Learning from others with chronic illness

Screen Shot 2015-02-08 at 3.50.25 PMFinding strength in chronic illness

I’ve been watching video profiles this week on The Today Show – interviews with the people featured in Richard Cohen’s new book, “Strong at the Broken Places.” Cohen, a journalist, who has had MS for over 20 years and two bouts of cancer, wrote this book as a follow-up to his previous, “Blindsided.” After the publication of that book the response showed him that the public wanted to hear from people who live bravely with the challenges of illness, and that there are many people in the isolated world of illness who want to share their story. “Strong at the Broken Places,” Cohen says came from this desire of the many to share their stories in the hope that the sick, and those who love them, will see that they are not alone.

Diabetes is not represented in the five profiles but there are lessons for all of us to take away from those featured: Denise, a sufferer of ALS, Buzz with non-Hodgkin’s lymphoma, Sarah, a social worker in the poorest areas of Cleveland with Crohn’s disease; Ben, a college student with muscular dystrophy; and Larry, whose bipolar disorder is hidden within. The five vary in age and gender, race and economic status, but they share a determinion to live life on their own terms. Intimately involved with these patients’ lives, Cohen formed intense relationships with each and shared joy even in heart-breaking situations.

Though each individual’s illness wreaks havoc in a different way, Cohen shows how their experiences are strikingly similar and offer lessons—on self-determination, on courage in the face of adversity and public ignorance, on keeping hope alive, and on finding strength and peace under the most difficult  circumstances. Lessons we can certainly profit from living with diabetes.

The title, “strong at the broken places,” Cohen says, means we are stronger than we think. The series is likely to continue through the week on The Today Show since Cohen is married to host, Meredith Viera, and living with chronic illness appears to be coming more into the public eye.

Life isn’t what happens to you but what you do with it

Little girl_2Focus on the good stuff more

If you come here every now and then you may have noticed something has changed. It’s the text above the clown to the left. “Choose thrive over surviveliving with diabetes.”

What I really want to do throughout this year is remind you that while none of us would have asked for diabetes, and it’s a semi-regular (O.K. almost constant) pain in the butt, and I myself go from highs to lows both in my blood sugar and my frustration level, I still try to remain focused on my blessings. The good in my life — and what diabetes gives me. If I were to see diabetes as a limitation, it will limit me. If I were tosee diabetes as a pain in the butt, my butt would hurt more. If I see it, however, as a stimulus to creating a bigger, more generous and purposeful life, then it does this for me.

I am doing work I love, helping others with diabetes through my talks, this web site, my new book, The ABCs Of Loving Yourself With Diabetes (soon for sale on this web site) and articles inDiabeteshealth magazine. I am more fit than ever, look better in my clothes than ever, don’t care anymore what anyone thinks of me or the fact that I’m bucking conventional therapy with diabetes (well maybe that comes from being over 50) and am foolishly, happily hopeful that some people benefit from my doing what I’m doing.

Rather than curse my lot in life every day my sight is set on appreciating how strong, courageous and resilient I am to get up and take on diabetes again. Like it does for all of us, it requires living with complications staring over one shoulder while taking the best care of myself to keep them at bay. All the while leaving room for spontaneity, joy, light-heartedness and the craziness of everyday life.

In all the literature about diabetes, no one talks about thriving with diabetes or using pride to manage it. Why not? Why is everything gloom, doom, poor me and isn’t this horrible? Sorry, but this is not very motivational. Why are all the emotional associations with diabetes frustration, worry, shame, depression, guilt and anger? Again, lest you read this wrong, I would never line up to get diabetes or be a “diabetes wanna-be” but as they say, “Life happens when you’re making other plans” and “When life gives you lemons, make lemonade.”

Medical models seem to only see the bad news in illness. Doctors are trained in acute care — to stop ill health, heal it, cure it. But patients of chronic illness have to find the good news, because our condition is not going away. Since the 1970’s hippies, self-help and business gurus, spiritualists, and song-writers have told us to look for the silver lining, the gift in a problem, the opportunity in a challenge, the learning in failure. This thinking, however, doesn’t seem to have yet crossed over into medicine and disease. But I figure, since every morning I’m going to wake up with diabetes, and there’s nothing I can do to cure it, why not find something positive about it? Why not find something in treating it that makes me feel good about myself?  I am damn proud of all I do, medically and emotionally to keep myself tracking, even with my other life constantly at my doorstep: the shopping, cooking, keeping the house clean, oy, running to airports and meeting work deadlines.

