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The True Source of Grief Paralysis

Psalm 91 is a mixed-media work of art including the use of watercolor, colored pencil and marker by Sarah Marie


A fellow grieving mother, Sarah Marie, shared the following comments on a closed Facebook page in anticipation of the Heaven Going anniversary of her daughter, Christina Grace. I am publishing Sarah’s comments with her express permission. 

Grief is far more complicated than missing your loved one and fearing they will be forgotten. Please take a minute to absorb the message Sarah shares below.

“This month marks one year since we lost our daughter. If I’m open about my pain, well-meaning people say things like, “She’ll never be forgotten,” or “Thinking of you as you miss your precious Christina.” I know they mean well, but their responses show how little they understand of what we experience. 

Yes, I miss her. And if she was here, I wouldn’t have this particular pain and I’m thankful she’s remembered. BUT simply missing her isn’t what creates this emotional (and sometimes mental and physical!) paralysis. 

It’s the scars of trauma. The anxiety. The loneliness of grief. The shallowness of petty people. The exhaustion that comes from insomnia, nightmares, and the exertion of conversation. The racking sobs I cannot control when I just want to be alone but the laundry pile is daunting and dinner needs made. The ever greater, experiential understanding that I have zero control and the way that changes… everything. 

. . . 

Come, Lord Jesus. Come!”

 
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Posted by on June 19, 2017 in Grief

 

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Déjà Vu Day Arrives

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The alarm rang at 4:15, shocking me awake from the four restless hours of sleep I’d managed to get prior to waking Gracen. Time to dress and leave for the hospital for her scheduled appointment to have her wisdom teeth removed.

The day went much as I’d anticipated.

It’s just a hospital I told myself when I first noticed the Mercy sign glowing in the predawn sky.

An inane conversation followed, “Maybe this time we will arrive early enough to get a handicap parking space.” (No such luck Monday when we arrived for her pre-op appointment.)

“Score! Right in front of the hospital entrance.” (Not many people out at 5:00 a.m.)

It’s not an emergency—nothing serious—just wisdom teeth—I told myself as I exited the car and unloaded the wheelchair from the trunk.

Deep breath in.

Exhale.

One foot in front of the other.

Whoosh! The pneumatic doors slide open. All’s quiet at the front desk: nary a volunteer in sight. Elevator ride. Registration. One more elevator ride to the third-floor surgery waiting room.

Thank God for social media and a smartphone! Facebook status updates and videos meet the currently limited duration of my attention span. Reading is simply not possible.

“Gracen Boxx”, the intake nurse calls and we are off. Double doors swing wide after a card key is scanned and we enter the surgical pre-op area which I silently note is eerily reminiscent of the ICU corridor at Freeman Hospital, just a slight bit narrower. I quietly suck in a deep breath as I follow the nurse who is pushing Gracen’s wheelchair to room 323.

Scrubs.

Tile floors.

Medical equipment.

A tech, Kim, enters the room, lowers the bed as far as it will go, and places a gown on the bed along with a plastic drawstring bag in which to store Gracen’s street clothes. The anticipated snick as the curtain is drawn follows as Kim exits the room and Gracen and I left alone in the small cordoned off space.

We gown her up, make a quick stop at the restroom next door then I maneuver the wheelchair into place, lock the wheels, move the foot pedals out of the way, lift Gracen to a standing position and perform an efficient quarter turn before seating Gracen on the edge of the hospital bed. It’s just a wee bit too tall requiring that I boost her up and back before elevating her legs and spinning her another quarter turn to lay prone.

I indulge in a deep breath before shifting the tray table and a chair down to make room for the wheelchair to sit in an out of the way corner.

Sit down!

In comes the pre-op nurse, Jennifer.

The blood pressure cuff velcroed in place.

Temperature taken.

Pulse and oxygenation recorded.

When did you eat and drink last?

When did you last take this medication and that medication individually until the list of her normal meds is thoroughly reviewed.

The dreaded IV is inserted and a steroid injected into the port in her left hand.

Breathe in.

Breathe out.

Doctor Baker enters the room in blue surgical scrubs. He greets us, asks if we have any questions and reassures us that all will go smoothly.

Next up the Anesthesiologist quickly followed by two operating room nurses. I hug and kiss my only surviving child and whisper, “It will be okay.”

hospitalbed2And then it happens. . . the moment I most dread . . . the wheel locks are released and Gracen is moving away from me. “I love you”, I call out to her retreating figure.

The first set of doors swing open, my eyes track the progress of her bed. A second set of doors swing wide . . .

and I pray.

