I’m at the BlogHer ‘10 Conference in New York. One of the features of the conference is BlogHer’s Voices of the Year. BlogHer members submit posts in the months leading up to the conference, those posts are reviewed, finalists in various categories are chosen, and from those, a few of the authors get to read their respective posts in a tag-team style keynote presentation. It’s simple in concept, and showcases some of the best that the blogosphere has to offer, mostly from women bloggers, but a dude or two too because one of the beautiful things about these Voices is their variety.

One of this year’s Voices was Dr. Lissa Rankin, Obstetrician-Gynocologist, and “founder and guiding spirit” of Owning Pink, who shared her post, “What? We Can’t Say ‘Vagina?’” written in response to some hullaballoo over a tampon commercial that used the word, vagina. Apparently, vagina is not a word that can be used in association with tampon marketing, at least not on standard network television. In acquiescence to the networks, as Lissa relays, the advertisers changed the commercial, replacing “vagina” with “down there”. That was still too offensive, so the final version of the commercial about tampons made no mention of that unnamed place. After all that nonsense, the ad was squashed anyway because feminine product ads with frolicking girls in leotards or women riding horses in dresses stolen from beach brides is network-approved marketing at its finest.

Modigliani, Seated Nude 1916

I never thought I’d have occasion to make this confession here, but now is probably as good a time as any to disclose that I don’t care for the word, vagina, much like I’ve found a fair number of people squirm and grimace at the word, moist. I think it’s that V followed by a G sound, and it doesn’t help that the word, vagina, is reminiscent of the word, vulgar. Vagina certainly doesn’t roll off the tongue as well as penis… figuratively, of course. Regardless, whether you actually call it vagina, or something like hooha, or, well, there are an endless supply of alternatives that range from merely suggestive, to conversational staples of preschoolers, to truck driver-speak, the anatomically, technically, medically correct word is Vagina.

Despite my own aversion to the word, vagina, I whole-heartedly appreciated Lissa’s point that not naming it and pretending it doesn’t exist, is not a message anyone with a vested interest in the well-being of women and girls should endorse. I believe children are better served by learning the correct terms for whatever parts they have so they can clearly communicate with others if the need arises. I also think being comfortable saying it helps children feel comfortable with their bodies and who they are since having a penis or a vagina shapes identity. I’m sure the ingrained cultural negativity, as reflected by the fuss over saying, vagina, in that commercial, has contributed to my own dislike for the word. What can I say other than that I am a work in progress? How can people feel accepting of what makes a woman a woman if they have to tiptoe around the word that embodies the very essence of what sets women apart from their Y-chromosomed counterparts?

“Language is a key part of empowerment”, Lissa read to the BlogHer attendees gathered in the grand ballroom. Language is a key part of empowerment. I was immediately struck by this statement. Up until then, I had been with her, and I was totally on-board with where she was going, but it wasn’t the word, vagina, that rang in my ears in the moment after she made that statement. It was the word, diabetic, a word that somehow, sometime long after my pancreas had quit became inexplicably contentious, a word that instigates debate, a word that, as far as I’ve gathered, lots of people find oddly offensive.

Two weeks ago, I was on Facebook, and I caught a post by Dear Diabetes..: “This is a subject that will no doubt cause some passionate reponses, but I’m prepared to go there anyway. I’m putting it out there for the Dear Diabetes.. community: Are you “a person with type 1 diabetes” or a “diabetic”, and for parents with a CWD, what words do you teach your child(ren) to use to describe their condition?”

I read the responses, and there were a bunch of them so I won’t quote them all, but a few felt representative of what I find so bothersome about this issue. There was, “If you say she is ‘Diabetic’ then you are letting Diabetes define who she is.” A few comments later, there was also, “But saying he’s a diabetic limits him to that, and we all know our kids are not just that. He is diabetic not A Diabetic… He is [a kid] who happens to have diabetes.” Still further down the column of responses, I found, “I feel she is a child with diabetes not a diabetic that is not what defines her she is a child first a nurse at b.c childrens told me that best advice I ever got!!!”

