My Life With a Spinal Cord Injury. Part 3.
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Claudia Miler is a quadriplegic, meaning she cannot move and feel her body from the shoulders down. In our three-part interview series she allows us to peer behind the curtain – into a truly impressive life.
Sexuality, Relationships, and the Desire to Climb Stairs
Claudia, in part one and part two of our interview series you told us about your accident and your life as a mother of two. Now you are a therapist. What exactly does your job entail?
I’ve always wanted to work with people. After Madeleine was born, I started training to become a life and social counsellor, systemic coach, and couple and sex counsellor. This allowed me to get to know and understand myself better. I have now been an activation therapist in a rehab centre for five years, in close contact with other wheelchair users. My job is all about leading by example and demonstrating things. Even if you have excellent physiotherapists and occupational therapists, everything is always different with a spinal cord injury.
You meet spinal cord injury patients every day. What concerns them most?
Every patient is different. Age and gender play an important role, but much revolves around an idealised role model. Women worry that they can no longer manage their respective households. Men, who are often the higher earners, don’t know how to support their families after suffering a spinal cord injury. Social body images also play a role: the attractive, sensual woman and the tall, strong man. These role models suddenly no longer apply. Our primary goal is to give patients back what they had, even if it’s different.
What role does sexuality play?
It requires courage. Naturally, many questions arise. Men usually worry whether they will ever get an erection again. That’s something one should talk about – even with the respective partners. Their worries are often brushed aside. They don’t know what to do or what they’re allowed to do. Everything changes when your partner no longer feels sensations. It’s all about trust, appreciation, and physical intimacy. I always illustrate issues in examples, but patients are still shocked by the fact that I am a single mother with a spinal cord injury.
Have you developed a certain callousness in terms of spinal cord injuries?
It’s natural to become a bit jaded. However, when I encounter children in this situation, it always hits me extremely hard. The same applies when very old people are affected. It pains me to see how they have to rebuild their lives from scratch. Sometimes I think that there are certain things in life one just can’t avoid…
It sounds so negative, but yeah – let’s call it that.
Are you in a relationship right now?
Yes, for more than three years. It looks like my boyfriend doesn’t enjoy simple and boring circumstances. (laughs) We met at work when he was training as a nurse.
Does his professional background help?
Of course, it relieves a little initial pressure because he knows what a catheter is. But I don’t want to – and won’t – mix certain things. Apart from emergencies, I ensure that he has nothing to do with sanitary issues. The man who I sleep with shouldn’t be the man who helps me go to the toilet. I firmly believe that turning your partner into a nurse affects a couple. I don’t want a relationship based on loyalty or obligation. I want someone to be with me for my sake, not because they think I can’t manage alone. We have a perfectly normal relationship, just like everyone else. My partner rolls his eyes when I ask him to empty the dishwasher, just like everyone else.
Would you like to tell all this to your 16-year-old equivalent?
I wouldn’t have believed my own words at the time, you know? Just as those affected often don’t believe me when I tell them that they have perspectives. I am convinced that your life remains negative when you give yourself up. You need to start fighting for it. You can take a positive path, if you want. Everyone has the opportunity to lead a good life.
Is there something you still crave?
I’d be lying if I said I wouldn’t like to just slip on a beautiful dress without having to muddle myself into it. And travelling is so tedious in a wheelchair. Yes, I’d like to check in to a cheap hotel room that isn’t wheelchair accessible. I’d like to climb around Austria’s castles and ruins. I’d like to just lie in a bathtub for hours. And I’d like a maisonette apartment with a staircase I can climb.
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