It’s just a simple one line prayer that spontaneously whispers through my mind as the first set of doors begin to swing closed and she’s gone. . .

beyond the reach of my care.

I swallow hard.

Breathe in.

And begin pushing Gracen’s empty wheelchair back down the hall to the surgical waiting room. The fact that it’s empty is significantly sobering to me. It’s a stark reminder of what I fear most—a day when it [the wheelchair] becomes permanently empty.

I’m doing fine, I tell myself, and it’s true.

Then just before I enter the waiting room my mind flashes to another woman I know of whose husband years before was admitted for knee surgery, and something completely unexpected and terribly wrong happened and he never returned home to his wife and children. A painful, life-altering and devastatingly tragic loss of a godly husband, father, son, and beloved coach.

I swallow hard.

I know deep down in the places of my heart that I refuse to examine too closely, that this too could happen to me. Hasn’t it already happened three times before? An inconceivable cord death and the firstborn child we’d looked forward to with such anticipation never came home from the hospital. An unexpected motor vehicle accident and Bethany and Katie never even made it to the hospital. The incomprehensible diagnosis of an extremely rare and progressive disease. I know all too well that life is fragile. That it can be snatched from my feebly grasping hands oh, so quickly, so unexpectedly. I wish I could un-know it. How I wish I could return to my prior state of blissful ignorance!

Deep breath.

I find a seat, drop into it and retrieve my tablet.

I force myself to concentrate.

Ten minutes later David appears and I can breathe just a little easier. Just a little deeper.

I didn’t expect him.

Didn’t ask him to come.

But he read my blog post about this day and concluded that he was needed in spite of the seemingly innocuous nature of this surgery. The same procedure performed years ago by the same doctor in his office on my oldest daughter, Bethany. David was not present that day.

Life has changed in irrevocable ways.

I’m different.

My soul is bigger than it was before—filled with knowledge too wonderful for me—and my soul has shrunk in equal proportion by the invasion of personal experience with the fallen world—a world filled with sin and death. 

I’m very different.

Painfully different.

In no time at all, Dr. Baker stands before us. The surgery is over, it went well, no unanticipated surprises and Gracen is waking up.

Shortly thereafter we are called and escorted back to room 323 which we find empty.

We wait impatiently and then she appears, pale and groggy, but breathing. No neck brace, no breathing tube, no stitches in her face, no shards of glass shimmering in her hair. I stand and touch her cold forehead. Ask if she’s warm enough and request additional heated blankets for her feet and calves because her circulation is poor and they are often cold to the touch.

I take a seat.

Reply to a text or two.

Faint-WomanTen minutes or more pass waiting and watching Gracen’s sleepy eyelids open to half-mast then flutter closed again. And then, out of the blue, I begin to feel faint. I can feel perspiration begin to form on my upper lip and forehead. I feel like I’m going to hurl any second and I ask David if I’ve gone pale.

The tech coincidentally enters the room right after, takes one look at me and asks if I’m okay. She gets me a cold wet cloth with which I mop my face and the back of my neck. David begins to fan me then turns to Gracen as she mumbles a question around her gauze-filled mouth.

She wants to know if I’m okay.

The nurse enters the room. The tech sent her in. I tell Jennifer it’s just stress. I’m embarrassed to have such an out of proportion response to a simple and reportedly successful procedure. I feel the need to explain, but I remain mute. Does she really need to know what makes this simple surgery so stressful for me? Is my pride that important?

I begin to feel marginally better; try to find a comfortable way to sit with my head back or forward toward my knees. There’s no place to recline.

I’m shocked by my physical response. Shocked that I continue to feel faint and nauseous. Begin to wonder if it’s something I ate, but all I’ve had is coffee since four in the morning. David gets me some peanut butter filled crackers from the waiting room, which I slowly begin to eat hoping they will settle my stomach.

Every time I try to sit up I feel faint and increasingly nauseous once again.

Eventually, the nurse disconnects Gracen’s IV, heart rate monitor and blood pressure cuff. David heads out to get his laptop from his car then pull mine to the patient pickup area. (I’m not safe to drive. We will figure out how to retrieve his vehicle later.)

I’m not at all confident that I can get Gracen dressed and into her wheelchair without passing out, but I manage it weak knees and all.

I hate that I have become so weak before her very eyes. How much confidence can she have in my ability to care for her after this? I’ve managed multiple trips to clinics and hospitals and two trips to the ER one of which required a call to 911 and an ambulance ride without such a staggering reaction. Am I just getting worse instead of better two and a half years later?