I shook my head in dismay at that mystery nurse who obviously had good intentions, but in my opinion, did a disservice to that child. In contrast to posts like that, I was glad to see there were some respondents who took a neutral position, and some whose thoughts on the matter reflected my own: “I think this is such an absurd debate that didn’t exist for most of the 32 years I’ve been diabetic. Furthermore, I think by teaching kids that they aren’t diabetic, never mind the fact that it’s all semantics and that’s exactly what they are, people are giving them the implicit message that there’s something wrong with being diabetic. You have it, own it, live it… just like people should have, own and live everything that they are.”

I hate to be the one to break it to you, but if you have diabetes, you are a diabetic. I don’t see how identifying someone as a diabetic suddenly makes anything and everything else they are irrelevant, inconsequential, or invalid. What I do understand is that by playing games of linguistic keep-away, people who think there’s something wrong with calling a spade a spade, a vagina a vagina, or specifically, a diabetic a diabetic, are not empowering themselves to own their disease, or, in the case of a child, they are not empowering their child to own their diabetes. Whether those amongst us who are anti-diabetic realize it or not, they are infusing negativity into something that is part of each of us, something that makes us who we are, something that can motivate us, something that can enrich our lives, make us better people, open doors and share in friendships we probably wouldn’t have otherwise. I know it’s unfortunate that any of us have to live with diabetes, but by holding it at arm’s length, pretending it’s with us, but not part of us, makes it that much more difficult to accept it. Ironically, by not accepting it, not nurturing its integration into one’s identity, it will be limiting, and it will define one in ways that could undermine one’s health and overall well-being. Folding it into the mix that makes each of us who we are is a vital step towards folding it into our lives in a way that works, in a way that feels OK, in a way that allows us to feel good about ourselves, our whole selves.

Whether it’s called diabetes and makes you a diabetic, or it’s called purple-seamonkey-cabbage-pants and makes you a purple-seamonkey-cabbage-pantser, we will all open up ourselves to a world of love and acceptance by embracing it. For those who are not quite ready to embrace it, because I know we all have our own individual time lines for coming to some level of acceptance, at least take a step towards acceptance, and call it what it is, and call yourself what you are. By not giving it a name and claiming it, you are denying who and what you are.

My name is Lee Ann, I’m a diabetic, and yes, I also have a vagina.

I think there’s some kind of blogettiquette rule against apologizing for absences, but this is my blog so I can do what I want, and I feel compelled to do just that. I’m sorry, and I wish I had a good explanation for the spotty posts.

Starting January 11th, winter became a blur. My father’s funeral; reuniting with family, some I hadn’t seen in about two decades, some I hadn’t seen in five years, and some who fell somewhere in between; flying back and forth to Texas twice; driving back and forth to Texas once; emptying and selling my father’s house; selling his truck; enough trips to the county clerk and judge that eventually I stopped having to explain my insulin pump to the guards at the metal detector. There was also some snow shoveling to keep me occupied during my free time, and a fabulous birthday bash because I thought the universe owed me some happiness and fun.

The trips punctuated by mad laundry frenzies and half-assed attempts to feel settled before it was time to re-pack my suitcase and leave again are done. I’m home now. I’ve been home for a month. I’m still trying to tie up some loose ends regarding my father’s estate, and there have been some, uh, unexpected family issues that have left me a little, uh, paranoid and disoriented, but I’m back to work, and back to my usual routine… mostly.

