I remember creating my intention the day I was diagnosed. Sitting in a hospital bed, I made a promise to myself, deep within my heart and mind, that I was going to prevail over diabetes. Having already been forewarned by medical professionals of the inevitable doom, destruction, and death associated with lack of dedication to diabetes management, I knew in that moment that in order to survive, I could not falter from this plan of perfection.
Within the confines of the pediatric hospital ward, diabetes seemed more manageable… dare I say, easy. The educational instruction I received made taking shots and testing my blood glucose seem as routine as brushing my teeth or making my bed – just another task added to the day. Yet, after being discharged and returning home to my normal life and activities, I found what I thought would be simple to be anything but. I was ill-prepared to handle the emotional burden of daily diabetes management and left without the resources that could provide me with the support I so desperately needed.
Diabetes became a beast that I didn’t know how to tame and it grew more fierce each and every day. The guilt and disgust I felt towards myself for not being able to cope properly dragged me down, and left me feeling paralyzed, isolated, and defeated. I became trapped in a cyclical hell of wanting to do better but not knowing how to sustain any progress that I would make. It was a classic case of one step forward, two steps back, as I raced against a clock that I knew would eventually run out. Unfortunately, the worse it became for me, the more I tried to hide it. The shame was unbearable and during those times, being outed as a failure was a worse consequence than any complication diabetes could throw my way.
I believe one of the most unexpected aspects of my life with T1D is my understanding and discovery of how insanely hard it all would be. In the beginning, I had so much hope and such a strong belief that I could navigate my new life as a diabetic with ease. Boy, was I wrong and in for quite the surprise. When I think back on those first few months with diabetes, I’m left questioning if perhaps I would have benefited from knowing that I could have asked for more help. However, I also sometimes wonder if it truly was a situation of me needing to stumble hard to find my way. Regardless of how I got where I am now, I’m so thankful to live a more harmonious life when it comes to my relationship with diabetes.
In contrast to how unpredictably difficult it was to accept my diagnosis and find a strategy for success, is how incredibly easy it was (after a little mental fortification and personal dedication) to completely change my perspective on how diabetes exists in my life… because let’s face it, this is MY world, this is MY life, and diabetes just happens to be in it. One of the greatest decisions I ever made was to become more involved in the diabetes community, both online and in real life. Talk about an unexpected blessing! I have made so many wonderful friends and have had such life changing experiences since rising from the ashes of my disappointments and despondency.
A quote from the Buddhist teacher, Sharon Salzberg, comes to mind when I think of the unforeseen path I took after my diagnosis.
“If we fall, we don’t need self-recrimination or blame or anger – we need a reawakening of our intention and a willingness to recommit, to be whole-hearted once again.”
All it took was a reawakening of my body, mind, and spirit, to put me on the road to the life I now lead. When I was struggling, so much precious time and energy was wasted blaming myself thinking I was a “bad diabetic” and that change would never come. I met diabetes with resistance and a forced (and in the end, false) sense of defeat. Little did I know, this time of strife was merely a prologue to the narrative I now choose to follow.
Sharon also says that “..each decision we make, each action we take, is born out of an intention.” As I go about my days, I am perpetually reminding myself of my aim to simply do the best I can and try to help others along the way. The intensity of focus on my individual goals and aspirations may fluctuate from day to day, but that core desire to lighten the diabetes load for others by sharing my honest self and my experiences with warmth and compassion, is the compass that keeps guiding me towards the light.
I will eternally be astonished by how the very thing that threatened to take me from this world in a wave of physical misery and desolate solitude, is the very thing that motivates me to get out of bed each morning with a fire in my belly and a song in my heart. As I continue to infiltrate the wonderful world of the diabetes community as much as humanly possible, I have set yet another authentic intention that no one, least of all myself, could ever have anticipated. Some time ago, I decided to make diabetes my professional focus, despite the fact that my current 9-5 still reflects otherwise. Over the last eighteen months specifically, I’ve had various opportunities arise that could potentially have made having a “diabetes job” a reality for me. It’s been difficult to turn down multiple offers for “dream positions” that just didn’t seem to be the right fit, for one reason or another, but I take solace in knowing that my future is brewing, baby.
In the meantime, I’m making strides to further my education and feverishly illuminate my mind with all things that interest and intrigue me. I continue to lead peer support groups for women with diabetes, an opportunity that gives me a great sense of pride, and I seek any and all chances to interact and connect with others living, or caring for those, with this condition. Additionally, I’m presently participating in clinical research trials for the Bionic Pancreas, as well as finally dipping my toes into the pool of legitimate diabetes advocacy, both on the state and national level. I’ve even had the distinct honor of being elected to the Board of Directors of the non-profit I credit as being a provider of many of the resources (and friendships) that led me out of the darkness nearly six years ago.
These details barely scratch the surface of what I am up to and what I may have waiting patiently in the wings. Just when I think that perhaps I’m spreading myself a little thin, and maybe over-doing my involvement, I reflect on more words from the magnanimous Sharon Salzberg, “We learn and grow and are transformed not so much by what we do but by why and how we do it”. I love the feeling I get knowing I belong in this crazy, mixed up tribe of pancreatically-challenged individuals and I appreciate having the understanding that there is no small gesture in this community. Our involvement and our dedication to both ourselves, and to each other, matters more than words can ever express.
Diabetes has been the hardest, most demanding teacher I have ever encountered, and though there is always more to learn, I feel as if I’m finally using all the valuable lessons I have already absorbed while on this journey. I used to think I needed to be perfect. Now I realize the only thing I need to be is present… present for myself, so that I may capitalize on all opportunities to support my physical and mental health, and present for others, so that no one ever need feel as lonely as I once did.