Tag Archives: aplastic anemia

ideas, memories, musings

Going down the ever treacherous path called Memory Lane…

Fair warning… this is a stream of consciousness post that tackles many seemingly unrelated topics. Proceed with caution.

Bill is away again, so I’m left to my lonesome self. I usually teetotal when he goes away, but I had a beer when Bill made me lunch yesterday. Then I had another one last night while I watched The Boy in the Plastic Bubble on YouTube, starring John Travolta, Robert Reed, Ralph Bellamy, and Diana Hyland. I’ve seen that movie many times, and it’s always entertaining. Last night, it was strange to watch it, because I suddenly realized just how long ago I was born. I was about four years old when that TV movie aired in 1976. Now I’m 51, and all of the trappings of my childhood seem hopelessly antiquated.

It may seem strange that I’d be watching a 70s era TV movie, especially since I’ve seen it so many times. I love old shit like that, though. I’d rather watch campy crap from the 70s and 80s than most of what’s on TV today. I guess that means I’m really getting OLD.

The Boy in the Plastic Bubble actually has some personal meaning to me. I grew up during the era in which there were a couple of boys who lived in “plastic bubbles”. One was Ted DeVita, who had aplastic anemia and died in 1980. The other was David Vetter, who was born without a functioning immune system (he had a condition called SCID–Severe combined immunodeficiency).

David Vetter was less than a year older than I am, so he was one of my peers. He passed away in 1984, when he was just 12 years old. If he’d been born today, he never would have had to spend years in a bubble. Today, we have the technology to treat SCID with bone marrow transplants. Vetter himself had a transplant, but the bone marrow he received from his mother was infected with a dormant Epstein-Barr virus. It activated after it was transplanted and he wound up with a devastating form of lymphoma that killed him very quickly.

When I was in high school, I actually knew a guy who had aplastic anemia, like Ted DeVita did. I didn’t know him very well; he was a popular guy who played football, and football players weren’t interested in me. But everybody pretty much knew who Mike Haury was, back when we were in high school. To this day, he is memorialized at my high school. I believe there is a tree planted in his honor, as well as a weight room that was funded by people who wanted to memorialize him over 30 years ago. I found a new fundraiser online last night in Mike’s honor, by people who wanted to update the weight room at our high school, originally built in Mike Haury’s memory. In our day, the weight room at our high school was located in a boiler room. Mike’s death from aplastic anemia had led to the creation of a proper weight room. Too bad he never got to see it or enjoy it.

I remember Mike Haury went to the National Institutes of Health in Bethesda, Maryland, the same place where Ted DeVita spent most of his life. I remember Mike died on December 7, 1988, and I remember how his death was announced to us in school. You could have heard a pin drop. I wonder if Mike had to stay in a “plastic bubble” during the last weeks of his life. Mike’s cousin, Neil, was in my high school class. Neil left us in 2000… a victim of suicide.

Years later, December 7, 1988 would be significant to me for a different reason, when I moved to Armenia to serve as a Peace Corps Volunteer. That was the day a massive earthquake hit Armenia, destroyed buildings and infrastructure in a couple of northwestern cities, and ended 25,000-55,000 lives. About 130,000 people were injured. In 1995, when I arrived in Armenia, there was still a lot of wreckage and debris left from the earthquake. They hadn’t had the money or manpower to fix anything, what with the 1991 collapse of the Soviet Union, and all. It was still there in 1997, when I left Armenia to go home to the United States. I’m sure by now, things are different. I’ll find out in a few weeks, when I go back to Yerevan for a visit.

Today, Armenia has other problems, to include the struggle over Nagorno-Karabakh– an enclave known as the Republic of Artsakh by Armenian natives. This is a part of the Caucasus region that has historically been populated by ethnic Armenians. Back during Josef Stalin’s reign in the 1920s, as he was forming the Soviet Union, Stalin decided the land should be part of Azerbaijan. Things were, on the surface, peaceful during the Soviet years. But when the Soviet Union fell apart in December 1991, so did the surface peace in Artsakh. Armenians and Azeris have been fighting over the land ever since.

A few days ago, the Azeris seemingly “won” Artsakh, as Armenians agreed to stop fighting, and now hundreds of Armenians are fleeing Artsakh to the mainland. They fear ethnic cleansing, which is understandable, as Armenians have faced genocide in the past. As I was reading about this situation, it made me realize just how profound one man’s legacy can be. Not long ago, I read a book about a woman who fled Latvia, as it was becoming part of the Soviet Union. The woman’s story included a lot about Josef Stalin, and how his disastrous and cruel policies ruined and ended a lot of lives. I couldn’t help but think of that story as I read about how today’s Armenians are still affected by Stalin’s policies. I suspect we Americans will someday see Donald Trump in much the same way.

