When you are in a long-term relationship there are numerous stages or milestones you will reach together. Many of them are expected – some we anticipate with excitement, others with dread. Then there are obstacles we come up against that are not part of the plan. These issues were on the list of things that could happen but maybe (hopefully) they wouldn’t happen to us: infertility, infidelity, physical trauma, and disease. The journey that Ian and I have been on since my spinal cord injury has been one that even my anxious imagination could not have invented. We have been tested and our eyes have been opened to an entire world that we didn’t really know existed: the world of disability in romantic relationships.
Ian would tell you the first thing he noticed about me (back in 2002) was my smile. I was instantly drawn to his kind eyes. Initial attraction is the easy part, right? But even after fifteen years, three kids and one spinal cord injury, attraction is not an issue. At fifteen years old there is still so much growing up to do; so many people worry about getting together too young. But when you find someone who fits so perfectly in your life, someone who knows all of your stories and yet still finds you interesting, someone who loves you at your very worst and awaits your readiness to help you get to your very best, well that’s someone you decide to grow old with.
Ian is quiet and a bit mysterious and I would challenge anyone who says they know him well; I’m not sure anyone really does, besides me. He encourages me to accept myself for who I am, to have patience for my own inadequacies, and to give myself credit for the strengths that I struggle to see I possess. Since my accident, there hasn’t been one second where he has given me reason to believe that he has lost interest in me or our marriage. Any anxieties that I had about him leaving were mostly because of high statistics I read about divorce after SCI and my own imagination getting the better of me. I talked about our relationship in a previous post called Just You, Me And My Wheelchair but I wanted to talk more about the public perception of our marriage and other relationships where a spinal cord injury is involved.
Recently I had my first experience where I felt as though someone pre-emptively judged our relationship based on my wheelchair. We were at the gym (where we had been numerous times before) and out of nowhere, a manager came over and introduced himself. He began congratulating us on our training and asking questions about what we have been doing and how long, etc. To be honest, I was already having an emotional day and I didn’t understand why he had come over to talk to us in the first place. It felt like he was digging for something so I told him he was catching me on a bad day and attempted to end the conversation. I must have somehow alluded to the fact that Ian is my husband because all of a sudden the manager looked a bit stunned and uncomfortable. He stammered out a few words similar to “oh, oh ok, oh, so you two are married”. It was kind of a statement, kind of a question and definitely awkward. As we fumbled through the rest of the conversation we discovered that he was concerned Ian was my trainer and you cannot bring your own trainer to the gym.
I imagine this man sees couples in the gym all of the time. I also imagine he doesn’t corner them all and question the nature of their relationship. In that moment, I felt stripped of some arbitrary right I had to be considered ‘enough’: woman enough, human enough, and able enough to be someone’s wife. I was so close to tears by the time he walked away that we left to go home after accomplishing nothing. I barely made it to the car before I started sobbing.
The drive home was silent. Once we were home my son informed me that he thought I had pink eye. “No, really Daddy! Look at her eyes.” His concern was endearing and brought momentary relief from the reality of our afternoon. Then Ian did something that I never would have expected, he called the gym and asked to speak to the manager. He explained to him that we were hurt by his assumptions and wanted an explanation as to why we were singled out. The manager was incredibly apologetic, which we both appreciated, but the experience has officially skewed the optimistic view I once had about the way people see our marriage.
It’s a bit of a cruel truth that you can have a thousand people build you up to have just one bring you down. Until this encounter, we hadn’t dealt too much with any obvious judgement towards our marriage. We get a lot of comments surrounding my husband’s superhero-like loyalty because it is evidently baffling to some people that a marriage could continue to thrive after such a major event. There are many people who have told me that they don’t believe their marriage would last through a trauma like mine. All of this apparently leads to the conclusion that my husband is a saint. Now, I love Ian and I agree that he is an amazing man, but not because he is still married to me. I don’t believe that he stays because it’s considered the right thing to do. I actually like to believe I bring some qualities to the table that benefit his life and our marriage.
He says that with everything that has happened, I am not selfish in my grief. That I believe this injury has happened to both of us and on the days that he struggles I am there to encourage him, give him space and pick up the slack wherever I can. On days where we both struggle, we do our best, together, to make it through the day. He will tell you that I’m funny and can make him smile without effort. I am his best friend and he can talk to me in a way that he can’t talk to anyone else. He says that I can read our children better than anyone and that when he might lose his patience, I am able to see more of the situation and understand what might really be upsetting them. He thinks I’m beautiful.
I won’t sit here and tell you that our marriage is exactly the same now as it was before my accident. A lot of it is, but to say there hasn’t been change and loss would be lying. Ian went from having a fully independent wife to having a wife who, for a time, needed help even to sit up. As the months have gone on, his involvement in my care has become less and less. At this point, it is mostly with certain transfers and some clothing choices that I can’t get on myself (which I realize I could stop wearing but I don’t want to). One of his biggest struggles is knowing when to help and when to step back and let me do it on my own. A lot of the times he helps me in order to save time; we have three children and are almost always running late for something. But we are gradually feeling that the roles in our relationship are less upside-down and more just a bit sideways. While we have adjusted a lot of aspects to our life, we have never quit on each other and we have never felt like we were losing our marriage. Until this little conversation at the gym, it hadn’t really occurred to me that other people may not understand that.
There are countless couples in the world where at least one partner has a disability. This was reassuring for me as I started to recover but I find it sad that so many able-bodied people would find these relationships difficult to understand. The stereotypes that surround disability certainly play into the misconceptions. This scene from The Office sums up what I’m talking about quite well.
