I have often stated the phrase, Just Don’t Do Nothing. It is pretty straight forward and self explanatory. We, as parents of children with T1D, should not be waiting for someone else to do the heavy lifting when it comes to anything diabetes related. Advocacy, fundraising, helping others the question remains if not us, than who?
Here is another factor to add that, if anything, should probably guilt us into action, some action, any action. In my many years in this battle, I have lost count of how many families lost a child due to T1D. Whether it was dead-in-bed-syndrome, or they went hypoglycemic as they slept and passed, or just went into a glycemic reaction and did not make it, families have suffered the devastating and incomprehensible loss and you know what they did, they threw themselves into a diabetes cause. Fund raising, support, advocacy, and/or something else helping those of us who have no idea of that immeasurable pain.
It is now in year 13 that my dear friend and wife of my Little Brother (from another mother but just as close as a real brother) Mark, has left this world. Lisa was a one-of-a-kind woman who proved to the world that one person, just one, is all it takes to change the world; the Power of One. In memory of that voice that changed the world, I made a promise that I would give Lisa Awards each year to deserving individuals that understand the Power of One.
It’s given to people who, in their own way, change the world just like Lisa did. This is a VERY BIG deal to me because these awards are not given lightly. They are given in honor of a woman who was not satisfied to just feel sorry for herself, she changed many lives and I miss her to this day. My friend Lisa passed away in 2009, at the young age of 36. She battled cancer longer than any doctor thought she would, or even could. Through her life, I learned a hugely powerful phrase that will live inside me forever, along with Lisa’s memory: The power of one person.
Here is a quick summary of Lisa’s story, before we get to the awards. She was diagnosed with cancer. Lisa and Mark shared their writings of her journey, in real-time, with a hundred or so friends and family members, all of whom were inspired by each word. People learned, shared, and were in awe of their strength and dedication.
And then something happened.
People who were not part of the inner circle started reading the blog posts, and those people became inspired. The hundred readers became five hundred. In no time, the number of readers rose to 1,000, then 1,500. Soon 3,500 people were following Lisa’s story at every turn, both the good and the bad. Lisa and Mark were so brave in the face of incredible hardship and they inspired others to do the same with grace and dignity, sprinkled with humor.
And then something else happened.
A TV station found out about Lisa and they ran the story on the evening news of her incredible efforts to teach others. Millions heard her story and were inspired by the magic she possessed — the determination to live life and taste every last drop was shared with millions. So many others now facing trials hit those trial ‘head on’, inspired by this young couple.
Eventually, what Lisa and Mark shared so openly, became a reality and she succumbed to the physical-ness of what cancer can do. Her spirit, though, was never defeated. The war would go on with Lisa and Mark’s teaching. Her “power of one” changes lives to this day.
This column, surrounding Lisa’s birthday month, pays tribute to those who understand Lisa’s philosophy of the power of one person. Because I’m more versed with the happenings inside the diabetes community, my Lisa Awards are given to those people who live Lisa’s determination to make a difference with the “power of one” in the diabetes community. These people don’t do it — whatever ‘it’ is — for only themselves, they do it because they think it will make a difference in the lives of those with diabetes. Lisa’s words live in these special people — they know and understand the power of one.
Also, just over two years ago, I lost one of the most influential people in not only my world, but the diabetes world as well, and a dear, dear friend. Paula Ford-Martin is the reason I have the mantra Diabetes-Dad. She was a writer, editor, and all-around genius-with-the-word whether in print or broadcast media. She was a book author, a blogger, and to me; is the main reason the dLife TV show on CNBC was as good as it was. Paula passed just over two years ago in the same battle Lisa had, and she also is the only one who I bestowed the Lisa Award to twice because she not only understood the meaning of the Power of One, she lived it as an open book right to her less breath to teach others, not only in her own illness, (www.livingwithstageIV.com), but in the real life of her own children’s transition, she became a voice to be heard in the LGBTQIA community as well. This year, each recipient of the Lisa Award-Power of One is awarded to those who used the written (or/and spoken) word in making a difference; in honor of Paula as well.