I’ve always tried to blog from the heart about whatever was on my mind, but being honest and genuine about all things diabetes is not the same as being honest and genuine about everything that has usurped diabetes over the last few months. There are things I’d like to write about, and things I’ve written or started writing, and haven’t posted. I’ve deliberated about whether or not I should continue writing and posting as I’ve always tried to do, but instead of writing about the challenges of diabetes, I would write about my anger at my father for not just deserting me when he shot himself, but for deserting me in life. I’d write about how I came to a point in my early 30’s when I stopped trying to get him to be engaged in my life, how incredibly liberating that was, and how I must now reconcile that decision because it doesn’t feel so liberating anymore. Maybe I’d explain all the sordid details, from my unplanned, unwelcome conception, to how it burdens me that I feel like a painful reminder to others of how and why my father is gone.

It leaves me not knowing what to write, going days without even looking at my blog because I feel that self-generated pressure to come up with something. I feel out of touch with you, which I know is partially my own doing for trying to mitigate my exposure to what’s felt to me like a tsunami of baby talk, but is also on me because I’m here without really being here. I hate seeing the precipitous plummet of my site stats, and I hate knowing I’ve posted as often in each of these last months as I’ve posted during entire weeks in times past. I liked when I posted more regularly, I miss that element of my routine, I long to return to that because it reminds me of the time before I stared into my father’s casket, wanting to touch his hand, but knowing it would be cold and stiff, before the time when I picked out a verse to have engraved on his headstone. I want to be that person for you again because I feel like no one really wants to read my incessant blabbering about my father’s death anymore. I want to be that person for me because I liked that person more.

Much like I’ve seen other bloggers struggle with this issue of changing content as a reflection of a changing life, I’ve not known how to adjust my blog content to reflect all that’s transpired and all that drifts in and out of my mind day after day. With a few exceptions, I’ve not been focused on much that would be of interest to the DOC. There’s a part of me that wants nothing more than to unload all of it here as I’ve done with so many other problems, issues and concerns I’ve experienced over the last couple of years. Then there’s the part of me that feels like there’s too much personal family business that I shouldn’t share here, and if I tried to condense it into some abbreviated, censored version, not only would it feel disingenuous to me, but it would feel disingenuous to you.

I’m left trying to figure out what my blog is about. My intention when I created it was to have a blog about diabetes, with an emphasis on mental health and art therapy. Mostly that’s what it’s been, but now that I sit thinking about it, maybe it’s just a blog about me. If that’s the case though, where do I make my mark in the sand between what to write and what not to write? How do I simultaneously stay true to myself, true to you, true to my family, true to my career, and true to the blog into which I’ve poured more blood, sweat and tears than I ever imagined?

Every time I learn that another friend is about to start a family, I tend to pull away. Call it selfish, call it insensitive, call it what you will, but I call it preparation for the inevitable and self-protection. When it’s been people I know in real life, it equates to less time spent with them. When it’s been people I know remotely, staying in touch via Facebook or similar means, it’s equated to less visits to their profile, fewer wall posts, less interaction. Then it seemed to become the theme of the DOC, and I didn’t know what to do. There’s been a lot of baby talk in the D-blogosphere for quite a while, and this post is my response to that. You might not need to read it, and if that’s the case, I hope you won’t, but please understand, I felt like I needed to write about it.

When I was a kid, having babies seemed like a given, an inevitable fact for everyone except a few random souls who either couldn’t conceive for medical reasons or stumbled into unfortunate life circumstances that precluded conception. From what I had gathered by observing people, reading books, and watching TV and movies, parenthood was inherently joyful, the ultimate life accomplishment. I understood that there was an element of choice involved, but it never really occurred to me that people would purposefully choose not to become parents.

I first thought that perhaps I should skip the whole motherhood thing when I was about 20 years old, a sophomore in college. I don’t remember what precipitated this revelation, whether it’s something I’d heard or seen. Maybe it was a sign of maturity that I could self-reflect on the circumstances of my life and have such an insight. I’d been treated for depression for about 5 years by that point, and my eating disorder had gotten worse with no end in sight. It seemed glaringly obvious that I had absolutely no business procreating since I clearly couldn’t even take care of myself.

