Hairy Situations

There are myriad ways for people to deal with stress and/or anxiety. Some people go for a power run. Some people play the drums. Others might go to the driving range. But a small percentage of people turn those emotions inward and do harmful things to themselves. These actions are referred to as “deliberate self-harm” behaviors, and I am included in that group of people. I have trichotillomania.

Trichotillomania, a type of deliberate self-harm which affects a scant 2 – 4% of the population, is a rare disorder that causes its sufferers, like me, to compulsively pluck their hairs out in extreme excess. We pick at the hair on our heads, arms, and legs, as well as our eyelashes and eyebrows. We often find ourselves with bald spots after a plucking session, though we hardly knew what we were doing because we became so mesmerized and subdued by the plucking. (I have frequently stopped myself after plucking at my leg hair while in the bathtub, to realize that the water was cold and about 2½ hours had elapsed.)

If I recall correctly, I think this affliction began sometime between junior high and high school. However, I can’t pinpoint any one specific event, or even a series of events, that caused me to begin damaging my body in this way. Perhaps the normal grooming of my eyebrows led to my trichotillomania, as I always did find satisfaction in ridding my brow line of perfectly wrong hairs. I also recall removing black hairs from my blond mane since before I was 10 years old. To me, it was thrilling to hunt down and eradicate these black hairs, especially if they were slightly more coarse than my normal hair. I only wish I knew why. My problem didn’t grow too serious until high school when I literally pulled out EVERY SINGLE eyelash I had over the course of a couple stressful days. I had to line the rim of my eyes with black eyeliner in a feeble attempt to look as though there was at least some semblance of lashes. It was awful and ugly, and I’m not only referring to my appearance.

While in counseling, I learned that this problem was not just some quirk of mine, but an actual psychological ailment. It was very helpful to know that there were others like me. There seems to be no real consensus on the main cause, nor what class of disorder this should be considered, though. I desperately tried a variety of ways to cease this behavior. One suggestion for therapy was to buy a Barbie doll from a thrift store and pluck HER hair. I honestly gave this one my best shot, but it wasn’t the same. I think the uniformity of Barbie’s hair eliminated those “special” hairs; the ones that are much darker than the rest, the ones that are much lighter, the more coarse ones, etc. When I pluck my head hairs, there is usually something that draws me to each hair, as I mentioned earlier- I don’t just pluck sporadically. A method to quit plucking my eyelashes was to affix long acrylic nails to my real nails so I couldn’t really use my them to pull out lashes (which I usually do- tweezers are more for legs and eyebrows). I simply destroyed my nails trying to pluck and/or I reverted to tweezers. I was unstoppable. I tried many methods before turning to medication for help. This finally helped abate the all-consuming urge to pluck, but when I’m exceptionally upset or stressed I will still do so.

Through the years, my trichotillomania has also progressed to include dermatillomania- the picking of one’s SKIN. I chew on my cuticles, pick at any skin lesions, and dig at the skin where I’m trying to remove a hair. The dermatillomania is hardly a problem compared to my trichotillomania, however. My lashes are now scarce even if I do manage to let them grow because years of plucking has damaged the hair follicle. My legs are riddled with scars, ranging from small red dots to deeper, pitted, purple marks where I plucked and DUG my tweezers into the skin to grab a hair that was apparently too short to pluck. This disorder leaves its mark in many ways, but physically is only one. It’s embarrassing, extremely time-consuming and sometimes painful.

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I’m unsure how the Diagnostic and Statistical Manual of Mental Disorders (the DSM), lists trichotillomania, but it’s otherwise sometimes classified as a type of impulse control disorder, and has also been considered to be an addiction, or an obsessive compulsive disorder. It can be related to any number of psychiatric diagnoses, and can be triggered by various situations and circumstances. The one common factor is that the plucking seems to soothe and give the trichotillomaniac a sense of control and calm. Fortunately, this is one of the more mild deliberate self-harm behaviors when comparing it to the likes of anorexia and deliberate cutting (both extreme types of self-harm).

