The Diagnosis Day & The Letter I Wish I Could Give Her…

The Before
The Before.

April 4, 1983

Dear Christel,

You knew what the doctor would say when she stood in the doorway of the examining room, staring at the expedited lab work . The checklist in Time magazine you read in class a week earlier gave you all the clues. (And sweetie, you really should have been studying…) Mentally checking every box next to the symptoms, it said: “You might have diabetes.”

Now it’s confirmed, but you have no idea what that really means. Mom and Dad do however, so their crying and whispering to each other is justified. You all will never be the same.

Sorry about all that candy that you won’t be able to eat, left in the pastel-colored Easter basket and thrown away while you will be at Joslin Clinic. It’s a big bummer to be diagnosed the day after Easter. I’ll let you in on a secret: years from now, you will enjoy chocolate and candy in small quantities. Not that sugar-free crap that is a waste of carbohydrates and only makes your stomach sound like a garbage disposal, but the good stuff. You know what I’m talking about.

It’s going to be rough for a while. You and your parents are on the steepest learning curve that you’ll ever experience. There’s an expression: “Drinking from a firehose…” and you’ll have your lips wrapped around it for a good, long time. You, Mom, and Dad will sit in classes with other shell-shocked patients and parents, wondering if the universe will collapse under the weight of all that knowledge.

Eventually, you’ll get into the swing of things, and it will feel like everything is almost back to normal, except for the shots and the testing and the measuring and weighing of every.tiny.morsel.of.food. I’m telling you now: It’s not. It’s not normal, and even thirty years from now, it’s not. But I am here to tell you that it’s better.

Here are the most important things you should know:

  • That lady you will meet early on in the patient lobby at Joslin Clinic with the backpack thingy? It’s called an insulin pump. It gives you freedom: to eat when you want, sleep in, take extra insulin when you need it and less when you don’t. They get a lot smaller over the next 30 years, and you will wonder how you ever lived without it. You waited until 1999 to get one, but it will be worth it.
  • People who give you that pitying look or tell you horrific stories about someone they know with diabetes? You will quickly school them, but be nice about it. Smile when you tell them the difference between Type 1 and Type 2 diabetes (Or whatever we called it back then, because the names keep changing…) and that you know a lot of people who are healthy with this disease. Smile even though you want to kick them in the teeth.
  • You will diagnose four people in the next thirty years, because they came to you asking questions about their symptoms. (Sorry, you are not a doctor. Remember that fear of needles and blood? Never goes away.) They came to you because you eventually were not afraid to tell the world you had diabetes. There will be a time in your teens when you want to keep it a secret. There will be a time when you lie about your blood sugars to your parents and your doctors. You will regret that later. You will also regret a lot of other things, including that one night… Oh, never mind. You’ll find out.
  • Food will be an issue for you. Remember how much you like pizza and bagels? They are not your friends.  (Neither is tequila.) I’m warning you now, but you won’t heed most of this. Thirty years later, you will still try to keep your blood sugars in range when you eat these, but you still haven’t figured it out yet. (Although we are getting close. Dual wave bolus. Yeah, you have no idea what I mean, but that’s O.K.)
  • Complications will happen to you, but you will consider yourself lucky that they are ones that are “fixable”. You will also consider yourself invincible for a while, which is perhaps why the complications developed in the first place. You will feel guilty for what you did – and didn’t do – and you will hate yourself. Please. Love yourself. We have one body and I’m now trying to love it as much as possible for the rest of our long (crossing fingers) life.
  • Why? Because someday (And I’m not telling you when, because there has to be some mystery…), you will meet a funny, sweet, and sexy man who thinks that you are also funny, sweet, and sexy. And he doesn’t care that you have a chronic illness. He will stick by you when you are sick and watch over you when you are low. (OK, I’ll give you a hint. It’s not that guy you currently have a crush on. He becomes a loser who used steroids and shrunk his testes. Eeww.) (Second hint: It’s not Michael J. Fox. He’s still hot, but he’s got his own health issues these days.)
  • Diabetes technology will get better, but you won’t think it’s fast enough. Lancets hurt for a long time, needles don’t get shorter for years, and some technology downright fails. (Avoid the Glucowatch. I know it looks like a fabulous solution and you will cry when they announce it. You will also cry after you realize it’s burning your skin.) But, things will improve, and even now, I see great things on the horizon.
  • Unfortunately, one of things I don’t see on the horizon is a cure. When someone tells you a cure is only “five to ten years away…”, just nod. You will believe this for five years. You will believe this for ten years. You will stop believing, but you will never stop hoping. And that’s what will keep millions of us going in our darkest hours. Hope.
  • You don’t know any other diabetics right now. You’ll meet some at Joslin, but you won’t get close to anyone. There are camps, but your parents want you to not feel different, so they’ll send you to camps with healthy kids. To this day, I have no idea how you survived – and I’m talking about the bugs. You hate them. You still do.
  • But one day, you will know a lot of them. You will meet them via computer (Not the one Dad uses for work in the basement that you play Zork and Adventure on and create simple Basic programs…). You will meet them in person. They will welcome you into their homes and their lives. You will laugh with them and cry with them. You will share your deepest fears and they will not placate you or blow you off, because they will have the same fears. They will become part of your family. Embrace that. I wish I could have found them sooner.