I follow the volunteer pushing Gracen out to the pickup area hoping she won’t faint and tumble out of her wheelchair and that I won’t pass out in the hall.

And I breathe a sigh of relief as David pulls up just minutes after we exit the hospital. I load Gracen into the front seat and climb in the back leaving him to stow the wheelchair in the trunk.

As I lay my head back in the car, I notice I no longer feel nauseous, no longer feel faint and we haven’t even exited the parking lot. But I’m no longer in that place.

That building.

The facility David and I were transported to and treated with such care and kindness—Mercy Hospital in Rogers, Arkansas. The ER Doctor, nurses, and techs who treated us, cried for us, and prayed over me, for us, and for Gracen.

I am filled with gratitude, respect, and appreciation for the men and women who served us and serve this community day in and day out and yet it’s a reminder of dark and stress-filled days.

A reminder of what’s been lost.

A reminder of the high yet worthy price of love.

And I don’t need reminders.

Every waking breath I draw remains charged with the tension of love and loss and fear and faith. Every single breath is weighted with emotion sitting heavy on my heart.

A text message comes in just before we arrive home from the grief counselor, Ruth, both Gracen and I see. I tell her that Gracen did much better than I and am surprised by the response I receive to my recitation of my unexpected reaction a few hours later. “Yes, we [mental health care professionals] would anticipate a fairly significant trauma response as described in your piece last night.” (She received a pre-release copy of my blog post describing how I expected to feel at this time.)

Ruth’s response is as liberating as it is knowledgeable. Maybe it’s liberating because it’s knowledgeable. And as a result, my mind soaks in this truth . . . regardless of what others think; I’m not a freak, just a badly traumatized mother who manages to hold it together 99% of the time.

Now if I can just learn to extend myself a little grace, to reject feelings of embarrassment and humiliation the 1% of the time when my biochemical response is triggered by unavoidable sights, sounds, smells, words, and fears. Maybe that would represent more of a victory than trying to master my body’s biochemistry.

And Gracen—she is doing well.  When we first got home, I told her we needed that communication device we’ve been selecting and justifying to Medicaid right now.  I couldn’t understand a single word she was trying to speak.  But, the bleeding has stopped and she no longer has a mouth full of gauze.  She’s much more understandable although she sounds pretty croaky due to the tube the Anesthesiologist threaded through her nose and down her throat. We’re also managing pain well and she’s not terribly swollen, although we’ve been told that will get worse before it gets better. So Friday and Saturday may not be very pleasant. One day at a time is my mantra these days so we’ll just let tomorrow worry for itself to the best of our ability.

Many thanks to all who prayed for Gracen, David and me today.

“The insistent prayer of a righteous person is powerfully effective.” ~ James 5:16b (World English Bible)

 
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Posted by on August 12, 2016 in Adversity, Faith, Muscular Dystrophy

 

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Easter, Co-Wounded with Jesus

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Jesus of Nazareth was humiliated, tortured, and ostracized.  For some of us, the passion (suffering) inflicted upon Jesus is not so unlike what many of us have experienced in terms of our own traum…

(Clink on the link highlighted in red below to read the article.)  

Source: PTSD Spirituality: Easter, Co-Wounded with Jesus

 
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Posted by on March 27, 2016 in Adversity, Faith, Links, Uncategorized

 

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Jesus on the Cross and PTSD Soul Wounds

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Jesus helps us to heal from PTSD soul wounds.  Understanding how Jesus is the Christ can help us better engage Jesus as a healer.  The fact that Jesus is fully human and fully divine enables us to …

Source: PTSD Spirituality: Jesus on the Cross and PTSD Soul Wounds

 
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Posted by on March 25, 2016 in Adversity, Faith, Links

 

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Hard Times, Satan’s Devices & Faith

Hard Times, Satan’s Devices & Faith

The last quarter of 2015 was particularly hard for me.  Gracen had settled in well at JBU, David had changed responsibilities at work, which he was really excited about.  I on the other hand, encountered, a big gaping void.

Preparing to send Gracen to college and living independently after I had spent the last year and a half helping with her personal care needs, left me anxious on a level I’d never experienced before.  Her physical safety was my primary concern and following the deaths of three children, let’s just say I had little confidence that I would not lose Gracen too.

