Ok...that's a pretty big statement, and I know a lot of you are going to say, "Who the @#%! does she think she is?! My pain is off the charts!" but hear me out. Pain truly sucks, and to be honest, infertility comes in a close second to pain as one of the suckiest parts of having this disease. I'm thinking of something that is less tangible, something that we all face while living with a chronic illness, and something that can oftentimes go hand in hand as the hardest thing for others to understand.
Dependability.
Dependability.
"Whoa, we got a unique thought here!" you might say to yourself sarcastically, but seriously. I've been living with this disease for 16 years, and have had more episodes of pain in my life than I could possibly recall (not that I'd want to). Living my life today, Wednesday, November 5th, 2014, that episode of excruciating pain that first landed me in the hospital nine years ago (though permanently etched in my brain because a super hot EMT (sorry, Jimmy) had to look at my *ahem* sick *ahem* in the bathroom before lifting my only-wearing-a-tshirt butt off the hall floor (while my cat was climbing all over paralyzed-by-pain me) doesn't necessarily have a lot of significance. Sure, it's an important incident to mention to doctors, but that cyst and kidney stone are no longer in my body, nor do they throb from time to time. That day is gone, as much as any major day can be. However, my dependability that week is a mark on my record, so to speak. All the days I called out sick, cancelled with friends, didn't show up to a birthday or bridal shower, spent the day hopped up on pain pills and screaming in my bed...those days are remembered by the people I let down.
"Oh, you shouldn't feel that way! You couldn't help it!" That's easy to say when you understand the disease, or are reading about it in your office while you snack on whatever was in the break room. To all my employers, friends, family members, however, those days mean something: I can't count on Kelsey. She's great...when she's here. Granted, I work my butt off to be the best friend/daughter/wife/cousin/sister-in-law/employee I can be, but however kickass I might be when I do show up, my absence is remembered far more intently.
I'm lucky enough to have built a flexible career that I love, if not always what I had envisioned for myself, it works. Yesterday, however, when I arrived at work feeling under the weather and talked to the family I nanny for about going home, I felt that unmistakable feeling of disappointment. Unbelievable amounts of understanding, compassion, and friendship, yes...but disappointment. And worst of all, disappointment in the little boy I care for.
I've had an unforgettable year, health-wise. Three surgeries have equaled nearly nine weeks of missed work, and I am still dealing with the fallout of having gone under general anesthesia three times in six months, as well as two of my digestive organs being removed (ZERO immune system, but that's just my own speculation). Everyone I speak with understands that I've been through hell and back, and that I need special understanding when it comes to showing up for work, etc. That doesn't erase the disappointment when I call in sick or in pain, once again. I admittedly push myself harder than I should, and perhaps I should have taken off more than a month after my last surgery...but I hate this! I hate being sick, I hate staying home, I hate disappointing people, but especially disappointing myself!
In high school, I received an award for dedication to my dance team, which basically meant I showed up for everything. Nowadays, no one's giving me that award. HA! I may feel dedicated, but my body makes sure I take the "me time" I so desperately need, whether I want to or not. It's infuriating to be living in your body, knowing the potential your spirit and mind could achieve if only this infernal body would get its act together and stay healthy for more than a month at a time! This is nothing new. Most everyone who is reading this is nodding their head, maybe whispering, "YES!" under their breath. Unfortunately, that doesn't change things, does it? As much as I identify with you, and you with me, that doesn't change the world and its expectations of using just a few sick days a year, with advance notice.
I drove my sorry butt home from my failed attempt at going to work with tears in my eyes, frustration bubbling to the surface, and the sad, tiny, defeated part of me taking advantage and shouting, "Just go on disability already! At least short term, quit your job and just stay home!" Then, the far more powerful, prideful part of me shouted back, "Oh shut up! I love my job, I love my kiddos, I love my families, and I don't want to lose momentum!" Admittedly, it would be defeat to stop working and accept that my body can't pull its weight in society. I wanted to change the world, nurture young minds, and proudly answer the question that always comes up when meeting someone for the first time (So, what do you do?) with, "I'm a teacher!"
