A Life Hunger, or A Decade with Type 1 Diabetes

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10 years, the doctor said on the day I was diagnosed. There will absolutely be a cure within 10 years.

There is a quarter-sized indigo bruise to the left of my bellybutton, from the insulin shot I took this morning, because I decided to eat a bowl of cereal. What this means is, there is no cure. Not yet.

Today, I’ve had type 1 diabetes for one decade.

For several months after my diagnosis, my mom and I, every night, set an alarm for 3am to make sure I was still alive and would remain so until morning. Sometimes I would go to bed and my last thought would be, I hope I wake up. I was haunted by the horror stories of a bluntly named quiet death of people with type 1 diabetes: Dead In Bed Syndrome. I was 14 years old; I felt very young and very old and I still do.

There was an innocence that I lost before most of my peers, one of invincibility and frivolity and a certain freedom. I learned quickly that the things we think will never happen to us can absolutely happen to us. That no one is safe, ever, from anything. This truth is just terrible, isn’t it? And yet, so it goes.
Bear with me.

The doctors told me something else would happen 10 years after my diagnosis: I would probably start to see complications. The list of potential complications is very long and very bleak. Not right away, the doctor assured me. Not on the day (today.) But sometime. Sometime.

This ten-year benchmark has stuck with me, and I have dreaded it since I was that tiny, barely-teen sitting in a hospital bed. For most of the past decade, today has been a dark space in my mind, a place with something very real to dread. I couldn’t help but feel like arriving at it meant a safety net would be pulled out from under my feet; that I would suddenly need to strap on a Life Seatbelt. It wasn’t until very, very recently that I realized there was never a safety net, not in those first 10 years of diabetes, not before that, in my childhood, and not now. There is no Life Seatbelt. I turned 24 years old this week, and there is only life itself and my enduring hunger for it.

Every time my blood sugar is too high or low or my fingertips are numb or floaters pass my eyes, I feel all of my own fire and fight. I’ll do anything. I’m playing a game with rules that shift like the wind. I’m trying to imitate my body’s worthless pancreas while fully aware that I will never live up to it. All of this will never be enough. I am very tired and it is very endless. Yet I do it anyway, because if I don’t, I will die. And I want to live.

The most important thing I’ve learned in the past decade is this: life will bring you to your knees and you must get yourself up, because that is what there is to do here, and it is so glaringly worth it.

You might struggle to pay your bills.
Your heart might get shattered.
You might lose your mother or your brother or your friend.
Doctors might tell you that you have an autoimmune disease without a cure and they might hand you an orange-capped syringe and a cold vial of insulin.

And if they do, you must stick it in your soft arms and stomach and thighs seven times a day, every day, forever, because it means you can continue on with the rest of it. Count the carbs. Prick your tender fingertips. Take the shot even when it burns like wildfire. Take care of your wounded self.

I know how hungrily enamored I am with life by seeing it through wobbly eyes, a weak, darkened mind, and trembling limbs. I’m overwhelmed with how much I want to do and see and be. Chronic illness hasn’t stopped me; it has amplified me in ways both dark and light. It has shown me fragility and helplessness and fear. Also bravery. Also flux. There are so many possibilities on every spectrum of a thing. Anything can happen– this is terrifying and enlivening.

My first decade of life with type 1 diabetes was so many things, wild and unexpected and bright. I have no idea what the next decade will bring, but it no longer paralyzes me.Β I’m walking into it the only way there is– day by day. I know that I am still very young, and my enthrallment with life is all encompassing, and it is happening now. I don’t plan to wait it or wish it or worry it away. ThereΒ is so much goodness here.

The lovely Cheryl Strayed once wrote to someone named Johnny in her Dear Sugar column, “We’re all going to die, Johnny. Hit the iron bell like it’s dinner time.”

Now, for any of us, I can’t think of a thing more vital to do.

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28 Comments

  1. Laura August 20, 2015 / 3:38 pm

    This is a post I can definitely relate to.

    I had a very similar experience recently, as I hit 25 years with T1D (diagnosed at six). It is a scary thing to face the probability of complications rising, despite everything you do to control it. It takes a brave person to stare that fear down!

    • Sarah V. Sarah V. August 22, 2015 / 1:35 am

      And we are brave people πŸ™‚ xo

  2. Rita Addison August 20, 2015 / 6:49 pm

    Well said. God bless you with a long, happy life. It is possible but don’t expect a cure because diabetes is a cash cow for manufacturers and insurance companies.

    • Sarah V. Sarah V. August 22, 2015 / 1:35 am

      Thank you, Rita!

  3. Ally August 20, 2015 / 7:20 pm

    Wow, this is perfect! Loved every word. Here’s to many more decades enjoying life and whatever it throws your way.

    • Sarah V. Sarah V. August 22, 2015 / 1:36 am

      Thanks, Ally!

  4. mary beth August 21, 2015 / 2:44 am

    Well done. You convey the life with honestly & clarity & without apology. My daughter is 14 & in year 3 w/ T1

    • Sarah V. Sarah V. August 22, 2015 / 2:16 am

      Ah, thank you Mary Beth! Best wishes to your daughter πŸ™‚

  5. Rose schonberger August 21, 2015 / 8:38 am

    You did a good job & never give up
    I,ve had t1D since 1936 when I was not yet 3
    79 years
    I have 3 kids & 5 gr kids
    Smile
    Life is beautiful

    • Sarah V. Sarah V. August 22, 2015 / 2:17 am

      This is exactly what I needed to read. Thank you so much, Rose.

