One of my favorite people of all time died yesterday. Some people who love her may not have received this news yet, so I won’t go into details. But needless to say, after I got the call, I sat down on my kitchen floor (still sticky from a sugary Starbucks drink I had dumped all over it only an hour or so before) and cried so hard I started to choke. Once I got my bearings, I understood almost instantly that I couldn’t just sit at home. I needed to get the hell out of there… so I went shopping for my funeral dress.
As I peeled myself off the floor, I had the ridiculous thought that “She is gone and the least I can do now is to look dignified at the funeral.” What kind of a thought is that??? I could have thought, “The least I can do now is honor her memory by giving back” or “The least I can do now is to pay tribute to her in some meaningful way” but… no. I had to embody the dumb-ass observation “When the tough gets going, the tough go shopping” or whatever that stupid saying is.
Anyway. I walked around the Mall of America in a bit of a daze for several hours. I love the MOA at Christmastime… all the lights and activity are so festive and fun. But these things become disorienting in grief. At one point, I realized that my sweatshirt was on inside-out… and only did so because an observant little girl at Starbucks asked me if I was okay. I gently told her that “I will be.” And she said, “Good. Is your sweatshirt on inside out on purpose?” I looked down and replied, “I’m not sure. But if I run into you again later, I will let you know.” (It should be noted that the sweatshirt was a hoodie. How I didn’t feel the hood inside the sweatshirt instead of out is beyond me…)
I am pretty sure that I tried on black dresses, sweaters and skirts in 50 different stores yesterday. And I broke down in hysterical grief-laughter when it turned out that the most promising skirt I tried on was actually meant to be a very short, sleeveless party dress. After awhile, I became pretty damn indignant. HOW, in the largest mall in America, are there no BLACK clothes designed to make women look good if they are not a size two? This was not a problem I thought I would have to encounter. Black is slimming, right? So, why the hell are there no black clothes in the entire mall that don’t make me want to buy my very first pair of Spanx? I am a size 10, dammit. That is NOT that big. For all of my complaining about my weight, I am NOT THAT BIG. So how is it that no stores carry anything even remotely flattering for people built like me?
And then… it happened. As I stood in front of the 50th mirror, in the 200th black dress, I heard her say my name. Just once. “Kassie Lyn.” Clear as day.
There is a time to rail about the ways in which our society treats individuals larger than a size six. There is a time to discuss body image and to ponder what appearance really means in modern America. But at that moment, I realized I was focusing on the wrong problem.
The woman I lost yesterday is the only member of my family (or close loved one, period) other than my daughter who has never made me feel that I need to be more than I am. She loved me for who I was, where I was, always. She did not have this relationship with everyone, but she had it with me. And there is little coincidence, I believe, that my first memory in life is her calling to ask whether I wanted to take ballet or tap, because she bought me my very first dance lessons. And there is little coincidence, I think, that I lost her at the period of time in my life where I am literally too self-conscious to dance anymore, even though dancing is as much a part of me as reading and writing are.
I lost a piece of myself yesterday. And because I couldn’t face that or the rest of me head-on, I went to go punish the parts of me that remain by shopping for clothes at a time I can barely look in the mirror. Which is funny, because if she were here and had her memory back, she would hug me and tell me how beautiful I am and probably swat me on the rear on my way out of the room for being self-destructive and lacking self-respect. She loved me always for exactly who I was. And she was the only one who never asked, expected or wanted me to be more than that.
I bought the dress I had on when I heard her say my name. Because she would have loved how I looked in it and something tells me that she knew it was 50 percent off. I love you. And the least I can do is honor that love by finding a way to love myself the way that you always, always did.
Tuesday, November 25, 2014
Friday, November 21, 2014
Before Gratitude was Hip
I was recently talking to Sarah, who is one of my two best friends on Earth. We are alike in many ways… primarily in those that count. However, we are dissimilar in other ways. And the ways in which we are dissimilar almost always inspire me to learn from her or to clarify my own approach.
She was telling me about how her preparations are coming along for the birth of her first child… whom I love already and am anxious to meet. Thinking about how few weeks are left until her little girl’s arrival, I asked if she was anxious about whether certain things had yet to get done. “No,” she said. “I have time.” I NEVER, EVER feel like I have time. I can recall exactly one minute in my entire life when I felt that way and it was within the first few hours after Samantha was born. Even when I was tiny, I never felt like there was enough time. Reflecting upon this fact (and trying to figure out how I can be more like my wise Sarah-girl), I stumbled upon what I believe to be the root of this issue.
