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Where am I? I am in the shower, and, out of the blue, a serendipitous thought invades my mind. I HAVE BECOME A REAL LIFE CINDERELLA. Now the best I remember, in the storybook, Cinderella had a fairy godmother that granted Cinderella’s wish to go to the ball at the palace. The fairy godmother waved her magic and adorned Cinderella in a beautiful gown and stunning glass slippers. She even provided Cinderella with transportation to and from the ball. But there was a catch…. -Linda J. PuckettThose of us who have lost our mothers cringe every year around Mothers Day. We delete the Etsy emails about perfect gifts for our moms, avoid the brightly lit card aisle at Target with the perfect Mother’s Day card, and make other plans for brunch on Sunday that don’t involve seeing moms and their children enjoying Eggs Benedict.
Maybe this isn’t everyone, but it has been me for the past four Mothers Days — since I lost my mom. There is a certain type of lump that forms in my throat when I think about how much I miss her. I don’t like to be reminded that we have no more brunches ahead or I have no more cute little gifts to buy for her.
However, this year I am taking a different approach. Instead of hiding from the day on which we Americans celebrate our moms, I’m going to join in. I’m going to go out into the world and recognize that my mother, though no longer here, was an amazing woman who still deserves a day of celebration.
There are many reasons to commemorate my mother. She was warm and kind. A teacher, she loved children and helping them learn. She adored reading and storytelling. Watching her embrace learning and knowledge sharing — especially when it came to managing her own health challenges and helping others manage theirs — has influenced who I am today and the work I do in global health.
Under the guidance of an excellent team of endocrinologists, she was able to regulate her blood sugar and figure out the right balance of insulin.
When my mother was 40 years old, she was diagnosed with Type 1 diabetes. I remember the day — I was 16 years old and at a friend’s house, and she called and asked that I come home immediately. When I walked to the back door, I found both her and my father on the porch looking solemn. She’d just heard from her doctor about her diagnosis. I didn’t even know she was sick.
Type 1 diabetes, often called Juvenile diabetes, is less common than Type 2 diabetes. It usually affects younger people and is associated with insulin deficiency. My mother and father knew about Type 1 diabetes because my mother’s brother had recently been diagnosed. We’d watched him struggle with insulin shots and figure out how to maintain healthy blood sugar levels. It had been a game changer — a life changer — for him. My mom knew as soon as she got her diagnosis that it would be life-changing for her as well.For those first few years after my mom’s diagnosis, she really struggled. Her weight dropped to 90 pounds, and despite eating a lot of food, she couldn’t regain weight. She ate so many raw carrots that her hands turned orange from the beta-carotene. Her blood sugar often plummeted, and she’d pass out; my father had to call 911 on more than one occasion.
Cinderella had to be home from the ball by midnight, or else her dress would again become her customary rags, etc. Well, there’s no need for me to elaborate. I’m sure you remember the rest. However, you are probably wondering by now why I feel like Cinderella.
It’s because I well understand what it is like to participate in a life bound by a time limit. As an insulin-dependent diabetic, my whole life revolves around time parameters. I don’t really have the luxury of being completely spontaneous when it comes to food or experiences. Actually, if the aforementioned chronic disease followed precise rules, there would be no feelings of boundaries, but Type 1 diabetes is a very personalized entity. There is no one-size-fits-all course of treatment. So many variables affect Type 1 diabetes outcomes, making it impossible to predict what path the condition will actually take.
As arduous as this sounds, it is possible to have a wonderful quality of life. All one has to do is test, test, test. God bless the inventor of glucose monitors. Constant testing is the key to enjoying life to its fullest. Why do I call Type 1 diabetes a very personalized disease? It is because of a host of variables that are unique to each individual. To name a few: Diet, exercise, illness, stress, emotions, fear, anxiety, timing — the list goes on. Now enough about all that…. –Linda J. PuckettSlowly, my mother started to learn about her body and what it needed to thrive. She began taking daily walks because exercise is so important for diabetic health. She ate whole grain bread and incorporated many fruit and vegetables into her diet. Never one who liked to cook, she began to enjoy her time in the kitchen, creating healthy meals that tasted good and were good for her body. She even found that she could indulge with small amounts of dark chocolate each evening.
Working in global health, I cannot imagine how people in low-resource settings manage a disease like diabetes.
Under the guidance of an excellent team of endocrinologists at Duke Hospital, she was able to regulate her blood sugar and figure out the right balance of insulin. The daily mantra was, “Test, test, test,” because she knew the more she pricked her finger and tested her blood, the more she would know about what snacks to have throughout the day and how much insulin to take. It was a battle some days, while others it was just a way of life.