Thirty years from now, you will sit in front of a computer, staring out into a rainy afternoon, grateful to be who you are and wishing you could have heard all this after your first insulin injection in the ER. I’m not sure it would have helped, but it couldn’t have hurt.

And the one thing I really wish you knew back then?

That class 30 years ago that you took at Joslin, where they told you someday you could have a successful pregnancy?

They were right.

All my love,

Christel

April 4, 2013

 

 

0 comments

  1. Chris Stocker

    My diaversary of nine years was yesterday and I totally forgot that Easter was a few days after my diagnosis and it was the first big dinner / meal that I was scared to eat after being diagnosed. I absolutely love the idea of writing a letter to the past. Great post.

  2. Andrea

    “Drinking from a fire hose”. Exact words my husband said when our 12 month old was dx 7 years ago. Great post!

  3. Bennet Dunlap

    So much goodness.

    These are my favorites of the much goodness:

    Not that sugar-free crap that is a waste of carbohydrates.
    Remember how much you like pizza and bagels? They are not your friends. (Neither is tequila.)
    Please. Love yourself.
    You will share your deepest fears and they will not placate you or blow you off, because they will have the same fears. They will become part of your family. Embrace that.

    LYMI.

  4. Rachel

    This is amazing!!!! I wish I could see 30 years in the future now and write a letter to my son who is 9 now and tell him how it use to be and how much it has changed. I love this letter!!!

  5. swis12

    Wonderful Christel – so touching and true. It’s amazing you recognized what was happening with your parents – not clear if you recognized it then but you certainly seemed to.
    This part was one of my favorites “Unfortunately, one of things I don’t see on the horizon is a cure. When someone tells you a cure is only “five to ten years away…”, just nod. You will believe this for five years. You will believe this for ten years. You will stop believing, but you will never stop hoping. And that’s what will keep millions of us going in our darkest hours. Hope.”

    Congratulations for kicking dbutt for so long and so well.

  6. Sara

    You rock! And I am pretty sure you are the first person I have heard of that has actually USED the Glucowatch (except for on Panic Room).

  7. Kathy

    It was 30 years for me on March 6th. Wonderful post 🙂

    I wish I could’ve told my 12-year-old self’s parents that it would all work out ok. Some jerk said I wouldn’t make it past 30 and couldn’t live on my own. My mom carried such guilt and fear and pain around for no reason because of that one ass****.

  8. Reva

    I love this post. What a powerful letter, know that even though you can’t give it to a younger you, its helping give hope to others right now.

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  10. Nicole Lewis

    Amazing! :). I was only diagnosed 12 years ago but my family and i always feared i wouldnt be able to have a perfectly healthy pregnancy… But… I did and my little girl is perfect. Thank you for this!

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  12. Richard's Rambling Review

    Christel, I had not seen this post, thanks so much! It is a perfect description of the emotions that we have all experienced with so many years of type 1. The perfect D, the perfect blog, the perfect blogger! You say we can share your blogs, so that is what I am going to do, now.

  13. Bernard Farrell

    A wonderful post Christel, so much learning along the way. Hopefully we’ll be using artificial/bionic pancreases within the next 5 years. That’ll make the waiting time seem much easier.

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