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In addition, in April or May of last year I began fielding a new and distinctly different set of questions.  With graduation on the horizon people began asking me what I intended to do with my time – with the upcoming “empty nest”.   Not one person acknowledged that I was not supposed to have an empty nest.  No one seemed to realize that fear for Gracen’s safety, a premature empty nest and an utter lack of purpose might be frightening and emotionally overwhelming.  Then again, maybe people did understand but felt ill-equipped to address it so avoidance was deemed the most comfortable solution for everyone; myself included.  Unfortunately, avoidance left me feeling alone, stranded in my grief, disappointment and fear.  It also left me feeling as if Katie was unimportant in the eyes of the world and as if my fears for Gracen’s safety were unreasonable in spite of the fact that I knew Gracen was at high risk for injury on campus.

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So, by the time graduation passed, I was a bit of a mess.  I began taking an anti-depressant early in 2015 and by June I was unquestioningly aware that I needed more help.  So an anti-anxiety medication was added to the mix and it made a significant difference.  I had not realized just how much anxiety I’d been living with until the miracle of modern pharmaceuticals provided some much needed chemical relief.

Still, I was weary, frightened and at loose ends so once Gracen settled into school and dorm life, I settled into my bed.  I found myself alone, overcome with the grief I had suppressed in Gracen’s presence, fighting to process it or push down to avoid the excruciating pain and rudderless. I also began sleeping later in the day which affected my medication schedule.  One day I realized that I couldn’t recall when I’d last taken my prescriptions.  Knowing I had an upcoming appointment with my PCP I decided to wait to see him so he could help me restart them safely.  Looking back, that was not a good decision.  A downward spiral took hold.

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A typical day looked . . . okay, looks (present tense), because this is still a typical day in my world . . . something like this.  I wake up, get a cappuccino or chai latte, return to bed to read.  I read, write, browse Facebook and email and nap on and off throughout the day. David comes home, FOX news comes on and more often than not he makes dinner.  After dinner, I read, he watches Fox and plays on the computer and finally, lights out.  I toss and turn, mind whirling and when I can’t stand my thoughts and the inability to fall asleep any longer, I start reading again.

Unless I have an appointment with my grief counselor, my trauma counselor (for PTSD), or my PCP everyday is much like the day before.  I’m comfortable with that.  The silence and being alone is easier than being around people. People make me anxious – incredibly anxious.  How does one answer all the oh so simple questions without making others uncomfortable?  How do I answer them without feeling pitiful myself?  “What have you been up to?”, “Will you get a job?”, “Any new hobbies?” A simple, “I’ve missed you” leaves me paralyzed and frantically searching for an appropriate response.  “Me too” is what longs to escape but “Um, thank you” is generally what spills forth.  And as to the what have you been up to question, not much is my reply. No new hobbies, no plans for a part-time job.  The reasons for those brief responses go unspoken as the listener will either feel uncomfortable with my answer or will try to explain to me why a job or hobby would benefit me.  Regardless, a simple “no” is awkward enough as it doesn’t open the door for further conversation.

Is my current daily activity healthy?  Surprisingly, the answer is yes. . . and no.

All those churning thoughts and my writing are a means of working through my grief. The reading is also good for me.  I read suspense, mysteries, thrillers, and romance. They engage the mind.  If I was simply laying in bed, not working through my sorrow and not engaging my mind, that would be cause for concern.

Facebook and email allow me safe access to the outside world.

And the sleep; it’s good too.  I’m trying to take my PCPs advice and get some much needed rest.  He pointed out that should I fail to recharge spiritually, physically and emotionally, I will be running on empty when Gracen inevitably needs additional support. To say Gracen’s shift from walking to using a wheelchair was an enormous change is an understatement of vast proportions.  Wheelchair use involves a mirad of complications I had never considered.  Transfers into and out of the wheelchair, bathroom use with and without handicapped facilities, transporting the chair, finding safe and viable entrance and exit doors, dealing with weather – oh my, dealing with weather!, and a multitude of unforeseen considerations became the new norm.  No one can estimate the demands the next transition in her health will require.  Therefore, I need to be prepared, or be able to get up to speed quickly, in spite of the emotional impact those changes bring.

So I find myself withdrawing from the world around me, to rest, to grieve, to avoid assuming responsibility for making others comfortable with the realities of my life.  I don’t have the motivation or the energy to continue to push myself. Gracen was my motivation.  For her, I would, and still do, force myself forward, but in her absence . . . I lack the impetus to do much of anything.  I’ve struggled with the blues in the past, but never before have I found myself fitting the defined parameters of the clinically depressed.  Just hearing those words uttered by my grief counselor left me deeply ashamed and utterly humiliated.

