This Tragic Love Story Will Have You In Tears





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Published on Sep 6, 2008

Everyone over a certain age fears that one day a momentous event outside one's control may occur that will change one's life forever. It happened to Alix Kates Shulman and her beloved husband when he fell from a sleeping loft, permanently injuring his brain. Her memoir, To Love What Is, explores life on the other side, with all its anxieties, risks--and surprising rewards.


My name is Alix Kates Shulman and my book is You Love What Is: A Marriage Transformed. It’s a memoir. On a moonless summer night my husband fell 9 feet from a sleeping loft to the floor and did not die. He can’t remember it and I, no matter how indelibly the details of that night are branded on my mind I still can’t fathom it.

We had just arrived at our summer house which is on an island off the coast of Maine in a very remote corner with no electricity, no road, nothing. We went immediately upstairs to our sleeping loft and fell into a profound sleep. Then, in the middle of the night, suddenly, I sensed something was wrong. I sat straight up in bed and I saw that the space beside me was empty. He wasn’t there. I looked down over the edge of the loft and there he was curled up like a fetus. I had that ominous feeling when I saw him there laying on the floor that nothing would ever be the same again. He had lost his short term memory from the day of the injury on, he remembers nothing. He had a frontal lobe injury which means his cognition was way off base. He knew his name and the date of his birth but he... although he knew my birthday, he didn’t know my name.

One of the speech therapist gave me an intonation of what was coming. She said that she thought that his ability to know that he was even in a hospital was because his memory was so damaged. He couldn’t hold in his mind, even for two seconds, any information at all. My calling was to bring him back to health. It was a long time. It was a year before I realized that, that wasn’t going to happen. It’s a huge undertaking. You have to completely responsive to them. You have to know what stage they’re in. You have to devote yourself. You have to be able to put your own, other desires on hold for them.

Many people suggested that I should get somebody else to care for him by putting him in a nursing home, or by hiring a full time caregiver for him. And just kinda forget about him and get on with my life. I can’t abandon him just because he has disabilities. He’s the same man I’ve always loved and he counts on me. He’s very appreciative. He thanks me a hundred times a day for what I do for him. And for sticking with him. He says, “Thank you for sticking with me even though I’m such a dumby”. Now that has to make me feel good.

When Scott had an aneurism while we were living in Hawaii, he had to have emergency heart surgery. And on the gurney on the way into the waiting room they let me see him for a moment and he looked up and me and he said “I want you to know one thing. You were truly loved”. That really moved me deeply and moves me still. Someone who says something like that to you and that you know is saying it truly you would never abandon no matter what happened.

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