My message this year is this — explore, examine and find at least one good thing that’s come from having diabetes. Maybe you’ve gotten your act together about eating better or received praise for your new svelte figure or are in training to run your first marathon. I know many people who were headed for heart attacks that no longer are. I also know many fellow baby boomers slipping away to far more devastating or terminal illnesses, in part because they didn’t take care of themselves. I’m not saying there aren’t bad days, or bad patches or emotions that make you want to rail against everyone and everything at times, there are. What I am saying is your overall attitude about living with diabetes will impact the experience and your actions, so why not pick the attitude that will benefit you?

In looking for one good thing that diabetes has given you maybe you’ve decided you’re finally going to dedicate some time to that dream you left along the roadside.  Maybe diabetes has helped you realize the value of time and where you’d like more of yours to go. Maybe diabetes has made you more compassionate of other’s misfortunes and more thankful yours doesn’t involve a permanent wheelchair or loss of brain cells. Maybe you realize how capable you are of meeting life’s challenges. Personally, I am happy I no longer want to shoot myself when I catch my reflection unexpectedly in the mirror. While my every day walk controls my calories and blood sugar, it also makes me feel I’ve accomplished something and kept a promise to myself. Every day that walk is a reminder I take care of my health. I’m also quite proud of myself for keeping my blood sugars so consistently in target range by testing and correcting more. And while someone will moan and boo-hoo about having to do that, I’m so grateful I can do it with today’s tools and that I even know the importance of doing it. I didn’t 20 years ago. And, worrying whether someone would marry a diabetic, well, I’m so over that!

If you cultivate a grateful heart this year, I promise you your life will change. I also promise you it may not be easy and your progress may not be steady, but it will pay off. Like most things it requires practice. So I’ll let you in on the real deal at this very moment: I’m writing this with an awful cold and would really prefer to be lounging in bed. I’m annoyed that I can’t go out and take my walk this week or likely next because I have absolutely no energy. I’m waiting every day for my blood sugar to rise because I’m sick and not getting any physical activity and so am reducing my insulin sensitivity – GRUNT! GRUNT! GRUNT! Am I a hypocrite? No, just up against it. As they say, this is a “teachable moment.”  I am being made aware I have to practice something I preach. So I recall what I read in one of Wayne Dyer’s books years ago — when a negative thought comes to mind say “STOP!” and replace it with a positive thought. Mine right now is I can order 3 new movies from netflix and indulge my laziness. Of course, since I’m now spending lots of time on the couch reading The Omnivore’s Dilemma, a positive thought may not happen anytime soon.

But here’s my final thought. The prescription I’d give everyone for managing diabetes for the long haul is to get the basics down and then get on with it. Maybe that’s what should show up on more physician’s script pads. Unfortunately then it would be illegible. Ah, well, so chomp on this: the world is still waiting for you to make your mark, with or without diabetes.

Dancing with no legs

I’ve intended all along to post excerpts from the more than 100 interviews I’ve conducted with fellow diabetics, their loved ones and specialists. Somehow I didn’t get ’round to it — until now. Since it’s the new year, it seems apt to begin with a woman whose story contains so much sorrow, and yet so much joy, and of course a lesson for us all. Her story reminds me, over and over, that it’s not what happens to us that determines our life, but how we respond to what happens. Cliché as it is, are you looking at your glass as half empty or half full?

The Early Years

Kathryn is 65, she got diabetes at 9 and then TB in her native England at 12 and went into a sanitarium for 18 months. During her sanitarium stay her mother passed away. This is certainly enough to mark any child’s life not to mention she learned of her mother’s passing from a minister at the sanitarium whom she’d never met. After her mother’s death, Kathryn remained at the sanitarium another nine months. Twice she slipped into a diabetic coma for days, in part because the doctors didn’t use IVs to revive diabetics from comas. Instead, they force fed them chocolate waiting for their sugar to rise. The day we talk she laughs as she tells me about waking up with chocolate wrappers all around her!

Having missed so much schooling, when Kathryn got out of the sanitarium she went straight to work, and then at 19 left Britain to live with an Aunt in Canada. Not long after, Kathryn met and married her husband who was a loving partner and extremely supportive of her diabetes. After enduring a heart attack and cataract surgery, he urged her to get a meter, which she initially fought, feeling she was poking herself enough with her daily injections. But when she could come up with no good excuses not to have one, she gave in. Today Kathryn lives alone, having lost her partner, but she has learned a lot in the past decade about caring for herself: she tests her blood sugar 4-5 times a day, has learned how to eat properly, counts carbs and is a svelte 126 pounds. But, for so many diabetics who got their illness long before today’s management tools and strategies, Kathryn is also a double amputee. A double amputee who dances, drives and laughs a lot.