My first Lisa Award this year is given to a young woman (pictured above) who when you see her ‘do her thing’, is as breathtaking as the Top Gun/Maverick movie I just saw very recently. Katie Bone is 16 and has T1D. Katie Bone is 5’2″ and 110 lbs. This week on American Ninja Warrior, it was just Katie, by herself and the Power of One, against the terror of the course in front of her. The Albuquerque, New Mexico native not only beat it; she mastered it and she now moves on in the competition. I gasped, I screamed, I yelled, and when she was done…….I cried. An insulin pump attached to one arm, a CGM to her other arm and her absolutely uncompromised strength and determination. She had a message for young people (which I find so wonderful coming from a sixteen-year-old) both with and without diabetes, “do what I do, I don’t need easy, I just need possible.” Power of One, indeed, dear Katie, my new hero…..and many others too.
Like most people who make this list, the next recipient will tell you that it was much more than his Power of One that made any difference whatsoever. He would be modest and he would also be wrong. Because way back, when, before anyone else thought that stem cells would be as earth shattering and changing as they have become, it was Bernie Siegel, an attorney from Florida who felt that this powerful research tool, stem cells, would change the world. They would need nurturing. They would need protocols, They would need looking after. As Founder and Chair of the World Stem Cell Summit Bernie and his colleagues have pioneered and promoted policy and advocacy in the field of stem cell and regenerative medicine from its earliest phases of research to present day potential. All to drive their efforts to bring safe, effective, and healthy treatments and cures to patients worldwide. The world is on board now, but before that, it was the Power of One person, and that person is Bernie Siegel.
Susan Fong immediately took to the climate and creative mastery of Pixar Studios. Starting as a software developer, Susan was the type of person who loves art and math, which also came easy to her. She came to the point where she crossed over to taking her loves and adding them to movie making. In the past she has worked on Finding Nemo, The Good Dinosaur and Coco, but it was a little addition she added to the movie Turning Red that caught the attention of the diabetes world. When Susan approached the artistic team to add an insulin pump to the arm of one of the characters, it was met with an out loud and definitive, ‘yes’. But as is Pixar’s style, if it is in the film, it’s going to be correct. This attention to detail allowed Susan to explain what it is like being a person with diabetes as she was diagnosed at age four. They went through every step what it should look like on the characters, and why. It did not take long for the diabetes community to see and react to the Pixar character. For Susan, it was all in a day’s work but to us, it was the Power of One person to get the largest and most successful animation studio of all time to say, “why not?” Nice job Susan……and thank you.
And that rounds out this incredible year of Lisa Award Recipients. Hard to believe that it’s 13 years since Lisa left us, and just over two years since Paula did. If there is one thing I have learned doing these awards each year, it’s just how magnificent people can be. The Power of One, is Power enough………to change the world…….even if it’s just one person at a time.
Years and years ago, when the insulin pumps fist came on the market, is the first time I heard the initials, or phrase, DIY. Do It Yourself. Many people with certain skill sets have taken it upon themselves to work at problems facing their loved one utilizing diabetes management tools. CGMs, Insulin Pumps, Fitness watches, and even medications are being experimented with to better manage a loved one’s diabetes, in most cases type 1 diabetes.
Sone of these DIY attempts have turned into full fledged companies trying to solve a problem. Many of these attempts come with disclosures that what is being proposed has not passed the litmus of the FDA for approval of the technique, the attempt, or the medication. So the user assumes all risks that the DIY world offers.
Now I am 100% fine with people hacking into system to connect devices and people for the benefit of obtaining the up-to-the-minute issue being needed by a patient…….but as more and more of these type ideas make their way to the mainstream, the cautions that need to go with it are becoming less and less. This is most evident in the medications being taken. Some medications are not intended for people with type 1 diabetes and many have that fact printed all over the packaging. But still, because the meds are able to help with the body as it deals with insulin etc., some have figured ‘short cuts’ to help manage their T1D.
At the onset of these projects, the users self-medicates and monitors themselves as they become their own lab-rat to see how the medication can hold optimum impact. And sometimes it works. HERE IS THE CAUTIONARY TALE: The more it gets used and meets with some success, the less the ‘warnings’ accompanies the treatment. This is bad. Very Bad.
