K. Diane George

@diane-george-2 | contributor
“‘When I grow up,’ I tell her, ‘I too will go to faraway places and come home to live by the sea.’ ‘That is very, well, little Alice,’ says my aunt, ‘but there is a third thing you must do.’ ‘What is that?’ I ask ‘You must do something to make the world more beautiful.'” –Miss Rumphius by Barbara Cooney. Fiber artist, librarian, plant mom, writer, and invisible illness warrior trying to find a way to make the world more beautiful.

Why It's Hurtful to Love Someone 'in Spite of' Chronic Illness

Please don’t love me in spite of my illness. Between sick-lit, well-meaning friends and family, I have been told since my early years that I will find someone who loves me “even though I am sick.” Even though I am sick and I will never fully get better. Even though I am sick and it is possible I will only get worse. I wish I could go back to my pre-teen years. The years when I was just diagnosed and trying to process being sick alongside going through puberty and dating. I would go back and tell the younger version of myself that I am not less of a person for being sick.   I would tell young me that we don’t owe anyone anything – that we don’t need to be a martyr in our relationships because we don’t feel like we’re deserving of love. We are. Everyone deserves to be loved. I would do what I could to convince that gawky girl, who didn’t understand why she required 12+ hours of sleep a day, that she isn’t a burden. I would go back to stop myself from dating boys who told me I was lazy and worthless. “You are not your body,” I would say. “There are so many more things that make up the incredible creation that is you than this physical form.” Call it a soul. Call it consciousness. Call it light. Don’t love me in spite of my illness. “In spite of” makes me feel less than – less than a woman, less than whole, less than enough. “In spite of” sets a scale on the table where we both are weighed by the annoyances and grievances and deal-breakers of the other and my side is already tipping lower than yours. With the disadvantage of illness, I’d have to work to make sure my good qualities, achievements and daily behavior compensate for an aspect of my person – that is entirely out of my control – enough that I become worthy of your love. Will my fainting spells outweigh the fact that you chew your fingernails when you’re nervous? Will all of my doctor visits weigh more on the relationship than your parents visiting? Am I too much? Don’t you dare love me in spite of my illness! Love me for my mind, even when it’s foggy. Love me for my heart, even when my illness makes it beat too fast. Love me for my words, even when I can’t remember the one I meant. I think people with chronic illness – as well as mental illness, who are disabled, etc. – are continuously fed tales in the media and in daily micro-aggressions about how we are a drain: on society, on the health care system and in our families. We pretend to be healthier than we are because we run the risk of appearing too sick or not sick enough to present ourselves the way we do in public. We smile and say things are fine even when they are so obviously not fine. It is too easy for us to isolate ourselves from those who love us the most because we do not want to be the burden we are repeatedly told we are by society. It took me years to realize why being told “I will be loved one day, in spite of my illness,” normally said by someone who truly meant well and whom I love, hurt so much. It hurts because it tells me they do not see me as a whole person. They see me marred by disease and ultimately unworthy of the love I could/would be receiving if not for my illness. Any potential partner is then automatically relegated to “martyr” status for having the courage and strength to love me despite that giant fluorescent sign screaming “ sick person ” over my head. So for all you well-meaning family members and friends who have said this to me: I still love you in spite of your incredible insensitivity to what amounts to just one aspect of who I am. There is an English poet, David Whyte, who illustrates a concept he calls “the arrogance of belonging,” which Elizabeth (Liz) Gilbert discusses at length in a section of her nonfiction guide to creative living, “Magic Lessons.” I wanted to end this article with a quote from David Whyte that Liz referenced because hearing her talk about the arrogance of belonging switched a light on in me. I honestly believe everyone is worthy of love, and human connection and compassion should be the driving force of all of our lives. It is important we also extend that compassion to ourselves. At the panel I was in the audience for, Liz posed a question along these lines to us, “Who do you think you are, in all of the history of humanity, that you feel that you deserve to suffer alone, separate from the rest of us, and are unworthy of being loved? The fear of not belonging is intrinsically human.” We belong in this world. We are worthy of love that is not conditional on our health. We are already loved. “…It’s interesting to think that no matter how far you are from yourself, no matter how exiled you feel from your contribution to the rest of the world or to society – that, as a human being, all you have to do is enumerate exactly the way you don’t feel at home in the world – to say exactly how you don’t belong – and the moment you’ve uttered the exact dimensionality of your exile, you’re already taking the path back to the way, back to the place you should be. You’re already on your way home.” – David Whyte We want to hear your story. Become a Mighty contributor here. Thinkstock photo via jacoblund.

