How An "Ear Infection" Changed My Life
It was just supposed to be an ear infection.
That was why I asked my mother to take me to the doctors on January 27, 1994. Not because I was waking up four times during the night to go to the bathroom, not because I was making all the other third graders wait while I drank a gallon of water after P.E. (only to go back twenty minutes later), not because I was turning into a royal pain-in-the-ass because of constant high blood sugars.
I thought I had an ear infection.
My mother drove me to the doctors office, and while I sat in the little room after being examined, she mentioned to the pediatrician that I had been going to the bathroom a lot. Drinking a lot. Huh. Hmmm. Hrmph.
At four o'clock in the afternoon, while I watched cartoons with my 4-year-old brother, the phone call was made. I had "juvenile" diabetes. My mother made a few more phone calls and, after arranging for our neighbor Kay to watch Eric, my parents drove me to Emanuel Children's Hospital in Portland, Oregon.
I was put in the ICU.
I threw up.
I stayed up all night, and all day. I watched the clock from my bed and told the nurses about all the activities my fellow classmates would be doing without me. Reading, math, recess.
I learned how to prick my finger. How to give an injection (poor little orange, how I abused you). How to carb count.
I listened to Dr. James R. Hansen- the most amazing pediatric endocrinologist in the county (I don't care what anyone says). He talked to me. I was the one with diabetes. I don't remember very much of what he said. My mother sat to my left. My father sat to my right. Dr. Hansen stood at the foot of my bed, and calmly explained how my life had changed with a phone call.
It was just supposed to be an ear infection.
The following week, my mother and I marched into the office, armed with Tang orange juice, an extra glucose meter, log sheets and instructions on what "hypoglycemia" and "hyperglycemia" were and what to do about it. I explained what I would be doing at lunch everyday. I demonstrated how my glucose meter works, and reassured the secretary that I was not low as the meter counted down "43...42...41...". We spoke in front of my class. Told them what had happened. I did this in fourth grade, and in fifth grade. We brought a video to show my teachers. Everyone was very cooperative and supportive, except when they made me wait until I called my mother to treat a low blood sugar. That was a little frustrating. "Don't you realize how many times I've had this happen to me?"
By middle school, everyone knew and no one cared. My parents watched me like a hawk, and I cooperated. Except for taking an insulin injection in school- that was so not happening.
I raised some money. I talked to people if they asked. I was pretty chill about the whole diabetes thing. I sometimes cried, but only when I was tired, or as we later figured out, when my blood sugar was high.
I went to camp! Gales Creek Camp. Greatest show on earth. Sang songs, played soccer (badly), went swimming, hiked in a creek. Went low, went high. Laughed about all of it. It is true what they say: we were normal.
Became a diabetes advocate at 15. I decided I wanted to go to Washington with JDRF's Children's Congress and they said yes. Designed a website. I'm on my third one. Ad-libbed a ten-minute speech in front of 300 people at a gala (there was no podium, I wasn't just going to hold the piece of paper in front of me...). Baby-sat for children with diabetes all over the Portland metro area. Parents asked me questions about the pump, Lantus, school, sports. I was like a mini-CDE. Didn't they realize I was only 16?
Went to college. It is hard. At least for me. Everyone, as always, knows I have diabetes. But they don't know what that is anymore. I didn't get to stand up in front of class with my mother and show them how my glucose meter and insulin pump work. Some have asked to show me. Most continue to not care.
I have never had a seizure. I have never had DKA. I was discharged on January 30, 1994 and never returned to the ICU.
Dr. Hansen was my endo until he was diagnosed with liver cancer in 1998. Maya Hunter became my endo. I saw him several times though, twice through doctor's appointments, once at a children's seminar and once when he let me interview him about Lantus. He and his wife Katy were named Parents of the Year at our JDRF Roses for Parents gala. That was the summer before he died.
I miss Dr. Hansen. I wish he could see me now. I wish he could see us now. He was in love with technology. He would have gotten such a kick out of the continous glucose monitor. The children- we were his reason. We were the most important ones because we were the ones who had to do it. Sure, our parents thought for us, but we felt the needles, we felt the shakes and the pains. And one day, we would be doing both the thinking and the feeling. He spoke to everyone for as long as it was necessary. He never raised his voice. It was always the same. Smooth, calm, sincere.
His dream was to use the internet to help people with diabetes, to reach out to them. But he never had the chance.
I can't be a doctor, because it's not the plan God has for my life. But I can help people with the gifts that He has given me. I will help the people that Dr. Hansen couldn't reach.
November 9, 2005 - National D-Blog Day
In Loving Memory of
Dr. James R. Hansen
11 Comments:
Thanks for telling your story and for the great tribute. And keep it up!
Dee
Oh, and P.S., if you ever want to babysit in D.C.... :)
Oh Allison,
Such a beautifully-written, heartfelt post.
And a wonderful tribute to a man who so clearly made a huge impact on your life.
He would be very proud.
Bed wetting ... ear infections ... it's funny how you don't realize how obvious it was that you were diabetic until you view that scene with coveted 20/20 hindsight.
Thanks for sharing, Allison. Lemonade, indeed.
Well, I'm not convinced the ear ache had anything to do with my diabetes. The doctor said I didn't have an ear infection. It was more like the reason why I was at the doctor's on that particular day.
Thus, it was *supposed* to be an ear infection, but most definitely wasn't.
Allison:
I had the honor & pleasure to work with Jim Hansen on JDRF's Lay Review committee.....I'm not at all surprised to read such a tribute from one of his patients..in fact, I can recall sitting with him, (talking about our shared cancer experiences), and commenting that I wish my daughter had an endo as caring & compassionate as he. Your ability to share your trials & tribulations with diabetes, as honestly as you have in this blog, are yet another tribute to Jim's memory. On behalf of his fellow lay reviewers to whom Jim meant the world, I thank you.
warmly
Renee
Allison,
I had the pleasure of meeting Jim Hansen only once. I was an 'observer', essentially interviewing for a term as a lay reviewer for JDRF.
Jim was the lay chair of the Genetics study section; he had been given the additional job of 'shepherding' me through the process. We chatted a little, and he introduced me to some members of the review team. He was there as needed throughout the weekend.
As the week ended, he invited me to share a cab out to Newark Airport. This turned out to be his last lay review session.
Jim Hansen made the weekend for me, and I made the team! I've now moved on to 'adjunct' review status (on call as needed).
Oh, for the record, I was diagnosed on October 6, 1940, so I've had a few of your exeriences (just a LONG time ago). I believe that the cure WILL happen, and in your lifetime.
Jim
PS: I'm not usually a blogger. A site like yours makes me want to reconsider that.
Great story. Touching tribute, too. You are truly inspiring, especially to someone who has already gotten through most of the "hard bits" of life (teen years, college, marriage, kids)before having to deal with Type 1... You seem to have gone a few steps beyond lemonade - lemon-merangue pie, perhaps?
Allison, I applaud your active efforts to make a difference. You really seem like a very special person. And all this by the age of 20? Keep it up!!
Thanks for visiting my blog & the link. Love your tribute to Dr. Hansen... I had a Dr. James Horner in Toledo, OH who was amazing and to whom I still compare every endo I have tried. I was actually a nanny for his children for a while too.
Wow! That was wonderful. Thank you!!!
Viv
You can't be a doctor? Sure you can! Some people don't decide to do that until they're 40 years old. You still have time. Do what you want and what you enjoy! :-)
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