Wednesday, April 21, 2010

Running With ScissorsSyringes?

A Possible Shadow In My D-Life Closet

I hope you'll pardon my not-so-great Photoshop skills. To understand this post, you'll need some background on my family (something I seldom write about, as I started this blog to write about diabetes research and the business of diabetes which provides plenty of content, not my personal life, but hey, I can write about anything I want!). I'll try to tell the story in an entertaining manner. I should note up-front that there IS a diabetes theme to this -- I promise!

Widows and Early Latchkey Kids

My maternal grandmother -- I'll avoid sharing surnames outright, but let's just say that if you ever watched the 1970's TV show "Eight is Enough" and you know the last name of that TV family, then you can figure her last name out pretty easily. Anyway, she was a pioneer of sorts. I adored my grandmother, without ever realizing that she pioneered the world of career women and single-parent families, paving the way for women in the late 1960's and 1970's to do the same thing en-masse. When I was growing up, I didn't really care -- how many grammar school kids really care about things like this? She was widowed in the early 1950's, and was effectively forced into becoming a working woman to support her family. This occurred in an era when life in America resembled the life of TV's June Cleaver of "Leave It To Beaver" far more than it did Ann Marie of "That Girl" or Mary Richards of "The Mary Tyler Moore Show" who came along in the late 1960's and early 1970's. At that time, there wasn't the same social acceptance of working women, nor did the local school system even attempt to be accommodating to working parents, so there were certainly challenges. My grandmother's career also impacted her children, who were among the earliest latchkey children, and each child was affected by the experience differently.

My mother is the youngest of three children. She has two older brothers, the oldest of whom she remained pretty close with in spite of him being older and having left for college, then joining the Peace Corps and another organization called IVS (International Volunteer Services) and working in Pakistan, India and Vietnam (he felt those were a superior alternative to joining the military and going to war in Vietnam to kill people) before ultimately moving from the East Coast to the Pacific Northwest (not far from Seattle, Washington, to be exact). He fits easily into the mold of what is viewed as the baby-boomer stereotype. Over the years, including the very summer I was diagnosed with type 1 diabetes, I have spent time at his place in Washington, so in spite of the distance, we've been pretty close.

On the other hand, my mother's other (younger) brother (I guess I can call him my uncle) fell in with a bad-boy crowd at a very young age, getting tattoos (before they became trendy among youth) and starting an addictive drinking habit at age 16 (even though the drinking age was 18 in the U.S. at the time, he was STILL underage) and also developed a pack-a-day smoking habit for Camels (without filters) long before that brand had been resurrected by RJ Reynolds in the 1990's, all while my grandmother was trying to bring home the bacon. My mother, as the only girl in the family, assumed some responsibilities of cooking and housework to help out. She later married and went on to have a family of her own (including me). Because of my bad-boy uncle's many issues, I have never been very close to my uncle.

My Bad-Boy Uncle

Anyway, the bad-boy uncle's life is the kind of story that is often parodied in television and movies, and he became the very definition of a redneck. While my Mom and other uncle suspect that he may have been dyslexic as well as had some form of ADHD (Attention-Deficit Hyperactivity Disorder) which lead him to quit school without a high-school diploma, he was never declared to have a learning disability, he was instead said to have "behavior problems", which apparently was quite common until the late 1960's. He was pretty abusive when he was drinking, and he even hit my mother a and uncle few times while under the influence, thus sewing the seeds for a relationship that was anything but close. He ultimately got a job with the Department of Sanitation in another town as a trashman, which paid reasonably well even if it was anything but an aspirational career path. His first of three marriages was to a woman -- let's just call her Elle (the names have have been changed) -- who was, to put it kindly, a tramp (I could hardly call her an aunt considering I barely considered her husband my uncle) as she was married to him for such a short time and I had only met woman the woman 3 or 4 times in my entire life.

Meet My Cousin "Augusten"

But Elle had already parented 2 children whom she had willingly discarded/abandoned (she handed custody of those children to their father, and luckily for them, he was a stable parent) before meeting my uncle. If I'm not mistaken, it was around 1972 when my bad-boy uncle and his first wife had a son (I'll call him "Augusten", which is not his real name, but I think you'll understand why in a paragraph ahead). Not surprisingly, their marriage ended a few short years later, and while the details on what exactly lead to the divorce were never disclosed, it's safe to conclude that my uncle's alcoholism, occasional visits to jail and various other brushes with the law no doubt played some role, but equally as important, I suspect Elle's unfaithfulness and other lovers just gave my uncle a convenient excuse to drink in the first place. Anyway, given my uncle's inability to care for himself, let alone my cousin, the State granted custody of my cousin to my uncle's first wife, Elle.

