June 8, 2006 at 11:57 am (Uncategorized)

The other morning Andrew ran into my mother’s room in our borrowed apartment, hopped into her bed, and proclaimed, “I really like being in Philly.”  I’m glad that someone around here is having a good time, although I’m a little perplexed about exactly what, besides Grandma, is so awesome about Philadelphia for my two-year old son. 
My best guess is that in addition to the greater variety and frequency of motorized vehicles passing him here than in Helena, he’s thoroughly enjoying the lack of structure.  At home, bedtime is (theoretically) enforced, as is naptime and mealtimes.  Here, he gets to stay up late reading books, having pillow fights, and weaseling one more bedtime story out of either my mom or me.  Because the time change has screwed up all of our internal clocks, I tend not to worry if he’s still running around at 11:00 PM and is napping until nearly 8:00 PM.  His diet is a lot looser here too.  I wouldn’t say that I’m a food Nazi at home – more like one of Mussolini’s Black Shirts.  Not much junk food; fruit and veggies with every meal; water or rice milk to drink; and a nutritious, organically-raised protein source.  Here, he can have a burger and fries twice a day, and I don’t bat an eye.  A calorie is a calorie, I tell myself, even if it comes from a potato chip or a cookie.  I’ve drawn the line at soda, though.  Well, and double lattes.  He also gets a bunch of toys for simply keeping quiet and not acting like a cannibal on the airplane flights. 
Andrew’s delight in a less rigid existence makes sense to me.  After all, some of my own best childhood memories were from summers when my three siblings and I, along with other kids on the block, formed a roaming pack that simply “did stuff.”  I also loved days when my mom would drop us off at the pool and we would spend hours floating in the water and getting sunburned.  No camps, no routines, no activities – just time unmoored from obligation.