Knowing that it would be at least several years before I might potentially be at a place in my life when I would want to reconsider having children, I decided to scrap birth control pills in favor of Norplant, the implantable birth control that lasted 5 years. I. Loved. It. I went to the doctor’s office, they inserted it under the skin on my arm, and for 5 years I didn’t have to worry about getting accidentally pregnant. Until Norplant, I was neurotically paranoid about getting pregnant, occasionally buying home pregnancy tests despite having absolutely no concrete evidence that I might even be pregnant.

When I was 25 and Norplant #1 expired, I signed up for Norplant #2 because I still wasn’t ready to have kids. My boyfriend at that time and I were living together and barely scraping by financially, and I was preparing to go to grad school, so between life circumstances and continued ambivalence about having children, another 5 years of foolproof birth control seemed like a sound decision. I figured by the time the second one expired, I’d be 30, and I could revisit the issue of whether or not my life was conducive to making a baby assuming I’d had a change of heart about poopy diapers and spit-up. Although I was fairly certain I didn’t want to have kids, I wasn’t ready to definitively say “never ever”. After all, people change, maybe life circumstances would reveal themselves to be perfect for making a little Lee Lee.

Of course, there was a lot more to consider than whether or not I’d found a man with whom I wanted to share the rest of my life, or I’d finished school and started a career, or was financially stable enough to raise a family. There was the diabetes. When I was about 24 years old, it seemed my diabetes which I’d mismanaged for 10 years had started to catch up with me when the endo put me on blood pressure pills to protect my kidneys. Being on “old people” medication certainly poked a hole in my inflated sense of invulnerability. Soon thereafter, the ophthalmologist started doing laser treatments to protect my retinas from ever-increasing and worrisome microvascular changes. Despite the treatments, I still developed a hemorrhage in my right eye and needed a vitrectomy that very nicely reversed what would otherwise have left me blind in that eye, but served as a reminder that my body wasn’t taking too kindly to the way I had been treating it.

That my eyes were affected was difficult, but not completely out of the clear blue considering my lack of dedication to diabetes care. It was a most unexpected complication that left me feeling truly defeated by diabetes. At 27, I found a lump in my right breast that went from pea-sized in July to plum-sized in November. The surgeon, who was considerably concerned that it was cancerous, talked to me about removing the lump, and wanted to know if I had any concerns about being able to produce milk in the future because the surgery would compromise the internal structure of my breast. I told him to do whatever had to be done and not worry about whether or not I’d be able to breastfeed when it was all said and done since I was still about 90% sure baby-making wasn’t for me. A week or so after the surgery, the pathologist’s report came back with a diagnosis of sclerosing lymphocytic lobulitis, also known as diabetic mastopathy. Thankfully, it wasn’t cancer, but the cosmos was rightfully punishing me for being more concerned about my weight than my BG’s. Three months later, I found a lump in the other breast. Another lumpectomy later and diabetes had officially left me with permanently diseased breasts. No part of my body was safe apparently.

During those years, the list of prescriptions I took became increasingly lengthier. In addition to the blood pressure meds, there were cholesterol meds, heart meds for the autonomic neuropathy, a diuretic to shrink my marshmallow ankles that swelled because my kidneys weren’t quite what they used to be. It seemed like having a baby would be tempting fate, asking to have thus far minor problems escalate into major problems, the kind that lead to disability or even death.

There was also the matter of the depression. Whether or not my antidepressant would be safe to take during pregnancy, I don’t know, but not taking medication had consistently proven to be a bad idea for me. Beyond that issue was the question of how pregnancy-induced emotions and hormones could potentially worsen my depression. Ultimately, that seemed like an unknown risk that I wasn’t anxious to take, and further weighted the scale in favor of not attempting pregnancy.

