Non sei fregato veramente finché hai da parte una buona storia e qualcuno a cui raccontarla (A.Baricco – Novecento)
Killed by the “bitch” – how he himself was used to define the Amyotrophic Lateral Sclerosis after years of daily fights againts the illness, lost his battle one year ago the Italian soccer player Stefano Borgonovo. When last 27th of June the whole football’s world mobilized to visit the mortuary of the former striker, there is who who watched over him for years, sharing day by day the pain of the disease as the joys of that life that Stefano, from his bed, was able to appreciate and teached to do it.
I met Stefano when I was 15 years old – stated the wife Chantal when I interviewed her on 2011 – I get engaged with him when I was 17 and I married when I was 21. We have 4 children: Andrea, Alessandra, Benedetta and Gaia. When ALS arrived, someone suggested to me: “Take a nurse”. No, thanks. I do it alone, I love Stefano. My sister Yvonne and my older sons helped me. Now we need also an help, because Stefano is no longer self-sufficient and we cannot cover the turns alone. We must clean him, shave him, brush his theet, comb his hair, dress him. He weighed 78 kg, now he fell below 50. It is one thing to say; You know, he is sick of ALS. Another thing is to live inside the ALS. It is impossible to understand. The Gehrig’s disease disrupts families.
The woman, strong in the certainty of her love, knew the importance of living the suffering as a family, together in all kinds of difficulties. But Borgonovo not been limited to grit and keep going: they they wanted to involve many people in a bigger work, in order to help all the people affected by Gehrig’s disease. In 2008 was born the “Fondation Stefano Borgonovo Onlus” – in which Chantal works in the forefront – whith the main objectives of supporting research on this illness and of making contributions for home care and hospital care for people with ALS
Psycological support to families: this is the most important thing that we want to give. Listening her experience it results clear why she feels the need of helping the families which are living what she lived. My husband was discharged from hospital on 27th of July 2008. That day I found myself at home, alone, with a ventilated person. AI had 2 ventilators, some cannulas for the suction and some filters. I needed even the aspirator, a instrument that a person with ALS uses almost hourly.
Right from the start things were not easy for Chantal and her family, and over time has not been better. Mrs. Borgonovo recount also how she had to spend 7 hours in queue at the hospital, with Stefano into a room full of people (for racconta anche di come è dovuta stare sette ore in coda in ospedale, con Stefano in una stanza piena di gente (for people with tracheostomy is really risky to come in contact with sick people) because his peg-probe went out. After 7 hours the doctor intervened and the operation lasted around 5 minutes. A few days later the peg-probe came out again, at home. I saw in my husband’s eyes the terror of suffering the same ordeal. I did it myself, I took the tube and I put it in my husband’s stomach.
Turns in heroic deeds, these small daily gestures that the lot of families like Stefano’s one make every day, fighting together because is the unit that carries forward the family, in every kind of situation. Daily feats that also change the couple’s relationship. If at the beginning Chantal has felt change of role, from wife to nurse, overtime she understood that this bothered to Stefano and that it wasn’t right for herself. I’ve been back to being the wife of the first: as in all the couples who have been together for 30 years, there were quarrels and responses to tone, despite, but taking into account, Stefano’s conditions.
When Chantal talks about Stefano’s hospital admissions, about the illness, about the journeys to hospitals or about the life at home, she always talks of “us”, never of “him”. I lived everything with him. The disease is of him but I am the wife of the disease. We always lived together the beautiful moments: we love each other living together even the disease.