The Candy in My Pocket with John Robert Wiltgen

I had a chance to catch up with John Robert Wiltgen, the fascinating international award-winning JRW Design founder. I’m enjoying his recent blog posts and stories and want to spread the word in case you might enjoy them too.

John was diagnosed with diabetes at 8 years old. He’s lived with diabetes for more than 53 years now and has faced many challenges. I enjoy his positive attitude and how he continues to charge forth and do what he loves. Over the course of his life, he built an incredible design business. He’s won more than 40 major design awards, and his work has brought him from Chicago’s Gold Coast to Africa’s Ivory Coast. Now retired, he’s telling more of his story with diabetes as he and his husband plan their next adventures.

Picture of John in a suit sitting on a fancy chair in a beautiful house that he designed.
John in one of the houses he designed

Interview with John Robert Wiltgen

(Scott K. Johnson) – John, your positive attitude seems to be a key part of living with diabetes for you. Can you tell us more about that? Have you always had such a positive attitude? When did you realize it was important for you? How did you/do you nurture that positivity?

(John Robert Wiltgen) – I have developed an attitude towards life that goes something like this…

It doesn’t matter how shitty you think your life may be – the truth is, in 99% of the cases, there are a lot of people on the planet who are much worse off. I know this. I have been to Africa 13 times. Yes, I have been a type 1 diabetic for 53 years – that by itself has not been a walk in the Tuileries Garden (Paris). And then there are all the complications. A kidney transplant (which solves one problem but causes a bunch more). Multiple heart attacks (the third one needed two medicated stents installed). I had half a leg chopped off – although I did lose 12 pounds in an hour and a half! But I’m not recommending it as a new-age diet. And, I am legally blind which enabled me to learn a lot of Helen Keller jokes. From the antirejection drugs I have been taking because of my kidney transplant, I came down with three different kinds of pneumonia all at once. I was in intensive care for 21 days and almost died. Then, I got appendicitis. It ruptured in the hospital but they could not operate immediately because I am on blood thinners. I almost died. And, most recently, I had COVID and almost died. The point is – every day is a gift.

There are still a lot of things I want to do and one way or another I will figure out how. My bucket list is the size of a 55-gallon drum.

Life is about choices. We can choose to be depressed OR happy. Honestly, it is so much easier to be happy and more fun. Everyone has a story. We could all be depressed. Particularly in this last year. The great thing about depression is you can take it with you. Go on a trip. See America. Take a cruise. Climb the pyramids. Our friends and family would rather be entertained and made to laugh at our stories as opposed to making excuses why they cannot see us.

As the great comedian Phyllis Diller once said, “A smile is a curve that sets things straight…”

Well, maybe not everything!

(SKJ) – I’m excited to have your voice in the choir of stories of life with diabetes. What role does storytelling play in diabetes for you? And what called you to jump in now?

(JRW) – For forty years I was preoccupied with building a business while fighting the complications of diabetes. When I turned 57 I decided it was time to retire. There were / are other things I still want to do – other than work and visit doctors. I have been writing my memoir hoping it will be inspirational and, of course, irreverent. It is really about creating your best life possible and staying positive, despite terrible circumstances. When I finished the first draft, “The Candy in My Pocket” was 160,000 words – not quite War and Peace but almost the length of Atlas Shrugged. My editors advised I cut it down to today’s industry-standard memoir length of approximately 80,000 – 85,000 words. Half of what I wrote. It took more time editing than writing the first draft.

Now it chronicles my dramatic days as an international, award-winning designer commissioned by celebrities, world leaders, and other luminaries; my debilitating and death-defying battle with type 1 diabetes; and my struggle to hold on to myself and those I cared about along the way.

The purpose of this manuscript is to help people remain optimistic in the worst of times – no matter what personal or professional challenges they’re dealing with. I would also like to help raise awareness about the deadly, little-known symptoms and consequences of diabetes (neuropathy, retinopathy, kidney disease, heart disease, hearing loss, cellulitis and osteomyelitis which often lead to amputations). I am a strong believer in miracles. After all, I am still here.

Currently, I’m embarking on the second half of the book publishing process… Finding an agent who can get me to a reputable publisher. In the future, if the book is published I’d be delighted to send you a review copy with the hope that you might share your reactions.

(SKJ) – You bet, I’d love that, thank you. What parallels do you see in your work as an award-winning artist and your life managing diabetes?

(JRW) –  My work was my distraction and escape from the complications that came at me one at a time, but consistently. I was diagnosed with type 1 diabetes back in 1967. At that time my parents were told I would not live to see 40. I’m 61 and I am still here. Obviously. I don’t think I could respond to you from the other side!

But back in those days, very little was known about the disease and how to care for yourself. There was no such thing as a glucometer or continuous glucose monitor, or insulin pump. There were no disposable needles. My mother had to boil a glass syringe after each use. And that needle was not like the fine BD syringes. The point I am trying to make is that I was not able to care for myself the way newly diagnosed diabetics are able to today. I have been on a pump since 2000. That changed my world completely.

John standing next to Jane Seymour as they host a party together.
John hosting a party with Jane Seymour

With regards to John Robert Wiltgen Design, Inc., I was very fortunate to be able to run my own business for all those years because there were days when I couldn’t go to work due to doctor’s appointments or hospitalizations, surgeries, treatments, transplant… having my leg chopped off. If I had been working for someone else, I would have been let go for one reason or another.

(SKJ) – Are there lessons or insights from one domain that have helped in the other?

(JRW) – As mentioned above – my work kept me focused on running a business. Finding new clients. Managing the people in my office. Obtaining publicity. Writing proposals. And, participating in the design work. At some times I had as many as 10 people working for me. Each person spoke a different language. My Mom was with me in my office for 17 years, and she said she felt like she was going to the United Nations.

(SKJ) – What’s next for you? Where can people learn more? What else would you like people to know?

(JRW) – Like I said, there are so many things I would like to do. I took singing lessons for years and used to sing in a tavern on Sunday nights. I would like to get back to that. I want to record a collection of songs. I have a great title…”Fuck’n A Johnny Sings Cabaret”. I have planned a trip to Malta, Switzerland and France starting the middle of May (provided the virus has gone away). We will be gone for one month. When my book is published there will be all the work that goes along with that. I am a good public speaker and would like to give inspirational lectures. I also want to swim Alcatraz. I keep practicing, and then something happens and I have to stop swimming for a while. Appendicitis. Grover’s Disease. Pneumonia. Bronchitis. My husband and I also want to move to Palm Springs. We love it there. The sun. The blue skies. The snow on the mountain tops only.

(SKJ) – Thanks for the opportunity to catch up and get to know you better, John. I appreciate you sharing your story!

A picture of John next to a beautiful dancer in Istanbul.
John having fun in Istanbul

Where to learn more

If you’d like to learn more about John, take a look at his website and blog, The Candy in My Pocket.

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Scott K. Johnson

Patient voice, speaker, writer, advocate. Living life with diabetes and telling my story. Patient Success Manager, USA for mySugr (All opinions expressed are my own and do not necessarily represent the position of my employer).

Diagnosed in April of 1980, I recognize the incredible mental struggle of living with diabetes. Read more…