Chutes & Ladders
Do you remember the childhood boardgame, where you would work
your way up the ladder turn by turn, only to roll some unlucky
dice and land on the chute to take you back down to square one?
But what if that chute went to Square –10 or –20 instead?
After two months of puzzling over the unwritten rules of this
illness that has been weighing me down, I’ve hit on it:
Chutes and ladders.
Since running the Boston Marathon while fighting a “bug”
two months ago, I have been on this roller coaster of recovery
and relapse. I slowly start to get better, only to get frustrated
and impatient when I have a setback, do something taxing anyway,
and further descend into illness all over again. This past week
I experienced a frightening chute to Square -10. The following
week I had been still ill, but thought myself well enough to try
to get back into the boxing gym, which I missed so dearly. I had
intentionally stayed away until now for the past six weeks, knowing
it is an “all or nothing” kind of training and hard
to hold back. Friday, I went in, my body sending me some signals
it was not ready or able today, but did so anyway. From this day
on, each day was a little worse, feeling a little less energy.
The next day a dance class was too much. By Tuesday I was too
zapped to ride my bike to school anymore. Wednesday, a walk in
Rock Creek with a friend and our dogs did me in. And by Thursday,
I could barely lift my head from my pillow, and muster the energy
to walk Quatorze once around the block. Meanwhile, I had started
to experience new symptoms – insomnia, joint pain, and pins
and needles in my hands and feet – in addition to the wretchedly
ill feeling, headaches, swollen lymph nodes and sore throat I
had been suffering from on and off for two months now, as I had
last year. I felt like I was falling in slow motion, but every
time I thought I had hit bottom, I kept falling. One minute I
was flying high towards a sunny destination, the next my body
had been hijacked by kidnappers with uncertain designs, who spoke
a language undecipherable to all but them. Meanwhile, my rescuers
- the doctors – looked at my tanned skin, toned body and
clear eyes, scanned my seemingly normal test results, and assured
me I just had a virus, and would be fine. Fine I was not.
While the doctors shrugged off my state, I saw all signs and symptoms
pointing to one thing: Chronic Fatigue Syndrome, a potentially
life-devastating illness shrouded in myth and mystery. Though
theories abound, they do not know what causes or cures it, and
have no definitive test for it. The diagnostic process involves
ruling out all the usual suspects, from AIDS to lupus to mono,
and then having the condition for six months, a travesty in my
opinion because it seems that the longer it goes undiagnosed,
the worse it gets. Personally, I felt I didn’t need to wait
another four months to be certain of it: Everything I read, everyone
I talked to with this resonated so much with my experience. As
much as I wanted it to be a parasite I could vanquish with a single
pill, instead it was looking like I faced a systemic immune breakdown
for which treatments were few and tended to manage symptoms rather
than cure the underlying condition. I called a few of the handful
of doctors working to treat people with this (many won’t
even take new patients, as there are so few docs treating it,
and so many people suffering from it), told them my story, and
each one, though of course not giving me a diagnosis on the phone,
told me my story resembled the hundreds of other patients’
stories they had seen over the years. I wrangled an appointment
with one such specialist on Monday to hopefully get a definitive
diagnosis (or not, which would be great) and treatment plan.
Chronic Fatigue Syndrome. Sounds like the ailment of a pale, fragile
Victorian lady, like "the vapors," something that called
for sniffing salts, not something that could take a marathon runner
and boxer who usually suffered from too much energy down for the
count. Indeed, its name does it a huge disservice which probably
contributes to it not being taken seriously by much of the medical
establishment or media for so long, though there are now specialists
at Harvard Medical School, the CDC and NIH hard at work to understand
this condition, which can be disabling if no more so as MS or
many other autoimmune disorders, and reportedly affects more Americans
than lung or ovarian cancer. It is not life-threatening, although
the pain and suffering can be so great that suicide is often as
much as concern of doctors treating this than the symptoms themselves.
The jazz pianist Keith Jarrett calls it the “living-dead”
syndrome. Jarrett got so ill with it that the child prodigy couldn’t
even listen to music for two years, let alone play it. He recently
made a tentative comeback, proclaiming himself some 70% recovered.
Few people who have battled with this would dare say they have
beat it, knowing that events can easily trigger a relapse if one
isn’t careful.
Indeed there is quite a Who’s Who of CFS sufferers and survivors,
many of them athletes: Michelle Akers, the US Olympic women’s
soccer team great; speed skater Olympiad Amy Peterson; Peter Marshall,
the British squash champ. Most of them went through a year or
more before even getting diagnosed, so I can feel lucky I am learning
about my illness in the early stages, again, assuming that is
what I am facing. I strongly suspect that more people are walking
around with a latent form of this, but because they don’t
push themselves in the kinds of ways that many people who seem
to get it do, it never manifests. One of the theories is that
the immune system goes on high alert after a stressful event or
serious illness (many get it on the tails of a bad flu or case
of mono, and then just never get better), and fails to recognize
it’s safe to back down again. And as what makes us feel
sick when we have a virus or allergy is the immune system’s
response to that invader, and not the bug or allergen itself,
it makes sense that one would feel so miserably ill with a syndrome
like this, and have vital signs and usual tests of health come
back normal.
