Earlier today, my friend Chuck posted an article on his Facebook wall originally published by The Mighty. The Mighty is a website devoted to content that educates, inspires and connects readers who struggle with chronic illness or who care about those that do. The article discusses the kind of situation that usually precedes the moment when a person with a chronic illness decides to post about his or her experience (at any given moment) on Facebook. While scanning the piece, I found myself nodding. Then crying. Then clicking out of the article.
A few paragraphs in, the author asks the reader to imagine going about his or her daily life only to stumble upon a point in time when your body begins to betray you. Among the consequences of the betrayal, the piece explores the reality of when "You start sleeping a lot more, so much more that you start to feel guilt over your “laziness.” Even after a full night’s sleep your body starts to shut down in the middle of the day and you need to nap. The thing is all this extra sleep doesn’t help and you are just as tired and fatigued when you wake up in the morning as the night before. Even worse, you feel hungover... Along with all of this (and a myriad of other symptoms I could mention) is the fact that your mind and your thinking are as foggy as your body. You know that feeling when it’s past your bedtime and you feel your brain trying to shut down for the night? How everything becomes difficult if you are fighting sleep? Trying to just finish that chapter, watch the last 10 minutes of that movie as your brain wants to sleep… Now it feels like that all the time, all hours of the day as your brain is constantly trying to go down as you are trying to get it to go up. Every waking moment is a battle."
I couldn't read any more beyond this. I have been back at work for six months now... and I can't stress enough just how hard it is proving to be. My brain and body can't handle it. And because having debilitating fatigue and "Lupus brain" is keeping me from being able to execute the "essential functions of the job" I am being increasingly told that accommodations for it are not "reasonable" and are therefore not legally guaranteed. But I can't quit my job or risk being fired because I need my health insurance. So, I am running my body and mind into the ground. This morning, I got out of bed and found myself praying, on my knees, for some solution. For some salvation.
I began to dig into my day. Wading through mud and wind and hail just to get a few tasks clicked off. After taking a short rest (which did leave me feeling just as tired and even more defeated than when I woke up... did I mention it is only MONDAY?) I opted to give my brain a little break and cracked open one of the books I'm reading. Now that I'm done with the Chernow Hamilton biography, I am finally allowing myself to become consumed by the show. "Hamilton: The Revolution" is a gorgeous book complete with color photos, interviews, a history of the creative process and the complete libretto. I turned to the song I have just begun to dissect ("My Shot") and began to read. When I came upon the lyrics, "When you're living on your knees, you rise up" I stopped cold.
Truth. Truth. Truth.
I have not only met but been profoundly affected by individuals in my life who have opted not to rise up. Who have chosen to live on their knees mentally and emotionally rather than find anything within them that inspires and allows them to move forward with intention, grace, hope and determination. I have always found a way to "Rise Up" because that is what you do if you have sparks of life left within you.
I haven't been living on my knees, but I have been getting very close lately. I don't know exactly how to rise up when my body is crying out to me to remain still and quiet so I can heal. But I do know that I have it within me to try. And that, is a prayer answered.
Monday, February 6, 2017
Wednesday, January 11, 2017
Tunics and Tweens
(My apologies for being MIA these past few weeks. Holidays and feeling tired have been sapping my energy... nice to "see" you all again though!)
This past Saturday morning, I wanted to go for a walk. But it was something like negative 20 degrees with the wind chill, so I was not in a position to walk outside. As a result, Mark and I decided to go window shopping at the Mall of America. I am at that point in Project Jellybean where catching glimpses of babies, kids and even tweens makes me cry. It isn't all bad, though. At the mall, each new little person I encountered inspired happy tears... I think because I am just overwhelmed by the reality of the circle of life (do NOT cue Lion King music... I am a Tangled/Moana girl, myself).
Around lunch time, I came upon what I assume was a mama and her twin daughters. They were both exactly the same height and had the same features. But one was clearly rocking the sterotypically feminine pink/princess vibe and the other was what I imagine Hermione Granger would have looked like as a little girl if she was Asian. Both were so endearing that I had to duck into a bathroom stall in order to cry so that I didn't freak out their mama. (Side note: If I am already this ridiculous, what is it going to be like if I am fortunate enough to deal with pregnancy hormones? Yikes...)