POTS: The Hummingbird Caged Within My Heart

A hummingbird is living inside my chest. She has built a nest inside my rib cage. Some days she is content to flit around at home, and I barely register she’s there, flying. She’s always flying it seems. Once, when I was little, I heard that hummingbirds stay in flight even while they are asleep. I’m not sure if that is true. The hummingbird’s wings beat life into my body so, if not, she must be the exception to the rule. I heard once that the hummingbird has the fastest heartbeat of all animals. That one is true. A hummingbird heart can beat up to 1,200 beats per minute (bpm) during flight, 200 bpm at rest. It would be over-dramatic to say that I can relate. Sometimes, though, I imagine that I’m a hummingbird, too. If I were, my body would be considered normal for my species. There are days when my heart beats too fast. When the hummingbird has set her mind to break free, and I can feel her ramming her little bird body against my chest wall, beating her wings frantically. Help. Help. Help. It feels like she’s going to burst right through. That any moment she’s going to rip through my skin as if it was tissue paper. She’ll thrust into the sky, and, without her, my body will merely ride the waves of air from her wake straight to the ground. The reality is both more and less violent. My heart stays put, but I’m out in public waving my arm in front of me reaching and trying desperately to prop myself up or grasp onto something because I am losing my vision. I know what happens when black spots crawl out from the corners of my eyes and I have only a few seconds to act before my body revolts. The hummingbird’s cry has spread to my legs and arms. They jerk and spasm. I can aim them in a general direction, but I cannot see where to put them, which does little good for me if I haven’t found a safe place to land yet. I don’t want to hit the ground. I don’t want to be the lady who faints at the graduate reception or work or on the sidewalk, alone. I sweat, and I shake. I hear echoes of the world around me but mostly just the ringing of the hummingbird’s battle cry. It sounds like a chime choir at Christmas. Even when I fall down, I guess I technically win, the hummingbird didn’t escape. I leave the scene of the battle as quickly and as discretely as possible. Most days the bird’s attempts to escape are less intense, more predictable. When the bird throws herself against my chest, my hands shake. My body shivers. A part of me is always a little afraid. I avoid stairs; I avoid walking, When walking is unavoidable, I have to lean or hold onto things, and so much energy is spent concentrated on merely keeping my balance. I’ll mutter soothing words to try to calm the little bird, because I know that she, too, is afraid. Just breathe. Breathe. Breathe. I don’t want a hummingbird in my chest. She wants to fly, and I want to be able to hike and run and soar again. There are days when it is a struggle to make it from the bed to the bathroom. There are days when I can pass as healthy – when I get nasty looks for taking the elevator to the third floor as a young, skinny apparently able-bodied person. There are days when I can take the stairs and days when I only think I can. The days when you find out you’re not capable of doing what you felt you possessed the spoons or the energy for are the hardest. I have postural orthostatic tachycardia syndrome (POTS). If I am trying to diminish the condition, I’ll joke that POTS causes me to sometimes faint if I stand up too fast. That isn’t what it’s really like at all. My heart jumps more than 30 bpm from its current rate if I go from lying down to sitting, or from sitting to standing. Sometimes it’s well over 100 bpm even while I’m just at rest. I have hot flashes and cold flashes. I’ll sweat with no activity. My body will transform the act of trying to shuffle from my bed to the bathroom into a marathon. If I drop something on the ground, there’s always a moment where I have to check in with my body and consider whether reaching down to pick it up will cause me to collapse. If there is a chance I’ll go down, an internal debate ensues on whether that pen or my phone or my keys are worth that risk. I have gotten quite adept at scooping things up with my feet. I would never name my hummingbird “POTS,” but having a hummingbird that lives inside my chest is the best way I know to convey how it feels living with POTS. You cannot blame a caged bird for wanting to be free, nor can you predict how or when it will try to escape next. It’s not the hummingbird’s fault. I also wish I were free. We want to hear your story. Become a Mighty contributor here . Thinkstock Image By: berdsigns

