Christmas Spirit with a Side of Lupus

Over the past ten days, I watched my beloved grandmother’s casket get lowered into the ground and I was put on a medication that I almost certainly cannot come off of and absolutely cannot get pregnant while taking. This medication is for my heart… it is not an inflammation or pain medication that I could potentially “muscle through” without. There is no getting out of this one and there will be no new tiny people while I am on this drug. And this horrible, potentially life-saving drug (I know, right? How annoying that it is both…) may be forever.

The universe knows me SO DAMN WELL. If there is a time of year to throw this kind of devastating loss and potential loss at me, it is Christmastime. I love Christmas. LOVE it. I am practically an elf. Even when there is no money and when there has been no loved ones to share it with, I drink Christmas up with a straw.

Mark and I have put up an absolutely gorgeous tree, which I decorated in cheap, sparkly red Christmas balls and white lights. It is the first tree I’ve had since 2009, because I haven’t been able to justify the expense. But it is finally time to say “hang the expense” and put up a tree. Why? Because I need joy right now. It is really that simple. And Christmas brings me joy.

Since my grandmother died, I have been breaking out in hives. Itchy, burning, red, angry hives. All over my back and all over my chest. I now pop Benadryl like candy. I just cannot seem to get my body to stop manifesting stress and grief. My inflammation has also gotten so bad that I can’t take the stairs standing upright. This morning, I had to crawl down the flight of stairs to the garage and crawl back up because my hips just won’t cooperate. My whole body is crabby. And when your body starts to break down like that, you do what you can to care for yourself, even if it means stretching your budget to bursting.

So, we have a tree and we bought some wall decals that look like snowflakes. My house looks like it is snowing and it is absolutely gorgeous. I am watching anything Christmas-related that Netflix is streaming and I listen to Christmas music while I do my physical therapy exercises. I am very, very tempted to get waterproof earbuds and a waterproof ipod thing so I can listen to Christmas music while I’m doing physical therapy in the pool, but I don’t think that even I can get my budget to stretch that far. ;)

Sometimes, even in the face of challenges that make your hair fall out (and you all know that mine loves to do that!) you need to soak up as much joy as is possible. The year has been a rough one and my body is certainly acting out as a result. But, it is also the most wonderful time of the year and I plan to take full advantage of that.

Shopping for a Funeral Dress

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.

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.

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…

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.

Evenings with Tim Russert and Doris Kearns Goodwin

Last week, one of my two best friends treated me to a “Pen Pals” lecture sponsored by Friends of the Hennepin County Library. One of the reasons why I love Amanda is that when she found out that Doris Kearns Goodwin was speaking this month, she emailed me with a headline that contained excited expletives… she is the only other person I know (other than myself) who would react to news of a presidential historian’s lecture with elated swearing.

Goodwin was absolutely charming. Her appearances on “Meet the Press” do not allow her to showcase how truly, truly funny and engaging she is. As we neared the “question and answer” portion of the lecture, I was itching to be chosen to ask Goodwin a question. We were sitting too far back in the auditorium to have a chance of being noticed, but I desperately wanted to ask her how she protects her writing process. She is an in-demand lecturer, political commentator and historical consultant. Yet, she consistently produces fabulous (and LENGTHY) political biographies. How, with so many opportunities available to her beyond writing, does she protect and prioritize her process?

Just before the last question was asked, I began to think about the last time I asked a question in this particular kind of public lecture. It was early November of 2004 and I was seated next to my dear friend Andy York at the PAC in Appleton. Earlier that week, we had spent 21 hours straight attending to the Election Day festivities at Lawrence University. As the president and vice-president of the LU chapter of the College Democrats, we had organized a massive phone bank, organized shuttle service for students and staff and planned a huge Election Night party. I had arrived on campus to begin setting everything up at 5 a.m. and did not leave the Union until 2 a.m. the following morning.

The day had been exhausting, but inspiring and exciting. I was eager to watch Senator Feingold win his race, to hear buzz about the write-in campaign for Andy York we had started in an effort to unseat an unqualified local politician and to hopefully watch as George W. Bush was denied a second term. The Election Night party was a huge success and began with fabulous energy as Feingold won his race. However, as the night wore on, it became increasingly apparent that the democrats would not be able to regain control of the White House.

There is a gorgeous and heartbreaking picture of me that was taken that night. I am unaware of the camera and am looking towards the televisions we had set up. I have red white and blue ribbons in my high pigtails and the word “vote” written on my cheeks in blue. I am wearing a white t-shirt that reads “Kerry, Feingold, York” on it. And my face is open, vulnerable and devastated.

I don’t think I’ll ever forget how it felt to sit next to York at that lecture just a few days after Election Night. I had suffered a significant personal loss about six weeks earlier and was still reeling when the election results came in and struck me another blow. When the “question and answer” portion of the night began and individuals began to line up at the microphones provided for the occasion, I rose initially because every single person in line was over 50 years of age and was male. But when I was selected to ask the last question, it wasn’t difficult to articulate the concern that was pressing on my heart both personally and politically.

“How do we move forward?” I asked. “Many of us young democrats have worked tirelessly to achieve a different outcome in this uniquely important election. How, when our faith has been tested so completely do we move forward without bitterness?” Although no other questions before had been met with such a response, the auditorium broke out into applause.

Tim Russert surveyed the short, waif-thin person I had become at that point for a moment before he answered. “This feels like the worst possible thing has happened,” he confirmed. And for a split second I didn’t know if he was talking about my personal life or politics. “But it will get better. Older members of the audience remember other elections that have felt like this. And there is no denying that a great loss has been suffered. But if you are determined to move forward without bitterness, to regain your faith and trust in the process while continuing to question and reform it, things will get better. It may not feel that way, but they will.” More applause… and a humble me walked back to my seat.

Ultimately, although I did want Goodwin to answer my question, I did not need her to in the same way that I needed Russert to answer my question then. Trusting the process, having faith in yourself and making your values and goals a sincere priority is a formula I suspect that Goodwin subscribes to, just as Russert did. (The fact that these two were friends seems to cement this idea.) And although I did not speak directly with her that night, I walked away from Goodwin’s presence humbled by the reminder of her friend’s advice, the reality of her process and the memory of who I was one decade ago.

A Room of My Own

In “A Room of One’s Own,” Virginia Woolf observes that, “A woman must have money and a room of her own if she is to write fiction.” Of course, notable exceptions to this smart observation certainly exist. After all, J.K. Rowling dreamed up Harry Potter on a train and wrote her first book while she was on welfare. However, Woolf’s assertion generally proves true. Over the past two weeks, I have been blessed with a room of my own at “The Loft.” But there is no money. There is, however, lupus and self doubt. And so, my writing process has largely gone like this:

Sit down.
Open notebook.
Start obsessing about money, health.
Repeat obsessing.
Question whether I have any talent.
Get pissed at myself for being so ridiculous.
Question whether I have anything worthwhile to say.
Become aware of how much pain I’m in and lay down on the floor.
Obsess about money, health and writing ability on the floor.
After time has passed, get hungry and go in search of something warm to drink.

I have been waiting years to have a room of my own and time to write. YEARS. Years, people. And now that I have both, I spend all my time in my head worrying.

I got to the point today where I asked myself a question I have literally never had occasion to ask before. “What if I give up writing?” As I asked myself this question, it physically felt like I had walked into a glass door. I was driving at the time, and I was so struck at the physicality of my reaction to this question that I almost had to pull over. What if I gave up writing and my dream of being successful at it?

Giving up both writing and my dream of it would result in:
More money
More sleep
Less stress
More time to attend to my health
A diminished (near-constant) feeling of failure because I have yet to achieve certain writing-related goals

And yet, there is a reason why even asking the question made me feel like I had walked into a large, solid pane of glass. Yes, I would gain time, money and a certain peace of mind if I set this demanding, deafening (and lately debilitating) dream of mine down for good. However, I feel in my core that if I let this opportunity to pursue writing as a career pass me by that it would become my greatest regret in life. Being present for my loved ones and engaged in those relationships are reasons enough to exist and to truly live. But I truly feel that denying the process that is my calling is the equivalent of denying my very self.

I am really, REALLY annoyed. But it seems that putting down my dream is just simply not an option. Rather than let go of writing, I have to find a way to let go of my mental baggage and the emotional crap that is standing in my way. I have to somehow be okay with being broke and sick and (maybe?) talentless and an active writer all at the same time.