Now that I’m an adult, though, life without a schedule has lost its allure.  Unlike my freewheeling toddler, I don’t really like being in Philly.  My only task for these eight days is to show up on time for doctors’ appointments or tests.  You’d think that with this open range of time to wander about in, I’d feel rested and refreshed.  Instead I am exhausted beyond reason, moody, and overwhelmed.  I want to go home. 
I’m convinced that structure is what keeps most of us sane by trammeling the realm of the possible.  Without it, we would be overwhelmed with the range of possible options for what to do with the next minute.  And if you are like me, that overwhelmedness would translate into three slices of chocolate cake in bed and a nap rather than in doing too much.  I guess there are some people who can twirl through the universe without schedules or obligations, but I’m never sure they’re happy as much as they are simply unfettered.  We all say we want nothing but time, but once we get it (in the form of a long weekend, a vacation, or retirement) we usually bottle up the sea of time into something more manageable – structured activities, classes, or even something as small as going to the same café every morning to begin the day.  I like to think there’s a global undercurrent to our marking up time.  Whenever I read Genesis, I’m struck by how God spends most of his efforts separating and segregating aspects of life from one another.  Can’t you almost see him with his Palm Pilot creating the world, structuring the universe and time into those bite-sized bits we arbitrarily call days? 
One of the more difficult aspects of feeling lousy all the time, as one often does with a chronic illness, is the havoc it wreaks on this planning and structure that seem so fundamental to the human psyche.  For the past couple of years, I have had little success in keeping any sort of momentum going — professionally or personally.  Take these sojourns to the other side of the country.  “What’s the big deal?  You’re only gone ten days.” I can hear someone saying.  “Why don’t you think of it as a vacation?”  Well, for one, Philadelphia is not my first choice for a vacation site.  Don’t get me wrong; I’m sure this city has many lovely qualities.  I’m just not getting to see them as I wander through the basement hallways connecting the seemingly infinite number of dreary buildings comprising Penn Hospital.  And nothing against the city of brotherly love, but there are other places on my “to go” list I’d rather visit first. 
Also, ten days in medical and structural limbo is a lot of time to leave behind the recognizable trappings of order in my life, especially since I lose two more days traveling and a day on each end of the trip packing and unpacking.  I can almost guarantee that I will pick up some vile germ on one of my flights (in fact, right now Andrew and I are enjoying a delightful stomach bug) that will further slow re-entry to normal life.  The upheaval of traveling throws Andrew off for at least a week afterwards.  He is surly, temperamental, and very insistent that a new truck will help him stop yelling.  He also demands hot dogs for three meals a day, and his favorite phrase becomes, “I want it.”  Just thinking about post-trip Andrew makes me want to sleep — for a very, very long time.
Finally, fourteen unmoored days every year — spent neither in the pursuit of pleasure or profession – wouldn’t be that bad, but having to do this every three months is beginning to wear me down.  It’s not like I relish meeting the White Coats and getting shot up with the latest dye and filling out the same freaking form yet again.  The psychic toll of these trips lasts much longer than their real duration, particularly when I remember that I will likely have to make these quarterly pilgrimages to places I don’t want to visit for the rest of my life.
Before I embarked on this trip, I set as a seemingly manageable goal of not losing my focus on my life. On these long medical trips, I usually forgo exercise, writing, reading anything other than trashy magazines, and thinking about the caloric content of anything I put in my mouth.  I typically spend my spare time either worrying or avoiding worrying — enter the eating whatever I want and the trashy magazines.  I’ll say in my defense that I’m usually kept pretty busy with a fun-filled itinerary of tests, tests, more tests, and a doctor’s visit, but, still, I surrender to the chaos with too much readiness. 
So in keeping with my resolution, I brought along reading I have to plow through before I begin writing a magazine article with a fast-approaching deadline, as well as my laptop to work on this blog.  I also packed my heart rate monitor, my running shoes, and my iPod to make sure I got in five workouts a week.  But, as it usually happens, my best-laid plans had unwoven themselves before I’d even enacted them.  Since we left the hotel, I have no Internet connection; the laptop I’m using is capricious; and my articles are putting me to sleep.  Also upon leaving the hotel, I’ve lost easy gym access.  I called around town today and discovered that the going rate for a day pass is $25, which is way out of my budget.  I found one place that was mysteriously offering free 7-day passes – and it’s called “Sweat” to boot.  But it’s way across town, and by the time I’m done with the doctors, I shudder at the thought of negotiating Philadelphia’s maze of three-foot wide one-way streets clogged with angry people with dubious driving skills all in a hurry.  Plus, I don’t want to stick my Mom with Andrew for the entire day and then flit off to the gym in the evening.  Well, actually I do want to do that, but it sure doesn’t seem nice. 
Losing control over the plans of daily life isn’t something peculiar to medical travel, though.  Since getting this disease and getting Andrew, I start each day with what feels like the giant spin of the energy roulette wheel.  Will I feel crushing fatigue the minute I open my eyes? Will I have aches and joint pain that make it hard to walk around the house? Will going to the gym loosen me up or make it worse? Will I get a migraine? Have I caught some other illness that will make me stay in bed?  How numb will the left side of my body be from the peripheral nerve damage from the sarcoidosis and will it cause me to trip and fall on the stairs yet again? If I push myself to work, will the psychological benefits of accomplishing something outweigh the invariable physical crash?  Or, will I feel fine when I awaken, ready to greet the world with some pep in my step?  Can I stop worrying about how I’ll feel and just get out and enjoy the day?  It’s hard to make plans, meet deadlines, or even schedule a meeting when doctors’ appointments eat up most of the time with my babysitter and I often feel like I can’t keep my eyes open and my limbs functioning when I’m actually home.  
I really want to delete the prior paragraph because I sound like one of those people that I used to inwardly roll my eyes about before I got sick.  I would hear about people with chronic fatigue syndrome or a similar condition and think to myself, “Well, that’s not a real illness.  You’re either sick or you’re not.”  Wow.  Sometimes when I ponder the asinine thoughts that passed through my pea-brain before I had sarcoidosis, I wonder if perhaps contracting this disease is a bit of karmic alignment.  But at least the forces of retribution let me have a medically confirmed weird disease.  I can’t imagine how hard on myself I would be if I had morons telling me I wasn’t “really” sick every other day. 
I’m keeping the paragraph because it sheds light on life without momentum — which in my view is one of the defining aspects of a chronic illness.  It’s a lot easier to get up and go to work every day when you’ve been getting up and going to work; the first two weeks of an exercise program are the hardest, say the professionals.  After you’ve gotten into a routine, going to the gym becomes a habit.  Living with constant sickness (or the threat of constant sickness) means that every activity of every day has to be begun anew.  It’s an extremely good week for me when I’m not too sick to miss at least one day of work.  I feel like a long jumper forced to begin my leap without a running start.  “Jump!” I scream to myself, but my legs are mired in sand. 
Jay often says that I have unrealistic expectations for myself on these trips.  He counts keeping myself sane as an achievement when I enter the land of the doctors.  He says I should be much more patient with myself when I’m sagging a week after our return, and sometimes he’s right.  About a year ago I had to have a spinal tap done in Denver.  Being me, all medical procedures must necessarily result in the worst possible outcome, which in this case, meant the hole reopened somewhere in Wyoming on the drive back home.  I had the most excruciating headache in my life near Cheyenne (and I get bad headaches a lot), so Jay pulled into the emergency room, where they patched the hole in my spine with spinal fluid they took from another part of my back.  Double yuck.  Anyway, I was working on a reference book then and became extremely angry with myself for not getting right to work the next day and for feeling lousy for a while more.  In retrospect, that was weird behavior on my part.
But I do think I can do a better job of at least pretending to have structure on these trips.  Otherwise, I’m going to feel like Andrew when he’s sitting in the swing at the park and desperately wants to be flying as high as “Charles Lindbergh’s plane,” as he says.  Without a nudge from me and without that beautiful momentum to keep him going, though, he’s stuck in limbo — his legs dangling in the air, but decidedly earthbound.  I’m not asking for much from myself, I think, just a little nudge to keep me going.  I don’t need to go as high as a rescue helicopter, which Andrew also likes to tell me.  I’ll settle for somewhere near the treetops.  Is that too much to ask?  Who knows.  But tomorrow I’m going to the gym.

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