Sweet Grace: Reflections on a (Half) Life with Diabetes
Now that I’ve lived more than half my life with Type 1 diabetes, it’s hard to really remember life “before diabetes.” I know many of you can relate to this experience - hard to remember life before parenting, before marriage, before (or during) the pandemic, before you lost someone you love. Life has this funny way of assimilating the “new” which, at one time, felt challenging, scary, or even unbearable!, into “the new norm.” I just turned 55, and was diagnosed part-way through the age of 27, so yes, it’s just “normal” to have diabetes now as it has been more of my life than I lived without it!
At diagnosis, I could not truly fathom the impact that diabetes would have on my life. I thought about what I knew about diabetes (not a lot), what I felt about this new label (a whole lot of difficult and unpleasant feelings), and what I guessed might be my future (shorter life, lots of medicalization, stigma, judgment, isolation, loneliness).
Our creative, safety-oriented minds fill in the blank of “FUTURE” with all sorts of thoughts and beliefs, few of which are facts. A belief might be, “Diabetes will bring me a lot of suffering, illness and an early death” OUCH. A fact might be, “Life expectancy for people with Type 1 Diabetes has improved dramatically since the discovery of insulin in the 1920s” or “There is a lot I can learn and implement to help take care of myself with diabetes in order to live as healthfully as possible, such as using insulins and technology wisely, eating a nourishing whole foods diet, exercising regularly, and managing my stress by staying connected to loving people and meditating regularly.”
Fear and anxiety often arise when we feel a lack of control. This is normal! Getting information moves us out of false beliefs and emotion into a more factual space, where our prefrontal cortex part of our brain can focus on learning and integrating information that might be useful to actually help us stay safe and gain control (or at least a sense of it).
Upon my diagnosis (before the internet had reached my world), I went to the local Barnes and Noble and bought 8 books about diabetes (did I say I’m a bit of an over achiever?). Reading these books, and meeting with an endocrinologist and a diabetes educator quickly helped dispel some of my false beliefs. I gained facts, which my rational mind was hungry for. I recognized that it was possible to live a healthy life with diabetes (the DCCT first-round results had just been released) and there were an increasing number of options for me to access in terms of insulin types (Humalog was new at the time), technology types (the GlucoWatch was in clinical studies at that time), and faster, better glucometers were just coming out (initially I used a 60 second meter from J&J that required a rather large drop of blood; quickly I switched to a 30 second countdown requiring half the amount of blood!). I learned about terms like “Co-Pay” and “Prescription Benefits” and “PCP” regarding my health insurance. The information and what felt like the plethora of actions I could take really helped me feel increasingly empowered, and felt like I could still be healthy AND live with diabetes, both.
Did I still go to fear and worry? Of course. Do I still go to fear and worry after almost 28 years of pretty good (good enough??) diabetes management? Yup.
What helps me the most when I go to these understandable dark places of future-casting is this: I come back to right now. This moment. What is true NOW. What is true in THIS BREATH. Wow, this is almost a fail-proof way to snap my attention to what I have control over. If I am afraid that I don’t have enough insulin, I go to my fridge and count the stash. If it is low (as it has been in the past…) I do what I can to get as much as I am able to so that I have “enough” to feel comfortable (this number will be different for everyone). Same thing with pump and sensor supplies. Do I have “enough” for this weekend? If I don’t - I make some calls. If I do - I calm myself with the FACT that for this weekend, I have enough. Monday, I can do whatever I need to do to get more supplies. If I don’t have a clue what to do?? I will ASK FOR HELP. If this pains me to do this, I need to acknowledge the discomfort, and do it anyway. Don’t I like being able to help others? Heck yeah! Isn’t it nice to allow others to help me? If I’m afraid of the future, like complications or a shortened life span, I remember: this is uncertain. I can’t change the past. I can’t predict the future. But the choices I make in THIS MOMENT can help increase the odds that I can stay well. Then, I practice letting go and coming back to my intentions (to take care of myself as best I can in any given moment) and I check in with my body, my breath, my heartspace. This Too Belongs.
The RAIN practice brings our attention towards our own experience (Recognize), helps us to remember that this too belongs (Allow), guides us with curiosity through what is happening, what we are believing, and lastly, the last step (Nurture) allows us to practice self - compassion and ask ourselves what we need in this moment. I love this practice and it has helped me address a multitude of “unbearable” moments in my life which, looking back, I did bear.