It is funny how knowing that pursuing my passion is the right thing to do is both freeing and annoying as hell at the same time. But I do know it for sure now. So, it is ultimately a good thing that I have two more days of “vacation” left and a room of my own just across town…

Aerie’s No Retouching’ Policy

*Author’s note: This is an especially relevant post for me to be writing today as the scale at the doctor’s office revealed this morning that despite my best efforts, I have actually gained a whopping six pounds in the past 28 days. (Insert deep sigh here…)

Due to student loans and medical bills, I do not have money to spend. As a result, shopping is generally a rare activity for me. When I do shop, I tend to buy on the cheap and only when coupons are available or something is on sale. “Oh,” you may be musing. “THAT is why every single item of clothing she owns is from Old Navy!”

However, there are three things that I do not purchase at a discount. When I need these items, I purchase good quality pieces, not pieces determined primarily by price. These three spendy items are: Good quality running shoes, good quality running socks and good quality bras. On anyone, cheap versions of these items can lead to discomfort at best and injury at worst. And because my ribs and my feet are two of my most sensitive body parts (due to my autoimmune conditions) I am especially concerned about keeping them happy.

It is for this reason that I found myself wandering into Aerie a few months ago. I was in search of a decent bra to accommodate the fact that gaining weight means a somewhat disturbing jump in bra size. I had first ventured into Aerie during this past Christmas season in search of gifts. Mark has four brothers and three sisters-in-law, so they have implemented the “grab bag” system in order to ensure that none of them go broke at the holidays. Each brother and significant other grabs one name of another brother or significant other and buys gifts only for that person and for Mark’s parents. It is a fun way to ensure that everyone gets gifts and that no one goes bankrupt. Mark and I had grabbed the names of two of his sisters-in-law, who both requested pajamas or loose running/yoga clothes. I thought that Aerie would be a good place to shop for both Rebecca and Jen at the same time.

I was charmed by the store, its products and its staff. So although I normally don’t sign up for “frequent visitor” cards from retailers, I signed up at Aerie, confident that I now had a place to shop for decent bras beyond Victoria’s Secret and other outlets that are just too expensive for me right now. When I returned to this store a few months ago in search of a new decent bra, I was feeling anxious about trying samples on. No matter how confident you are in your shape and size, it can be daunting to enter a dressing room when you know that you’re not the shape and size you feel best at. As I slipped a sample on and turned to the mirror, my eye was not drawn to my shape, but to a stick-on sign that read, “This reflection has not been retouched. The real you is sexy.” And because I am me, I cried.

It turns out that Aerie’s print ads, model shots in-store and other marketing is now completely un-retouched. The company has embraced the idea that retouching leads to unrealistic expectations about body image for both models and non-models alike. Even Joan Lunden’s recent People magazine cover detailing her battle with breast cancer is so airbrushed that the 64-year-old woman’s face looks as smooth as her bald head. Does the media really think that I need Joan’s face to be free of wrinkles in order to find her beautiful or her story inspiring?

The Aerie no retouching campaign is only a single and small effort to acknowledge that both models and non-models are “imperfect” beings that are also beautiful, interesting and inspiring. But it is the kind of effort that too few companies are willing to make. As a direct result of this campaign, I took Samantha straight to Aerie when she needed a new bra this summer. As I sat on a little puff chair outside her dressing room and waited for her to let me know whether or not a sample fit, I heard her say confidently, “Yeah I am!” and I knew in an instant that her eye had been drawn to the critically important message as well.

Ramping up to NaNoWriMo

I am excited about something. Actually, I am thrilled about something. For the past three years, I have intended to actually take vacation days (beyond one week at Christmastime when Samantha is home) on days that I am not sick. However, each year that has gone by, this intention has been smashed to pieces by the number of days I have been compelled to take off due to illness. But this year, I have hoarded my vacation days like a squirrel protectively gathering food for the winter. I have worked every single day (save for three when the constant vomiting and pain just wouldn’t give me a damn inch) no matter how crappy I have felt. And as a result…

I am taking two weeks of vacation in October in order to work on my novels! WOOOOOOO!

In downtown Minneapolis, there is a fabulous literary center referred to as “The Loft.” The Loft houses the Minnesota Center for Book Arts, Milkweed Editions, a café and the literary center itself. This center hosts numerous writing classes, readings, literary groups and other events. In addition, there are little writing studios tucked away on the second floor that can be rented on a per-month basis by Loft members like myself. And can you guess who is renting a studio for the month of October? This girl!

Books were my first true love. There is literally no time I can remember that I didn’t know how to read and write. And yet, it is my writing that is neglected first and most completely when I am sick, when I am overworked and when I am overwhelmed. In an effort to begin righting this wrong, (Ha! No pun intended…) I will be spending my incredibly precious days off in a little Loft studio, writing, writing and writing some more.

Several of you have heard me describe the inside of “Iris Fine Yarns” in Appleton as my version of what some corners of heaven must look like. I must say… the bare and yet inviting little Loft writing studios are currently rivaling my very favorite knitting store as a glimpse into pure joy.

This is not to say that I anticipate that my weeks at The Loft will be carefree. On the contrary, drafting creative work can be one of the most maddening voluntary pursuits one can choose to undertake. However, writing my own work (as opposed to the 35 pieces per week that I create on behalf of my employer) is the kind of activity that leaves me tired in the best ways. And instead of weathering insomnia inspired by unfinished to-do lists, lupus-related pain and stress, I tend to be gripped by character development and plot-related insomnia when I am writing regularly. I much, much prefer the latter.

November is National Novel Writing Month, also known as NaNoWriMo. During this month, aspiring novelists from all over the world commit to writing 50,000 word drafts. Those of us who choose to also support each other in NaNo’s forums and at community events. My past few Novembers have not been NaNo-focused because I have been as sick as a dog. However, this November looks promising. And I’ll be ramping up for its promises during October as I inhabit a tiny writing studio downtown and happily stay up far later than I should thinking about where my pen would like to take my pieces next.

My Current Running Playlist

When I was young, I was convinced that my life was a movie that the angels watched for entertainment. As a result, the idea that a soundtrack for my life existed came naturally to me. I don’t think I’ve ever fully let go of this soundtrack idea. Perhaps it is because music has a transformative, inspirational and memory-laden power that few other things possess. When certain songs or albums play, I can be instantly transported back to a certain moment, age or relationship in my life. In addition, I know without a doubt that the songs I play regularly now will be forever associated with this time, this age and my current relationships.

My running playlist is something that gives me strength, kicks my ass and inspires me to dig in. It moves me forward and helps to remind me why I’m doing what I’m doing. There will be other running playlists in the future… and I am sure that I will love and treasure them. But this is my “Gonna Conquer a Race Post-Diagnosis, Dammit!” playlist and it will likely always be uniquely special to me.

“What is on your playlist?” you ask. Well, I will tell you. And you can feel free to check some of these songs out if you’re looking to add some pieces to your own running playlist and please feel free to suggest additions for mine. The only criteria I have for this current playlist are that it does not contain any woman-hating songs (I will not listen to this crap… I just will not do it) and that it motivates me to get up and move. Inspirational lyrics are a plus. *Note that otherwise cheesy music does not bother me as such when I am running my booty off. If it makes me want to keep going, it is welcome on my playlist.

My current running playlist is…. (drumroll please…):
- Dog Days are Over – Florence + The Machine
- Control – Janet Jackson (although the Glee version is on my list right now)
- Something that I Want – Grace Potter (from Tangled)
- Some Nights – Fun
- Who Says – Selena Gomez (courtesy of Samantha)
- Stronger – Britney Spears (no judging!)
- It’s Time – Imagine Dragons
- The Fighter – Gym Class Heroes
- Titanium – David Guetta feat. Sia
- This is How We Do It – Montell Jordan (13-year-old me is very happy about this)
- Raise Your Glass – Pink
- Am I Wrong – Nico & Vinz
- Best Day of My Life – American Authors
- Can’t Hold Us – Macklemore & Lewis
- Happy – Pharrell Williams
- Lose Yourself – Eminem
- Pompeii – Bastille
- Jump – Madonna
- Wanna Be Starting Something – Michael Jackson
- Wake Me Up – Avicii
- Brave – Sara Bareilles
- Maps – Maroon 5
- Domino – Jesse J
- Comeback Kid – Brett Dennen
- Catch My Breath – Kelly Clarkson
- Freedom! ’90 – George Michael
- Hall of Fame – The Script
- Tonight Tonight – Hot Chelle Rae
- More (RedOne Remix) – Usher
- Land of Confusion – Genesis
- Burn – Ellie Goulding
- Alone – Armin van Buuren

Why You Gotta Be So Rude?

