Thursday, December 19, 2013

What my daughter made for dinner

My non-D-daughter is taking "Family & Consumer Science" right now at school.  I'd say that I'm pretty sure that's 2013 for "Home Economics," but I'm probably not allowed to.  Anyway, tonight was one of her major projects: making dinner for the family, starting with menu planning and grocery shopping.  This is a HUGE undertaking for her.  I love her dearly, in so many ways, but this promised trouble from the start.  She is an extremely picky eater, shows no interest in cooking, and her only expressed interest in grocery shopping is to get a donut when her D-sister isn't there (not that we don't allow her to eat donuts...).  This is amplified by her sister's ever too ready side by side comparison; my other daughter is an adventurous eater, loves to cook, and can easily find her way around the grocery store.

She looked through numerous cookbooks and selected her recipes.  She went through the ingredients we had on hand and then made a grocery list of the items she'd need.  So, with the greatest of attitudes, I took her shopping today.  We collected the items she'd need, went home, and she started to cook.

She did fine with the appetizer she had selected--spiced pecans.  She learned about how to measure butter by the markings on the stick.  She learned about cayenne and cumin, which were new to her.  She learned how important the stove temperature can be.  Her feelings were a little hurt when her sister didn't want to try the nuts, and wasn't very appreciative when I couldn't help pointing out the obvious: "See how someone's feelings can be hurt when you cook something and they won't even try it?"  (I really couldn't help it.)  But she was learning!  So far, so good.  And then she shifted to the main course, and that's where we hit a speed bump.

"Dad, where's the chicken?"

"What chicken, sweetheart?"

"Dad, I'm making chicken teriyaki.  I forgot to put chicken on the list.  Oh no, I guess we're eating nuts for dinner."

"Honey, that's okay.  Mom or I can take you to get chicken.  But making dinner really is harder than it looks, isn't it?"  (I couldn't help it again.)

So my wife took her, with heavier than usual traffic due to the evening rush, and they came back 6 miles and 1 hour later.

She was a little deflated, but I got to make up for my previous utterances and tell her the story of how when I started cooking I was eager and adventurous, but completely incapable of getting dinner on the table before 9 (or 10) pm.  She still needed a lot of cheerleading, because the poor thing was really struggling and feeling the effort and the burden grow.  ("Everyone is getting hungrier and it's getting later and later.  I can't believe I forgot the chicken.  Please eat the nuts.  At least you'll have something.  I'm going to fail this class.")

We sat down to eat, and no sooner did she sit, with apron on--very cute--than she sprang back up to go make dessert.

"Dad, where's the powdered sugar?"
"Where's the vanilla extract?"
"Do we have a 'fine mesh sieve' Dad?"

It took four tries to get the beaters attached to the hand mixer, but she watched with amusement as the cream formed firm peaks, then took the blackberry puree ("Dad, do we have a food processor?") and folded it in ("Where is the rubber spatula?!") along with some whole fresh blackberries.

In the end, everything was delicious, and she learned a ton.  She obviously learned the most from her stumbles.  She lamented that she thought everyone else in class probably did better than she did, and that she really was no good at it.  I reminded her that it all tasted great, and that she just needs more practice and more experience.  She was glad it tasted good, but was tired and it was getting late, and she had other homework to do, which she hadn't had a chance to start.  She struggled through that, and her shower, and lost even more steam as she made her way to bed.  She was visibly relieved when I told her I'd do the dishes--she had done quite enough.  I tucked her in and wished her good night.

And then I went down to clean up and do those dishes.  I eventually cleared away enough debris to find the pile of cookbooks on the counter.  Sitting on top, still open to her recipe, was the one she had used tonight.  I closed it to put it away--and I stopped.  It was only then that I realized she had used a cookbook "for families living with type 1 diabetes."  She had made low-carb selections, and adapted them to be gluten free.  She hadn't had to ask for any help with those parts.  She knows that stuff cold, though she has neither diabetes nor celiac herself.  She was already asleep, but in the morning I'll be sure to tell her that despite what she thinks, I'm pretty certain that no one else in her class can do what she did tonight.

