Will You Still Love Me When I’m Loopy?

My family and I share a genetic predisposition to Alzheimer’s Disease.

By Gabrielle Sierra

My family has always made light of our genetic predisposition to Alzheimer’s Disease. Our jokes run the gamut from socially acceptable to completely inappropriate.

Sometimes we dabble in light ribbing in order to relieve tension, like when someone forgets a name or retells a story. “Get ready!” we will sing-song to our partners or family members or friends, alluding to some inexplicably hilarious distant future in which we have no memory at all.

Other times we skew darker, like when we laugh about that time my great-grandmother accidentally used Lestoil (a multi-purpose cleaner) to bake a large batch of cookies and my grandmother had to run around to all the neighbors and collect them. Or how in my grandmother’s later years she couldn’t tell any of her daughters or granddaughters apart so she called us all Barbara.

It sounds bleak, I know, and maybe a little cruel, and maybe we should think twice before taking this hit comedy routine on the road. But Alzheimer’s Disease has no cure, and most scientists believe that those who have a family member with the disease are at a higher risk of developing it. The risk level goes up even further when more than one person in your family has had the disease.

My grandmother had it, my great-grandmother had it and my great-uncle had it. The math isn’t promising.

Of course, I am not alone in having a family member (or three) suffer from this affliction, as Alzheimer’s is the most common form of dementia. A progressive disease, it affects the brain, and grows more and more destructive over time. Alzheimer’s is associated with memory loss, but the disease is much more overarching in its destruction, causing the sufferer to lose the ability to understand visual images or to make clear judgements or even complete simple daily tasks. Many Alzheimer’s patients experience sudden changes in their mood and can become fearful, anxious or even violent.

There are seven stages to Alzheimer’s, and the final stage is terminal. This may include the patient losing their ability to swallow. But unlike some diseases, this final stage isn’t always reached swiftly. My grandmother started showing signs of Alzheimer’s around the age of 75 and only just passed away last year at the age of 96. For nearly a decade her body was healthy and strong, so it was a struggle to understand that what was happening to her was all in her brain.

While Alzheimer’s has no cure, in some cases a test of the Apolipoprotein E gene can tell patients whether or not they have an increased risk. Many doctors encourage those who may be genetically predisposed to the disease to have these tests done, but with no way to slow or prevent the development of Alzheimer’s, many (like my mother and aunts), choose to skip the test in favor of a future that is uncertain but still optimistic.

A silver lining, though a muted one, is that my family members who suffered from Alzheimer’s succumbed to the late-onset variety. This is the more common form of the disease; less than 10 percent of Alzheimer’s sufferers develop the early-onset form. Late-onset means the disease doesn’t really start surfacing until the individual is in their mid-sixties or older, which sounds far better than beginning to lose your memory at age 30. But in this modern world, where the average lifespan for an American man is 76.5 and 82.1 for an American woman, this information can be of little comfort.

For a family of academics, voracious readers, and quick-witted banter-lovers, losing control of your senses, memories, and abilities can seem worse than death. It is incredibly difficult to see a bright flame slowly extinguished, and even harder to realize that, at least for a while, the individual knows what is happening to them.

As a family unit we remain hopeful that a cure or at least a treatment will be developed within our lifetimes; new drugs are being developed and new studies are being published all the time. My mother and aunts allowed researchers to learn from their mother’s decline and even donated her brain after she died. We participate in the annual Alzheimer’s walks and raise money for what we can.

But more often than not, we laugh. We ask those close to us, “will you still love me when I’m loopy?” with a light tone that carries a bit of fear. We take photographs, we tell stories, and we write things down. We read and read and read. We make jokes in the doctor’s office, we make jokes over dinner, and we make jokes on the phone. Even while gathered next to my grandmother’s bedside as she died, we laughed. We cried, we told stories, and we laughed.

We laugh because we are strong and funny and full of life, and maybe a little cruel. We intend to face the future with a grin.

 

Watching My Father Lose His Sight

For most of my life, books and my father went hand-in-hand. Then, about six years ago, he began losing his eyesight.

By Saira Khan

I was 13 years old when I first read something from my father’s book shelf. “Blasphemy,” by Tehmina Durrani, is a novel about the abuse and brutalization of Heer, a young Muslim woman, at the hands of her cleric husband, Pir Sain. At one point, Heer is forced into getting an abortion. It was my first literary encounter with abortion and Durrani’s words about Heer losing control over her body have stayed with me ever since.  She helped shape who I am and what I believe in.

I can’t remember a time when I didn’t see a book or a newspaper in my father’s hands. When I was a child, and we lived in New Jersey, his Sunday morning ritual included sitting on our stoop with a warm cup of chai to read The New York Times beginning to end. He encouraged me to read from his collection. Often, the books were about women: “A God of Small Things,” by Arundhati Roy, Benzair Bhutto’s biography, and Thomas Hardy’s “Tess of the D’urbervilles.” Books and my father went hand-in-hand. Then, about six years ago, he began losing his eyesight.