Woah.

This superficial word is the first semi-concrete thought I remember being able to piece together after I was struck by harsh words uttered by strangers. Even now, it is difficult to write about this experience if only because it was so stunning that my thoughts about it have yet to fully express themselves in a straightforward fashion.

I was shopping for a scarf for my daughter at a cute and hip shop at the Mall of America yesterday after hitting up the Minneapolis farmers market on Lyndale. I was in an excellent mood, having gotten to the market early enough that it wasn’t crowded and I could take my time conversing with the vendors. I then sat at a Starbucks in the MOA until the rest of the shops opened and enjoyed my tea and my book in this oddly quiet space that is usually so bustling with activity.

As I was envisioning my daughter in a number of different scarves and fingering their fabric, I overheard two young women discussing their recent decisions to diet differently and work out differently than they had before. These women were almost certainly in their early 20s. I remember thinking that they didn’t seem to realize how loudly they were conversing, as they were many feet away from me and yet I could hear every word they were saying. And then one of them noted, “I refuse to get fat. I refuse. I mean, look at that fat-ass woman over there holding the pink infinity scarf. She looks like she could be really pretty if she stopped being so god-damn lazy.”

There were no other women in the store holding scarves, let alone another holding a pink infinity scarf. This woman was unquestionably talking about me.

I don’t know exactly how long I stood there before I conjured up the profound thought of “Whoa.” But once I did, I knew that I wouldn’t be confronting these young women. Because if I could not piece together a response, how on earth would I express one? Instead, I put down the scarf and went to splash cold water on my face. Once I had, my mind flooded with dozens of thoughts that were both connected and seemingly divergent. Some examples:

- “I wear small tops and fit into size 10 jeans. Is that really that fat?”
- “How does a person become that callous and rude? Does that girl’s mother know that her daughter speaks like that?”
- “I’m not lazy. Lupus is not laziness. (Pauses) Am I lazy?”
- “It is a good thing that Sarah/Amanda/Samantha wasn’t here. (She) would have lost it on that girl.”
- “She’s wrong!”
- “Is she right?”
- “Are people really that mean?”
- “Have I ever made anyone else feel the way she is inspiring me to feel right now?”
- “I’m embarrassed.”
- “Being embarrassed about this is stupid.”
- “I am really, really embarrassed.”

The social, political, cultural and personal influences that both led this young woman to say what she said and me to respond the way I responded are so complex and layered that it almost seems futile to dissect them… at least for the purposes of a single blog post. What has struck me most about the situation beyond this complexity, however, is that it happened in the first place. A cruel thing was said and I was left reeling.

It was human of me to reel in the wake of this comment. Just as it was human of me to feel insecure in my own skin in the wake of the comment. And just as it was human of me to feel insecure in my own skin while dressing that morning because I don’t resemble my usual reflection now that medication and circumstance have helped me to put this weight on.

I don’t judge myself for reeling or for feeling insecure either before or after the comment was uttered. But my response to the comment helped to clarify for me that I am indeed feeling very uncomfortable in my skin and that this reality is not doing me any favors. When I am feeling comfortable in my skin, I tend to react purposefully to situations as they arise. I tend to know my own mind and I am not easily shaken. I also tend to bounce back very quickly when I am shaken.

I sincerely hope that the young woman who uttered that cruel and thoughtless comment yesterday learns to treat other people and herself with greater care and respect. But I also thank her (in a way) for her thoughtless comment, given that it clarified for me that I am not currently walking with my head held high. I am therefore not treating myself with the kind of care and self-respect that I deserve. Sometimes lessons are learned the hard way. And I have righted the height of my head upon my shoulders as a result of this rough yet ultimately helpful encounter.

Yes, I DO Need a Sixth Bookcase!

The other day, Mark and I were browsing the “back to school” section at Target and we stumbled upon a decent-sized bookcase for $17.00. The conversation then went a little something like this:

Me: (Literally jumping up and down) I need this!
Mark: Really?
Me: (Incredulous… given that there are books stacked on top of all five of my existing bookcases, books lined up on the shelves in two closets and inhabiting three giant rubbermade tubs in storage) YES!
Mark: This is a problem.
Me: (Tapping my head in mock “thinking” stance ala: Winnie-the-Pooh) Yes. It is. Someone keeps buying books.
Mark: I’m serious, Kassie. There is literally nowhere left in the house to put another bookcase.

He had me there. I currently have five large bookcases in the house. One holds kid lit, one holds YA lit, one has non-fiction, one has fiction and one is a fiction/non-fiction split. In addition, all books having to do with cooking, vegan lifestyle, food criticism and food industry criticism are housed in these cute cubby blocks we use as end tables in the living room. There are books everywhere in the house. But I really NEED another bookcase.

I understand that this is an absurd problem. But hear me out. I have been stupidly financially strapped since I was 15-years-old. And many of those years I am talking POOR. Samantha could always fit all of her toys in our house on either her converted changing table (in our college apartment) or in a large blue bucket (in our law school apartment). Until a few months ago, Samantha and I shared a bedroom for 8 years. We have never had space or money. But I made a rule early on that we would always have money for books. I buy 90 percent of those books used (which I hope to change for the authors’ sake once I have the means to do so) and roughly 75 percent of my books have been purchased at Half.com for less than $2. They do take up space, but they are necessary.

As Meg Ryan’s character notes in “You’ve Got Mail,” “When you read a book as a child, it becomes a part of your identity in a way that no other reading in your whole life does.” Books are literally one of the ways I parent my child when she is so far away from me. I empower her and transfer my values to her through stories of bold, brave, curious and loving girls. The books on Samantha’s shelves serve as both a bonding experience (because I read them too) and as a reminder of what I have taught her.

My book shelves serve as a reminder of who I want to be and what I want to write. Oftentimes, I read books from the library (free!!!) but purchase a copy when they become absurdly cheap. Not only are these copies great for lending and for re-reading, they serve as a reference of the kind of writer I want to become and the kind of woman I aspire to be. Every single copy that I have chosen to keep (because I do donate a lot of books to portable lending libraries, the hospital and Goodwill) has a purpose. Name any book on my shelves and I can tell you why I’ve kept it. Some examples:

- Fall on Your Knees by Ann-Marie MacDonald – How to write a book that is structured like a Paul Simon song… One or two lines change the entire scope of the piece
- Do They Hear You When You Cry by Fauziya Kassindja – The book that inspired me to go to law school and still reminds me that by advocating for a single person’s human rights, the entire legal system can be forever affected
- The Girls Who Went Away by Ann Fessler – There is not one day that goes by that I am not blessed to have had my daughter in the time and place that I did. Even 45 years earlier, my experience as a teenage mother could have led to having her taken from me as a matter of course

Books are ultimately possessions and therefore it is unwise to get too attached to them as physical objects. However, my books and Samantha’s books serve as star maps in the metaphorical universes of our personalities, our relationship, our values, our aspirations and our thoughts about life. I know that there is nowhere to put another bookcase in the house. And I know that it is a problem that I can’t stop buying books. But… I really need another bookcase.

Why this Lupus Girl Signed Up for Weight Watchers

I didn’t know that “thigh gap” was any sort of controversial thing until I lost mine. Several weeks into the first heavy-duty round of Prednisone, I had this conversation:

Me: Something is wrong.
Mark: What?
Me: My thighs are touching when I stand up and when I walk. It is really uncomfortable.
Mark: Oh God. Are you going to be one of those crazy women now?
Me: (Furrowed brow. I don’t like the word “crazy” as broadly applied to women.) What women?
Mark: Those women that think they aren’t thin enough if they don’t have a gap between their thighs.
Me: This is a thing?
Mark: Apparently you aren’t aware of this. Remain in the dark, Kassie. Remain in the dark.

I didn’t remain in the dark. I searched “thigh gap” and was appalled at what I discovered. I didn’t need to maintain a thigh gap for self-esteem reasons. I just simply had always had one and was confused when it went away. Even when I gained weight the first time I was studying for the bar (interrupted by a nasty case of the swine flu) and the second time I was studying for the bar (when I almost literally started living at Starbucks), I hadn’t gained enough weight that I had lost the natural gap between my thighs when I stood up. Post-Prednisone, that gap is a far-away memory.

When I went to the rheumatologist this week, she noted my weight. I said, “I’m heavier than I’ve ever been and can’t seem to lose any of this weight.” She said to me very, very sternly, “You gained all that weight due to your medications. You don’t even think about feeling badly about that.” I wondered if it was easy for her to say that, given that she could pass as an Iranian supermodel. I don’t feel badly about gaining the weight at this point, I just feel frustrated that I can’t seem to lose it.

