Monday, November 26, 2012

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.


  1. Oh, Cyndi, I am so sorry to hear that you are continuing to have such a difficult experience right now. I remember the days of feeling grief over my past life, which CFIDS ripped away for so many years. I remember trying to explain my "invisible illness" to others who couldn't comprehend the fact that I was truly ill underneath the makeup and phony smile. You will continue to be in my thoughts and prayers. I love you. Lindsay Holmes

    1. Lindsay, thanks so much for your sweet words! I know you have been there! Thanks for the prayers! I love you too - Cyndi

  2. Cyn, Your courage and vulnerability are absolutely beautiful. I am so glad you hit "publish". The more we talk about our lives behind our 2nd nature mask, the more people will be educated and we can get validation, encouragement and support that sometimes we just don't want to have to ask for from...well anyone. We just need it.

    I identify with what you are saying, and especially what you said about trying to focus on what someone is saying when there is so much stimulation inside and outside your body. I don't think I've acknowledged or explored this--maybe because it is just how it has been, but holidays are rough for me too. It is a loss for things to be so different. I usually spend most of the time in bed or feel like I'm constantly apologizing because I cannot be present.
    Thanks for sharing because it helps us know your heart/life better and it encourages others to look at our hearts/lives. <3

  3. Cyndi: So brave and so honest! And I relate as I was just telling my husband that I feel like I've lost all my friends and family sometimes. They don't want to call because they don't want to disturb me if I'm having a migraine. They don't invite me to activities because of the driving issues and the fact that I almost always have to cancel due to medications and pain from migraines. It's so discouraging!
    But... You continue to inspire and make others have hope. I recently read a book that said, how do we know that our lives aren't perfect? While the medical issues seem unfair and overwhelming at times, look at all the people you have inspired and provided helpful information to through blogs and groups! God is working through you Cyndi (but I still hope you have a less painful day). Thanks for the Love!

  4. Cyndi,
    I have been in a bit of a low spot and today is the first day that I am able to really form coherent thoughts. But I am so grateful for this post. I especially love this:
    "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."
    As a person who is struggling finding the hope--I do think I can hope for the quest of a good sense of self.
    Thank you...Ashlie

  5. Please forgive me for not responding to your lovely posts. I have been out of town and seeing the doctor and this has been my first chance to really sit down at the computer. Kelly, Laurie, & Ashlie, you are all three such special people and I feel blessed the my blog had something to say to you and that we can mutually encourage and support one another in this life we are living! Love to you all!