November is over. Did you miss it? Did you do something for diabetes awareness month? Did you need a reminder that diabetes is in your household?
I get it. So many believe in the ability to celebrate a good life despite/in spite of living with diabetes. A time to let the world know, and help diabetes awareness, for an entire month. What a concept.
Not to me. November is the same as its 11 colleagues that make up a year. I celebrate, educate, advocate, and hopefully inspire (a little) 365 days a year. Telling someone who lives with diabetes that there is a month totally dedicate to diabetes awareness, the answer you will most likely hear is, “Thanks but no thanks—-I live with it 365 days a year.”
It’s nice that some roll out diabetes awareness month as is done with holiday decorations and celebrations. But in truth, we choose to celebrate our kids every day, a special month is not needed. What our kids do all year round is worthy to celebrate all year round.
It’s nice that some roll out the advocacy for diabetes causes during the month of November. But in truth, we choose to fight for the rights of those living with this disease every day we can. Insulin costs, rights, and the ability to have what everyone else has gets a full court press all year.
As I stated it earlier…..I get it……I really do. Blue, new, you, and what’s due are the voices loud and clear. Let’s just push as hard all year long. No matter how small or how large, “just don’t do nothin”—-but do it all year long.
When I first decided to interview Morgan Panzirer, it was about half way through reading her book Actually, I Can (T1D Media, available on Amazon). The title of this article, An Opportunity, Not an Obstacle, is a rule Morgan Panzirer lives by. I truly wanted to find out if the author of the book I was reading, was as captivating in real life, and as grounded, as she appears in her book. Turns out the book, as good as it is, doesn’t do justice speaking to the author in person. I know this, I have not met many twenty-somethings in my life like Morgan Panzirer.
Almost anyone in the diabetes community knows the name David Panzirer (if you don’t, you should) as he is a grandson of Leona Helmsley and was appointed as a Trustee upon her passing in 2007. The amount of money the Helmsley trust has given to diabetes organizations, research, and causes, is incredibly astronomical. I share this because it’s important you know this in the context of my interview, below, with Morgan. When I picked up the book I knew it was by the daughter of, argumentatively, one of the most influential individual funders to diabetes causes in the last fifty years.
My interview was just she and I.
What I got was a young woman; an extremely kind, articulate, sharp, young woman living with diabetes sharing what that is like; and she is a woman who is on a mission. What I got was a man who, through the eyes of his daughter, is a dad. What I got is a family who undergoes all of the life any family with two kids living with diabetes, must face every day.
We need influential people to help continue funding our diabetes causes but we also need to always remember that at the end of the day, we are all just families living with a disease and being part of a club no one wants to be part of. The difference is in those families who choose to make a difference, and as far as the Panzirer Family is concerned; Actually, they Do!
DD (Diabetesdad): Thank you for taking the time to talk. When young people do something in spite and despite diabetes, and do it as well as you did with the book, it was very moving for me. My own kids have done much, and I love seeing when young people do something to help others. I loved, loved, love your book.
MP (Morgan Panzirer): Thank you very much.
DD: When were you diagnosed?
MP: I was diagnosed March 22nd, 2007 at the age of 6 and am now 20.
DD: When did you start the idea of writing a book.
MP: It actually did not start out as a book. I always wrote and wrote about things important to me. When I was diagnosed I wrote about living with T1D. How I felt, what frustrated me. I would write when I had a good day, a bad day, just life. I wrote through middle school and was unsure where the writings would go, and in 10th grade I just shut it down, unsure what I would do with these writings……they sat on my computer. My senior year in high school, I came across it again and I gave it to my teacher and asked her if she thought anything was there? She read it. She loved it. From there we worked together, edited it more, continued and finished it, and the rest is history. We bought it to a publisher and after about 9 months, the book was ready to go. In total it was about a year and half from when I started.
DD: Now that you look back on it, so much has changed in our world from COVID to so much more. Would you change or add anything?
MP: Great question. So much happened as I transitioned to college. Being on my own for the first time, there were certainly challenges with that and moving forward for my first two years in college. I would write about my experiences coming here, to Villanova, and the adjustment…….and it was an adjustment.
DD: …..and your dream?
MP: To become an endocrinologist.
DD: Let’s go back to the moment you were diagnose and you realized life would change as it has for so many. In as bad as that must have been, and as you look back and recognize that change, was there anything else in your life that you can remember, that also changed your life……not being about diabetes.
