How long do paraplegics live


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Claudia is quadriplegic and cannot move or feel her body from the shoulders down. In our interview, she gives us a glimpse behind her facade - into an impressive life.

 

Accident, wheelchair and the great sadness

 

Claudia, you are dependent on a wheelchair. What happened to you?
I was 16, a student at the graphic arts college with a focus on photography. In November 1998 I spent the afternoon with friends in a nearby shopping mall. I still remember the red donut stand there and how it smelled like warm sugar.
When we drove home it was already dark. I was sitting in the back seat and I wasn't buckled up. We got off the road, the car rolled over and I was thrown through the rear window. The other two were unharmed. I tried to get up and move my arms and hands, but it was impossible. I almost couldn't breathe. When the ambulance came, I immediately asked him if I had a cross-section. He didn't want to say anything about it. Then I was given medication.

What's your next memory
I was in the emergency room of a hospital and had my piercings removed. Because of the cuts on my head, someone shaved off my long black hair. A disaster for me then. I didn't know what else was in store for me ... I was diagnosed with a fractured skull and broken ribs. My spinal cord was at the 6th / 7th grade. Cervical vertebra imprinted by a bruise. Since then I've been paraplegic from there down.

How was the time in the intensive care unit?
At first I was exhausted, full of medication, and slept a lot. When I got better, I had breathing exercises every day. I remember thinking back then, “I'm 16 and I've never had a boyfriend. No man will ever be interested in me in a wheelchair. ”But somehow I quickly realized that there was nothing I could do about the situation. That helped me to accept it all.

Did you have any support
Yes, my mom was permanently present during the three weeks in the intensive care unit. I was grateful for it, but it was almost too much for me at the time. Looking back, I also think it wouldn't have been a mistake to talk more about everything to each other.

The next station was rehab, wasn't it?
Exactly. After two months in hospital, I went to rehab. It quickly became clear that I still had a few functions on the left, but the right half of my body was working a lot worse.
I was extremely adolescent and a challenge for the carers. They told me that my skin was red from sitting too much and that I had to go to bed at 7 a.m. to relieve them. I should stick to catheter times, show discipline, watch my body. I have to write down what I drink so I know how much I pee. I just thought: "What do you all want from me?"

Have you "settled in" somehow?
There were many other young people there who had spinal cord injuries. We made friends, built up and motivated each other. On the weekends we challenged ourselves and counted the laps that we could drive with our wheelchairs. I came home after seven months.

From the protected environment to everyday life. How was that transition?
I was exhausted and suddenly I didn't know what to do with myself. I could no longer move or feel my hands and fingers after the accident. Back then everything was still analog and so I could no longer set a film on my own, let alone take a wheelchair into the positive darkroom. My dream of becoming a photographer was over. I switched to different schools and while my friends had jobs and responsibilities, I fell into a deep hole. During the day I hid in my room and at night I was out and about. I partied a lot and drank too much. When I was 19, my mom moved out because it was no longer possible to work together under one roof ...

That sounds lonely.
Yes, I was too. I almost never got out of this situation. I was so dissatisfied, I looked for partners below my level and was treated that way. It was bad.

 

Being a mom without feeling in your hands

 

What happened next?
My relationship at the time was a constant up and down. When I was 25 I was in the hospital and happened to meet my gynecologist. He asked me how I was doing and I told him I was a little over with my period but an early detection test was negative. He suggested I take another test. I thought it was an exaggeration, but followed his suggestion. When I came to him a little later in the conference room to say goodbye, he said: “You stay there for the time being. You're pregnant and we're going to do an ultrasound. ”At that moment I thought I had hit rock bottom. For me, an abortion was the only option. Then I saw my child's heartbeat at the sound and decided to do it. When I told my partner at the time about it, he broke up with me.

How did you do it all?
First it was the worst case. People have said about me that it is irresponsible in my physical condition to have a child. It should be best taken away from me as soon as it is in the world. For me, the fact that there was no single parent quadriplegic experience was even harder than the talk. Fortunately, the pregnancy went quite smoothly and I got help from a good friend. I spent the last month before the birth in the Weißen Hof, the rehab facility I was in after my accident.

Because you needed help?
Mainly because I didn't know whether at the end of my pregnancy I would even be able to dress myself, let alone sit. If you are paralyzed from your collarbones down, you will not feel labor either. Also, I couldn't tell if the fluid I was losing was amniotic fluid or urine. I didn't want to leave anything to chance, also because of my blood pressure, which shoots dangerously high when giving birth. That's why I arranged a planned caesarean section.

And then?
(smiles) Then my daughter Madeleine was born. The two of us moved into a training apartment at the Weißen Hof together. Because I can't feel my fingers, things like changing diapers were a challenge. When I practiced on a doll during occupational therapy, it never worked. But it does with my baby.

