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Notes from a Boy @ The Window

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Notes from a Boy @ The Window

Tag Archives: Sickle Cell Anemia

Aside

RIP Sister, Sarai Adar Washington (February 9, 1983-July 11, 2010)

11 Saturday Jul 2015

Posted by decollins1969 in 1, Boy @ The Window, Carnegie Mellon University, Christianity, culture, Eclectic, Mount Vernon High School, Mount Vernon New York, Pop Culture, race, Work, Youth

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616, 616 East Lincoln Avenue, Brother-Sister Relationship, Death, Dread, Eri Washington, Father Figures, Growing Up, Independence, Life, Mazza Gallerie, Sarai Washington, Sickle Cell Anemia, The Matrix Revolutions (2003)


 

Sarai Washington, circa 2003.

Sarai Washington, circa 2009.

It’s been five years since I received my brother Eri’s call telling me what I had known and dreaded would come for nearly thirty years. That my only sister Sarai had died from complications stemming from sickle-cell anemia.

As soon as I picked up the phone five years ago, I knew. Sarai had been in and out the hospital for months since she had returned to New York at the tail end of ’09. Before then, she had lived either on her own or with two of her high school friends in Huntsville, Alabama since ’05. The skin and bone bruises, the constant blood transfusions, the always-there pain of sickled red blood cells circulating through her body. The average life expectancy for anyone with the disease is thirty-three years. That I had Sarai in my life for 82 percent of that life expectancy was still a minor miracle in the midst of what to me seemed completely unnecessary pain.

We weren’t as close in her later years, though. I mean, Sarai saw me as a bit of a father-figure when she was growing up. I had thirteen years and six weeks on her, so that’s how it goes. Between the 616 fire and homelessness for her and my other younger siblings in ’95, though — not to mention puberty — Sarai no longer treated me as her hero. That was fine by me. I already had too many people in my life who thought of me as some sort of hero or saint.

I think, though, that my sister enjoyed not really having to think about her future, about not feeling the need to grow up, since, what would be the point, really? I thought that because she knew more about her disease than anyone, it was her responsibility to grow up and find the best care possible to manage her disease, to bring some meaning to her life. That’s where our closeness became less so. I have a way of expecting more out of people than most people are willing to expect of themselves.

Sarai & Noah, November 2003. (Donald Earl Collins).

Sarai & Noah, November 2003. (Donald Earl Collins).

When Sarai came to live with me and my wife Angelia in ’03, to help us out with our then newborn son Noah, it was obvious that my sister was doing little to take care of herself. When I finally confronted her about her poor diet and unwillingness to watch over her disease, Sarai yelled, “You’re not my father!,” right in front of Mazza Gallerie, on the DC-Chevy Chase border (we had gone to see The Matrix Revolutions, much more for her than for me). Of course she was right. But of course, I was right also.

Sarai decided the next day to pack up her stuff and move back home to 616 and Mount Vernon, “where no one told her what to do,” she wrote as part of her going away letter. She also said that I “don’t know anything about the streets” as yet another familial “Just because you have a Ph.D…” coup de grace. I thought, “If I didn’t know anything about the streets, you and the rest of the younger siblings would’ve gotten your asses kicked through the early ’90s.”

But I knew Sarai’s letter wasn’t about the streets. It was about her living her life the way she wanted, without me or anyone else telling her how to take care of herself. That’s why she went away to Alabama for nearly four years.

Luckily I did get to talk to her a couple of times after that. Though we weren’t close, I loved her, and I know she loved me. The sad truth was, though, Sarai never had enough time to take charge over her life, and I couldn’t make her take that precious little time.

My Sister’s Death, Four Years Later

11 Friday Jul 2014

Posted by decollins1969 in 1, Boy @ The Window, culture, Mount Vernon High School, Mount Vernon New York, Pop Culture, race, Youth

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616, 616 East Lincoln Avenue, Commemoration, Dying, Living, Parenting, Sarai, Sarai Washington, Sickle Cell Anemia, Terminal Illness, What Could've Been


Sarai, Yonkers Apartment, Yonkers, NY, December 23, 1995. (Donald Earl Collins).