Aside from all of these terms and diagnostic jargon, I can tell you what the DSM can’t. I can explain to you how embarrassing it is to have literally, absolutely no eyelashes for weeks during your Freshman year of high school, being gawked at by students and teachers alike. I can show you scars from years of picking at the skin surrounding hairs that were audacious enough to resist the first plucking attempt. I can tell you that it’s incredibly frustrating to have your mother and boyfriend confiscate your 5 pairs of tweezers (including a hidden emergency pair). My eyelashes seem to almost tingle, beckoning me to pull them out, and once I start, it’s easier to find a needle in a haystack than it is to stop pulling. I can’t resist plucking the hair on my legs once I see them while bathing- I barely need to shave once I’m done plucking. Hair on my head is plucked according to its shade- extremely black hairs are pulled zealously, while the lighter, blonder hairs are left alone.

My trichotillomania is triggered by stress, anxiety, and sometimes depression. Subconsciously, I also think perhaps I pluck because it is sometimes the only thing I feel I can control in a world filled with breathing treatments, dissatisfaction with my body, doctor appointments, limited finances, relentless coughing, etc. In truth, it seems that there is always a reason to pluck.

This is not a public service announcement, but I hope it sparks some thought. It would be so wonderful if everyone knew how to function with daily ups and downs, but I struggle with this. Sometimes pulling and plucking hairs is my coping mechanism, though every hair removed feels like another failure. So until I learn to focus on the issues at hand instead of reverting to the comfortable but harmful ways of trichotillomania, I may be lash-less, scarred, and balding. But I’m patient, for self-worth and self-love regenerate just as quickly as hair regrows.

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I Hate CF

Sometimes I can almost forget that I have cystic fibrosis. Almost. Then a bout of pneumonia, or a lung bleed, or sinusitis, for example, lands me in the hospital and the disease crashes down around me all over again. This type of wake-up call occurred in big way a little over a week ago, when I was reminded of what a cruel, crippling, vicious, fatal disease cystic fibrosis is.

The details that led up to this hospitalization, from which I’m currently writing, were much the same as any other time I’ve been ill. An infection settled itself deep within my diseased lungs and caused me to cough up copious amounts of mucous, and wheeze, and gasp for air. This was accompanied by fatigue, headaches, dizziness, and so on. This time, however, I deteriorated much more quickly than usual, and it seemed as if I was getting nearer to a critical state each hour that passed.

In addition to the basic symptoms I’d had for a month or more, I found myself needing to wear an oxygen cannula under my nose in order to move around freely without setting off a coughing fit. Then the amount of oxygen I needed increased steadily. Each day it seemed that my lungs were being progressively saturated with cement instead of this precious oxygen. By the time I finally sought medical intervention, I could barely move around at all, even while wearing oxygen. My coughing was accompanied by gasping and gulping for air. I felt as though I would lose consciousness with each coughing spell, and the result was an excruciating headache that seemed as though I were being stabbed in the cranium. My lungs ached and crackled, and piercing pain and heavy pressure set in. Each coughing episode would begin and end much the same: cough, cough, gasp, cough, gasp-gulp, cough, cough, cough, gag, gasp, deep breath in, dizziness, headache, breathe, repeat.

My primary doctor knew I needed IV antibiotics, but before he could formulate an effective combination of medications for me, I’d already become a serious case. So I bypassed him and my regular hospital and headed to the only other facility that I go to- the University of Wisconsin Madison Hospital.

My mom and I made the six-hour trek to the UW Hospital, where the pulmonology department is quite well versed in treating cystic fibrosis patients. Loaded with oxygen tanks in the backseat, Mom’s trusty Toyota became the ambulance that delivered me to the safety of this hospital. Upon checking in at registration, I was immediately asked to take a lung function test to assess how my lungs were doing as compared to a predicted set of numbers. One very important measurement showed that I was testing at only one percentage point higher than the unofficial percentage at which a CF patient typically begins discussing a lung transplant. One measly, tiny, percentage point. Such a small number, but so extremely important and symbolic to me. Taking into account how shitty I felt, I was not at all surprised by this result. I became truly afraid at this point, though, because I realized that I would have to be comparably sick before any transplant facility would seriously consider giving me a set of lungs. In other words, I’ll practically be on my death bed when the transplant finally happens, assuming it does happen at all, and that doesn’t seem right to me. I don’t want to spend months in limbo, barely alive, hoping for some other family’s tragedy to become my second chance at life. That’s simply a reality upon which I try not to dwell.

The team at the UW Hospital set up a treatment plan for me, and it began to take effect only a few short days after my arrival. It was as though a weight lifted off my chest, and I was able to draw priceless oxygen into my battered lungs. For the first time in months, taking a deep breath wasn’t painful and it didn’t induce violent coughing. The doctors decided that it would be best for me to stay as an inpatient for the entire two week course of antibiotics, so here I sit, hooked up to an IV, doing nebulizer treatments and chest/lung physiotherapy four times each day, feeling much better now, and finally seeing some light at the end of this proverbial tunnel.