When I was a very little girl, my nighttime prayers scared the crap out of me. You may be familiar with the particular prayer I was taught: “Now I lay me down to sleep, I pray the Lord my soul to keep. If I should die before I wake, I pray the Lord my soul to take.” I didn’t understand at that time that perfectly healthy little girls (whose greatest physical afflictions are frequent nose bleeds and cases of pneumonia) do not tend to die unexpectedly in their sleep. I went to bed every night thinking that I might not wake up the next morning.
Sleep therefore, did not come easy. I learned over time that one of two things could usually calm me enough to get me to sleep after reciting my insanely scary prayer:
1. Playing Disney movies in my head. I have a semi-photographic/auditory memory, so this wasn’t hard. I can still recite every single word to Cinderella and several other Disney classics without missing a beat.
2. Listing everything I was grateful for. This practice started out as me trying to remember everything good about life so that I could possibly die (should the Lord take my soul before I woke) happy.
The first trick has helped me become a master at reciting movies, song lyrics and poetry from memory. The second trick has evolved somewhat since I was too little to understand death very well.
The concept of “practicing gratitude” has become very hip in recent years. When I was young, I mainly heard this concept spoken about in church and around the Thanksgiving holiday. Now, I read about the importance of practicing gratitude in books and magazines, I hear about it on television and on podcasts and I hear about other people’s struggles to create and maintain such practices with startling frequency.
This concept is both strangely familiar and simultaneously foreign to me, because I have been “practicing gratitude” as both a coping mechanism and a force of habit since I began having memories. I didn’t have to force a practice to evolve, it simply continued forward from my nightly attempts at calming my mortality-related terror.
For the past 25 years or so (around the age of seven I started to understand that I would not likely die in my sleep) I have said the words “thank you” mentally or verbally dozens of times each and every day. When I see something beautiful, encounter something humorous or engage in some activity that makes me smile broadly, I almost always hear a faint whisper of the words “thank you” flit across my mind. Sometimes, these words grow so powerfully that they feel deafening and sometimes they simply sound like me chatting away. And sometimes, when no one is around, I say them out loud, just in case the great and wonderful forces that inspire my gratitude in the first place cannot read my thoughts.
It has been said before that death is the greatest gift we are given, because it inspires us to live life with meaning. Ever since I was tiny enough to have a Pound Puppy tent on my bed and to think that my blue tutu was the most prized possession anyone could ever hope to own, I have been both blessed and plagued with the idea that I might not live to see the morrow. This awareness has made sleep difficult and the idea that there is never, ever enough time for ANYTHING my constant companion. However, it has also ensured that I do not need to learn to practice gratitude, as so many of my peers do. Being aware of my own mortality at all times makes me very, very grateful for the little things. And in the end, that is not such a bad way to be.
She was telling me about how her preparations are coming along for the birth of her first child… whom I love already and am anxious to meet. Thinking about how few weeks are left until her little girl’s arrival, I asked if she was anxious about whether certain things had yet to get done. “No,” she said. “I have time.” I NEVER, EVER feel like I have time. I can recall exactly one minute in my entire life when I felt that way and it was within the first few hours after Samantha was born. Even when I was tiny, I never felt like there was enough time. Reflecting upon this fact (and trying to figure out how I can be more like my wise Sarah-girl), I stumbled upon what I believe to be the root of this issue.
When I was a very little girl, my nighttime prayers scared the crap out of me. You may be familiar with the particular prayer I was taught: “Now I lay me down to sleep, I pray the Lord my soul to keep. If I should die before I wake, I pray the Lord my soul to take.” I didn’t understand at that time that perfectly healthy little girls (whose greatest physical afflictions are frequent nose bleeds and cases of pneumonia) do not tend to die unexpectedly in their sleep. I went to bed every night thinking that I might not wake up the next morning.
Sleep therefore, did not come easy. I learned over time that one of two things could usually calm me enough to get me to sleep after reciting my insanely scary prayer:
1. Playing Disney movies in my head. I have a semi-photographic/auditory memory, so this wasn’t hard. I can still recite every single word to Cinderella and several other Disney classics without missing a beat.
2. Listing everything I was grateful for. This practice started out as me trying to remember everything good about life so that I could possibly die (should the Lord take my soul before I woke) happy.
The first trick has helped me become a master at reciting movies, song lyrics and poetry from memory. The second trick has evolved somewhat since I was too little to understand death very well.
The concept of “practicing gratitude” has become very hip in recent years. When I was young, I mainly heard this concept spoken about in church and around the Thanksgiving holiday. Now, I read about the importance of practicing gratitude in books and magazines, I hear about it on television and on podcasts and I hear about other people’s struggles to create and maintain such practices with startling frequency.
