Fifteen-Year-Old type I told, "We are not a hospital or charity"
Many years ago when I was in high school my best friend was diagnosed with type I diabetes. Mike took shots, carried insulin and needed to eat when he said that he needed to eat. Aside from those considerations, he never really spoke about having diabetes. We hung out together constantly, had meals, went on double dates; saw movies and the rest of what you would expect friends to do together. I was around Mike and his diabetes almost all of the time.
Yet I didn’t know much about it.
Mike had so many diabetes related decisions to make and even though we were often together when he made them, I was lost when Arden was diagnosed. As the days after her diagnosis slowly turned into months, I never found myself thinking, “no problem, I remember this from Mike...”. Nothing that I ever saw, heard or experienced with my friend prepared me to thrive or even merely exist with type I diabetes and I was as lost as the next person when it came to really understanding any of the intricacies of type I. It’s my experience with Mike that taught me to be patient with people who don’t understand diabetes. Sure, I still get annoyed and I certainly wish that the average person knew what Arden may one day need them to know in an emergency, but it’s just not reasonable to expect people who don’t live with type I second by second to understand it in a meaningful way.
Yesterday morning I saw a FaceBook post that Mike ‘liked’, it told the story of a fifteen-year-old boy with diabetes who was turned away at his local 7-Eleven when he asked the cashier to help him. I was instantly struck by the story and reached out to the boy’s mother, Katie Franklin. I asked Katie to share her families experience in the hopes that it would promote advocacy and awareness.
Tommy was riding his bike Monday after school when he experienced low blood glucose and because he was without money or supplies, he smartly went into a nearby 7-Eleven to ask for help. Katie tells me that Tommy asked the cashier for a fountain soda or candy because he has type I diabetes, his blood glucose was low and he feared that he was going to pass out. Katie says that Tommy doesn’t normally get so low that he feels this way so he knew that he was in a dire situation. The clerk, who was at a disadvantage because of a language barrier, declined by saying, “No”. The boy persisted and even showed the cashier his Medtronic insulin pump as proof of his need but the reveal of the pump didn’t change the clerk’s mind. Tommy left the store, rode his bike about a block and then called his mother at work; she rushed to him and found Tommy lying on the ground next to his bike. Tommy ate and felt better in time.
Katie drove directly to the 7-Eleven and asked to speak with the manager. Katie said that the manager told her that “we are not a hospital or charity” and when she tried to tell him that all her son needed was a twenty-five cent piece of candy and that it may have meant his very life, the manager walked her down the candy isle to show her that they don’t have candy that inexpensive. Katie, realizing she wasn’t getting anywhere with the manager, got the number for the corporate office and left the store. She was so incensed that she called the office from the store’s parking lot and spoke to the District Manager who promised to make sure that his stores understood type I better.
Katie was surprised when the owner of the 7-Eleven called her the next day because it wasn’t the DM that informed him of the disaster at his store. The owner found out about the incident the same way that I did, on the Internet. It’s important to be clear that the owner of the 7-Eleven was horrified at how his employees treated Tommy and his mother. Katie tells me that she found his apology to be sincere and that she is comfortable that he will take steps to educate his employees. The owner explained to Katie that he owns a number of 7-Elevens and that he will make certain that they all understand what diabetes is and how he want’s his employees to react when someone shows signs and symptoms. He even agreed when Katie suggested that a donation to the JDRF would go a long way toward making her feel better about what had transpired.
I know that Tommy’s story is horrifying to those of us who live with diabetes. It’s frightening to the parents of children with type I and I can only imagine how infuriating to the adults reading this who live with diabetes - but that’s not why I wanted to tell Tommy’s story.
I want to tell this story for two reasons. First because I know, thanks to my friend Mike, that everyone can’t understand type I diabetes but also because I think that we as a community are helped when we are remind periodically of that fact. I can personally see how the cashier, whose grasp of English and no experience with diabetes may have been confused when Tommy made his plea. I can’t however find a way to excuse the manager’s insensitivity and apparent lack of human kindness. I was heartened to hear from Katie that the storeowner understood what she was saying to him and offered what Katie characterized as an appropriately contrite apology. I say heartened because the owner’s reaction tells me that this story can find people who will be changed by it, that this story can make advocates out of people who previously didn’t understand type I diabetes.
