By Stephen Kauffman
Living with ALS since 2012
This is the first in a series of posts from people living with ALS who are featured in our #VoiceYourLove campaign.
Before I was diagnosed with ALS, I didn’t know much about it – just that it was a debilitating disease. I was 27 years old and had no idea what to expect. I certainly didn’t plan for how much love it would bring into my life.
My parents and my sister were just incredible. They helped me maintain my independence and encouraged me to keep working and living my life, while navigating through the challenges of the disease.
My dad also joined the volunteer leadership for The ALS Association, to help raise awareness and support for others in the ALS community. Their love and belief in my abilities was so important to my sense of self and autonomy as a young man.
Then, I met Jeni in 2014 through an online community that we were both a part of. Our interactions started small through email conversations, text messages, and phone calls. We discovered we shared many common interests. Our communications with each other became almost daily and I found myself having strong romantic feelings for her.
She really wanted to meet face-to-face. So I agreed to do a video call first, since I was still self-conscious about what she might think. She got frustrated after a while of communicating because I still didn’t want to meet in person, so I told her that I had a neurological disease.
Jeni works as an occupational therapist and so had a general understanding of my possible limitations but she still wanted to meet.
Our first date was magical, and we talked for three hours straight. Jeni was going to be away on an extended trip to Japan to visit her parents. So we decided we should go out one more time before she left.
My dad took me to meet Jeni at the movies, where I introduced them. As we were walking to the theater she instinctively helped me walk to our seats by holding onto me. She even helped me off the chair after the movie without hesitation. It just felt so natural.
After the show, Jeni drove me home and I worked up the courage to kiss her for the first time. While she was away, we kept in touch daily by text, email, video call, and made arrangements to hang out the day after she got back.
One night a few months later, while we were just hanging out at my apartment, I told Jeni, “I’m falling.” She thought I meant the chair I was sitting on. I smiled and then said, “Yes, that too!”
Jeni and I were married in the summer of 2015. Like other newlyweds, we enjoyed creating our first home together and just spending time with each other. My ability to walk was declining so we tried to travel as much as we could.
Then, we decided that we wanted to start a family, and we welcomed our first child, Elijah, in the summer of 2018.
While ALS takes away so much, my family has shown me that love knows no bounds. I have learned to treasure the time that I have the ability to do certain things. I know to appreciate what I have now, before it is gone, and to focus on what is still possible.
I am very thankful for all I am able to do, for I know that, at some point, I won’t be.
So while I still can, I will say the things that matter to the people that I love in my own voice. Today, I will let my funny Valentine, Jeni, know how grateful I am to have her as my best friend and amazing wife.
I will wish my dad a very Happy Birthday, and say Thank You to my mom and sister and extended family for all of their support.
I love my son more than anything in the world and I will voice my love for him until I am physically unable to.
I encourage all of you – don’t wait – let the people that matter know how much you love them every day. Voice Your Love!
As part of a new nationwide campaign, The ALS Association challenges you to “Voice Your Love” and help us raise awareness about ALS and one of its most devastating impacts: the loss of a person’s ability to speak. Learn more at voiceyourlove.org.