You Can’t Put Your Purse in my Back Seat Because….

Many of you who know me as an acquaintance are often shocked to hear one of my deepest, darkest secrets: I am a hoarder.  Although not as bad as the hoarding cases featured on reality TV, I am definitely on the fringes of that world.   I have always been this way, from my earliest memories.  No one can explain why, not even me.

Although I like neat environments, I don’t feel particularly compelled to keep one.  As with neat freaks, my hoarding behavior seems to stem from underlying anxiety.  I have come to view my stuff as a weird comfort and I tend to see the redundancy of things like putting the laundry away as a waste of energy.  When there is stuff lying around, an intruder will bang into something should he or she manage to get into my home.  This will create noise and maybe give me an extra second or two to wake or reach the phone or get out through a window.   In a neat environment, such a person could sneak up on me and overtake me.  Weapons of opportunity are not as visible if they are covered by magazines or towels or if books are sitting on top of them.

My car is identical to my living space.  I keep a blanket, shovel, my bike rack (in winter), extra antifreeze and fluids, a broom, a stool, my speaker stands, foldaway table, an old camera tripod, and large plastic bags in the back seat.  These things all have a purpose for when I am driving, lest I get stuck somewhere or come upon an accident.  Many of the other items are things I carry in and out of coffeehouses for my shows, and it’s just easier to leave them there.  It’s also harder for a criminal to hide out in my backseat,  lying in wait for me to return to the car in the dark.  When I am in “fitness mode”, I tend to leave extra sneakers on the passenger side floor, along with my yoga mat.  I have some extra gloves and a pair of boots for winter.  At any given time, you might find four or five pairs of sunglasses floating around in there, or paperwork from an oil change back in 2005.

Maybe I shouldn’t be okay with this, but I usually am.  That is, until something goes wrong with the car and I have to take it to be serviced, or someone wants a ride.  I have managed to come up with every excuse in the book to explain my stuff to mechanics or to convince someone I really want to give them a ride but cannot.  I’ve taken to being honest lately, and even so people do not believe how my car is until they see it.  Then they politely defer the ride and I am left embarrassed.  When the question of a ride comes up, it’s like when someone unexpectedly rings my doorbell:  I panic.

I panic because I know people will judge me for this behavior.  I panic because I fear people will look at me in disgust.  I panic because of what the landlord might say, even though my place is not “food and waste” dirty (it’s just full of books and magazines and gym equipment and clothes and pet toys).  I panic because I fear people will think of less of me if they know the truth.

I am facing the “ride” situation with regard to a trip to Philadelphia next Monday to see the band Arcade Fire.  I bought two tickets several months back, with the hope of finding someone who could come along.  I rarely get to see a concert with another person, and I thought it would be fun.  I also thought that once this “concert mate” decided to come along, I could somehow convince him or her that we should take the train or that they should drive and I pay for everything else.

That’s not going to happen this time, however.  My friend is giving me the well-meant “I don’t care, my car is a mess too” promise, leaving me in a sudden rush to at least straighten up my front seat.  In the coming days, I will have to dedicate another hour or so just to make it tolerable for her.  My fear is that it won’t be clean enough, especially if she is a neat freak.  I have horrific ideas about the things she might say about me and my car to our other friends, or to her friends I’ve never met.  This person has never spent a good chunk of time with me either, and my quirky personality might make things worse.  I am as nervous as I would be if Arcade Fire themselves wanted me to drive them to the show, maybe more so since they are not people I interact with every weekend and who know the same people I know.  They are a quirky band, so maybe they would “get” me.  But most regular people do not think as I do, and I am acutely aware of this in these situations.

The same thing happened when a friend insisted we take my car to a U2 concert in Pittsburgh a few years ago.  I was all set to take the train and tried explaining how relaxing the train is and how much time we will get to chat and whatnot, to no avail.  She said if I didn’t want to drive, she would drive my car (gas prices were the issue.  I have a Honda sedan and she has a Hummer).  I think I spent the better part of an entire day moving things into the apartment and dusting and scrubbing and vacuuming, things that happen once or twice a year, maybe.  I am sure my neighbors were looking on, as they will be tomorrow, as I burrow and dig and rearrange things.  They’ve all seen the inside of my car, for sure, as they walk past it en route to the front door.

I have, over the course of my life, made promise after promise to myself and to others that I will change my behavior.  I meant it each time.  But I am now middle-aged, and I know this behavior is part and parcel with my personality.  I am not sure how to make myself want to change.  Any short-lived efforts I’ve made in the past have been centered on what other people want.  Like losing weight or quitting smoking to impress others, it doesn’t last because I need to want it badly enough.  That, and I don’t see anything fundamentally wrong with it.

A Clogged Drain and a Thorn in My Side

           It was October, 2013.  For the second time in a week, I found myself snaking a clog out of the shower drain.  I was horrified by the massive, slimy monster I retrieved.  More so, I was haunted by what it meant.

           I maintained a thin state of denial, diagnosing myself with a condition called “telogen effluvium”, like the first time I had massive hair loss.  Telogen effluvium (TE) occurs when you experience massive hair loss in response to a stressor occurring three to six months earlier.  The timing was right for this to be a TE episode, since I was sick with a respiratory illness the previous June. 