With depression and diabetes come obvious hereditary risks. I questioned what I would do and how I would cope with the increased possibility that I could end up with a diabetic and/or depressed kid. My experience with both has been pretty hellish, and the possibility of contributing to that in my children was hardly a selling point for parenthood. I’ve seen the discussions, so no need to tell me that the risks are low. I’ve also seen diabetic parents randomly checking their children’s BG’s, obsessing when they seem unusually thirsty, expressing fears that the past would repeat itself in the next generation. I can understand why they’d react that way because I think I too would constantly worry that my kids might develop diabetes, and I didn’t want to live with that hanging over my head. It wasn’t a risk I was comfortable taking because I know I wouldn’t be able to live with myself if the worst of the what-ifs came to fruition. Mind you, I’m willing to entertain the possibility that there’s probably plenty of awesome in my genetic material, but I believed there couldn’t possibly be enough to outweigh the potential fail.

That brings up the risks of pregnancy to both me and a baby. There are all kinds of diabetes things that can blow up in one’s face during pregnancy. Besides the chore of trying to manage BG’s which is a constant battle on any given day for everyone with diabetes and obviously that much more difficult with a baby on board, there was preeclampsia, retinal issues, and kidney issues to consider. I also had what I thought to be valid concerns about miscarriages, dead fetuses, still births, premature babies, and any and every conceivable kind of internal and external deformity and abnormality. Then there was the prospect of losing my own life in the process of trying to create a life which led to thoughts of leaving a husband to raise a baby that essentially killed his wife. While the risks might be low compared to the probability of having a normal, healthy baby, I figured the risks were inherently greater for a woman with type 1 than the average healthy woman, and that totally freaked me out. I was clearly coming up way short on the pro side of my pros and cons list.

Additionally, I felt legitimately worried about how my diabetes would affect a child, regardless of whether or not that child ever developed any health or mental health issues. Kids whose parents have serious medical problems have a strike against them. Diabetes is a family disease as I always say, and it’s a burden for a child to have to learn to cope with a parent’s illness. Short term, I worried about a child being embarrassed about having a diseased mom. I worried about a kid being in a caretaker position, having to get me juice, fetch a meter, check my BG and understand the readings, or heaven forbid, call 911. I worried about a child’s needs becoming secondary to my medical needs, a hungry baby or an over-curious toddler colliding with a paralyzing low BG. Then there were the longer term issues of whether or not my health would remain stable long enough to parent a child until they could be self-sufficient, whether or not I’d live to see them graduate from elementary school, let alone high school or college, or see them get married or meet my grandchildren. I know no one who has children, health problems or not, is ever guaranteed those things, but let’s be real, people. Having diabetes, increases the risks that those expectations people who start families have won’t necessarily be met, and I feared the emotional toll that could take on a child. Is it paranoid, overly cautious, worst-case-scenario thinking? You might think so, but to me it was the reality of the circumstances that had to be considered.

At 29, I met Jason, and from the start, I made it clear that I was reasonably certain I wouldn’t have children of my own, and if I did decide I wanted to raise kids, I’d be more inclined to adopt. During the couple of years I’d been dating leading up to meeting him, I’d discovered how much it sucked to meet a guy I liked, and then discover on the 2nd or 3rd date how much they wanted kids. Once I figured out what a deal-breaker that was, I was totally upfront about it. Obviously, Jason was fine with that. When we’d discuss it, he’d essentially tell me his con list was also much longer than his pro list, and while he conceded curiosity about what it would be like to father a child, he wasn’t curious enough to be willing to relinquish his freedom. We both seemed to be at the same place on the issue even though we’d arrived via different routes.

Norplant (from: http://www.healthsquare.com/fgwh/wh1ch21.htm)

About a year into our relationship, it was time for Norplant #2 to expire. Having done my research, I had learned that Norplant had been taken off the market. Extraordinarily displeased that my birth control of choice was no longer an option, I studied the choices that were available. Condoms weren’t an option for countless reasons. The pill had been OK, but when I’d used that, I was never good about taking it at the exact same time every day, and during times when my love life was, well, less loving, I’d been known to take 4 or 5 days worth of pills all at once when I remembered I’d forgotten to take them. Granted, I’d been quite a bit younger, but still, I’d been spoiled by Norplant which did its thing without any action on my part.