Elle also worked, and since it was the 1970's, working women were becoming increasingly more commonplace, and her career advanced quickly (it's unclear whether this was due to her skills, or her willingness to "give it all" to her career, often at the expense of her son, by working "after hours" so-to-speak, or some combination thereof). Then, in a move that really resembles what happened to Augusten Burroughs in his memoir "Running With Scissors" (or the movie by the same title which was based on the same title, which incidentally, was produced by Ryan Murphy, also the producer of "Nip/Tuck" and now "Glee"), Elle actually signed custody of my cousin who was maybe only seven or eight years old to a family she was paying to babysit him while she worked. How any parent could relenquish custody of their child to a complete stranger defies reason in my mind, but remember, this woman had already abandoned 2 children from a previous marriage, so this was merely a continuation of what was becoming a well-established pattern. The family legally changed his last name, which he later would have legally changed back once he was legally emancipated. It's really a mere coincidence that Augusten Burroughs lived in Western Massachusetts, while my cousin lived in Northwestern Connecticut -- both places are in New England in the Berkshire Mountains (in Connecticut, they're probably more like foothills, but I digress). But the similarities pretty much end there, as Augusten Burroughs would go on to receive a college education, and then go on to work for the advertising industry before becoming a well-known author, while it's unclear to me whether my cousin actually received a high-school diploma, much less go on to have a successful career.

My grandmother, before she passed away, frequently visited my cousin Augusten and was among the few semblances of family the poor kid ever knew -- both his mother and father had completely abandoned him. When I was young, we did visit my cousin in his newly-adopted family for an occasional birthday party, although the family who adopted him had as many kids as an orphanage, and in hindsight, I believe most were probably adopted to collect ADFC (Aid to Families With Depedent Children) payments. How much of those payments were actually allocated to the poor children they were supposed to benefit was unclear, but truthfully, my mother and family essentially lost touch with my cousin after that. He lived a good distance from where we lived, and my mother was busy raising her own children, and she did not need threats from an abusive and unstable brother whose everyday language consists to this day of every profanity known in the English language.

A few years later, my uncle remarried, and we even attended the wedding. It was a very strange occasion, as the reception was held in an Odd Fellows Hall which are sometimes described as being similar to the local VFW Halls which dot the country (not exactly the most high-brow event), and there was lots of country Western music at the reception, along with a wierd cast of attendees, and the parking lot was full of pickup trucks with Confederate flags (mind you, this was in Northwestern Connecticut, an area better known for genteel living, with large Colonial homes that have been snapped up by Manhattan execs looking for a country home in the state's bucolic Litchfield Hills, a few ski areas and pristine lakes, not to mention numerous wineries). My cousin lived in a place best known as home to Kimberly Clark's largest Northeastern U.S. manufacturing site -- where workers make Huggies diapers among other things, a town that's something of an anomaly in an otherwise very sparsely populated county -- hopefully that helps to paint some picure.

Suffice to say, my uncle's second wife, I'll call her Katie, was also from the wrong side of the tracks. Katie was an interesting character; she weighed significantly more than my uncle did (let's just say she was BIG girl), and apparently her brother was arrested for manslaughter (so that should tell you something about her upstanding family). But Katie was also a very tough woman who did not tolerate abusive behavior from my uncle, admitting that she had hit my uncle over the head with a cast-iron frying pan when he went after her in a drunken stupor, knocking him out cold, something that would happen on more than a few occasions. My cousin, to the best of my recollection, did not evern attend their wedding, since legally at least, he was then part of another, wierd family. I can only guess what ever became of his mother, but no doubt, she took good care of only herself, as if she didn't already have 3 children from at least two previous marriages already.

Post-Mortem: Augusten's Adult Life

Anyway, my cousin "Augusten" has not lived a good life by any stretch of the imagination. He had two parents who had completely abandoned him, and I would learn later that his adoptive family was abusive, both physically and mentally. I don't even know if Augusten got a high-school diploma, truthfully. Some years later, when he was old enough to figure out that he was entitled to contest his custody arrangement, and he would then locate his father, who had bought a home with his redneck wife and was living a more or less stable life, aside from his occasional run-ins with a cast-iron frying pan! My cousin Augusten, now in his teens, would move into my uncle's dysfunctional home until he was 18 or so, when my uncle caught him stealing the television, VCR, stereo, etc. As my uncle told it, which may very well be a complete lie, my cousin needed money for a gambling debt or for drugs, so my uncle, ever the understanding parent, kicked the kid out permanently, not that he'd done much of anything to support him over the years. To the best of my knowledge, he returned to his adoptive family for the remainder of his high-school years.

So, You're asking, that's somewhat interesting, but What the HELL does this colorful story have to do with diabetes, or anything else, for that matter?