Despite the severity of my condition, I knew that I wasn’t going to die this time around. And I probably won’t die the next time I get really sick, either. But someday I will, and that’s just the plain truth. That’s what keeps me up and running- the same reason anyone else in the world makes a “bucket list,” regardless of health or lack thereof; fear of dying can either cripple you or motivate you. I choose to utilize that fear, and let it push me to learn and see and do new things. I just want to embrace life fully and live out loud, and hopefully make a small difference while I’m at it. Being able to reach out from my hospital bed by writing this is a pretty damn good start. Here’s hoping someone is listening.

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Growing Pains

I sometimes feel like everything I could have is just inches from my grasp- an apartment of my own, a better retention of the Spanish language, a set of firmer biceps, etc. So when I become intent on obtaining something, I can put the weight of the world onto it. Trivial pursuits become wars of manifest destiny. I believe I do this because I have a fatal disease that comes with a timer whose tick is the soundtrack in my everyday life. At the risk of sounding morbid, I won’t be around for any more pursuits, trivial or otherwise, once that buzzer rings. Therefore, even the mundane becomes important because that might be all I have the chance to achieve. From that perspective, the mundane doesn’t look so bad.

Last summer, after having come out of a 19-day hospitalization in February, I stumbled upon my new desired conquest. It came about after my mom had proposed a simple plan for me to have a garden. Her design included a dozen or more large flower pots arranged on an old picnic table that was set in the sunniest corner of our yard. A garden was an idea I had tossed around for a few years, so I had already been plotting for peas, carrots, radishes, beets, cucumbers, and tomatoes. Yet before we had even bought the seeds and soil, my most ambitious plans were truly for growing lavender.

Highlighting the fact that it wasn’t exactly typical for lavender to grow in the midst of a vegetable garden, my dad asked what lavender even was. I told him it was some kind of flower-thing, because I myself was actually unsure of the actual taxonomical classification of lavender. (I’ve read it’s a flower and an herb.) After he further asked what one does with lavender, I had to stop and think about it. I mentioned things like potpourri and homemade soap, but, truth be told, I didn’t really know what I was going to do with the lavender. I only recalled that a friend of mine had a pestle and mortar set full of dried lavender buds at her house when I was in junior high, and her mother would take the pestle and grind the buds until the aroma was released. This simple, heavenly thing inspired me at the time to attempt to grow lavender of my own in a small pot on the windowsill. Unfortunately, I was unsuccessful at a time when success was quite important to my shaping psyche. The only thing that sprouted from this attempt was a taste of unexpected disappointment and, moreover, a fascination with this finicky plant. With this passionate preoccupation budding slowly over time, lavender became the white whale of my gardening aspirations, and one more undertaking onto which I pinned my hopes and dreams.

Apparently, any gardener worth their blue ribbon-winning beans knows that lavender is a tricky flower to grow. Many buy a starter plant because they don’t have the patience or skill to grow this beautiful, aromatic perennial from seed. Of course I did not know this. I only learned this after the fact from reading how-to articles about lavender. I was such a novice gardener this past summer, that I had no clue I was so inept. I had figured (or hoped): put soil into pots, place seeds in the soil, water regularly, and reap the inevitable yield. I was so naïve. I planned for one pot outside and one pot inside because I didn’t know which scenario was more conducive to the growing of lavender. Then I faithfully bid Godspeed to the tiny little lavender seeds and nestled them in a bed of Miracle-Gro’s best blend.

Now I must tell you that I’m certainly not the most patient person you’ll ever meet. It’s just one virtue that I will never pick up. I knew that this garden, however, was going to require at least some patience. So I had planted my vegetables and lavender with hopes that the garden gods would expedite the bountiful blossoms. Each night I routinely watered and sang to my dirt-filled pots. The weather at this time became extremely humid and quite sunny. It was therefore no surprise when the first veggie crops sprouted after only six days. (I secretly suspected that my singing was responsible.) The perfectly formed, tiny green florets were nothing short of a miracle. I inspected them carefully, in awe of the growth that I had helped facilitate. But such rapid results were actually regrettable for my lavender obsession, for I now held the unreasonable expectation that they, too, would have such a hasty growth rate. I faced disappointment again.