Thursday, September 12, 2013

Unexpected Perspective

It was a fairly typical day, with an afternoon schedule full of patients and a meeting at the end of the day, the only significant mystery being how late I'd be to the meeting because of the perpetual time-creep that has me running several minutes behind (at least) by the end of the day.

One particular patient I saw today was not very interesting at all, almost downright forgettable.  He was so absolutely straightforward (both medically and with direct communication) that I finished in 5 minutes fewer than the time he was scheduled for.  He is seen once a year, takes one medication, has no side effects, has exactly the desired response to that medication, and has no other issues.  He is a very nice, professional man who works hard, is good at what he does, and enjoys grown-up leisure activities.  I gave him a new prescription, told him I would see him in a year--sooner if the need or desire arose--and moved on to the next patient.  I didn't dictate a note on our visit, leaving that for later in the evening so that I wouldn't miss [more of] my meeting.  My other patients were all far more medically "interesting" (i.e., complicated, and generally not something someone aspires to) than he was, and I soon forgot about our visit.

Fast forward past my other patients, my meeting, dinner, kids' homework, bedtime battles...I sat down to dictate the afternoon's appointments.  When I got to him, I noticed his birthdate.  He was born on the day I was diagnosed with diabetes, 24 years ago.  Over the years I've gotten used to just counting (though there were several years where I wasn't counting at all, the years just stacking up).  Though I've reflected a little on the number, I haven't reflected at all on the actual time represented by that number.  I  stopped before dictating, transfixed by his birthdate, and it suddenly seemed that I've had diabetes forever. Since I was diagnosed, he was born, learned to crawl, to walk, to talk, went to kindergarten, high school, college, work.  He shaves.  He votes.  He drinks.  He's married.  He has a kid on the way.  Suddenly I saw my diabetes as an adult itself, having grown through all of those stages, in a flash.  How can my diabetes be old enough to do all of those things?

In the end, completely unexpectedly and in a completely new light, he was the most interesting patient I'd seen not only today, but in a very long time.

Saturday, August 31, 2013

Firsts

Almost free-association on some firsts in my life. Almost.

Tenley is the first person I ever knew to have diabetes.  She is also the first person I knew at the time of their diagnosis--I knew her as the girl across the street for as long as I could remember.  We were great friends, very close, and she was like a sister to me.  She is a year older than me, and was probably 7 or 8 when she was diagnosed.  I have a vague memory of her mother, Ann, crying.  I remember my mother crying too.  I was little and, I imagine, deliberately insulated from what was going on.  I didn't know much about Tenley's diabetes, except that she was "very sick."  Something to do with sugar, but I didn't understand what.  When she came home after several days, she seemed fine to me.  As a kid, that's what was most important: she seemed okay, so the details didn't really matter.

She is also the first person I thought of when I was diagnosed with diabetes at age 17.  Something to do with sugar, but I still didn't really know what.

Alvin was one of my neighbors back then, I think, though I wasn't quite sure where he lived.  He seemed to be in the neighborhood often, and he walked everywhere, so I figured he must have lived nearby.  He was the first person I knew who was very "different."  That was how I thought of him.  I wasn't sure why he was different, but he was.  He seemed nice, was always cheerful, but by the same token was scary to a little kid like me as well.  I don't remember him clearly enough, but as I look back I now understand that he was mentally retarded and also probably had cerebral palsy. Tenley's older brother Tim had made Alvin a walking wheel, or at least that's how I thought of it--I'm not really sure what to call it.  I think it was a bike wheel on a long metal handle, with a bike grip and an odometer.  Alvin took it everywhere, and he would proudly tell people how far he had walked.  He was especially enthusiastic when he'd see Tim and announce how many miles he had on his odometer.

I always looked up to Tim.  He's a few years older than Tenley (Tracey is in between Tim and Tenley, and Todd is the oldest of the four).  Though a few years older than me, Tim still seemed too young to ride the orange, gas-powered dirt bike that he sometimes brought across the street for me to look at (and attempt to lift).  I was in awe of that bike and of Tim's being able to handle it.  I loved that he would hold it up and let me sit on the seat, twist the throttle, and practice my "vroom vroom vroooooooooom" voice, silently wishing the engine was running when doing so.

