Wednesday, December 30, 2015


Just in case you were wondering, 
magical thinking is alive and well here in St Louis; 
in fact, MY house would seem to be the epicenter
for the region. 

While I’d accepted, long ago, that there was no magic pill
that would immediately 
render me smarter, wiser, thinner or richer, 
I apparently still harbored the fantasy
that there IS a magic pill somewhere, 
that would restore me to my previous, totally taken for granted,
 pain and fatigue free style of life. 

How do I know I believed that? 
Because I was absolutely crushed during a visit this week to my Rheumatologist 
when we discussed the addition of a ‘biologic’ to help control my RA – 
and he refused to prescribe it. 

A few caveats here before I proceed with my end-of-the-year-litany-of-complaints …

I know there are people in far worse pain, 
with far more serious medical conditions than I. 
My autoimmune disease probably won’t kill me – 
unless death by whining becomes a real thing.

I know I have the totally first world problem of being called out of retirement 
to a job that’s rewarding, making a difference in children’s lives 
and involves working alongside
creative, funny, talented and compassionate people; 
so I’m more tired now when I do it, 
boo hoo, right?

At least I have 2 kinds of health insurance that allows me to see all these specialists 
who can’t figure out what’s going on with me … 
which puts me ahead of, oh I don’t know,
3/4ths of the country’s population. 

I’m not oblivious to my privilege … it’s just my pain sometime obscures it. 
And no amount of Vitamin I
(as pilgrims on the Camino call Ibuprofen)
is making it go away. 

So, it’s no wonder I was looking for a quick fix; 
a shot to give me a shot
at having the life, energy and mobility I had before…

and apparently, that doesn’t exist. 

The oncologist is still not sure what I have – 
but he’s willing to give it more time to develop or declare itself.

He’s not willing to do a bone marrow biopsy at this point, 
thinking it would be premature and not yield enough new information 
to warrant either the expense or distress. 

My Rheumatologist is not willing to prescribe a biologic, 
which would suppress my immune system
even more than the methotrexate I’m currently on, 
and, in his opinion, 
allow whatever is going on to develop full blown and irreversibly 
(most likely leukemia or a lymphoma).

Until I have a bone marrow biopsy to say what IS going in my bone marrow, 
he’s not going to be the one writing a RX which would start me 
sliding down the slippery slope. 

Which leaves me stuck in the middle, 
feeling like crap, 
and, after decades of working with all kinds of doctors,
totally understanding,
where both of them are coming from. 

He WAS willing to try a much milder drug 
(which only blinds 1 in 5,000 people and was developed to treat malaria 
but seems to work on RA as well), 
and I’m 2 days in – with no notable difference – 
but hope springs eternal. 

I keep remembering a scene in a movie
when Jack Nicholson walks through a therapists waiting room,
looks at all the miserable schlubs sitting there 
and loudly says, to no one in particular,

What if  THIS  is as good as it gets?” 

That single question was enough to make me hate the movie.

I’m not ready to admit that THIS might be as good as I get – 
although conversely,
and superstitiously, 
I do recognize that things can always get worse.

I’m glad the year is coming to a close. 
I need a mind re-set.

Surely there’s a magic pill
or an easy button for that!

Monday, December 21, 2015

Twas the week before Christmas

This is the season of rising in the dark,
and walking to the parking lot after work 
by the glow of street lights.
This is the season of immersion in color, lights and children,

This is the season of returning home, 
turning the thermostat back up (to 68 degrees) 
and declining all opportunities to leave the house again.
This is the season of fuzzy socks, baggy punjammies, down duvets 
and the glow of Christmas lights as I sit reading while the dogs dream.
This is the season of words – 
in the books I read,
the songs I sing 
and the emails and letters I exchange
with beloveds far away.

This is the season of gray, damp days.
This is the season of dump chili, thick soups, simmering stews 
and dark chocolate peanut butter cups from a nearby Trader.

This is the season of moments with friends in crowded, noisy restaurants, 
exchanging secrets and hopes 
for the coming year.
This is the season of mystery,
ancient words
and communion with all the saints.
This is the season of tearful goodbyes and empty places at the table.

This is the season of all-day candles 
and mixed greens.

This is the season of quietness,
long conversations, 
mad dashes.
This is the season to plan late winter and spring adventures 
to see new places and old faces.
This is the season to love the joy of those I love.

This is the season to live slow on the inside, 
leaning into all the sadness and joy.

 This is the season of nesting on the couch 
with Newsroom on continuous loop
 (with episodes of Sister Wives thrown in so I don’t get too comfortable on my high horse), 
hot chamomile tea, 
and reading one last chapter in bed...
before rising again in the dark,
to begin again.

This is my season of gratitude, 
thick and deep,
for all that is, 
for all that has been
and for all that will be.