In our Sangha gathering last Friday, there was a lot of fear and worry regarding how the new United States presidential administration (coming on board in January 2025) might up-end our health care. Understandably, people are afraid. Afraid of losing insurance. Afraid of losing access to care, access to supplies. Afraid in general of the threatening tone that has been sown by some of the newly elected leaders. Afraid for our neighbors, our friends, who may lose freedoms and access they’ve had under different leadership.
This is so real, and we need to turn skillfully towards our fear with compassion. It is precisely because we care so much about our health and taking care of ourselves with the resources needed that we fear losing what we have, what we know. It is precisely because we care about our fellow citizens and we believe in their belonging-ness that we fear.
Then, with compassion and courage and curiosity, we can remind ourselves how we have dealt with uncertainty and fear in the past. We need to remember past experiences - WE ARE ALL DIABETES ROCK STARS!!!! Consider how many times have you heard some riff on “I could never give myself a shot” or “Are you sure you should be eating that?” or “Do you have the bad kind of diabetes?” (Um….is there a good kind?) or any variant on the insensitive questions and judgments we receive. We are SURVIVORS. To quote Glennan Doyle, We Can Do Hard Things! We do hard things every day!!! We Know Hard Things. Living with diabetes is HARD. So - we remember our strength.
Then, to quote Nike, we Just Do It.
Whatever “It” is in this moment, the next hard thing, the next right step - Do It. “Doing it” might be practicing RAIN or some other meditation until you feel grounded and resourced enough to take wise action. “Doing it” might be calling a friend who can offer support. “Doing it might be going for a walk and noticing the fall colors, the sky, the earth beneath your feet.” “Doing it” might be going to bed and starting fresh tomorrow.
If you just don’t even know what the next step is, we have our mindfulness practice and we have our Sangha. Meditation teaches us so much. Diabetes teaches us so much.Sangha offers us so much. When we combine these, we are a force of amazingness!
22 years ago, I discovered mindfulness practice through MBSR when I was pregnant with my first child, a daughter we named Grace. Learning to meditate at the same time I was becoming a mother was coincidentally an incredible gift. Meditating and mothering with T1DM provides endless opportunities to work skillfully with my thoughts, beliefs, emotions, and sensations. Twenty two years later, it is the sweetness of Grace - of course, my child - but also the Grace that mindfulness provides - that leaves me knowing DEEP in my essence, that diabetes has brought me much more wisdom, compassion and depth than I would otherwise have had on a parallel life track, that one I grasped for initially, that one WITHOUT diabetes. On March 7, 1997, I was so afraid of the future. Twenty seven years later, I am living that future, and it is so much better, wiser, happier and healthier than I could ever have dreamed.
Living with Diabetes has sweetened not only my blood ;) but also my heart and mind. It connects me to all who suffer, to all who have something thrust into their world without asking for it, to all who know loss and grief and pain of being out of control and out of our comfort zone. Diabetes, and specifically the lessons learned through living with diabetes mindfully, has been the Sweet Grace - the “mud” that brings for the “lotus” of a life well lived.
On this World Diabetes Day, I feel a kinship with everyone who knows the challenges of thinking like a pancreas, or like an insulin resistant cell. I feel a connection with everyone who has feared for their lives with a severe hypoglycemia, or been flummoxed by a persistent high blood sugar, had a disappointing lab result or specialist report - despite trying so hard to “do the right thing”. I feel empathy for and with anyone who wants to just have a day without having to deal with diabetes, and eat a meal without seeing the carb count and insulin requirement. I feel deep sisterhood with anyone who has felt judged or shamed by the medical world, by a friend or family member, or a stranger whose ignorance spears our tender hearts.
In this moment - I invite you to take a pause, put one hand on your heart and one hand on your belly, and notice your breath. Remember that there is always more that is right with you than wrong with you. Know in your deepest of knowing that autoimmunity is our body’s valiant effort to keep us well, to protect us from some perceived insult or danger. Invoke this sense of Sweet Grace for yourself.. Acknowledge your resilience. Let your mind and body be filled with compassion. Remember the refuge of our Sangha.
May we all know peace. May we all remember our resilience, creativity and connections. May we all practice kindness to ourselves and others. May we all be free from suffering, and full of the sweetness of Grace.