DIY can be very useful, my only purpose for today’s article is to remind everyone that no matter what you are doing or trying ‘off-label’ PLEASE make sure you know all the details and risks. Do your homework and ask a million questions. I have heard, in recent times, that going off label with meds that many seem to be doing more and more, almost cost 2 people their lives. There may be a thousand reasons why this happened and many excuses as to why anyone would even try this. If, and that is one big IF, you choose to DIY on things diabetes related—–PLEASE do your homework.
Then do your homework again before engaging. There should be no scenario you have not heard, or are not aware, so you know how to react should tings begin to go sideways.
Take a look at the video below For the sake of my 2 children and all of yours—-please share this PSA with both your US Senators and contact lists. Tell them this means giving our loved one’s life back. Please share.
Contact your US Senator, tell them to watch this video and tell them how much it means to you.
I am a DIabetesDad www.Diabetesdad.org Diabetes Dad on FB
As so much seems to be happening in our diabetes world from management tools, to biological advances, to even hints of that ‘C’ word again occurring within the hope (and perhaps, some hype) throughout the diabetes community, it is always important to remember that the world we live in has been built upon the shoulders of so many who have come before us. They, with usually just a small alike thinking group, always believed in one thing……diabetes will just not do.
Change needed to happen.
Long before the world looked at those celebs with T1D to help get the word out, the wonderfully talented late Mary Tyler Moore and her beloved JDF/JDRF led an army of parents, children, and professionals storming Washington’s Capitol Hill to tell their personal stories of living with T1D. A major A-Plus celebrity took the time and effort to join alike individuals to raise their voices to be heard.
Before new, improved, and modern management tools were fully utilized and/or even understood, the beloved late Dr. Andy Drexler taught that using these tools for intensive insulin management was needed not only for everyday use, but also for successful pregnancies. He was among the most prominent practitioners of his time. Originally in New York, he and his trusted colleague Carolyn Robertson APRN, MSN, CDE took their practice to the West Coast until his death. He was an icon.
The late Dr. Richard Rubin, with a son and sister battling T1D, became an associate professor of medicine and pediatrics for The Johns Hopkins University. Dr. Rubin spent his career helping people with diabetes and their families manage the emotional and psychological challenges at a time when the psyche of living with diabetes was not much more than merely a phrase. And few had as much courage to ‘blog’ or write about these psyche issues than Scott Strange, who we lost in 2021. Scott and Richard set both the bar and the groundwork to sharing information regarding the psyche of diabetes.
There has been a huge long list of those who have been trailblazers with information, treatment, advocacy, philanthropy, and advancements in a world where each had the same single belief that the world around them could, and would, benefit with just not doing nothing. They did not stand idly by and they were certainly not content with the status quo in a diabetes world.
So remember that every single thing, EVERY SINGLE THING, that you notice in your diabetes world, did not just happen. Those who took on the challenge never knew that their actions would resonate throughout the world. They were just an individual, just like you, but decided that the world needed change; let’s remember ALL of them. As Margaret Mead was quoted years ago, “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.
My sister passed away this week, she was seventy-one (the picture above is how I will always remember her). She was the oldest of six kids and I, the youngest, but only seven-and-a-half years separated us. When a baby, she would feed me and marveled as I skillfully added bread, spaghetti, and meatballs into my milk only to drink it (sorry, yeech). She was my Santa Clause and I, her Little Elf (later she would call me L.E. as not to embarrass me). Now at age 63 it made my day when we would speak on the phone and before hanging up I would say, “I love you”, to which she would reply “I love you more L.E”, every time. Under most definitions, we are all a close-knit family. JoAnne was a mom to six kids of her own and grandmother to thirteen. My sister was not perfect and for the rest of this story, kindly recognize this fact we all know to be true. Let me also say that I cannot begin to thank the so many people who reached out to our entire family since we shared this news, it is so greatly appreciated.
My sister, passed away suddenly.