This concept is both strangely familiar and simultaneously foreign to me, because I have been “practicing gratitude” as both a coping mechanism and a force of habit since I began having memories. I didn’t have to force a practice to evolve, it simply continued forward from my nightly attempts at calming my mortality-related terror.
For the past 25 years or so (around the age of seven I started to understand that I would not likely die in my sleep) I have said the words “thank you” mentally or verbally dozens of times each and every day. When I see something beautiful, encounter something humorous or engage in some activity that makes me smile broadly, I almost always hear a faint whisper of the words “thank you” flit across my mind. Sometimes, these words grow so powerfully that they feel deafening and sometimes they simply sound like me chatting away. And sometimes, when no one is around, I say them out loud, just in case the great and wonderful forces that inspire my gratitude in the first place cannot read my thoughts.
It has been said before that death is the greatest gift we are given, because it inspires us to live life with meaning. Ever since I was tiny enough to have a Pound Puppy tent on my bed and to think that my blue tutu was the most prized possession anyone could ever hope to own, I have been both blessed and plagued with the idea that I might not live to see the morrow. This awareness has made sleep difficult and the idea that there is never, ever enough time for ANYTHING my constant companion. However, it has also ensured that I do not need to learn to practice gratitude, as so many of my peers do. Being aware of my own mortality at all times makes me very, very grateful for the little things. And in the end, that is not such a bad way to be.
Wednesday, November 12, 2014
Dinosaur versus My To-Do List
Mark, Samantha and I have our own shorthand. I suppose most families do. Years of fun, silly nonsense will do that to people. We refer to everything under the sun as “Chompanos” (which was three-year-old Samantha’s way of pronouncing the French word for “mushrooms”) as long as that reference is done with gusto. When we are frustrated with life, we cry out, “Why, WHY Mr. VanMoosicorn?!?” because Samantha’s seventh grade history teacher had a funny name and Samantha once yelled this instant classic.
And, we refer to anything that is young, cute and full of life as “puppy.” There are puppy kitties, puppy bunnies, puppy Samantha and (human) baby puppies. In one of my favorite picture books, a dinosaur puppy (as we refer to him) turns everything into a raucous contest. When he eats, he yells, “Dinosaur versus…. A Bowl of Spaghetti!” and attacks the spaghetti happily. The dinosaur puppy wins every contest in his day, except when it is “Dinosaur versus bedtime.” The dinosaur puppy happily falls asleep and bedtime “wins.”
In my life, I like “attacking” tasks wish relish. I love timing myself to do things faster, tracking myself to learn new insights linked to any given task and generally challenging myself in the process. My lupus does NOT like to attack things with relish. My lupus prefers fitful naps and numerous hot water baths for my feet and being grumpy. In my pre-lupus life, my to-do list never got too overwhelming. In my lupus-life, when it is time to engage “Dinosaur versus My To-Do List” the to-do list wins.
I am reading an incredible book. An INCREDIBLE book… which I will share with you all in another post. This book is reminding me of what I already know… that life is short and you must therefore prioritize in order to live it as fully as you are able to. I am all about that. I would love to prioritize my loved ones, my passions and all the other things that TRULY matter to me. But my work now takes me twice as long as it used to. And because each item on my to-do list feels like it is asking me to climb a small mountain slick with ice and infested with rabid bears, not many items get crossed off on a daily basis.
I feel like my day job and my to-do list are “winning.” And the dinosaur puppy within me is annoyed as hell at that. And oddly, that is a comfort. Because as long as I have the desire to embrace the dinosaur puppy within, there is hope that things will get better. I continue to work towards an asymptomatic state. And perhaps when I achieve it, my inner dinosaur puppy will eat my to-do list for breakfast and then go on a run…
And, we refer to anything that is young, cute and full of life as “puppy.” There are puppy kitties, puppy bunnies, puppy Samantha and (human) baby puppies. In one of my favorite picture books, a dinosaur puppy (as we refer to him) turns everything into a raucous contest. When he eats, he yells, “Dinosaur versus…. A Bowl of Spaghetti!” and attacks the spaghetti happily. The dinosaur puppy wins every contest in his day, except when it is “Dinosaur versus bedtime.” The dinosaur puppy happily falls asleep and bedtime “wins.”
