My Life With a Spinal Cord Injury. Part 2.
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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.
Being a Mum Without Feeling Your Hands
Claudia, in the first part of our interview you told us how you – as a young woman – fell into a deep, sorrowful hole after your stay in a rehab facility. 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.
(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.
Which direction did your career take?
I discuss sexuality with other spinal cord injury patients.
Tomorrow, in the last part of our series, Claudia discusses her exciting career as a rehab therapist.