What I Mean When I Say 'I Am Functioning' as a Person With Illness

I had an odd interaction with a man I went to school with the other day. He was expressing his frustration at his experience with chronic illness and struggle with depression, and when he asked me about my chronic illness, the conversation went something like this: Him: “I’m struggling with A, B, and C. Every day is a horror.” Me: “Most days I can function, but it’s been hard, and I’ve been struggling.” Him: “Well, at least you’re able to function, I can’t even do D, E, or F.” Many things stood out to me about this interaction. The first was that I had not spoken to this man in over seven years, had no idea what prompted him to reach out to talk about his illness to me (as I don’t post on social media about my chronic illness), and didn’t know him very well even while we were at school. The second was that the conversation was turning into a Deadpool-style pissing match between Wade Wilson and Vanessa Carlysle about whose life was worse, and I had no desire to participate. The third was that for me, the admission that I was only able to function most days was a big thing for me to admit, and he dismissed it entirely. He wrote my experiences and my struggle off because I had said that I am functioning. I do not speak to this man anymore, but this conversation stuck with me. What does it mean to be functioning? What does it mean to be functional? What do I mean when I say that I am functioning, as a person with chronic illness? I can only speak to my experience and my measures of how my body is or is not behaving compared to its previous levels of performance. If your body functions at different levels or your measures for functioning are completely different, it is not my intention to in any way diminish or dismiss your experience. When I say “I am functioning” I mean that I am getting oxygen. I have severely impaired diaphragm function which, if sticking to the present course of depreciating 10 percent each year, means I will likely need mechanical help to breathe within the next five years at the latest. As a child I admired the Bionic Woman and, especially in the moments when I struggle to breathe, I am more looking forward to than afraid of this prospect. Some days are significantly easier for me to breathe than others. On good days, I can go up a flight of stairs or walk long distances. On bad days, my body is functioning enough to get oxygen. When I say “I am functioning” I mean that I am able to eat. This is not to say I can make myself food. I stock the freezer with meals I made on a good day like a squirrel in autumn, but even on functional days, I am not always able to make it to the microwave. Even on functional days, I may have no appetite or have incredible nausea that requires me to eat small, bland meals. There are spans of time where I may be mentally but not physically aware that I should be eating, and I am merely functioning according to my programming. There are days when I have to rely on others to bring me food because I am utterly unable. When I say “I am functioning” I mean I can make it to the bathroom without help. On my worst days with postural orthostatic tachycardia syndrome (POTS), I struggle just to sit up, nevertheless stand, without losing consciousness or control of my body. The days where I am only functioning, I have to mentally prepare myself for the exertion that is walking to the bathroom and then walking back to wherever I was planted. Some days I crawl. When I say “I am functioning” I mean that I can dress myself. I can dress myself, but it can take anywhere from 20 minutes to well over an hour. I mentally plot out where the items of clothing are that I need to wear and chart out whether I can cross the room and stand long enough to put on clothing. On my least functional days, I have to dress from the floor. On my very least functional days, I simply wear whatever I had been wearing for however long I end up wearing it. Up until the conversation that I had with this relative stranger about my ability to function, I had never realized how low I had placed the bar for what I meant when I said I was functioning. For me, functioning does not equate thriving; it is the minimal amount of self-sufficient exertion to survive. For me, functioning does not even bring working part or full-time, taking care of children or pets or other loved ones, or maintaining relationships into the picture. For me, saying I am only functioning is the loudest cry for help I know. I grew up minimizing my experiences to take up as little space as possible. I had this warped perception that no one cares if you are sick, only if and when you were expected to get better. That no one wants to hear your complaints, that complaining about symptoms was more akin to crying wolf than needing to have your invisible struggles seen, than needing to be seen. I have been lucky enough to have a well-meaning, supportive family. I have been privileged enough to afford a therapist who understands chronic illness when I was at my least functional. Most days I am functioning. Over the last year, flares notwithstanding, I have been more than just functioning, I’ve been functioning pretty darn well. I have found my home somewhere in between the realms of functioning and thriving; we could call that place living. I live with chronic illness every day. I am taking my life one day at a time. I am trying my best. I am optimistic that the days for thriving are just around the corner. I am not the only one. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by lolostock