An Authentic, Sometimes Gritty, and Always Hopeful Blog for All Who Live with Severe Physical Pain

Wednesday, October 23, 2013

Entering Year #9: Four Reflections About My Journey

 Friends and sojourners, I have recently (September 5th) marked the beginning of my ninth year with Trigeminal Neuralgia (TN) and other various (pretty terrible) forms of cranial-facial pain that’s grown through the years. Passing this anniversary while working on the blog, I couldn’t help but ponder where I’ve been and where I am now.

I want to share four key insights with you now, to validate your suffering, or someone you love, and to spur you on to live well despite suffering.

(If you are new my blog I want to let you know ahead of time that it breaks all the rules--
I provide meaty posts rather than just snacks.)

1 - The pain I live with is the worst-of-the-worst...and it’s okay.

I can say this without any doubt or exaggeration, “I am intimately familiar with pain.” 

Eight years ago, I asked the physician who recognized what was wrong with me if my disorder was fatal. His visceral response was spot-on, “No, but you might wish that it was.”

I know what it feels like to have my flesh ripped open; to be electrocuted, to suffer third degree burns, or to have my head crushed in by a baseball bat. (I won’t go on, but the list does.) It is with me all the time, waxing and waning to its own mysterious and unpredictable rhythm.

Medication helps a bit. It’s not “pain medication” per se, as that kind, except for opiates (which deserves a posting of its own because of its complexity...however as for me, I’m allergic to them) doesn’t help neuropathy. The kind I take, anti-seizure medications, help somewhat, although these drugs are not to be taken lightly. Essentially, they put my brain to sleep. I desire to be active as well as careful about advancing long term negative consequences as well. 

I have found the greatest battle, as things go, is not actually the pain. It is my emotions. My anxiety, fear, sense of gloom, worry for my family, etc.  Absolutely, without a doubt, the way I am able to live the majority of my days at peace, and with enthusiasm, and assurance that it’s all okay, is because I decided to give up worrying about taking back control, i.e. “being fixed”. 

Instead, after my final surgery, when I faced the reality that pain will always be my companion, until and unless God heals me, (around mid 2008) I knew, instead of being fixed, I desired to be made new.

The bible is full of words about being made new. 
God is all about changing us for good.  
Here’s just two:  

Therefore, if anyone is in Christ, he is a new creation.
The old has passed away; behold the new has come.
(...And continues to come, because this verse is always at work.)
2 Corinthians 5:17

Behold, I am doing a new thing; now it springs forth, do you perceive it? I will make a way; now it springs forth, do you not perceive it?  

Isaiah 43:19

 The bible, beautiful music, along with wonderful teachings I found on the internet and through my local church about how to live in freedom through trusting in Christ, led me to a new, deeper well of strength and an ability to simply live life with all its ups and downs, joys and sorrows as an active participant.  

Remember...I’m a work in progress...I still get scared,depressed, even angry about my life and how my illness impairs my abilities and puts too much work on my husband and others. God puts up with me even so!

2 - God pointed me soon after the pain came how helping others who suffer was the best way to feel better myself.

My first goal when I became ill was to learn all I could about my disorder, including pain in general. Within only a few months, my husband and I agreed to not let my pain be for nothing. He and others encouraged me to do what comes naturally--help and encourage others. Not long afterwards, I received a call from a woman who had been given my name and number from a mutual friend. She couldn’t hold back her tears as she told me about her diagnosis with TN. I knew right then my time to begin helping others had come.   

It is what makes my life feel right and purposeful...
there’s not much could be better than that!

My life’s goal:
“All praise to God, the Father of our Lord Jesus Christ. God is our merciful Father and the source of all comfort. He comforts us in all our troubles so that we can comfort others when they are troubled.” 
 2 Corinthians 1: 3 - 4

3 - No one can truly understand my pain...and that’s okay.

People who have invisible pain like I do--meaning our pain is not as a result of anything that shows up on the outside of our body-- share a similar sorrow. It is this, “No one gets our pain.”  

It’s the unmitigated truth. No matter how much others love us, or earnestly seek to understand us, it’s impossible to grasp the experience of our reality, when we look completely normal. They cannot wrap their head around what they cannot see, even if what they see is us lying down, crying. There’s no blood...nothing is wounds are visible. 

In addition, since these kinds of severe pain syndromes (such as neuropathic pain, cancer-related pain, CRPS,  severe forms of fibromyalgia, bone and joint related pain, may be rare, hard to diagnose and even harder to treat, it becomes even more difficult for people to see them as real.

I have been misunderstood and misjudged countless times. 

  • People criticize me, tease me, become sarcastic, and outright angry with me for things I find hard to do that used to be easy.  

  • Others believe I should be able to explain why I have pain, or why it is worse today than yesterday. 

  • I am accused of making it worse--for having not done things right to keep pain in check.  
  • I have been accused of only pretending to be in pain to either get attention, or else to get out of working.  

