First let me start
with an apology and an update. I know my
last blog was dark. I was in a dark
place. I feel that it’s important to document this journey accurately. Sometimes
things are depressing. Other times they are sweetened by distraction. My blog is a therapeutic journey. I am humbled that people read it. I feel honored that many of my friends have
given so generously of themselves– some emotionally, others financially.
Here is the latest
news. First, I have centered
myself. I have accepted that it is 99% likely that there is no other alternative then this surgery. We have set a
date of September 22nd. On August 5th
and 6th, I meet with two different neurosurgeons, both of whom have
never seen my case. These are my second and
third opinions. Then on August 11th,
I meet again with Dr. R, the neurosurgeon I was first referred to back in April. This is a 3-month follow-up to my original
appointment. Later that day, I meet with
the two neurosurgeons that will be performing my surgery. At that point, I will present any additional
information I was given at my other appointments, ask questions and make a
major decision. There is a possibility that
if my symptoms seem extreme enough, I may move up the date.
To give everyone an
idea of what I’m working with here. This
is a normal MRI.
See here the reason for concern? Whatever that is, it’s NOT supposed to be
there. Something happened Monday night
as I looked at this image. I accepted that
this is serious. I cried about it,
because that’s what I do. Now comes the
part where I have to start summoning up my courage
I have learned that
the sense of urgency comes from the position of the mass on my spinal cord.
Although I am functioning, I am experiencing a constant numbness in my left
hand. The longer I wait to have the
surgery, the more likely it is that I will have permanent nerve damage. Now, I question waiting until September. I thought I was doing the right thing by
using the extra time to get things in order.
But now I worry that the extra time may actually do more harm than
good.
My mom will be coming
down to help take care of me. My dear
friend Jeff, a pilot with Jet Blue, is helping us out by getting a super
inexpensive flight for my mom. She hates
to fly, so her desire to get on a plane to be there for me is not unrecognized.
I
feel blessed that I have amazing friends that are concerned about my well
being. I constantly try to remind myself that I am strong. I can deal with pain and discomfort. I will be surrounded by loved ones.
I will be okay. But to say that I am not beyond scared would
be a lie. I’m terrified. My biggest fear is not the surgery or the recovery,
but rather something going wrong and never being able to dance again. I danced
before I could walk. Dancing of any kind
brings me incredible joy. So the thought that there is a remote possibility
that something could prevent me from raging at a show like a complete idiot
scares me. Being in a crowd of at a show
and feeling that surge and rush…I’m getting a hold of myself here. I know that some people may think that of all
the things to be scared of that not being able to dance again seems oddly
childish. But let me explain.
I had originally
written an entirely different blog. And then something crazy happened the
other night. Someone I barely know, a former patron from the restaurant
where I work, decided he knows me better than anyone else and decided to give
me a lecture about my lifestyle. I had innocently posted on Facebook about
making rice krispie treats and taking the evening to enjoy the star wars
trilogy before enjoying another Phish show on “couch tour”.
Somehow, from that
simple post on Facebook, he assessed that I was going to be spending my evening
using copious amounts of illegal drugs and smoking pot. He reminded me that I
was very sick and that people weren't going to want to help me if I wasn't doing anything to make my situation better. I was also instructed to grow
up. According to this gentleman, my lifestyle was going to discouraged
people from wanting to help me because he knew that I would be spending the
money on drugs and pot. Posting about concerts and music showed that my priorities
were in the wrong place.
At first, I was
upset. Who the hell does this guy think he is? He is making assumptions
about my lifestyle because he thinks that he knows who I am. I listen to
Phish and go to music festivals. My Facebook posts are almost always about
music. I changed my name to Lucy Everyday which is clearly (according to him) a
childish drug reference. It has nothing to do with an affectionate nickname
given to me and a personal mantra to stay relaxed and calm. Clearly, my name change and post were a cry
for help in his eyes.
Then I started to
think that maybe he had a highly misguided point. First rule of customer
service – perception is reality. Those who know me well also know that
music has played a huge role in my life from career to personal enjoyment to
creative outlet to lifesaver. I don’t understand the connection between going
to concerts and shows and the requirement to grow up. Music is a
necessity to my life. Anyone that has known me longer than two seconds
knows how very important music is to me. Music has saved my life on more
than one occasion. I find that I fit in best with groups of people based
on musical loves. My best friends and I share a bond over music.
Some people have their job or religion or athletics or education or family
life. I have music. Take music out of my life and you would have a
shell of a person. It is my soul, my heart and my spirit.
During this very rough
time, I have taken solace in the music of bands like Phish, Twiddle and
Jimkata. Their music is not about drugs or smoking pot. Well, maybe
some times for some people it is. In my world, musical is a spiritual
experience. It is what keeps me grounded to a higher power. When I
listen to music with an amazing message that makes me feel great or music that
makes me just HAVE to dance, I feel certain that it’s being given to me from
somewhere else. The music is my gift. It is my reminder that I am a
small part of a larger universe. I have recently discovered that my
journey to enlightenment doesn't have to be the same as anyone else. Because it’s my journey and that what makes
it real.
I don’t expect
everyone to get it. But what I ask of my friends and family is to kindly
respect it. Yes, I may post about wanting to attend shows that are happening
five weeks after my procedure. If I’m cleared by my doctor to attend, I
will be there. If I’m not cleared, I will sit at home trying to convince
David to go. He’s already been instructed to put his foot down. I
know I’m going to test my limits. I will be desperate to feel that light;
that connection to the beautiful music that is created by these talented musicians.
I will be most desperate to see Twiddle. They play the Town Ballroom on Oct
22. My surgery is set for September 22. October 22 is my
goal. I will do everything over those 30 days to ensure that I can be
there for these shows.
Telling someone to grow
up because music is a culturally important part of their life is wrong.
What is the difference between an avid music fan and an avid golfer or an avid
church-goer? There isn't one. Something magical happens on the course or
in that church that makes them feel centered and connected. That’s what
live music does for me. It’s about seeing my friends and my
phamily. It’s about the shared hugs and smiles. It’s about sharing
that moment of joy when you hear those familiar chords that make you just want
to jump up and down like Tom Cruise on Oprah’s couch. I hope that
everyone has that in their life; a healthy source of light, love and
encouragement. I am so lucky that I have found that. As long as your
desire to wake up in the morning has a healthy, loving source and your actions
don’t hurt anyone, why does it matter where it comes from?
And the answer is that
it doesn’t matter. Because the people
that love me and support me get it. They get me. They understand my bigger
picture. I may grow older with age, but
I will never stop being that eight year-old girl dancing in her bedroom to her
favorite songs. It’s what makes me feel
alive. And even though that may seen
childish during such a serious time, it's what encourages me to move
forward. I will see those shows in October. I will go on at least a portion of Phish tour
next summer. Why? Because these are my
goals. These are my milestones. Because when I want something, I will achieve
it. And in the end those desires to continue to feel that light, love and
energy is why I will walk away from this delicate procedure with no problems
and no complications. Because in my world, music
heals.
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