Dear 2012

Dear 2012,

I have been trying to think of the Scripture that best sums up this year.  While I am tempted to use John 11:35 ("Jesus Wept") because of how frequently I wept over Migraines, struggles, loss and the other difficult realities of life, I am convinced that the better verse to sum up my year is found in Romans 5: 1-4 (The Message)

     "We throw open our doors to God and discover at the same moment that he has already thrown open his door to us. We find ourselves standing where we always hoped we might stand—out in the wide open spaces of God’s grace and glory, standing tall and shouting our praise.

     We continue to shout our praise even when we’re hemmed in with troubles, because we know how troubles can develop passionate patience in us, and how that patience in turn forges the tempered steel of virtue, keeping us alert for whatever God will do next. In alert expectancy such as this, we’re never left feeling shortchanged. Quite the contrary—we can’t round up enough containers to hold everything God generously pours into our lives through the Holy Spirit!"

Yes, while at first glance, 2012 appears to be one that was filled up with pain, I can confidently say that when I look at my year in total that it is filled with hope and joy.  Any pain that I experienced during this year, God Himself has been able to use to produce growth in me.  As the NIV says, "suffering produce(d) perseverance, perseverance, character; and character, hope. And Hope never puts us to shame, because God's love has been poured out into our hearts through the Holy Spirit, who has been given to us."

Where you would have like to have seen me write that suffering produced pain, and pain produced anxiety; and anxiety, despair, instead I can confidently say that I am grateful for each experience which has been allowed me during 2012.  It is those experiences and my ability to come through them which have taught me that there is always hope and that even the hardest things that occur in my life can bring great good.

Yes, I had unmanageable Migraines, but because of them, I have made some life long friends who I would have never met otherwise.  Because of them, I have a doctor who I trust and value.  Because of them, I have had to travel to see that doctor and have, as a result, gotten to know my dear first cousin and his family.  Because of the trials of this year, I have had the good fortune of learning that joy is something that is not dependent on my circumstances but upon my relationship with God Himself.  Because of my Migraines, I have had time to listen to beautiful music, read good books, consider the wonder of friendship, to bathe in the blessing of family, and to try to serve others who are suffering.  

Because of the trials of this year, I have re-realized the unimaginable treasure of people I love and the time I get to spend with them.  Because of this year, I know that every day is a gift. Because of this year, I can face 2013 without fear because I have seen the proof of the good that can come out of difficulty and pain.

So, 2012, thank you.  Thank you for each day and each experience.  Thank you for bringing me to 2013 where I expect to continue to fill up that container mentioned in Romans 5 with even more blessings, more hope, more victory and more certainty that God does have a good plan for me.  Will there be pain in 2013?  Yes, it's inevitable, and I don't look forward to it.  I cannot minimize the severity of some of the physical and emotional pain that I am bound to experience this year any more than I can minimize that of the past year.  

However, I survived.  

And I will continue to survive,

 and survival will be laced with gratitude and hope 

for I know that even in the most difficult circumstances,

 good can and will grow. I stand in alert expectancy - seeking what God has to reveal to me during this year.  And for that, I will give all glory and praise to Him!

Removing the Mask

Removing the Mask

This may be the most difficult blog post I have ever written due to the degree of honesty and vulnerability about which I am writing.  Even I am not sure if I will actually press the "publish" button to allow all to see my innermost thoughts.

I am a person who believes in hope and holds on to it with great tenacity.  I believe that there is a plan for my life and that it is a good plan (Jeremiah 29:11).  To the best of my ability, I focus on the positive because I believe that the way I think shapes how I feel.

However, this is not an easy task.  I am writing this for two reasons.  The first of which is that there is some catharsis in writing what I am feeling.  Secondly, it is my hope that if anyone else feels this way that they will read it and know that they are not alone.

The holidays are difficult for me.  They seem to accentuate my deepest longings and my sense of loss due to chronic pain.  They stir up a war within me and cause me to feel like I am playing emotional tug of war.  The holidays put a magnifying glass upon my feelings and make it difficult for me to not address my deepest, most hidden feelings.