  • Even near strangers have told me my pain is my fault because I am demon-possessed, not praying right, or because I haven’t truly done what the bible says to do. Or because I haven’t been to a certain program, taken good care of myself, taken a certain herbal remedy, or been involved with a certain activity. 

It used to be, these comments/accusations would ring in my head for days,  causing me to question about myself, and leaving me feeling guilty for no reason. These days, most are like arrows that miss their mark. 

In a big part, they began to lose their power when I stopped wanting to be “fixed”, desiring, instead, to be made new, I saw how I was no different before I became ill, than these folks. Simply put, sick people had always been invisible to me. For example, have you seen someone using a store-provided sit-in scooter to shop, because they can’t walk around a big store easily? I clearly remember judging people who used those scooters IF they were very obese, critically believing they caused their own physical problems, turning away without a nugget of compassion in my heart. Ouch.  (It was laughingly hypocritical, as well,  being that I have always needed to lose weight myself!)  

Along with allowing a good dose of humility,  God continues to show how great is His love for me. I don’t need everyone’s love or approval--His is better! Here’s just one scripture I cling to: 

“For I am convinced that neither death, nor life, nor angels, nor principalities, nor things present, nor things to come, nor powers, nor height, nor depth, nor any other created thing, shall be able to separate us from the love of God, which is in Christ Jesus our Lord.”  
Romans 8:37b - 39

As I have grown in my love relationship with the Lord, I’ve been better able to recognize that people respond/act the way the do because they are hurting too: 

~ They may fear how much worse I may become and cope by unconsciously pretending I am okay.

~ They may feel helpless and want to believe my pain can be fixed, regardless of what all the experts say,  how many treatments I have undergone, or how much I keep on top of current research and methodology.  

~ They may fear that what has happened to me may happen to them, and they can’t bear the thought of being in such pain. This compels them to act the way the do. 

~ They may be stressed out, weary, or walking their own difficult journey, and simply unaware of how they come across.

~ They may tend to see others as self-seeking and ill-intended, so they make bad assumptions that appear most logical to them.

~ They can’t imagine a good God would allow me to suffer, for it would rock their world, so they throw out words and poor options carelessly.  

4 - God has provided everything and everyone I need, in great and beautiful abundance.

 I am greatly blessed! 

When came first became part of my life, I had several close friends; now I have two. However, each one is the most rare and magnificent jewel of a woman!  Susie and Connie have walked alongside of me from the beginning--even before that time. They also allow me into their own life’s journeys, so that it’s not just about me, thank the Lord!  

God has also brought two beautifully spirited daughters into my life as wives of my sons, with whom I am closely knitted.  They make my heart sing.

How great is the Father’s love for me.  My husband, my sons, my daughter, these daughters-by-love, and my precious grands. They do their best to understand my’s impossible to really get it. 

The Lord alone understands and that is enough.  

You and I--we together--can do this thing well. Don’t wear yourself out--the Lord is ready to help you. No matter where you’ve been, He makes all people new again by His great love.

Until Next Time, 
Blessings and Peace--
Thank you for positive response to the blog’s new look and changes!  I always, always want to hear from you, your positive as well as your “this need work” comments!

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  1. So glad you were able to reply! Was afraid it wasn't working for you--I'm SO lost with the whole computer-thing!! You have been such a help and blessing to me these 8 years, dear friend! I thank God for you!!

  2. Judi-
    The "New Look' is fantastic and you inspire me to push further on mine as I too learn how to stop letting a computer Scare me!! Oops, that might take awhile..

    Your words pour from that loving heart of yours and you give such insight to the wicked struggle Pain has put before you.. so much of what you shared rang very True with me--as I get close to almost 18 years of living the ups and downs of Chronic Pain. Some of the "Judgement" from friends--church family--hit with the hardest blows and came as a Shock when I thought they were caring and concerned.

    Having to see Pain in others and knowing we can't do anything to "CURE" the Pain is frightening! Its easy to see how the desire to "Turn Away" hits us so fast~~~but the lessons that come from "Stopping to Look--not Stare" can bring such a deeper unity with God. I will see people who are truly in the Struggle of their Life and I am so very humbled! My heart whispers a prayer "God thank you for my Blessings--and Please help the one I just saw" but the memory of that particular moment now lingers with me. I can no longer simply push it behind me~~~~because I know what it means to Suffer with Pain~~how many things I loved doing are now "pushed away from me" and I continue learning to look for the Joy in each day. Sometimes the Joy is Huge, and on other days, I must claw my way toward the Joy--but I am never Alone~~~HE is with me! Bless you Judi for accepting your role in ministering to those around you, near and far who are suffering. I am honored to call you my dear friend. love, martha

    1. You have such a gutsy way with words…"claw my way to toward the joy"… how you capture the essence of what we must do sometimes. Claim it like a soldier who scrambles to put the US flag on enemy ground to announce the battle has been won. He is the one who is leading the charge…we are the ones who must decide if we will trust and obey Him. I'm so glad we are in this together, although, I pray you will be healed during your life on earth!