On to what is good. Living with Type 1 diabetes definitely has its positive sides. When first diagnosed, I felt so deprived, in terms of food, but after taking a three-day nutrition class at Duke, I learned how all people should eat in relation to fats, carbohydrates, proteins, fruits, vegetables, and dairy products, not to mention proper portion sizes. As a result, my energy levels soared. I also really began to understand the benefits of regular exercise. My immune system is phenomenal. Yes, sometimes I fall off the wagon, so to speak. I may inflate an insulin injection and eat some sinfully indulgent dessert. I don’t do it often, but when I do, I treat it as a celebration of all that I have learned and achieved…. –Linda J. PuckettIn 2001, four years after my mother’s diagnosis, my father unexpectedly passed away. Reeling from the loss, I was terrified of my mother being home alone, knowing she could suffer from low blood sugar and pass out any day. I was 20 years old and terrified.The years following my father’s death were very tough on my relationship with my mother. I felt thrust into this role of “caretaker.” I constantly felt the need to call and check on her blood sugar levels. I even relocated back to North Carolina from Washington, D.C. so I could be closer to her. She very much resented that I felt I needed to take care of her. Always independent, she wanted to live her life her way.
There were several times that I called and she didn’t answer the phone. I’d send a neighbor to check on her. Most of the times she was okay, but there were a few times she was on the floor. What if I hadn’t called? I felt obligated and trapped.But so did she.
Losing her life partner so suddenly offered my mother a new lens on life. She wanted to enjoy each day, make it count, and not feel controlled by her diabetes. She wanted to be in control. She began writing about her diabetes. What was it like to live with this disease? What kinds of tips have helped her when going out to restaurants? She was always very comfortable in her own environment, but she, like other people living with diabetes, found it harder to estimate carbs and sugars when she didn’t cook the food herself. She began sharing what she learned with others who had diabetes. She gave them food journals and counseled them. She even gave a few talks at Duke.It was fascinating to watch my mom take life by its shoestrings and say, “Let’s go!” Her enthusiasm had always been contagious, but in the later years of her life, it was gregariously infectious. Our relationship as mother and daughter blossomed into an amazing friendship, built on respect for each other.
Okay, back to Cinderella. The fairy tale ended happily ever after, and I truly believe that my life has been enriched and lengthened as a result of my diagnosis. I am so grateful for all the positive developments I have seen since being diagnosed 17 years ago, and above all, I maintain hope that there will one day be a cure.
For me, even if I were miraculously cured tomorrow, I wouldn’t change a thing about the way diabetes has taught me to eat and exercise. I would continue those habits. For me, the freedom would come in the release of the effects high and low blood glucose levels render on my brain. Until that time comes, I am indebted to my real life fairy godmothers — my endocrinologists — for all that they have taught me and monitored in terms of my health.Cinderella is fiction, but I am real, and so is diabetes; however, it is not the nightmare so many people seem to think it is. I bestow my sincere thanks to all of the medical personnel that have, and continue to, transform living with diabetes from being a once-upon-a-time true nightmare into a happily-ever-after reality. –Linda J. Puckett, January 2011
She had fairy godmothers — that amazing team of doctors who helped her figure out how to manage her disease.
On May 15, 2012, my mother died in her sleep. We don’t know what happened. She had spent the evening playing ping-pong with friends at church. We all assume it was her diabetes — maybe her blood sugar dropped during the night or something in her body triggered a stoke.
My mother’s death was and will probably remain the hardest thing I’ll ever have to go through. I was so angry. She took amazing care of herself, yet she was gone. As an only child, I was left to pick up so many pieces after losing both parents. I wanted to punch diabetes in its face.It has taken so long, nearly four years, before I’ve felt able to really reflect on my mom and her illness. Diabetes has always been the elephant in my room, and I have not had much tolerance for thoughts of it because of the painful memories it brings. Yet the way my mother managed her condition has given me so much insight.
My mother was extremely fortunate to have access to so much information about diabetes. She could easily find books or material online about how to change her diet or adjust her insulin shots. She had fairy godmothers — that amazing team of doctors at Duke who helped her figure out how to manage her disease. I admire my mom’s devotion to not just accessing knowledge about how to manage Type 1 diabetes but to also sharing her knowledge with others. Her detailed writing, both personal and informative, helped people around her who were diagnosed with diabetes. Many of us in the U.S. take access to doctors and accurate, up-to-date health information for granted, but for most people in the world, these are luxuries.
Working in global health, I cannot imagine how people in low-resource settings manage a disease like diabetes. Where do they get all the supplies they need to test their blood sugar as often as they should? Where do they find dietary guidance? I know very well how hard it is to find reliable, if any, Internet access in many countries — how difficult it can be to get to a health facility. Even when people can get to a health facility, are there enough endocrinologists to provide care? Access to information and knowledge is so powerful — I know firsthand how it helped my mother.
As Mother’s Day 2016 approaches, I am not ignoring it. I will walk by the beautiful cards at Target, and I will not cry. Instead I will celebrate the memory of this amazing woman. I will celebrate her love for writing and her insight into knowledge sharing. I will celebrate her bravery and strong will. Mostly, I will celebrate a woman who understood what it meant to live life to its fullest, no matter what the circumstances. I believe this is something to be celebrated not just on Mother’s Day but every day.
This post originally appeared on the Exchange, a Knowledge for Health publication.Photos courtesy of Amanda BenDor.
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