Monday, November 2, 2015

Type 1 Diabetes looks like...

A blond boy who just finished third grade and has been losing weight. His parents think it’s from a growth spurt, but he's pale. Something isn't right.

It’s a 23-year-old woman who is starting her career in journalism and lately, she is always thirsty.  She keeps extra sodas in her drawer at work and a water bottle with her everywhere she goes.

It looks like a 6-year-old poking his finger at a birthday party, squeezing out a precious droplet of blood and then laying that blood on a test strip…waiting for the countdown, 
3…2…1... 
He wants cake. It all depends on that number.

It looks like a 65-year-old grandmother who wears an insulin pump on her hip. A pump that delivers a constant stream of insulin, a hormone her body can’t live without for more than a handful of hours.

It looks like a 30-year-old man lying in bed, not able to open his eyes. His wife shaking him violently. She rubs glucose tabs on his lips, but he won’t eat. He gets combative. He doesn’t know where he is, and he is confused. 911 is called while his wife does everything she can to get sugar into his body.

It looks like a 40-year-old man who has a few extra pounds. He goes to the doctor and the doctor reveals his test results. His doctor automatically assumes he has Type 2 Diabetes. He doesn’t do the proper tests to find out he has type 1. The pills don’t do the job. He almost dies before the truth is found.

It looks like a mother who forgot to bring her daughter’s blood sugar monitor to ballet class. Her daughter says she feels dizzy. She feeds her hoping she is doing the right thing. She would run home to get the monitor, but she isn't sure her daughter will be safe. Her daughter must leave class early, again.

It looks like an 8-month-old baby who is lethargic. He’s laying on the table in the ER and no one knows why his body is shutting down. He is in ketoacidosis. He is having seizures. His diagnosis comes within minutes of devastating consequences.

It looks like a 42-year-old mother, who hasn’t slept in 15 years. Her teenage son doesn’t want to test his blood sugar anymore. He’s burnt out. She is worried about his future; she is worried about his body. She feels responsible and wracked with guilt.

It’s a 6th grade girl, getting up in the middle of class and walking over to her glucometer on the other side of the room. Everyone stares. But she feels low and endures the embarrassment. She likes to stay in the background. Diabetes doesn’t let her.

It’s a 50-year-old man in the middle of an important meeting, and he has to pee. It cannot wait. He forgot to give himself insulin for lunch and his body is insisting on purging the extra sugar. He has to leave the meeting for a moment. His clients are unimpressed.

It’s a school principal injecting glucagon into a student who is on the ground, unresponsive from a low blood sugar. His hands shake violently. He was shown how to give the shot once. He’s scared.

It’s a 15-year-old boy at halftime, running to his parents on the sidelines for his stash of Gatorade so his body can sustain him for the second half.

It is a thousand people wearing blue at a stadium, raising funds and walking together for themselves, their family, and their friends. They desperately want a cure. The news stations aren't covering it this year.

It’s a widowed father setting his alarm for every two hours to make sure his child is safe during the night. His son has the flu. He’s contemplating going to the emergency room.

It’s the ADA offering legal services to a family whose school refuses to let their child attend because they have diabetes. It requires oversight from a nurse. They don’t have funds for a nurse.

It’s an Endocrinologist, looking into the eyes of devastated parents, telling them that their child’s body doesn’t make insulin anymore. They will have to give him shots for the rest of his life. The future they imagined for their child has changed. They mourn deeply because of it.

It is a 32 year old mother sitting on the floor in a grocery store, singing to her baby until the banana does it’s job and brings up her blood sugar up so she can walk again.

It’s a 21 year old college student injecting insulin before he eats a candy bar and another student standing next to him saying, “Isn’t that candy bar the reason you have diabetes in the first place. Should you be eating that?” The student is too tired to explain it’s autoimmune. They probably won’t understand anyway.

It looks like a father, who after being told of his child’s diagnosis, was also told that cure will most likely come in the next five years. He winces because he was told the same thing 25 years ago when he was diagnosed.

It’s a 38-year-old woman going back for yet another eye test. She’s worried about the complications from having diabetes her entire life. She’s scared to death she might be losing her vision in her right eye. She can’t talk to anyone about it. She feels so alone.

It’s a group of children traveling to Washington D.C. to personally ask the government to help fund research for a cure. They are poised. They are eloquent. The men in the offices have 10 minutes for them.