This situation actually affects me, in a weird way, not just because I used to live in Armenia and served as a Peace Corps Volunteer there, but because of my husband’s work today. He works for the US Army here in Wiesbaden, for a department that does work with countries in Europe and its environs, including Armenia. This situation with Azerbaijan– largely caused by Russia’s distraction with the war in Ukraine, and Vladimir Putin’s affinity for Azerbaijan’s current leader– affects Bill, because the US military is now working with the Armenians.

A few weeks ago, one of Bill’s colleagues actually talked to me for a couple of hours to get some perspective on Armenia and its people. When Bill told her about my experience in Armenia, she was quite excited, as she doesn’t know much about the place, and former Peace Corps Volunteers, especially those who were in Armenia in the 1990s, are in short supply in these parts.

As I sit here thinking about that, I realize how my time in Armenia and my marriage to Bill, both seem to have come about entirely by cosmic chance. I remember how I felt like I was wasting my time in Armenia back when I was there. Now, it seems like I was supposed to be there. And maybe I’m meant to be where I am today, here in Germany, doing exactly what I’m doing now. I’m sure it will fit in the long run. It always does.

Last night, as I was about to fall asleep, I started reading early blog posts on this incarnation of The Overeducated Housewife. The earliest posts on this blog were made when I was using a different blog layout, so some of the posts need to be edited. Some of the posts were also password protected and/or made private, because back in 2019, my privacy was being violated. That’s why I moved the blog in the first place. As I was reading those old posts, I was reminded of how totally mentally fried I was at the time, and how angry I was. In fact, just before I started writing today’s post, I read an old post of mine that inspired today’s…

The old post from 2019 is very profane, and also kind of funny, because I was legitimately VERY ANGRY. Some people might think my reasons for being so angry were petty. Maybe they were, in the grand scheme of things. I look at what Armenians from Artsakh are dealing with right now, and I realize that my issues with our ex landlady were not really that earth shattering. And yet, I remember feeling very frazzled and upset during that time, so much so, that I wrote this very profane, sarcastic, and frankly quite funny post in my blog. And that post led to today’s post, which has left me with some rather profound insights…

The main reason why I was so very angry on August 30, 2019 is because, yet again, I was being unfairly judged by someone who doesn’t even know me. Months after I left her hellhole rental house, ex landlady was in my head, mainly because we had decided to fight her legally, rather than letting her just take our money. Former landlady– fixated on her petty bullshit and hunger for money– determined that I’m some kind of worthless, filthy pig. She treated both Bill and me with extreme contempt over a couple thousand euros. She expected us to be perfect, which no one can be, while she blatantly did things that were illegal. She brazenly tried to steal from us, as she accused US of stealing and personally insulted us (especially me), to boot. I was PISSED, and determined not to let her get away with it.

Making matters worse is that, through her lawyer, she was making defamatory accusations against us the day before we would lose our beloved Zane forever. We spent what turned out to be his last full day alive answering her ridiculous false accusations and threats, when we should have been loving our beloved beagle family member, who meant so much more to us than she ever could. The reality of how we spent Zane’s last day made me even more determined to make sure she was forced to pay.

In the end, we didn’t let ex landlady get away with what she was doing. She did have to pay us. It wasn’t easy or painless, but she did pay. I was glad she paid, and it was definitely worth suing her, but we would have preferred not to have to go the route we did. Because, in spite of her erroneous perceptions, I AM NOT A BAD PERSON. I just want to be treated fairly and live my life in peace!

Quite often, when something like this comes up, Bill and I simply let the other person have their way. Fighting over money often isn’t worth the hassle. We are usually big fans of the “pick your battles” mindset. But, this particular fight was more about our self-respect, and being tired of being bullied, harassed, and abused by someone who feels entitled to act like a complete cunt, with no repercussions whatsoever. Sometimes, the answer to such behavior is a hearty “FUCK YOU!” And that is what ex landlady got. Now that I think about it, it’s probably what people in the future will get when they try to pull that kind of shit with us. Because most people get to a point at which they’re no longer to roll over for obvious bullshit, which is what this was.