Well, my cousin Augusten, eventually married and had a daughter (or fathered a daughter, and then later married). It was at that time when he began to try and piece together contacts with family, if for no other reason than to have some information to share with his own daughter. Eventually, he located my mother and reached out to her. My mother agreed to meet with him and tried to answer his questions about family, etc. including what had become of my grandmother -- she had moved to Washington, DC in the early 1980's after reconnecting with a college classmate whom she married shortly after. Unfortunately, she passed away a few years later at the age of 77. My mother also provided him with some photos, which I believe he really appreciated, and gave him directions to the cemetery in Boston where my grandmother is buried. At some point, my uncle from Washington was visiting, and he also met with my cousin Augesten, along with Augusten's daughter and wife. Augusten's daughter is a cute little girl, but my cousin Augesten had become obese and ultimately, was diagnosed with type 2 diabetes (the obesity, as recent research has revealed, does not cause type 2 diabetes, rather it protects the body from the impact of the calorie-dense diet that has become so commonplace in the U.S. today). That wouldn't be particularly noteworthy, as both my sister and I have lived successfully with type 1 diabetes for decades so it can certainly be dealt with, but we had the benefit of adequate medical care, appropriate diabetes and nutritional education, so we are examples of individuals who have thrived in spite of having diabetes. For too many people, healthcare is not even available, and for anyone who claims it is not a right, I would dare you to say that to the faces of people who are denied it. My cousin is an example of what can happen without that basic life necessity.

My cousin Augusten, unfortunately, did not have the same benefit of sufficient diabetes care that me and my sister had; while I may complain about my doctors growing up, at least I had ready access to them. Aside from a dysfunctional childhood, to the best of my knowledge, Augusten has never received any sort education on diabetes whatsoever. If I had to guess, I believe his family doctor may have told him he should loose some weight, and prescribed some type of oral meds without explaining much beyond taking the pills regularly, and that was the extent of his diabetes care and education. In the years that followed, Augusten quickly suffered the consequences of poorly-managed diabetes. He developed neuropathy in his feet and legs, which resulted in abscesses forming on one of his feet, which spread to a leg which ultimately had to be amputated. He now lives with a prosthetic. To top matters off, he has lost most of his vision on one eye, and has limited sight in the other, but these things have impeded his ability to find meaningful employment, with a physical disability and lack of much education has limited his ability to find anything.

Evidently, Augusten' wife recently threw him out, so it appears he's now living with my uncle and his THIRD wife. My uncle's third wife is a very kind woman who frankly deserves better than my uncle, but that's a separate story. My mother does not speak to her brother anymore, although she does speak with his wife, as she's lived in my hometown forever, and we've known the family for many years. My uncle, however, is in poor health and now has metastatic lung cancer (frankly, given his smoking habits, the big surprise was that it did not happen sooner), and if I had to speculate, I would guess his time on this earth is pretty limited. I cannot help but wonder what will become of my cousin if my uncle should pass away; he has no assets to speak of, no education and two major disabilities, plus my uncle's wife has no legal obligation to care for my cousin -- she's doing so mostly out of kindness (and for my uncle).

Although I am no way responsible for my cousin's life -- indeed, I hardly know the guy (most of what I know has been shared with me from my mother and the uncle I have always been close with), but I also feel somewhat guilty for being fortunate enough to have received adequte healthcare growing up which has enabled me to meet some amazing type 1 (and type 2) diabetes dynamos we have here in this fantastic, supportive diabetes blogging community, and have the ability to adequately care for myself. When someone does not have this, the horror stories become real.

I feel somewhat strange when I write or talk about my cousin, in part, because I really don't know him at all except what a crappy life he had growing up and how he's suffered not from diabetes specifically, but from a complete lack of information on how he can best protect himself from diabetes complications. It never ceases to amaze me how the U.S. healthcare system will readily remove one or more limbs, but will make it difficult (if not impossible) to get the basic care necessary in order to avoid them. Mind you: I had almost no part of my cousin's health issues, and I haven't even seen him since I was a child, and he has only half of my DNA. I did remember being told I couldn't eat his birthday cake when I was a kid and thinking it was a raw deal, only to see that as a good thing decades later. All I know is my mother was caring for me and my siblings (including my older sister with type 1) and she absolutely didn't want her brother to cause any problems so she pretty much avoided all contact with him.

Besides, there was really very little we could have done to help Augusten anyway. But today, my cousin has paid a terrible price due to a lack of knowledge on how to effectively manage his condition, which an afternoon or two with a good diabetes educator and or nutritionist could have helped prevent. I also don't think he gets much spousal support, as his wife told my uncle that she had sneaked a Big Mac into the hospital (he didn't like hospital food, but then again, who does?) for him after his amputation -- hardly what the doctor ordered. But I would caution my readers against blaming his wife -- realize that she was just trying to comfort her husband after traumatic surgery in the best (maybe the only) way she knew how -- this was well before she threw him out. Truthfully, his wife knew even less than Augusten does when it comes to diabetes, even though everyone can benefit from eating well, including their daughter. About the only thing I can say is that I hope that he will not suffer from further complications, and that he deserves to get appropriate care, not only for himself, but also his daughter. Whether healthcare "reform" has come in time for him is unclear, but I would hope his daughter has the benefit of adequate healthcare that he so obviously has never had the benefit of.

But it's NEVER too late to get adequate healthcare!


Abbey said...

That's some life your cousin lived. Although colorful, it was a bit sad. I don't know how he could've survived through it to begin with.

Sara said...

Wow. What a complicated story.

I think there is so much more than just getting everyone adequate health coverage. As long as insurance companies think it is financially easier to pay for a surgeon to cut off a leg than for an endocrinologist to get more than 8 minutes per patient, we are still not going to get too far.