          My first hair loss episode happened in 2010.  A dermatologist, finding nothing wrong with my scalp, diagnosed me with possible TE.  He also said my hair loss could be due to tension from headband use.  Just to be sure, he told me to report the hair loss to my primary care physician.  So I did.  My PCP concurred that it could be TE or headband tension but sent a plethora of blood tests to cover his bases.

          The blood work opened a gate to a difficult path and a hormonal nightmare.  My prolactin level was very high while my cortisol, DHEA, and growth hormone levels were very low.  These indicated the presence of a tumor.  I was immediately referred to an endocrinologist and scheduled for an MRI.  The tumor, though small, stood out as if to say “here I am!”

           Low DHEA levels cause hair loss.  So much for TE and tension-related damage.

           Although pituitary tumors are usually benign, there is only so much space inside the skull.  All tumors of the brain have to be carefully monitored and treated or they will cause pressure.  My little tumor was suppressing some of the other functions of the pituitary, putting me in a life-threatening situation.  The doctor started me on a drug to shrink the tumor and put me on oral steroids.

           Being on oral steroids meant I had to wear a MedicAlert bracelet and carry an injectable “rescue dose” everywhere I went.  The rescue dose would be needed in the event I contracted a vomiting illness.  If my system is suddenly cut off from the hydrocortisone, I will go into a crisis and possibly die within two days.  Sooner if I have a fever.  A vomiting illness means a hospital stay until I am able to absorb the pills.  The thought of contracting a vomiting illness under these conditions created a severe phobia of social situations.  Even for non-vomiting illnesses, like head colds, I had to follow a formula.  Double up my oral dose if I have a cold.  Triple it and get to my PCP if I have a fever.  Make sure the anesthesiologist and surgeons know my condition before any surgery, so they can give me a stress dose.  Double the dose on days when I do distance races or hard training.  It was a real headache.

           The Medic Alert bracelet and the rescue injection each served to remind me I am no longer completely healthy and that I don’t have as much control over my body as I thought.  They served as markers of weakness and made me feel chained.

           Yet a few days after diagnosis I realized that because I don’t have complete control over my body, I have no clue what other illnesses or problems might be brewing at any given time.  I had a paradigm shift.  Suddenly, there was no room for negative things or people in my life.  I focused on the things that add value and meaning, while breaking free of my selfish, self-loathing, and depressed mind set.  I even started to write a book about my experience.

          People who had my type of tumor assured me theirs was treated and cured to the point where they were off all medication, within a two year period.  The doctor herself expected me to recover quickly.  That helped me maintain a positive attitude too.  By fall of 2012, I was deemed well enough to come off the steroids and I even did the Harrisburg Marathon without causing a drop hormone levels.  My cortisol level remained good and I had a full head of hair.

           Things went well for about seven months.  I had tough colds in April and June, but my cortisol level was still normal.  Then my hair started falling out again in September.  Once again, I thought it had to be TE or the tension of ponytails and headbands, since I assumed all my hormone levels were good. 

           I finished the Steamtown Marathon in Scranton the second weekend in October, and I felt fine afterwards.  By that point I accepted my hair loss as “the way it is”, bringing middle age in as a factor.  I could see my scalp this time around and contemplated buying a wig. 

The following weekend, I did my last long session before the New York Marathon and again felt fine afterwards.  The day after that session, I started taking a medication to treat a longstanding hoarseness issue as a part of a treatment regimen to get my singing voice back.

            I had a terrible reaction to the drug.  I experienced what is known as a die-off reaction.  Die off reactions are the result of a massive immune system attack against the offending organism or tumor, and the effort to expel the toxins released by the invader.  Six days into this aggressive therapy, I started to feel very weak.  One night I was at work and experienced a “panic attack” that lasted most of my shift.  By morning, my thinking was cloudy and I started retching.  I was not well enough to drive home, so I ended up in the emergency room.

           My cortisol level had bottomed out.  It was the Wednesday before the race, and I was forced to drop out of the New York Marathon.

           I cannot tell you how disappointed I was.  My two year window for a cure was almost closed, yet my pituitary failed me at the last minute.  I needed an emergency injection of hydrocortisone and was put back on the oral steroid.  I had to order another MedicAlert bracelet and carry the rescue dose again.  Both serve as tokens of weakness and remind me of constant threat.

          The endocrinologist is puzzled.  She thought maybe it was a one-time episode and rechecked my levels a month later.  There was no improvement.  A second month later, on the two year anniversary of my diagnosis, there was still no improvement.  I was placed on a higher dose of steroid.  Today, February 27, 2014, I learned my DHEA level is also much lower than it was at the time of diagnosis.  On almost all fronts, I am worse than I was two years ago. 

          My gut feeling about the clogged drain was right.  It seems like such a trivial thing, yet look what it meant for me.  This has forced me to question whether or not I will ever be cured.  The benign, “easily treatable” tumor and its insane hormonal influences might very well be a thorn in my side for many years to come, wreaking havoc on my body.  The low DHEA and the steroids are sapping calcium from my bones, as we know from newly diagnosed hyperparathyroidism.  I am only forty six and already a high risk for osteoporosis on account of all this.  The drug they gave me to shrink the tumor has most likely caused scarring in my lungs, which is interfering with my heart function.  I have dreamed of the New York Marathon for a long time, a race that’s very hard to get into.  I am beginning to think it will never happen.  I wonder what else “won’t happen” as a result of this nagging problem.

Telogen effluvium.  Head bands.  Clogged drains.  Disrupted life.