25.

Today is my 25th diaversary, a day I have anticipated with the whole spectrum of emotions inherent to living with diabetes.  If you want the lovey dovey, Rah! Rah! diabetes blog post, I can happily refer you to last year’s diaversary musings.  This year, the raw emotion needs no further introduction.

 

Sunday, September 27, 2015.  Stanford University, Palo Alto, CA.  Medicine X.

“Ahh!  Dr. Bonnie Feldman’s autoimmune disease workshop already started!  We have to go!” I texted my Stanford Medicine X (#MedX) buddy from Minn-e-so-tah, Britta Bloomquist.

As I hurried upstairs to the correct location, I found Sophie Thacher, a fellow diabetes advocate, and encouraged her to join.

The three of us bustled into the room just as the opening remarks were concluding, and Dr. Feldman, et al. welcomed us heartily.  As I took my seat at the front of the classroom, an easel used for brainstorming ideas crashed down upon my head.

Clearly, we had arrived in comical style…

Britta introduced herself first, describing how she navigated the healthcare delivery system of Minnesota in search of proper diagnosis and treatment.  When the spotlight landed on me, the words tumbled out in a nervous haze.

“I was diagnosed with type 1 diabetes just before my third birthday.  January will mark 25 years since my diagnosis.”

In my mind, time stood still.  My glance met that of a young doctor sitting in the middle of the room, and he seemed like one of those cartoons with thoughts encapsulated in a bubble coming out of his head.

thought bubble3

But you’re so… young, the doctor thought.*

thought bubble2

Yes.  How has a quarter-century of living with this disease gone by already?, I blinked back in reply.*

 

Frankly, 25 years of diabetes is mind-boggling to me.  To say those words out loud to a room full of people who “got it” was a moment that redefined my relationship with my disease.

You’re still here.  Do something with that gift.  

Yes, I am young.  Yet my body has been poked by over 202,000 needles since my diagnosis.  Diabetes has been there for every major life event: birthdays, senior prom, academic graduation ceremonies, and more.

At times, diabetes has kicked and screamed and thrown punches at the most inconvenient moments.  I have shed my fair share of tears hidden in bathroom stalls and parking lots.

My 25th diaversary thoughts are an emotional teeter-totter.  I feel empowered by wonderful patient communities; lucky to have somehow escaped diabetes’ truly abusive potential thus far; thankful for family, friends, and healthcare team members who loyally support my fight; disappointed that with all the braniacs in the world, the diabetes code has still not been cracked; not surprised because the one unspoken truth about diabetes is that it is a #JerkFace; yet hopeful that my future children and grandchildren will not have to know what this jumble of emotions feels like, because we are that much closer to cracking the diabetes code than we were 25 years ago.

What I most admire about diabetics is our willingness to exceed diabetes’ persistence.  If diabetes is not going anywhere in a hurry, neither are we.

Life with diabetes is one big run-on sentence, after all.  Every. single. morning. we wake up and face our reality.  We scramble eggs and put on clean clothes and go to school or work, all after making life-sustaining treatment decisions and prodding our skin with needles and somehow maintaining the faith that a better day will eventually arrive.  That is all we can really ask of ourselves- to keep the faith. 

To see 25 is a poignant reminder of the many lives touched by this disease.  My heart breaks for those who never got the chance to reach this milestone.  I know that they are in a better place; heaven doesn’t care about silly things like basal rates or pre-boluses.  But I still hurt for their families and friends, for the joyous spirits prematurely taken from this world.

On the day of my diagnosis, I was rushed to the Emergency Room with a blood sugar value of over 900 mg/dL after my mother recognized some of the symptoms of type 1 diabetes and brought me to a local lab to test one drop of blood.  The doctors and nurses were frantic to save me.  The previous day, another child- about the same age as me- passed away at that very hospital; his type 1 diabetes had not been diagnosed and treated in time.

I do not know that little boy’s name.  I do not know his family, or who he would have become.  But this 25th diaversary reflection is just as much about his story as it is about mine. 

*****

When I was a child, my father occasionally climbed into bed with me in the morning.  He would prick my finger to check my blood sugar, squeeze the blood onto the test strip, and determine the proper insulin doses.

He would also hug me tightly, whispering, “If Mommy and I could take diabetes from you and instead have it ourselves, we would do that in a heartbeat.  One day soon there will be a cure.  We will eat whatever we want and never have to worry about insulin again.”

My back turned to him, I discreetly wiped away tears until he left the room.

The cure may be 25 years tardy as far as my family and I are concerned, but what is most important is that it eventually gets here.  If the cure does not arrive in time for me and you, then we have to at least scatter the trail of breadcrumbs for those who will come after us.  Our diabetes legacy is not so much about the individual A1c results, but more about how we make the world better before we leave.

Until diabetes is a thing of the past, I will always be that little girl, blinking back tears in an act of strength, praying for the cure.

Here’s to 25.

 

 

 

 

*Cartoon thought bubbles source: Microsoft Office clip art

**Facebook has deactivated my personal account because apparently they forgot to have an extra cup of very light, no sugar coffee last week.  (Facebook’s overly-dramatic names policy is not in favor of the nickname on my account.  #LameBook)  In the meantime, please follow my Facebook fan page here and share with your friends.  Thanks!

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22 thoughts on “25.

  1. Words are not adequate to state how challenging and difficult it is to live with this burden for his long as you have. Congratulations are not appropriate, admiration for your spirit and tenacity and spunk is. Keep on keeping on — until there is a cure.

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  2. This is such a fantastic piece! Fantastic reflection. I can’t imagine having t1d that long, I’m not even 24 yet and I’ve only had it for 6 years.

    “I do not know that little boy’s name. I do not know his family, or who he would have become. But this 25th diaversary reflection is just as much about his story as it is about mine”

    Tears. Tears everywhere

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  3. Ally, without saying the words happy diaversary, I have great admiration for you. Your journey with diabetes shines through in your heartfelt writing and your opinions. If there’s one person to convince us that we need that cure, it’s you. I hope that you will see that cure in the next 25 years (sooner, rather than later).

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  4. I’ve been putting off reading this all day. I don’t cry at too much d-stuff anymore, but this got me. In a good way. Thanks for writing it. It’s been 9 years for my son, like you he was dxd very young. Diabetes has been there for everything.

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    1. Thank you for reading, and for your kind words. In retrospect, I should have put in another blog asterisk to say that my life has been mostly good despite diabetes being the ever-present “companion.” I wish you and your son all the best- as diabetes tags along for the ride and you enjoy life.

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  5. Cheers to 25. And 25 more. And 25 more. I hope that you will see a cure in your lifetime. But If not, I hope that you continue to fight against while not being limited by Type 1. You’re a great writer, my English major friend:-)

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