It’s two parents hunched over their checkbook. It’s either buy insulin or pay their mortgage this month.

It looks like regular people living regular lives. But nothing is regular. Every moment is touched by this disease. No days off. What is eaten, what is done, where is traveled, it is all touched by blood sugars and insulin.

The truth is, Type 1 Diabetes looks just like me.

And it looks just like you too.

But if we’ve been taught anything in our lives it is this: You can’t judge a book by its cover.

Some diseases seem invisible.


 But the effects on people’s lives are anything but.


35 comments:

  1. Thank you Meri. This was incredible.

    I (and my family) have starring roles in so many of these books that are shelved in the library of diabetes that you so beautifully described.

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  2. Soooo very well said! πŸ’—

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  3. Beautifully written. It was impossible to hold back the tears

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  4. Amen... its every second of everyday of our lives..

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  5. NICE!!! LOVE it. I felt like I was reading a book or watching a movie with various snippets of people's lives that seemingly have nothing to do with each other - their lives are interesting, but not like mine - we are far apart and tangibly so different - then POW there it is - my mind/perception gets split wide open to see that we are actually all on the same wavelength - we are one. invisibilty shields the observer, not the wearer.

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  6. Well said! I cried while reading this. So many of your examples could be me. T1D looks like me.

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  7. why? why? why I am I crying?! It looks like me, that is a powerful message. Thanks for writing this and sharing Meri.

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  8. Bawling at my desk. The last lines are the most powerful and meaningful. Just when I feel alone as a D mom and my daughter because she is the only child at her school with T1, I know we are anything but.

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  9. So painful to read...this disease has no human boundaries. I can so relate to the father and son, my 14 year old grandson was diagnosed at 2 1/2 and my son (his father) diagnosed 10 years later at the age of 37. Thank you for sharing the faces of this disease.

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  10. Very sad...but true. I'm sharing.

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  11. Very moving. I'm blogging for diabetes awareness month at the moment https://racheljgood.wordpress.com and I'd like to link to this.

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  12. Amazing!! This is so sad but so true. It makes my heart ache. Thank you for writing this!

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  13. Reading through the tears. Thank you Meri. We are many different shapes, sizes, ages ...all touched in some profound way by this disease. I've lived with type 1 for the past 60 years. It's not my identity, but it's presence has and has had a tremendous impact on every day. T1D looks like me.

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  14. Love, Love, Love!!!! Thanks!!!

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  15. You captured everything so well. Thank you so much for this powerful message.

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  16. Beautiful, thank you for this. Brought tears to my eyes for all of those fighting for their lives, every day.

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  17. Thank you Meri for opening my eyes and my heart as I was sent this to read from my wife I have just been avoiding the reality that my son has T1 and I thought that it would somehow go away, this is so far from the truth and I truly would like to say that i am sorry and I will be a full time fighter for her and my son.
    Thank you,
    Found Dad

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    Replies
    1. You've made me sob. Fight for them. Fight with them. There is no power in feeling alone.

      Together is better. Warrior on, family!

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    2. Thank you again Meri, my eyes are now wide open and I would love to get more words of encouragement for I am so new to this.

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    3. I wrote this for parents of children who are newly diagnosed. Hopefully it will serve as some encouraging words for you. Much love to you and your family!

      http://www.ourdiabeticlife.com/2013/06/to-newbies.html

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  18. Shared this on my Facebook today (with link for credit to you). Thanks for writing!

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  19. Thank you. We had hope of a sports queen in our history. Due to the bully factor or being different in sports, she does nothing. She does not want to be "different". Cry when she's told at school, she's different.

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  20. Very powerful, thank you - 6 months into my diagnosis (47 years old).

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  21. This is really touching and insightful. Thank you for sharing.

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  22. My son was diagnosed 3.5 years ago just before he turned 3. This certainly made me cry! Beautifully written.

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  23. It's a nurse waiting to do her insulin infront of her newly diagnosed patients to show them, and mom, it will be ok if you keep yourself infront of it.

    It's a husband keeping pop tarts and juice in his backpack to swiftly get into his wifes mouth when she faints on their honeymoon. He doesn't mind , and loves me anyway :)

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  24. Thank you for writing this. It's so powerful and raw and real. Mortgage or insulin is how we live around here and the stress is endless. Thank you.

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