Monday, April 15, 2013


I was in the shower this afternoon, looking down at my heroin chic arms battled and bruised.  I was thinking how I haven't hydrated well enough today and how just a bit of cleaning on Saturday landed me in bed most of Sunday.  I had looked at my calendar the evening before and realized I only have three more weeks in Phoenix and only time will tell how I leave here.  The water slowly poured down and I had one end of the shower door open so I didn't get too hot.  Tony, the air-conditioning repair man had just left and I thought about once again the kindness of strangers...and how so often I feel all alone and then there are these strangers among me every day that offer up the kindest of support.       I think perhaps at some point they are disarmed by the honesty.  As he was giving me facts and figures of how we can improve the system, I finally looked at him and said, I am sorry in my old life I could process all you are saying but right now I need to lie in bed and just give me the end of the story, I have no room for the beginning and the middle...just wrap it up to the end.  And I just gave my truth.  Before he left he told me if there is anything I needed while I am in Phoenix they always have trucks around the Valley...a light bulb changed, anything heavy lifted, but that he couldn't promise laundry or dishes.  I appreciated the humor.  It's easier for those who don't know me.  It's easier for the stranger with the illness that they just met to feel useful and offer a helping hand.  It is much more difficult for those that see it day in and day out and the tiny changes that we must claim as progress.  The tiny changes that over the course of 4 years have become big changes but they are not changes that have given a life back.  They are however changes that continue to offer hope.

This illness has become like a family member that I can vent about and write about frustrated about all I have been forced to give up;  but everyone else must be careful to point that out or I will bite.  Because it takes away my power when they point out all I have lost and many days all I see is what I have gained.  Last week as I was at the doctor I began to laugh, it's all I could do.  And I told her, look how far we have come, you are on your fourth vein, I have blood all over my hand, my one site has become swollen and I am truly laughing four years ago I would have been terrified...I have let go of the control...what an amazing gift to trust someone else so completely that when all is falling apart you know you are in capable hands.  What a gift that I have gotten to the point where instead of making people around me feel guilty about what they can do that I can only witness I am just so happy I may able to make it for a few minutes to see their joy.  What an amazing gift that thirty minutes of alone time at the Biltmore Resort with my niece was as close to perfection as I could imagine.  And the day I may be able to eat mashed potatoes again, well let's just say nothing will ever taste so good...because now everything is much more than it seems to be.  So if anyone else points out what I have given is I who feel sorry for them and I can finally believe there is much I have gained.

So back to the shower, I was looking at this bruised body and feeling more like a bruised spirit and I realized there is such a fine line between being cowardly and courageous.  And decided once again, today, like the 7 plus years since this began the only one that could choose which way it would go would be me.  So I dried my eyes, grabbed my towel and decided now if any was time for stoicism.  And before I left I turned on the TV to see just that...horrifying acts of cowardliness and acts of courage on a much grander scale.  We all have our battles, some are just a bit more quiet than others.  We all fight our own 26.2, the tragedy is those believing their courage is defined by destroying the spirit of others.

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