Today marks 25 years with type 1 diabetes. 25 years since I was whisked away from all of my friends to jump a hastily booked flight across the Atlantic, back to the States, to fly overnight and alone with a disease I knew little about and which I thought was probably terminal.
I was shocked, devastated, confused, afraid, and lonely.
The shock faded first, and though it tended to return in fits at unexpected times, it quickly retreated each of those times. The devastation slowly receded as I realized bit by bit that I'd still be able to do a lot of things. The confusion still visits quite often, 25 years later, but it's a familiar visitor, and one usually brushed easily aside, because even when blood sugars are wacky despite confident carb counts, ratios, and rates, I now know that sometimes they just don't follow predictable rules, yet I have to move forward with the rules immediately anyway, so the confusion needs to be dismissed. The fear diminished too, over the early months and years, as the daily (hourly?) work of diabetes became routine and commonplace.
Loneliness turned out to be the toughest foe. It was the least expected, and it was the most persistent. However, in just these past 3 years, I've taken the upper hand, with my newly discovered secret weapon: the diabetes online community and a combination of virtual contacts and face to face meetings, the latter only possible because of the power, organization, and commitment of the DOC as an online force that occasionally but necessarily goes beyond online to in-person. I didn't know that I felt lost without it because I didn't know that it was missing or that it existed. Now I know what a crucial part of my diabetes self-management it is and I am grateful for the many new friends and shoulders it has brought.
My great regret is that though those who know it love it, there seems to be little similar recognition among most healthcare providers, and this keeps it from being introduced to most patients and their families, for the healthcare providers are usually the place most people turn for support resources. So during these next 25 years, while I await the cure that I was assured would arrive 15 to 20 years ago, I plan to conduct some of the research that will validate the DOC and bring its existence and its benefits to the consciousness of the healthcare community, and in so doing extend its many opportunities and promises to the vast majority of patients who don't know it's out there or what it can do. My wife is dedicated to partnering with me in these efforts, as are many in the DOC who have pledged their support. You know who you are, and I am grateful. Together we can do this work, and maybe those countless others can have just some of their shock, devastation, confusion, fear, and loneliness diminished more quickly and more substantially than they were for me until now.
Saturday, May 10, 2014
Thursday, May 8, 2014
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This post has little or nothing to do with diabetes. It has to do with me at work, outside my usual wheelhouse. Oh, and I happen to have diabetes.
I gazed at the withering man, taking in the clinical information I needed through my eyes alone. His drawn skin, stretching over hollowing cheeks. His unfocused gaze. His well defined muscles gave away his substantial strength, but his arms themselves, much too long, gave away that those same muscles were far weaker than they had been up until this point in his life. I leaned over the hospital bed and placed my stethoscope gingerly on his chest. I closed my eyes to isolate my hearing, as I often do, listening for the sounds his still-strong heart was producing. I heard the familiar sounds of a cardiac monitor beep-beep-beeping in that muffled way they assume when the earpieces seal well in your ears.
But that cardiac monitor was sorely out of place. I opened my eyes suddenly, to verify that I was, in fact, not in a hospital, but in my patient's home. I hadn't heard the rhythmic sounds before, the sounds made by the rumbling clothes dryer as it clink-clink-clinked a button against the dryer wall, and I caught myself being too clinical when I needed to be less. I had to ease the suffering of a dying man and his reeling family, each in various stages of acceptance, denial, and coping with great change. I quickly wrapped up my exam, checking for swelling and for pressure ulcers, and I shifted my focus.
As I sat by his bedside and he told me stories of his childhood, his sister came over to hear. "I need to get the details of this story straight," she said. "I've always relied on him to tell these stories, but I have to learn them quickly now so I can carry them on."
I looked around as I listened. The hospital bed was set up in the side of the living room, by the large window. A cathedral ceiling rose over his head and drew his gaze most of the time I was there. His sister's cigarettes and lighter lay gently on the armrest of the couch across the room. His wife wrung her hands slowly and discretely as she hovered, lovingly, not knowing how to help or what to do for this man beyond her ability or mine to fix, only to comfort. A young girl--four? five?--giggled from the other hallway, chattered and giggled and giggled some more, before I realized there were two girls making those noises. This brought a thin but definite smile to his lips, each time the sweet sounds of his giggling granddaughters bubbled down the hall.
He was very weak today. His wife told me it was because he had insisted on a walk across the street yesterday, to see the creek. While they were out, struggling to help him walk, a storm came quickly, and they got caught in the rain as they walked him back to the house. He slowed down, lingering outside. He always loved the feeling of the rain coming down on his skin, they told me. He smiled at that too, but with melancholy this time.
His wife and I excused ourselves to the kitchen, where we talked about his medications--which ones he'd no longer need, which ones would make him more comfortable, and when and how much to give. She was very worried about the medications, but I assured her that there was really nothing she could do to hurt him. I explained that our sole focus at this time should be on easing any discomfort to the best of our abilities. We wouldn't be able to prevent all pain or confusion, but we'd minimize them as best we could.