When Portia de Rossi was promoting her memoir (love her… and as someone who battled eating disorders in my teens, I admire her efforts at overcoming her own eating disorder) she noted in more than one magazine that she loves being a whole-foods vegan partially because you just simply cannot get fat on that kind of diet. Oh, Portia… I beg to differ.

Since the medication fest that is Lupus began roughly 18 months ago now (Geez!), I have learned how to get fat on a whole-foods vegan diet. Even when I am sticking brilliantly to my autoimmune/anti-inflammatory diet, I either gain or keep on all the weight. Why? I think it is because the nausea/low blood pressure/headaches, etc. keep me eating not just fruits, veggies and grains, but nuts. I swear, I can eat almonds, pistachios and peanuts by the pound when trying to ward off my churning stomach and achy head. I have not developed a good strategy to deal with this issue until lately… simply because without filling snack nuts, I feel so much worse than I already do.

It is with a mind towards charting my intake and hopefully shedding some of these Lupus pounds that I’ve decided to join Weight Watchers. Are their serious problems with this organization’s point system? Sure! For example, a brilliant cereal I LOVE manufactured by Pure Elizabeth contains only quinoa, flax, chia, hemp, amaranth and gluten-free oats… 2/3 cup of this cereal is considered to be the same number of “points” as a decent serving of frozen pizza. Hmmmm. However, I know how to tell the difference between healthy whole foods and crap. So, I have a leg up on taking full advantage of this points system in ways that will hopefully help me keep my calories down while ensuring that I only eat healthy whole foods… including unlimited fruits and veggies, as these items as “free” on the points system (as they should be).

I am not sure that I am brave enough to post a “before” picture… but I’m hoping to be brave enough to post an “after” picture when I start shedding these bad boy Lupus pounds of mine. Until then, I will simply thank my stars that I want my thigh gap back not because it is some sort of arbitrary (and dangerous, for many people) standard of beauty but because every time my body has felt its best I have simply had one.

Glimpsing the Finish Line: Where I’ve Been and When is this Blog Going to End?

I was driving past Lake Calhoun this morning on my way to the gym when I thought, “Wow, it is finally starting to look like summer.” Starting to look like summer? It is the 20th of August! “Oh yeah,” I thought. “This must be what happens when you stop going outside.”

Over the past few months, my good old pal Lupus has inspired me to become an unlikeable human and a drowsy hermit. I haven’t been writing lately for a few reasons. (But before I get into them, I promise you that this entry and the blog moving forward – towards a hard end date, I might add – will not be a whine-fest. I just need to do a little explaining before I stop being one of the most obnoxious versions of myself I’ve ever had the displeasure of knowing).

First, I haven’t been writing because I have become utterly obnoxious. I don’t even like this version of me, so why would I project that version past the confines of this inflamed, pain-ridden and crabby body?

Second, my Samantha has been home. She calls dibs on my energy and any goodness within me when she is home, at any time that said goodness seems to be in short supply.

Third, I have been embarrassed and ashamed by my limitations. “Who wants to read another blog about me stumbling and failing to reach another goal?” I asked my best friends Sarah and Amanda earlier this summer. (While internally wanting to ask, “And why on Earth do you even want to be around me when all I do is whine and crab?”) “We do,” they insisted. “And individuals who have gone through anything like this will read your truth and realize that they aren’t alone.” I remained dubious.

And then Robin Williams died. Died of his demons. Died of depression and addiction (which are often conjoined twins) and perhaps because he was struggling mightily with his Parkinson’s diagnosis. I wept. Openly. Repeatedly. I am not depressed or an addict. But I have gotten to the end of my rope with my Lupus. And just as Heath Ledger’s death put into perspective everything about my custody battle for my daughter, the death of Robin Williams has snapped me back into life in the wake of what I will now refer to as my “Lupus tailspin.”

Since Robin’s death, I have spent a great deal of time meditating, moving my aching body and getting up the courage to begin writing again. Even as I have been avoiding my pen and my typewriter in favor of vomit buckets and bad moods, I have been compiling ideas for this blog. I have been dreaming about what I would say, if only I felt that I was worth listening to. I’m back, and I hope you’ll rejoin my journey as I embrace running and recovery (if that is the right term for “battling” and simultaneously “making peace” with Lupus) again with a joyful heart and determined mind.

As you may have guessed, I will not be running the marathon in October. But I am announcing right now that I will be running a race in the spring (marathon is still the goal, but even if it needs to be a 5K, I’m going to make it to a finish line) and at the end of that race is when I’ll be retiring this particular blog. I suspect that I’ll always write about running and about my medical conditions. But I am going to now write with a hard end-date in mind in order to allow me to write something new and different within the foreseeable future. I never again want to feel like this blog is a burden or a disappointment. So, I’ll be writing joyfully until I finish a spring race and then I’ll move on to the next exciting project I have in sight.

Thank you for reading. I truly appreciate it.

Keeping the Streak Alive and 'The Bestie Test'

Hello, dear readers. I’ve missed you! I have been MIA for several weeks because I’ve been adjusting to new heavy-duty meds, moving out of an apartment I have lived in for five years (my new place is sweet and Samantha FINALLY has her own room, so it is not a sad move) and just generally being sick. (Thank you to everyone who provided me with advice during my last flare-fest… there is nothing like being completely laid out by pain so bad you can’t hold anything down for days to make you appreciate the little things. Like baby ducks. I am a big fan of baby ducks).

However, I am back in the blogging spirit and I even have a little wisdom to share in my “comeback” post. But first… time to brag. I have a streak going. For all the charts and graphs and every other micromanagement I use to stay as healthy as possible, I’ve never been focused on the idea of fixating on a streak. However, I have put in one hour of yoga and a minimum of one half hour of running and/or strength training on every single day that I have not been completely laid out in pain (or on our major moving day) for quite a while now.

It turns out that generating a streak is highly, highly motivating. My body is now generally excited to get in the yoga studio/pool/gym… even though I feel like a dork having to wear a mask due to my immuno suppressants. And on days that my body is not excited to move (thank you, Lupus) I employ “The Bestie Test.” The bestie test is something I devised in order to regulate my perfectionist demons when it comes to training. Without the bestie test, I tend to push too hard and land right back where I started from.

My two best girlfriends, Sarah and Amanda, are smart and grounded sweethearts who love me even when I’m being a neurotic mess. They tend to push me when I need pushing and tend to say things like, “You’re being ridiculous, get back in bed you weirdo” when I push too hard. And, they have come to understand that Lupus behaves differently than other conditions, so they don’t freak out when I have to carry around plastic bags to vomit in public places, fall dead asleep during “Divergent” in the theater because of fatigue and crawl around instead of walk when the nausea gets too bad.

In short, the bestie test holds that if both Amanda and Sarah (who know both me and my condition pretty darn well) would tell me that I can probably handle my workout or if they would both tell me to get my ass back in bed, I have a pretty clear idea of whether or not I should push on a given day.

I struggle with being proud of myself for a number of reasons. However, I am taking GREAT pride in keeping my streak alive every day that the bestie test or common sense don’t keep me in bed. And as a result of my streak, I can actually see the kind of results I’ve been wishing for… for quite some time. During my next post, I’ll update you all on my racing plans and how training has been going during my “amazeballs” (as my daughter would say) workout streak. Until then, have a brilliant weekend and thank you for your patience in my absence! (And, if you are struggling with achieving a certain goal, consider charting a modest streak on your calendar. You’ll be amazed at how motivating it can be…)

Small Ball Release

Athletes, individuals who struggle with chronic pain and you lucky birds without chronic pain can all benefit from both foam rolling and small ball release. You are likely familiar with foam rolling. Foam rollers can be large or small, relatively short or longer than the average torso. These dense rollers allow individuals to engage in self-directed myofascial release along longer planes and relatively broad and flat areas of the body.

Myofascial release stimulates the muscles as if they were being stretched through direct pressure. You have experienced myofascial release if you have ever gotten a massage. This pressure helps to relax muscles, improves circulation and breaks up fascia and other connective tissues. This is a critical process, given that if fascia becomes overused and tight, it can restrict movement, cause muscle pain and decrease circulation.

I have a love/hate relationship with my foam roller (I love rolling out my back but rolling out my calves tends to hurt so bad that I swear when I’m doing it if I’m alone) but I soon discovered after beginning to use it regularly that my foam roller just isn’t enough for me. I am a relatively petite woman and the long, flat, broad parts of my body that are easy to foam roll just are not very long, flat or broad. Plus, the foam roller isn’t great for directing pressure at sensitive areas like underneath my shoulder blades, right next to my spine and my hip flexors. In addition, I LOVE my masseuse, but massages are expensive and are therefore rare for me.

