I Chose to Live With ALS. So Should You

It is now been more than five years since G‑d gifted me with ALS, otherwise known as Lou Gehrig’s disease. But this week contains an added milestone that justifies celebration for me: It’s been three years since I had a tracheostomy. For those unfamiliar with the terminology, a tracheostomy is an operative procedure that creates a surgical airway, allowing me to breathe.

It was the day after Rosh Hashanah of 2014. I had been using a machine called a BiPAP to help me breathe, yet still I seemed to be fading. My wife, Dina, took me to the hospital, where I was diagnosed with pneumonia, and my oxygen level was dangerously low.

At this point, I was given the choice to have the tracheostomy, effectively saving my life, or choose against it, putting an end to the suffering and difficulties. Legally and halachically (according to Jewish law), it was my choice, and with Dina’s unwavering support, I chose to live.

The simple fact is that if I would not have had the operation, I wouldn’t be here today.

Another fact is that the true sacrifice in this story is my wife’s. She is the one who has taken the brunt of the hardships, caring for me and the family with love and tears. She has to juggle being mother, father, wife, caretaker, sometimes nurse and a multitude of other titles. I can’t begin to imagine how much she suffers, not having a normal husband to do what husbands do for their wives.

All I am able to do is listen and write to her, yet she has given me life and the ability to watch my children grow up. With her support and womanly ingenuity and thoughtfulness, she pushes me to be a better father, to study more and more Torah, and, in addition, to write. I owe it all to her.

Being able to see my children grow is one of the greatest pleasures. It is incredible that with all the hardships, my children find a way to function as normal and healthy kids should. And I get to see them, talk to them, and experience their personalities and individual talents.

Over the past five years, my family and I were blessed to see amazing kindness from all over the world, especially from the Los Angeles community. But there is no one I can thank more than the five exceptional people who have accepted upon themselves the responsibility of taking care of me and my family. Our family calls them “The Fantastic Five.” They started the Hurwitz Family Fund, and in more than five years haven’t wavered a bit. They are truly amazing!

After having the tracheostomy, I lost the use of my right hand, and with that went my ability to communicate. Before that point, I would type on an iPhone for communication and writing blog posts. For the nine days I spent in the hospital, I could not communicate at all. I just let go and put my trust in G‑d, and my wife made sure I was taken care of.

I was in recovery in the ICU when I began to appreciate the importance of bikur cholim, the Jewish mitzvah of visiting the sick. Even though I wasn’t able to communicate, I felt uplifted with every visit, whether it was from a rabbi or lay person, man or woman.

While in the ICU, I was hoping my children would visit. Yet I knew they were not allowed to because of age restrictions. To my great surprise and pleasure, they managed to sneak in and visit me. I cannot begin to tell you how much I enjoyed seeing them!

As Yom Kippur was approaching, my wife and I wondered what kind of holiday we would have in the hospital. The thought sounded grim, but we were in for another surprise.

Just before Yom Kippur, a woman was ushered into the room directly adjacent to mine. Her children were with her and, when it came time for prayers, they came to my room. With the most melodic voices, they sang the services. It was truly uplifting.

During Yom Kippur, we had several visitors who walked to the hospital to see us. All and all, it turned out to be one of the most memorable holidays for me.

I am blessed to live at a time when state-of-the-art technologies exist to keep me alive, such as the ventilator that breathes for me. Also, I am appreciative of the incredible computer that reads my eye movements so I can type and communicate with others.

While life is full of difficulties, pain and suffering, there is so much to be grateful for. While I understand the hardships, I choose to focus on the positive parts of my life. That keeps me going. There is my wife, my children, family, friends and you, my dear reader. I have the opportunity to learn and teach Torah. I have the opportunity to inspire. There is the hope that in the future, a cure for ALS will be found—or perhaps a miracle will transpire even sooner.

Each of us has so much good in our lives. Even within the suffering and difficulties, there is so much good to be found. Focus on the positive in your life now. See all the love around you. There is so much you can do, and so much more you can give.

May you have a good and sweet year, and may Moshiach come and put an end to all the suffering! The time has come.