The Legs

The first leg she told me giggling was taken off five years ago. “The doorbell rang nine o’clock at night while I was on the sofa lying down,” said Kathryn. “I got up and opened the door, it was a pizza delivery, of course it wasn’t for me and crossing to the door I stepped on a staple.” Because of Kathryn’s neuropathy she didn’t feel anything, a wound developed that turned into gangrene, incredible pain and the leg came off.

If you think I’ve been setting you up to cry over Kathryn and her unhappy life, you’re wrong. She’s about the most cheerful person I’ve ever spoken with. “The surgery,” she continued, “was scheduled for my sixtieth birthday. I went in and had my leg off and the first thing I said when I came ‘round was, I’ve got no more pain. I healed in five weeks, which they all found amazing and I was fitted for a prosthetic below the knee. I call it ‘the full Monty.’ We’ve all had quite a few laughs over this. Six months later,” Kathryn said, “I lost my other leg. I tripped over my wheelchair while trying to stand up and my foot got caught under the wheel and damaged my toe. The gangrene set in fast and the leg came off fast. I was in hospital within three days and off it came. So now they all know me down there at the hospital. and now I’ve got two prosthetics, Monty and Mathew.” Again, she tells me with a wink.

“I drive, I dance, life is what you make it. This year I’m going to England for two and a half months. I’m going on a Mediterranean cruise, I’m going down the Nile and to see the pyramids and to Turkey and Greece. I’m quite excited about the whole thing,” Kathryn informed me.

The Laughs

“To me, losing my legs was a blessing. The pain they gave me stopped, and I could do things. Imagine, I don’t have to wear diabetic shoes anymore! I don’t have to have pedicures. I don’t need to shave my legs! There are so many positives!” But when she said this, I truly had to laugh out loud. “Recently my friends and I went to a dinner theatre and I was sitting at the table and my leg was killing me and I said I have to take my leg off so I did, under the table. It was dark, no one could see, so I took it off. At the end of the play I put my leg back on and got up and I realized I’d caught the tablecloth in my leg and it was skidding off the table coming toward me as I walked away. What a hoot!

“Now I talk to other people at the hospital who are going to have their legs off and I really enjoy doing that. I am so happy to help. Every year I talk to the graduating class of the University of Alberta. Mostly people wonder how I manage it all, and my attitude. They think it’s unreal that I dance and drive. But I just can’t sit home and feel sorry for myself. I was at the theatre last night and I’m going to the symphony on Saturday. I like to get out and meet people. I also have a habit, I’m afraid. I go around singing a lot. When I’m at the hospital people find me coming round the corner legs off singing away.

The Way

“My attitude comes up a lot,” Kathryn said, as I too was amazed listening to her. “I think my positive spirit comes partly from my mum because she went through an awful lot, yet I’d never seen her cry. I’ve come through a lot in my life, I really have with the TB, losing my mum, all sorts of things and yet I’ve always been positive. I had a career working with children which I loved. I couldn’t have children which was a bit of a disappointment, but I have two adopted children and now I’ve got wonderful grandchildren. I have a fantastic circle of friends, they’re all very, very good to me. They all help me out.

“I don’t say I don’t have down days, I do. I don’t think you’d be normal if you didn’t but basically I’m an upbeat person. I’m quite happy with life and I’m doing well. I see the future as bright. I’m not too sure what else can happen but I’m going to enjoy the time while I’ve got it.”

Well, I don’t know if attitude and optimism are nature or nurture or a bit of both, but I do know how we interpret what happens in our lives and how we judge where we are in our lives, determines the quality of our lives and the satisfaction and happiness we feel. Even though Kathryn has no legs it certainly hasn’t slowed her down and that’s due to a decision she made along the way – life will not stop me as long as I can still get up.

“Just do what you want to do,” Kathryn ended our talk with. “And don’t let diabetes stop you. Don’t let it take control of you or rule or ruin your life. You’ve still got things to do with your life.” Then she told me something that surprised me, “You know I’ve never really talked to anyone about all this but you. I don’t talk about this a lot.” But it didn’t shock me when she followed up with, “You know, all the time I was in the hospital they wanted me to go to a support group but I wouldn’t. I don’t want to feel sorry for myself or hear myself say, “When I had my surgery…blah, blah, blah.”

