"What lies behind us and what lies before us are small
matters, compared with what lies within us." -Ralph Waldo Emerson
I think
my iPod is sending me subliminal messages.
Today I
heard a song that took me back to being a kid. It was a song that my childhood
friend and I would play on the jukebox at the local pizzeria. I don’t know how
often exactly but it feels like we would walk there once a week with our
mothers, get a slice, and then get to play a song each. The rule was we
couldn’t leave until we each heard our song. If someone was already playing
one, we had to wait which felt like an eternity back then at four or five years
old. If I close my eyes now I can still see what the floor looked like, what it
smelled like in there, even our favorite table. I imagine myself wearing pig
tails in my hair with those enormous plastic bubble rubber bands tied tightly.
I remember calm, happy, easier times. It brings a sense of joy remembering
those days. Thinking of those little girls we were and all the things we did
together always brings a smile to my face.
Our
jukebox songs were always the same. I would always play Madonna’s “Material
Girl” and my childhood best friend would always play Huey Lewis and the News’s
“The Power of Love.”
As we
grew older, my friend moved away and although we kept in touch life changes you
and gets in the way. It is not intentional but it happens even with the best of
intentions.
Since I
have turned thirty this past December, I have found myself on an incredible
journey. I would have normally thought and hoped it would be traveling some
place exotic but instead it has been on a path towards healing and wellness. I
have been suffering for many years with chronic migraines and since November I
have been in my own personal hell.
I have
been hospitalized, drugged within an inch of my life, and even on some very low
days prayed that it was an aneurysm that would just burst so I could be out of
pain already. I have gotten very sick on vacations I took last year to the
point I had become afraid to travel, even with family, and that was my breaking
point. Travel and photography are what I live for and if I can’t do that, even
when I push myself to my limits, I just didn’t see the point.
But my
story has a happy ending. Well it is not an ending exactly. It is more like an
intermission. Act I is over, I hope.
I have
really amazing friends. They understand when I can’t pick up phone, when I
don’t answer emails, and that plans aren’t official until they see me in front
of their face. They support me, distract me, and love me unconditionally. I can
vent and complain. They know when I have a doctor’s appointment and are at the
ready to hear how my medication has changed. I look up to and turn to them as
my life lines. They deal with my triggers and what I have to do to avoid them.
They know that when they are with me they will be freezing with the air
conditioning on no matter the temperature outside and likely be in the dark to
avoid bright lights.
But the
biggest surprise and gift from a friend was the reemergence of the
aforementioned childhood buddy. It all started with a beautiful, really
beautiful birthday email. It was so lovely and touching I had to photograph it
and put it in the book I am making myself to commemorate this year. Then we
starting writing back and forth. That’s when the real surprises came. The
letters would come and say the things I needed to hear. I couldn’t figure out
how she knew how to help me. But she did. It is amazing how an email from out
of the blue can lift your spirits, change your mood, and brighten your day. I
believe that “Johanna’s daughter” is largely responsible for getting me out of
the depression that came with all that pain. She always told me how proud she
was of me for having the courage to forge ahead and take on whatever I needed
to get well. It was like whenever
I read her emails I felt stronger and less alone. I believed what she said
because of the obvious love and sincerity in her words. She has shown me the
real power of love.
It has
been a wonderful journey as this year of being thirty I am doing a complete
three hundred and sixty degree turn and returning to the people and things I
loved as a child. I guess that was the purest time of my life. It is true if
you love something and set it free and it returns it was meant to be.
I also
have a strong family support system. Right now I have three cousins
particularly in mind. The first
two I am thinking of are my first cousins and are really more like sisters.
They are my “Jerrys” and will know what I mean. They are constant cheerleaders
checking in, sending cards, text messages, anything to lend a hand or show some
love.
But the
next cousin I am thinking of (yes I am Italian and it is like that movie “My
Big Fat Greek Wedding”, I have one hundred first cousins) did something last
weekend that deserves an honorable mention. This cousin is the mother of my
godsister and always checks in to see how I am, how my doctor appointments go,
and in general makes me smile. However last weekend she did something
remarkable and I am not sure she is even aware of it. Last Saturday I got an
email from her, very casual and loving, but at the end she said “hope you have
a migraine free weekend.” It reduced me to tears. It still does. I don’t think
she could ever appreciate what those seven words meant to me. For someone who
is not in my everyday life, and doesn’t spend her time reading migraine
literature on the internet, those words came from her heart. They were the
words a migraine sufferer dreams of hearing because it is what we are always
silently praying for. It is what we work day in and day out on. Those words
encouraged me, breathed new life into me, and gave me the perfect way to start
to my day. It was more than I could ask for. And it deserves acknowledgement.
In order
to avoid a migraine there is much work to be done. The progress that I have
made is in no short way just luck. It is in large part due to the work done by
my brilliant doctor at Montefiore Medical Center in the Bronx, New York and by
myself. It is a full time job and I wish I got paid for it. I take no less than
fifteen pills on an average day just to attempt to prevent a migraine. I take more
when I get one and attempt to avoid going to the hospital from pain that I
can’t break. That is the worst case scenario because that puts me at risk for a
stroke among other things. I also have to adhere to a strict diet and haven’t
had a sip of alcohol in almost two years. I have to do my best to avoid the
things that I know trigger my migraines which for me are humidity, rain,
cigarette smoke, the smell of alcohol and chemicals, cinnamon, spices, not
eating, not sleeping, sleeping too much, reading too much, etc. These change on a regular basis and to keep up I keep a detailed log for my doctor to go through.
It is a process and although I have made progress I am nowhere near done and
have to accept I may never be. But I am one of the lucky ones.
On a recent
doctor’s appointment I expressed that I have finally been able to read at my
leisure for the first time in nine months. I have been able to drive somewhat,
although I try never to do it alone because of the medication I am on. I am
writing again. These may be things you take for granted but they reduced my
doctors to tears because now the life was back in my eyes. Because, now I had
more of a life than I have had in quite a while. Even though I am thirty I have
to accept that my head rules the roost and when it is done and tired I have to
say no. No I can’t do happy hour, no I can’t go out both Saturday and Sunday,
no I can’t get home that late. It is a sacrifice but it is what I have to do to
survive. It is not a choice. I think people who do not understand the situation
forget. They forget because they don’t see it. You’re aren’t bleeding or
limping. Unless I am crying (which only happens once I have had it and panic)
you look fine, you don’t look sick. The pain isn’t obvious and that’s when you
don’t get the sympathy or support you need. But that is what is most important
for migraine patients. Sometimes encouragement and love is all we have to get
us through. This is why I read somewhere that for migraine sufferers the
suicide rate in one in four people. Pain is real. But so is love. And it’s
amazing how little it takes to feel that and how it changes your outlook on
everything.
This is
the reason I decided to take this moment to share these feelings and hopefully
teach someone else how to lend a hand to someone they know who is in pain. It
is migraine awareness month and an appropriate time.
So, Huey
to answer your question yes I do know the power of love and it is a magical
thing.
As usual I'm speechless. As a mom I think I'm there for you. But some days I feel helpless, especially on those bad pain days. I pray that one day my girl will feel like she use to and that I have the strength you need to get you thru it. So on those days when you think I might not be there for you, always know that I am and always will be. xoxo
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