I cried myself to sleep Thanksgiving night.  On the surface, I had a wonderful day of spending time with my family.  So what caused the tears?  It was the chronic struggle to survive in the midst of the fun.  I have a loud, fun and exuberant family who loves to laugh and play jokes, and I have always treasured being a part of that.  However, since I have been dealing with chronic pain from Migraines, Fibromyalgia, Spinal Radiculopathy and Chronic Fatigue Syndrome, it's all I can do just to be there.  

I struggle to keep people from knowing how badly I feel as I am being assaulted by noise, activity, lights and odors.  I feel old before my time, and I feel very alone.  Rather than sitting in the midst of the fun and participating, I sit at the table with the elderly members of the family.  I try to listen as they speak to me but am fighting the pain and the nausea to the degree that I only hear part of what they are saying and can only hope that they don't know that I am not really there.  I watch the ones in the other room who I long to spend time with and see them bonding with each other and feel invisible and unimportant.  

I struggle with my sense of identity.  None of the things that use to give me my definition of self are the same anymore.  I have few meaningful contributions to make.  I can no longer work at the job that gave me such overwhelming joy - can I even say I am a play therapist any more when there is no play in my life?  Can I say I am a mental health therapist when I sit alone in my home?  I try to keep up with my continuing education so I will not lose my licenses and certifications, but it is so difficult to attend the required in-class workshops and even harder to a pay for them.  I have no professional identity.

I'm not suppose to drive so I am dependent on people to take me places. When I do drive because I cannot get a driver, it is with fear of what might happen.  I am grateful to have some people who are willing to take me to the doctor, the grocery or the pharmacy, but my world is shrinking because I never go anywhere else and when I do, I pay for it dearly.  

My relationship with friends and family have changed to that of caregivers at best.  I feel like a burden.  With some, the relationship is but a memory.  I who use to have such a huge and vibrant world now have such a little world.  I attend church by watching webcasts because when I go into the sanctuary I cannot find a "safe" place to sit because of the perfume and the lights and because any ride I might have would be for the entire three hours of Sunday School and church which my body cannot endure.  So I have lost the fellowship of believers which filled my soul in a way I cannot describe.  

Friends sometimes still ask me to go to events.  I am afraid to say yes because I so frequently have to change my mind at the last minute because of how I am feeling.  A friend has asked me to attend a paint party which I have always wanted to do, but I cannot commit because I no longer have the finances and even if I did how could my Migraines survive the smell of paint.  And if I went and got sick who would I have to drag away from the party to take me home?  

I am utterly undependable.  I am not there for fun, but neither am I there when people need me.  There have been friends and family who are ill, lost loved ones or are hurting, and I am not there for them.  I have a friends whose babies or grandbabies are growing,  and I cannot spend time with them.  I offer to  babysit for a couple of hours and then have to cancel because of the pain.  So I who use to be in the middle of everything am in the middle of nothing!

I can't go anywhere other than medical appointments, but neither do I want people coming here.  I, who have always had such pride in keeping a clean and straight home, live in chaos because I frequently don't feel like picking up after the dogs, washing the dishes, dusting, vacuuming or going through the paperwork.  I am ashamed for people to see my home.  So the person who use to host all the get-togethers no longer does so.

Christmas is coming and frankly I am dreading it.  I try to focus on the reason for Christmas and remind myself that everything else is just fluff, but I loved the fluff.  I don't decorate for Christmas - there is no one here to see it and it's just too hard to do the work involved.  I can't go shopping because of the onslaught of stimuli, because I can't drive, and, frankly, because I can't afford it.  I actually bounced a check for the first time in 35 years.  I don't go to all the music performances and parties once again because of the stimuli and because I cannot make a steadfast commitment that I will feel well enough to go.

The things I saw as hallmarks of "me", that represented what was important in my life, were commitment, dependability, giving, friendship, serving, playing and laughter.  Where are these things now?  They are buried by pain.  How do I explain this to someone who doesn't understand?  I feel people pulling away from me and I feel myself pulling away from them.  I see the skeptical faces and hear the frustration of being asked for help once again.  I sense the skepticism about the medications I am on and why I travel six hours to see my migraine doctor.

