Saturday, July 21, 2012

Welcome to t1works

So here it first post on my first blog.  I'm new at this, so bear with me, please spread the word, comment if you'd like, and keep coming to visit.

I've been thinking a lot lately about diabetes and work.  Not "work" as in my job, but work in every sense.  I've met a lot of fellow T1D'ers over the years, and an increasing number relatively recently, which has been absolutely energizing.  We all agree that type 1 diabetes takes a lot of work.  It's not work that any of us asked for.  It's not work we really want.  It's not work we especially enjoy.  But we can't just quit this work and go looking for something else.  No matter our true professions, we're stuck with this work too.  Sometimes it feels like my main job.  Sometimes it feels like a second job.  But it doesn't go away.  I get no days off, no weekends, no vacations, no sick leave.  Just a 24 hour shift, every single day.  So I'd better make the most of it.  I need to make type 1 work.  We all need to make type 1 work for us.

For years I worked at doing the things I was supposed to do.  I checked my glucose many times a day, I counted carbs as best I could, I asked my endocrinologist if I could take insulin more frequently (each time I ate, plus bedtime) than he recommended (twice a day, mixed NPH and Regular) because it seemed to me life could be more flexible and spontaneous that way.  I struggled to do it, but eventually managed to add a vigorous, regular exercise program to my life.  But something was still missing.  I couldn't find it in any endocrinologist, though I certainly tried in many.  I couldn't find it in medical school, residency, or practicing as a family doctor since then.  I had pretty much given up looking.  I was going along on autopilot, doing all of the work I had learned to do.  I had stopped keeping up on the latest research, because the cure I was promised within five years of my diagnosis in 1989, and which I saw lurking in every research report or news story I read, seemed to vanish--those reports always seemed so promising, but there was never any follow up, and they just disappeared without another word.

So I stopped actively hoping and waiting.  I became much more passive.  I kept on doing the same type 1 work I had always done, with unfortunately varying degrees of success, but I didn't think about it a whole lot.  I did it without paying much attention.

I was grateful, relieved, elated, flattered, enchanted when I met and later married the woman who would become the most important thing in my life.  She accepted me and loved me wholly, diabetes and all, just as it should be but didn't seem possible because I had a chronic disease and who would want me after all.  This incredible woman wasn't fazed by my having T1.  We lived and studied and worked and played and enjoyed several fantastical years together.  Then we had twin daughters, and my already wonderful life suddenly got exponentially better.  "See?" I thought, "Type 1 won't stop me.  I can make type 1 work.  I'm not even working that hard at it.  I know what I'm doing.  I'm fine staying on autopilot."

Then everything changed.  One of my daughters was diagnosed with type 1, quite unexpectedly and quite devastatingly, at the age of 7, and suddenly I had to work harder.  And better.  I had to work more on my own type 1, 24/7.  But now I had a new 24/7 type 1 job, taking care of her diabetes too.

Even more than before, that missing something still left me feeling a conspicuous void somewhere inside.  Luckily, and in a life altering way, my wife found a family type 1 diabetes conference for us to attend, and for the first time probably ever, I was surrounded by families of children with type 1.  I was sort of prepared for that.  I wasn't at all prepared for being surrounded by the large number of adults there with type 1, working for the organization, presenting the seminars, working for industry, just being there.  I learned a ton, bonded a ton, and when the weekend drew to a close and the breakneck pace of the information- and activity-packed itinerary ground to a sudden halt, the emotions all crashed in at once.  It was and is one of the most incredible experiences I've had, and it energized me in unbelievable ways.  I worked much harder at my diabetes after that, and at my daughter's.  After 21 years I finally ended my resistance to switching to a pump.  I started learning, engaging, communicating.  I knew I had to go back to the conference the following year.

So I did.  I learned much less that time, as I had learned so much at the previous conference and during the year in between.  But the bonding was the same.  This time I was telling parents of newly diagnosed kids the things others had told me the year before.  I thought I was getting much less out of the experience, but then the weekend ended, and the exact same emotions crashed down in exactly the same way.  The bonding and the sharing and support were identical to the year before.

I realized then how critically important it is to attend as many events like this as I can, and turned next to Children With Diabetes and their Focus on Technology conference.  It was bigger, with a different goal and a different target audience.  I met some amazing new people, and the seeds of some new bonds were planted.  That set the stage for our first Friends for Life, and I can't even begin to describe that here, and will attempt to do so later.  Suffice it to say for now, though, that I don't ever plan to miss another FFL.

I yearn now for events like these.  They don't happen often enough, or sometimes near enough, but they keep me going, they keep me focused, and they keep me off of autopilot.  They make me want to do my ever important T1 work better, and harder, and smarter.  They make me want to be more in charge.  I count down until the next event, until those feelings can return, and the electricity that comes with them.  There is nothing else like gathering, connecting, talking, and just letting things unfold.

But it's not the events by themselves; they'd be nothing without the people there.  To me, it's the community that works best about type 1, and bringing that community together has no comparison.

So while I'd wait impatiently between gatherings, these touch points with others who share in this experience, I'd feel isolated again with my T1 and my daughter's.  Only very slowly and very recently has it dawned on me how much support there can be now at any time; I just hadn't known where to find it: when we can't be together in person, we can be together online.  Online didn't functionally exist when I was diagnosed.  But we have it now, and it's critical.

The best way I know to build this online community and to forge these ties is to visit the community's blogs, subscribe to them if you can, share them with others, and post comments to get discussions going.

I'm inspired by many, from my wife Tamara, to my daughter, to Kerri Sparling (sixuntilme), to Scott Johnson (scottsdiabetes) and Kelly Kunik (diabetesaliciousness), to name a few.  So now I blog too.  I'm just finding my voice, and I'm just finding my message, but so far it's this:


It has to.


  1. Sean -
    I am so glad you found (and are using) your voice, your inspiration and the Diabetes On-line community! And I'm so glad the DOC (diabetes on-line community) has found you! And can I just say that I'm so proud that you & Tamara are blogging!
    Keep working and doing and being with your t1 and continue to inspire everyone you come in contact with - including your daughters!
    I love the electricity that connecting with others who live the dlife brings and I miss "Friends For Life" something awful.

    And finally, thanks for the shout out in your inaugural post and including me in such great company - I'm honored!
    Kelly K

  2. Sean, I can't even describe how excited I am to see you start a blog!

    I find the exercise of assigning words to the often vague and confusing feelings we experience to be one of the most therapeutic things around. It provides tremendous value to me. The fact that blogging makes it possible to do that, with an interactive audience, is like ice in the Diet Coke. :-)

    It was a real pleasure to meet you and your amazing family. They are a real treat! I hope our paths will cross again soon.

  3. I am so glad you've joined the blogosphere, Sean!! Your family is a source of constant inspiration for me, and I'm so glad you're sharing your voice with the world. :)

  4. Welcome fellow blogger. One of my kids is a Setabaid camper. Great group.

    I look forward to more on your dual perspective as a T1 and a dad of a CWD.

    All the Best - Bennet

  5. Keep it up Sean. The DOC makes everything better.