Reflections on Two Years Post-Diagnosis
1,051,200 minutes. 730 days, each moment so dear. How could I measure my new life's first two years?
Two years ago on this day, I was rushed to the emergency room, brought back to life, and wheeled into the ICU with a diagnosis that would weigh heavy over every aspect of my life.
First, there was my father carrying me into the ER, nurses waiting with a wheelchair, and then nothing. I opened my eyes to a doctor warning me to stop trying to pull out the cords and tubes, my mother waiting with ice chips, and being told I could absolutely not have my pants back (remind me to tell you that story sometime...it definitely qualifies as comedic relief).
Then there again was nothing, apparently for a span of 8-12 hours, time of which I have no recollection. I awoke to my gurney being rolled into the ICU, where I would be visited by nurses every 1-2 hours for vitals, blood glucose testing, and a complete blood draw.
I was grateful not to be in the coma which one of my nurses told me I should be in after she reviewed my chart, but I do have a few regrets from my hospital stay. The first, that the nurse who told me my diabetes would "go away if I just started eating better and exercising" was right, because it would have meant the whole thing was some sort of strange fever dream where a nurse who has no understanding of type 1 diabetes has a job in a hospital caring for them. The second, that a healthcare professional would have sat down and showed me how to do a necessary and life-giving injection, instead of just tossing an orange into my weak and shaky hands for self-instruction. The third (and arguably, most important)? That I would have been conscious when the therapy puppy came around to my room. I mean, who could be sad or mad if there's a puppy on your lap?
One year ago on this day, I made the decision to cut ties with the single most destructive influence in my life with diabetes.
This was me taking control of my happiness and my future. See, when I was first diagnosed, I was led to believe that my diabetes was something to be ashamed of, something for which I should apologize. I was delivered the message, beginning with the endocrinologist in ICU (and ending the day I stopped believing the negative feedback directed my way from 8-5), that my life was never going to be good or whole again. Living with restrictions was to become my norm, if I'd listened to the naysayers.
Things were supposed to get easier with time and practice, but for the first year, it seemed life was getting progressively worse. Even after I lost my T-rex dinosaur arms (what I called my limited range of motion in my arms due to the severe bruising from needles, lines, and the grip of the ER doctors which lasted for weeks after my discharge from the hospital), my world just did not seem right. Despite a healthy HbA1c (the lab result that indicates the level of glucose concentrated in the blood over the past 3 months), my body was still weak from the severe diabetic ketoacidosis (DKA) that had ravaged my system, leading to my diagnosis. My mind and spirit were fractured by the negative experiences I was encountering within the medical establishment, my workplace, "well-meaning" strangers and acquaintances, and the deafening silence from friends that I would have assumed would be by my side in such an event. It took hard work and time to heal the wounds seen and unseen, and the support of my close family to absorb that my worth did not lie with others' perceptions of, or reactions to, diabetes.
The thing about type 1 diabetes is that it is both "manageable" and potentially devastating. Everyone reacts to that reality in a different manner. Some only see the disaster that could be imminent any second, while others keep eyes wide open to the world and their place in it, understanding the gravity of the disease without allowing it to dominate every moment of every day, but with a healthy respect for the damage it has the ability to leave in its wake. I aim to be the second. From outside of those living with it daily, T1D is certainly an enigma, mostly due to misinformation and misunderstanding. Diabetes is serious, but it absolutely does not have to be a death sentence. For me, it became a license to live. I've accomplished things I never would have dreamed were destined for me, been blessed by the friendship of individuals and families I never would have met, and begun living in a place of wonder and possibility (something I would highly recommend, by the way).
In harsh truths that I learned, or in times that we cried...in pages forced turned, knowing I almost died.
Two years can feel like an eternity in one moment, a blink of the eye in the next. My diagnosis is now far enough in the past that I can stare it in the face and inspect the details through the lens of a microscope, but also recent enough that my body recalls vividly the pain and desperation of my symptoms in the months leading up to that fateful day, and the daily trials I faced immediately afterwards. And then there is the "before" and the "after". Two giant, fragmented pieces of life. Every year that gets further into the future, further away from 2014, the "after" piece will grow, while the first 22 years of my life will float slowly back into the past and maybe eventually I'll forget what it was like "before".
In daylights, in sunsets, in hypos, and cups of diet coke. Injections, in learning, in laughter, in strife.
On this day, I share this post with you in good health, good spirits, and with great joy.
In two years, 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.
There are bad days. Goodness gracious, are there bad days. But the thing is, there are also great ones.
The good and the bad are not mutually exclusive. Sometimes they cover you hand in hand. There are days I want to kick and scream and lash out, looking to find a scapegoat to heap my anger and frustration upon. When that happens, I ask myself why.
Is it because I'm on a blood glucose roller coaster? Am I feeling limited by the needy idiosyncrasies of this disease? Is it just a terrible, horrible, no good, very bad day? Can I self-soothe into a state of calm, or do I need to excuse myself from the world for a couple of hours?
Retreating into myself (through reading, music, or a plain and simple nap) isn't just a necessary salve for my own injuries, but a protection for those I love (and who love and support me). It is not anyone's fault that my body could not tell ally from enemy when deciding to attack, so it is important to me to extend grace to those who happen into my crosshairs (loved ones, strangers, and even myself).
The important thing is that I am alive; I've been given new purpose and time with my beloved family. I honor my body for the strength it showed in delivering me from acute physical deterioration and then in the chronic aspect of my illness; I honor my heart for feeling so deeply.
Next year, I'll have another 365 days of life and diabetes under my belt, and I'll share reflections and wisdom then, but for today, I am going to be here; two years post-diagnosis with more strength and hope than I could have ever dreamt of when I was discharged from the hospital, weak, weary, and afraid of what lay ahead. Time doesn't just heal wounds, it brings potential, progress, and the dream of a beautiful tomorrow.
It's time now, to shout out, because my story didn't end. Let's celebrate, remember the strength that it took to mend. I'll continue with love, continue in love.
How do you mark your date of diagnosis? What lessons have you learned over the years from living with diabetes?