I know a couple who is really happy. They both say they couldn’t live without each other. They kid around, and tease each other. They have fights like other couples, but when it comes right down to it, they are very much in love. And they’ve been together for years.
Steve and Helene Nichols’ commitment to their love is inspiring. Steve was diagnosed with ALS 20 years ago. The disease slowly progressed and today, Steve can no longer walk, he can’t talk, can’t eat, can’t move and can’t breathe on his own. Helene takes care of him 24/7/365, without any outside help.
Before you start feeling sorry for them, let me tell you a couple of things. Steve’s brain is all there, and he CAN communicate by using his eyes to focus on letters and words on a computer. The computer speaks the sentences he forms aloud. Last week, Steve interrupted a story Helene was telling me about Steve’s physical limitations, by making his computer say, “At least, I don’t have to eat her cooking any more.” And that was just one of several jokes he told. (Some may be too sassy for me to share!)
Helene says she’d be nothing without Steve, and that he’s the love of her life. She is happy to take care of him, and share her life with him. Even though it is arduous, they go places, and live the fullest life they can. Although his body has deteriorated, Steve’s mind is still sharp as the day the two met. And despite it all, he’s a happy, funny guy.
I’ve known the Nichols’ for about 2 years, and I interviewed them last week for a story on the ALS Ice Bucket Challenge. I wanted to know what someone living with ALS thought about it. Steve and Helene told me that the reason Steve is surviving and thriving is partly because of his wheelchair, his computer, and his ventilator. They are extremely expensive. And if money raised through this philanthropic social media phenomenon helps people with ALS to have those things, it’s all worth it. They did say that they feel some people do it just to do it, but overall, they’re appreciative of the awareness the campaign brought about.
I was happy to be able to tell this story, and I’m even more fulfilled being able to share the story of their unwavering, undying love. People feel like they love people, or things, i.e. I love New York, or I love [insert name here]. You may feel that way, but I have a new appreciation of love after standing in it’s awe-inspiring mountain of a shadow.
Btw, Steve challenged me and photographer Jeff Cridland to the ice bucket challenge. We did it. How do you say no to Steve?