Since I was in a quandary about what to do, I thought maybe it was a sign that I needed to finally commit to either becoming a mother in the future or foregoing parenthood altogether. Maybe it was time to get my tubes tied and be done with it. In search of answers, I went to a neonatologist who specialized in high-risk pregnancies just to find out what I might be getting myself into if I opted to bear children. They weighed me, took my blood pressure, collected my history, and told me about the risks. He talked a lot about big babies, little babies, preeclampsia and extended bed rest, but felt confident that despite my diabetes history, I could successfully deliver a healthy baby. The doctor was an older man, and was clearly operating under the assumption that I was definitely planning to get pregnant, even handing me a prescription for neonatal vitamins with instructions to start taking them some length of time prior to when I wanted to officially start trying to get pregnant. I took the script, and left feeling torn. Part of me didn’t trust him. Of course he was going to tell me he could help me carry a bundle of joy home since that was his job. Part of me wanted to believe him, figuring he’d been doing this long enough that he must know what he’s doing. All of me thought it still sounded like a lot of work with no guarantees of a happy ending.

Still feeling like I wanted to keep the option open, just in case, I decided to try the Depo-Provera shots. Well, I hated Depo-Provera. The glorious benefit of no periods on Norplant were replaced with incessant periods on Depo-Provera. I also hated that I had to pay a co-pay just to have them give me the shot at the office every 3 months, on top of the co-pay of the injection. Once, I tried to give the shot to myself, but that big-ass needle towers over a little insulin needle, and giving an intramuscular injection is a whole different experience than a little subcutaneous shot. I nearly passed out trying to give myself Depo-Provera, and then I was paranoid for 3 months that I hadn’t done it correctly, and would end up with an unplanned pregnancy. I had to find an alternative.

The options were sparse though. When I chatted with the doctor about just going back on the pill, I was 31 years old and Jason and I had been married less than a year. She and my endo decided the cardiac risks of taking the pill as a type 1 diabetic woman in my 30’s were too high. No pill, I was done with Depo-Provera, and the other miscellaneous choices didn’t suit me either. Jason and I weren’t ready to have kids, and neither of us thought that was likely to change, but we agreed that if it did, there was always adoption. My body simply didn’t need the wear and tear of supporting another life.

I decided to get my tubes tied. Although I didn’t ever really feel 100% committed to not having a baby, I certainly wasn’t even 25% committed to having one which meant I had no business doing so. I knew if I was going to have one naturally, it needed to be sooner rather than later because the longer I waited, the less likely there would be a favorable outcome. However, if we were ever going to be ready, it was going to be far enough into the future that there was no sense in doing it the old-fashioned oh-I-know-what-you-were-doing-9-months-ago way.

It’s been 5 years since my tubes were tied, and not much has changed for us. I believe it was the right choice for me considering all the circumstances, and since it’s the choice I made, it’s the one I have to accept. Like any major life decision though, there are lingering doubts, times when I wonder if I chose wisely when I came to the fork in the road. Sometimes I get the what-ifs. What if I had gotten pregnant, what would that have been like, what if we had a kid, what would he or she be like, what would a mutant Jason-Lee Ann even look like, what kind of parents would we be, how would our lives be different or better or worse? The questions are as asinine as asking what my life would be like if I didn’t have diabetes though. There are no answers, only postulations that can’t be verified either way, and sadness because there is a sense of loss. Maybe it would have been spectacular and I missed something great. On the other hand, maybe it would have been awful, and I’d be dead or I’d be forever mourning the death of a baby who never grew up or I never even met. That’s not a heartbreak I ever want to know.