Sarai at 12, Yonkers Apartment, Yonkers, NY, December 23, 1995. (Donald Earl Collins).

My sister Sarai Adar Washington died on this date four years ago, Sunday morning, July 11, ’10. If she had lived, she would be 31 years, five months and two days today. I miss her, of course. I know she’s better off in the sweet by-and-by, that living with such a permanent, unyielding and relentless terminal disease like sickle-cell anemia wasn’t a real alternative in the intermediate run.

Screen shot 2014-07-11 at 9.45.51 AM

Still, I do wonder what life could’ve been like for Sarai if she hadn’t had to live with this dreadful genetic illness. Things like whether she had experienced the joys of sex and relationships, of falling in love and having a person with which to share her love and life. Or if Sarai would’ve gone on to college after high school, as there would’ve been a reason for her to do so, to keep living her life as fully as she could. Maybe, once she did decide to move out and live with a group of friends in Alabama, she would’ve stayed there working, dating, having the best of times on her own.

There’s really nothing more to say. Sarai’s gone, and though I wish we’d been closer in age and thus closer as brother and sister, and she’d been a healthy person, it was what it was. So, for one moment on this day, let me say, once again. Sarai, I love you, and miss you very much.

Sarai, 30 Years Old Today

09 Saturday Feb 2013

Posted by decollins1969 in 1, Boy @ The Window, culture, Eclectic, Hebrew-Israelite, Marriage, Mount Vernon New York, Pop Culture, race, Youth

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Tags

616, 616 East Lincoln Avenue, Child Abuse, Death, Forgiveness, Genetics, God, Hatred, Health Care, Ignorance, Mount Vernon Hospital, Neglect, Racial Stereotypes, Sarai, Sarai Washington, Sickle Cell Anemia, Stereotype Threat, Trait, Welfare


Sarai (with Maurice) at 12 years old, Yonkers, NY, November 21, 1995. (Donald Earl Collins).

My sister Sarai (with Maurice) at 12 years old, Yonkers, NY, November 21, 1995. (Donald Earl Collins).

It’s another February 9, more than two and a half years since my sister Sarai Washington passed away from complications due to sickle-cell anemia at the age of twenty-seven. Today would mark her thirtieth birthday. But given how Sarai’s life began, given her disease and the average life expectancy of people with it, it’s just as well that she isn’t here to become thirty. Sarai would likely be in pain, with skin bruises and lesions, laying on a hospital bed, in the middle of yet another blood transfusion.

My sister’s life and death is a constant reminder to forgive. It especially reminds me that forgiveness for us simple, linear humans is a constant process. It’s one in which we overcome our own feelings with the determination to love and to seek wisdom and grace. That Sarai had to endure sickle-cell anemia for twenty-seven years, five months and two days — or 10,015 total days — could feel me with enough anger so that I’d spend the rest of my life in hatred and contempt.

Not so much toward God. Even in eighth grade, I knew enough to know that people often cause their own calamities, and yet choose to blame God for the perditious decisions they made. No, there was a time I blamed my Mom, from the time I learned that she was pregnant with Sarai and for years afterward. Why? Because I also knew about sickle cell anemia, how it was a genetic disorder, and how two people with the trait had a one-in-four chance of passing on the full-blown disease to one of their progeny. And I knew this because my Mom explained the basics of it to me when I was eight years old!

My mother worked at Mount Vernon Hospital, where they very well could’ve run a genetic test for the disease at the prenatal stage. Of course, that would’ve given my mother a rather difficult decision to make about my eventual sister’s viability. But then again, she knew before the birth of my other siblings Maurice and Yiscoc that my now deceased idiot stepfather also possessed the sickle-cell trait. That she didn’t have any of them tested was, well, lazy and shameful.

