Teleflex for active living: people up close – Joséphine

Joséphine, 26, is a recent graduate in neuropsychology. A former top athlete and member of the French national team, she was a speed skater until a terrible accident during training at the Pôle France 4 years ago. This nasty fall had serious physical consequences, including an injury to the C7 cervical vertebra, which turned Joséphine’s life upside down and left her a quadriplegic.

What is your everyday life like, both professionally and privately? What is your experience of intermittent catheterisation?
Of course, my rollerblading accident has had a big impact on my life, but not really on my career, because at the time it happened, I was studying psychology. So I was able to continue my studies and get my degree. I was lucky that my field of study was compatible with my state of health, which allowed me to continue “as if nothing had happened”. This would not have been the case if the accident had happened a few years earlier. In fact, before going to university to study psychology, I was at STAPS (a course that combines sports practice, scientific teaching and professional training) and, in a way, I was lucky enough to get my bachelor’s degree first and then change direction . If I had stayed at STAPS, the situation would have been much more complicated and I would have had to rethink all my career plans.

I’ve never experienced the world of work as an able-bodied person, so I can’t speak of any significant change in that respect. But there’s no doubt that in my daily professional and personal life, I face difficulties that are certainly different from those encountered by able-bodied people, in terms of accessibility and managing day-to-day life.

On the other hand, my life as a student has changed, it hasn’t really been what you might call “normal”. It was a bit different for me, because I was doing my two years of rehabilitation and my studies at the same time. So I had to set up distance learning courses at the rehabilitation centre. But I was lucky that this happened during the COVID period. So my courses were already mostly distance learning, which made it easier for me to manage my studies and, in the end, I was in the same situation as all the other students. That was a good thing for me, because I didn’t feel out of step with the others.

As for my private life, obviously it’s changed a lot. You have to remember that my family lives in the Alpes de Haute Provence, while I lived alone in Nantes. So after my accident, I didn’t have a carer to support me on a daily basis. Therefore, my biggest issue was finding suitable accommodation that would enable me to live independently, without the daily help of a relative. When I was discharged from the rehabilitation centre, I was fortunate enough to be able to quickly find a CROUS (Regional Centre for University and School Work) apartment in a student residence.

But when I graduated, I lost my student status, so I could no longer benefit from this accommodation. So I had to start looking again for an apartment in the private sector. It took 6 months of searching before I found one that met my needs and requirements in relation to my situation.

The other thing that radically changed was the way I practised my sport. I was a top athlete in the French rollerblading team. It was my passion and I lived for it. After the accident, my relationship with sport changed completely. I’m no longer interested in competitive sport. In fact, I only engage in sport twice a week, whereas before I used to train every day. To put in that much effort and compete at a high level, you really have to be passionate about it… and my passion wasn’t really sport itself, it was rollerblading. And because of my condition, I’ve “written it off”. So now I use sport mainly to maintain my muscle tone and physical capacity, which is essential in my condition. But above all, sport provides a way for me to socialise. Sport gives me the opportunity to meet up with a group of friends, it gets me out and about and it’s great to share, laugh and just see other people.

What role does self-catheterisation play in my life? I self-catheterise 5 to 6 times a day, on average every 3/4 hours. I don‘t see it as a burden or a constraint. I know I have to live with it, and I’ve accepted that. But it’s still a source of stress.

What probably helps is that I’m lucky enough to have some feeling in my bladder. So, I can catheterise myself if I need to. I’m also lucky enough to be able to catheterise myself directly in my wheelchair, without having to transfer, which removes an extra source of stress and difficulty. Particularly in unfamiliar places, it’s still stressful not knowing where I’m going to be able to catheterise and whether the toilets are accessible.

Catheterising is an important part of my life. It’s something I have to do every day and I’m one of those people who catheterise themselves at night, as I was taught at the rehabilitation centre when I was learning to self-catheterise. I had to catheterise 6 or 7 times a day, including at least once at night.

When I left the rehabilitation centre, I tried to skip the night-time catheterisation for the sake of convenience. But following a serious urinary infection with pyelonephritis, I realised that night-time catheterisation was essential to avoid this type of health problem. I often get up once or twice a night. So yes, it’s an inconvenience, because it requires a certain amount of logistics and organisation, but you get used to it. I end up getting up naturally, out of habit, I’ve adopted this rhythm. What also makes it easier for me to catheterise at night is the fact that, as I explained earlier, I don’t need to perform a transfer, so I can catheterise myself directly in bed with a catheter connected to a urine collector.

Let’s delve a little deeper: What’s your story to share with our readers today? Please tell us about your journey and what makes it special. Tell us about some of the extraordinary moments you’ve experienced.
I don’t have a specific story to tell. What I think is important to highlight, for anyone who can relate to my story, is what this accident and this disability has brought me, despite everything, in a positive way. Having gone through it all, I realise that I’m much more aware of myself, of who I am, of my values and my strengths.

Perhaps what makes my journey so unique is the fact that this event has, in a way, been beneficial for the direction of my professional life. I was originally studying to be a clinical psychologist, but then I was hospitalised after my accident, which changed things. As part of my bachelor’s degree, I had to do a work placement while I was still in hospital. Since I couldn’t leave the hospital, I decided to do my work placement there so that I wouldn’t fall behind in my studies. I did it with a neuropsychologist who works with patients with brain injuries. This placement introduced me to a speciality that I hadn’t thought about before, but which I ended up loving. So I went on to specialise in neuropsychology. Without that experience, I would never have gone down that career path.

