It Ain't Easy...

So, there I was yesterday, standing in the California Pizza Kitchen area of the Charlotte, NC airport, on my way back to California from a week in West Palm Beach, FL, tears running unabashedly down my face as David Gray sang poignantly over the speaker, "It's Not Easy To Be Me".  I know the song well.  For me, Andrew immortalized it in a piece which he choreographed several years ago, called "Superman".  God knows how many times I've looked at the DVD of him performing it, out of costume, in a studio in Memphis.  And every time I end up in tears.  

I can't stand to fly,

I'm not that naive;

I'm just out to find

The better part of me.

I'm more than a bird...I'm more than a plane,

More than some pretty face beside a train:

It's not easy to be me.

I wish that I could cry, 

Fall upon my knees,

Find a way to lie

'bout a home I'll never see.

It may sound absurd...but don't be naive:

Even heroes have the right to bleed.

I may be disturbed...but won't you concede

Even heroes have the right to dream.

It's not easy to be me.

Up, up and away...away from me.

Well it's all right...You can all sleep sound tonight.

I'm not crazy...or anything...

I can't stand to fly,

I'm not that naive.

Men weren't meant to ride

With clouds between their knees.

I'm only a man in a silly red sheet

Digging for kryptonite on this one way street;

Only a man in a funny red sheet, 

Looking for special things inside of me,

inside of me....inside of me...(x 2)

I'm only a man in a funny red sheet,

I'm only a man looking for a dream.

I'm only a man in a funny red sheet.

It's not easy...wu...hoo...hoo...

It's not easy to be me....

The lyrics speak a lot about this complex "baby" kid of mine.  For the second time in almost ten years, Andrew is lying in a hospital on a respirator, while I and his family and friends have to look on, unable to change the reality which confronts us.  For me, it was quite different this time because the New Year of 2009 almost rang in without Andrew.  It was that close on New Year's Eve as he nearly went into cardiac arrest.  I hope I'll never ever again have to face the responsibility which Andrew had entrusted to me: essentially of playing God and deciding whether or not he was to continue living.  Mercifully, through the haze of medication and all the hell that had broken loose around him, he drew from his immense inner strength and gave us the answer -- on a notepad -- "I want to live".  And so far, he's managed to do just that.

A series of crises have challenged Andrew since he was stricken again on the night and early morning of Dec. 17-18 with a recurrence of Bickerstaff's brainstem encephalitis.  It's a rare and nasty disease which leads you up and down a yo-yo ride of hopeful progress, then discouraging setback -- often within the same day.  Add to that, this time, a staph infection which developed early on in the course of administering the plasmapheresis treatment, the events which finally led to his being intubated,  and then the collapse of his left lung on Thursday, it was like a comedy of the absurd.  Thankfully, the lung expanded immediately with the insertion of the tube, and his breathing has improved since then.  I can't praise highly enough the care given by the SICU staff, once he got there.  They have been terrific.  Andrew has managed, most days, to communicate with them and us by notepad, exhibiting his characteristic sense of humor, timely irreverence, bossiness, and his own expansive humanity and caring for the needs of others.  

Just as last time, the plasmapheresis treatments (essentially, exchange of the blood platelets), of which he's had 11, by my count (each taking about 1 1/2 hrs.), have been key to his recovery.  Last week he was unable to move his legs; this week he's moved them, with a certain amount of strength, though he'll still undoubtedly need a lot of physical therapy in the future.  His breathing is what concerns me: how much it has been affected, both by the condition itself as well as the necessary sedative medication, no one knows.  But generally this past week his spirits were pretty good.  Understandably, he has an occasional "emotional" or "down" day.  We've communicated to him how many of his family, friends and acquaintances are pulling for him, praying for him, etc., and I can assure you that he appreciates it immensely.

Aside from medical considerations, Andrew’s situation is likewise challenging.  Andrew had completed his work with Ballet Florida in the fall, having raised some $800,000 for them, and turned the sights of his prodction company, AAP, to a new project on Anne Frank.  He and his longtime friend and business associate formulated a detailed and workable plan, did considerable work all over the country generating interest and support for it, seeking financial backing, etc.  Unfortunately, at that point sufficient funding hadn't come through as yet.  And, with his illness, the project has been put on hold.  To say that they have been living "on a shoestring" would be an understatement.  He also has no medical insurance; as far as we know, some emergency insurance through the County and Medicaid is absorbing the cost so far.  His car has been repossessed and the house he and Todd have been renting could possibly be leased out to someone else at some point.  Nevertheless, Andrew has taught me that "to live one day at a time" isn't just a catchy saying.  We've seen the possible emerge from the seemingly impossible many times just during the past week together.   

In West Palm Beach, Todd and "Support Team 2" have mobilized to look after Andrew and keep our family informed.  There aren't words enough express how very much Andrew’s family and close friends appreciate all the continued caring, support, and love.  As David Gray's song says, we're all of us running around in our "silly red sheets", looking for dreams and for the special things inside each of us.  And they're there: believe me, I've seen them over and over, and I've seen how willing people are, nearby and far away, to share them.  If we can together continue doing that, in the words of the great 14th century woman, Julian of Norwich, "all shall be well"!