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Why?  Why would a diagnosis of clinical depression leave me ashamed and humiliated?  I mean really, my counselors keep reiterating that I have suffered loss on a scale uncommon to the average individual, so depression is certainly not an uncommon or even an unexpected response.  I think I felt ashamed because depression is a mental illness and in our society a stigma is still attached to mental illness. Secondly, I had higher, albeit, unrealistic expectations for myself and for my faith.  Clinical depression represented, in my mind, both a personal failure to overcome and, far more painfully, a failure to avail myself of the power of God.  It stank of insufficient faith; not an insufficient God.

At some point along the way I drank the kool-aid and ascribed to the cultural expectation that I was capable of conquering every obstacle by sheer force of will and tenacity.  I should have realized, and in fact, from an intellectual perspective alone, I knew that was lie of epic proportions straight from the slithering serpent in garden of Eden.  That far too prevalent belief system is nothing more than the heart and mind’s rebellious desire to proclaim the soul god.  It’s the cunning and insidious whisper of the snake luring us into believing that with enough knowledge, with enough determination, with enough effort, we are in control.

347cd084-1316-4a6b-ae11-7351050ea284In truth, that idea is nothing but a craftily designed hologram. An idea without formative substance. It’s equivalent to the land of Oz and the impotent wizard hiding behind the castle doors and green drape.

How many times have you heard or used the analogy that if it walks like a duck and talks like a duck, it’s a duck?  Therefore, a Christian can easily conclude in the deeply buried regions of their heart and mind, that if they fail to conquer the human emotions grief generates, from guilt to fear, sadness to anger, and so forth, they are failing to walk by faith.  They are failing to apply the principles of their faith.  They are not the Christian they believed themselves to be and often worse, they have failed to live up to the perceptions and expectation of fellow Christians to inspire saints and sinners alike, to give God glory and praise in the midst of their despair and to minister to others.  In other words, God is not insufficient, their faith is insufficient.  They have failed God’s test of their faith.

But is that really true?  This duck analogy sounds good, but is it universally applicable? The truth is that in a paradoxical fashion, faith demands doubt.  The very essence of faith is to fall short of fact.  Jesus has always been the bridge that spans the gap between what we know to be fact and what we trust to be true.  When my faith, when your faith, falls short of expectation are we then dismal Christian failures?  I don’t think so.  We have simply lived up to the limits of our personal faith at that point of time – and lived up to the very essence of faith in general.

The longer I live the more aware I am of exactly how dependent I am upon the Lord God Almighty.  I am the instrument He forms at the potters wheel for His use.   I am made in His image but I was not, nor was any human, created with His perfect power and holiness. As a result, I am vulnerable to temptation and a failure to differentiate between truth and lies and good and evil on occasion.  And yes, I have fallen victim to Satan’s devices.  I’ve both allowed Satan to cunningly communicate a stark untruth about a simple diagnosis and to lead me to question God’s love and kindness by contemplating the idea that He may have withheld the desires of my heart in spite of the fact that I did my best to delight myself in Him.

What exactly does it mean to delight yourself in the Lord you might ask?   Gotquestions.org addressed that very question and their answer follows:

Psalm 37:4 says, “Take delight in the Lord, and he will give you the desires of your heart.” Taking delight in the Lord means that our hearts truly find peace and fulfillment in Him. If we truly find satisfaction and worth in Christ, Scripture says He will give us the longings of our hearts. Does that mean, if we go to church every Sunday, God will give us a new Rolls Royce? No. The idea behind this verse and others like it is that, when we truly rejoice or “delight” in the eternal things of God, our desires will begin to parallel His and we will never go unfulfilled. Matthew 6:33 says, “But seek first his kingdom and his righteousness, and all these things [the necessities of life] will be given to you as well.”

Did God withhold the desires of my heart?  No.  Children were my heart’s desire and I’ve been blessed with four.  I got to love and nurture each one for a finite amount of time.

Did God steal the desire of my heart from me?  The answer to that is no as well.  My children were on loan to me.  They were always His creation and David and I the chosen stewards.

Were they taken from us because we proved to be unworthy stewards?  I don’t believe that at all, in light of scripture.  God predetermined the number of my childrens’ days and in the case of my daughters he allowed man’s free will to intersect with Bethany and Katie’s number of days.  The Bible tells us that sin impacts all of creation and the cost of sin is death.  So be it accident or illness, intent or natural event, all death can ultimately be traced back to sin.