How was your coming home?
I was well prepared for everything and Madeleine was very straightforward and calm. Often she just lay there and looked. I had her crib right next to mine and somehow managed to do it all. I got help with the household and later personal assistance.

Did it get harder when Madeleine started walking?
She was eager to learn and understood the situation immediately. Until she was four years old, she rode on my lap, after which she had to hold on to the handle of my wheelchair while walking or shopping. That worked fine. But I remember one situation when she wanted to play catch. In the middle of the city, on the street. Fortunately, a passer-by was able to pull it back before anything worse could happen.

Are you different from other mothers?
I have great organizational skills and a good network, but I definitely never had the ease of other mothers. I could never just lay my child on the floor to change their swaddling clothes or live the day, but I had to plan everything well. This restricted my flexibility. Otherwise everything is normal.

And you got pregnant again.
Madeleine was already four, I had a new partner, was in a different situation and made a conscious decision to have a second child. Unfortunately, this pregnancy was very complicated, I had bleeding and symptoms such as sward pains. Seven years ago my son Raphael was born through another caesarean section. He was livelier than his sister, but today he is very relaxed and reliable.

How did your children deal with your paraplegia?
They asked some things, they grew into some things. I always tried to explain everything to them in an age-appropriate manner. That the spinal cord is a highway and that I had an accident there. That many cars can no longer get through ... Raphael's dad and I broke up, so I was a single parent. This probably contributes to my children becoming independent very quickly, dressing and washing on their own at an early age. For a long time they saw the wheelchair as a toy. The two do not know any different. You don't know me any other way.

Is your wheelchair an issue with school friends?
In fact, my biggest fear has always been that they would be teased or embarrassed for me. But that was never the case. On the contrary: my daughter always presents me with great pride and always talks about paraplegia in presentations. In this way, she brings her knowledge closer to others.

 

Sexuality, relationship and the desire to climb stairs

 

In which direction did you go professionally?
I always wanted to work with people and after Madeleine was born I trained as a life and social counselor, systemic coach and couple and sex counselor. This also helped me to get to know and understand myself better. I have been an activation therapist in a rehabilitation center for five years and have been in close contact with other wheelchair users. A lot happens through example and demonstration on my part. Even if you have good physiotherapists or occupational therapists - with a cross-section everything is always different.

You meet paraplegics every day. What is it that worries you the most?
Every patient is different and age and gender also play a major role. Much, however, revolves around an idealized role model. Women worry that they will no longer be able to run their household. Men are often the higher earners and do not know how to support the family with a paralyzed body. Social body images also play a role. The attractive, sensual woman. The big strong man who walks into a room. That can no longer be fulfilled so suddenly. Our ultimate goal is that patients get what they had back. Even if different.

What role does sexuality play for those affected?
It takes courage, but of course many questions arise here. Men are mostly concerned about whether they will ever get an erection again. One should talk about this - also with the partners. Their concerns and fears are often neglected, they don't know what to do or what to do. Of course, everything changes when someone has no more sensations. It's about trust, appreciation and physical closeness. I always use examples, but I still shock patients again and again by the fact that I am a single parent quadriplegic.

Are you already a bit tough with spinal injuries?
Of course you dull. But when I see children in the situation, it hits me extremely. Or very old people. That they have to recreate their lives all over again affects me very much. Sometimes I think that there are certain things in life that you just cannot avoid ...

Fate?
That sounds so negative, but yeah - let's call it that.

Are you actually in a relationship?
Yes, for more than three years. Obviously, my friend doesn't like simple and boring situations. (laughs) We met at work when he was training to be a nurse.

Does his professional background help you?
Of course it took the pressure off initially because he knows what a catheter is. But I do not want to and will not mix up certain things. Apart from an emergency, I strictly separate sanitary matters from him. The one I sleep with shouldn't be the one who helps me in the toilet. I think if you do that, if you make your partner a carer, it does something to a couple. I don't want a loyalty or commitment relationship. I want someone to be with me because of me and not because they think I can't do it on my own. We have a perfectly normal relationship like any other. My partner also rolls his eyes when I ask him to clear the dishwasher.

Would you like to tell all of this to your 16 year old self?
Oh, I wouldn't have believed it at this stage anyway. Just as those affected often don't believe me today when I tell them that there are prospects. I am convinced: “If you give up, your life will remain negative. You have to start fighting. You can take a positive path if you want. ”Everyone has the opportunity to live a good life.

Is there something that you still long for?
I would be lying if I said I wouldn't like to just put on a nice dress without messing around. And travel. It's so tedious in a wheelchair. Yes, I would like to rent a cheap hotel room that is not wheelchair accessible. Or climb around Austria's castles and ruins. Or lie in the bathtub for hours. And I would like a maisonette with a staircase in which I can climb the steps.

 

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