Why this is an odd statement to say is because for at least the last third of her life, my sister was paralyzed completely below her neck, a victim of multiple sclerosis, commonly called MS. She had many ups and downs, but always came through. Even when admitted to the hospital, coming back out was usually not that far away. This most recent stay in the hospital would be different and a decline started, would quickly get worse. As she was being prepared for some scans, she passed away as they got the equipment ready. My niece, Meaghan her daughter, was with her and in this world of COVID, not dying alone is a welcomed gift. The final end would be listed as cardiac-arrest, in essence, JoAnne’s earthly body had just had enough.
In the story from the bible of Job (pronounced Joe-b), Job is tested beyond human comprehension; death of loved ones, pain inflicted, disease inflicted, problems, trouble, and more. And yet, Job remains faithful to God and never once complained. If ever there was a modern day story of Job, my sister would be cast in the lead.
MS comes in so many degrees of severity and as JoAnne stated to me once more factually than complaining, “THIS is the lottery I win”; to be given the worst form of MS. You see my sister never, not once, ever complained of her situation. Many, many people she dealt with, turned their backs on her, both personally and professionally and they will now live with that burden. Because she proved naysayers wrong, time and time again.
Living by herself, service providers who said she could never live outside a facility alone were proved wrong as she was granted her independence and lived in her apartment, with her trusted service cat, Selene. A black cat with such a heart and positive force that one would swear she alone would break the stigma of black cats every. Caretakers would come and go but never once would JoAnne grant the permission to give up her independence. Her son, a wiz on anything that runs through the walls of a building, created practically everything to be voice activated because JoAnne’s mind and voice, despite a completely compromised body, remained sharp as a tack.
Traveling by plane, attending family events, attending milestones in both her own children’s lives and her nieces’ and nephews’ lives, seeing her beloved Barry Manilow in concert, meeting her idol “C.C.” Sabathia on the field of Yankees Stadium; JoAnne was going to let MS stop her from nothing……that attitude would guide her life. When my mom and dad passed it was not even a thought that she wouldn’t, or couldn’t attend their funerals. As the services ended at the cemetery, the order to wheel her closer was given, and she would pay her respects and thank them for all they meant to her. “God gave me the strength and mom and dad showed me how to use it”.
Many medical professionals would offer a course of action, and if she disagreed, she would fight them until one was convinced on the correct course to undertake, many times, hers. “I know this disease and I know my body”. Many family members would advocate on her behalf, and most times, it was the right path to take. I have many stories how people tried to take advantage of her, her position in life, her needs, her position, and those stories would be accompanied on how they were dismissed, each and every time. But on those whose actions could have, and might have, devastated those not as strong; JoAnne refused to say one thing negative. Not most times. Every time. She would defer the comment and say something positive about the person without fail. She would also remind all how God knew what he was doing, and so many had it worse than she. Being negative was not allowed and ‘no’ was nothing more than a word.
Her children wrote such beautiful stories as they remembered their mom this week. Each one emphasizing just how strong she was and how, each one, had a specific trait/attribute in their life they now hold due to their mom, well, being their mom.
She always and in all ways took a huge interest in her Goddaughter’s type 1 diabetes. When we spoke she wanted to know the latest and greatest in research for my two kids as well as trying always to hear about the advancement of science discoveries. Her MS and T1D being autoimmune diseases, she would share that helping medical research in one disease would surely help the other. “Autoimmune is autoimmune. Although different in their autoimmune properties, there are parallels, and there is cross over”. And of course, she was 100% correct.
Recently, she would be taken to SUNY Stony Brook Hospital one last time. And as I spoke to her daughter this week she informed me that mom was not leaving Stony Brook as she had donated her body to the worldwide education facility known for research with instructions to study her, study her MS, learn from what she lived with, lived with indeed, and use it to help others with MS and beyond.
So my sister’s last act on this earth was a gift so huge, herself. Organ donations are so needed and to actually say ‘here, take me, and use me’ is one huge final gift of love. Not surprising coming from one who lived her life the same way………a gift of love. Thank you Santa Clause, I will love you more forever. Love your L.E. I am a DiabetesDad