“At most, someone else’s realization can act as an inspiration for others, offering guidelines for them to follow, but ultimately we each must do the work ourselves.” The Buddha. Does anyone who doesn’t have T1D really know what it is like? I think they can come pretty close. Others mourn for and with those of us afflicted. Those that are really close to us obviously feel it most intensely. Especially our mother and our father. The essence of the job of a parent is to create a safe and learning environment for us. A diagnosis of T1D of a child is a major “blow” to the family system. I remember learning about family dynamics and counseling in grad school and it being compared to a “mobile.” Some of you younger than 40 might not know what that is. I found an image to share with this short post.
Dear Parents. I’ve lived with this condition for 43 years now. I don’t know how I would ever have made it without my father, mother, brother and two sisters. They all were “affected” by my diagnosis and all that comes with it. Initially, I felt as though I was walking a tight rope and had no experience. No one else could get up there with me and hold my hand. Everyone else was down on the ground cheering me on, noticing with compassion when I “cheated” and catching me when I fell. As I entered college and through my twenties and early thirties I felt more like I was performing a balance beam act. The falls were less dramatic. I had learned enough to put a pad on the ground. The balancing was easier but the “degree of difficulty” was very high. Add to that, behavior that was not on the recommended list for people with T1D and, well….It was a daily struggle with a lot of bruises.
Then a major paradigm shift occurred in my life. At it’s core was the realization that I was 100% responsible for everything in my life, including the diabetes. I eradicated victim consciousness. Of course, it tries to pop its head up when I am vulnerable but I know that this is the real battle. This realization led me to more tools to use to manage my life from day-to-day. Instead of performing on the balance beam I was piloting a plane. The physical plane was/is my body, the fuel is the food I eat, the accelerator and acceleration system is the insulin and its delivery. I use test strips to check my ‘Altitude” (bg level). I had a CGM. Can’t handle the additional port hole after all these years. Plus it drove me a bit batty; it exacerbated my already borderline OCD.
I’ve developed three “levels” of pilot and co-pilot training. It is couched in a yogic and Chinese Medicine ‘canvas.’ The objective, of course, is to maintain a safe and healthy altitude level with regards to blood sugar. Can’t go high for too long, Can’t crash. Can’t land. Got to manage turbulence like stress and illness. Must be aware of and constantly checking things like port site and insulin degradation. Must learn how to negotiate fast swings in altitude levels. I like to glide. Level 1 training is the minimum requirements to staying in the air. Level 2 is exploring and discovering one’s current edge. Level 3 is how to push against and expand one’s edge.
In my opinion, the best thing a parent can do for a child with T1D is to teach, guide, bring him/her to the water, be in inspiration to “fly the plane.”
After 43 years of injecting insulin and surviving I can tell you that your most important and useful tool in your “bag of tools” is your intuition. It takes time to develop but as those of us know who have been dealing with this physical condition and the daily minimum requirements needed to stay here, the “math” does not always work. There are times when I am in the 200’s and I can do a correction according to the numbers and I can check 2 hours later and I am 25 points higher. Too many factors at play for the numbers to work the same all the time. It’s kinda like playing whack-a-mole all day long sometimes. I realized about 20 years ago that I could develop my intuition. Make it stronger. Bring it more into play. I understand it. That’s why, after being introduced to yoga, I continued to inquire into it, practice it and even went to a 30 day intensive 200 hour yoga teacher training. I use to be a corporate trainer; hiring and training sales people and managers. I think I will make the yoga room my new training room.
It is my experience and my current working assumption that what is within is what is worth seeking. Having to live with T1D is like turning up the volume on needing, wanting. We now need insulin, a way to deliver it and a way to continually check where our blood sugar is at. The focus is put on us. There is a saying or quote you may come across when exploring Chinese Medicine. …. “The bigger the front, the bigger the back.” SUDDENLY, upon diagnosis we are confronted with a bigger front; tremendous work to stay healthy and alive. I am here to tell you it is doable and it is made more doable when you cultivate your intuition. This is not a condition to rely on the Doctor, Nurse, or CDE for. They are excellent in introducing you to the “game” and monitoring your “results.” But they can’t do what you have to do. And knowing the math and the grams of carbs and your stressors is important. More important is you connecting to, inquiring into, awakening and growing your intuition.