I could’ve easily blamed my now dead ex-stepfather Maurice. He was a walking disaster area, as everything he touched turned into crap. Maurice never did anything in his life that didn’t hurt someone at some point. He never once cared enough about Sarai (or any of his other kids, for that matter) to make sure they were born healthy and whole. Forget about what happened to them after they were born. Maurice’s only real interest was telling guys standing on corners about his latest sperm injection. He also liked to buy cigars after the women had to endure the pregnancy and labor, abandoned by him in all meaningful respects in the process.

And there’s the grudge I’ve held against myself. As I’ve said in Boy @ The Window and in various blog posts (including “Pregnant Pauses” from November ’12), I never wanted Sarai here in the first place. Not because I hated kids or her. I knew what her birth would mean, especially after a year in which we were without food at 616 one-third of the time and three weeks’ behind on rent every single month. With my mother’s hours cut at Mount Vernon Hospital, we were on the verge of going on welfare, and I’d been taught by my mom to hate that. We were about to become a racial cliché, living and breathing racial stereotypes, and that went against everything my mother and nearly two years of living as a Hebrew-Israelite had taught me.

So how do I forgive? It’s simple, really (well, maybe not so simple). Forgiveness for me is a WWJD (What Would Jesus Do?) moment. Jesus said on the cross, just before he died, “Forgive them, for they do not know what they do.” I realize that even when we think we know what we’re doing, we don’t really know — we’re not omniscient, after all. We’re never fully aware of the effects of our decisions and actions, of all the intricacies and long-term implications.

That’s why and how I forgave and forgive — my mom, Maurice and myself. It’s the one thing I can honestly say I learned from Sarai, especially today, on her thirtieth birthday.

Sarai’s Death, One Year Later

11 Monday Jul 2011

Posted by decollins1969 in 1, Eclectic, Mount Vernon High School

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616, 616 East Lincoln Avenue, Death, Eulogy, Family, Funeral, Mount Vernon New York, Sarai Washington, Sickle Cell Anemia, What Could've Been


Sarai Washington, February 9, 1983-July 11, 2010

This was the eulogy I wrote for my sister Sarai’s funeral 360 days ago:

“On Sunday, July 11, 2010, Ms. Sarai Ador Washington passed away at the age of twenty-seven from complications from sickle-cell anemia. It was the battle of Sarai’s life from the moment she was born. Yet Sarai fought that battle with dignity and a sense that her life was worth living. For those of us who knew her, and knew her well, most of the time, Sarai lived as if her disease didn’t exist, or at least, didn’t matter.

Even in those first few months after Sarai was born, she 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 our mother put it. It was more like a few dozen in three spots on Sarai’s scalp. She always needed help. Sarai was in and out of the hospital, in need of the occasional blood transfusion, and at times in excruciating pain. Between the disease and the hardships what we were going through as a family during the early years of her life, it’s amazing to know that Sarai managed to survive in the worst of those worst times.

Despite all of this, Sarai managed to grow up and eventually find herself. She almost immediately gained a love of music, whether it was listening to her mother’s singing of hymnals or her older brother Donald’s horrible rendition of Michael Jackson’s “Man In The Mirror.” She sang in choirs with her brothers Maurice and Yiscoc while growing up. Sarai attended Mount Vernon’s public schools, where she made friends along the way. Though delayed by her bouts with sickle-cell anemia, she eventually graduated from Mount Vernon High School, in 2003.

Later that year she spent some in Silver Spring, Maryland helping to care for her nephew, Noah Collins before returning to Mount Vernon. In 2005 Sarai moved to Huntsville, Alabama to live on her own for the first time. In addition to working for Western Corporation as a customer care professional, Sarai found her voice, making a whole new group of friends, touching others lives in the process. Sarai’s wonderful sense of humor and sense of kindness were assets that her friends in New York and Alabama truly appreciated.

When her disease became more difficult to manage, Sarai moved back to Mount Vernon in the spring of 2009 to live with our mother. Though her illness had gotten worse, she still had dreams for the future. She was hoping to go back to school to earn a cosmetology license.

