Our Semi-Normal Marriage in a Fish Bowl

Recently we received a pseudonymous comment in response to Dana's candid admission, I wonder if I can do this forever. The reader identified himself as a C5 quadriplegic. This is a level just higher than mine with generally a  little less functional ability. He was rather curt and unfairly characterized Dana's post as narcissistic and derided her for not accepting help, using a mechanical lift, and not using a hospital bed. He further went on to chide her emotionally.

I want to respond.

From the start Dana and I have not defined our lives by my disability. In fact, for almost twenty years I have lived a fairly normal life despite it. From high school, my focus was never my disability or overcoming it, but being part of my community. Sure it was always tough. I simply can't do certain things or require help. If I can't afford some adaptive device I get by. My interests never revolved around my disability.

Dana and I fell in love over many years of correspondence. As we grew up we realized how many interests we share. Furthermore we admire each other. Beyond physical chemistry, we admire each other's character. It wasn't pity that brought us together. Far from it.

So, a few months into our marriage our mutual determination met crashing headlong into the wall of disability. We both faced all of the real limitations together. For the first time I saw how my disability immediately affected someone I loved with all of my soul. Dana was crushed and went spiraling into despair. She sought help and reached a gracious and wonderful professional who walked us through those difficult days of grief.

We began to recover. Our lives remained fairly normal, but my disability still raised its head in the most obtrusive moments: on a date, during Dana's big interview, at church, over holidays. We were always at its mercy. We were helpless. We just wanted normal.

Then Dana shared an open and honest post about her struggles on her blog ("The Painful (Naked) Truth"). For years it had been stories about her career, friends, and Brokaw (her puggle). It was the genuine and raw posts that resonated with others. All of a sudden spouses and other caregivers and many others from around the country responded with gratitude for her willingness to write what they had felt and encouragement to go on.

Without intention her vulnerability had sparked a fire greater than either of us imagined. We honestly considered whether to really share our pain, but as we drew back the curtain, readers responded with heartfelt appreciation and continued encouragement. Dana learned how to actually reach people through social media. People continued tuning in to our story.

A network of caregiver spouses sprung up among our readers. Dana made remarkable friendships with couples around the world. As she traveled for work, readers wanted to meet with her. We met a family at Walter Reed who touched our souls and reminded us of the plight for wounded warriors. She wrote a little book. We got a casting call to share our story on a TV show.

All we wanted was a normal, or semi-normal, marriage. Within a few months we were at our wits' end. Family, friends, a professional therapist, church weren't our answer. The missing piece was this blog and this community. This is our calling. This is our ministry. We live in a fish bowl because sharing our battles helps others -- who believe they are alone, that they are horrible because they hate this life with disabilities sometimes, that they just can't hold on to their marriage -- find a moment of hope.

So, MrSCItruth, my wife is far from some narcissistic person obsessed on her benevolence. She is a brave and caring woman who faces every day the limits of her human strength and selfish desires, laying them down for her helpless husband whom she loves. She does all of this in the open so other caregivers can hear a sympathetic voice and guys like you and I can understand their plight.

Greater love has no one than this: to lay down one’s life for one’s friends. (John 15:3, Holy Bible, New International Version)