had amazing friendships and felt excited about the future. Why should that change? I had to go out with a fucking bang! I always enjoyed life to the fullest, I owed my daughter that legacy. I would show her how I loved life WITH her. Making new traditions together. Having fun on holidays instead of focusing on perfection. Small everyday things like going to the playground on a gorgeous sunny day.  Show her what a beautiful little family we were, how our lives were full of love and laughter. Even after a shitty turn of events. Show her what resilience looks like. Be the mother that I knew I could be. I wasn’t gone yet, I had to remind myself of that every day,especially when the spiraling thoughts came back to visit. Those fears never left me, but I learned to focus more on my goals. Simple things like taking as many family pictures as possible. Documenting milestones together. Allowing her to see me cry and normalizing sadness as an emotion. After all, I have ALS! And most importantly, feeling joy together as a family. Leave her a well rounded idea of life, all the ups and downs. 

I’ve found happiness on this side of the diagnosis by altering my perspective. I went from being a victim of life’s circumstances, to owning my destiny and deciding what I wanted to do with it. I took control again and it was empowering. It felt satisfying to feel that drive again. To have direction and plans. Albeit, short term plans. Yet here I am, ten years later. I don’t know if the shift in perspective saved my mind and therefore helped my body. I would like to believe it did. Or perhaps when you crave life, the universe just gives you more of it. I may never know. What I’m certain of is this. When I realized I was dying, that is when I really learned to live.