Lots of people take the leap of faith and jump into parenthood, or tread cautiously and thoughtfully, regardless of health issues, financial concerns, or other life circumstances that are worthy of consideration. I’m in the minority though since I’m not one of them. I’ve surrounded myself with friends who can go out on a school night or at the last minute or until 2AM, who aren’t reliant on childcare or babysitters, who enjoy being aunts and uncles, who appreciate the joys of “parenting” pets. I’m at a point where I don’t know what I’d do without them because I consistently experience it as a loss when a friend outside of my childfree friends group becomes a parent, and the older I get, the longer the list of friends I lose to parenthood grows. Not that I’m not friends with them, but obviously, having a child is a life altering experience, and it drastically changes people’s priorities, interests, and schedules. Not that I can’t be friends with parents and parents can’t be friends with me, but it changes once they move onto that phase of life, and there’s what feels to me like an irreconcilable disconnect. Their lives are filled with new experiences, new people, new responsibilities, lots of newness, but I’m pretty much the same old boring gal I was last week, last year, years ago.

In the end, I have to feel good about what my life is, what I’ve made of it, and who I am because what’s the alternative? It’s hard to be reminded that I opted out of parenthood, regardless of whether or not I had perfectly valid reasons, regardless of whether or not it really was the best choice. You can’t choose to be a parent, decide it wasn’t a good choice, and undo it, so I stayed with what’s safe and familiar to me based on what evidence I had. Maybe I’m just a horrible, selfish person for discussing this in light of events with which I have to cope if I’m going to actively participate in the DOC, but why should I stay silent when my emotions are in a tailspin? I’m happy to see my friends are happy, achieving their goals, building their lives to their specifications, but sorry, I’m having a hard time with it. The perpetual reminders of look-what-you-could-have-had can sting. Am I allowed to be sad that I didn’t better manage my diabetes when I was younger so I could have felt I had more options? Am I allowed to be sad that I didn’t have life experiences that might have molded me into “parenting material”? Am I allowed to openly talk about it and express it, or do I have to zip my lips, or lock my keyboard? Am I stuck tip-toeing around the DOC, limiting my participation because the over-exposure is eating at me, not sure in whom I can confide, feeling isolated and burdened with guilt, ashamed of the way I feel?

Whether or not being childfree was the absolute best choice for me, I’ll never know because I have no point of comparison. It’s the choice I made, so I try to make the best of it, and actually, I think I’ve done pretty well with that. I don’t deal well with the reminders that there was another option that I forfeited though, so frankly, I don’t like to be reminded. I’ll tell you, I’ve loathed myself for feeling like this. I want to feel less conflicted as I watch my friends reach such a unique milestone. I like knowing my friends are happy, and I wouldn’t want anything less for them. Mostly, I’m sad though. I’m sad that I feel like I can’t relate to their lives anymore. Their lives will be much different, and if I’ve learned nothing over the last 5 years or so watching one girlfriend after another having babies, I’m sad that it will affect those friendships. I’m sad that their lives are filled with new meaning and purpose, and by default, my life might lack meaning and purpose, and I’m sad because I have lingering doubts that whatever meaning and purpose I’ve assigned to my life really does pale in comparison.

* Just a reminder that I’m donating money to two of my favorite diabetes organizations, Behavioral Diabetes Institute for every comment I receive this month, and Diabetes Hands Foundation for every click I get on November 14th, World Diabetes Day.

Kelly posted earlier today about her mission to get her medical records from Children’s Hospital of Philadelphia in order to get her Joslin certificate, and it reminded me that I’ve been wanting to post about some of my old records I received recently as part of my own quest to fill in the gaps of what I remember from life with diabetes many years ago.

I was initially frustrated that I couldn’t get records from the small community hospital to which I was admitted at diagnosis. In lieu of actual chart documentation with lab results and real information, I had hoped to get verification that I was there, along with maybe a diagnosis, but they couldn’t even verify that I had been there. That was a real punch-in-the-gut, and kind of still is, but there’s nothing to be done about it.