In the midst of the burgeoning vegetable bounty stood my lonely pot of soil with lavender seeds. Only a few scant weeds poked through the soil. I allowed them to grow, however, just in case my untrained eye was unable to discern a weed from an early blossom. After watching every other planting endeavor prove fruitful, I began to wonder anxiously why this plant alone would not materialize. My heart sank as, week after week, my lavender refused to take hold. This pursuit had become another metaphor for everything important in my life. The one plant I was truly excited to grow was the only one that wouldn’t.

Just around the point at which my tenuous patience began to wane severely, just when I was about to solidify my failure and send my lavender (or lack thereof) to the compost pile, a small miracle happened. It was somewhere between week eight or nine of Lavender Watch 2013, and I was watering my pride and joy early one balmy evening. Like some tragic comedy, I had been watering the weeds that grew in the lavender pot. My broken heart couldn’t bear to abandon ship, though the moment was nigh. This time, though, as the slight mist from my garden hose grazed the mishmash of greenery in the lavender pot, I could have sworn I caught the scent of that elusive flower on the wind. I nearly knocked over my towering pea plants as I whipped back around to where I’d smelled the fragrance. My nose, like a bloodhound, sniffed it’s way to the source: one of the little clusters of “weeds” was not a weed after all. By golly. I had grown lavender.

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After weeding, this first lavender shoot remained. July 2013

 

I had to wipe away a few small triumphant tears before shouting for my mom to come outside and verify that I indeed had succeeded, that I’d actually had my lavender budding this whole time right beneath my nose. What I thought was eluding me had been mine for some time already. For at least a week, it turns out that while I jokingly cultivated these weeds, my lavender was also in there somewhere. What I had wanted was with me all along, unbeknownst to me. Had I literally stopped to smell the roses, or lavender as the case may be, I would have saved myself much self-doubt and heartache.

So I may become hyper-focused on things that others deem trite. My brass ring might be something quite simple. I can seem obsessive. But it’s these little victories that make up my life right now. Of course, sometimes I want to shoot for the moon and do incredibly grandiose things but I think many people like me feel that way. What we don’t often keep in mind, is that the moon isn’t so far away, and incredible things can come in the shape of small, purple flowers.

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This is my lavender as of February 12, 2014. It thrives indoors until I can bring it out under the sunshine of summer.

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Fresh Air

 

This is my first valid attempt to write something that doesn’t make you want to crawl in bed and cry. When I was in my adolescence, poetry was an outlet for my depression and almost all of what I wrote in my journals was extremely gloomy. I even prefaced a collection of my poems by stating: “You’ll never understand these words until you’ve hated yourself and everything you know.” I became quite adept at crafting my life in words, and I wrote some worthy poetry in my depressed state. However, this unfortunately lead me to feel as though my serene and blissful feelings (and yes, I did have many) weren’t as poetically valid as my dark ones since they didn’t yield the same creative results. I therefore never really learned how to embrace optimism in writing because contentment equaled boredom in my opinion. It’s a shame, really, to have lived a life that was as filled with elation as it was with melancholy, and only find words to describe the latter.

So here begins my journey anew; a life in which the sound of my laughter can heal, my pen does not drip only pain, and a minor setback doesn’t need to become a 3-page dissertation on the futility of faith. Instead of pessimism or optimism, I will choose realism and let the cards fall where they may. It’s important to write about (and experience) joy and hope, just as it’s important to acknowledge the shadows sometimes; focusing on one often highlights the existence of the other.

In order to move forward, though, there is one matter that must be addressed. I do so not to shock or elicit sympathy, but to simply establish the framework from which I write. I have a genetic disease called cystic fibrosis that affects many areas of my body, but for me it’s mostly my lungs that are the problem. CF will shorten my life, but there are treatments and medications that are available to me to keep myself as healthy as possible until there is a cure. (And there WILL be a cure!) As one might imagine, I have some coping issues because the myriad things I cannot do and will never be able to do is, frankly, pretty shitty. My depression stems mostly from having cystic fibrosis, so I might be tempted to say that life without CF would be damn near perfect. However, I often think that my life is as great as it is partly because of my CF, not in spite of it. I don’t mean to trivialize my disease, though, because it is a hardship that few can understand. It reaches its ugly fingers into every aspect of my life, so in order to understand where I’m coming from, you must know where I’ve been. So please follow me on this new adventure as I better learn who I am, what I can give to the world, and how to catch my breath. 

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