  6. Ryan Fightmaster August 21, 2015 / 9:05 pm

    Wonderfully written Sarah! Cheers to another decade!

    • Sarah V. Sarah V. August 22, 2015 / 2:17 am

      Thank you very much!

  7. Michele August 22, 2015 / 12:06 am

    Great post!! This is how I feel. I was diagnosed as an adult with type 1 diabetes 4 years ago. It never leaves my mind but I live life to the fullest keeping in mind that I need to try my best to control my numbers as I have a family to live for.

    • Sarah V. Sarah V. August 22, 2015 / 2:18 am

      Thank you! Best wishes to you, Michele.

  8. Margo August 22, 2015 / 1:29 am

    Hi. I can feel your pain. I just hit 3 decades but being on the pump for the last one has definitely improved my outlook and management.

    • Sarah V. Sarah V. August 22, 2015 / 2:19 am

      I don’t have a pump, but I have a CGM and I definitely agree that it has helped me tremendously! Thanks, Margo.

  9. Frank August 23, 2015 / 11:13 am

    Beautifully written. Happy diaversary, Sarah!

    • Sarah V. Sarah V. August 23, 2015 / 6:12 pm

      Thank you, Frank! πŸ™‚

  10. Daley August 24, 2015 / 2:41 am

    I just love your blog! Totally relatable and always well written. This is also my 10 year diaversary I hope your making the most of it πŸ™‚

    • Sarah V. Sarah V. August 24, 2015 / 10:43 pm

      Thank you! Happy 10 year to you πŸ™‚

  11. Carol August 24, 2015 / 3:18 pm

    Well written. I am a Mother of a daughter who is also passing her 10 year mild stone. I am helpless. I watch in fear and great admiration as she lives and struggles each day. I cling to Rose. She is a pioneer who braved thro with only guessing where her blood sugar was and only pig insulin to sustain her. I guess this shows we have many Moms and daughters who have learned to celebrate each day.

    • Sarah V. Sarah V. August 24, 2015 / 10:46 pm

      Thank you, Carol! I agree, I also cling to Rose, and reminders of our resilience. Best wishes to your daughter.

  12. Dana August 27, 2015 / 12:06 am

    This is beautiful, Sarah. You are one of my very favorite bloggers, d-blog and otherwise! I’ve been T1 for 21.5 years, diagnosed at 8 years old, so this post really resonated with me, especially the line about feeling so young, yet feeling so old. I’m turning 30 in a few months, and while all my friends are dreading that milestone, I feel so proud to be reaching it, knowing I’ve been working so hard to be healthy and live life to the fullest every day.

    Congratulations on your 10 year diaversary! Wishing you all the best and can’t wait to read more of your wonderful writing! πŸ™‚

    • Sarah V. Sarah V. August 27, 2015 / 12:37 am

      Oh, Dana, thank you! That is so kind. Wishing you all the best, too, and happy almost-30th birthday!!

  13. Christine September 29, 2015 / 12:17 am

    you are an amazing writer!!! it puts everything i’m thinking down in writing πŸ™‚

    • Sarah V. Sarah V. October 2, 2015 / 3:51 pm

      Thank you so much, Christine!

  14. Julia October 8, 2015 / 3:39 am

    My daughter was diagnosed at 8 and also has had Type 1 like you for ten years. Although she must have a high pain tolerance because she does not find the shots or fingerpricks painful, but does find diabetes a huge annoyance. She also thinks she is invincible and does not fear complications (though I know better). I have recently been much encouraged by the Type 1 adults who are using Afrezza insulin. I have read their blogs and they have documented the speed at which Afrezza works, much like our pancreas. Once they have gotten the dosing down, they do not run high (or if they have eaten a problematic meal and are very high, they can correct and be back to normal within an hour. Note that these are largely men who have a 1 to 50 or less correction factor). It peaks in 20 minutes and is out of the system in an hour. Can use for correction if very high as it is in four or eight unit doses. It does not behave like injected insulin four units would act more like two or three of Novolog, depending. Endos are not prescribing because they are waiting for long term users to determine if it is safe for very long term use in the lungs. Those on clinical trials have been using for eight years. I am keeping my eye on it, as I truly believe it is safe, but will still keep a wait and see attitude to be on the safe side. Afrezza is a game changer….. but we must err on the side of caution and wait a little longer. Endos will be the deciding factor in prescribing. There are many other studies with encouraging results and I believe we will see a workable cure, of sorts, in our lifetime. I also believe that in ten more years, we will have the tools to make diabetes less onerous. I am only sad this this is a disease that largely effects young children and young adults at a time when they should not have a care in the world.

  15. kyliemarie99 October 21, 2016 / 12:18 pm

    Your writing is incredibly inspiring! I was diagnosed with T1D just 8 months ago, and it has been nothing short of a roller coaster ride. Yet, you have shown me that I can not let my T1D stop me, or use it as an excuse to feel bad for myself. I must push through and I must persevere. Thank you for your hope and encouragement!

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