So, thank goodness I discovered small ball release. I took a complimentary class in this technique a few years back from Time Out Studio in Minneapolis. After class, I immediately went online and purchased a set of the small balls used in class (with the tote, as some exercises are done with the balls in the tote) from a site called Yoga Tune Up (https://www.yogatuneup.com/ytu-therapy-balls-wtote - If you are a bigger person, this site also sells slightly bigger balls in a tote as well).

You use these balls much like you would use a foam roller. However, because they are small (smaller and denser than tennis balls) they work great for spinal release, hip flexor release and should blade release. The more often you use them, the more it feels fantastic to roll out. If I miss a few days, the direct pressure becomes more difficult to breathe through, which lets me know that my fascia is too dang tight. I once read that foam rolling (and small ball release) is like flossing… you have to do it every day to see real benefits. And that observation rings very true.

If you have any questions about small ball release, just send them my way. I am a huge advocate and would be happy to provide you with any feedback that I can.

Tension and Release

I learned a valuable lesson recently at the pain clinic that can apply to anyone, even if you are not currently dealing with physical pain. The lesson has to do with how the body often copes with both psychological and physical pain through the process of tension and release.

As I have previously noted, I am currently able to get through most workdays without too much trouble. Some days are unquestionably harder than others, but I feel fairly okay about not taking medical leave at this exact point in time. However, it seems that as soon as my workday ends, my body falls apart. I struggle with fatigue and pain during the day, but at night I have fatigue, severe pain, vomiting, fever symptoms, etc. that tend to be far, far less present during the day.

My doctors recently explained to me that I seem to be extraordinarily tense throughout the day. Although this tension is complicating issues I’m having with my neck, shoulders and jaw, the doctors explained that my body has fooled me into thinking that this tension is ultimately beneficial.

Essentially, this tension builds against the sensation of pain that is present during the day. Overall, significant tension is how my body is allowing itself to push through the tasks I absolutely must get through to pay the bills. When I finally allow my body to relax, the pain that has been there all along floods my system.

Apparently this is a very human and very common response to both physical and psychological pain, especially among those of us who struggle with rest, relaxation and achieving peace (cough, cough… ahem. Excuse me…). The body naturally guards itself against feeling pain by tensing up and remaining on high alert. When the body relaxes, the already-present pain is felt far more fully.

“Ummm…” I stuttered, “Does this mean that I have to relax and feel severe pain all the time?” The answer to this question is complex. However, it seems that by gradually learning not to tense against feeling pain that I will better be able to deal with pain as it occurs throughout the day instead of pushing myself to breaking and then cracking in half after my work is through.

I realize that for a great deal of my life I responded to psychological pain in this way. Though I do far less so now, I surely do when it comes to physical pain. If you are struggling with tensing against physical or psychological pain, I encourage you to think about the phenomenon of tension and release. Even though you may not yet be ready to let down and allow yourself to feel your pain in order to better work through it, a little awareness of what may be happening inside your body may be beneficial whenever you are ready to exhale a bit.

Plan B

*Note: Thank you for your patience. I haven’t been writing lately because I have been spending most of my non-working hours sleeping, vomiting and laying on ice packs. Woo hoo!!!*

While I was sitting in my rheumatologist’s office very recently, my brilliant and absurdly lovely doctor asked me what has been bothering me about my condition the most lately. I know that she was expecting me to say pain or fatigue or some other physical symptom. “I’m boring,” I blurted out. “I’ve become so boring.”
“Boring?” she asked.
“I used to be this active, engaged, ambitious person. My life has become this condition. It is what I think about, talk about and write about. I am too sick to do anything interesting at all aside from reading. I don’t go out, I can’t make plans. I have become extraordinarily boring.”

By the end of the appointment, I had referrals for biopsies (annoying, because I oddly resent being cut into, even if it is for my own good) and even more blood work. My condition has gotten so nasty that I’m being prescribed drugs (to be started tomorrow) that promise to make me feel much worse before I can hope (fingers crossed) to eventually feel better. My quest to avoid these drugs has come to an end for now… because it turns out that they are now unavoidably necessary.

I am not cleared to train right now (although I am still signed up for a 10-K on August 30 and the Twin Cities Marathon in October) and I have turned into a boring sick person. It is now officially time to launch… (imagine a loud, imposing, echo-y voice) “PLAN B!”

“What is Plan B?” you ask? Plan B is a healing plan that does not involve marathon training (at the moment) but does involve learning how to be an engaged, ambitious and interesting person even while I am sick, sick, sick. Here are the beginning outlines of Plan B:

- Attend restorative yoga class (and hop in the pool) on each day that I am not flat on my back, throwing up uncontrollably or both
- Meditate daily… both guided meditations I own and love and the meditation work I am being prescribed as part of my treatment at the pain clinic
- Read loads of interesting books and periodicals
- Continue to outline my creative fiction work… I may be too sick to write on many days, but I’m not too sick to dream up work to write down later!!!
- Blog twice weekly as promised, refining and exploring Plan B as I go
- Become even more well-versed in a healthy, clean, anti-inflammatory and anti-cancer lifestyle than I am now and put these principles into use as much as I physically can on any given day
- Remember that I am not a boring person and that this condition does not have to turn me into one anymore

A little over two weeks ago, I told you that I would be introducing you to my new plan after receiving the news that I was no longer cleared to train, that my condition is progressing and that I’ve developed fibromyalgia to boot. Well, I’ve gotten much sicker since then so my new plan has evolved. It doesn’t seem particularly bold or shiny right now. But I have a hell of a lot of faith that it will give me a foundation upon which to reach for an increasingly bold, shiny and healthy life.

Thank you all for bearing with me as I’ve become increasingly boring. I promise that even if I (GOD FORBID) get even sicker that I will not remain this way. I’ve got one life and I have too much to say and learn and do to stay boring for long.

Learning (Again) to Kick My Own Ass

As most of my readers likely know by now, I became pregnant with my daughter Samantha when I was only 17-years-old. I took a pregnancy test on my lunch hour and then promptly reported to my fifth period class, during which I failed a test for the first and last time in my life.

It took me about a week to get past the shock of it all. And when the shock wore off, I did what I always do in times of uncertainty… I gathered every book I could carry on the subject of pregnancy and motherhood and I began making calls. I got a mentor (who would later become Samantha’s godmother) and I started taking classes through my school, the county and the hospital. When a challenging situation arises, I tend to lean heavily on all the resources I can possibly juggle and I set about educating and otherwise preparing myself to do the absolute best I can and to be the absolute best I can be.

Have you ever behaved so-unlike your usual self that you’d like to give yourself a good slap? Since the news that my disease is progressing, that I have to stop training for now and that I have fibromyalgia to boot, I’ve been quietly planning and resetting my goals. But I’ve also basically stopped sleeping because by the evening time my bones usually hurt so badly that it feels like they are throwing up… if that makes any sense. And with the sleep deprivation comes a lack of motivation to put my planning into place. Who is this woman, I ask you! All plan and no action… absurd.

At this point, I understand that planning means nothing if I don’t put it into place. But when I sit down to figure out how to kick myself in the ass, I’m inevitably distracted by the fact that it feels like all my fingers are badly sprained or that my ears hurt too badly to have both my glasses and my headphones on at the same time for more than an hour or so. I feel like my disease is getting the better of me… and that just will not do.

So… I am placing power in the art of accountability. I am vowing to you, my loyal readers, that I will write two blogs next week… one which details my plan of action and one which indicates how I am going to go about staying motivated (or something along these lines). I can’t seem to get my rear in gear… but I have a great deal of confidence that holding myself accountable to you all will help me re-learn to kick my own ass. And it turns out that this is a very valuable tune-up lesson indeed. Hugs and winks to you all until I write again this weekend. Feel free to wish me a silent good luck for this week’s rheumatology and pain clinic appointments! (And good luck for St. Patrick’s Day… Mark and I postponed Christmas until St. Patrick’s Day this year and that boy is notoriously difficult to create gifts for!!!)

The Way and the Art of Navigating Contradictions

Lkjaflkfjlklkdfskl;dslkd. No, this is not a typo. This lovely string of nonsense is evidence of what it has been like to write about being diagnosed with yet another autoimmune disorder while being told that the first one is rapidly progressing. I have tried to write my follow-up blog to “Oh, Bother” probably 120 times. But I have stopped myself words, sentences or paragraphs in, every single time.

