On March 19, 2019, a bomb went off in my life.  Its name was ALS. I had heard of ALS in the past from Facebook ice bucket challenge videos.  But that day the most important person in my life, my dad, Victor Rodriguez was given a death sentence.  He was diagnosed with ALS.  By the afternoon of September 17, 2020, he was gone.

My dad was, and still is my hero. He was a husband, an amazing father, grandfather, friend and the most caring and giving person I have ever known.  At the age of 17 he began his employment at Imperial Paper Box, where he was a dedicated employee for 48 years until retirement in 2011.

In the fall of 2017 is when we notice that something wasn't right with dad’s health. He saw many specialists and had numerous tests done but was not given a diagnosis until March 2019.  By that time the illness had progressed.  To me, he was superman and was going to beat this. That’s why the gravity of his diagnosis did not truly hit me until I was sitting at his bedside holding his hand after he was induced into a coma.  Watching him struggle to breathe, I finally understood that he was going to die. I rejected that reality until the very end.  I did not accept what ALS was or that it had no cure or treatment until he passed away.  I still struggle with the realization that he has passed.  By sharing his story, I hope to help others who are stricken with ALS or who care for someone who is, and perhaps gain some peace for myself.

My dad started visibly suffering from the mystery illness in 2017, although he likely had symptoms much earlier.  The first thing we noticed was that he began struggling to lift his arms up and had trouble holding things.  We assumed it was something simple and with medication or treatment he would recover.

Unfortunately, he started having trouble feeding himself.  Mom would have to cut his food up and feed him.  We then started noticing that he would struggle to walk.  He would unsteadily hunch over and would gasp for air after a few steps.  By the end of 2018, the mystery illness progressed so he couldn’t go up or down the stairs.

March 19, 2019, he went into respiratory distress and collapsed at his apartment.  He was admitted to the intensive care unit at Brookdale University Hospital.  For the first time, I felt truly terrified he was on a ventilator.  Later that day, his neurologist made the gut-wrenching diagnosis.  My dad was suffering from advanced ALS.  At that point, our family had to confront a decision that no family should have to face.  My dad’s respiratory health has fallen.  The only thing that could keep him alive was the ventilator he was connected to.  With that being said, we began round the clock rehabilitation care to keep him comfortable at the rehab/nursing home.  Because of the care he needed we were not able to bring dad home.

Most days, my dad would just lay on his bed with his eyes shut.  But I knew that even though he looked like he was sleeping, he was still listening.  So, I would visit him daily, hug him, and talk to him.  When he did open his eyes, I remember that there was still light in them.  You could feel the love he felt, even if he could not express it verbally.  But he was able to make one thing clear he was very, very tired.  That did not stop us from being there for him. I must say my mom is such a brave woman she was by his side day & night. 

Unfortunately, things took a turn for the worse.  The pandemic started and we were not able to visit dad. The illness had caused dad to be a quadriplegic, and because of that he was not able to use a phone.  We had to depend on a staff member once a week for a facetime call from dad.

On September 12, 2020, I got a call from the doctor that dad was not doing well.  I was able to make arrangements to visit dad on September 13, 2020.  On that day the best thing I did as he neared the end was express to him how I felt, not exactly saying goodbye but telling him everything that I needed him to know before he passed away.  I told him how much I loved him, how thankful I was for everything he had done for me, and perhaps most importantly, that I was going to be ok.  Also, I facetime all my siblings & mom so they can see dad.  Shortly after, my dad fell into a coma.  The last 2 days his life, he was comatose.

On September 17, 202 I was informed by Dad’s doctor that he passed away peacefully.  Through the blinding sadness, I felt a sense of peace. Dad was finally free.

While his illness was inhumanly cruel, the experience showed me excruciating clarity about what love truly is and the importance of family in the face of adversity.  And perhaps most strikingly, it taught me the meaning of quiet courage. Not once during my dad’s illness did he express any self-pity, fear, or anger. He handled his diagnosis and subsequent decline with a matter-of-fact dignity and wry humor that is incredibly inspirational. He passed away not defeated and broken, but with grace and in peace. While there remains no appreciable treatment for ALS, my hope is that, in  my lifetime medical science will find cure. I decided to join The ALS Walk & start a fundraiser in honor of the man I will always call my hero my dad Victor Rodriguez.