Still… that bullshit is NOTHING compared to what a lot of people go through. Just reading this blog post and thinking about some of the folks I wrote about today makes me realize that we’ve been pretty lucky. We mostly have to deal with bullies and narcissists. Not that dealing with narcissists isn’t painful, because it is… But once you realize what and who narcissistic people are, you realize that they’re basically empty shells of pain. And, just like Dorothy in the Wizard of Oz, you always have the power to go “home” again… All you really have to do is click your heels and walk away. Sometimes it does feel good to give them something to remember you by, though… 😉

As you can see, when I’m alone, I do a lot of thinking. My thoughts often end up on a straight path, where one thing leads seamlessly to another. Before I know it, I have a long string of seemingly unrelated thoughts and memories that somehow fit, that I feel compelled to write about… much like my seemingly worthless and highly unorthodox existence seems to fit in implausible places. Here I am, an “overeducated housewife”, writing these blog posts when I could be doing something “useful”, like working in a cubicle somewhere, driving a teenaged kid to an activity, tending to an elderly parent, nursing an injury of my own, giving someone a baby shower, or attending a fundraiser… normal things all of my old friends seem to be doing.

Things I always thought I would be doing with MY life… But that isn’t how my life has gone.

A lot of people seem to think I’m a silly, amoral, feckless twat. I’m pretty sure that was former tenant’s and ex landlady’s collective impression of me. They didn’t know me. They never took the time to get to know me. They never cared, because they were not interested. That’s fair enough, I guess. I do wish if that was how they felt, they’d at least allowed me to be strange in private.

They didn’t realize there’s someone worth knowing, deep beneath the surface of my loud giggles, weird jokes, copious flab, and profanity… someone strong, who loves fiercely, feels deeply, thinks constantly, and deserves basic respect and simple regard. The people who casually dismiss me, or make a habit of dismissing anyone else, really, ignore those basic truths at their own perils.

Well… today’s post is a rambling toxic creek of different stuff. If you managed to wade through it, I do appreciate the effort. Like everyone else, I hurt sometimes. I have a very long memory, and a long history of people treating me like trash. I don’t have the type of personality that handles that kind of treatment with much grace or patience, hence these weird blog posts that some people think make me seem “unhinged”.

I’m not crazy, y’all. I think I’m just kind of fed up with everything. 😉 Being fed up means I have to empty the bins. Because I’m not an OCD nightmare like ex landlady, I don’t scrub away the shitty residue. When things start to stink, I have to flush. So that’s what today’s post is.

Time to move on with the day. Got to fold laundry, walk Noyzi, play guitar, and buy more beer. So, until the ‘morrow, I bid you all farewell.

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book reviews, healthcare

Repost: A review of The Empty Room: Understanding Sibling Loss by Elizabeth DeVita-Raeburn…

This book review was posted March 2, 2016. I read Elizabeth DeVita-Raeburn’s book about her brother, Ted, after writing a nostalgic post about David Vetter, the so-called “boy in the plastic bubble”. It appears here as/is.

Imagine watching your only sibling spend eight years kept in a room he could never leave.  Then, after those eight years have passed and your brother is on the brink of adulthood, he dies.  That’s what author Elizabeth DeVita-Raeburn witnessed when she was growing up. 

Elizabeth’s brother, Ted DeVita, had gotten very sick when he was just nine years old.  The son of an esteemed oncologist who worked at Bethesda’s National Institutes of Health (NIH), Ted was eating dinner when his father noticed huge bruises all over Ted’s body.  Because he was a cancer doctor, Dr. DeVita knew his son was very sick.  After six year old Elizabeth had gone to bed, Dr. and Mrs. DeVita took Ted to the hospital where they discovered that he had aplastic anemia.  It was September 6, 1972.  I was just a baby– not even three months old at the time.  Although Ted DeVita had the country’s best doctors and state of the art technology at his disposal, medical researchers still had a lot to learn about aplastic anemia.

Ted wasn’t immediately put into “The Room”, the laminar airflow room where he spent the last eight years of his short life.  His parents brought him home from the hospital on September 8, 1972.  Five days later, he was back… this time, to stay.  From age nine on, no one touched Ted without gloves.  He didn’t leave the room unless he was wearing a “spacesuit” that protected him from germs.  Everything in his room had to be sterilized, including his food. 

Ted DeVita was born in October 1962, completely normal.  He lived nine years of a relatively normal life.  Then, he was relegated to a sterile hospital room that he was not allowed to leave.  He was forced to endure IVs, endless pills, blood transfusions, bad hospital food, and never being able to touch anyone.  Ted DeVita was reportedly a very bright boy who would “put people through their paces”.  He was difficult to the professionals tasked with his care, yet eventually developed into a sensitive young man.  He was loved by most of the staff, other patients, and their families.  Unfortunately, because of who his father was, sometimes he was in the middle of political disputes within the hospital.  And, of course, because his situation was so extraordinary, sometimes the press invaded his privacy, too.

