“Yes, it sucks but life goes on!”
Community user “Francescolife” bounces back from strokes of fate – an interview.
This blog series contains interviews with active Community users so that you can get to know them even better. If there is also something you would like to ask the users, simply write a comment and the users will reply themselves.
Francesco, what was your first thought when you were diagnosed with spinal cord injury?
Already before my spinal cord injury, the entire left side of my body was paralyzed since I suffered from a cerebral haemorrhage and a brain tumor at the age of 19. At first, I was only able to walk with a special leg brace and then I was using a walking cane and crutch. Most of the time, the pain was unbearable but I fought pretty damn hard. It took me 16 years before I was eventually able to walk again normally at the beginning of 2015 – it was like a miracle. There was even a report about me in the Swiss newspaper 20 Minuten.
Unfortunately, however, this did not last very long. Suddenly my previously healthy right leg started buckling and I fell without warning. Because I had been unable to walk properly for years, I had developed arthrosis in my leg and spine in addition to a herniated disc. After a fall in October 2015, I had surgery. The estimated time of surgery was 1 h 15 min at max but it took 4 h 30 min. After the surgery, I felt nothing or very little and was unable to move my legs and pelvis. Furthermore, I was suffering from vertigo and mild spasticity.
Seriously, it took me a few days until I realized that it would not work. The doctor talked and talked but I was not mentally present. Somehow, I did not want to understand or perceive what had happened. At that point, the only thing that mattered was to quickly get rid of the damned pain. Since I had experienced several harsh setbacks in my life, I thought everything would be fine in the end... however, time passed by and nothing changed. It was only much later that I realized what had happened.
It was then when several examinations were undertaken and continued for months. The surgeon said nothing. Eventually, it became clear that a part of the central nervous system had been touched or rather severed. Today I have a paraparesis, i.e. an incomplete spinal cord injury.
Which challenges do you experience in everyday life? Is there anything in specific that bothers you or that you enjoy very much?
Every day is a challenge. Every move and transfer is a challenge. Going out is a surprise and challenge every time.
What bothers me most is the missing accessibility and indifference of the people.
How do you experience people’s behaviors towards you? Do you recall an extraordinarily great experience or have you experienced anything extremely negative?
There are huge differences and they strongly depend on the region. In Western Switzerland the people are much more helpful whereas in German-speaking Switzerland they are more reserved and indifferent. I once have even received a quite terrible comment: “There you are: someone who lives of my taxpayers’ money!” Hello?? You ignorant, ignorant person, I finance my living myself since I have paid my taxes. But there are also great experiences: e.g. two people helped me spontaneously to enter or exit the train.
What would your recommendation or advice be to someone who suddenly becomes paralyzed from spinal cord injury?
Hey there, yes, it sucks but life goes on! And there is support out there, you are not alone. Above all, you cannot change the situation. But what you can do is enjoy life to its fullest and go on living it. And no matter whether you had thought before that one hundred or one thousand people loved you and eventually less than a handful remain – they do love you, therefore also think of them because your well-being means everything to them!
Don’t try to fight it and don’t be mad at yourself or at what has happened, don’t keep asking yourself: “Why me, why?!” It is what it is, make the best of it and keep in mind that there is much worse suffering out there. The sooner you accept this, the sooner the pain goes away. And again: You are not alone and you don’t need to cope with everything by yourself.
What do people say or ask again and again? And do you have a smart reply for them?
Yes, the topic sex, whether my pride and joy still works. And frequently I am being asked: “But is there nothing that can be done so that you can walk again, or at least for a short time?”
Here is my answer: It is rarely the case that a paraplegic does not have sex since the penis is not connected to the spinal cord but it is a muscle that stiffens through blood circulation and emotions. And yes, although I have many impairments and it does not always work out and I cannot feel it, it does work. You only need to pay attention to certain things and use your imagination. We, too, experience emotions and have needs! And should it not work anymore, we are lucky enough to have good medication available which can make it work. The question rather is: Would you have sex with a paraplegic?
How do you feel about jokes related to disability? Has there been a joke that has made you laugh?
Yes, once we were on a longer car ride when my uncle was joking: “Should we take a short coffee break? Then you can stretch your legs.” We looked at each other briefly and then started laughing like crazy.
What kind of social relationships do you have with other paraplegics in Switzerland?
Currently, my only contact with other paraplegics is through the online Community for people with spinal cord injury, when I am at Swiss Paraplegic Centre or when we go on an outing with the Fribourg Wheelchair Club like Quadrix or on a trip.
What else would you like to tell the Community users about yourself or in general?
Live your life as if you had a 1000 lives but be aware that there is only one. Help fellow humans because all you give will be given back to you one day. And yes, our situation may suck big time or seem unfair to many of us. However, it is what it is and neither me nor you can change it...therefore, enjoy life to the fullest and you won’t regret it! And no matter how bad it is or how bad your experience was – there is always somebody out there who was more unfortunate. Last but not least: communicate! If you have something on your mind, talk about it – you are not alone.
[translation from the original German blog post]