Most of my friends and family know about my Migraines, but how do you explain something like fibromyalgia and chronic fatigue when they have difficulty understanding the impact of Migraines?  How do you not feel lazy when you sleep 14-18 hours a day?  How do you not feel slothful when you see things in your home not getting done?  How do you not feel alone and unimportant when you are so isolated by pain?  All the things for which I use to get positive affirmations are gone.

Taking away the mask is not pretty.  The sense of what is important to you and what identifies you is slipping away.  It hurts and is frightening. 

I am grateful that I am one for whom SSRI's work and that I have an outstanding and encouraging therapist.  It is not depression that I deal with - it is grief.  I experienced true grief with the heart wrenching loss of my mother, so I know that it changes things irrevocably, but also know that God can and will walk through this with me.  I am not giving up and I am not despairing - I'm just being honest.  

I am being vulnerable and transparent because I know that I have fellow sufferers who live this same existence.  Misery really doesn't love company, but knowing someone else has been where you are helps you to normalize what you are feeling. It helps you to feel not quite so alone.  It helps you to feel not quite so different.

My prayer for myself and for anyone who reads this is that we will continue to look for glimpses of hope and that somehow we will have a new and good sense of self - a new, but good, normal.  The one thing I can do is be here for those who hurt.  I may not be able to come to your side but I can pray for you and I will encourage you to the best of my ability.  We are not alone even when it feels that way.  

 "May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit." Romans 15:13  

Please Hear What I am Not Saying

Charles C. Flinn

               Don't be fooled by me.

               Don't be fooled by the face I wear

               for I wear a mask, a thousand masks,

               masks that I'm afraid to take off,

               and none of them is me.

               Pretending is an art that's second nature with me,

               but don't be fooled,

               for God's sake don't be fooled.

               I give you the impression that I'm secure,

               that all is sunny and unruffled with me, within as well

                    as without,

               that confidence is my name and coolness my game,

               that the water's calm and I'm in command

               and that I need no one,

               but don't believe me.

               My surface may seem smooth but my surface is my mask,

               ever-varying and ever-concealing.

               Beneath lies no complacence.

               Beneath lies confusion, and fear, and aloneness.

               But I hide this.  I don't want anybody to know it.

               I panic at the thought of my weakness exposed.

               That's why I frantically create a mask to hide behind,

               a nonchalant sophisticated facade,

               to help me pretend,

               to shield me from the glance that knows.

               But such a glance is precisely my salvation, my only hope,

               and I know it.

               That is, if it's followed by acceptance,

               if it's followed by love.

               It's the only thing that can liberate me from myself,

               from my own self-built prison walls,

               from the barriers I so painstakingly erect.

               It's the only thing that will assure me

               of what I can't assure myself,

               that I'm really worth something.

               But I don't tell you this.  I don't dare to, I'm afraid to.

               I'm afraid your glance will not be followed by acceptance,

               will not be followed by love.

               I'm afraid you'll think less of me,

               that you'll laugh, and your laugh would kill me.

               I'm afraid that deep-down I'm nothing

               and that you will see this and reject me.

               So I play my game, my desperate pretending game,

               with a facade of assurance without

               and a trembling child within.

               So begins the glittering but empty parade of masks,

               and my life becomes a front.

       I idly chatter to you in the suave tones of surface talk.

               I tell you everything that's really nothing,

               and nothing of what's everything,

               of what's crying within me.

               So when I'm going through my routine

               do not be fooled by what I'm saying.

               Please listen carefully and try to hear what I'm not saying,

               what I'd like to be able to say,

               what for survival I need to say,

               but what I can't say.

               I don't like hiding.

               I don't like playing superficial phony games.

               I want to stop playing them.

               I want to be genuine and spontaneous and me

               but you've got to help me.

               You've got to hold out your hand

               even when that's the last thing I seem to want.

               Only you can wipe away from my eyes

               the blank stare of the breathing dead.

               Only you can call me into aliveness.