When I started this blog, I had clear objectives and clear goals I was working towards. But it turns out that right now, all the goals and objectives I’ve been given by a number of wonderful doctors (whom I do sincerely trust) seem to be contradicting each other.

For example, I was recently told that physical movement is critical to remaining as healthy as possible in my current physical state. But I was told that my inflammation rates are so incredibly high that I should avoid yoga (I apparently have significant evidence of hypermobility related to the lupus and have been told that I could easily injure myself doing yoga), running/cardio (my heart is currently uncooperative) and strength exercises (muscle tissue in certain autoimmune patients can apparently reorganize incorrectly and inefficiently following exercise… I don’t fully understand this one and will be talking to the physical therapist about this soon). So… you want me to move, but I am supposed to avoid stretching, cardio and strength training. What am I missing here?

This is just one example of the kinds of contradictory medical advice I am currently weighing while determining my next moves. The problem is, all these contradictions are making it difficult for me to feel confident in making any actual decisions about my health. And even if the advice was more straightforward and consistent, should I follow it to the letter or rebel like so many people I admire who have taken their recovery routes into their own hands and charted their own courses with great success?

After days of indecision, I began to feel comfort and confidence in revisiting one of my favorite Eastern spiritual/philosophical approaches. It will stun none of you who know me well to learn that during this period of indecision I have been consulting every book I love dearly that could possibly lead me to some sort of peace and enlightenment. As a former religious studies major, I have been pouring over my texts on religion and philosophy in addition to my books on health and wellness. And I ultimately found a glimmer of the wisdom I am seeking in one of the most fundamental elements of Taoism.

Put simply, Wu Wei is the idea of non-action. However, the concept of non-action is not one that is necessarily passive. Rather than meaning that one in harmony with this concept should take no actions at all, the concept is rooted in the idea that one should behave in non-contrived, non-forced and wholly natural ways of being. For example, a flower does not analyze how to grow, it simply evolves, adapts and grows as a natural output of its being.

I am struggling. I am struggling and worrying and overanalyzing every aspect of my diagnosis. And because the medical community has provided me with so many contradictory answers on how to proceed with my care, I was initially left with temporary paralysis regarding how to move forward at all.

However, there is comfort to be had in the idea that if I allow myself to be quiet, to listen to my body’s signals and to derive my approach from what feels most naturally healthy to me that I can begin to move forward.

My body and I have some trust issues right now, but I believe that these issues were partially created simply because this journey of diagnosis and care has been fraught with chaos. In listening to all the advice my doctors have given me, I have only felt worse and required more medication and more treatment. I do not blame them for this one bit. Who knows if the outcome would have been even worse, had I not listened? However, it is important to me moving forward that I begin to trust myself again as well as trusting my doctors. Deriving my future care plan both from a place of expertise (my physicians, physical therapist, etc.) and a place of self-trust and actualization seems to be the best way to embrace the harmony derived from Wu Wei.

I doubt that I am through struggling mentally with this latest turn of events. However, I am approaching my next steps secure in the understanding that struggling itself is doing me very little good. I have already come to some conclusions about what physical, mental and emotional actions may best serve me in the immediate future as a result of the peace that revisiting the concept of Wu Wei has granted me. I hope you’ll check back in during the next few days as I begin to share what I have been thinking.

Oh, Bother

Currently, there is a grande Starbucks cup in my refrigerator that says in big block letters, “You are absolutely beautiful.” And I think that the lovely, blonde, 20-something, female barista chose these words for one specific reason. But perhaps I should back up…

Thinking about the four hours I spent in the doctor’s office and in the pain clinic on Friday now, I am still dazed. There have only been a few times in my life in which the person speaking to me delivered news that so rattled me that his or her words started to turn into the garbled nonsense noises of the teacher from “Peanuts.” But as the doctors told me,
“Your lupus is progressing rapidly,” and
“You have now developed fibromyalgia as a secondary diagnosis to the lupus,” and
“Marathon? You can’t do that. I need you to understand what you’re facing right now.”
Well… my brain started to dull the words and world around me.

Driving home in horrifically icy conditions, I unintentionally (but perhaps subconsciously) had somehow put David Crosby’s “What’s Broken” on repeat. After realizing that the song had been playing over and over, I concluded that I needed to pull over and pull myself together.

I ended up at a little Starbucks on Hennepin. When I got to the front of the line, I was focused enough to give the barista my order. I had been reciting it during my wait in line because I was so rattled, I didn’t trust myself to know what I wanted when asked if I didn’t concentrate on the inevitable question, “What can I get for you?” But it turned out that the follow-up question, “How are you today?” was the one that threw me for a loop.

In an uncharacteristic moment of having no filter, no defenses, no sense of decorum, I said simply, “I was diagnosed with another autoimmune disorder this morning and it turns out that I am much sicker than I thought. I can’t run the marathon. So… I need chai. I’m sorry.” Because of course, I tend to apologize when I’ve let just a little too much of myself show.

I became embarrassed, and went into the bathroom to put cold water on my face before the kind, lovely barista could respond to my disclosure. In the bathroom, I noticed that my braids were messy and coming undone. I looked as pale as I can possibly get and the area around my eyes had developed a purplish hue. I started feeling sorry for the barista because she was compelled to deal with the emotionally wrung-out and disheveled version of myself instead of the kind, perky one.

When I came out, my drink was behind the counter but another barista had replaced the one who took my order. On the chai cup, the barista who had helped me had written, “You are absolutely beautiful.” I think women often use the word beautiful as a reminder as much as an observation. And because I was looking physically wrecked, my guess is that this kind and lovely young woman saw something in me that I needed to be reminded of. I have not fully tapped into that reminder quite yet, but I have faith that I will in time.

Part of the reason why I am still so dazed is that my disease felt the need to put an exclamation point on what the doctors said, just in case I wasn’t listening. My pain level was so off the charts all day Saturday that I couldn’t even hold down water. I just lay on the floor in the quiet dark and repeatedly vomited stomach acid (I tend to vomit repeatedly from extreme pain, which is awesome) while Mark provided me with cold compresses, tissues and stuffed animals for comfort.

I found comfort in Mark’s presence (and in my beloved stuffed monkey that Mark named “Paul Simon” years ago), just as I have managed to begin to find comfort in the barista’s quiet reminder on the outside of my chai cup. I will find perspective soon, once my brain allows me to focus and I’ll write about what my next steps are (I don’t take words like “You can’t” very well… so, we’ll see). But in the meantime, I feel like I now have a real kinship with Winnie-the-Pooh, who found himself literally stuck in a doorway with no way of moving. And as such, I say to you all, “Oh, bother.”

***Note – The post I put up on Friday was written on Wednesday and scheduled to post on Friday. Just in case you are wondering how I managed to write a blog about “play” after the day I had…

Guidepost #7 – Cultivating Play and Rest

(Brown subtitles this Guidepost: “Letting Go of Exhaustion as a Status Symbol and Productivity as Self-Worth” – This subtitle alone is highlighted, underlined and starred in my copy of “The Gifts of Imperfection.”)

During her discussion of this particular Guidepost, Brown notes that “I now understand that play is as essential to our health and functioning as rest.” It took me years to understand that rest is critical to healthy functioning and even longer to understand the similar value of play. I believe that many of us struggle with this notion, especially because we live in a society that is truly driven to be productive as many hours of the day as possible.

When trying to cultivate play, the key for me has been to prioritize play in the same ways that I do every other health-related task on my daily to-do grid. Because my habits have been so shaped by the idea of listing priorities, I simply choose to list “play” as one of the things I must do each day for my health.

When my daughter is home, this to-do item is easy to engage in. We love board games in particular and a host of other playful activities as well. It gets a little more challenging to engage in “play” when I am by myself. However, this important practice does give me a fantastic excuse to buy coloring books and other fun activities at the age of 31.

Beyond making “play” a to-do in my every day, it helps me to be surrounded by fun and silly people. I am deeply grateful to have friends who aren’t afraid to be silly and truly enjoy having fun. As a serious person, I sometimes need a push in order to be a goof, to let my guard down and to allow myself to be light.

I can be a deeply serious and intense person. It did not strike me just how true this characterization is until my own sweet girl Samantha said last summer in passing, “Well Mama, I think you feel that way because you’re serious, intense and full of purpose. I’m just… well, I’m just lighter than you are.” There is nothing wrong with being serious, intense and full of purpose, but if that is one’s only mode of being, it can be an unhealthy way to approach life. I am therefore trying to cultivate the “lighter” side of myself in all kinds of playful and silly ways.