Of course, I use my situation and experience to provide patients with the best possible support. I like to think that patients who are in the same ‘condition’ as I am find it easier to identify with me and therefore build up a relationship of trust. I certainly hope that my experience of disability helps me in this way in my day-to-day work. Somehow, I’ve turned this difficult and restrictive event into an opportunity for professional development.

What is your biggest challenge in everyday life and what would you say is your greatest opportunity? How do you motivate yourself or inspire others?
My greatest opportunity lies in the professional openings that this change of life has offered me.
I’m in the process of setting up my own business. My aim is to work in the field of rehabilitation with people with brain injuries, but I would also like to work with top athletes. What interests me most regarding sport is being able to provide individual psychological support, mental preparation, performance support and follow-up for people who have suffered a concussion. My work will revolve around these two areas, each linked to my experience… one with my background as an athlete and the other with my experience as a person with a brain injury.

It’s not an obvious question, but it’s true that I’m often told that I’m an inspirational person. Maybe it’s because of my former status as a top athlete, which in a way gave me the keys and enabled me to overcome my disability quickly. I’m sure that helps me a lot when it comes to my way of living and with accepting this situation.

Of course, individual character plays a big part and until you’ve been through it, it’s hard to know how you’re going to bounce back after such an event. My ultimate goal was to become self-reliant. It was unthinkable for me not to be independent as soon as possible. I needed that sense of freedom, I didn’t want to be dependent on outside help in my day-to-day life, to be dependent on a carer, to feel that I was being constantly helped and so on. And that was my biggest challenge shortly after the accident, and it still is: to be as independent as possible. And, with all due modesty, I think that for a quadriplegic, my level of independence is quite remarkable, and it’s certainly a fine example and a source of motivation for others. People regularly say to me “you’re impressive, for a quadriplegic you’re doing really well”.

After all, isn’t that what it’s all about, inspiring others?

Looking back, what are you most proud of? And why?
Graduating, without any hesitation. It’s an event that might seem insignificant, and yet I’m very proud of it because it was so complicated to get there. It’s not easy to get a Master’s degree in psychology, but on top of my rehabilitation and adapting to this new life, it’s been quite a challenge. It wasn’t easy, but I gave myself no choice. And at the end of the day, I’m proud to have achieved my goal despite the obstacles that life has thrown in my way.

It’s different for everyone, but personally I felt that if I stopped, if I didn’t keep the momentum going and allowed myself to take a break during my rehabilitation, I wouldn’t be able to make it. It was essential to come to terms with my disability without stopping living my life.

I said to myself, I’m going through something tragic that’s going to change my life, so if I stop studying, what’s my future going to be? It reassured me to know that my future was still there, that my career plan still existed. It gave me motivation and the desire to overcome everything.

Do you have any tips for everyday life, work, travel and leisure with respect to intermittent catheterisation?
One of the first pieces of advice I would give is to be patient. Simply because, as someone who does intermittent catheterisation but is also a quadriplegic, everything takes longer. It’s important to change the way you think about time so that you can keep yourself in the right frame of mind and not find yourself in emergency situations when it comes to catheterisation. The other piece of advice is to be strict with yourself. If there are important things to do, you have to do them, especially when it comes to catheterisation. For example, if you forget to catheterise, for whatever reason, you must set alarms.

Finally, there are many seemingly trivial situations that can cause anxiety when you do intermittent catheterisation and you’re also a quadriplegic. When you go out, you’ll have a lot of questions running through your mind: will I be able to park? Will I be able to get in through the entrance, is there a lift, etc? Are the toilets accessible and suitable for my catheterisation?

To avoid this, it’s essential to prepare your trip well and find out as much as possible in advance if you’re going to an unfamiliar place and you know that there’s a good chance you’ll need to catheterise. Whether we like it or not, this is always a source of stress for anyone who self-catheterises, whether they are experienced or not. Anticipation is the key to a relaxed, anxiety-free day.

Anticipation is also essential when it comes to managing your day-to-day life, and a lot of thought needs to go into this: estimating how long it will be before you have to leave, trying to decide whether it’s better to catheterise yourself beforehand or not, and so on. The aim is to avoid finding yourself in a situation where you haven’t been able to self-catheterise and you become anxious about what’s going to happen next.

The most complicated thing is going on holiday and travelling. You have to prepare four times as much as ordinary people. You have to think about everything, otherwise it’s a disaster… especially if you’re going to the other side of the world. It’s difficult to leave on an impulse when you’re quadriplegic. So what I recommend is the same as in everyday life, but with twice the foresight: perfect organisation, getting as much information as possible and having the answers to all the stressful questions you might have.

Do you have any final words for our readers?
My final words are very simple. Living with a disability of any kind is inevitably more complicated, but if you want to, if you give yourself the means to do so, and if you have a good ability to adapt, you can live with it.

I think that once you’ve understood the ins and outs, as well as the obligations associated with disability (routine, preparation, self-discipline, motivation, etc.), and you’ve put the right things in place, everything goes smoothly. The hardest part is adopting new habits that are adapted to our state of health, but once you’ve done that, life goes on. I’m not going to idealise my experience, because of course it’s still more complicated for me than it is for an able-bodied person, but you can still manage to live well.

Joséphine, many thanks for these interesting insights, and we wish you all the best for the future.

Image source: private