But I'm not.
Right now, anyway. I introduced myself the other night, sitting in a room with other couples hoping to adopt, as a "former teacher." Because I don't teach right now. I nanny. I nanny on a flexible schedule, one that allows me to miss nine weeks of work and grudgingly call out sick when I need to, and one that in all honesty I should probably still hire my own personal backup given the amount of time I've missed this year. While I love my job, I hate that feeling of unfulfilled potential. Not using my masters degree I worked my butt off to achieve. I have lofty plans of being a reading consultant, but as of now, that's not what I'm doing because I haven't had the time to invest into it.
Dependability.
Chronic pain is a bitch, but the hardest part, at least for me, is letting people down...myself included.
"Oh, you shouldn't feel that way! You couldn't help it!" That's easy to say when you understand the disease, or are reading about it in your office while you snack on whatever was in the break room. To all my employers, friends, family members, however, those days mean something: I can't count on Kelsey. She's great...when she's here. Granted, I work my butt off to be the best friend/daughter/wife/cousin/sister-in-law/employee I can be, but however kickass I might be when I do show up, my absence is remembered far more intently.
I'm lucky enough to have built a flexible career that I love, if not always what I had envisioned for myself, it works. Yesterday, however, when I arrived at work feeling under the weather and talked to the family I nanny for about going home, I felt that unmistakable feeling of disappointment. Unbelievable amounts of understanding, compassion, and friendship, yes...but disappointment. And worst of all, disappointment in the little boy I care for.
I've had an unforgettable year, health-wise. Three surgeries have equaled nearly nine weeks of missed work, and I am still dealing with the fallout of having gone under general anesthesia three times in six months, as well as two of my digestive organs being removed (ZERO immune system, but that's just my own speculation). Everyone I speak with understands that I've been through hell and back, and that I need special understanding when it comes to showing up for work, etc. That doesn't erase the disappointment when I call in sick or in pain, once again. I admittedly push myself harder than I should, and perhaps I should have taken off more than a month after my last surgery...but I hate this! I hate being sick, I hate staying home, I hate disappointing people, but especially disappointing myself!
In high school, I received an award for dedication to my dance team, which basically meant I showed up for everything. Nowadays, no one's giving me that award. HA! I may feel dedicated, but my body makes sure I take the "me time" I so desperately need, whether I want to or not. It's infuriating to be living in your body, knowing the potential your spirit and mind could achieve if only this infernal body would get its act together and stay healthy for more than a month at a time! This is nothing new. Most everyone who is reading this is nodding their head, maybe whispering, "YES!" under their breath. Unfortunately, that doesn't change things, does it? As much as I identify with you, and you with me, that doesn't change the world and its expectations of using just a few sick days a year, with advance notice.
I drove my sorry butt home from my failed attempt at going to work with tears in my eyes, frustration bubbling to the surface, and the sad, tiny, defeated part of me taking advantage and shouting, "Just go on disability already! At least short term, quit your job and just stay home!" Then, the far more powerful, prideful part of me shouted back, "Oh shut up! I love my job, I love my kiddos, I love my families, and I don't want to lose momentum!" Admittedly, it would be defeat to stop working and accept that my body can't pull its weight in society. I wanted to change the world, nurture young minds, and proudly answer the question that always comes up when meeting someone for the first time (So, what do you do?) with, "I'm a teacher!"
But I'm not.
Right now, anyway. I introduced myself the other night, sitting in a room with other couples hoping to adopt, as a "former teacher." Because I don't teach right now. I nanny. I nanny on a flexible schedule, one that allows me to miss nine weeks of work and grudgingly call out sick when I need to, and one that in all honesty I should probably still hire my own personal backup given the amount of time I've missed this year. While I love my job, I hate that feeling of unfulfilled potential. Not using my masters degree I worked my butt off to achieve. I have lofty plans of being a reading consultant, but as of now, that's not what I'm doing because I haven't had the time to invest into it.
Dependability.
Chronic pain is a bitch, but the hardest part, at least for me, is letting people down...myself included.
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