Laughing Out Loud

Living with ALS

My friend and I spent some time today with our mutual friend Gene Connolly who is living with ALS. He received his diagnosis a little more than 3 years ago. His wife and family wept. His colleagues were devastated. His friends horrified to think that this strong, vibrant, passionate man would be held prisoner in his body while his mind remains completely alert, intact, curious, finding irreverence when least expected, loving a good joke, loving his family and friends. An impossible existence. Yet Gene committed to living through the path of this mean and insidious disease with a spirit of love and joy that honestly confounds and at the same time reassures those of us who love him and fear for our own mortality.

This rotten disease has steadily taken from him his ability to run, walk, stand, eat, hug, button his shirt, put on his socks, speak. It has robbed him of tasting family barbeques, birthday cakes, Thanksgiving turkey, ice cream, Guinness. It has stolen from him the spontaneity of the give and take that we rely on to convey our ideas, humor, quick wit, the response to a funny situation in real time. How frustrating that a question is asked and answered before his laser can locate the letters on the communication board on the wall across from his electric chair.

This miserable disease has one by one hijacked all that it could. And yet our friend has tricked this disease. He's thrown nails onto the track in front of the barreling freight train that is ALS. He's held on to the dearest, most precious parts of his being.

Our friend has denied ALS access to that place of life, love, joy, humor, story telling, empathy, passion, and the desire communicate to all of us. It isn't easy. This is really, really hard; communication and response to the moment is a huge challenge for him, completely exhausting, but not impossible.

What I want you to know is that our friend Gene, who has been stripped of all that we may consider essential to live, is fully living in his own way. His laughs are silent but evident in his eyes, his jokes are slowly spelled out but hysterical, his wry sense of self and of his condition are ever present.

I will never know how some of us can navigate personal devastation with such joy and acceptance but I do know that our friend, with the support of his incredible wife and family and caregivers has chosen to do so. I want you to know that watching Gene I have come to understand that anything is possible. With belief in life, love, hope and above all humor.

His silent laughter fills the room.