My Husband's Spinal Cord Injury Does Not Define Him
By Erin Hayes
Caregiver, Wife, Mother
My husband's spinal cord injury does not define him, but I let it define me for a very long time. I am pretty sure it’s tied into the fact that I liked being a martyr… I did. Check out this post about it: Caregivers as martyrs.
Yes, unfortunately it’s true. I held onto my badge as my husband’s caregiver for all the wrong reasons. I wanted people to notice me for all I was giving up! I was screaming: “Notice me! Notice me! I’m so sad! Feel sorry for me! Please!” and it was terrible.
But I needed to do it since it was part of my healing process. Saying it all out loud feels pretty terrible, but it’s the truth. I was selfish and bitter and angry and lonely, and my heart was closed.
But a lot has changed since then and most of it within me. Last week I asked my husband Ben if he thought our life would be a lot different if he hadn’t broken his neck. He looked at me and laughed and said, “Of course,” like I was an idiot. But then he got quiet and said, “I don’t think it would be as great.”
“For real?” I asked.
“For real,” he said.
“Look at me,” he said. “I’m different. So are you. And in a good way. We wouldn’t appreciate things or have the patience or openness that we have if I hadn’t been injured.”
Now, for those who knew my husband before his injury, you would know how shocking that statement is. Ben could once be considered arrogant -- to the point that he wasn’t very likable. I actually thought he was a big jerk when we first met and I did NOT like him. He also wasn’t very loving and open or patient with those close to him. And hugging? OUT. OF. THE. QUESTION. His family didn’t hug. Nope. Not at all.
That is not a bad thing! It’s not. That’s just how his family was and how he was raised. Unfortunately for him, I was raised the opposite. I hug complete strangers. Someone needs a hug? I’m in! And Ben quickly learned he was going to have to like hugging. And no, I don’t mean hugging me since who doesn’t like hugging me? I mean hugging the rest of my family. He totally wasn’t down with that. The first time he met my mom, she hugged him for a while. I thought he was going to throw up.
Then he got injured. And he had to immediately get used to everyone touching him, helping him, helping him eat, dress, pee, helping him with everything.
Everyone was in his personal space all the time. He had to change. He was forced to change and so he did and did it well. I can say, without a doubt, that my husband is one of the most patient men I’ve ever met. (I’m still working on it.)
He is loving and caring and open and appreciative of the life we lead. I’ve learned a lot from him. But the greatest lesson he’s taught me is that his injury doesn’t define him. He won’t let it.
He’s injured. He’s paralyzed. But he lives his life like it is a normal part of him and not one to focus on. It’s a part of him the same way his eyes are blue. It just happened to be a trait he obtained when he was 30.
He lives his life with a grace and humility that I never thought I’d see in him. When he was first injured, I threw myself into spinal cord injury (SCI) research and support groups and fundraising. It was what I needed to do.
He never wanted to be involved and would listen when I’d talk about them but never was interested. He supported the fact that I was but didn’t want to join a support group or learn more about SCIs. He left that to me. He instead just figured out by himself how to work and live. He does both now incredibly well.
I think this is part of why he’s so healthy -- why he’s going to outlive me -- because he’s figured out this whole “life” thing. Living isn’t about focusing on the future or the past, which I do often. Living is about staying in the present -- getting up every day and figuring out that day, that moment, then going to bed and doing it all the next day.
So I’ve slowed down in my hunt for a cure. I haven’t stopped, nor will I ever. But I’m realistic about it now. I no longer hunt online for ridiculous “cures” and no longer spray his scar with healing herbs (Yes, I did do this once. Yes, I am a scientist. Yes, I have a degree in biology. Yes, I was desperate.).
Instead, I will now take time to enjoy what we have -- our daughter, our love, our work, our friends, our families, my black lab, Murphy.
I will also remind myself that because of my husband’s injury, I have changed -- in a good way. My heart is open. My heart is full. I have helped people and continue to help people. All of these things I wouldn’t have without his injury. I will not let his injury define me, but instead let it be a part of our lives -- one we will treasure because of what it has brought us.
Now, please don’t pretend to vomit from that statement since it was really, really hard to write and did feel a bit fake. I mean… a treasure? For real? Well, yes! IT IS!
Look at all that it’s brought us! It has given us a beautiful house, a van that uses hydraulics, a wheelchair that can carry groceries, better parking spots and bigger bathrooms!
It has also brought us closer as a family. It has opened our eyes and hearts to others' needs. It has brought our families closer together. It has brought us patience and humility. It has helped introduce us to friends who have brought so much to our lives.
It has brought us much pain, but so much more joy that I can no longer ignore. Because of his injury, Ben decided to pursue a master's degree in health policy and now has a job now he LOVES. It has also brought me closer to my passion -- helping people. It has made me realize healing isn’t just about medicine and the body, but must include the mind and soul and lots and lots of love.
His injury has caused many tears, but so much more love. I am a better person for it.
ERIN HAYES has been a caregiver for her husband, Ben Hayes, since December 2007, when he sustained a paralyzing spinal cord injury that caused quadriplegia. He underwent rehabilitation at Shepherd Center. Erin is actively involved as a family caregiver advocate and created a website called “We Rock. They Roll.” for family caregivers. Visit it at www.werocktheyroll.com. She lives in Maine with her husband and their daughter.
Shepherd Center provides world-class clinical care, research, and family support for people experiencing the most complex conditions, including spinal cord and brain injuries, multi-trauma, traumatic amputations, stroke, multiple sclerosis, and pain. An elite center recognized as both Spinal Cord Injury and Traumatic Brain Injury Model Systems, Shepherd Center is ranked by U.S. News as one of the nation’s top hospitals for rehabilitation. Shepherd Center treats thousands of patients annually with unmatched expertise and unwavering compassion to help them begin again.