IMG_4284 (1)My grief recovery is complicated by the anticipation of more loss and the very real and reasonable fear of the destruction another loss will wreck within my heart.  Even grieving families that aren’t dealing with progressive disease often struggle with the anticipation and fear of more loss.  They’ve lost their naiveté – they know bad things can and will happen to them – not someone else – down the road.  But for most it is a vague Spector on the periphery of their minds.  For me it is a far more tangible presence and I must find a way to make peace with that and what it teaches me about the Lord.

Our family was living with progressive disease long before the collision that took Bethany and Katie’s lives. The difference between then and now is the loss of worldly hope.  There is a popular saying, “Where there is hope, there is life.”  I have lost the majority of my worldly hopes.  I know just saying that out loud will cause a great many people to reflexively remind me of all the worldly hopes that still lie before me.  What they don’t understand is that I no longer wish to have any worldly hope.  Worldly hope leads to expectations.  Expectations often lead to deferred hope and as we are told in Proverbs 13:12,  “Hope that is deferred afflicteth the soul: desire when it cometh is a tree of life.” – Douay-Rheims Bible.

I prefer to invest my expectation in eternal hope alone; that of eternal life with my savior and fellow saints, because that hope is the only one guaranteed to come to fruition.  I’m confident my hope of eternity will be fulfilled and not deferred.

However, I have yet to make peace with the role progressive disease will play in our lives, precisely because of all my prior losses.  It feels unfair.  It feels too much to ask of any one believer.  If this is what God’s love looks like, my more cynical perspective leads me to beg Him to share the love (with someone else)!  And yes, God can carry me through anything He allows to happen in my life, but before anyone reminds me of that truth (because I am well aware it’s true) put yourself in my shoes.  Google ARSACS (a rare form of Muscular Dystrophy) and read about what it does to an individual and then imagine walking that path with your child.  Imagine helping your child as their health declines.  Imagine standing by helpless to change it or improve their quality of life.  Imagine the things I’ve eluded to and left unspoken.  Making peace with God’s plans, with His will, with His sufficient grace is far harder when it’s personal, when you find yourself “feeling” as if His grace might not be quite be sufficient for you after all you have endured already.

PTSD-battle-PINI have reached the point of acknowledging that the best I may be able to hope for in regards to ARSACS, may consist of a cycle of repeated but temporary interludes of peace.

We live in a continuous grief cycle.  Gracen loses a previously mastered skill and we mourn and despair it’s loss and the daily ramifications that ripple out in waves from that loss. Eventually, we adapt to her new normal and settle into a wary peace until the cycle restarts with a new loss.  It’s just the way life works in our home.  Every time the cycle begins anew, we hurt.  Fear arises as does disappointment and sometimes even despair. I’m not sure if the Holy Spirit is actually doing a new work of trust and peace with each cycle or if each cycle simply forces me to acknowledge an as yet unconquered weakness (or doubt) in my faith.  Maybe I just keep spinning my wheels without making any forward progress.  Yet a person who is maturing rarely notices the subtle changes until enough growth has occurred and their pants are inch too short.  I imagine spiritual maturity is as subtle a process as manifest in physical maturity.  It’s only looking back far down the road that real progress is recognized.

Food-antidepressantToday, I am doing well to say without shame, my name is Janet Boxx.  I am clinically depressed.  I have anxiety issues.  I have PTSD.  I self medicate my anxiety with food.  (Ok, that I’m ashamed of – although I’m happy to report that while I may be a glutton, at least for now I’m not a suicidal, drug or alcohol addicted, glutton).  I lack the motivation to return phone calls, emails  and text messages; to clean my house, pay bills, shop for groceries, do laundry and sometimes even to shower.  It is what it is and my response to my life’s circumstances is not abnormal in the bereaved parents community, even two years down the road.

Having said all that; do not drop by unannounced!  I still have the capacity to feel great embarrassment and utter mortification.  Just because I’m comfortable in my current state of sloth doesn’t mean I’m equally comfortable having friends and family witness it.

Before speculation germinates, let me just say that David has demonstrated the utmost patience and support. He has taken on the tasks I normally do without complaint, anger or resentment.  He has a servants heart and demonstrates his love for Gracen and I in actions more than words.  He guards my privacy. David is better at compartmentalizing his grief than I am.  He has not, nor has ever, abandoned me to my grief and more importantly has never criticized or judged the way in which I am coping with the very same losses he, himself, is dealing with.  Our experiences with trauma are different because we were exposed to different things and took on different roles at the scene of the accident, at various hospitals, at home caring for Gracen during her recovery, with the medical community and the legal system and we simply deal with trauma differently.