When Ted died in 1980, Elizabeth was just 14 years old.  Many people expressed how difficult his passing must have been for her parents.  Few people realized how hard the loss was for Elizabeth as Ted’s sister.  In her book, 2004’s The Empty Room: Understanding Sibling Loss, DeVita-Raeburn writes about what losing Ted was like for her.  She also interviewed many other people who lost siblings when they were very young and explores what that loss meant for them as they continued living.

I first learned about this book a few weeks ago, when I decided to blog about David Vetter, the Texas boy who was about my age and had lived in a plastic bubble.  I grew up hearing about Vetter in the news.  He was a year older than I was and had been in isolation since birth because he had a disease called SCID (severe combined immunodeficiency).  For some reason, I thought of him and did some research.  That’s when I read Ted DeVita’s story and learned about his sister’s book. 

Though I have three sisters who are alive and apparently well, I was interested in reading The Empty Room.  I kind of knew someone in high school who had aplastic anemia.  Unlike Ted, he died within weeks of his diagnosis, also when he was a patient at NIH.  Also, my academic background as a public health social worker makes me interested in these types of books.  And, of course, as a child of the 1970s and 80s, I had seen The Boy In The Plastic Bubble, an unauthorized made for TV movie starring Diana Hyland, Robert Reed, and John Travolta.  That movie was loosely based on Ted’s and David’s stories, though neither of the families were ever consulted about or consented to the making of the film.  Elizabeth DeVita-Raeburn’s comments about The Boy In The Plastic Bubble are also intriguing for those of us who have seen the film.

I wish DeVita-Raeburn had focused her book on her brother’s story.  On the other hand, after reading her book, I can see why she couldn’t do that.  Toward the end of the book, Elizabeth explains what it was like talking to her parents about her brother’s death.  It was extremely painful, especially for her mother.  As she interviewed her parents, Elizabeth learned the adult version of her brother’s story.  She also gained some insight into what her parents did to help her cope with Ted’s illness. 

Throughout the book, DeVita-Raeburn writes about how children who have lost a sibling learn to adjust.  Oftentimes, they are encouraged to forget about the lost sibling.  Sometimes they change aspects of themselves as if to reclaim some part of the lost brother or sister.  She writes about a sister who had been athletic before her brother’s death, but became even more so afterwards, as if she wanted to preserve that part of him.  She writes of another sister who had become a star student, almost as in tribute to her brother’s academic ability.

DeVita-Raeburn writes about the Kennedy family, which has been famously shrouded in tragedies as much as it has its dazzling politics.  Apparently, John F. Kennedy had not had political aspirations before his older brother, Joseph, died in a plane crash.  He had taken on his brother’s interest and went on to become our thirty-fifth president.  When JFK was assassinated, younger brother Bobby determined to make a run for the White House until he, too, was killed.  Youngest brother, Ted Kennedy, was also a politician.  He settled for being a senator.

I was fascinated by DeVita-Raeburn’s commentary on the Brandt twins, Raymond and Robert, who had been identical twins in a family with eleven children.  Their parents were German immigrants who were devout Lutherans. Robert and Raymond Brandt grew up in Ohio, dressed the same way, shared the same bed, and were always together.  When they were twenty years old, they took jobs working as linemen for the electric company.  Robert died in a freak accident and his brother was left to carry on.  DeVita-Raeburn met Mr. Brandt, who later started a support group for twins who had lost their twin sibling.  Her recounting of the Brandt brothers’ story is very compelling.  I wanted to find out more about the Brandt twins after reading about them in The Empty Room.

Apparently, a lot of women who have lost siblings, particularly if the sibling they lost was an only son, keep their maiden names when they marry.  I thought that was an interesting point, though nowadays, a lot of women keep their names anyway.  Personally, I was happy to take Bill’s name for many reasons, not the least of which it would mean no one would ever call me “genitalia” again.  If you know my real name, you may know why a few people called me that. 

Elizabeth DeVita-Raeburn’s book, The Empty Room, is beautifully written and well-researched.  I appreciated her personal insight and research into the phenomenon of sibling loss, especially since it was a topic that hit so close to home for her.  The only editing glitch I noticed was when she referred to her brother’s “spacesuit” as a “Nassau” suit.  I think she meant NASA.  I also liked that at the end of the book, she included a reading list for those who wanted to learn more about what it’s like to lose a sibling.

