Diabetes Self-Management Blog

When I was 15 years old, I had my first music lesson with Art. Art is a jazz pianist who lives in my hometown of Boulder, CO, and just happens to be one of the most brilliant musical minds in the country. For reasons that are still not completely known to me, Art is not a household name in the jazz listening community. He is, however, a household name in the community of professional jazz musicians, all of whom revere him as one of the finest musicians to inhabit this earth.

Art didn’t mince words. If you played something mindlessly, if you got lazy, if you didn’t put the kind of intention into the music that the music deserved, Art would tell you. In fact, his first words to me were, and I quote, “that was bull****, now play it again and MEAN it this time.” It sounds harsh, but here’s the thing: He was RIGHT. I was trying to impress him, and playing something totally outside of what was actually inside of me. And he caught it. He said exactly the right thing. It knocked me out of trying to “impress” him (as if a 15-year-old kid could “impress” a living legend of jazz, anyway), and brought me back to myself. He was much nicer after my second attempt, though he still had quite a few pointers on what I could have done better.

Art’s style was that of a skillful Zen teacher. He said things directly, he didn’t offer false praise, and he did what any good teacher SHOULD do: He pruned away the stuff that wasn’t working in his students’ playing, and gave us the tools to make ourselves better. And if we didn’t put in the work that the music deserved, well, he’d tell us what he thought about that (and it wasn’t good).

What makes me think of all this? First, I’ve always regarded diabetes in somewhat the same way: a sometimes harsh Zen teacher who doesn’t mince words and demands that we put our concentration and intention into what we are doing. Second, diabetes came into my life right around the same time as that lesson. I’ve often talked about how much Art taught me about music. That’s a no-brainer, but as I thought about these two events, I realized something: Art taught me how to live with diabetes.

You see, before I took that lesson with Art, I had always favored teachers with a “softer” style, teachers who were more inclined to pad their opinions with comforting niceties. I was afraid of teachers like Art. At the core, I was insecure about my own ability, afraid I would be “found out” to be a fake, to be less talented, less skilled, than I had built myself up to be. In a sense, I preferred to keep blinders on, to shield myself from the areas where I needed to improve.

Of course, there’s an obvious problem with that: If you shield yourself from criticism, there is no way you will EVER improve the deficiencies that ARE holding you back. A teacher like Art understood this, and so he attacked those weak areas head-on, with quick, skillful cuts of a Zen sword. Had I gone into living with diabetes with that kind of “shielded”mindset, the results might have been life-altering. Imagine if my reaction to a high number was to ignore it, sweep it aside, and continue doing exactly what it is I was doing that LED to that high number, day after day.

Art showed me how to face problems, how to face areas of failure and areas of weakness, head-on. He showed me how to stop being afraid of my failings, and how to learn from them. And so while Art never said a word about diabetes, and was only dimly aware that I even had it, I learned a tremendous amount about how to live with it from him. Most of us who live with diabetes have probably had similar teachers, people who have impacted our relationship with this disease in ways we are only vaguely aware of.

I am amazed how often the deepest lessons in our lives come at us in this sideways kind of way. After all, I had a wonderful endocrinologist who taught me about diabetes, and so many other people who directly taught me about this disease. But diabetes is so much more than the numbers. It is so much more than blood glucose levels, carbs, ratios, and medical descriptions. It impacts our lives minute-to-minute, and influences our thoughts, our feelings, and our perceptions.

Learning to live with diabetes is learning to live with suffering — I don’t mean this in the “woe is me” kind of way, but in the way Buddhists mean it: The daily challenges of living in a world that so often falls short of our ideal, challenges us when we’d rather not be challenged, and forces us to confront weakness and failure. And so Art lives on as one of the great teachers of my life, not only as a musician, but as a human being, and most certainly as a human being faced with the challenge of diabetes.

I invite you to reflect on your own journeys to find the hidden teachers who have guided you in living with diabetes. You may be surprised. And when you find them, thank them.

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Comments
  1. Another great column, Scott! One thing, though — how is Art going to become a household name if you don’t name him? Where can we listen to or buy his music?

    Posted by David Spero RN |
  2. A quick online search would suggest that it’s Art Lande.

    Posted by Murph |
  3. I like your analogy in getting to the point of the daily challenges we all face. There are many instances one faces w/ the help of someone close to us…they might be someone who remains in our life forever or they might be someone in a chance meeting, where something profound happens & you never see the person again. If one is open to help & support it is out there to be had…even w/ diabetes. Plus there are many sources for obtaining information…Professional organizations, targeted magazines, the internet, teaching institutions, etc.

    But one thing troubles me about ‘posted comments’, as it seems to me that the majority of posts are from people that are so very bewildered by diabetes, seem to be overwhelmed in having diabetes, so scared of having diabetes, so lost in their ‘diagnosis & disease’…and I do not know why that is. It really puzzles me. Perhaps those of us who immediately accept the fact we have Type I or II or pre or gestational or whatever get on w/ it & feel there is no need to post a comment saying that we have the disease, OK & move on & take charge. Perhaps we feel that to say this would further harm all the bewildered & scared & make them feel less-than. I certainly would not want to do that. Since my diagnosis 8-yrs ago I have managed to get my A1C down to a consistent 5.5 & fasting BG’s are in the 90’s & I have never gone over 200. Initially I was so strict w/ my diet…no sweets or treats. But that was torture & I love to bake, as it relaxes me. I take pride in making something ooey-gooey good to share w/ others. I now allow myself that cake, cookie, pie or candy & it makes me happy. I am well maintained on Metformin 750mg BID. I should exercise more, but peripheral neuropathy in my lower legs & feet hamper me. Or it could be from the statin I am taking, which I need to discuss w/ my PCP. I have recently managed to lose 10-pounds, despite recent restricted activity due to neck surgery this past March. That was a sudden onset of tremendous left neck, shoulder, arm & hand pain w/ nerve pain & numbness of my entire hand in December & the MRI showed 2-blown discs. Aging sure does get interesting!!

