Maggie Winston: Choices

I could think about and write about Maggie Winston using thoughts and words like tragic, difficult, challenge, sad, pain.  All of those thoughts are so very real.  Maggie got TM just a few years ago.  She became totally paralyzed from the neck down and ventilator dependent on her twin son’s first birthdays.  Maggie lives in Kenai, Alaska, a small town of 5,000 people about an hour drive from Anchorage.  Maggie had a serious fight for her life in those months following her attack.  And her life has been filled with enormous and difficult challenges since her attack.  She was impacted high on the cord and suffered all the horrible symptoms that readers of this journal know all too well.  Maggie also has suffered with unrelenting nausea from the damage done to her brain stem.  She has been able to get off of the vent but her breathing is impacted and she is prone to bouts of pneumonia.  And she lives in a small town where there is snow on the ground for most of the year and daylight during the two weeks of spring and summer. 

Everything about this young 20-something’s life changed in an instant; her physical relationship with her children, her ability to work, her family relationships, her friendships, her recreation, her social life, everything.  Or was it really everything?

When I think of Maggie, I most definitely don’t think tragic, sad, pain.  The essence of this human being is one of the most vibrant and positive spirits I have ever met in my life.  I would never discount her struggles or the suffering that she experiences from all of her difficulties.  She has plenty of struggles and suffering.  How could a human not have those experiences under these circumstances?  But that is not who Maggie is.  She makes choices for herself.  She must make these choices for herself many different times during her day.  This is one really amazing and wonderful human being.

I met Maggie in a small plane going from Charlotte to Greensboro, North Carolina.  We were all on the way to Victory Junction Gang Camp for the teen and young adult retreat weekend.  This was the third leg of a two day plane flight from Alaska to North Carolina.  Maggie was carried onto the plane with no jet ramp and placed into her seat during a driving rain storm.  Her beautiful blue and black hair was dripping wet; she was wet from head to toe.   And laughing and smiling.  And from that moment, we made a connection with Maggie that is special in a way that is difficult to describe in words.

Maggie reminds us so much of our children.  She is so full of life and such a character.  I once called Maggie and she sheepishly responded to one of my gazillion “parental” questions that she had lost a cap that allowed her to take nourishment through her feeding tube, and hadn’t done anything to replace it for two weeks.  After telling her that I expected her to call the doctor when we hung up the phone and that I would be calling in a couple of days to check to see if it had been replaced, we both laughed heartily about her predicament and her reaction to it.  It reminded me of the time I found our son, David’s, retainer under the couch. 

I talk to Maggie often.  I talk to Maggie often because I care about her, I am concerned about her, I want to check in on her, and I want to be sure she hasn’t lost any important pieces of her equipment.  And I speak with her often because I love Maggie.  If she lived in Columbus, she would be the best of friends with Aaron, Hanni, David and Kat.  They have so much in common.  Our children would love Maggie. 

We talk about many serious subjects; Maggie has serious stuff going on with her.  But we always laugh a lot and I always hang up the phone with a smile on my face and in my heart.  Maggie is the most incredibly positive spirit.  Nothing moves on the outside, but the complexity of the emotional and spiritual movement on the inside of this human being is something very special and unique.  We all have great hope that Dr. Kerr and his colleagues will find the cures for these horrible diseases.  If we could bottle the essence of Maggie, we might be able to find the cure for the ravages of the human spirit.  I wish I understood how this worked, because if we understood it, we could repair so much human suffering.  What I have learned from people like Maggie and Jim Lubin is that human beings can suffer horrible and difficult things in their lives – even permanent things – and still hold onto the most positive part of who they are, how they see themselves, how they feel about themselves, how they relate to others.  I don’t understand how they do this.  I don’t understand why some people find a way to do this and some cannot.  As I answer the phone every day and talk to people who are suffering mightily from these horrible experiences, this remains the greatest mystery for me.

Maggie wrote a wonderful poem.  It is all Maggie.  I asked her if I could share it with the TMA community and she consented.  Thank you, Maggie.  You are in my thoughts and heart every single day; and you never fail to bring a smile to my face and in my heart!

CHOICES
what is the most beautiful part of being alive?
we were brought to this world with a powerful gift
so powerful is this gift, that when utilized...
the universe is a blank canvas to create what you will
every word uttered from your tongue
every sound heard by your ears
every sight your eyes have seen
every single breath you’ve taken
every experience brought to your existence...
has made you exactly as you are
whether you spoke words that were hurtful or complimentary
whether your ears heard wonderful music or obnoxious clatter
whether your eyes saw beauty or horror
whether your breath came with ease or with difficulty
whether your experience was pleasant or painful...
it all brought you to this moment...now...here.
now i'll ask you my friends
look at yourselves...as you are now...really look
look at yourselves in the mirror
close your eyes and look inside yourselves
look at and really feel every single aspect of your lives
physically
mentally
spiritually
do you like what you see?
do you like what you feel?
to those of you who said no
to those of you who don't know
to those of you who can't even take a moment to look...
to really feel what’s inside and all around you
to those of you who desire something better
CHOOSE IT
make the CHOICE now to CHOOSE complimentary words
and you'll find yourself complimented
CHOOSE to hear wonderful music in all sounds
and you'll find your life to be musical...even in silence
CHOOSE to see beauty...even in horror
and you'll find yourself surrounded by beauty
CHOOSE to take a healthy breath with ease
and you'll breathe without difficulty
CHOOSE the experiences that bring you never ending pleasure
and you’ll find yourself in a painless existence
the most beautiful part about being alive is CHOICES
the powerful gift we were given is the ability to CHOOSE
we were brought to this world with free will...it flows in our veins
it was our very first birthday gift and our birth-right
so at times when you find yourself to be anything other than abundant
abundant in all things that bring you bliss
abundant in every way life can possibly offer to you...
CHOOSE ABUNDANCE
follow your bliss and it will take you to that blank canvas
so...what marvelous experiences will you create?
the universe awaits...