I am not far along in my journey of transitioning my self concept from “Productive” to “Passionate.” Because frankly, tying one’s self-worth to productivity is a difficult agreement to reform. However, I am reminded of how valuable my efforts to transition my self concept are most often in moments of peace, deep love, vibrant creativity and wholehearted play. In this sense, play is helping me reconceive what my life can be and who I truly am. If you are facing challenges in your own self-concept, I would encourage you to try and cultivate play more often. It just might help you move towards the person you most want to be.

Not an Ordinary Monday Post

Hello dear readers! “Where is the Monday “By the Numbers post?” you ask… I didn’t write one this past week because I wasn’t sure I was going to continue this particular blog.

As you may have heard, I was having some doubts about whether or not my blog was resonating with you all after noticing a fairly substantial drop in readership lately. I asked for feedback while I contemplated putting this blog down. I did not want to continue to make the effort to blog at this point in time if people are not choosing to read it, simply because one of this blog’s primary purposes is connection with you all. I started this blog in great part to connect with readers and to start working through my phobia of putting my written words out into the world in a capacity beyond ghostwriting. I write in other capacities for myself everyday… this blog is meant to be something more connection-based than my other work currently is.

I received some wonderful constructive feedback. I also received some sincerely appreciated encouragement and assurances that you all are enjoying whatever posts tend to pique your interest. I also received an incredibly kind note from a former classmate (thank you, Elissa!) that I will treasure for years to come, partially because it snapped me into some perspective that I had been lacking.

So… the blog is here to stay! I will continue to keep writing until I (knock on all wood surfaces around you) finish the marathon at the beginning of June and begin plotting my next big connection-based writing project. A special thanks to all of you who confirmed that this blog is serving purposes beyond my own self-focused ones.

Because I have no numbers to share with you this week, I thought I would give you a recommendation for something else to read that may get your wheels turning. Professional runner Lauren Fleshman recently had a baby and then strutted her bad-ass, in-shape bod on the runway at Fashion Week only a few months later. But upon reflecting about what it means to fully appreciate our bodies in our “best” and “worst” moments, she opted to blog about the experience, complete with her perceived “worst” photos of the days surrounding Fashion Week, including one with her “gut” sticking out and one of her so-called “thigh cheese.” I am not really doing this project justice, but it definitely inspired me and I hope you will dig both her post and a follow-up blog about the response the original post received. Have a brilliant week everyone… see you in a few days with another post of my own!

LF’s original blog: http://asklaurenfleshman.com/2013/11/keeping-it-real/
Follow-up piece: http://www.runnersworld.com/womens-running/lets-keep-it-real-about-our-bodies?cm_mmc=Facebook-_-RunnersWorld-_-Content-Blog-_-KeepingItReal

Guidepost #6 – Cultivating Creativity

When I was pregnant with Samantha more than 13-years ago (Good Lord…) my beloved parenting class teacher Marilyn Catlin taught me how to knit. Even since then, I have had skeins of brightly colored yarn nesting in various locations all over the house. For example, in addition to all the yarn currently residing in my big soft-sided yarn “tub” that I keep in my living room, I have four works in progress camping out on my bookshelves in various states of completion. Among them are pieces made of Kelly Green yarn, Deep Teal yarn, Black Sparkly Yarn, and this Gold-Pink hybrid yarn that defies description beyond those words because it seems to change before your eyes.

My yarn choices stand in stark contrast to the other fabrics in my house. When I put effort into my appearance (an effort which is only now being realized again after a long period of lupus-induced “I don’t have energy to put effort into my appearance, so please excuse the fact that I look like the bird lady from Mary Poppins”) I tend to favor fairly classical tastes. Great black pants or jeans, a simple but chic top in a classic color and minimal makeup suit me just fine. As a result of my approach, most of the basics in my wardrobe are black, blue, grey, brown and white. Scarves I’ve knitted in vibrant colors and interesting textures are what give my wardrobe a touch of my vivacious personality. They brighten, enliven and spice up my otherwise reserved approach to my appearance. And I adore my scarves, because I created each and every one of them.

Knitting is not the only way that I cultivate my creativity on a daily basis. I try to write creatively and to dance every single day that my eyes and the rest of my body care to cooperate. However, I don’t let others read my fiction terribly often (I’m working on the demons that keep me from putting that work out into the world) and the last time anyone saw me dance was in early 2009. However, my knitting provides a low-risk way for me to share my creativity with the world. I am confident in my knitting abilities and my yarn choices are so varied that my scarves tend to inspire conversation. I don’t doubt my knitting like I do my dance and my writing. I do all three daily, but my knitting is the only creative pursuit I have that doesn’t make me feel painfully vulnerable.

I think it is really important to cultivate creativity on a daily basis in ways that challenge you (like dance and writing do for me) and that make you simply happy (knitting). Creativity is not a luxury, so I hope you never fail to engage in your own creative work because it is somehow viewed as less important than other significant pursuits in your life. If you do question the value of your creative work, please pick up all three of Brene Brown’s books (or any author who intrigues you and writes on the need for regular creative work) and get reading. They will change your perspective. (Start with “I Thought it was Just Me, then Gifts of Imperfection, then Daring Greatly.)

Thankfully, I realized a few years back during a rough few months in my life that unless I practice creative work every day that my approach to life and sense of self almost instantly start to fall out of alignment with my values. Brown notes that part of the reason cultivating creativity as a daily practice is so critical is that creative work is among the only unique contributions we can make in this lifetime. It is an expression of our original being. As a result, failure to engage in active cultivation of creative pursuits can make us feel disconnected, resentful and marked by self-neglect.

If you suffer from any of these byproducts of suppressing your creativity (and regular cultivation of it) come hang out with me. We can chat about your creative aspirations while I knit up another scarf.

By the Numbers – February 3 – February 9

Books I Finished This Week:
- “Tales From the Crib” – by Risa Green – I’ve said it before and I’ll say it again… I am a sucker for decent chick lit. (This is the sequel to the book I finished last week, “Notes from the Underbelly.” The first one was much better, but it doesn’t take much to make me happy when it comes to decent chick lit)

- “The Untethered Soul” – by Michael A. Singer – As an individual with a degree in comparative religious studies (almost exclusively focused on near, middle and far eastern religions) I have a high tolerance and appreciation for eastern religious viewpoints and influences. However, themes of disconnection really rankle me for a myriad of reasons. As a result, I almost put this book down before I had really dug into it. But after pushing past the first few chapters and filtering through some of the questionably articulated westernized approaches to eastern ideas, I truly enjoyed the piece. I believe it has affected me enough that I will revisit sections of it regularly.

A Sample of What I Am Watching This Week:
- “Treehouse Masters” – A master treehouse builder and his motley crew travel around the U.S. constructing fabulous (and mega expensive) treehouses. Some of his projects include a treehouse spa, a treehouse brewery, a butterfly-themed structure to be used by grieving families and a Santa’s workshop. Good, family-friendly fun!

- “Meet the Press” – Once one of my top five favorite shows on television, I feel that this program has regressed into little more than a political gossip show. BUT, because I have faith that it will eventually turn around, I continue to DVR it and at least check if any legitimate discussions are occurring before I dismiss it during any given week.

Monday 2/3 – Rest day Monday… oh, I like you so much…

Tuesday 2/4
Step Count: 2,452 (aka: couch potato)
Training: I had to take a sick day today because of debilitating pain and some temporary paralysis in my legs. Ummm… no, thank you. I’d rather not do this anymore, lupus. I am learning to honor and accept you, but this is a bit much. (No training today. Will hopefully be able to make it up later in the week)
Something Interesting I Learned Today: I am truly grateful for the fact that I can take sick days from work when I need to (like today). Although I have to say… vacation days are way more fun.
Other News: Reason 4,523,961 why I love my daughter… She is an intelligent and thoughtful writer, but in her personal emails to me, she uses roughly uses one exclamation point for every 20 other characters typed.

Wednesday 2/5:
Step Count: Funny story… my FitBit had to be reset today by their tech people because about 1,500 steps into my day, my FitBit account went bananas and congratulated me on having climbed 10,000 flights of stairs in one day. 1,500 steps… 10,000 flights of stairs… it is really all the same, you know.
Training: “Only” one hour yin yoga… still having a rough time from yesterday and Monday… ahhhhhh, Lupus.
Something Interesting I Learned Today: I bought 10 yellow roses for myself for $6.99 today at Byerlys. It turns out that buying myself yellow flowers and making it a point to smell them every time I pass either vase they are in is a surefire cure for the blues. Try it!
Other News: Today I registered for the October Medtronic Twin Cities Marathon. Third time signing up is a charm!

