Before I became ill, I had always found myself to be quite patient, whether it was waiting for a bus or a result or any other situation where I had to wait. But the illness made me realise how impatient I actually was. Impatient for things to happen at the pace I wanted, the way I had planned them, when I had planned them. Being patient was difficult because it meant accepting the weakness and fatigue, the dependency, the difficulties of the disease.
A patience of weakness and fatigue
It is a patience that is more necessary for those days when weakness and fatigue are king and when even getting out of bed without a wheelchair seems almost superhuman. Indeed, a lot of patience is needed when one has the impression of regressing, of not being able to do something that seemed to be taken for granted or that one was still able to do the day before. And even if you manage to do it, each activity takes much longer, a time that sometimes seems interminable.
This patience of weakness allows you to persevere, to move forward in spite of everything, and to “fall six times, get up seven”, according to the title of the book by Philippe Labro. We learn to accept that what is not done today can be done tomorrow or the day after tomorrow and that this is not an issue if it gets postponed. Achieving the objectives that we really want will require an adaptation of the plan and the rhythm. In the end, I will be able to achieve what I set out to do, while learning to really appreciate the concept of “delayed gratification”: resting to be fitter later, having the patience to wait for the treatments to work. Even if it’s not really what you wanted.
A patience of dependence and accessibility
When you are in a situation of even partial dependence, the organisation of time and activities is no longer completely up to you. You have the patience to ask for the help you need and the patience to wait for it to be given to you. It is the patience of the lack of autonomy, but also of the lack of accessibility. Indeed, even if it is potentially accessible, one may still need help, for example to make a wheelchair lift work, to get off a train or a bus while the ramp is being deployed, etc. It is accessible, but one does need the patience to ask for help. It’s accessible, but you’re still not completely independent.
It also requires patience in communication, to make people understand what my needs and difficulties are, but also to deal with sometimes inappropriate or annoying behaviours. Often, it is the repetitive aspect of certain situations that is wearing and requires an extra dose of patience, just as it is necessary to deconstruct the prejudices that exist towards people with disabilities:
– You can’t do that! Come on, it’s impossible.
How many times have I heard this remark in the face of an obstacle apparently deemed insurmountable for someone with a disability like me.
A patience of action in the face of limits
Here again, patience is needed, patience of action that integrates prejudices and limits, real or imagined, without letting them stop us. Others often take it upon themselves to remind us that this is not possible. But the tragedy would be to believe that, as a person with a disability, some things are really completely impossible. There are certainly a handful of things that will not be possible. But when you know that there is slalom skiing for the visually impaired or skiing with a special ski for wheelchair users, it becomes quite clear that everything is possible. Really almost. But everything is possible, only with perseverance, flexibility, adaptability and creativity. I know I am an inveterate optimist, but I sincerely believe that anything is possible. One should not censor oneself because of one’s disability, give up dreams or projects. You may have to revisit and adapt them, understand the meaning you wanted to find in them and find it somewhere else. So, if I had wanted to become a prima ballerina – which I didn’t – the wheelchair would clearly have been a difficult obstacle to overcome. But in no way does a wheelchair prevent you from dancing or performing. Having a disability makes it possible to question the real motivations behind dreams and projects more deeply, to understand their why.
Of course, it is not easy, but everything is possible with humour, flexibility and willpower, even if it takes a lot to evolve in a world that is not yet completely adapted. It also requires a lot of courage to never choose the easy way out, which would be to give up and abdicate the autonomy and independence that is still there despite everything. With a chronic disease, every day is a challenge. But it is also an opportunity, to get out of that famous comfort zone that we are always told we have to learn to leave. You can’t stay there anyway if you want to accomplish anything with a disability or a chronic disease. Choosing to do what some would say is impossible is a sure way to go to bed proud. Just getting up, getting ready, going to work, going home, seeing friends are all small successes that, although tiring, fill one with pride. Indeed, all these activities require more effort when everything is more difficult. We know how much they cost us and to have succeeded in achieving them is a source of even greater satisfaction.
Following one’s dreams with a disability means going even further. Indeed, it gives us the chance to remember that life is here now, that it is unique and that we must therefore give it meaning as we can. It is therefore necessary to have the patience to adapt one’s dreams, to rebuild one’s projects and to give meaning to this life which, according to some, would no longer have any because of the disability or the chronic disease. A big mistake!