We all struggle with the daily grind of this dis-ease. All of us. I have always seen it as a curse. And I am not here to tell you it was a blessing in my life. It freakin sucks a#@. However, there is an opening that appears with this struggle that I am saying is worth, at least inquiring into. And this opening can lead to a tremendous blessing. It is the opening of going within and knowing thyself. There are many ways to do this. Stay safe today.
“We are here to transform our Desire to Receive for the Self Alone into a Desire to Receive for the Sake of Sharing. That is the only real spiritual battle of our daily lives.” I have been “battling” with T1D since being diagnosed in November of 1976 at the age of 14. WTF happened? I was playing soccer and hockey and golf and just getting to the age of being capable of inquiring into who I really am and BOOM! Can you imagine? I’m sure you can. I took one injection of about 20 units of NPH insulin made from a pig. It “worked” for 24 hours, peaking somewhere between the 7 and 12 hour mark. No blood sugar monitors. No A1C tests. No pump. No short acting insulin, Everyday I felt like I was going to the circus to perform the high wire act all day and night. I did pee on strip every once in awhile to see how much “sugar” I was “spilling” in my urine. THEY put me on a 2500 calorie diet and showed me the different food groups and some kind of an exchange system for monitoring carbohydrate intake. I was released on Thanksgiving day in the late afternoon. If you know Rochester, NY you know it can be one of the most dreary locations on the planet in late November. It was about 37 degrees with a spitting rain and a strong wind of 15-20 mph. It was already dark as @$#@. The traffic lights were blurry. I remember that. I got to my Aunt Karen’s house just in time for Thanksgiving dinner. What a lay out of all the best and, now for me, worst of delightful food choices. Cranberry’s, mashed potatoes, candied yams, gravy, pumpkin pie, apple pie, cherry pie, whipped cream……..I had lost 25 lbs in three days before getting to hospital. I surely could afford to partake in this dinner. Well….one tablespoon of mashed potatoes, 2 ounces of turkey and a small piece of cherry pie would pretty much match all I was suppose to eat all day. Was this some kind of cosmic joke? Or was it foreshadowing of the lessons I would learn over the next 43 years? Was there a blessing in the curse?
I’m preparing for a shift in my life. I’m moving. It’s a long story which I will share some time if we ever have the opportunity to meet. I am developing a 3 tier training/healing/transformational/awakening/skill building type of training for people with diabetes and those that care for them. Training has been my career and over the last 21 years I have had the opportunity to integrate my personal experience living with the condition of T1D (btw, this training will be equally applicable for T2D’s with a few tweaks) with yoga, meditation, acupuncture, massage, walking/running, weight lifting, food choices and other paths of inquiry. What I have developed is a process which increase one’s RESPONSE-ABILITY in dealing with the condition. Tier One is about proper alignment and the awareness of the minimum requirements needed to stay alive and healthy. Tier Two is a process that journeys to one’s current personal edge with awareness, skill development and optimal attitude required to push on that edge; to expand one’s capacity and desired outcomes. Tier 3 is an intensive “push” into one’s untapped potential. So few of us have the opportunity to experience the kind of attention, intention and focus to do a Tier 3 Type of Training. I had the opportunity to engage at this level for a consistent 3 months several years ago and it is my desire to share this with others. I have found that short intense pushes are one of the keys in dealing with the physical, mental and spiritual conditions of diabetes.
Keep an eye out for future posts. My dream is to have a place in south Florida for the winter months. The heat helps when confronted aggressively. I lived in South Florida for some 25 years.