I think this book is excellent reading for anyone who has lost a sibling, especially if they were children when the death occurred.  Aside from that, it’s also a great read for people who are public health social workers by training… or really, just anyone who finds these kinds of books interesting.  I realize that some people may find this book’s subject matter depressing.  I, for one, think reading The Empty Room made me wiser.  It also made me grateful for medical researchers.  Nowadays, no one stays in laminar airflow rooms or plastic bubbles for years.  Thank God for that.

As an Amazon Associate, I get a small commission from Amazon from sales made through my site.

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healthcare, history, nostalgia

Repost: Remembering David Vetter, the boy in the plastic bubble…

This post originally appeared on January 31, 2016. I am reposting it as/is today because it accompanies a book review I will repost after this.

The 70s and 80s were an interesting time to grow up.  They don’t seem like they were that long ago to me, but now that I’ve reached middle age, I can say with honesty that they were.  One story that intrigued millions of people when I was growing up was the story of David Vetter. 

David Phillip Vetter was born on September 21, 1971, about the time my parents conceived me.  He was from Conroe, Texas, a suburb of Houston.  He had an older brother, David Joseph Vetter III, who died the year prior to his birth.  Both David and his brother had a genetic disease called SCID (severe combined immunodeficiency).  It meant that they were born without immune systems that could effectively fight off infections.  The slightest illness could be fatal to someone with SCID.

Because David had this disease at a time before there was a treatment for it, he was forced to spend all but two weeks of his life in a plastic bubble. I distinctly remember hearing and reading about David. I also remember the 1976 film John Travolta, Robert Reed, and Diana Hyland famously starred in called The Boy in The Plastic Bubble. I saw the movie many times when I was growing up. It was based on the real life story of Ted DeVita, a teenager who had severe aplastic anemia. Ted DeVita lived in a sterile hospital room for over eight years. DeVita’s and Vetter’s experiences were fascinating to people all over the world. DeVita died in 1980 of iron overload, caused by too many blood transfusions.

A preview of John Travolta’s movie loosely based on Ted DeVita’s case. At this writing, you can see the whole thing on YouTube.

I’m reminded of David’s story this morning.  There was a link to a New York Times retro report on my Facebook feed.  Though I hadn’t thought about David Vetter in a very long time, I quickly found myself recalling him as I watched the 12 minute video and read the accompanying article.   

Had he lived, David would be my age.  He had a bone marrow transplant that initially worked.  Unfortunately, the marrow had a dormant strain of the Epstein Barr virus in it.  The virus activated, and David ended up with a virulent cancer that overwhelmed his body.  He died on February 22, 1984.

On David’s grave, the epitaph reads “He never touched the world… but the world was touched by him.”  Even now, knowing that children with SCID are no longer kept in plastic bubbles, I can’t help but wonder what life would have been like for David, had he managed to become an adult.  Though he was able to accomplish a lot in his twelve years and provided science and medicine with new knowledge about a rare disease, there were so many things he couldn’t do.

A New York Times video about David Vetter.

NASA made David a space suit, which he wore a handful of times.  The suit allowed him to emerge from the bubble, though he remained tethered to it by an eight foot long cloth tube.  He never felt his mother’s kiss until he emerged from the bubble for the bone marrow transplant.  He never would have been able to have sex.  I even wonder if he ever saw a dentist… though, I guess if you live in a sterile environment, bacteria is not an issue.  Doctors worried what life would be like for David if he made it to teenhood or even adulthood.  Would he be able to tolerate life in the plastic bubble for an entire normal lifespan?

I am amazed by what David Vetter’s twelve years on Earth did for the advancement of science, ethics, and medicine.  I am also amazed at how old I am now.  It seems like yesterday, I was just a youngster.  I look at those photos and videos of David Vetter in his germ free environment, knowing that was state of the art medicine for the 1970s and 80s.  What happened to him then, would never work today. Nowadays, kids who are identified with SCID before they get sick are given bone marrow transplants.  In fact, in the video posted with the New York Times story, there is even a story about a woman whose son had SCID identified in utero.  He had a bone marrow transplant before he was even born.

When I was in high school, one of the most popular guys in the senior class developed aplastic anemia.  He ended up going to the National Institutes of Health in Bethesda, Maryland, where he died just weeks later.  The day Mike Haury died, was coincidentally also the day 55,000 Armenians died in a massive earthquake… December 7, 1988.  I have read that aplastic anemia is now much more successfully treated than it was in the 80s.  Again, it just doesn’t seem like it was that long ago.  I guess it was.

Edited to add: Although I know that COVID-19 life is nothing like it must have been for David Vetter, in a weird way, the constant focus on contagion and masking kind of reminds me of him. I’m looking forward to having the next vaccine.

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