MP: Another really good question. There certainly have been times when I absolutely realized that life could, and was about to, just change on a dime. My Great Uncle, who was like a father-figure to my dad, was fine one day, had some trouble with his vision, had an MRI, and 9 months later he was gone from brain cancer. Life is just so fragile. We just cannot take any day for granted because we just don’t know.
DD: So, as you went through this particular tragedy, this horrendous tragedy, did you find yourself saying; “Wow, I got this (dealing with diabetes)” comparing the tragedy you were dealing with?
MP: Totally, 100 percent. It’s funny you said that because for years my siblings and I would shop for Christmas presents for kids in children’s hospital. And we would go and deliver these gifts. One year, about two years after I was diagnosed, I remember walking around the hospital delivering gifts and I turned to my parents and said, “My diabetes is nothing compared to this.” Now to be clear, I’m not minimizing what it’s like to live with diabetes, and I know how serious it is, but just walking through the children’s ward it was just eye opening on how much so many have to deal with as well. I can handle what I have.
DD: Let’s touch on that for a minute. It’s like a two-edged sword as you, my kids, and others don’t look like those in a St. Jude’s commercial. Encouraging our kids to live life to the fullest, a commercial is not going to move people like a puppy in a cage to help. What would you do, given the chance, to tell the story about what it’s like to live with this disease? To get others to help….with funding a cure, education, whatever the cause, but to somehow help the diabetes community? How would you walk that line and get that message of getting those to help, and at the same time show the world that people with T1D can do great things…….like even becoming a pediatric endocrinologist? How do we move people?
MP: I think the only true way, is to somehow show a ‘day in the life of….’. One truly does not understand unless they live with it, or it is in their household and they see it first-hand. The balance of living life while tending to blood sugars and everything diabetes is an ongoing and never-ending situation. That the management and living with it impacts every other single thing done throughout the day needs to be shown. I think how to do that in a minute or so public service announcement would be a real challenge.
DD: Your sister, Caroline, who is three years younger than you, was also diagnosed about three years ago. Share about that day.
MP: She was enrolled in a clinical trial and she was showing all of the auto-antibodies so we kind of knew it might be coming. But we surely did not know when. After watching me my entire life, being told that it was probably going to happen at some point, I believe, is tougher that when it’s a complete surprise. When she was diagnosed, my chief concern, and goal, was what could I do to help during this transition. I know how challenging it is, I wanted to help her understand. Thinking of ways, I could be there and support her during that time.
DD: Did you feel almost an obligation to nurture her and help her along?
MP: Yes, completely. She is a very, very, good lacrosse player. To help her manage her diabetes so she could continue that became very important to me. To give her suggestion on balancing those blood sugars, as much as she would allow me.
DD: My daughter, and her younger brother, both have diabetes and Kaitlyn speaks to her brother in ways I could never do. Do you find that you can say things to Caroline about diabetes that your mom and dad couldn’t?
DD: One of the many stories I found interesting was when your mom went for a run, ran into Martha Stewart, came back home, and shortly thereafter, you’re on the way to the studio to be on the show. Can you share that story?
MP: My mom is a big runner and she runs with her friend. I was pretty young but I remember that Martha Steward lived pretty close to us, and they were running on a dirt road, and Martha was on one of her horses, and they all began a conversation. Somehow, which is not so uncommon, my mom talked about me dealing with diabetes and Martha was pretty taken about our journey and said we should be on the show. My mom came home and said, “Hey, guess who I ran into today?” One thing led to another and my mom said one day, “You’ll be missing school today we are going to be on a television show.” We went into the studio and of course one of my most vivid memories was my mom sobbing on camera. I was probably 7 or 8. But we did the show, a chance to teach others.
DD: I deal, meet, and know many, many people in the diabetes community and you have a gift many people would like to have. Your positive attitude is so evident in your life. Why is that?
MP: I think, in part, it is the timing of my diagnosis. Kids are resilient. I was extremely frustrated, at a young age, when I was diagnosed. But it was here. I had choices to make on how it would impact me and my life. I remember actually thinking, “Well, I’m not going to get out of this, so I might as well make the best of it.” I’m not so sure I would have the same attitude if I was diagnosed in my teen-age years. I knew there was no choice and my nature growing up was not a pity party and walking around with my head down. I have things I want to do. I want to get to the things that I want to do. My attitude of I’m just going to deal with what comes my way, really got me through.