After lunch, I ended up actually purchasing a super soft tunic shirt on crazy clearance from Aerie (LOVE Aerie... any classy company catering to young women that refuses to airbrush their advertisements has my stamp of approval). As I was trying the shirt on in the dressing room, I was thanking God that fashions have shifted in favor of comfy styles like leggings, swing dresses and tunic tops. I am down 18 pounds (to 166 from 184) from my heaviest ever in early September/end of medical leave, but I still don't fit in the majority of my "regular" clothes. I am so insanely grateful that I can find comfortable clothing, unlike the challenging shopping realities of just a few years ago when I was first put on steroids. Because dammit, women of all sizes deserve to be stylish and comfortable at the same time! (Cue more tears... feminist ones, this time...)
Later on in the day, Mark wanted to grab some coffee, so we popped into Caribou. I was feeling pretty worn out, so I sat in an overstuffed leather chair to wait while he navigated the unreasonable wait time for a drink. As I was sitting there (already emotional due to Project Jellybean and the feminist joy/rage that is always affecting me these days... thanks 2016...) I noticed another adorable young lady. She was a "tween" who was blonde and rocking leggings and a tunic top. "HURRAY FOR EVERYTHING AND EVERYONE!" I shouted internally. It didn't even occur to me that she was feeling self conscious in her rocking outfit until I saw her staring at another tween almost certainly her same age. This redheaded tween was as thin as a rail. Lovely... not sickly looking, but REALLY thin. Our blondie was by no means obese, but she was carrying the pretty average weight of someone approaching puberty. And boy, did I recognize that look on her face as she stared at the rail-thin tween across the store. I have sisters. I have girlfriends. I was in a sorority. I am a girl. I have seen that look MANY times before.
Aaaaannnnnddddd.... the tears started welling up again. Because while I did not (again, because I didn't want to freak out her mama by getting out of my chair to cross the store in order to approach her) I wanted to tell this girl how much she was rocking her outfit and how lovely she looked to me. How it didn't even occur to me that she might be feeling self conscious inside her own skin until I saw THE LOOK. How she was so undeniably perfect just the way she was that the very sight of her had brought me joy and that I hoped the sight of herself in mirrors and store windows and calm lake water brought her joy too.
When I was a senior in college, I lost an absurd amount of weight because it was a tough year. When I graduated, I was an unhealthy (for me) 105 pounds. For reference, I look and feel my best between 118-129. I gained a lot of weight (relatively and on an already too-thin frame) in law school because all you do in law school is SIT IN THE LIBRARY until your eyes hurt so much that you have to make yourself sleep for a few hours. I graduated law school at (GASP!!!!) 138 pounds. And I felt like a COW. Granted, I have a small frame and ten extra pounds is enough to make me feel like I'm not "me." But I look back at pictures of myself from that time and I go, "Damn! You looked awesome and had a chest at the same time. NICE."
Practically everything having to do with babies, kids and tweens makes me cry right now, so getting teary watching our blond girl was not unusual. But it was unusual to feel baby/kid-related tears due to a sense of empowerment. Fertility stuff does NOT feel empowering most of the time. But knowing with all of me that a person is perfect the way she is (and that by extension, so am I DAMMIT!) is empowering.
Blondie... I couldn't tell you this to your face without seriously freaking out your mama and maybe you in the process. But I am sending you this truth across the energy that connects all of us (and please don't ignore it just because I am an emotional weirdo right now)... YOU ARE PERFECT. I know you don't feel perfect, because you are at that age where (if you haven't felt it before) you start to feel comparatively "less than" in relation to certain other people. But I promise you... you are perfect. And if sending you this truth can help you feel that in your bones even for a second, all the time and energy I have spent thinking about you and THE LOOK will be worth it 1,000 times over.
This past Saturday morning, I wanted to go for a walk. But it was something like negative 20 degrees with the wind chill, so I was not in a position to walk outside. As a result, Mark and I decided to go window shopping at the Mall of America. I am at that point in Project Jellybean where catching glimpses of babies, kids and even tweens makes me cry. It isn't all bad, though. At the mall, each new little person I encountered inspired happy tears... I think because I am just overwhelmed by the reality of the circle of life (do NOT cue Lion King music... I am a Tangled/Moana girl, myself).
