Friday, May 18, 2012

The High Cost of Normalcy

While many strive to live extraordinary lives, my current goal is to have one that is "normal" where I am not constantly haunted by the specter of migraines.  I have spent the majority of time over the last few years living in the dark and quiet of my home with my rescue medications close by, just trying to make it from moment to moment without unbearable pain.

However, yesterday I opted to "act as if" I were indeed normal.  My family had invited me to go out to dinner to celebrate my birthday.  Having missed more occasions and outings with friends and family than I can even begin to count over the last few  years, I decided that I was going to go and enjoy myself - to be as normal as possible.  Although I went armed with my sunglasses, earplugs, and rescue medication, we spent the gorgeous Spring evening sitting on the patio of one of my favorite restaurants.  I reveled in the opportunity to sit admist the laugher and conversation - to be a part of something which I had so frequently missed.  

While I did have a migraine, things went pretty well during the first half of the dinner (once my brother got the manager to turn off the music that seemed to blare above our heads).  During the second half of the dinner, my head began to throb a little more, the nausea began to grow, and the light show began to burst in my eyes.  Yet still, I went on doing the best I could to not let anyone know how much I was suffering and still enjoy the illusion of normalcy.

Later that night, however, as I paced the house pulling my hair in some vain attempt to stop the pain, I questioned whether or not my brief sojourn into normalcy had been worth it.  I watched the clock as it moved from 10 p.m. to 3 a.m. to 9 a.m. and fought back tears at the onslaught of pain.  All the while, an inner battle raged.  I swore to myself that I had learned my lesson and that I would never venture out of my cave of dark and silence tempting the fates of migraine again.  I bargained with the migraine beast, promising that I would never try to pretend to be normal if he would just allow me some measure of relief.  However, not even a modicum of relief came until late until the next day.  

Now as I nurse the exhaustion of the battle, as well as a level "6" migraine (blessed relief compared to yesterday), I question the high cost of normalcy.  Was it worth going out and being with my family if the result was the hellish night I had just spent?  I have been mulling over this question most of the day.  It has been as if two spirits have perched upon my shoulders arguing back and forth, one which says "you can never be normal, and if you try, I will make you suffer unbearably." To this one, I respond cowering in fear, promising that if my migraines can just stay between a 4 and a 6 that I will never, ever do anything to anger the migraine beast again.  

However, the other spirit, if you will, does not scream at me and threaten me with dire consequences, but instead is just a quiet conviction that life is worth enjoying even if it means enduring some nights like last night.  After all, pain is not an optional part of my life right now; it is an inevitability.  Pain will exist whether I hide in the dark cave of my home or whether I venture out into the world of the "normals."  I can spend all my efforts protecting myself, or I can throw caution to the wind at times and celebrate doing some "normal" things which for me are extraordinary. 

It is a matter of balance for I cannot habitually live as I did last night as I walked through such unbearable pain.  Yet, on the other hand, I cannot habitually live in fear of pain to the degree that my life knows no joy.  It is not easy to be asked to choose between having a brief moment of normalcy and keeping the edge off of pain.  However, I think that when I look back on my life, it will be those moments of laughter and friendship and family that I will remember most.  I doubt that I will be haunted at my deathbed by regrets that I endured pain in order to embrace joy.  

There is a beautiful quote that says "Life is not about the breaths we take, but about the moments that take our breath away." For me, life is not about the moments of excruciating pain, but about the moments of breathtaking joy - the joy that comes from seeing the smiles and hearing the laughter of people I love and of looking at these beloved faces and having my heart swell with thankfulness for the blessings I have.  I am not at a place in my life where I take any of these opportunities for granted as I know that they each bear a cost.  However, I think that paying the cost of a night like last night may well be worth that one moment on the patio when I felt the breeze on my face, heard the birds singing, laughed along with my family and just enjoyed being me.  

Yes, I will weigh the pros and cons carefully before throwing caution to the wind; however, I hope and pray that I may be brave enough to endure some more nights like last night so that I may enjoy some more times like yesterday evening.  I recently read "Perhaps strength doesn't reside in never being broken, but in the courage to grow strong in the broken places."  Yes, last night I was broken, but I gained strength from the joy I received in my brief encounter with normalcy.  

Psalm 121

I lift up my eyes to the mountains—
    where does my help come from?
 My help comes from the Lord,
    the Maker of heaven and earth.
 He will not let your foot slip—
    he who watches over you will not slumber;
 indeed, he who watches over Israel
    will neither slumber nor sleep.
The Lord watches over you—
    the Lord is your shade at your right hand;
the sun will not harm you by day,
    nor the moon by night.
 The Lord will keep you from all harm 
    he will watch over your life;
 the Lord will watch over your coming and going
    both now and forevermore.

Saturday, May 12, 2012

When Life Sucks Make Suckers!

Let me begin by saying that I really don't like the term "life sucks."  However, since it is used all the time, I thought I'd give you my take on it.  In this case, my purple sucker and ribbon represent migraine awareness and the reason migraine awareness is important to me.  I'd love to say that I have some grand aspirations of changing the healthcare system and the ways doctors interact with patients, as well as getting money and attention for migraine disease research.  These things are important to me and I really do wish I could do those things, but when I think about why I spend time writing about migraines and posting information about migraines, I find that my purpose is often much different.  