The avid Googler I am, I scoured the web for everything I could
find about the illness, finding more questions than answers, more
bad news than good: that many if not most people never recover;
that CFS sufferers often develop a secondary condition called
fibromyalgia, a fancy word for chronic pain (a beginning symptom
being the funny pins and needles in my hands and feet I have developed
over the past couple of days); that some people get the illness
so badly they are bed-ridden for life, so severely fatigued they
didn’t even have the strength to talk. (Laura Hillenbrand,
the DC-based writer who wrote the best-selling novel “Seabiscuit,”
did so from her bed, having developed CFS at age 19. She was so
debilitated by the illness there were days she could only write
a single line. I don’t even want to read a book, let alone
write one right now; the superhuman courage of these survivors
is beyond me.)
As I watched life as I knew it recede in the rearview mirror,
I suddenly fell into a pit of despair and depression, taking the
trend line of the past several days and projecting it downward
in the future, imagining never again getting on my bike, dropping
out of school. Having just had to stop midway through an exam
yesterday and ask my professor to take the rest home as I felt
so ill I couldn’t even think, dropping out of school suddenly
didn’t seem such a remote possibility anymore. (One of the
gurus of CFS developed it in med school, had to drop out, and
ended up living in his car, not only penniless but saddled with
med school debts. He eventually got better, finished med school
and now has made it his life’s work to research and treat
the illness.) But if there is anything worse than living through
a day miserably ill, it’s compounding that by living out
a lifetime of such days in your mind. Calling on friends for help,
I managed to settle down and accept where I was today, a worn-out
little young lady whose battery had suddenly failed to recharge
with rest or food, whatever the root cause.
As rapper Common put it, “God don’t ever give me nothing
I can’t handle.” Maybe this has been put in my path
as my next step to Buddhahood, teaching me to learn more deeply
the lessons Buddhism has taught me about suffering, change, impermanence,
acceptance, gratitude, attachment, awareness, and living in the
moment and not the past or future. I used to always feel so impatient
doing the meditative walks that would come after a formal meditation
“sitting,” my boundless energy and restless spirit
itching me to move faster. But for today, the slow steady steps
of a Buddhist monk is all I can handle, and so I must embrace
that pace, for fighting it will only increase my suffering.
This may all sound melodramatic to you, reading this – indeed,
I’ve only been sick for a few months, and gravely so for
a less than week. I recognize that I did get a milder form of
this last year and spontaneously recovered. My body apparently
has the wisdom to heal itself, and I have to trust that. Just
as a week ago I was fairly high-functioning in spite of my illness,
in another week I may be back up and running (or at least walking
briskly!). However, this time it is a more full-blown case of
this than last year or earlier in these last few months. So I
feel like I am at a critical juncture, where everything I do can
either serve to make me better or worse, and have to do all I
can from my positive thoughts to pristine diet (weaning myself
off sugar, caffeine, and alcohol for the time being). And hopefully
your good thoughts and prayers can contribute to my comeback too.
I may have taken my health for granted a bit until now, but I
have never taken for granted my friends and family who do so much
for me. At the risk of sounding gooshy, I have always said that
friends and family are the true source of wealth in life, and
I can say that today that is true more than ever. My friends here
have been so amazingly supportive, driving me to school, staying
with me, taking me to get groceries.
Yesterday, a friend picked me up from my aborted exam, and took
me to the arboretum to finish it at my own pace, lying in the
grass after the huge mental effort it represented. He took me
to his sunny apartment so at least I could lie on a different
couch than my own for a change of venue, fed me steak and greens
and just let me be. By late in the afternoon I had enough energy
to walk the ten blocks home, which was no small miracle, considering
the state in which I started the day. My senses were in a heightened
state, seeing so much joy in the faces of babies and old ladies
passing by, the barber shops and baseball games in swing, the
gentle breeze on my face, the rich fuschia and apricot of summer
gardens in bloom. I have no doubt that the serenity of the day
and his company helped make that walk possible.
****
Post
script, July 10:
School’s
out for summer… yeah! Such great timing… two months
with nothing on the agenda but R&R. We just got back from
a week on Lake Norman with my family & my mom’s friend’s
family, staying in a friend’s gorgeous lakefront house.
Some pix at http://aprilpics.shutterfly.com/action/.
There was a clinic specializing in chronic fatigue syndrome just
45 minutes from where we were staying, where I was lucky to get
an appointment with Dr. Charles Lapp, one of the leading and longest-standing
researchers & practicioners in this illness. Most fun doctor’s
visit I’ve had in a while- he was quite the jovial Southern
gentleman! He was concerned about my case but optimistic –
He feels like I am at an early enough stage of illness that I
still can “save my soul.” While my symptoms &
storyline are classic to CFS, the fact that I have not developed
some of the other hallmark symptoms – chronic pain/fibromyalgia,
cognitive dysfunction, sleep disorder, and sensory/food sensitivities
indicates that it is not yet full-blown. At this point he is confident
I can keep it from getting worse, and work my way up to recover
my health (though how fast or slow of course he couldn’t
say). He told me the uplifting story of two athletes he had worked
with who went from being bedridden with CFS to competing in the
Olympics – one winning a gold medal – in a matter
of a few years. As a cautionary tale, however, he told me about
working with pro cyclist Greg LeMond, who battled with the illness,
worked with Dr. Lapp to achieve full recovery, and then blew himself
out with the Tour De France, relapsed and is now bedridden with
CFS.
So I am taking it easy, staying within my limits, pacing myself,
which he indicated as keys to recovery. Learning to just be and
not do for a while. I’ve been able to do some free weights,
yoga, walks and swimming, so I’m learning to content myself
with that for now and take solace in Dr. Lapp’s words that
if I behave myself now I won't just be running marathons again
but winning them!