Tim was diagnosed with type 1 diabetes years later, the first person I knew who was diagnosed as an adult.  Since I had been diagnosed at 17--almost an adult--he turned to me for advice and information during his post-diagnosis maelstrom, and then later too, when things settled down a bit.  I was still in college--nowhere near medical school yet--and remember that being the first time that someone specifically sought health advice from me.

Paul--father to Todd, Tim, Tracey, and Tenley, and husband to Ann--was my first dentist.  He gave me my first filling and my first Novocain.  He is the first person I knew who chewed tobacco, and their house was the first place I ever saw a spitoon.  He's the first person I knew who hunted, and the first person I knew to pour so much passion into hunting.  He trained retrievers and hunted ducks, and the family dogs--always big--were the first dogs I feared, and the first I grew close to once the fear began to ebb.

Ann is the first second-mom I had.  During those formative years when we lived across the street, from age 2 to 7 for me, she seemed more like another mom than a neighbor, and I always thought of her that way--another mother-type who happened to live across the street.  (Neighbors, to me, were only people who lived next to you, not across from you.)  After we moved a couple of miles away, our families remained very close.  When my wife and I began dating, Ann was the first to tell me "She's a keeper!" She was also the first to really mean it, and to make sure that I knew that.

That was 18 years ago.  Life has led me away from that area--not extremely far, but far enough that I grew apart from their family.  My parents and sister have stayed close, and they would give me updates from time to time.  Ann is the first real smoker I ever knew, so I wasn't especially surprised when I learned that she had been diagnosed with lung cancer.  I think I was still in medical school at the time, but already knew lots of statistics about it--how low the survival rates, how poor the prognosis.  Ann did great from all I heard, but I expected the worst.  Lung cancer treatment often seems good at first, but it tends to return, usually relatively soon in the scheme of things, which is why the five year survival is so low.  I kept expecting to hear about a recurrence, only I never did.  I kept hearing updates about Ann and Paul, their kids and grandkids, and they were all about life--not about cancer.  Eventually I got used to this--this anticipation of bad news never delivered--and without realizing it, that feeling became so familiar, and the lack of bad news so consistent, that I began to feel like it would never come.  Even though I believed that Ann's cancer would come back, it truly felt like it never would, and that Ann would just keep on going forever.

At the same time, my medical career was progressing, and I was gaining ever more experience with numerous conditions, from birth to death and everything in between.  I have cared for many patients at the end of their lives, and I hope and believe that I have helped many to have greater peace when they have ultimately died.  I have known many patients who have transitioned to hospice to complete their journey through life.  I have become comfortable--or at least at peace--with end-of-life and hospice.  Though sad and final, it seems to be more natural when appropriate, especially in contrast to the endless and sometimes torturous things people may otherwise endure in our life-prolonging and cure-oriented health system.  First do no harm.

Ann has been in the hospital all week.  She has been there before.  But today she transferred to hospice.

I am not as accepting as I am for the patients with whom I have traveled this path. While friendly, they have been patients, not friends--at least, not my friends.  Ann is the first friend I know who has entered hospice. I have believed for a long time that this would eventually happen, but I have grown accustomed to this expectation being unmet. So I was surprised.  I was unprepared.  I am sad.  As the evening and then night have gone on, I am beginning to be accepting.  I am remembering--sometimes smiling, sometimes aching.

I am reflecting, on so many firsts.


Monday, July 22, 2013

Another Hiatus, Ended Better Yet

Spoiler alert: this is a sequel.  It is a welcome follow-up to a previous post from five months earlier, which actually was my last substantive post until now.  You see, there's this pattern that is emerging, wherein I feel moved to write a blog post immediately after Children With Diabetes conferences.  Or maybe it's after crossing paths with Ed Damiano, but I'm getting ahead of myself.

I've just returned from CWD's Friends For Life 2013 conference in Orlando, Florida.  Last year was my first time attending FFL, and I resolved right then and there to do everything possible to make it so that I never miss another.  The biggest mistake we made last year was staying a couple of days after the conference to go to theme parks.  We hadn't anticipated how empty the hotel's conference center would be, nor how quickly the next convention would move in and start setting up (it felt like they were desecrating our home while we still lived there), nor how thoroughly depressing that would be.

