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I first fell in love with memoir as a junior in high school during a course aptly titled Rewriting A Life. There, I was introduced to the work of Mary Karr, and to this day I soak up her words like a sponge absorbs a misplaced glass of cabernet: fully, and scattering droplets where they are most needed (the only clean part of the carpet, for example).
Here’s a droplet:
When you’ve been hurt enough as a kid (maybe at any age), it’s like you have a trick knee. Most of your life, you can function like an adult, but add in the right portions of sleeplessness and stress and grief, and the hurt, defeated self can bloom into place.
That’s sort of how I feel lately. The perfect storm of life stressors- past, present, and future- has left me questioning my moral successes and failures, my worthiness as an advocate, and where to go from here. The answer is that there is no black or white response- only more questions, and more places to go. The best work I can do at the moment is simply to voice this.
I am angry that our fellow people with diabetes are dying because insulin is inaccessible and ludicrously expensive. I am angry that the people who can afford insulin- myself included- are under the constant pressure of maintaining positive disease outcomes with rusty toolboxes. I am angry that we do not have a cure. I am angry that we are so fragmented as a community, that when we voice dissent we are quickly hushed by the status quo of comfortableness and the diabetes industry- luxuries that so many others do not have. Finally, I am angry that I am angry, that I have scapegoated much of my anger on diabetes, and that I have not always handled life’s difficulties with the grace and dignity that I know dwell within my heart.
However, I am grateful that despite the bad stuff, there are friends and supporters who still believe in the good stuff. Their love has never wavered, and has inflated into a life raft when needed most. (Thank you).
Rewriting A Life does not mean you get to copy and paste a Cinderella ending to your story. You simply get to live it, and to describe the good and the bad in detail that has the potential to resonate with someone else who desperately needs to hear you. Perhaps you desperately need to be heard, too.
Recently, emotional and physical health have felt like running on the hamster wheel while nursing a sprained ankle and a hangover.
So, I switched things up and adopted a guinea pig.
This is Reese. She is colored like a Reese’s cup.
She is currently petrified of me, but I hope the same thing that I hope for you, or me, or any living creature: that she feels loved nonetheless.
This week I was featured in HealthiVibe’s “The Patient Lens” blog series, where I discussed the challenges of diabetes stigma and misunderstanding, as well as the need for advocacy. To read the blog post, please see here.
HealthiVibe does great work for patients, and for the healthcare community at large, by representing the human voice in medicine with an emphasis on the importance of clinical trials.
I am of the opinion that participants in clinical trials are of the very bravest and selfless amongst us. Those of us currently taking medication owe our improved quality of life to clinical trial participants who stepped up and said “We’re willing to do this” when these medications were being tested.
Thank you to HealthiVibe, and to clinical trial participants, for all that you do.
“to attempt to do or accomplish”
“to put to a severe test”
“subject to strain, as of endurance, patience, affliction”
“to attempt to open (a door, window, etc.) in order to find out whether it is locked: Try all the doors before leaving.”
“the feeling or condition of being afraid.”
I fear spiders.
I fear insulin- too much and too little and not finding that happy medium dose.
I fear carbohydrates- too many or too few.
My biggest fear, though, is misconception.
If something “bad” ever happens diabetes-wise, others might think that I didn’t try.
This is why,
despite the fears,
brush the spider off the car windshield.
Say a prayer and take the insulin.
Eat the carbohydrates.
Treat the lows and the highs.
Until there’s a cure, we must
“Try all the doors before leaving.”
If you have wanted to get more involved with the diabetic online community (#doc) but are not quite sure how to do so, today is a good day to dive right in. We don’t bite!
Use the hash tag #IWishPeopleKnewThatDiabetes (brought to us by Kelly @diabetesalish) to document what you want others to understand about diabetes. Advocacy starts with the first tweet, Facebook post, blog writing session, and so forth. And advocacy can happen anytime, not just today. We’d love to have you onboard!
We are all together in a great sea of blue, and if I do say so myself, blue looks good on us! Who doesn’t like watching the blue ocean waves crash along the shore? Who hasn’t wondered what goes on all the way across the pond? We all know that diabetics wake up and fight every day in every corner of the globe. That is why blue unifies us. Now it is our time to tell others about our lives with diabetes. No matter the type of diabetes, we share a universal goal of taming the diabetes beast, living well, and supporting each other. We dream of a cure together. We know that the potential for a cure is there. We want future generations to speak of diabetes as a mythical monster that some brave souls once crushed into the soil, never to hear from it again.
There are plenty of wonderful research and advocacy endeavors going on right now. We all have our personal favorites and I encourage any cause that lessens the burden of this disease. Today, I ask you to take a moment to look at the Faustman Lab at Massachusetts General Hospital. For those of you who do not know Dr. Faustman, suffice it to say that she is a phenomenal, witty, kindhearted, passionate human being first and foremost, and these qualities make her an innovative doctor. I am a bit biased, but I would love to see her cure this disease.
If you are unfamiliar with the Faustman Lab, please check out their website at faustmanlab.org. If you are looking for a new cause to support, forego your morning cup of coffee and instead send a few dollars to Faustman Lab. If you already support the Lab, please continue your support. The research is promising, the process is not invasive, and the team behind it is fully dedicated to conquering autoimmune disease. I am not a scientist, but I believe solving the complexities of one autoimmune disease will be to the benefit of many other diseases, whether defined as “autoimmune” or not. The more we understand about the malfunctioning of the human body, the better.
Thank you for your support, and I truly hope that everyone enjoys World Diabetes Day 2014 whichever ways you choose to celebrate. May your blood sugars be stable, your bodies and minds able, and your hearts basking in the glow of the diabetes “label”- for this one day, at least. Own it!