Jeff Neitzel and I connected on Twitter within the last couple of months. Jeff and I have a shared love for taking our chronic disease journeys as they come and maintaining a [perhaps sometimes annoyingly-so] positive perspective on life with invisible illness. Most times when you ask Jeff how he is doing, the answer is atypical but one I love: “Shiny” :] (He’s also taken to my use of square bracket smileys, which makes me smile!).
Jeff graciously agreed to write a blog post about some defining moments in his Type 1 diabetes journey, and I am thankful for his willingness to share candidly some defining points from the travel map behind him in his type 1 diabetes journey of 28 years . . . and counting!
Thank you very much, Kerri. Your asking me to write this has helped me rediscover valuable memories that I might have otherwise forgotten. I’m truly grateful.
For the record, I was diagnosed with Type 1 Diabetes on Tuesday, March 6, 1984 in Mooresville, IN, USA. I was 13 years old at the time. Fortunately, I have an older sister who diagnosed years before. So, my mother and I knew what was going on before we ever went to the doctor on that particular Tuesday. If I may, let me tell you that I am a lucky man. I doubt I’d be where I am today without the help of so many great people over the years.
My diabetes is a friend who has given me a lot over the years. I truly count it as a blessing in disguise. See, my diabetes and I are on a journey together. In many ways, this is a journey without a predefined destination. It is a journey of empowerment, hope, and love.
I guess you could say… It’s not so much about the where I go but how I choose to get there. The journey itself is the destination. Are we there yet? No, not yet.
Now, I’ve said it before… My diabetes life has been nothing short of a whirlwind. The memories I have of my early diabetes days are pretty vague. There are those events that are unforgettable though. Here is one of them.
The only diabetes camps I remember going to were bicycle trip camps that were organized (in part) by Sam, my diabetes doctor. They were both trips around Michigan with a ride across the Mackinac Bridge and a break day at Mackinac Island on one of them.
The riding and camping during these days was exciting, fun, and full of learning. To this day, I still remember my most important take away from all this–and that is . . .
Don’t hide your diabetes. It doesn’t have to be invisible. Be proud of it because it’s part of you. The visual take away in my mind is symbolized by all of us outside a shop on Mackinac Island checking our blood sugars, taking our shots, and all that other fun diabetes stuff. Yes, people could see this bunch of kids with diabetes doing our thing and having fun while doing it. Unfortunately, I don’t have any photos of this. Alas, it is still a vivid and important point of diabetes empowerment for me. I’ll carry it with me always.
Indiana and College
I don’t want to bore anybody with details of my first go at college stuff. So, let’s just say that it was an interesting challenge not just for me but for my family as well.
There are a couple tidbits that are worth sharing in any case. One is… I wouldn’t recommend getting low in public, in your residence, or in your class(es). My mom and my doctor had to make the college see the light on one occasion to stop them from kicking me out for getting low.
The other is… In retrospect, I know now that I was dealing with depression at the moment in time when I jumped off the college ship. See, I had a revelation back then that I wasn’t going to be around forever. Rather than learning about the world from books, I decided it was time to leave and forge my own path in the world by just doing it.
It probably wasn’t the best decision in the grand scheme of things, but it was required for me at the time. I’m a better person for it today.
Boston and Beyond
Now, college was worthwhile for sure. I’d return to complete my degree eventually.
My Boston years (from about 1994 to 2000) though… They changed me absolutely in more ways than I can possibly convey here now. Without going into the day-to-day of my life in Boston or the work I did there, I will say that it centering myself around this amazing city is one of the best decisions I’ve made in my life (to date that is).
The thing that was/is most valuable to me about Boston is the amazing friends I made while I was there. Even though I’ve lost contact with many of them, there are a few people I still know from those days.
For the most part, Boston served as a jumping off point for my travelling via train, plane, bus, and bicycle. This included trips to various parts of Europe, to Canada, and across the USA on at least two different occasions.
One example I’d like to share is one of a train derailment. Having ridden my bicycle from Boston, MA to Albany, NY (summer 1994), I then caught the Lake Shore Limited bound for Chicago. Long story short, the train derailed near Batavia, NY on the way to Buffalo. 102 people were injured, but I wasn’t one of them. Regardless, this was just another example to me of why it is so important to appreciate what we have in this world. I’m not talking about material possessions either. I mean the power of the connections among people. I met so many fascinating people that day. People who were different from me but like me. Knowing that we are all connected in one way or another despite our differences is so important to me. That day just illustrated in a very powerful way.
So, where was diabetes during these travels? It was right there with me every step of the way. This whole span of my life was about much more than diabetes though. It was about my love of people, geography, and cities. Diabetes was there as my companion, not always the most cooperative companion mind you. Still, diabetes made and still makes my adventure more fulfilling in more ways than I know how to say.
It simply allows me to appreciate more than I might otherwise be willing to appreciate if you get my meaning. Things are just shinier for me when they’re good. It’s the blessing in disguise thing ya know.
In my mind, it’s all about the journey and connecting the dots of my life with those of others. So far, I’ve gone from Indiana to Boston, Beyond, and back again. I’m not there yet. Diabetes will not stop me. So, my journey continues.
Diabetes is a journey with many facets. Those facets include the mental, the physical, and the spiritual for me. It is a difficult journey for sure, and I’m not always so shiny. That said, we (my diabetes and I) try to get up every single day and embrace the imperfection of it all. Sure, we fail sometimes. That’s life though in my estimation.
Anyway, we choose to keep on moving… Are we there yet? No, not yet.
Jeff blogs at Betespora, an engaging chronicle of his “D-Quest”, reflections and some philosophizing thrown in for good measure–I can’t speak for others, but in my journey reading back, it constantly challenged me to question myself and my world . . . and DO something good! I haven’t been following Jeff’s blog for long, but it quickly became among my favourites out there.
Jeff has a degree in Information Systems and has special interest in Open Source programming working [and speaking in what I am convinced is a foreign language!] on the v6shell project :]. Jeff can also be found on Twitter at @betespora and @v6shell.
3 thoughts on ““a journey of empowerment, hope and love.” – jeff’s story on type 1 diabetes”
I just wanted to let you know that I am truly honoured Kerri! May each of our journeys continue and be as shiny as all get out too! :]
Thank you so much, Jeff!
I hope that our paths connect in person one day — and hopefully there are some bikes involved! [Not that I am much of a cyclist, but hey, anything could happen!! :]]. Until then, I look forward to the continued friendship, engagement and inspiration on Twitter! :]
Back at ya, Kerri!
Well, you know how this life stuff is… Expect the unexpected. Regardless, here’s to golden journeys for us both (and our mutual friends). In the meantime, there’s always Twitter! :]