I went back to sit with him once more, to hear another story of his ancestors, and to glean all I could from my rare visit to a patient's home.
The circumstances that led me there, rather than him to my office, were quite unique. It was the first home visit I had made in 10 years. The very first on my own. The others (all four of them) had been in medical school and residency.
The patient was grateful (not why I did it), as was his family (not why I did it). I did it because it was what he needed at that time. But it was transforming for me. More than almost anything else I do, it came with the knowledge that I truly and fundamentally changed the experience of his dying and was able to bring comfort in ways not so accessible in the office or in the hospital. I didn't follow any clinical practice guidelines. I didn't use any checklists. I didn't have an electronic medical record. I just had my stethoscope and a pen, and I didn't really need them, either.
I have to make this happen more often.
On my way in, his sister had shut a laptop that was open on a bedstand near his head. As I walked toward the door on my way out, she opened it again, and gospel music began to play, following me through the door, to my car, and lingering in my ears, slowly fading as I drove away along the creek across the street.
I take comfort in knowing that the gospel music was still playing there when he took his last breath this morning.
I gazed at the withering man, taking in the clinical information I needed through my eyes alone. His drawn skin, stretching over hollowing cheeks. His unfocused gaze. His well defined muscles gave away his substantial strength, but his arms themselves, much too long, gave away that those same muscles were far weaker than they had been up until this point in his life. I leaned over the hospital bed and placed my stethoscope gingerly on his chest. I closed my eyes to isolate my hearing, as I often do, listening for the sounds his still-strong heart was producing. I heard the familiar sounds of a cardiac monitor beep-beep-beeping in that muffled way they assume when the earpieces seal well in your ears.
But that cardiac monitor was sorely out of place. I opened my eyes suddenly, to verify that I was, in fact, not in a hospital, but in my patient's home. I hadn't heard the rhythmic sounds before, the sounds made by the rumbling clothes dryer as it clink-clink-clinked a button against the dryer wall, and I caught myself being too clinical when I needed to be less. I had to ease the suffering of a dying man and his reeling family, each in various stages of acceptance, denial, and coping with great change. I quickly wrapped up my exam, checking for swelling and for pressure ulcers, and I shifted my focus.
As I sat by his bedside and he told me stories of his childhood, his sister came over to hear. "I need to get the details of this story straight," she said. "I've always relied on him to tell these stories, but I have to learn them quickly now so I can carry them on."
I looked around as I listened. The hospital bed was set up in the side of the living room, by the large window. A cathedral ceiling rose over his head and drew his gaze most of the time I was there. His sister's cigarettes and lighter lay gently on the armrest of the couch across the room. His wife wrung her hands slowly and discretely as she hovered, lovingly, not knowing how to help or what to do for this man beyond her ability or mine to fix, only to comfort. A young girl--four? five?--giggled from the other hallway, chattered and giggled and giggled some more, before I realized there were two girls making those noises. This brought a thin but definite smile to his lips, each time the sweet sounds of his giggling granddaughters bubbled down the hall.
He was very weak today. His wife told me it was because he had insisted on a walk across the street yesterday, to see the creek. While they were out, struggling to help him walk, a storm came quickly, and they got caught in the rain as they walked him back to the house. He slowed down, lingering outside. He always loved the feeling of the rain coming down on his skin, they told me. He smiled at that too, but with melancholy this time.
His wife and I excused ourselves to the kitchen, where we talked about his medications--which ones he'd no longer need, which ones would make him more comfortable, and when and how much to give. She was very worried about the medications, but I assured her that there was really nothing she could do to hurt him. I explained that our sole focus at this time should be on easing any discomfort to the best of our abilities. We wouldn't be able to prevent all pain or confusion, but we'd minimize them as best we could.
I went back to sit with him once more, to hear another story of his ancestors, and to glean all I could from my rare visit to a patient's home.
The circumstances that led me there, rather than him to my office, were quite unique. It was the first home visit I had made in 10 years. The very first on my own. The others (all four of them) had been in medical school and residency.
The patient was grateful (not why I did it), as was his family (not why I did it). I did it because it was what he needed at that time. But it was transforming for me. More than almost anything else I do, it came with the knowledge that I truly and fundamentally changed the experience of his dying and was able to bring comfort in ways not so accessible in the office or in the hospital. I didn't follow any clinical practice guidelines. I didn't use any checklists. I didn't have an electronic medical record. I just had my stethoscope and a pen, and I didn't really need them, either.
I have to make this happen more often.
On my way in, his sister had shut a laptop that was open on a bedstand near his head. As I walked toward the door on my way out, she opened it again, and gospel music began to play, following me through the door, to my car, and lingering in my ears, slowly fading as I drove away along the creek across the street.
I take comfort in knowing that the gospel music was still playing there when he took his last breath this morning.
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