Reflections on Three Years Post-Diagnosis
Diaversary Musings on Change and Choice
Today marks three years of living with type 1 diabetes.
As someone candidly stated to me the other day, I've "only been doing this" for three years, so far. While yes, it is true that I am young in my journey, so much has already been learned and lived in what could be easily dismissed as a short period of time. How can one have come so far, and yet have so much further still ago? A diagnosis of the chronic category comes with it a true crash course in every aspect of disease management, lifestyle overhaul, emotional intelligence, mental toughness, and all kinds of things you wouldn't even imagine to be a part of life with chronic illness. However, so much of it cannot truly be learned until you cross paths with it as you move ahead.
On some days, it feels like this has always been my life, but on others, I recall the 22 years of life that were not yet disturbed by type 1 diabetes. Regardless, it is difficult to believe that today marks a whole three years of life with this disease. Today, I indulge in some self-reflection, with thoughts and musings made up of mostly strong feelings that are too complex to eloquently put into words, which I attempted anyway.
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The pancreas is a major player in the endocrine system, conducting life functions necessary to our survival in the same way that our lungs just "know" to breathe. Nobody has continuous, 24/7 chats where they tell their pancreas to secrete insulin in order to unlock their cells to process carbohydrates into glucose for energy. The secretion and "unlocking" just happens, because that's the way our system was designed to work.
People like me, who live with type 1 diabetes, have a pancreas that threw in the towel in favor of early retirement. We have been left to complete their work manually, 'round the clock, to the best of our abilities, with rapidly improving yet still rudimentary tools to do so. There is not one day that goes by that I don't grow and learn and stumble and get back up again on this journey with type 1 diabetes. A recent thought I had about this reality is that every time I check my blood sugar, give insulin, eat a carefully measured snack, make choices around my health and well-being, I am making a singular choice--the choice to live.
I give thanks for diabetes (not a phrase we in the T1D community throw out there lightly or often) because it gives me the opportunity to be fully aware and completely conscious of what it takes to not just keep a body going, but to go next-level, to be alive and thriving. Our bodies work really, really hard on our behalf, all of the time. The hard work is easily let to pass by, unnoticed, until something happens (like an attack on the beta cells, for instance) that causes us to need to pick up the slack. It is only then that we realize the miracle of the human body, because we can never quite replicate the original design and function ourselves. The body (and by extension, we as individuals) are capable of incredible things...but it takes work, proactive effort, and an inner fortitude that does not quit.
I know that I have a choice. I don't have to put in all of the work to manage my diabetes. Every time I need to check my blood sugar, give insulin, change a site, exercise, or treat a low, I could just choose not to do it. It would be easy, to just let it all go and watch my life pass by as my well-being sinks like a stone into depths beyond retrieval. I could give in to the inevitable burnout in a permanent sense, and just dial it in, suffering the painful and deadly consequences as a result. After all, it is still possible that even after so carefully making all of the care decisions and sacrifices to take good care of my diabetes like I have chosen to do that the undesirable effects of the condition could still visit themselves upon me, without "cause" or mercy. So why bother, one might wonder.
The motivations are different for everyone, but for me, I have to continue to try and do and get it done because it is who I am. I have been given a chance. I have access to care, medication, tools, and a support system, something that is (devastatingly) not available to everyone with this diagnosis. How could I not give this fight everything I have? I have a choice and I will always choose life, to love and be loved, to fight and forge ahead because, to me, there really is not another option.
When I think back to the person I was on March 12, 2014, versus who I slowly, quietly, yet undoubtedly began to become on an ER gurney on March 13, 2014, I am in awe of how much a person can be changed at their core. Using the phrase "be changed" versus "can change" is an important distinction because, unlike the many times that people choose to make changes in their life, this decision was made for me, and so I was changed. It was one of those few occasions where I didn't do it, it truly happened to me.
I wonder, sometimes, if the people who know me best or even my distant acquaintances saw a change in me then, or see a change in me that has become apparent now, and if so, what it is and when they saw it. Is it evident in how I see the world and express it outwardly, or what I feel and what those feelings project?
I lost, at a pivotal time in young adulthood, the feelings of invincibility, innocence, and the simple luxuries that accompany a life that comes with so little baggage. Against my will, I traded the activities of a typical recent graduate with independence and wide open spaces ahead for dependence on continuous life support (insulin), struggles against enemies seen and unseen, from the demons of stigma and guilt to ignorant employers, barriers built by insurance companies, and the incessant parade of diabetes punchlines that score laughs from others but still leave me feeling cold.
It is not my intention to be bitter or negative, just introspective. There's a time and a place for allowing the pain to be felt, but today is a sort of celebration for me, with elements of both light and darkness. I want to celebrate what I've gained and what I've lost, what I've become and where I'm going. I want to thank the people who have been by my side, and the ones who were not, causing me damage. That damage is now scar tissue, leaving in its wake a strength tougher than anything that existed there before, better serving its purpose as gasoline on the fire of motivation than it is left to lurk in the shadows of my worst days. That pain is mine to make the most of now.
I've gained friends that are family, a voice that will not be silenced, perspective, and a sense of humor about life that may, in some cases, only be understood by others who have stared mortality deep in the eyes for themselves or on behalf of loved ones.
Three years ago today, I was diagnosed with type 1 diabetes.
Two years ago on this day, I made the decision to cut ties with the single most destructive influence in my life with diabetes, a dangerously discriminatory 8-5.
One year ago today, I wrote to you:
"I share this post with you in good health, good spirits, and with great joy. [...] I faced my own mortality, learned my own strength while I built back my own strength (really, I couldn't make it down the block at a snail's pace without rest), quit my job, founded my own business, and began to find peace and meaning in the hand I was dealt."
And on this day, I echo those sentiments from a year ago and thank you for joining in with me to celebrate this marking of not just time gone by, but of life being lived. In my first doctor's appointment after being released from the hospital, my physician told me that a cure for type 1 diabetes was imminent, within the next five years (do the math--only two more years to a cure, by this logic!). So maybe one day soon, we will instead be marking an anniversary of a diagnosis date for a disease happily left behind when a cure arrives, or perhaps I will still be marking this day, with hope in my heart, for years to come.
Come what may, I promise you this: for as long as this disease is a part of my life, and yours in whatever way that it touches you, I will advocate for awareness and a cure. I will be a source of strength and support to those who need it. With humility and grace, I have been able to get to this point in my own journey, by building upon the strength and support of others in my life, those who have come before me in the diabetes online community, and the community I've found in the flesh and blood humans that have made it their mission to do the same.
Living with illness means experiencing dis-ease, in many forms. In this case, it is chronic, with no cure. But to me, there's also life. I am living with type 1 diabetes, my constant companion. I've got T1D, but it certainly does not have me.
Let us celebrate steps in the right direction and the power to choose to take them. T1D never quits and neither will we. Raise your Diet Coke with me for a toast: to life, to life, to LIFE--be well and thrive!