The day I interviewed Kathryn I was feeling physically awful. I’d had a bad cold and sore throat for two weeks and it wasn’t improving. My sinuses were hurting, my ears were hurting, every night I had difficulty falling asleep because the very mild neuropathy I have in one calf was acting up and my tinnitus was roaring. Need I say after listening to Kathryn that day I was made aware, once again, just how lucky I am. So for the new year let’s all try to ‘count our blessings’ more often. I’m sure Kathryn’s tying on her dance shoes just about now.

 

 

There is a champion within each of us

It’s been a busy week with Diabetes Day having fallen this past Wednesday. I’ve been involved in various activities around town, and like my fellow A1c Champions, been giving our motivational presentation to fellow diabetics. Yesterday, not far from my home, I spoke to a roomful of type 2 patients. The good news was almost everyone knew this is Diabetes Awareness Month. The bad news was very few knew what an A1c is. You’d be amazed to know just how few people with diabetes know how to manage it.

I was speaking at a medical center in Bedford Stuyvesant, a lower economic area of Brooklyn with signs of gentrification spiritedly popping up amidst the shuttered buildings and bodegas. Most of the patients who attended have had diabetes for several years and one patient was a newbie – diagnosed just two days ago, and he was reeling. While I know full well the initial response to a diagnosis of diabetes: shock, loss, grief, anger, shame, fear…he felt he’d lost his life. I acknowledged his feelings and then said, “You know, there’s another way to look at this. You didn’t just hear a doctor say you have terminal cancer. Diabetes is manageable once you know how. Now it’s your job to find out how and take the steps necessary.”

I wish I had also remembered to tell him, and all of them, about a news story I had seen some months ago on TV. It was about a one-legged black skier training for the Special Olympics. His story is remarkable, not only because he has become a masterful skiier, but because he came from the neighborhood where I was speaking yesterday. Years ago as a teen he was caught in a neighborhood shoot-out. A bullet cost him his leg, and three months of his life as he lay in a coma.

When he awoke, this active boy couldn’t participate in the usual pick up game of basketball, but one day he tried skiing and loved it. So with a dream and much determination, he moved away from his family, friends and home to Colorado to train for the Special Olympics.

Today he is part of the Special Olympics training program. He works as a sales rep at Home Depot and gets time to train. I was awed by this young man. Not just because he can stay erect on one leg whipping down a mountain, but because of his relentless positive spirit, optimism and good will. 

When not on the slope or in Home Depot’s paint department, he’s touring — influencing kids to stay in school and spreading his good cheer and message about what you can accomplish when you put your mind to it. 

I really wish I had remembered to tell my diabetes group this story. A man, from just where we were gathered, had turned his life around after tragedy struck. They would have seen how much is possible, how you can come through life on top — including living with diabetes — when you put your mind to it. And that goes double for my newbie who’s just starting to wrap his hands around diabetes. Right now he can choose to look at his diabetes as a terrible thing or a stimulus for getting healthier, and also help his family members who’ve all been “suffering” with diabetes for years. 

At the end of the TV segment the reporter asked the skiier how he stays so positive. He said, smiling, that when he was a kid his grandmother told him something he’ll never forget. She said, “No matter what, you’re already a champion because of who you are, and the influence you have on yourself and others.” I think we’d all do well to heed his grandma’s words. 

Know that there is a champion within you and that your champion will carry you as high as you aim to go. Then when you get up there, take a look back, reach out your hand and help pull someone up who’s struggling below you. 

7, a lucky number, even with diabetes

Screen Shot 2015-02-08 at 4.10.43 PM

 

Remember that ground-breaking management book from Stephen Covey – The 7 Habits of Highly Effective People? Well, Mr. Covey and the American Association of Diabetes Educators (AADE), with support from Bayer Diabetes Care, have released a small pamphlet applying his 7 habits to diabetes care. Covey’s inspiration for the booklet? His wife was diagnosed with diabetes.

I imagine the thinking behind this booklet is to give patients a new tool to manage their diabetes, adding to the typical diet, exercise, meds routine. This tool has the patient draw from a more emotive place: understanding, listening, cooperating and picturing your perfect life. What impresses me is the head-nod to the fact that managing diabetes is not just about medical management, but includes our emotional, mental and spiritual being. Covey’s habits are:

1)   Be Proactive – Choose your actions, and be responsible for them

2)   Begin with the End in Mind – Create a vision for your life based on what is most important to you

3)   Put First Things First – Prioritize tasks based on importance and what one thing can you do regularly that will make a positive difference in your life?

4)   Think Win-Win – Build relationships with others by helping them succeed, too. From this you create the positive energy of cooperation which leads to success in all things in your life, including diabetes management.

