© Markus Frühmann

My Life With a Spinal Cord Injury


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Claudia is a quadriplegic, meaning she cannot move and feel her body from the shoulders down. In our interview she allows us to peer behind the curtain – into a truly impressive life

 

Accident, Wheelchair, Infinite Sadness

 

Claudia, you are confined to a wheelchair. What happened?
I was 16, studying at a polytechnic institute with a focus on photography. In November 1998, I decided to spend the afternoon with friends in a nearby shopping centre. I still remember the red donut stand there, and its lingering scent of warm sugar. It was already dark when we drove home. I was sitting in the back seat, not wearing a seat belt. The car suddenly shot off the road, overturned, and I was catapulted through the rear window. The other two passengers remained unharmed. I tried to stand up, to move my arms and hands, but it was not possible. I could hardly breathe. When the paramedics arrived, I immediately asked whether I had suffered a spinal cord injury. The emergency doctor refused to answer at the time. Then I was given medication.

What’s the next thing you remember?
I remember coming to in the trauma room of a hospital. Someone was removing my piercings. My long black hair had been shaved off because of the lacerations on my head. That felt like a disaster at the time. I had no clue what else was coming… I was diagnosed with a skull base fracture and rib fractures. My spinal cord was cut off by a haematoma at the level of the 6th/7thcervical vertebra. I have been paralysed from that level downwards ever since.

How did you experience your time in the ICU?
In the beginning I was exhausted, under strong medication, and slept a lot. When I started feeling a little better, I underwent respiratory training every single day. I remember thinking at the time: “I’m 16 and I haven’t even had a boyfriend yet. No man will ever show an interest in me when I’m in a wheelchair.” However, it didn’t take me long to realise that there was nothing I could do to change what had happened. That approach helped me come to terms with the situation.

Did you have support?
Yes. My mum was at my side for the entire three weeks I spent in the ICU. I was grateful, of course, but it was almost too much for me back then. Looking back, it probably would have made sense to talk to each other more about everything.

The next step was rehabilitation, right?
Yes, exactly. I was transferred to a rehab facility after spending two months in hospital. It soon became apparent that I had retained a few bodily functions on the left, but also that the right half of my body was far worse off. I was extremely pubertal and thus a real handful for the caregivers. They told me that my skin was red from sitting so long and that I needed to go to bed at 7pm to relieve it. I was told to adhere to catheter times, show discipline, and monitor my body. I was supposed to document my fluid intake to know how much I would pee. I just thought: “What do you all want from me?”

Did you manage to “settle in” somehow?
There were many other young people who had suffered spinal cord injuries. We became friends, supported and motivated each other. On the weekends, we’d challenge each other by counting how many laps we could manage in our wheelchairs. And after seven months, I returned home.

How was the transition from a protected environment into everyday life?
I was exhausted and didn’t really know what to do with myself. I couldn’t move or feel my hands and fingers after the accident. At that time the world was still analogue. I couldn’t even adjust camera films alone, let alone access the dark room in my wheelchair. My dream of becoming a photographer was shattered.
I bounced from one school to the next. While my friends were pursuing careers and shouldering responsibilities, I plunged into a deep hole. I hid in my room during the day and hit the streets at night. I partied hard and drank too much. When I was 19, my mum moved out because we simply couldn’t live under the same roof anymore…

That sounds lonely.
Yes, I was very lonely. I almost failed to find a way out of this rut. I was so dissatisfied, chose sub-par partners, and was treated by them accordingly. It was really bad.

 

Being a Mum Without Feeling Your Hands

 

What happened next?
The relationship I was in at the time was defined by constant ups and downs. When I was 25 years old, I was in hospital and randomly bumped into my gynaecologist. He asked me how I was doing and I told him that my period was a bit late, but that an early pregnancy detection test had been negative. He suggested taking another test. I thought it was unnecessary, but I took his advice. I visited his meeting room a little later to say goodbye, but he answered: “You need to stay right here. You’re pregnant and we need to do an ultrasound.” That moment felt like I had reached the lowest point of my life. All I could think of was abortion. But when I saw and heard my child’s heartbeat, I changed my mind and decided that I could manage. When I told my then boyfriend about it, he left me.

