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December 11, 2009

When I was 10 years old, I wanted to run away from home. I don’t remember why I wanted to run away. I was a young, very young, and probably upset at something my Mom and Dad wouldn’t let me do or maybe it something they made me do. Like clean my room or something, because what 10-year-old wants to clean their room?

Anyway, I remember drawing up a map of my house and deciding I should leave in the middle of the night with a backpack. I could hitchhike and start a new life somewhere fresh, like Wyoming (I’ve always had a fantasy of living in a town of 200 people, working a roadstop diner. Strange dreams for a girl who lives in the largest city in the country).

But I also remember realizing that if I ran away from home, I probably wouldn’t be able to get a job, because I was a kid. And if I didn’t have a job, I wouldn’t have insurance. And without insurance, I would have my insulin or test strips.

And I would die.

I couldn’t afford to keep myself alive.

Seriously, what kind of kid considers insulin and test strips when devising a plan to run away?

But that’s what growing up was like. That’s what it has always been like. I remember when I first noticed on my Minimed insulin pump that when I had a LOW RESERVOIR alarm that it would actually count down the time until the reservoir would be empty, based on the amount of insulin you take per hour in your basal rate. I remember thinking it was a bit like a countdown to death, because without insulin, I would start to die.

Not that we’re not all dying. I mean, that’s a given. Everyday you are getting closer and closer to the day you die. But that’s just because we’re mortal and all things die. No one knows when that will happen, but we know it will. (Wow. I am morbid.) A couple of years ago, I asked my friend Christine how long a person could live without insulin. If I just suddenly decided to stop taking it and did absolutely nothing at all to help myself. She said about three days.

That’s a much more specific timeline.

This morning, on Twitter, there’s an article floating around from a man named Robert Steinback (at first, I thought it was Steinbeck and I wondered by the author of Grapes of Wrath who has been dead for 40 years was writing about diabetes in a Florida newspaper, but I digress). He has had diabetes just a bit longer than I have and like me, has been relatively healthy with diabetes – as healthy as one can be with a chronic condition such as this.

And he lost his job a year and a half ago. So now he’s on COBRA. Except COBRA is going to run out in February. And no one wants to give him a job so he can have insurance, and no insurance company wants to give him insurance because he’s expensive.

I mean, what the hell kind of society do we have set up where people are like NO ONE WE DON’T WANT TO KEEP YOU ALIVE BECAUSE WE LIKE OUR SUMMER HOMES IN THE HAMPTONS MORE THAN YOU!

Sometimes I think the people who came up with these policies are so evil that not even the Devil would want them.

We all know someone who is struggling in this economy. For me, it’s Lee Ann Thill, who is also almost up with her COBRA coverage. But for her, she is married and has the option, at least, to buy into very expensive insurance.

Robert doesn’t even have that option, because he isn’t married.

A long time ago, I remember watching a movie about a French man who married a woman to get a Green Card to stay in the United States and have a better life here. Now there are people talking about marrying so they can get an Insurance Card so they can simply have a life.

Living should not be something I need to ask someone for permission. A healthy life is a right, not a privilege.

When I was getting ready to graduate from college, a lot of my friends were discussing their options for post-grad work. Some people were going to grad school. Other people were packing up and heading to Europe for backpacking. It was the 22-year-old’s version of running away. One girl I know just quit her job 3 months ago to backpack around Europe. When my mother was 22 years old, she also graduated from college and spent a few months in Europe. I wanted to do this too. Financially, I would have been able to do it. But I couldn’t. I wouldn’t have had insurance anymore – because I would have been kicked off my parent’s policy for not being in school anymore – and I need insulin. Throughout high school and college, my mom always told me, “You need to get a good job. You need to get health insurance.”

Instead, I got a job. With health insurance. I managed to make things pretty fantastic for myself, living and working in one of the greatest cities in the world and generally being really happy with things. Because that’s what I do: make lemons out of lemonade. But I never forget that I gave up Europe for my diabetes, and that my existence is primarily reliant on my employer, my health insurance that I receive through being employed, and those tiny bottles of clear liquid that have taken up residence in my butter compartment.