So this year, we added a couple of days at the beginning, before the conference began.  It was on one of those mornings that I was standing in line with my family, waiting to be seated for breakfast at Pepper's Market, at Disney's Coronado Springs Resort.  Up walked one of my favorite PWDs, Natalie, whom I hadn't seen since CWD's Focus on Technology in February in Crystal City, Virginia.  Hugs all around, and we began talking, and didn't really stop talking.  Before long, we got to the topic of Ed Damiano and the Bionic Pancreas, how she'd like to participate in the research study, and how I felt that seeing that one lecture changed my life. We were both talking at the same time, ever so enthusiastic and ever so passionate (which is Natalie all the time as far as I can tell, and me not nearly as often). I was standing next to a pillar at the restaurant's entrance and she was facing me, as people were lining up behind us and we weren't moving forward with the line as we should, nor taking the table offered to us.  So I didn't see who was approaching when she turned to the side and said to the approaching group "No way! We were just talking about you!" and then Ed Damiano rounded the corner and stood right in front of me.

"Ed, have you met my friend Sean?  He's a family physician with type 1 diabetes," said Natalie, as I struggled to maintain a shred of composure.

I shook his hand and told him "I just wanted to say thank you for all that you're doing and all that you've done.  I saw your lecture at CWD's Focus on Technology in DC in February, and it blew me away.  I've been to a lot of lectures since medical school, and I'm really not the 'best thing ever!' type, but I have to tell you, with complete sincerity, that your talk was the best lecture I've ever seen.  After last year's FFL I started to blog, thought I would blog a lot, but only wrote two posts and then stopped.  Seeing your lecture, months later, finally inspired me to write another post."

"You wrote a blog post about that?  What was it called?" he asked me.

I struggled to recall the name, which eventually came to me: "Long hiatus, ended well," I replied.

"You wrote that?!" he asked, stepping back as his eyebrows registered surprise, "I've been dying to meet you!"

Then it was my eyebrows' turn to rocket to the ceiling.  As they did, also to my surprise, his daughter stepped toward me, opened her arms, reached up, and gave me a tight hug.

As I regained my waning composure, I managed to say something like: "You've been dying to meet me? That's ridiculous. I've been dying to meet you!"

As we talked some more, he invited my family and me to dinner with his team and their families the evening before his lecture.  Reservations for a group of 35.  I was shocked and flattered to be included.  We exchanged phone numbers so he'd be able to reach me with dinner details.

We finally managed to eat breakfast, and then it was off for a day at Epcot.

*          *          *

Fast forward to Wednesday, after the grand opening of the exhibit hall.  Ed texted me to meet at his Bionic Pancreas booth, so everyone could walk over together for dinner.  Some of the families didn't stay since the reservation was so late, but it was still a large group, at multiple tables.  Thankful for Ed's gracious invitation, I took an empty seat at one of the tables, just glad to be there, and expecting a pleasant dinner with some of his team members.  I was shocked all over again when Ed sat down directly across from me.  And then, to heighten the already unparalleled surreality, he matter-of-factly laid down all of the pieces of his experimental bionic pancreas device right on the table between us, where it sat the whole evening, except for when he picked it up to take it apart and show me its insides.

We talked and shared over a two and a half hour dinner and sparkling water. I learned more about his research, his family, his team, his plan, and his charm. And, like just about any other parent at CWD, he made me feel very much at ease in talking with him and sharing ideas.  At one point he mentioned a new feature they were considering, and I felt compelled to offer my [differing] opinion.  While I was talking, I was conscious of a part of my brain saying "Don't tell him his business!"  But I felt strongly, he listened closely, and in the end he said "That's a great point. I hadn't thought of it that way. We'll really need to look at that."

I spoke with other team members sitting next to and across from me as well, from a pump designer, to a pediatric endocrine research fellow, to Firas El-Khatib, the genius behind the controller algorithm and computer code that run the magic system.

It was, without a doubt, one of the most incredible, amazing, and unexpected experiences I have ever had.