               Each time you're kind, and gentle, and encouraging,

               each time you try to understand because you really care,

               my heart begins to grow wings--

               very small wings,

               very feeble wings,

               but wings!

               With your power to touch me into feeling

               you can breathe life into me.

               I want you to know that.

               I want you to know how important you are to me,

               how you can be a creator--an honest-to-God creator--

               of the person that is me

               if you choose to.

               You alone can break down the wall behind which I tremble,

               you alone can remove my mask,

               you alone can release me from my shadow-world of panic,

               from my lonely prison,

               if you choose to.

               Please choose to.

               Do not pass me by.

               It will not be easy for you.

               A long conviction of worthlessness builds strong walls.

               The nearer you approach to me

               the blinder I may strike back.

               It's irrational, but despite what the books say about man

               often I am irrational.

               I fight against the very thing I cry out for.

               But I am told that love is stronger than strong walls

               and in this lies my hope.

               Please try to beat down those walls

               with firm hands but with gentle hands

               for a child is very sensitive.

               Who am I, you may wonder?

               I am someone you know very well.

               For I am every man you meet

               and I am every woman you meet.

Having the Blahs

Each time I turn on my computer, I see the link to my blog - just sitting there to remind me that I need to write something.  While I feel the tug to update my blog, I'm equally compelled to just ignore it.  I guess you could say that I have a major case of the blahs.  The goal of my blog was to be encouraging and a beacon of hope, so having to write about the blahs is the last thing I want to do.

It's not that anything is wrong.  I guess it's just because everything is the same.  You who deal with chronic issues in your life (whether it be pain or not) will probably understand this.  I am generally a person of great hope and expectancy.  I have always firmly felt that things won't be like this forever, but I have to admit that sometimes the "what-if's" sneak into my mind.  At those times, the majority of my energy seems to go to just keeping the status-quo emotionally.  Frankly, I'm tired of things always being the same.

I started with a new doctor about five months ago.  Although I know that working with any doctor is a process and that finding the right medicine or treatment takes time, I have to also admit that it is easy to become discouraged.  It's just that I've seen so many doctors - each time hopeful that he/she would be the one to help me begin to resume a "normal" life or would at least be the one who holds high a beacon of hope for me, helping me to believe that things have the potential for becoming better.

Don't get me wrong - I love my new doctor.  I even found that my first round of Botox gave me about two weeks of lesser intensity in my Migraines.  However, the second round of Botox has not had the same result.  In fact, the last month has been more difficult than usual. I know it sounds twisted, but there is a sense of being like a child before Christmas when I'm going to an expert in Migraines.  I can't wait to open up the unknown that he might have for me.  The anticipation and joy are great, but they dim quickly when you find that it may be more of the same old thing - certainly a lot more waiting and trying to find a reason to hope.  

So, I honestly feel stuck.  I have friends and family who I want to be there for during their difficult times; I have friends and family I want to be with during their fun times; I have obligations I want to complete; I have a house I moved into nine months ago that is still just a big white box and has not been decorated or organized to the degree that I feel at home.  I have a car sitting in the garage that I've been told not to drive, but places that I want to go.  I have people that I want to talk with but just don't have the emotional or physical energy to do so.  

I had a good talking to myself last night about what I need to do to get out of the blahs.  I know that one of the major things that I need to do is to re-set my expectations and once again remind myself to look for the reasons to be content and happy in the here and now.  I also need to remind myself that I have a reason to trust and hope for the future rather than resigning myself to just the here and now.  Hope surrounds me, but honestly sometimes when I focus too much on how I am feeling physically, I lose sight of the hope.  

So, I have to ask myself again.  Will I still choose to focus on hope and glorify my Lord in the midst of the apathy I feel right now?  The answering is a resounding yes.  It's not because I necessarily feel that way, but because I choose to remember that I am called to look at "whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable, whatever is excellent or praiseworthy." (Philippians 4:8)

Yes, I do have a major case of the blahs, but I am trying hard to hold on to the hope I know that I have - even when it doesn't take on the shape and appearance that I would like.

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.

What Is Your Refuge in the Storm?

