Wednesday, June 16, 2010

Loss in the Diabetes Community

Losing someone is always tough. But the Diabetes Community has lost some incredible men and women recently, people who've touched countless lives and brought happiness to this world while being tireless advocates in their own respective corners.

These untimely deaths can really get to those of us People With Diabetes, even though these individuals may be strangers to us for all practical purposes. Some others have touched on this beautifully recently, such as Kerri's post "Broken Rules" over at Six Until Me and Kelly's post "Sadness, Regret, Anger" over at Diabetesaliciousness. Their writing hit home and it's true those losses got to me, but honestly the most recent loss earlier this week has pushed me to the edge. It not only saddens me, but enrages me to the point of wanting to question and cry and ponder why we're all faced with this chronic condition in the first place.

Most recently on Sunday, June 14, we've lost Will Koch, a 48-year Type 1 who was president of Holiday World & Splashin' Safari near Santa Claus, Indiana. Here is news coverage from the Evansville Courier Press. Mr. Koch was diagnosed with Type 1 in his early 20s when he was in college and he was currently using an insulin pump, and some may be familiar with his amazing advocacy work with the Juvenile Diabetes Research Foundation. Each year, the Southern Indiana JDRF's Walk for the Cure was held at his family amusement park, which he had taken over from his father at the age 25. It's apparently the country's oldest amusement park, and under his leadership for 20+ years the park massively expanded with a water park and several world-class rollercoasters.

Preliminary autopsy results show that he drowned, according to the news reports. In the family pool. Reports are that his wife and kids were at a show in Louisville, but he'd stayed home to finish up some work. They talked on the phone at 8:30p.m. Sunday, and he was fine and all was well. But when they returned home after 10 p.m., they found him floating in the family pool. This was completely unexpected, not only for what it obviously is but because Mr. Koch was an excellent swimmer and had been on the high school swim team back in his youth. His family believes diabetes contributed to his death - possibly a Low from hindering is otherwise excellent swimming skills and making him thrash or sink in the normally friend family pool waters.

Now, I don't know any more than what the news reports tell me and have no insight or presumptions that this is actually what happened. But it scares the hell out of me. What if he suddenly dipped Low, as often happens to us People With Diabetes? What if he was in the pool and couldn't get out? What if he was inside, doing work at his desk, and the Low made him unaware and try to find help...

Tears are coming to my eyes as I'm writing this. What gives this damn disease the right to do this?? Why in the hell do we have to struggle each and every moment of our lives to balance it out, and sometimes it's just never good enough? What the hell did I do in my first five years to deserve this? What did any of us do, at whatever stage in life we were at? Where the hell is the cure that doctors have been promising me for 26 years, others for decades longer than that?

Again, I don't know personally and do not want to fuel speculation about what happened to Mr. Koch. It's the fear that gets to me in pondering these "What Ifs," knowing his swimming history and thinking back on my four years of high school swimming that might not matter if I end up in a pool somewhere while Low. Or near a pool while Low.

I can't stand it. Seriously. This just tears me up inside, and it makes me now want to go to sleep at night for fear of not waking up. Not want to go to pools. This emotional trainwreck makes me think about whether it's worth it to keep blood sugars in that normal range, but instead keep them higher and risk possible complications that may not ever materialize even if BGs run higher. Diabetes can be managed so meticulously each day, but so often it interferes with our lives and in these tragic cases it appears to rob our world of some of the brightest souls we've had the privilege of sharing air with. Sometimes, this all makes you want to curl up into a ball and not live your life. Because this really hits home.

But that's not what will happen. I won't let diabetes win. Despite the fears, it won't control my life and prevent me from living my life to the fullest extent possible and impacting this world in whatever way I'm meant to. No, diabetes, you won't win. You take some of us, but others will carry on in our absence. Our legacies live on, and we'll beat you. Eventually.

We will find a cure someday. Then, you won't be able to take good people like Mr. Koch and Others from us this way. But until that time arrives, we'll fight you each day. We'll Live, Laugh, Love. Because this is our life, not yours. We'll carry on the legacies of those who've gone before us, donating to the causes they advocated for and continuing that advocacy.

Mr. Koch's family asks that donations to be made to the Lincoln Boyhood Drama Association, the Juvenile Diabetes Research Foundation, or the Santa Claus United Methodist Church.

We remember him. We remember the Others You've Taken Too Soon. We Live On, for them and for ourselves despite you.

8 comments:

Lorraine of "This is Caleb..." said...

I'm at a bit of a loss. I'm reading, wanting this not to be diabetes related. Wanting that so very badly. But there it is.

I'm saddened and angered. It should not be so easy for diabetes to steal someone like this.

Thank you Michael for sharing the story as well as your feelings.

Steve said...

I meet diabetic people each week and I can see the toll it has taken on these people.

www.sellmydiabeticteststrips.com

Brenda W said...

This is really such a sad and tragic story. :( I felt the same fears while reading this and you are right, we can't let diabetes win. It scared the hell out of me too and it is so hard to look past all of the dangers that come along with this disease.

Thank you for posting this.

Saffy said...

His poor family.

It's ironic in that it sounds as though he was proactive and a 'good' T1 and here he is, gone. Not from what we normally hear in the press as being the 'typical' diabetic reasons - but ultimately a tragic turn of events.

As for the 'cure'. Hmmm yeah, we live and hope. In the meantime, we hope even more that people like Will get longer, happier lives with their families.

April Ann said...

Michael there are nights I can't sleep because of the fear that comes with this disease. Our son was diagnosed at age 13 in Feb of this year and there are nights he is afraid to go sleep. Thinking that our best may not be good enough is absolutely terrifying. We are just appreciating every moment we have and trying to make diabetes as small a part of our lives as possible. Thank you for sharing and know that aren't alone feeling that fear.

k2 said...

I'm sad about this, as well as angry - and I feel for what his family and friends are going through right now. Thanks for posting.
Kelly K

Judi said...

But there is another way to look at it. There are many diseases that steal life from people, sometimes quickly and sometimes in bits and pieces. Every diabetic today is at least lucky enough to have insulin to keep them alive. Imagine what it was like before insulin to have to watch your loved one slowly die and there was nothing you could do.

And if I die suddenly, hopefully one thing that will be said about me is, “Look at how long she lived with diabetes when she was told she wouldn’t live to see 21.” After 52 years with it, there still hasn’t been the promised “cure in five years” but at least the new developments have been for the positive. You have to have hope for tomorrow or there’s not much sense getting up each day.

connie said...

This is incredibly sad. I am at a loss for words, as a mom of two daughters ages 2 and 4 yrs. who are living with this disease it is stories like this that give me such sadness AND fear.

My heart goes out to his family.