This is what my life looks like when the Potter decides the pot He previously formed has served its intended purpose.  This is what my life looks like once I was fractured into minuscule pieces, returned to softened clay, and set to  spinning on the Potter’s wheel while He molds me into a new shape with a new or more complicated purpose in mind (after all, I am still a wife and mother).

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And you know what?  As ugly as this lump of clay currently is, as uncomfortable as it is for me to find myself in this state, it’s okay to be a lump of clay in the Creator’s hands. There is no safer place to be and while others, myself included, may worry about who and what I’m becoming, I’m confident God is not.  He sees beyond the here and now – past the dark tunnel I’m traveling through – clear to an eternal future where He will literally light my world.

 
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Posted by on January 29, 2016 in Adversity, Faith, Grief, Muscular Dystrophy

 

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Trauma Momma?

IMG_4279I haven’t wanted to talk about trauma and how it impacts an individual – those who grieve in particular.  I haven’t wanted to go there primarily because of the reaction one receives if they try to talk about it – skepticism.  I’m not sure if people think they can simply look at a person and tell they are dealing with the after effects of trauma, or if they simply don’t believe it happens to people outside of the military and first responder communities.  Who knows?  The truth is we all experience trauma – usually in small, manageable measures.  Generally we ride it out, push through it, brush it off and move forward and beyond it.  We remain standing and to the outside world appear largely unscathed.  But sometimes we experience trauma of a far greater magnitude.  Below are the sobering statistics of how people are affected by trauma:

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Traumatic experiences may or may not result in PTSD – Post Traumatic Stress Disorder. The general public understands little about this disorder. I understood little about PTSD and am slowly learning how it might impact an individual.  What little people do know about the disorder has come from TV and movies and is usually – justifiably so – attributed to military personnel who have seen and experienced frightful & life-threatening situations.  Combat related PTSD generally results in the most severe effects and can dramatically alter an individual’s every day existence.

PTSD, like many other conditions, can be experienced in mild, moderate, severe or extreme forms.  What most people don’t understand is that it can develop in an individual who lives in a continual state of heightened anxiety (soldiers on patrol who’ve never seen combat, individuals – especially children – and family members who cope with life-threatening illnesses such as cancer, parents of special needs children, individuals who live in high crime neighborhoods or who have become refugees due to war or natural disasters all qualify) or PTSD can result from a single traumatic event.

If you asked a random group of people to describe the symptoms of PTSD, I imagine the single most common response would be flashbacks.  A heightened sense of situational awareness is another common symptom of PTSD and I believe, the general public is vaguely aware that sounds, smells, and images can trigger disproportionate responses in those who suffer with PTSD.  Less understood are the more subtle ways in which people who have experienced trauma internally process their experiences and the ways in which previous trauma changes an individual and therefore how they cope with subsequent traumas.

Shock is an additional component closely related to trauma.  One thing I didn’t understand about shock was the duration of time an individual might live and walk through life under the influence of shock.  I didn’t understand that disassociation – a means of separating oneself from the events until one is capable of dealing with them is what long-term shock looks like.

There was and continues to be a lot I don’t understand about shock and trauma.  For one thing, people are amazingly resilient and for another, every individual is unique and can respond and react to the same trauma in unique ways.

So what kind of symptoms are commonly seen in individuals who suffer from PTSD?

*Extreme reactions (emotional and physical) to sights, smells or sounds (triggers) that remind the individual of traumatic events

*Avoiding people, places, and conversations related to the trauma

*Avoidance behavior designed to escape thoughts, memories and heightened levels of anxiety – abuse of alcohol over-the-counter or prescription drugs, watching TV, spending time on the computer or reading excessively – anything that numbs pain or distracts the mind

*Experiencing feelings of emotional numbness or detachment, lack of interest in things previously enjoyed, guilt and blaming of self and others, depression

*Inability to concentrate, irritability and/or angry outbursts, difficulty sleeping

*Panic attacks involving intense fear, heart attack symptoms including chest pain, numbness, tingling, dizziness, shortness of breath, shaking, sweating and hot flashes

*Nightmares about an event

*Flashbacks – visions of a traumatic event where the individual feels as if they are reliving the experience while awake

 

Aside from combat exposure, what kinds of trauma can precipitate PTSD? Surviving or witnessing situations involving extreme stress such as physical or sexual assault,  natural disasters, torture, imprisonment, accidents and the sudden or unexpected loss of a loved one.  Law enforcement officials, firefighters, paramedics, and medical professionals frequently deal with traumatic situations that make them vulnerable to PTSD.