Around midnight, I eventually made it back to my hotel room.  The kids were fast asleep, and my wife roused enough to make sure it was me who was entering the room.  I couldn't contain my excitement, and in a semi-coherent flurry of mostly complete sentences, I tried to recount some of the highlights to her, but I kept interrupting myself as I went on and on.

I eventually went to bed, still not believing the day I had just had, and looking forward to what the next day would bring, including Ed's formal presentation to the conference attendees.  The talk I had attended five months earlier had included results from his 2-day experiments, before the newest study had started.  Ed had just told me at dinner that I was in for quite a surprise at tomorrow's talk, when I'd get to see the 5-day data from the newest study.  He was pretty sure I'd be pleased.  (Of course, he was absolutely right.)  As I finally fell asleep, I was vaguely aware of the enormous smile that wouldn't leave my face.

*          *          *

Back to that day at breakfast where I first met Ed.  I could hardly eat.  I had so many thoughts and feelings ricocheting around I didn't know what to do with myself.  I could have gone home right then and there and the conference would already have been an enormous success.

CWD FFL is just that way.  The amazing happens.  The unexpected happens.  Lives are changed.  Energy is found, and then it is focused.  Hope is reignited, fanned, fueled.

And the conference hadn't even started yet.

Which is another sequel, all to itself.

Tuesday, February 12, 2013

Spare a Rose, Save a Child! This Valentine's Day

My recent interest in the progress of the artificial pancreas has made me realize that while this helps fan the flames of hope here, there are also certain things we take for granted, like the widespread availability of insulin in the United States. To be sure, it comes at a certain expense, more significant for some than for others, and depending upon the availability and the terms of one's prescription plan, but it is widely available.  Picture your drive to work or school this morning.  Odds are you passed bottles and bottles of insulin, stacked inside the refrigerators of the many pharmacies scattered around even our smaller towns.  But many other countries are different. Insulin is not so widely available, and as others have pointed out on their D-blogs this week, type 1 diabetes in other countries may still most likely be a quickly fatal disease, due largely to lack of availability of insulin and other basic elements of diabetes care. So please join me and others in the "spare a rose, save a child!" campaign, and consider donating to this great cause so that insulin, which we often take for granted here in the United States, might be made available to someone else less fortunate beyond our borders. Donate here, please. Thank you.

Monday, February 4, 2013

Long hiatus, ended well

I thought I'd be really into this blogging thing after Children With Diabetes Friends For Life 2012 in Orlando.  I had "found my voice."  I posted twice.  Then I apparently lost my voice.  Actually, I broke my hand.  Couldn't type, then everything just became too busy, which I believe is the most common American Excuse, and I didn't post again.  I wanted to post, I meant to post, but I never took the time to do it.  I pretty much just stuck to Facebook for miniposts (read: status updates) and reading others' blogs.

And then a funny thing happened.  Six months had passed and suddenly it was time for the very next CWD event, the one I'd been looking forward to ever since FFL ended in July: Conference on Technology 2013 in Crystal City, Virginia.

I learned a ton.  I learned why I should refer to it as #cwdtech.  I learned why I cry at the end of every event like this one, without a shred of sadness.  I learned about friendship and kinship and the T1D-bond that I already knew much about, but my understanding of all of these evolved so very much more in the span of about 36 hours.  I learned of some of the differences between online support and how invaluable and constant it can be, and about offline, in-person support and how incomparable but fleeting it can be.  I learned about paying attention to your internal signals that tell you what you are passionate about and what you are ambivalent about.  I learned about my kids--both of them--in ways I didn't expect.  I learned about my wife and learned (again) about how much more thanks I owe her than I had ever thought before, when I already knew that I owed her so much.

But most of all I learned about hope.  More specifically, about watching in wonder as dormant and forgotten hope is revived before your very eyes into something stronger and more vital than it ever was before you lost it.

When I was diagnosed with type 1 diabetes, approaching 24 years ago,  I was told by my endocrinologist that research was advancing more quickly than ever before, and that we'd have a cure in 5 years, 10 at most.  I read the research updates, fueling my hope, and waited eagerly for weeks, and then months, and then years...and then forever, because I never found another update to numerous threads of such hopeful research, just silence.  That hurt.  I began eventually not to let my hopes be raised and leave me vulnerable to having them dashed.  I disengaged from any sense of T1D community.  I stopped paying attention to research.  I had lost hope, and I had lost faith in hope.