The second reason that I think that Tommy’s story is valuable for us to hear is because of the reaction that some people online felt comfortable thrusting in Katie’s face. Please understand that her story was met with a ton of loving support but there were still some people that took the opportunity to chastise Katie for what they considered to be poor management of her son’s type I. What Katie said to me regarding those harsh comments needs to be heard by the parents of younger children living with type I. People told Katie that her son should never be without glucose and money and that it was a failing of her parenting that he had neither with him on Monday. Not having supplies probably seems foreign to the parents of small children because we tend to always have supplies with us but Katie told me a story that sounded all too possible and I can’t say that it won’t be all of our stories at some point in our lives. Tommy was diagnosed when he was thirteen and he’s only been living with type I for two and a half years. Katie has tried giving him money for emergencies, but he spends it. She’s tried to give him candy to carry, but he eats it... Tommy even likes the taste of glucose tablets so they get consumed as well. Katie is traversing a rocky road with her son and I can’t understand or condone anyone that would harshly judge her efforts. It can not be easy to help a fifteen-year-old boy come to terms with what diabetes demands of him. Shame on anyone who felt pompously that they knew better and then took it upon himself or herself to chastise Katie.
It’s annoying yet understandable when the world at large doesn’t understand our lives but it’s a totally different feeling of sadness to learn that people can so easily, especially in a community like the one we all share, turn on another.
If we can’t give each another the benefit of the doubt and extend the kindness that we all know our lives need and deserve, how can we possible hope for that kindness and understanding from the populous at large?
I know that this was a long and heavy post so I want to end it with a story about Tommy that I think we can all appreciate and cheer for. Tommy diagnosed himself with diabetes. At thirteen years old he took to the Internet to search for his symptoms. Tommy told his mother that he wasn’t feeling well but before they could get to a doctor and driven by what I can only assume was the discomfort that a BG of 795 brings to a person, diagnosed himself during a school day and then posted on FaceBook that he thought he had type I diabetes. His mother saw her son online when he shouldn’t be, read his post and took him to the hospital where Tommy’s self diagnosis was sadly confirmed. I love the idea of a confident thirteen year old advocating for himself with the tools that he has at his disposal, almost as much as I admire a fifteen-year-old boy having the nerve to walk penniless into a 7-Eleven and ask for help. I think that Tommy has a lot to look forward to in his life, not just as a strong advocate for himself, but I have a feeling that his story will create advocates where there previously were none and renew the passion in those already advocating so hard. Thanks to Tommy and Katie there are a few less people in the world today who don’t understand.
What do you want to tell diabetes
This morning on Facebook I found myself wishing that diabetes was a 'someone' instead of a 'something' so I could tell it to go f#^& itself for keeping me up all night. I had a particularly long day working around our house in the heat yesterday and today I find myself with more writing to do than time in the day - I really needed that sleep.
I must admit... venting about it online felt good!
In fact, I liked the experience so much that I thought you may like to tell diabetes off and start the week with a clean mental palate too. So feel completely free to leave any message that you may have for diabetes in the comment section of this post. Don't worry about language or tone... let it fly. Usually, I love to see who left comments but today, wanting to be anonymous is completely understood. I hope that you find it as cathartic as I did to say, "fuck you diabetes".
Stress, back pain, Howard Stern and my friend Mike
Stress thrives on two truths:
1. We all have stuff.
2. We all think we handle our stuff, most of us don't.
Almost twenty years ago I heard a noise emanate from my lower back that I will never forget. It sounded like an explosion and tearing flesh combined. It was so loud that the people around me heard it. I heard it with my ears but also from within my body. It was terrifying and it hurt like hell. The next 12 months were doctor appointments, days spent incapacitated, lost work time, I was a slave to the pain in my back.
One day a close friend brought me a book. I'll never forget what he said, "I heard about this on the Howard Stern Show, Howard says it made his back pain disappear in a week". I remember joking that I'd probably be better off hitting myself in the head with the book. Right before my friend left, he wished me well and commented that, "it couldn't hurt anything - you're just laying here anyway, read it".
I was a man in my early twenties and I sincerely believed that my life was over. I could barely move most days and when I was able to eliminate the pain, it would only come back twice as bad the next day.
So I read the book...
I want to be clear when I say that my back "hurt" I mean it was as if twenty men had their hands wrapped around my spine and they were trying to squeeze the life from me. I mean that if I moved too fast or the "wrong way" that it would have been less painful to stab myself in the eye with an ice pick. I mean my back hurt like I had been struck by a thousand trucks and somehow didn't die - it hurt in a way that I hope none of you ever experience.