Around lunch time, I came upon what I assume was a mama and her twin daughters. They were both exactly the same height and had the same features. But one was clearly rocking the sterotypically feminine pink/princess vibe and the other was what I imagine Hermione Granger would have looked like as a little girl if she was Asian. Both were so endearing that I had to duck into a bathroom stall in order to cry so that I didn't freak out their mama. (Side note: If I am already this ridiculous, what is it going to be like if I am fortunate enough to deal with pregnancy hormones? Yikes...)
After lunch, I ended up actually purchasing a super soft tunic shirt on crazy clearance from Aerie (LOVE Aerie... any classy company catering to young women that refuses to airbrush their advertisements has my stamp of approval). As I was trying the shirt on in the dressing room, I was thanking God that fashions have shifted in favor of comfy styles like leggings, swing dresses and tunic tops. I am down 18 pounds (to 166 from 184) from my heaviest ever in early September/end of medical leave, but I still don't fit in the majority of my "regular" clothes. I am so insanely grateful that I can find comfortable clothing, unlike the challenging shopping realities of just a few years ago when I was first put on steroids. Because dammit, women of all sizes deserve to be stylish and comfortable at the same time! (Cue more tears... feminist ones, this time...)
Later on in the day, Mark wanted to grab some coffee, so we popped into Caribou. I was feeling pretty worn out, so I sat in an overstuffed leather chair to wait while he navigated the unreasonable wait time for a drink. As I was sitting there (already emotional due to Project Jellybean and the feminist joy/rage that is always affecting me these days... thanks 2016...) I noticed another adorable young lady. She was a "tween" who was blonde and rocking leggings and a tunic top. "HURRAY FOR EVERYTHING AND EVERYONE!" I shouted internally. It didn't even occur to me that she was feeling self conscious in her rocking outfit until I saw her staring at another tween almost certainly her same age. This redheaded tween was as thin as a rail. Lovely... not sickly looking, but REALLY thin. Our blondie was by no means obese, but she was carrying the pretty average weight of someone approaching puberty. And boy, did I recognize that look on her face as she stared at the rail-thin tween across the store. I have sisters. I have girlfriends. I was in a sorority. I am a girl. I have seen that look MANY times before.
Aaaaannnnnddddd.... the tears started welling up again. Because while I did not (again, because I didn't want to freak out her mama by getting out of my chair to cross the store in order to approach her) I wanted to tell this girl how much she was rocking her outfit and how lovely she looked to me. How it didn't even occur to me that she might be feeling self conscious inside her own skin until I saw THE LOOK. How she was so undeniably perfect just the way she was that the very sight of her had brought me joy and that I hoped the sight of herself in mirrors and store windows and calm lake water brought her joy too.
When I was a senior in college, I lost an absurd amount of weight because it was a tough year. When I graduated, I was an unhealthy (for me) 105 pounds. For reference, I look and feel my best between 118-129. I gained a lot of weight (relatively and on an already too-thin frame) in law school because all you do in law school is SIT IN THE LIBRARY until your eyes hurt so much that you have to make yourself sleep for a few hours. I graduated law school at (GASP!!!!) 138 pounds. And I felt like a COW. Granted, I have a small frame and ten extra pounds is enough to make me feel like I'm not "me." But I look back at pictures of myself from that time and I go, "Damn! You looked awesome and had a chest at the same time. NICE."
Practically everything having to do with babies, kids and tweens makes me cry right now, so getting teary watching our blond girl was not unusual. But it was unusual to feel baby/kid-related tears due to a sense of empowerment. Fertility stuff does NOT feel empowering most of the time. But knowing with all of me that a person is perfect the way she is (and that by extension, so am I DAMMIT!) is empowering.
Blondie... I couldn't tell you this to your face without seriously freaking out your mama and maybe you in the process. But I am sending you this truth across the energy that connects all of us (and please don't ignore it just because I am an emotional weirdo right now)... YOU ARE PERFECT. I know you don't feel perfect, because you are at that age where (if you haven't felt it before) you start to feel comparatively "less than" in relation to certain other people. But I promise you... you are perfect. And if sending you this truth can help you feel that in your bones even for a second, all the time and energy I have spent thinking about you and THE LOOK will be worth it 1,000 times over.
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