DD: I have to ask you. It’s just so very clear that your family has been extremely fortunate and have provided incredible opportunity for you. Your mom and dad have worked hard and I have to share, nowhere does it come across the life style you have had. You make it clear that you understand the life you‘ve been given. And, yet, nowhere in the book, with the exception of sharing a few meetings with some known people (The Pope, Presidents, Celebrities) did I feel for one second that ‘privileged attitude’ and quite honestly, the ability you have to stay grounded in the world around you is almost envious, why is that do you think?
MP: A really good question again. An honest ask. Yes, I do know but I have never thought I was, or wanted to be, better than anyone else. I think everyone around you, has a story to tell. I love meeting new people. I’m well aware that what you first see in someone is not always what you get. People could be going through horrible times behind closed doors and we would have no idea. I’m open to new people and chatting a conversation is something I enjoy doing, with anyone.
DD: You stated already that your mom and dad made sure that giving back was part of the family dynamic.
MP: From the time I was a child.
DD: I like to close my interviews with a little thing I created. I will say a word or a phrase, tell me the first things that pops into your head, either a single word or a short phrase. Ready?
MP: Yes. I think it’s a bit scary……. (Both of us laugh)
DD: Speaking in Public?
MP: Nerve racking.
DD: Pope Francis (whom she met)?
DD: Gideon (her horse)?
MP: Love. (Laughs)
DD: Dealing with a blood sugar reaction during an activity?
MP: One of the most frustrating things ever.
DD: Karen Zlotnick (Morgan’s high school English Teacher)?
MP: An influential part in getting the book out.
MP: Hopefully in my life time.
DD: Management tools?
MP: They have come so far in just the 14 years since I was diagnosed.
DD: Mom and Dad?
MP: The most supportive parents I could ever ask for.
DD: Caroline and Luke?
MP: Always keep me grounded and we have a lot of fun together.
DD: I am hoping that my tomorrow will be………what?
MP: (thinks for a moment) Will be filled with whatever I want it to be.
DD: Thank you very much for your time. I have stated before that your family is so special to me in how you all have impacted the diabetes world around us. From your dad’s no-nonsense approach to moving the needle, to all of you; and the way you support each other. The way that you, your mom, and how you all are not afraid to share your story so others may learn is inspiring. I thank you for your time.
It is now in year 12 that my dear friend and wife of my Little Brother (from another mother but just as close)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 a year 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 a year 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.
This year’s recipients are: Morgan Panzirer.
Morgan’s book, Actually I Can, is an autobiographical account of her life living with diabetes, with the key emphasis on ‘living’. And living she is indeed doing. Now in college in a pursuit of entering the world of medicine, and a lifetime meeting everyone from presidents to superstars and even the pope; but also battling high blood sugars and daily diabetes management, it’s quite clear that Morgan is surely experiencing EVERYTHING life has, both good and bad. It’s not easy to put it all out there showing the world who you are, it’s a tad surprising when it’s someone as young as Morgan. Still in her teens when she wrote the book, her account of what it’s like living with T1D is a must read for anyone, but specifically for those in their teen years. A few years ago, I wrote about Morgan’s dad, diabetes philanthropist and businessman, David Panzirer. Like her dad, Morgan calls them exactly as she see them in her life, and the life she leads, as she deals with diabetes. She makes it clear that there will be no pity-party in their house, she has too much living to do. Morgan’s book is a realistic look at what she goes through every single day and how important it is to keep a self-check on all you do both physically and mentally, when it cones to T1D. She understands what she has and what she needs to do. She understands she is more fortunate than many, but she also lays it out for others to understand that diabetes just doesn’t care who you are and/or where you’re from and she readily points out that it’s not the fear of the storm but more about learning to dance in the rain. She makes it clear to all who are reading her book that if she can live with T1D, anyone can. ………that you will come out on top no matter what it takes. As I read, I came to understand that this is one very special young person. As I interviewed her for an upcoming article, I was touched by her sensitivity to those who had to undergo what she did. She now feels it’s her mission in life to let others know what she found out…..yes, actually, they can. When others might have just kept silent, Morgan is a living voice of The Power of One.
My second Lisa Award Recipient is: Stacey Simms.
Stacey is a host of a podcast at Diabetes Connections, which she does; and an author, The World’s Worst Diabetes Mom—which she clearly is not. With a very extensive background in broadcast journalism, Stacey traded in the glitz and bright lights to help others as she conquered her own trials being a mom to a son who was diagnosed with T1D just prior to turning 2. The amount of awards she has won and the amount of recognition her podcast has been given changes nothing of Stacey’s drive to just help………one parent at a time. To help people living with diabetes…….one person at a time. Her interviews read as a who’s who in the diabetes world, and it is not uncommon to find hear lectures online about being ‘the worst mom’ across the United States which are really just morsels of experiences she has learned over the years. “We must make mistakes in parenting, it’s how we learn and it’s how how we can best give our children the gifts of resilience and self-confidence.” Her velvet voice and incredible interviews make listening an absolute joy and one of the easiest and best ways to educate ones self about diabetes as a whole and also to hear what powerhouses in the diabetes world have to say. One microphone, one woman, and a whole lotta good for this world to experience. Power of One, indeed.