Sarai’s sickle-cell anemia complications got worse, so bad that she had no choice but to quit her job. Although Sarai in her final months was not always feeling her best, she still found the time and energy to spend with her nephew, Roshad Washington. Despite it all, Sarai lived her life her way. Along the way, she enriched the lives of her family and her many friends.”

There isn’t much that I’d change about what I wrote last July, other than the two or three minor grammatical errors that I didn’t catch because I was working on less than five consecutive hours of sleep per night. But I do wish that I’d been able to do more for Sarai while she was alive. I think about her almost every day, wishing that she’d stayed with me in Silver Spring long enough to look into Howard University Hospital’s work on sickle cell anemia.

Mostly, I think about how I wish the quality of Sarai’s twenty-seven years, four months and two days had been better, that her parents had been better, that my life could’ve somehow made her’s better. It just wasn’t to be.

Sarai, A Poet In My Heart

09 Wednesday Feb 2011

Posted by decollins1969 in 1, Boy @ The Window, Eclectic, eclectic music, music, Youth

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28th Birthday, 616, 616 East Lincoln Avenue, Brother-Sister Relationship, Coping With Death, Death, Fleetwood Mac, Mount Vernon New York, Muse, Sara, Sarah, Sarai, Sarai Washington, Sickle Cell Anemia, Sister, Starship


Sarai, circa 2009. Unknown.

Today, if she were still alive, my sister Sarai would’ve turned twenty-eight years old. To think that I was only six weeks past my thirteenth birthday when she was born. Sarai was the one sibling I didn’t want because she was born in the middle of our plunge into welfare, my ex-stepfather’s abuse, and my mother’s inability to make any good decisions for herself and for the family.

But her life was a miracle in and of itself. Sarai was born a sickly sickle-cell anemia child, another sign of my mother’s indecisiveness and the collective stupidity of adults in my life. None of that really mattered after the first few months, though. From the time she was six months old until I went off to the University of Pittsburgh four years later, I made a point of looking after her, of getting her extra food, of making sure that everything she ate was fortified with iron.

Sarai was my little princess, the only girl I could relate to, the one I could dress and attempt to comb hair for (I say “attempt” because she didn’t have much hair before she became a teenage and my hair-doing skills were mediocre most days). I didn’t want to love her, but I did anyway.

As she grew older, her status as my little baby changed too. But only in a few ways. Whenever I came home

Sarai, Yonkers Apartment, December 23, 1995. Donald Earl Collins

to 616 for the holidays or visits, Sarai would say “hi,” give me a hug, and hold out her right hand for some money. Sometimes I gave her some walking around money, other times I didn’t — I was a poor student for most of the ’90s. It took awhile, but the little girl who was my sister grew up enough to live on her own a few short years before she died. That’s part of how I’d like to remember Sarai.

The first song I ever sang to her outside of lullabies was Starship’s “Sara.” It was the winter of ’86, a quarter-century ago, and Sarai didn’t care too much for my rendition of the song, with my high-falsetto flourishes and adjustments of “Sara” to “Sarai” throughout. (By the way, for those of you who aren’t practicing religious Jews or Judeo-Christian scholars, Sarai was the name of Abram’s wife before God ordained that their names would become Sarah and Abraham.) Of course, I usually sang it to her when she became petulant or when she was teasing her older brothers.

But what I should’ve been singing to her was Fleetwood Mac’s “Sara.” I should’ve been singing “wait a minute baby, stay a little while…” It would’ve been so much more appropriate. Sarai was a “poet in my heart.” She never really changed, and luckily, she never stopped living her life. And now she’s gone, and has been gone for more than seven months now. My life seems more empty, my family even less of a family, than it was before. Hopefully, I’ll see her again, whenever I’m finally called home.

My Sister Sarai (Partial Repost)

13 Tuesday Jul 2010

Posted by decollins1969 in 1, Boy @ The Window, Eclectic, Marriage

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Boy @ The Window, Death, Mount Vernon New York, Sarai Washington, Sickle Cell Anemia


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.

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