    One of my nephews was diagnosed w/ Type I when he was 15-yrs old. He handled the diagnosis & treatment of insulin injections w/ grace & has had no untoward events. He is now 36-yrs old & using an insulin pump. He had plenty of help & support from family & continues to educate himself.

    I know that my 30+ yrs in the medical field gives me a leg up (first a Rad Tech, then a RN, CCM)…I still had to tell ‘my’ medical professionals to slow down & educate me on caring for my Type II, because for me I was their patient not a peer. When I did not understand my treatment or tests, etc. I was on the phone w/ the education nurse, dietician, Endocrinologist…or I was e-mailing their office. I had the benefit of being assigned to one of the best Endo’s available. I really like her as a MD & as a person. She takes her time & is very attentive. I also had the experience of gestational diabetes at 39 w/ my first & only pregnancy that put me at high risk…fortunately a good outcome w/ a healthy, but underweight baby boy. This came on suddenly, placed on insulin & scared me..not for myself but my unborn baby. I went from eating for 2 to having bird like portions of food. Diabetes is a complex disease & one cannot get it under control immediately…it takes many steps, education, support from within & without oneself & trial & error for what works…which inevitably will change, so you do the trial & error again. I liken it to the analogy of ‘How do you eat an elephant’? ‘One bite at a time’….for any monumental challenge. I also had the benefit from the age of 19 when I entered the medical field of seeing the advancements & improvements in the care & education of diabetes.

    Shortly after my diagnosis of diabetes, I was diagnosed w/ MCI (mild cognitive impairment), but there is no ‘mild’ about this condition. Now this was scary. In a matter of 3-months I went from a very high functioning RN, CCM w/ my memory & executive functions intact to a forgetful, bewildered & disorganized mess rendering me permanently disabled. The etiology w/ such a sudden & swift onset of MCI is unknown, as there was no brain event such as stroke. I lost the salary & job of my dreams…I loved my work & was excellent in what I did. I had to obtain cash aid, medi-cal & food stamps from the county in order to get to this diagnosis, but before they would help me I had to withdraw all of my money from my 401K & Ira & use it up, paying big penalties & taxes, lost my home of 23-yrs in the height of the recession, taking a major loss in the sale, applied for Social Security Disability Income, was denied, had to obtain an attorney to appeal SSA’s decision & won w/ a scathing report to SSA by the deciding judge. The attorney cost me 5k out of my award. I had to dismantle & downsize a 3-bedroom, 2-bath home of 23-yrs to move into a 2-bed, 2-bath apartment, care for & raise a son who was 9-yrs old at the time of the diagnosis. Had to deal w/ flack from my son’s dad during this period, compounding my stress. There is no specific, tried & true treatment for MCI, so over the past 12-yrs my memory & executive functions have slowly deteriorated. Once an excellent speller, while writing this post I have had to refer to my dictionary multiple times. I would have been totally lost in this mess if I had not had my sister & BFF-sister to support, help & guide me. They were & are my ‘rocks’.

    My medical care was being followed through the University of California, Davis Medical Center. Being a teaching facility, I was offered the opportunity to participate in a longitudinal clinical study through the Alzheimer’s Disease Center (ADC), studying the effects of diabetes on the brain. I jumped at the chance to do this, hoping that they could learn from me in order to find better diagnostics & treatments for those that unfortunately will follow in my foot-steps. I am in my 6th-yr & am evaluated once yearly. It takes a full day to do so…3-hours of neuro-psych testing, blood draws for a longitudinal study of mitochondria/RNA which is sent over-night delivery to Norway, physical exam by neurologist & geriatrician, measurements of the skull & long bones, weight, height, history of changes over the past year by self report, etc. Periodic brain MRI’s, cutting edge clinical study CT scans at the Lawrence-Livermore lab in Berkeley. I have also signed forms donating my brain to UCDMC/ADC. Participating in the clinical study has helped me cope w/ MCI, as it has restored some of my self-worth…I am of some value in this unknown journey. I say unknown, as there is no way to see to the future or predict if I will progress to Alzheimer’s. Some w/ MCI do & some don’t, but researchers don’t know why. By trial & error I have found work arounds for my lost functions, which work for a while. I absolutely love post-it-notes!!! ;)) Well until there are to many post-it notes, which then confuse me.

    I try my best to be on optimist & focus on what is going right in my life. I am blessed to have my son & his fiancee living locally, but the foremost ‘right’ thing in my life is my one-yr old grandson they gave me. He brings me sunshine, happiness & laughter…total love w/ unsolicited hugs & kisses. He has renewed my purpose in life & gets me up & going. And he is a terrific afternoon nap partner. I care for him 4-days a week while his parents work & attend college. We are bests buds.

    I have never once asked ‘why me?’, but I have said ‘why not me!’.

    Posted by Tandi |

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Living With Diabetes
Information at Our Fingertips (09/04/14)
The Outside Like the Inside (08/27/14)
Upcoming "Taking Charge of Your Diabetes" Health Fairs (08/19/14)
Patterned Behaviors (08/14/14)

Scott Coulter
We're Getting There…Eventually (09/12/14)
Information at Our Fingertips (09/04/14)
The Outside Like the Inside (08/27/14)
Righteous Anger! (08/21/14)

 

 

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