  1. December 11, 2009 3:42 PM

    Once again, you write what I have thought too. I remember being a kid and thinking “Boy, it’s a good thing I have no desire to run away. Cause how would I get my insulin and test strips?” And, I, like you, didn’t have the option to continue school, or go “find myself” in a foreign country. Currently, I would love to go back to school to be a nutritionist. But I can’t. Because I would have to quit my job and I need insurance. I am also half-way through my master’s degree in education. But I can’t finish it because I have to do a semester of full time student teaching…which I can’t, because of my job.
    So, diabetes is in the way. All the time. 😦

    • December 11, 2009 3:54 PM

      Yep. I am so with you. Hopefully you’ll be able to get the full-time teaching in sometime soon. I know you’d be great at it!

  2. Arielle permalink
    December 11, 2009 3:50 PM

    This is what frustrates me to the point of rage about the health care debate. Because for every story like this, whether it’s on the radio or the internet or the newspaper, the response from the anti-public health care folks is always some variety of, “Well, you should…” You should get a better job. You should work for the government. You should move to Sweden. So what are you saying? (You being the anti-health care person.) That if I cannot, or choose not to do those things, I am therefore giving up my right to be alive?

    “Oh, it can’t be that bad/Don’t be so dramatic/Just go on a diet and walk 30 minutes a day.” I don’t understand, I truly don’t, the lack of compassion it must take, not only to not be able to put yourself in my position, and that of MILLIONS of people with diabetes or cancer or asthma or anything, but just literally not to CARE.

    And this is why I rarely talk about this stuff, because it turns into a rant. I like to think that people are fundamentally good and caring, and the health care debate forces me to admit that many of them are not.

    • December 11, 2009 3:53 PM

      I rarely talk politics on my blog, but this article really got to me for some reason. And the “runaway” story is something I’ve always wanted to share because I remember so vividly the phrase “I can’t keep myself alive” going through my 10-year-old head. It is frustrating and heartbreaking, but it’s also nice to know that there are other people out there who believe like you, and that we’re not just talking to an empty room.

  3. Brittany permalink
    December 11, 2009 4:21 PM

    i ❤ you.

  4. December 11, 2009 4:41 PM

    It’s a very scary concept that our lives depend on insulin. Our insulin supply depends on money. Our money supply depends on insurance and income. Go without income and/or insurance, you can see where the equation will lead. It’s not fair and getting to manage diabetes is NOT a luxury!!! My heart goes out to those who are suffering and I many times wish there was something I could personally do to help them. Good post.

  5. Sarah permalink
    December 11, 2009 5:23 PM

    I remember those days! Except mine were the teen years after having a drivers license. I was probably a Sophmore in HS, and I got really upset because my parents didn’t like my friends and I wanted to move in with one of them. The only thing that crossed my mind was “They’ll probably cut me off of their insurance if I leave home. Crrraaaap!”.
    I remember another time where my senior class was planning their trip. We weren’t going to do something like a cruise because that would have been way too much money, so we were going to go to Disneyworld. What stopped us? My diabetes. My parents wouldn’t let me go because I was diabetic and they wouldn’t be there with me. So, my class didn’t go. We ended up going to the state line to Carrowinds instead.
    Its irritating to know we are bound by diabetes as much as we are. We try to live as free and uncomplicated as possible, but it’s still so much a part of our lives.

  6. December 11, 2009 11:26 PM

    Awesome post! I “contracted” T1 at the ripe old age of 27, but think it is so sad that a child should have to think such thoughts. I even think it’s sad that adults do. We recently learned that the healthcare coverage we were counting on (and was promised) in retirement will drop me as soon as my husband retires or becomes eligible for medicare. Since he is 10 years older than me, that is a bit of a problem. They just up and decided to do that. So, unless things change, I will need to have a job with insurance benefits (translated…with a big company) between the ages of around 55 and whenever I become eligible for medicare. I’ve done the big company thing for over 20 years already, and my niche is working for the smaller ones and not-for-profits. I just hate it that “d” has the power to dictate that aspect of my life as well, so I’m not giving up on us seeing some changes.