Time Capsule Via USPS

Since that was a brick wall, I had to get creative, which luckily, isn’t beyond my range of abilities. I contacted Camp Sweeney, requesting whatever records they might have, and I received those a few weeks ago, which I shared with you. While I was waiting to see what they might send though, I had the brainstorm to track down records from the University of Texas Medical Branch in Galveston, Texas. This is where I had been a patient of Dr. Luther Travis, the first endocrinologist I saw, and the last doctor to treat my diabetes before my mom got a job transfer and we moved from Houston to Philadelphia in the spring of 1985. Dr. Travis was author of the children’s book about diabetes that all campers received at Camp Sweeney every summer. I used to have several copies, and now I don’t have any which makes me sad. I’ve tried to track down a copy, but haven’t had any luck. As usual, my propensity to discard anything and everything diabetes-related from my life when I was younger has thwarted me yet again.

I went to the UTMB website to see what I needed to do to get records. I called, they faxed me the document I needed to complete, and I faxed that document back. Then I waited. A couple of weeks later, I received a fat envelope in the mail. It was clearly not a letter telling me I didn’t exist. I nervously opened it, knowing that it held the contents I wanted, but wondering just what kind of information I would find. Reading the first page, the office consultation summary, flipping through and seeing the lab results including BG readings, the A1c’s, the qualitative assessments of my control, “fair to good control”, “excellent control”, the NPH and Regular insulins regimen. It’s a glimpse at the girl who was all of 5’ tall (I’m 5’7” now) and weighed 93 pounds on her last visit to see Dr. Travis, the girl who had only had diabetes for 6 short years, had recently moved and started middle school, and was, unbeknownst to her, about to move halfway across the country.

One thing that was of great interest to me was the doctor’s assessment of how my mom and I divided my diabetes responsibilities. My mom ordered new insulin, treated ketosis, and ordered new supplies. We both planned activities. I rotated my shots (I will die repeating the matra, “rotate, rotate, rotate”), changed my diet, checked my sugar, gave my insulin, treated hypoglycemia, selected meals, drew up my insulin, changed my insulin dose, planned my diet, and I was the one “Mostly ‘In Charge’ of Diabetes”. Although, notice I was only checking my BG about twice a week, “when she feels bad or mom nags”. Surely, a glimpse of things to come, and a sign that although I was only 11 years old, I was barreling toward adolescence.

Very shortly thereafter, I did get my first meter, and that inspired me to increase how often I was checking my BG, but new toys only seem novel and interesting for so long. I’ve actually developed some rather opinionated ideas about divvying up diabetes responsibilities between kids and parents, partly based on my own experience, partly from the experiences of others I’ve known, and partly from reading research on diabetes in adolescents. Looking over my records reinforced my belief that most families give their kids too much diabetes responsibility too soon. However, back then, no one knew any better because people hadn’t been managing diabetes with MDI or BG testing for all that long. Seeing my family’s way of doing things though, knowing we were doing the best we knew how to do it, knowing that no one else knew better enough to advise us differently, knowing the groundwork that was being laid for me to undo everything, really affected me, bringing tears to my eyes, and giving me lots to think about.

Yesterday, it came in the mail. Records from Camp Sweeney. Dated 1979, my first summer there. It was weird to see them. I looked at them, I set them down, I looked at them again. I did that several times. I’ve done it several times today. It’s like treasure, except it’s really of no value to anyone but me.

Unless you were diagnosed sometime prior to 1983, give or take a couple of years, the progress report results probably won’t mean a lot to you. The test results are from urine testing. And my insulin dose? A single injection of NPH every morning. Talk about kicking it old school.

Camp Sweeney Application 1979

Camp Sweeney Med Info 79

Camp Sweeney Progress Report 1979