Notes from a Boy @ The Window

Sarai & Noah, November 2003

Yesterday, my only sister Sarai passed away at twenty-seven from complications from sickle-cell anemia. It’s a disease that can often claim one’s life before they reach adulthood. Even with our advanced medicine, the average life expectancy of someone with sickle-cell anemia is forty-five years. Not to mention the pain and infections involved in having such a body-draining disease.

As much as I love her, the fact is that Sarai probably shouldn’t have been here. Between the disease and what we were going through as a family in ’82, it’s hard to believe that Sarai managed to survive in the worst of our worst times. I had just gone through my summer of abuse at the hands of her father, my mother had struggled through picket lines because she didn’t want to lose her job (only to get her hours cut in half anyway), and we were eating as if there was a global famine crisis. By the time I found out that my mother was pregnant with Sarai, with my mother working part-time, I knew we were up crap’s creek without a lifeline. My cold and adult-like argument with my mother about aborting my future sister left me even more in search of escape than I had been (see February 9, ’09 post “Sister Sarai”).

For some reason my mother didn’t listen to me, giving birth to my only sister, Sarai Adar Washington on the ninth of February ’83, born in the middle of a snowstorm. I refused to visit my mother in the hospital in New Rochelle. I didn’t want Sarai, and was tired of watching my mother make incredibly bad decisions.

Sarai came home a couple of days later, obviously stricken with the disease, as she looked like she was in pain then. I was so mad whenever I was home in Sarai’s first days. Not mad at her. Mad with my mother. Even at part-time, she could’ve seen a doctor about her sickle-cell trait, and screened to see if her idiot husband had the trait also.

Even in ’82, even without his participation, through my brothers Maurice and Yiscoc, my mother could’ve learned early on whether both her and my then stepfather Maurice had the sickle-cell trait. She long knew that she had it, and I’d known about my trait since I was seven. I’d learn about a year later, in ninth grade Biology with Mr. Graviano, that with two parents, there was a one-in-four-chance with every pregnancy that full-blown sickle-cell anemia would be passed to a child. For the first time in my life, I saw my mother as an idiot.

By the middle of the summer of ’83, Sarai was obviously in trouble. She hardly gained any weight, all of her food had to be fortified with iron, and she only had “three strands of hair,”as my mother put it. It was more like a few dozen in three spots on Sarai’s scalp. She always needed help. Sarai even then was in and out of the hospital, in need of the occasional blood transfusion, and at time in excruciating pain.

With all of this, my mother would say to me, “See, that why you shouldn’t wish for an abortion,” as if I was supposed to feel guilty about what I said to her the year before because Sarai was sick. As if I had anything to do with her being here. I just gave my mother a weak smile whenever she’d say something like that, trying not to reveal my disdain for her path-of-least-resistance decision-making.

Despite all of this, I grew to love my sister, if only because there was nothing else to do. It wasn’t her fault that her parents had about as much common sense as a wino on South Fulton Avenue in Mount Vernon on a hot day in August. Sarai wasn’t to blame for her own condition. And me suggesting that my mother get an abortion — it was obviously too late to get one by the time I yelled the idea at my mother — didn’t make Sarai one sickle-cell sicker than she already was.

Over the years, Sarai did get better, then worse, then better again. I stopped babying her by the time she was a teenager, but my mother didn’t know how to stop treating her like she was a toddler. By the time of the family intervention in ’02, Sarai was obviously ready to leave 616. She moved to Alabama for three and a half years, between ’05 and ’09, to live with her high school friends and to live a slower life away from my mother and the rest of us. Even though she still had many days with pain, and more in the hospital during those years, Sarai lived her life her way. I’m happy for her that she had those years away from 616, from Mount Vernon.

Of course, the story didn’t end there. Sarai’s sickle-cell anemia complications got worse, so bad that she ended up quitting her job and moving back to Mount Vernon from Alabama, where the medical facilities were allegedly better. The last week or two before her death, while far from pleasant, and somewhat expected, was still a shock to the family. For me, most of the shock occurred months before Sarai was born.

I only hope that someone somewhere finds a cure or at least a way to help people like my sister experience less pain and a richer, more vibrant life because of this disease. The good news was, that for most of her last years, Sarai carried on as if she didn’t have a disease.