Saturday, May 12, 2012


I can feel it, a few of the symptoms slowly peaking their way back.  The slight itching above my right lip when I eat, a faint rash hovering below the surface on my neck, the necessity to spend most of the day sitting or lying in bed.  It's been an amazingly successful three weeks since I have returned from Phoenix - I have felt stronger and more stable for a longer stretch of time than I have had in close to a year.  But I am getting that itch that I know a blood treatment would be extremely helpful right now - unfortunately summer has begun in Phoenix and other pressing things are happening here at home, the combination of which would make a quick trip into the desert most likely more harmful than helpful.

The biggest challenge I am facing right now, is a good problem to have - its pacing myself.  Its the most difficult of tasks when you start feeling better - you want to catch up on everything you have missed out on - you want to seize the day in case it is all taken away from you - but I know that the best approach right now is to be mindful of my limitations and get into a rhythm that will promote my health until early fall when I will return to Phoenix.

I know my treatments are not in the scope of anything traditional but I now feel I am a walking billboard for their merits.  I have a bit of guilt in fact that more people are not blessed with the luck I have had in finding the right doctor that understands my body and its fragile nature and tipping points.  I am frustrated that UV Photophoresis isn't more accessible and studied in more depth in the United States medical schools.  Despite its amazing benefits and lack of side effects, there are very few trained physicians using this technique.  I am also grateful that I have a doctor that understands the delicate balance of how far to push and when to pull back.

Today I spent most of the day in and out of bed, however it wasn't the crushing fatigue that has plagued me in the past, it was closer to when you have pushed too far and your body is asking politely that you stop and take a deep breathe.  I watched the movie A Big Year, it didn't do well in the theaters, its about three men - Owen Wilson, Jack Black and Steve Martin - all "Birders" those that have a passion for finding species of birds, and the Big Year is the contest to see who finds the greatest number of different species.  It was one of those movies that you may not enjoy if you were in the wrong state of mind, but today - my contemplative slow paced self I found it a joy to watch.  There is such a contest in real life, and I find it so interesting when someone has a passion for something so specific.  I have never been someone so completely drawn to a specific hobby or sport - I guess my truest passion has always been my relationships - and as I have spoken about before, this illness has often robbed me of taking advantage of them in the same way I use to -

When I was lying in bed in Phoenix these two Morning Doves would come and sit on the fence outside my window almost every day around 4pm.  There was this odd comfort I found in seeing them most days, their little partnership and habitual nature - and then just the other day here back home I was welcomed back by the two male ducks and their female companion that roam between the yards in my neighborhood.  Again - the comfort of their return - and despite the storm that raged outside they stood in the middle of the empty road without a care in the world - living in the moment.  Like those Birders, this journey to reclaim my health has been all consuming - it has taken me across the country, to many many doctors, tested my patience and at times left me feeling crazy -

Tomorrow is Mother's Day and words would never do justice for the gratitude and love I have for mine.  One afternoon while we were driving back from my treatment, I was staring out the window as the desert landscape blurred my eyes.  My mind was blank, resting from the weight of pressure I carried in the necessity these treatments proved successful - the burden I carried was no longer for myself it was for my parents.  And as the world moved slowly past me I imagined what this health crisis would have looked like without the faith, patience, understanding and sacrifices my parents so freely gave.  Its not uncommon for me to recognize the winning lottery ticket I cashed in with the parents I was given, but the depth of the impact their trust and "we will do whatever it takes" determination until you are well - at that moment took my breathe away.  Never once during this journey have they doubted me, denied me, or lost faith in me - and I was overcome with a sadness for those that were not giving the most precious gift of unconditional love.  This illness takes you back to your childhood, because of the helplessness it often bestows, and I couldn't stop thinking of the children out there alone in this world, at the mercy of parents that take advantage of their power against the powerless.

I'm like a bird, I'll only fly away
I don't know where my soul is
I don't know where my home is

Nelly Furtado

There have been many times during this journey that I wanted to fly away - fly away into myself and away from everyone else - to escape myself - there have been times that I just yell - that I can't stand being who I am trapped in this body that seems determined to defy every rule - but there has never been a moment where I didn't know where my home was - and like those migrating birds - that prepare for a long uncertain journey - a journey that also defies all the rules - we make it home.

One of my favorite pieces of writing is Toni Morrison's Lecture when she accepts her Nobel Prize for Literature, and I encourage you to read it, so in closing to keep with the bird theme...

"I don't know whether the bird you are holding is dead or alive, but what I do know is that it is in your hands. It is in your hands."

This illness forces me every day to evaluate that how I cope is always in my hands.  And I am thankful that I have many around me to encourage me when I don't feel I have the strength to fly - 

My 4pm Companions

Let it Rain

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