  7. December 11, 2009 11:28 PM

    great blog. I agree… Why dont we want to take care of each other???

  8. December 12, 2009 12:23 PM

    My mom received a kidney transplant 5 years ago and since she is disabled she has insurance through the government. They just took away her prescription plan which covers her meds which are over $1,000 a piece…for multiple meds that she NEEDS to live. I truly think that the government would rather let the “expensive” people die, rather than take care of them with coverage.

    p.s. my mom has diabetes and we keep the insulin in the butter compartment too! ❤

  9. Lili permalink
    December 12, 2009 5:41 PM

    I also feel this way when people start talking about those great “old times” where we didn’t have running water etc. and how much better it was back then. Or people saying that I carry around too many devices and technology, and attaching some negative value judgment to that. Those things are keeping me alive, thanks.

    I’ve been on COBRA twice now. The first time I exhausted it (and had to go into the high risk pool). The second time my husband finally was able to get insurance about five months in, although the coverage wasn’t great. It’s the first thing I think about when I plan for a vacation, think about moving or changing jobs, plan for the future.

  10. Betty Jackson permalink
    December 12, 2009 9:36 PM

    I hear you Allison, these are the realities for us who live with D. With adulthood comes responsibilities and for us there is D.

  11. December 13, 2009 1:11 PM

    I remember growing up and watching Gilligan’s Island and thinking to myself how screwed I would be if I was stranded on Gilligan’s island because eventually I’d run out of insulin and die. And whenever I would get asked “if you were stranded on a deserted island, what is the one thing you’d want?” Well, that one’s obvious! Insulin! Oh, and needles would be good too.

    Sucks that kids with diabetes actually think about this stuff. It’s kind of a bummer. Not that being stranded wouldn’t already be a bummer, but still . . .

  12. December 13, 2009 9:21 PM

    Wow. What a great post. I can’t imagine having that kind of pressure and to be aware of it at the age of ten. This health care stuff is a trip.

  13. Jamie permalink
    December 14, 2009 1:59 AM

    I loved this post, and as sad it is to hear that so many other people are being hurt by the healthcare industry, it is a little comforting to know I am not alone.

    I just turned 19 on the 1st, and my parent’s insurance won’t cover me after the first of Janurary. As much as my mom likes to complain that I was born at 4 in the morning, those 4 hours after midnight insuring that I wasn’t born in Novemeber gave me 31 more days of insurance before I left high and dry.

    We’re hoping I get approved for medicare. I am a full time student who works less then 15 hours a week as a work study student for my college. I can’t work more then that for the school, I have too many credit hours to take on a full time job, but where is my insurance going to come from?

    It’s a nasty, vicious, dirty cycle that ignores the common good and it needs to change. 😦

  14. December 16, 2009 1:46 AM

    As frantic as I’ve been about my own situation with 2 1/2 months left before COBRA runs dry, I’m grateful to have the option of being added to Jason’s plan. Even though it’s more than we can afford, paying for supplies and medical services out of pocket would obviously be worse, and given the choice, I’ll go with the lesser of two evils. I felt so defeated reading that article, defeated for myself, defeated for Mr. Steinback, and defeated for every last one of us who really is just a lost job, or lost spouse as the case may be, away from being uninsured. In the end, we’re too expensive, and we’re the most likely collateral damage for maintaining the system as it is. There was actually a wonderful article on the Huffington Post today about how the health care system is designed so that disease and sickness is more of a commodity than wellness, and thus there’s no real incentive to change it – since incentive in America comes in dollar amounts, not human life. I wish I had a sliver of optimism that there will be some change that will affect us positively, but realistically, I don’t see it happening. Too many people who have no personal experience depending on expensive medical care to live have zero empathy or compassion for those of us whose lives are at stake.

    As a happier aside, that last line put a big grin on my face 🙂

  15. December 17, 2009 8:06 PM has an interview with Robert Steinback on health reform:


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