For me, awareness is about giving people hope - letting people who suffer from migraines and other headache disorders know that they don't have to live in despair or travel their road alone.  Yes, having migraines does suck, but who doesn't have something in their life that sucks? I have a strong belief that when we come together as a community of migraineurs and advocates that we can literally change that "suckiness"  into something can have positive ramifications in our lives, in the world and in the future.

Like a sucker which is sweet and long lasting, my involvement in migraine awareness has allowed me to get to know some people who I consider to be dear, life long friends.  Their battle with migraine disease hurts me to watch, but they are my cheerleaders. I gain inspiration from them to keep on going in the face of pain, loneliness, and frustration.   This has been life-changing for me and has been the result of other migraine advocates who have introduced me to the migraine community and have cared enough to reach out to me. Without this influence in my life five years ago when I first became chronic, I honestly don't know how I would have survived.  

Every time I post something about migraines on Facebook or in my blog, it is with the hope that someone who feels as lost as I did five years ago will see that they are not alone.  It is my desire that in building these relationships that individuals will become empowered to find the best medical care they can, but also that they will see hope in the midst of a very, very difficult situation.  

I don't post about migraines because I feel like the world owes me something or that they should understand me.  I write about it because I find personal strength in knowing that every time something is written about migraines in a positive, hopeful and educational manner that somebody's life might be touched and changed for the better.  That person may be a migraine sufferer, a friend, a family member or a member of the medical community.  Regardless, I kind of see migraine advocacy as a rainbow of purple where each link in that rainbow is the influence and caring one person gives to the next.  By joining forces, we become that purple rainbow that can be see by others - migraineurs and non-migraineurs alike.  They see it and hopefully gain strength, inspiration and hope from it.  Hopefully, they look upon it and are inspired to make a difference, to learn more, and to add their voice to the choir of migraine advocates.

There are some people who are destined to make a grand difference in the world and the system regarding migraines, but I believe we as migraineurs all have the ability to become advocates and make a difference in someone's life.  My personal philosophy is that we do this best through support, encouragement and education of the public that de-victimizes us and gives us power over our own healthcare, our lives and our emotions.  That positive approach seems to be contagious to me.  It draws others into it and makes them want to be a part of it, and they then become beacons of hope who pass it on to someone else.  

Basically, my goal as an advocate is to become a candy maker - a sucker expert extraordinare!  I hope that my advocacy might in some way make at least one person's life a little bit sweeter,  a little bit more hopeful, and a little bit more positive.

Tuesday, May 1, 2012

Who Am I - When Migraine Challenges My Own Identity

Who am I?  I have really been struggling with this for the last several months.  Having chronic migraines has "deleted" some of the definition I enjoyed, and I am having trouble filling the void with new definitions.  Prior to this, it was an easy question.

- I was a respected mental health therapist and professor.
        And now I am not.

- I was a person who loved laughter and being around people.
        And now it is difficult to do so.

- I was a person who prided myself on being reliable and committed.
        And now, I frequently can't be relied upon.

- I was an independent woman.
        And now, I rely on others for transportation and for financial support, among other things.

- I was a deeply involved family member who loved to be there for my family in fun times and in difficult times.
        And now, I'm generally not involved. I've missed so many special occasions and haven't been there at times when people needed me or when I wanted to be there.

- I was a loyal friend who loved being able to do things for others.
        And now, I am always the recipient.

- I was an active and involved person who enjoyed being with others.
       And now, I am frequently lonely.

- My days had purpose and meaning.  I felt like I contributed something to the world through my work, through my friendships, through my activities.
        And now, I often grapple with the question of what my purpose is.

As I think about this, I think having chronic migraines may be helping me to learn that I found my identity in the wrong things - not that the things that defined me were bad - they just weren't all there is.  The very fact that I live and breathe and exist today has to count for something - there has to be some reason for my existence.  

When I stop and really think about it, I hear the Lord telling me that my identity is in being His beloved daughter; that my purpose is to glorify Him; that my goal is to shine a light in the darkness.  

I once heard someone say that God created us as human beings not human doers.  Being is hard.  Being content while just being is even harder.  The world tells us that we are someone because of what we do - our job, our involvement with friends and family, our independence, our achievements, and our activities.  When those things are taken away for whatever reason, we are left with the question of "who are we really?"  Is being me enough? Can I find purpose in life in just being who I am once all the activities and accolades are stripped away?

I'm not sure what the answer is to that question if I rely on my feelings.  So instead, I have to remind myself over and over again of the truth that is constantly being whispered to me - "You are mine, Beloved.  I hold your future and your past.  You are beautifully and wonderfully made, and I rejoice in you because of who you are and not because of what you do."

So my goal is to listen to the words of truth more and to my feelings less  (without disregarding my feelings)- to let the truth define me even when I am feeling lost - to take that question of who I am to my Creator and to try to stop basing my beliefs about myself upon what I do.  This is not going to be an easy or quick task.  It is going to have to be purposeful.  The one thing I do know, however, is that life is a process.  I am always learning.  I am always growing.  I am always changing.  AND it will be for good, to give me a future and a hope.