Thursday, July 11, 2013

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

12 comments:

DebbieFoster said...

You two are amazing, caring, humble, real people who are following your hearts and following God. Keep up the good work!

Cheri said...

Very well said Mike. We are all going to face people who don't agree or are down right mean, it's just part of life. We have to dust them off and go on because not everyone is going to love us all the time. Even as Christians we are facing adversity every day. It's hard but God will show us the wisdom to handle and deal with every person and situation. I have a feeling the man who posted probably had issues that we don't know anything about. Great post and much love, Cheri

Steph N said...

You two always amaze and humble me. I am a past "sorta" coworkers of Dana's. I worked for a fellow Hearst station and didn't know her well. I found her blog through facebook and I've read it steadily over the years. Dana- you are one of the most incredible people I've ever "known." You guys are a shining example of what a marriage truly is- a labor of love.

Kisha Hughes said...

Beautiful! I have followed your blog for about the last 10 months and wish I would have found it sooner. My dad is 2 years post injury and my mother, wife of 30 years, is his sole caregiver. They live penny to penny and still do not qualify for assistance. There is no choice than to keep doing what we do. IT IS HARD! Thankfully some days are better than others. My mother also hold a full time job third shift as a physical laborer in a factory. My brother and I help her as much as we can, I find it is difficult for me to contribute like I want as I live 3 hours away. It is not the distance that pains me, I would, and often do, drive 3 hours in a heartbeat, more so it is when my mom struggles with the strength to be a wife, mother, grandmother, and caregiver and I can not physically be there to lift and encourage her. It is because you and Dana choose to live in a fish bowl that we have found we are not the only ones. We appreciate your raw feelings, vulnerability, openness, love for each other, and willingness to share the hardest of hard times with the entire world. Thank you, thank you!

Belinda Wilkinson said...

My husband and I recently celebrated our 1 year anniversary of his injury. I don't know how I found your blog but I do know it was one that I read and it gave me light when I didn't know where I was going. Our situations are different - he is a T3 and we were married for 8 years and have 2 kids - but the emotions and struggles are the same. Because of your blog and the others that you have made easy to find- I feel like I have a community who understands my passion for my husband and grief at the situation. Thank you and Dana both for writing.

cripp said...

Point well said. I'm a C-4 quadriplegic who is pretty much been bedbound for one long time and have been with my wife for 20 years also. It's not always a good day, but sometimes it's always a good day. My wife stumbled across this site and showed me a few posts and it is looking like looking into a mirror

Mike Ritter said...

Thanks for posting. Glad you found us. Hope you heal up. Be sure to hop in our Facebook page.

Mike Ritter said...

Thanks Belinda. One year! You guys have so much ahead of you.

Mike Ritter said...

I hate to hear their struggle. We've been on our own before and it's tough. Care is really expensive. Most states have a Mesicaid waiver program that pays for in home care for people who qualify for nursing home care. We'd be lost without it. Definitely worth doing the work to apply.

Mike Ritter said...

Tanks Steph. She's something special indeed.

Mike Ritter said...

He actually removed the comment. But it gave me an opportunity to brag on my wife. Never a bad thing.

Mike Ritter said...

Thanks so much Debbie.