My third Lisa Award Recipient is: Renza Scibilia
Renza is one of those people who, wherever and whenever you see her walking towards you at a conference, you automatically just smile. Chances are, as she is walking toward you, she is already smiling. She possesses an incredible energy that just shines out of her. Her Diabetogenic, Real Life with DiabetesAward Winning Blog is as much an educational tool as it is a sword for those who do anything to lessen the voice of a patient’s needs to be heard loud and clear. When I saw the picture I included in this article, it just shows you who Renza is (minus being a wife and mother too) doing what she is known for, the written word. Living in the world down-under, she travels from Australia as much as needed to lecture and share he experiences, her wins, her loses, and her life living with T1D for over 20 years. Renza lays it all out there for all to see and she is also not afraid to pick up the baton for those voices needing to be heard. A woman who lives by the mantra that her life is not about diabetes…..and it is isn’t, it’s about helping others. Renza is as comfortable being a lead panelist at a worldwide conference as she is is sitting with you having a glass of wine. She is as comfortable speaking to a child about living with T1D as she is fierce about giving a voice to those who go unheard, In as much as I just love seeing that smiling face coming towards me at a conference, I’m just as grateful that my kids with T1D have that advocacy voice speaking up to better their lives. She is a force that proves just how valuable a voice can be, even as a Power of One.
And that rounds out this incredible year of Lisa Award Recipients. Hard to believe that it’s 12 years since Lisa left us, and just over a year since Paula did. If there is one thing I have learned doing these awards each year, it’s just how magnificent people can be. And the world is full of those who just believe that the Power of One, is Power enough………to change the world, even if it is just one person at a time.
At some point or another, we parents seem to come to a roadblock where we feel horrible but realize that just one more shot, one more low, one more sleepless night; well, we’ll just completely lose it. The thought, “I just can’t do it anymore” comes to the forefront of our mind. We look in the mirror and the guilt for feeling such a way overwhelms us and we cry uncontrollable tears both out of guilt for feeling this way, and also, out of the severe frustration that another day has gone by and our kids still have diabetes.
Chance are they ‘take on’ what they do because of what you taught them. We made them understand that if we could take away their diabetes and take it on our selves, we would. We shared that we would have their backs whenever they needed us to, and we did. We were the ‘bad guy’ when we had to, and we were the shoulder to cry on when that was needed most. Onward.
I have never met a parent that did not tell me how much they would take on if needed. We’re parents, this is what we do. I have never tried to make our kids feel like I have any idea what this disease is about, not having it, how could I? But here is where you need to cut yourself a break because our kids, and may they never, understand our feelings either. By the way—-this includes grandparents also.
Part of our role is to make sure they never have that thought because we are here; we are the fortress, we are the strength, we are the foundation……..for all they need. Think back to when you started this journey. “How will I ever………” and a million scenarios came into play. The thought “I just can’t do it anymore” came into mind and you realized that you had to, for them. Think back on how lost you were that first week, even if it was just last week, and how you moved forward in what seemed like slow motion. But forward nonetheless.
Forward is good.
“I just can’t do it anymore.” Yes you can and you will. You must. And there will be days that they are back out there and score that goal, get that scholarship, get that job, pitch a no-hitter, graduate college, get married, have kids. Know this, as you witness these days as well as all those long nights, you had something to do with those successes.
I read in a recent FB post about a parent who was filled with despair and absolute loss that their child was diagnosed with type 1 diabetes. My column, this month’s column, is dedicated to you.
Dear Parent to the Child Newly Diagnosed with T1D,
Let me begin by saying how sorry I am that you are now part of ‘this club’; ‘a club’ of which none of us ever wanted to belong. There is not one single thing that you are thinking, or have thought, that most of us have also thought. We know your fears.
Outside of those fears, in actuality, our kids are doing GREAT! That’s what we WANT to share but the fear you have, we have too. Always did and always will. But here’s the thing, the first night became the second night which became the next month, and then the next year and we woke up one day and it was 28 years for our baby girl diagnosed at age 2 and 12 years for our youngest, a son diagnosed at age 13.
