Me, Stefano and multiple sclerosis: many lives in one

“I confess that I have lived” said Pablo Neruda. Without making blasphemous comparisons, a post a few days before my birthday could only open like this. With the many lives I’ve lived in one. With the many identities that I have been. With the many people who have followed one another in me and this suggests a fragmented identity, if we want also raped by the disease.

“Come on Laura, after all you’ve lived it. You did it. Indeed, we have done it together and more than once. There are those who never do it“. I often hear these words from Stefano every time I look at people who move without realizing it, who play sports, who travel, who work (and he is lucky enough to do it out of passion). Each time he skilfully takes me back to previous lives: “…But you did! Think of how many have never done it or can’t do it“. Little consolations that come after something reminds me, like a slap, of today’s paralyzed and inert body, the non-self-sufficiency, the disability that ruthlessly goes on. Little consolations but not so much, if you look at the glass half full.

Just broaden your gaze. Observe what is happening around. No need to go far. I’ve had so much in life. I’ve never wasted it. And so of course I have lived many lives! I wrote on social media “these 48 just turned I feel them all” not only in the sense of illness, but in a sense of completeness. I don’t believe in one identity, I believe there are many ‘I’s. For example, I can’t believe that the person of a few years ago, and going back to the working wife, the restless and passionate woman, the young adult, the unresolved teenager, the shy child, was me.

What is the normal estrangement of memory, however, I feel it even more strongly: because I don’t remember what it was like to be in that body, to make those gestures and not even notice them. Today I’m starting to not feel ‘life’ the 12 hours a day filled only with assistance, hygiene and dressing, bed and armchair, therapies for pain and spasms, husband’s rushes to pick me up after my fall, all identical and invariable, until – finally – I shut down in the bed.

But those few glimmers of light, color, relationships, minimal activities allowed me by the disease, are also life. There is probably life even in the daily ferocity. In my battles, which I carry on with little strength compared to what I would like. In the narrow moments with Stefano, I mean the beautiful ones. In the people I love. In the few new scenarios I can see. On the rare days of physical respite. In beauty, why there’s always a bit of beauty to draw on, whatever your circumstances. In the evening, in bed, before turning off (I use this verb because sleep for me is a saving break from the routine), I ask myself, “you managed to see some beauty today?”.

There is life even in this current life, bare and ferocious. In the body that complains all the time. In pissed off about the rights that are missing. In barriers and inaccessibility. Anger and commitment are vital, an effective engine to move forward

Yup, I confess that I have lived, and deep down, even in this harsh and ruthless present, I am still living.

(Photo credits: Luca Coscioni Association)

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