When my DiaDaughter was diagnosed 3 years ago, I had to let my hopes be rekindled.  There was this "artificial pancreas" concept that was taking traction, with the better pumps and improving continuous glucose monitors on the market, but which seemed like too much to hope for.  I attended a session on them at CWD Focus on Technology last year, and my hope began to awaken, a warm glow.  I could see the dots connected and envision what it might look like and do, but as the presenter pointed out, there were many steps along the path to a closed loop artificial pancreas, and they'd have to be hurdled one at a time.  He started to enumerate those hurdles, and before long the goal seemed very far away--imaginable, but distant.

So it was with some trepidation that I attended another session on ostensibly the same topic yesterday. What I was treated to was beyond my wildest expectations.  I had low expectations, to be sure, but I had no idea that almost all of the hurdles I had heard about just 12 months earlier had essentially been solved.  I was expecting a complex scientific presentation, and it was.  I wasn't expecting such an emotional--actually ecstatic--deep, passionate reaction to this scientific presentation.  I wasn't expecting my largely forgotten, sputtering hope to come roaring back with such force, and more force than it had ever had before I'd even lost it in the first place.

I am happy now to say that my hope is alive, and it is strong.  It is easily now stronger than it has been at any other time in the past 23 1/2 years.  Though it was strong at first, it had no real form.  It was entirely emotional and based on faith in my endocrinologist, his expertise, and his own sense of hope, to which I had to defer as a surrogate for my own.  Today, though, I feel like I have seen the future, and a future which is not at all far away.  I have seen it in tremendous detail, for that is how it was shown to me.  I have seen pictures, and data, and technology, and journal articles, and a device, and a patent, and--perhaps most importantly--the unbridled passion of a man who I KNOW will make it happen.  I know this not because his passion is contagious (it is), not because his results are stunning (they are), but because he has already made it happen.  So far for only two days at a time, but that's because his study had to stop after two days per subject.  Next week he'll start studying it for six days at a time, and I know it will work, because if it doesn't, he won't rest until he makes it so.  He's racing the clock, the four short years until a promise comes due which he made to his son with T1, the son he promised when he was diagnosed that he'd have this system for him when he goes to college.

I wouldn't have believed him when he made that promise.  But I also wouldn't have believed what I saw yesterday.

The wonderful feeling now is that I do believe.  I love this feeling.  I've never had it before.  I allow myself again to hope, because I now truly believe.

Thursday, July 26, 2012

Proud DiaDaddy

I was stuck at work tonight, still cleaning up from a crippling network outage from 3 days ago (!) that left me back-entering data.  Sounds fun, right?

My cell phone buzzed, I looked at the screen and saw it was my wife, and answered.  I had no idea what the string of shrieking that ensued meant.  It sounded happy, but the line dropped.  The phone rang again, and this time my DiaDaughter said happily, hurriedly, but this time quite clearly, "I did my own site change Daddy!  I did it all by myself!"

There are no words to express my elation at hearing her joy and her pride in doing this.  I hope I matched hers when I shouted how proud I am of her, how I can't believe it, how she should be so proud of herself, and tell me everything about it!!!

She went on and on, describing everything in detail, her words flying out at a speed she inherited from her mother.  The words were all great, but the only thing that really mattered was how clearly her sense of pride and accomplishment drove them all from her heart to her lips.

But, as I am wont to do, I suffered a moment of mixed emotions.  I was sad and angry that she should have to violate her body in ways most kids don't.  I blamed diabetes for this screwed up situation that should make a kid giddy about poking herself with a needle, then call her dad and gush in unrestrained glee about it.

But just as quickly those negative thoughts evaporated.  Because you know what?  The bottom line is that she was giddy.  She did call me and gush in unrestrained glee.  I've never heard her happier, or prouder (or giddier or more gleeful, for that matter).  She'll never forget this day or the emotional high she experienced--and deserves--and none of that would have happened today if she didn't have diabetes.