Thursday 2/6:
Step Count: 8,723 plus pool work (getting back in the swing of things!)
Training: 30 minute pool run, 30 minutes of low-intensity yoga and 20 minute treadmill hill walking… Not what my training plan says I need to do today, but is a major improvement over the past few days. Excited to hopefully be feeling good enough to really dig in this weekend!
Something Interesting I Learned Today: My daughter created a website about child soldiers as a project on human rights for school. I am incredibly proud of what she has done. If you have any interest in checking it out, you can view it here: Http://samanthabevers.wix.com/childsoldiers
Other News: Despite the controversy surrounding the Olympics (And as an active human rights advocate I absolutely care about the controversy), I have Olympic fever. I have been an Olympics nut since I was a small child. I love when the world comes together to do anything peaceful and triumphant… and in my mind, the Olympics is one of the greatest demonstrations of such intention. Plus, because I speak/read/write basic Russian, love Russian literature, appreciate Russian culture (and went through a phase in my teens during which I was convinced I was a Romanov princess in another life) I am absolutely pumped to see the coverage of Sochi.

Friday 2/7:
Step Count: 11,482
Training: 4 miles on the treadmill planned but I punked out after 3 miles. My body is crabby.
Something Interesting I Learned Today: I really, really like Fridays. Not that I don’t enjoy my job, but I really need a break, kids.
Other News: I am bringing back the adjective, “Bully!” (ala: Teddy Roosevelt… an exclamation of commendation). Anyone who would like to join me is more than welcome to. (Wink)

Saturday 2/8:
Step Count/Training: I had a very, very bad lupus day. Let’s just leave it at that…
Something Interesting I Learned Today: Women aren’t allowed to compete in Nordic Combined in the Olympics. What????? We’re “allowed” to ski jump and to cross country ski but we aren’t permitted to do both. In the words of several female “How I Met Your Mother” characters this season, “What the damn hell?!?”
Other News: Best exchange of the day…
Mark: What is “smack” anyway?
Me: Heroin.
Mark: Are you sure?
Me: Yep. I looked it up when I was memorizing the soundtrack to “Rent.”
Mark: Of course you did.

Sunday 2/9:
Step Count: 8,721 (plus pool run)
Training: 50 minute pool run and 1 hour of low-intensity yoga. I feel like I’m starting to bounce back from bad lupus days a little better each time my body bottoms out. So, that is good!
Something Interesting I Learned Today: The show “Call the Midwife” is even better than I originally thought it was.
Other News: Samantha’s St. Patrick’s Day/Kelly Green scarf I knit her is finished in just enough time to put it in her Valentine’s Day care package. This is the kind of wonderful thing that can happen when I don’t put things off…

Guidepost #5 – Cultivating Intuition

Brene Brown subtitles this Guidepost “Letting Go of the Need for Certainty.” If you are anything like me, you probably made an “MmmmHmmm” sound when reading that subtitle.

Intellectually, I understand that nothing about the future is certain and most of the realities of the present that can be considered certain have to do with physics. And I am not going to lie to you, I never took physics. I struggled with math in high school and taking physics seemed like self-inflicted torture. Intellectually, I understand the boundaries of certainty. Emotionally, I weave in and out of healthy boundaries regarding certainty like a terrier navigating an agility course.

In fact, the nexus between my intellectual and emotional responses to the concept of certainty is so complex that I am hesitant to write about it at all. I am tempted to cut and paste some song lyrics in the body of this post and call it a day. Because deep down, I love that life is unpredictable in so many ways. But I also truly wish that some of my life was much more certain.

I want to know that if I take care of my body that I will get well to the point of being virtually asymptomatic.

I want to know that if I do my absolute best by my daughter that she will grow into a healthy, vibrantly happy, well-rounded and hopeful woman.

I want… I want… I want.

And yet, all we can do is trust in that if we do our best today with focused, purposeful, and value-based intentions we will live lives free of self-imposed regret. Because doing my best is the only thing that has ever produced that kind of result. Nothing else in the realm of intention-meets-action-meets-uncertainty is really certain.

The control freak in me hates that. But the dreamer in me is hopeful nonetheless.

Thinking about addictions and Philip Seymour Hoffman

The hardest day of my life was January 22, 2008. This was the day that it became unquestionably apparent that my daughter and I would end up spending a great deal of time apart so that she could spend time with her dad and his family. Have you ever read “The Golden Compass?” Well, that day makes me understand what it must be like to have the ties cut between yourself and your daemon. We have made the absolute best out of our situation and I am happy to say that we remain as tight as mothers and daughters can be. But on the day that it was decided that I would spend the majority of my time without her for at least a few years, everything just seemed to fade to black.

When that awful day was nearing its end, I learned that Health Ledger had died of an overdose. At the time, many people speculated that his acting journey for “The Dark Knight” had taken him to deeply dark places from which he could not emerge. It was later understood that it was more so his frequent separation from his own daughter Matilda that sped his decline. Because I had learned about his split from Michelle Williams and Matilda (from my family law class, of all places) I had a sense that he had been trying to nurse or dull a broken heart with those drugs.

I knew instinctively on that night that I could remain open, vulnerable, optimistic and I could face the pain of being without my daughter for too long head-on, or I could easily end up like Health Ledger and die essentially from a broken heart and an addiction to whatever would make the pain stop for a little while.

I am incredibly, incredibly fortunate to have never developed addictions to any destructive substances. Addictions tend to run in families and it certainly does in branches of mine. Because I understood from an early age what substances could do to a person, I have never even smoked a cigarette, let alone anything else and I can count on both hands the number of times I have ever been intoxicated by alcohol.

And yet, because I battled eating disorders as a teen and have witnessed addiction firsthand, I do comprehend how easy it is to become addicted. I understand that addiction is a terrible disease… one that the public needs far more education about. We learn at a young age to say no to drugs, but it seems that only after tragedy has struck do we begin to question why this is an imperative choice and what kinds of demons haunt the brains of addicts and alcoholics whose very biochemistry has changed as a result of their drugs of choice.

As I hope you already understand in your very core, addicts and alcoholics are not immoral, weak or stupid. On the contrary, some addicts and alcoholics are absolutely brilliant, loving, strong people whose brains have been changed as a result of substances. With help, they may enter recovery and continue a journey of recovery for a lifetime. But tragically, not all do.

Robin Williams, Matthew Perry, Aaron Sorkin and Philip Seymour Hoffman are excellent examples of brilliant creative professionals whose addictions deeply impacted their personal lives and careers. Robin Williams recently made a triumphant return to acting after falling off the wagon after 20 years of sobriety. His interview on “The Daily Show” underscores just how critical it is to remain in active recovery after succumbing to addiction. One slip can change a lifetime of effort. The interview can be viewed here: http://www.thedailyshow.com/watch/thu-september-26-2013/robin-williams

Matthew Perry and Aaron Sorkin struggled profoundly with their addictions but are now in active recovery and doing important work. For example, Perry has donated his own beautiful house to serve as a sober living facility for men in early recovery. Sorkin is creating groundbreaking television on “The Newsroom” and is working on a biographical film about Steve Jobs. Most recently, Sorkin took time to write a short, yet profound piece about Philip Seymour Hoffman’s untimely passing. It explores the bond that addicts share and their mutual awareness that even after entering active recovery (Hoffman was sober for more than 20 years before spiraling downward over the past few) that destruction is only a choice or two away. The Sorkin piece can be viewed here: http://entertainment.time.com/2014/02/05/aaron-sorkin-philip-seymour-hoffmans-death-saved-10-lives/

My generation loves the idea of celebrity doppelgangers. Mine (when I’m healthy) is a funky hybrid of Ellen Page, young Jennifer Garner and Emily Browning. Though most doppelgangers are chosen based on looks alone, many also mirror personality traits (mine certainly does...). Long before I met him, the man I love was branded by his friends with the celebrity doppelganger of Philip Seymour Hoffman. And every time I’ve seen Hoffman act or appear since learning of that tie, I see my boy in Hoffman’s appearance, thought-provoking approach and deeply admirable personality. Which is perhaps why Hoffman’s death is hitting me in the same ways that Ledger’s did. It is serving as a reminder that none of us, absolutely none of us, is that far from spiraling downward. We can only hope that in making healthy choices and seeking help when we need it that we can remain in the light and can do our best to face down the darkness when it creeps up upon us all.