In my life, I like “attacking” tasks wish relish. I love timing myself to do things faster, tracking myself to learn new insights linked to any given task and generally challenging myself in the process. My lupus does NOT like to attack things with relish. My lupus prefers fitful naps and numerous hot water baths for my feet and being grumpy. In my pre-lupus life, my to-do list never got too overwhelming. In my lupus-life, when it is time to engage “Dinosaur versus My To-Do List” the to-do list wins.
I am reading an incredible book. An INCREDIBLE book… which I will share with you all in another post. This book is reminding me of what I already know… that life is short and you must therefore prioritize in order to live it as fully as you are able to. I am all about that. I would love to prioritize my loved ones, my passions and all the other things that TRULY matter to me. But my work now takes me twice as long as it used to. And because each item on my to-do list feels like it is asking me to climb a small mountain slick with ice and infested with rabid bears, not many items get crossed off on a daily basis.
I feel like my day job and my to-do list are “winning.” And the dinosaur puppy within me is annoyed as hell at that. And oddly, that is a comfort. Because as long as I have the desire to embrace the dinosaur puppy within, there is hope that things will get better. I continue to work towards an asymptomatic state. And perhaps when I achieve it, my inner dinosaur puppy will eat my to-do list for breakfast and then go on a run…
Sunday, November 2, 2014
A Lupus Patient’s Thoughts on Medical Marijuana
Yesterday, I lost 18 hours of my life. I had had a uniquely difficult week at work, so I was not terribly surprised when I woke up with a headache. My hip joints, long bones and skin had been very painful the day before, but I resisted taking any medication for this pain because I needed to keep my head clear in order to finish my workweek in a strong way. However, the headache, deep pain in my face bones and inability to chew due to jaw pain which occurred Saturday morning required me to take pain pills.
It takes between 30 minutes and a few hours for my pain medication to kick in, depending on whether or not the first dose works. And unfortunately, the point at which I make myself take pain medication is the point in time where I am either vomiting from pain or close to vomiting anyway. If I haven’t begun throwing up before I take my pain meds, waiting the amount of time it takes for them to kick in generally sets me over the edge. This generally occurs even if I double-dose nausea medication before and during the entire process.
I needed my Saturday to recover from my workweek. Instead, I spent it in bed, vomiting so much that I couldn’t even hold water. My fibromyalgia makes it painful to lie down, but my lupus makes it painful to sit up, even with pain meds. These are the moments when I wish that medical marijuana was available to me and available to all patients like me.
I have never done recreational drugs. I have not so much as smoked a cigarette over the course of my 32 years. However, the idea that I could take a pill or suck on a lollypop and not only aid my pain but also aid my nausea in a way that doesn’t pump all kinds of prescription drugs into my system sounds incredibly appealing.
I lose between 18 hours and three days roughly every two weeks to this kind of pain-vomiting cocktail. I am young, ambitious and miss having a social life. I miss being able to complete my work without needing to stop to vomit, soak in hot water several times and nap my hours away. One look at the bone scans that were taken when my doctors thought I had bone cancer allows me to understand that things could be much, much worse. But they could also be much better. And for patients like me, obtaining access to medical marijuana as needed may indeed truly allow us to live our lives more fully, more peacefully and with less pain and vomit to boot.
It takes between 30 minutes and a few hours for my pain medication to kick in, depending on whether or not the first dose works. And unfortunately, the point at which I make myself take pain medication is the point in time where I am either vomiting from pain or close to vomiting anyway. If I haven’t begun throwing up before I take my pain meds, waiting the amount of time it takes for them to kick in generally sets me over the edge. This generally occurs even if I double-dose nausea medication before and during the entire process.
I needed my Saturday to recover from my workweek. Instead, I spent it in bed, vomiting so much that I couldn’t even hold water. My fibromyalgia makes it painful to lie down, but my lupus makes it painful to sit up, even with pain meds. These are the moments when I wish that medical marijuana was available to me and available to all patients like me.
I have never done recreational drugs. I have not so much as smoked a cigarette over the course of my 32 years. However, the idea that I could take a pill or suck on a lollypop and not only aid my pain but also aid my nausea in a way that doesn’t pump all kinds of prescription drugs into my system sounds incredibly appealing.
I lose between 18 hours and three days roughly every two weeks to this kind of pain-vomiting cocktail. I am young, ambitious and miss having a social life. I miss being able to complete my work without needing to stop to vomit, soak in hot water several times and nap my hours away. One look at the bone scans that were taken when my doctors thought I had bone cancer allows me to understand that things could be much, much worse. But they could also be much better. And for patients like me, obtaining access to medical marijuana as needed may indeed truly allow us to live our lives more fully, more peacefully and with less pain and vomit to boot.
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