I read the book, it was a short book. I read it and I did as the author asked - I thought about my stress and where it came from, I took a leap of faith and threw myself into something that a year earlier, I would have mocked openly. I read the book and one week later my back didn't hurt anymore.
After over a year of incapacitating pain, I read a book and stood up like nothing had every happened. Three months after I was told I needed spinal surgery, I just stood up and it didn't hurt anymore. I cried when I realized that the pain was gone - like a baby.
Some will say I was never really injured. I was there when it happened, everyone heard my back exploded. I can tell you that I did injure myself that day. That the pain worsened as you would expect, the injury progressed as the doctor told me it would. I had a text book back injury - I promise you.
Yesterday marked six weeks of my back "hurting" again, I wasn't laid up but I was in a great deal of pain and not moving well at all. Stiff, partially incapacitating back pain. I had been carrying it for weeks. I knew from reading the book that I wasn't injured but I was in pain. Perhaps it's time I tell you more about the book.
I'll keep it simple. Stress is bad for you and your mind doesn't want you to experience long bouts of it. When you deal with your stress by not dealing with it, your subconscious mind is still processing the turmoil that you refuse to outwardly feel. Your brain, for the lack of a technical explanation, gives you something else to worry about, to pay attention to - it distracts you in the only way that it can.
I wonder why it doesn't make you feel like you just ate chocolate while having an orgasm on a warm breezy day?
Some get headaches, some back pain, we all experience the distraction differently. Here is why I believe mine is back pain. I was a bright twenty year old guy in a terrible job that I could not figure out how to get out of. One day I lifted something and legitimately injured myself... that was all my mind needed, it now knew how to get me out of that crappy job even if I didn't. My brain did something to me that forced me to not go to that job ever again, it forced me to find a different path. It made me sit down and think about my stuff.
Back to yesterday. I was in bad shape and getting worse but instead of calling a doctor I forced myself to reflect on the last two months and figure out what was bothering me. Not the stuff I know about. The things that concern you but you are dealing with, those don't effect your stress level in the same way as an unexamined issue.
Now just in case this all doesn't sound mystical enough, here's what happened to me yesterday morning. I figured out that I had been worried about a loved one. I don't want to give details but this person means the world to me and I am concerned about an aspect of their life. I know that I can't solve this issue and since I can have no real effect on it, I tried to ignore how worried I was. I guess that was eating me up inside because my back tightened up and when I tried to ignore the pain without finding it's source, it worsened and persisted for weeks. I tried telling myself that I wasn't injured (a trick that often makes the pain dissipate if the underlying cause isn't too serious) to no avail. I decided that I couldn't carry the burden of this concern without pain so I told the person that I was worried for them, that I knew it wasn't my place to worry and that I loved them and would do anything to help. My back stopped hurting by the time I got the words out and it has not hurt since. Six weeks of pain and tightness disappeared in moments.
I know that sounds a bit crazy but it's the absolute truth. I wouldn't have believed it either if I wasn't forced to all those years ago. Twenty years later I owe my life to that little book and to the man that wrote it, Dr. John Sarno. Dr. Sarno has written a few books on the power of the mind since then and I've read them all. They have relieved me of pain, hay fever and other stress related ailments. I'm sharing this with all of you not because I want to sell a book for the man, he's doing pretty well but because the world of diabetes is a rather stressful one. The next time you get a phantom pain, start feeling sick or begin to get overwhelmed, I suggest that you find a quiet place, come to terms with what it is that you are worried about and voice that concern.
Most people think that they handle stress well - those are generally the ones that don't. It's the screamers and the criers, the complainers and the talkers that handle stress the way it was meant to be. Those of us who put on a strong face and press on - we are the walking heart attacks, the back pain and headache people. Turns out that just like most things in life... the simple answer is usually the correct one. Let your stress go! If you don't have a person, get one, get a Twitter handle or a diary, pay a therapist or talk to a wall - just don't keep it inside. Sharing helps, it's why blogging is such a wonderful release for patients and caregivers, it's why your mother told you to not keep things bottled up inside.
I'd like to thank, in no particular order: Dr. John Sarno for writing such amazing books, Howard Stern for reading them and telling the world and my friend Mike for working in a book store when we were youger. The three of you saved me from a miserable existence.
The paperback that saved me!