To be young and know chronic illness is not an easy thing. I work with it daily. Most people do not know until they are much older what life with chronic illness is like. It’s not easy when you’re old, but when you’re young it takes on a whole new set of issues. There’s often just the grief of not being able to do things others can do. You always have to ‘be mindful and careful of your health,’ which is something most people don’t start thinking about until they are much older. There’s a state of responsibility you carry that ‘it seems like,’ very few people around you carry. You must always be cognizant at some level of your health, your body. Chronic illness breaks this belief that we all sort of carry, “If I do everything right and check all the dots, I will get ‘this.’ The thing is life does not work in that manner. I deal with patients every day, and I know it myself, that are like, ‘I did everything I was supposed to and this is what happened?’ There’s a level of anger and sadness that go with it. Then there’s the comments. The comments that aren’t meant to ‘jab,’ but they do. “You do get sick a lot,” or a friend or family member calls, who you haven’t heard from for months and asks, ‘How are you feeling?’ It’s kindness, but it’s also a reminder that, at some level, in people’s minds, you are ‘this sick person.’ Even if the condition is contained, you spend hours at the doctor. Forget having a vacation because you’re sick time, if you’re lucky enough to have some, is spent going to doctor’s appointments because specialists don’t usually work nights or weekends. Your doctor’s visits become your vacation. Even if you have a good year, you still have to be ‘cognizant,’ and keep time in the bank because you just don’t know when or for how long your next hospital visit might be. It’s spending every free second you have at work, instead of getting a break, calling doctor’s offices frantically, to follow up on labs, schedule appointments, pay bills, find providers for the new specialist you have to see, and refute insurance claims. Often it feels like a full time job. When my patients talk about it, it’s hard for my eyes not to well up. I know the anger and frustration well. On top of that, it’s all internalized typically. You get sick more often. You have to call into work. You spend your whole sick day thinking about how people at work probably think, ‘they’re a terrible worker.’ You are in the hospital and are fighting with doctors to allow them to date your return to work letter tomorrow because it’s already been almost a week and your vacation and sick days are drying up and you can’t even imagine the amount of work that has piled up in your absence, yet you have not left bed in days. Tomorrow you will force yourself back at work for eight hours of pain and exhaustion. You will wonder what people are saying behind their niceties. It’s being the person who has to cancel plans and events that you were so looking forward to and then having someone tell you, ‘you’re not always the most dependable person.’ It’s not a cold you just need a day to ‘get over,’ it’s your life. Most people do not understand this. There are limits to what you can and cannot do, and you have to be the responsible person, at a young age, and set them. You have to learn to listen to your body, when every part of you is so tired of doing that. Then there’s the downpour of support (if you’re lucky) that comes when you get really sick. Basically, the texts, the calls, the messages from people you ‘only hear from,’ when you’re sick. It feels wonderful to hear from them and it hurts horribly when you get better and know you won’t hear from then again until you’re sick again. It literally breaks your heart. It makes you feel like, ‘they like me better when I’m sick.’ There are so many complicated feelings that go on, at any age, with a chronic illness, but they are exacerbated the younger you are. Even things like returning to work after a weekend where you just spent the weekend in bed because that is what your body needed and feeling like you have to lie to people because you don’t want to be seen as ‘sickly’ or ‘weak.’ The poem I’m sharing today I wrote at a time when my diabetes was really kicking my butt. It was the obituary of a girl, who I can’t say I really knew at all, in our high school who died shortly after high school. It was posted on a site for the class reunion. Her obituary resonated with me because it spoke to how she ‘loved to write,’ which I love to do. It talked about how as the disease progressed, she wanted to write so bad, but she was just ‘too weak.’ It broke my heart and, at the same time, I was going through a rough patch and new the feeling. I read the obituary and wished I had known this girl. I think I would have liked her. It was also a reminder of the seriousness of the disease, which when you’re feeling better, it’s easy to want to shove it in the back of your memory. It brought up a lot of emotions for me, and I wrote this poem.
Morning is nearly here. I just want to lay here, a fallow field lying here like a sacrifice. I feel like I was kidney punched. My ceramic body too weak for the kiln. There’s blood in my urine. It’s only just begun. It hits me… and hits me….. and it hits me……Realization intoxicated and behind the wheel, unable to recognize the break from the gas pedal. It won’t be long before it crashes through the structure of this home I’ve built. Hazel eyed son wrapped in a blue duvet. I read her obituary. “How did you never come into contact with her?” She is dead now. A picture to be placed on the “In Memory,” table at your class reunion. The obituary describes a girl, “who loved writing more than anything until the last days of her life. “I understand now, how the diabetes rushed in with a desire to drive its hands right through her. Hush-a-bye, honey, this poem is for you. I want to touch my pen, write about the joys of hands and lips, but I know, today, there is not the strength to carry a poem to gestation. She was a girl who lived for a life painted in words. Stanzas in every breath she ever had. Muscles ached for metaphors, but I know when we are weak and hollow it doesn’t matter anymore. I’ve been the that place before, the place where everything that is going to happen, will happen, and you are just waiting for someone to pocket you the cab fare home. I read her obituary again. The fact that her family knew her enough to write, “when her body became too tired to write, there was always a searchlight in her eyes for the the next poem she physically couldn’t find her way through the storm of the disease to.” It’s an amazing recognition of who she was. I have only my body to deal with now. How I’m understood is something that fumbled away from me years ago. The wind knocks a plant from a bedside table. Is this a deathbed scene? No one, including myself, could ever figure out what I truly wanted. Someday soon, someone in my world, someone I never imagined, will be the person to see me in a way nobody ever has. I am feeling things all the time, now that I know exactly what the unknown girl from my high school’s obituary reported she knew years ago. I always thought when I handed over my body I’d have done something interesting. Instead, I’m just tired more each day. Slowly, the few things I love that remain in-tact begin to rip. I try to pin things down like the early morning sun, a thunderstorm, the memory of kiss drifting out my consciousness. There’s no choice to release them. Lying here as the sun comes up, I think of the girl I never met. She at least let people love her in a way she was known by them and enjoyed it. I just spent my life turning into birds when I felt something I wanted… flying away. I shut my eyes. There’s only so much strength wings can muster. Every bird must land.