So although the fear is there, we have learned to take this ‘diabetes thing’ and live with it and allow it in our lives (because we cannot control that) but not to allow it to rule our lives. We do not live in fear, we live in ‘bring it on’, we can handle it.
Our kids make friends, go on to high school, college, and beyond. They are in the homecoming court, robotics club, prom court, track team, badminton team, and so much more. They letter in sports on high school teams, they play college ball, some even turn pro. All with the same disease that has you wondering today, about your child’s tomorrow.
They become executives, nurses, doctors, and play sports on teams like the Miami Marlins, the Pittsburgh Steelers, the Toronto Blue Jays. They win medals at the Olympics, win Grammy Awards, Academy Awards, and they even become Miss America. You see it’s better to live a life by grabbing it for all it has and letting nothing stop you, or your child.
It’s hard to see that right now as you cry while you inject your child with life saving insulin or prick their fingers to check their blood glucose number, or even pricking the heels of their feet because they are just too little for their fingers. It’s hard to think that your daughter calls you when she makes you a grand parent as you think, today, will anyone even marry someone who has this disease? The answer is yes.
Learn two things: The answer to every one of your questions about what you child can do with diabetes is the same answer as if they did not have diabetes. Yes they can, will, do and achieve. The second thing, and it’s also the answer as to how the first thing can be accomplished; and that is education. Learn all you can about this disease and how it impacts your child, it is the ultimate equalizer. Education.
You do not see that at 3 in the morning as you cry out, “Why them? Give it to me.” But I have been there and so have millions of others. Look in the mirror and tell that person, “You’ve got this.”
One day at a time.
It’s okay to hurt, cry, scream, be frustrated, exhausted but look at your child……..you just can never give up. Look at them. They’re worth every bit of energy you have but don’t waste that energy……you will look back and know that your child is doing so well because anything else is just not an option. You’ve got this.
We’ve all been there. We’re all here now. If you need us, call. Sincerely yours, DiabetesDad
I ‘m not quite sure why? Perhaps it ‘s the culture or the climate of late, but does anyone else sense there is a different feeling among posts on social media dealing with diabetes, and the management therein for one’s self or for their child?
It’s as if the the number one rule of years ago, has been forgotten. What you read on social media is not fact, as much as it’s one’s opinion, albeit some really good opinions at times, and that diabetes is not a one-size-fits-all proposition. I’ve witnessed some pretty heated exchanges lately that derail even further as someone’s different opinion’s weigh in, and also from those who feel their opinion is enough for people to believe as a gospel-truth-attitude, sort of a “….that’s the way it is!”…… mentality.
This has always been a very complex disease. This has always been full of many different groups and organizations that are as different as night and day. But here’s the thing, it’s your choice who or what to believe in and support…..or not. The one thing I have always felt to be true is that the equalizer in all things diabetes is education. But it cannot be just the more you know, and that’s it. It truly needs to remain that the more you know, the more you want to know. And you seek those answers because the ever-changing world of diabetes is a constant, and will stay a constant.
This is an ever-changing world and the treatment of diabetes changes all the time. If someone feels the insulin available at Walmart works for them, and have figured out how to make it work, who am I to say other-wise? If someone feels that their child needs a diabetes-alert-dog, go for it. If change needs to happen in our country’s health care, so be it. If someone feels that walking, riding, or fund-raising for one of the many organizations in our diabetes community is something they choose to do, we should applaud their efforts. If you feel that because of pharma companies, a cure will never be found, that’s your choice.
The one question I have asked (as I write this) each day for the 10,412 days since Kaitlyn was diagnosed at age 2, and the 4,393 since Robb was diagnosed at age 13 is what can I do, today, on this day to make a difference in their world. I cannot, as I have stated a million times, just do nothing. What positive energy can I bring to this world that helps us all and does not waste a second on something that does not move us forward. I wish I had the energy for much more, but I don’t. I need to stay focused on what I can do.
I’ve learned many things over the years, made many mistakes (some real whoppers, too) in my children’s lives and in this community. But I also believe I’ve fought for change, have reached out to those in need, and supported those who I felt will bring us to that cure I one day hope for. Not tomorrow, no, but supporting those who will stay at it….because truthfully, if we don’t support these things and fight for these things……who will?
Let’s not waste one second of time tearing someone else down who is dealing with diabetes in their lives like we are. Diabetes gets enough…….it should not get that as well. I am a diabetes dad. Please visit my Diabetes Dad FB Page and hit ‘like’.