How did you cope with everything?
It was a complete disaster at first. Behind my back people were saying that it was irresponsible of me to have a child in my physical condition. They were suggesting the baby should be taken away from me the moment it was born. But all this talk was nothing compared to the fact that there were no references for single parents with spinal cord injuries. I was lucky in the sense that the pregnancy went quite smoothly and I was supported by a very good friend. I spent the last month before the birth at “Weißer Hof”, the rehab facility I was in after my accident.

Because you needed help?
Mostly because I wasn’t sure whether I would be able to dress myself alone after the pregnancy, let alone sit without support. When you’re paralysed from the clavicles down, you don’t feel contractions. Besides, I couldn’t tell whether the fluid I lost was amniotic fluid or urine. I didn’t want to leave anything to chance, not least because I was aware that my blood pressure would rise dangerously during birth. That’s why I agreed to a planned C-section.

And then?
(smiles) Then my daughter Madeleine was born. The two of us moved into a training apartment at “Weißer Hof”. Given that I can’t feel my fingers, tasks like changing nappies are quite a challenge. I used to unsuccessfully practice on a doll during occupational therapy sessions. Luckily, I managed just fine once my baby had arrived.

How did your homecoming go?
I was well prepared for all eventualities. Madeleine was very uncomplicated and calm throughout. More often than not, she’d just lay there and look around. I placed her little bed right next to mine and somehow managed to make it all work. I had someone to help with household chores and – a little later – even a personal assistant.

Did it become more exhausting once Madeleine started walking?
She was very curious and understood the situation immediately. She rode along on my lap until she was four years old. After that, she had to hold on to the handle of my wheelchair when we were out walking or shopping. That worked quite well. But I do recall an instance when she was eager to play catch – on the street, in the centre of town. Fortunately, a passer-by managed to pull her back before something bad happened.

Are you different than other mothers?
I have a great organisational talent and an excellent network, but I’ve certainly always lacked the ease of other mothers. I was never in a position to change my baby’s nappies on the floor or to live for the moment. I have always had to plan everything in advance, meaning I am restricted in my flexibility. Apart from that, everything is as normal as one would expect.

And you got pregnant again…
Madeleine was already four then. I had a new partner and was in a completely different situation. Having a second child was a conscious decision on my part. Unfortunately, this pregnancy proved to be very complicated. I struggled with bleedings and other complaints such as false labour. My son Raphael was born seven years ago via another Caesarean section. He was livelier than his sister at first, but today he’s very relaxed and reliable.

How did your children deal with your spinal cord injury?
They proactively asked certain questions, but also simply grew into other aspects. I’ve always tried to explain everything to them in an age-appropriate manner. I described the spinal cord as a motorway and that an accident on mine is preventing many cars from passing through… Raphael’s father and I separated, so I was a single parent. This probably contributes to the fact that my children became independent at an early age – they dressed and washed themselves early on. They perceived the wheelchair as a toy for a long time. This is the only environment they know. They don’t know me any different.

Is your wheelchair an issue among their classmates?
My greatest fear was always that they would be teased or even embarrassed because of me. But that was never the case. On the contrary, my daughter always speaks very proudly of me. She speaks about spinal cord injuries in school presentations. This allows her to impart her knowledge to others.

Claudia, Madeleine, Raphael and dog Ronja (Markus Frühmann )
Claudia, Madeleine, Raphael and dog Ronja  © Markus Frühmann

 

Sexuality, Relationships, and the Desire to Climb Stairs

 

Which direction did your career take?
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…

Fate?
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.

Claudia with her kids and their au pair (Markus Frühmann )
Claudia with her kids and their au pair  © Markus Frühmann

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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