5)   Seek First to Understand, Then to Be Understood – It’s about listening. Listen to your health care team to gain the practical skills of self-care

6)   Synergize – Combine guidance from your team and support from friends and family

7)   Sharpen the Saw – Keep everything sharp: your body, mind and spirit

It’s hopeful watching the AADE move in this patient-empowerment direction. In a perfect world, patients’ attention, with the help of their educator, would be on greater quality of life, not so singly focused on diabetes task management, but weaving that into a vivid picture of a happy and healthy life. For a positive vision of our life is truly where our motivation and energy come from — for all things — including managing diabetes. Diabetes educators would exhibit less ‘directorial skills’ and more coaching skills, helping people design a ‘life plan’ with diabetes in it, rather than just a ‘numbers plan’ — blood sugar, blood pressure, lipids, you get the idea. But since we can’t ignore the numbers aspect of diabetes management, at the back of the booklet you’ll find the AADE’s 7 self-care behaviors.

The booklet is a nice start. To get yours – and it’s free – go to: http://http://www.diabetes7.org. What we need now is a well-trained team of educators ready and able to help patients put these habits into play. Well, I guess one can’t ask for the moon, the stars and the sun all at once. But this moonbeam is a small ray of hope. For more information about the AADE, particularly if you’re looking for a diabetes educator in your area, go to: http://www.diabeteseducator.org. 

 

 

What if diabetes was just “the new normal?”

Bayer just started running a new TV campaign for their meter, the Contour. Funny, I rarely think of Bayer in relation to diabetes. I think aspirin, even though a few months ago I participated in a focus group for Bayer’s Contour meter and learned they have a whole division devoted to diabetes care. Still, I think aspirin. But they’re beginning to change my mind. Maybe they’re even beginning to change people’s minds about diabetes with this new campaign, subtle as it is.

While in the focus group I remember reviewing four concepts for the Contour. Two were very positive, and one had a tagline something like, “Yeah, I have diabetes, and, I enjoy my life.” That one must have made it because I heard something like that in their commercial. Remarkably, they’re not talking about the work of diabetes, which actor Wilford Brimley talks about selling diabetes Medicare supplies. They don’t have a combative diva like Patti LaBelle, declaring, “I control diabetes, it doesn’t control me!” And it’s not alarmist, as in the new public awareness campaign for A1cs. It’s just an upbeat lifestyle spot where ordinary people doing ordinary things say to camera, “Life with diabetes? It’s about going for it!” “Life with diabetes? Getting more just got easier.” 

A little trite? Sure. A little simplistic? You bet, but I kinda like it. What I like is it’s not threatening, frightening or bullying. It says ‘I take diabetes on the chin, no biggie.’ While us type 1s know diabetes is no walk in the park, and most type 2s probably feel the same, this may actually help type 2s feel that diabetes is manageable and not the end of life as they knew it. The tone of the pitch, and its upbeat takeaway, actually makes me feel a little more upbeat.

A few weeks ago reading Jill Sklar’s book, The 5 Gifts of Illness, I thought, ‘What if as people grow older, type 2 diabetes was just ‘the new normal?’ I mean, everyone’s getting it, so what if we didn’t look at it as an aberration, but it was expected, as in — you get older, you get wrinkles, and you get diabetes. Truth is, many experts say if you live long enough most people will get diabetes. My 84 year old father has just been diagnosed. But, trust me, that’s another story.

I mean would we look at diabetes differently if it was expected? If it was just “the new normal” at some point in our lives? Of course for type 1s it’s a little different, but still if everyone expected to get diabetes would that change how we view diabetes, and how we live with diabetes? Would people greet it more gracefully and with less alarm and overwhelm? Would people be more accepting of the lifestyle changes diabetes requires? Just as we expect to slow down as we age, maybe if we knew diabetes was a natural part of aging, we might also accept eating less and moving more as what we’re supposed to do when it arrives: the very behaviors that will keep us healthier as we age. Of course, it’s likely some people would deny their diabetes, fight it or fear it I suppose just as they do now. But others would accept it more easily, and still others would embrace it as the impetus to make the last few decades of their lives healthier and more rewarding. I have no answers, but it’s an interesting proposition don’t you think? And, going a step further, if you embrace this notion, you might find you view your diabetes differently.

On a final note, I will tell you about my experience of Bayer’s Contour meter. I was given one last week by a cde. After years of using One Touch meters, I may just prefer the Contour and it took me by surprise. It seems to require half the amount of blood the One Touch does and draw it up twice as fast. Hmmm… it’ll be interesting to watch Bayer as they get into the ring with the big boys.