***

My father, Afzal, was born in the town of Lucknow, in India, in 1948, shortly after the partition. His family—including four siblings and two parentsrelocated to Karachi, Pakistan, when he was still a baby. His father (my grandfather) was a schoolteacher by passion and by trade. Literature was a big part of their lives. “It wasn’t just reading the books that we enjoyed. We needed to talk about them. We debated them all the time,” my father told me. This is a ritual he carried on with his own family. When I was younger, and still lived at home, conversations about what we read would ultimately lead to conversations and politics and religion. It wasn’t uncommon for us to be at the table for two hours.

Much of the literature my father consumed was from progressive Pakistani and Indian writers, from the prose of Saadat Hasan Manto to the poetry of Mirza Ghalib to the early feminist works of Ismat Chugtai and Qurratulain Hyder. “There’s one writer we talked about a lot at home,” my father told me about his adolescence. “Noon Meem Rashid, he was always a prickly subject. We’d have so many debates about him! It was great.”

“Before I ever considered moving to America, I found so much of the world in these books,” he told me. “There was a time when I was obsessed with Russian literature and poetry.  ‘And Quiet Flows the Don’ was one of my favorites. Which, by the way, I read in Urdu. That’s a lost art, reading in Urdu. No one does it anymore. That’s a story for another day, I suppose.” He always preferred reading in Urdu. “It’s my mothertongue, I understand it much better than I do English. And there’s a poetry in Urdu words that you just can’t find in English.”

When I asked my father if he actively chose feminist literature to stock his bookshelves with, after we were born, as a way of imparting wisdom on his three daughters, he laughed. “I couldn’t even fathom your existence when I first started these!” Literature opened a window into a world that he says people didn’t, and still don’t, talk about. “Take Chugtai, for example, she was writing about what life for women was like, socially and sexually. And Manto, he wrote about the rape of women and children during the Partition,” he said. “This is why it’s such a shame that you can’t read Urdu,” he said addressing me. “These books in English had an effect on you, imagine what Chugtai’s words could have done!”

“I guess you could say reading was a big, big part of my life,” he said. “I guess you could say I wouldn’t be who I am if I hadn’t read what I did.”

***

My father is an insulin-using diabetic. So I can’t say we were truly surprised when, in 2010, he started losing his vision: macular edema, the loss of sight due to a buildup of fluid in the retina, is a common complication stemming from the disease. He underwent cataract surgery to correct it, but it barely helped. “Apparently the surgery wasn’t a success. I don’t remember what exactly happened but my eyesight was still poor. ” Over the years, he has sought all forms of treatment: another surgery and various types of glasses. “Sometimes I’d think it was getting better but then my vision would just get progressively worse,” he said.

Since then, his vision has only gotten worse. By 2011, he could no longer read regular print books. When it became apparent that he would no longer be able to consume the words he wanted to, we turned to audiobooks. I got him Walter Isaacson’s book about Steve Jobs on tape. “There is no fun in it,” he told me back then and again when I asked him about it this week. “I like to see and read. What’s the point if someone else is putting the images in your head? I’d rather watch a movie.” But even that has become cumbersome. Much of the images he sees are blurry and disrupts the flow of the film or show. And while he never complains to us directly, when he asks one of us to explain what’s going on in the movie because “I can’t see it properly,” my heart aches for him. To lose such an important part of yourself, something we all take for granted, that has been there since many of us were born, must feel debilitating. But I don’t know how it effects my father  because he refuses to talk about it. Though  I’ve pressed him on it many times, he brushes it off as a natural part of growing old.

***

Before he started losing his sight, my father amassed a large book collection, the same collection I’d peruse as a teen. Bookshelves were always a staple in our home. These books had long and healthy lives. The ones in Urdu had been acquired in Pakistan in the 1960s and  travelled with him to Chicago, New York, New Jersey, and Maryland. During this time, the collection grew to include books in English. Geoffrey Chaucer. Khalil Gibran. Leo Tolstoy. And many more that I can’t recall. My parents moved back to Pakistan in 2014 and when I went to visit in early 2015, there was no book shelf to be found in their home. “We donated them to a mosque before we left,” my father told me. “What’s the point anymore of lugging them around from one corner of the world to another? They’re better off actually being read. There they’ll be cared for.”

A few days ago, while speaking with him for this story, I asked him if he misses his books, and more importantly, misses reading them. He told me all was not lost. “I can read some short news article on my laptop if I adjust the font enough. If it’s something short it doesn’t hurt my eyes,” he said. “Listen, this is just something I have to live with now,” he said when I asked more pointedly if he misses consuming  literature the way he knew how to. “I don’t miss it anymore. Not now. Not anymore. Now, I know I cannot read them, so I don’t even miss them.” I don’t know if he was trying to convince himself or me but I don’t think either of us believe him.