***This just in from the National Weather Service*** Hurricane Megrim is closing in on the shores of the Mississippi River with winds of 150 miles per hour resulting in massive destruction along the Mississippi Valley.  We had hoped to take you live to ours news anchor, Tim Witt, who was standing by at the Memphis Harbor.  Unfortunately, we have been unable to contact Tim who we last saw hanging on to a light pole as large pieces of debris from nearby homes were being swept into the river, and Tim was being buffeted by twenty foot waves.  Please join us in prayers for the safety of Tim and his crew.


Yes, I know that theoretically there are no hurricanes on the Mississippi River, or in the Memphis area; however, I have certainly been through my share of hurricanes, as I am sure many of you have regardless of where you live.  The winds of migraine have buffeted us and threatened to carry us out to sea along with the debris.  Frequently, that debris that we longingly watch as it is being washed away consists of our jobs, our financial security, our independence, friendships, and many other things we hold dear.  And like Tim Witt, we continue to hold onto the light pole hoping that our grip is strong enough to save us through this storm.


However, the bottom line is that we will never have a grip strong enough to keep us safe in Hurricane Megrim on our own.  Just like a regular hurricane, Hurricane Megrim comes with more than just rain - the accompanying symptoms of the storm are staggering and frequently overwhelming.


What is your refuge in the storm?  Or do you, like Tim Witt, hang on by the tips of your fingers hoping and praying that you will once again survive another storm without being washed out to sea?  I know many of us frequently feel like we are that sole person in the midst of the storm hanging precariously to whatever pole is close by; however, I urge you to develop your own hurricane evacuation plan so that you might find refuge in the storm.


As the winds begin to grow and the water swells, what are your first instincts?  For some, it is to climb under the covers and cry "not again, please not again, I just can't take this anymore."  We succumb to Hurricane Megrim and just pray that we come out alive.


However, we all have at hand an evacuation route that allows us to get through the storm with the least amount of damage.  We cannot escape the storm, but we can survive it.  My evacuation plan includes a number of safe houses along the way.  These safe houses are reached by phone or internet where I can call a friend who will ride out the storm with me and share their own strength to help me get through it.  Some of these are friends from my pre-chronic migraine days but some are also friends that I have developed because of my migraines - people I have met through My Migraine Connection, Migraine.com, Facebook and other networking opportunities to get to know other migraineurs.  These people are frequently my lifelines, my anchors, in the storm.


I turn to these people when I need someone to hold onto hope for me.  I turn to them when I need to know that I am not alone in the storm.  I turn to them to learn from their experiences with their own storms.  We share survival stories and gather strength from one another.  When I am unable to think rationally, they provide normalcy for me.  They speak words of truth to me, reminding me of other times when I have successfully made it through the storm.  When all I can do is sit and cry in despair, they sit and listen without condemnation.  They don't offer easy fixes or trite platitudes, but they do remind me of the resources that are available to me and help me to find hope and laughter in the midst of the storm.  These safe houses on my evacuation route are a place where I can be me - I can be vulnerable and know that I will not emerge hurt because of my willingness to risk the truth.


While my evacuation route includes a number of other stops - medication, biofeedback, prayer, deep breathing, ice packs, there is nothing like reaching out to someone who is also in the midst of the storm and who is surviving with grace, hope and dignity.  If you are alone in Hurricane Megrim, I encourage you to reach out to others who are in the storm.  I've mentioned a couple of ways to find these fellow journeyers, but if you need help finding safe houses for your evacuation plan, please let me know.  I am happy to share the abundant resources that have been shared with me.


Once several years ago, I read a book about migraines written by patient advocate and fellow migraineur extraordinaire, Teri Robert.  I contacted Teri because her book exuded hope and potential to me and as I read I knew she understood my storm because she lived through her own storms.  She was speaking not from theory but from the heart.  She helped me to connect with other migraineurs who have since become dear friends and safe houses in the storm.


We are all in this together.  We can share our experiences, our strength and our hope and be the refuge to one another that we so desperately need.  You do not have to stand in the midst of Hurricane Megrim holding onto the pole on the harbor by yourself.  You too can have safe houses along a proven evacuation plan.