Michael Scott never fails to disappoint. Billy is the man in the wheelchair and his girlfriend has just walked away from the table. This is the conversation that follows:
Michael: Billy, your nurse is hot.
Billy: That’s my girlfriend.
Michael: Your nurse became your girlfriend? Sweet.
Billy: She was never my nurse. I met her at Chili’s. She was my waitress.
Michael: Chili’s is great.
It’s awkward to watch (like all things Michael Scott are) but the premise behind the scene is incredibly accurate when it comes to the general perception of disabilities within romantic relationships. Still, I figured getting all of my information from a 10-second TV show clip was not necessarily the way I wanted to make my point (Season 2 Episode 22 for those who want to see it). I wanted to know more. I contacted a few people I know to get their perspectives.
Leanne Lavender is a woman I have connected with online whose husband Derek suffered a spinal cord injury just a few months after I did in July 2016. She has a great blog that documents their life and one thing she wrote really resonated with me and what I’m trying to say.
“You can either choose to get to know your spouse through the change or refuse to adjust your thinking. You chose them initially for a reason, so choose them every day by embracing who they are becoming”
I completely agree with her statement above. When you choose your partner, you are deciding to grow with them and change with them and love them through the life that you are venturing through together. Leanne and Derek have clearly made a choice to tackle their unexpected storyline with tenacity, grace and love.
She has said that their experience with public perception has been similar to ours. She finds that most people are very kind and helpful. She has also received comments of her being a true saint for staying with Derek but dismisses them because the thought that her husband is not worth staying with, because of a spinal cord injury, makes no sense. He is still the man that she chose. When I asked her to name one thing she loves about him she had this to say.
“I love his work ethic. He never complains about the early hours or late nights. He’s always the first to volunteer to help and always refuses to ask for anything in return.”
Leanne and Derek’s story is similar to our story in that they were already married at the time of Derek’s injury. I began to wonder about couples who meet after an injury has occurred. I talked to two local women who both met and married their respective husbands several years after their spinal cord injuries.
Yasaman Best was injured in 2002 and her injury is at the C6/7 level which she explains as having impairment from the chest down. She met her husband Rob online in 2006 and
they were married in 2010. They now have a two-year-old son. Rob says all he saw on their first date was a woman who was interested in travel, going back to school and getting a job. He loves her strength and the fact that she doesn’t let her disability get in her way.
Yasaman has had different experiences with public perception than I have. She says that many people refer to her as Rob’s friend even after he has used the word ‘girlfriend’ or ‘wife’. Some even just assume he is her caretaker. They have come up against questions surrounding her disability and why it is he would want to be with her and not with a ‘normal’ girl. It makes you realize that there is a lot that people don’t understand.
Jocelyn Maffin lost function below the T10 level (bellybutton down) at 19 years old. She was 32 when she met her husband Tod and they were married two years later. She didn’t
date much before meeting Tod as she found that dating was difficult because a lot of men struggled to get past the disability. She assumed that men thought she was un-datable and felt as though they saw her as an “asexual object of pity”. She says she was unable to see when someone was really interested in her as she assumed all men felt that she wasn’t desirable. Tod says her inability to know when someone is flirting with her is what delayed the beginning of their relationship (I had to laugh when he claimed that was her true disability and it should have a tax credit). He feels as though their marriage is truly no different than anyone else’s. He loves everything about her including her dimple and the fact that she is a science nerd (she has the periodic table memorized).
Jocelyn has found that there are lots of sideways glances in her and Tod’s direction when they are out together. She says he has been asked if she was ‘worth it’ on a couple of occasions but they don’t let those comments bother them. Jocelyn seems to struggle more with the misconceptions in the world of women with disabilities and how that could play into a romantic relationship. You should check out their podcasts Gimphacks
I think what I enjoyed most about these few stories was hearing the qualities that their spouses love about them. All of the reasons that were given could be just as easily said about someone who doesn’t have a disability. Because a spinal cord injury and a wheelchair does not inhibit one’s ability to love, provide comfort and be a partner in life. It just means we’re sitting down when we do it.
However it seems as though there are two ways that these romantic relationships get looked at: those who were together before an injury, and those who found each other after. When you stay together through an injury you get a gold medal for your effort. People understand the relationship because this happened to you and you were already together so it makes sense you would try and make it work. You also go through an emotional upheaval together and through a phase of healing and learning how to work around new limitations and struggles. You have to work to get back your independence and in the meantime you need things from one another that you never needed before. It’s a battle but it’s totally worth it when you are with the person you want to be with.
When you start a romantic relationship after an injury it seems that the perception changes. Questions arise surrounding the motivation for the relationship, as it is difficult for some people to understand what could be attractive about someone with a spinal cord injury. But you have to remember that when people meet some time after an injury, a lot of the healing has taken place. The person in the chair has found their independence and is already living their life without a significant other. They are looking for a partner to share their life with just like anyone else.
My goal in this post is to show that meaningful, loving and important relationships can occur between so many different types of people. I felt judged in my marriage the other day and it hurt me more than so many other things have before. My relationship with Ian and the life that we have built together is my biggest accomplishment and I am fiercely protective of it. And while it truly doesn’t matter what other people think, it still hurt me to feel that from someone else’s point of view I didn’t appear to be enough. Thankfully my husband makes me feel otherwise. I am woman enough, human enough and able enough. Our marriage is more than good enough.