Going blind while falling in love


By the time I was 26, in 2010, I had deemed myself as a perpetual non-dater with little to no motivation of ever meeting my soulmate.

Growing up I wanted to be a nun because it would be the easiest way of navigating the dating pool. Then I learned about religion and knew that becoming Mother Superior wasn’t the best career choice simply to avoid boys.

And then I met him, him the guy that I learned was my true love. Believe me when I say this, just writing that sentence makes me want to throw up the sugary ”love-is-great” statement. I’ve never been someone who thought there was a perfect person for everyone and I still don’t. I don’t believe that there’s only one soulmate that each of us must find in the endless sea of humans. I do, however, believe that soulmates can evolve from absolutely nothing.

Him, my guy, is Socrates. No, no, not the greatest philosopher of all time (although, wouldn’t that be a riot!). My guy is Socrates, a non-Greek who isn’t into philosophy (the latter of which is a travesty…). We met briefly in 2010 through a mutual friend, but he didn’t leave a good first impression. Instead, we reconnected a second time – five months later – at that same mutual friend’s going away party.

That night we ended up sharing a cab and exchanged phone numbers. I felt compelled to let him know what my first impression was of him and texted an unfiltered, “You’re hot, but an a**hole”. He responded with a classy, “You’re hot too, but not an a**hole”. I knew then he was a keeper.

We spent the next several months hanging out together at occasional gatherings until suddenly, it became more consistent. From there, our love grew and grew and continued to grow until the balloon that kept filling up with water formed into a rock, so it could not burst.

And while this rock-solid partnership continued to take shape, a shocking test to our relationship came our way two years into it. The year was 2012 and it was a trying year as I was diagnosed with Usher syndrome, the most common genetic cause of combined deafness and blindness.

My hearing loss wasn’t a surprise to us since I had already been wearing hearing aids since the age of 4. The discovery of having progressive vision loss was a discovery neither one of us anticipated.

While at the doctor’s office I was told I would be blind in 10-12 years, that I should start training with a mobility cane ASAP, and that I should start taking a high dose of Vitamin A – enough to be toxic for my liver – and through it all, Socrates kept his head up like the non-philosophical champ he is.

My head on the other hand was down. Down like a duck searching for fish below the water, but never coming back up with food for its belly.

For the first time in my life I saw myself as disabled and unable to live life independently. The sheer shock of the diagnosis was debilitating enough that the precautionary measures made by the doctor fueled the fear of navigating life blindly. I was imagining how much my life would be unlivable. How losing my vision at a rate to-be-determined would be soul sucking.

About four days after my diagnosis I gave Socrates an “out.”

Very casually, while sobbing and wheezing, as I tried to breathe and cry at the same time I said, “Socrates, if you feel that this diagnosis is too much of a burden for you, I’m giving you a chance to walk away with no strings attached. I will completely understand if you decide to do that.”

His response was, “Babe, I’m not going anywhere. You’re stuck with ME.”

It’s been six years since we had that conversation and while we have our ups and downs, there have been more perfect moments of enjoying each other than I care to admit.

About a month ago someone said to my fiancé, “Sophia is so lucky to have you. You are an incredible person for staying with her even through her diagnosis.”

My first thought when I heard that was, I used to believe that too. Then I thought, what!? After years of struggling with my diagnosis and relearning to love myself exactly as I am, I realized that the truth is we are so lucky to have each other. All the lovefest and sappiness aside, it’s true. WE are lucky to have EACH other.

Going blind is just a little speed bump on our road trip to our shared life together. It is not the definition of our relationship, but merely an element of it. Besides, Socrates doesn’t live up to his name as a philosopher and yet I chose to stay with him regardless.

We each come with baggage and we each come with personality. And yet, our union, our friendship, our love for one another, trumps all the small stuff like losing your vision.

My story doesn’t have a neat ending or a twist, reassuring the reader with a fairy tale conclusion that I am no longer going blind. Instead, going blind was exactly what I needed to realize that I am still perfect and found my perfect guy who is not anything less than my soulmate.

Testo originale su Usher Syndrome Society

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Nadia Luppi

Cara Sophia,
innanzitutto grazie. Condivisioni come la tua aprono in noi spazi che a volte difficilmente ci concediamo. Gli spazi della speranza, della fiducia, dell’Amore.
Mentre leggevo la tua testimonianza riflettevo e mi facevo alcune domande, che ora proverò a condividere con chi legge oltre che con te che hai scritto.
Racconti che – presa dallo sconforto – avresti lasciato andare il tuo Socrates, perchè temevi sarebbe stato troppo per lui.
Vorrei soffermarmi su questo, con la leggerezza di chi conosce la risposta splendida che hai ricevuto, ma anche con la consapevolezza di chi sa – perchè di storie ne abbiamo ascoltate tante e tutte diverse – che non è detto che vada sempre così “bene”.
Io da inguaribile romantica quale sono ho ripensato a quando quelle parole le ho sentite io, all’emozione grande che ho provato e sorridendo compiaciuta mi son detta una volta di più: “E’ l’amore che conta!”
Tuttavia sono certa che qualcuno – leggendo il tuo racconto – si è chiesto con una certa malinconia “Chissà se potrà mai succedere anche a me?”

Ma qual è il punto?

A mio parere il punto è la percezione che abbiamo di noi.
Mi spiego meglio, ricordando ancora una volta la legge dello specchio: ciò che accade fuori, è sempre un riverbero di quel che abbiamo dentro. E anche chi ci è accanto, è lì perchè siamo chiamati a cogliere un messaggio, un insegnamento, a farci una domanda. ORa, se è vero questo, la cosa più bella che possiamo fare è scoprirci e riscoprirci meravigliosi e unici per come siamo, nonostante tutto, o forse proprio per il tutto che siamo, disabilità compresa.

Perdere la vista, l’udito o la mobilità, è un trauma e dobbiamo riconoscerne prima di tutto la ferita. Da lì si parte per riconciliarsi e ritrovarsi, e il viaggio per stare bene non finisce mai.
La cultura della perfezione e dell’efficienza ad ogni costo non ci aiuta in questi passaggi. La retorica del disabile come persona con qualcosa in meno ci allontana dal nostro valore personale e ogni difficoltà che viviamo nel quotidiano rischia di distoglierci dalla nostra stessa luce.
Ma la sfida è proprio questa: restare centrati e darsi la possibilità. Di essere felici. Di essere amati.

Non a caso accenni ad un tuo percorso di “riconciliazione” e hai compreso bene che non è solo Socrates ad essere la tua fortuna, ma la fortuna è reciproca. Perchè dovrebbe essere diverso?
Prima di temere, prima di avere paura, prima di pretendere qualunque cosa, c’è la scelta di volersi bene e concedersi la possibilità di essere felici e di essere amati. E poi c’è la disponibilità a lasciarsi amare, e questo non è qualcosa che riguarda solo le persone con disabilità, ma tutti ìnoi.
Grazie Sophia!