Simply surviving traumatic experiences puts a person at risk for developing PTSD. However, most people will not develop the condition. Experiencing extreme fear or helplessness during the traumatic event, seeing others injured or killed, isolation after the event and dealing with additional stress such as pain & injuries, loss of a loved one, home or job, and a history of mental health issues all increase the risk of developing PTSD.  Women are twice as likely as men to develop the condition.

There are several ways to lower the risk of developing PTSD.  Support from family, friends, support groups and developing a coping strategy are chief among them. Surprisingly, how well an individual personally believes they responded during and immediately following a traumatic event or through the course of a series of lesser traumas plays a role in the development of PTSD.

If an individual is able to act in a manner they perceive as effective during the traumatic event, if they feel good about their response in the face of danger, they are less likely to develop PTSD.

More than a year after the collision I received a CD from the McDonald County Dispatch Center of the 911 calls and the coordinated emergency response efforts related to the car wreck we were involved in.  It was disconcerting, to say the least, to hear my shrill voice in the background of two of the 911 calls reporting the accident.  There was a definite tone of hysteria in my voice.  However, the first emergency service provider who arrived on the scene, the Pineville Fire Chief, Gregg Sweeten, told me that when he approached me at the side of our minivan, where I was kneeling and supporting Gracen’s head and shoulders, he thought I was a bystander who had stopped to help and had no idea that I was a passenger in the vehicle, let alone Gracen’s mother.

The grief counselor I see asked me how I felt about hearing that I was not initially identified as a victim.  I hadn’t really thought about it from that perspective but I’m glad she asked because it led me to analyze my feelings.  It helped me to realize that overall, I feel good about my response in the aftermath of the motor vehicle accident.  There are things I wish I had the wherewithal to do, such as checking for a pulse or deciding if CPR should be started.  But, I am thankful that I didn’t become hysterical to the point of inactivity or worse by far, to the place where my behavior prevented Gracen, David and O’rane from receiving needed medical care.

I’m glad I was able to help a bystander locate O’rane’s bag so the hospital would be aware of the medications he was taking.  I’m glad I was coherent enough to explain to David’s mother the scope of our accident quickly over the phone.  I’m glad I was able to tell the paramedics that Gracen is allergic to penicillin, to verbalize the medications she takes and the name and nature of her disease so the medical team might know about potential drug interactions, etc.  Had I fallen to my knees screaming out my agony and despair, emergency workers would have been distracted from caring for Gracen, and frankly, her life hung in the balance at that point in time.

I am beyond grateful that I was able to hold it together so that she got much needed medical attention and that I am not left with the suffocating knowledge and guilt that would have surely destroyed me had my reaction in the moments following the collision resulted in a failure for Gracen to receive prompt medical care resulting in her death.

I can’t say I’ve handled every traumatic experience in the way most beneficial to my daughter.  There were moments when pain was not managed well, when I escaped Gracen’s hospital room, in effect abandoning her to the care of the medical staff and leaving David or my sister-in-law, Sandy, alone in that room to cope with this new trauma.  How does a mother, or a father for that matter, determine if staying with their child when they are personally falling apart is more harmful to their child’s psyche than leaving the room so that the child doesn’t carry the burden of their parent’s despair along with their own?  All I know for sure is that had another family member not been present, the staff would have had to drag me out before I would have left Gracen alone regardless of my state of mind.

Several years ago, I was driving home from dropping Gracen & Katie off at school when I heard a news report on the radio.  The report stated that research had shown that long-term care givers were among those who suffered from PTSD due to the constant anxiety.  I remembered thinking at the time, “I wonder if I have that?”

Looking back, and having become aware of lesser known symptoms of PTSD, I can see that not only was I actively practicing classic avoidance behaviors but that both Gracen and I were exhibiting emotional responses common to those who suffer from PTSD long before the collision that so impacted our lives.  Observing the physical changes related to Gracen’s disease, coping with chronic daily migraines as well as complicated migraines, coupled with painful medical tests, fears related to safety and an uncertain future took a toll.  The most painful of which is the realization that the avoidance behaviors that allowed me to continue to perform day to day tasks while enduring the unrelenting anxiety also resulted in distancing myself from greater intimacy with my daughters.

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Avoidance behaviors serve to insulate your heart from further pain and are a form of psychological protection.  For example, consider the mother of a child who is undergoing cancer treatment.  You may find her consistently present in her child’s hospital room.  She brings a book or her tablet to occupy her time while her child sleeps or during times when her child is undergoing tests she can’t be present for, such as an MRI.  As her child’s condition worsens you may notice that during times when her child is awake the mother may still be consistently present, may meet every physical need but personally engages less frequently.  She may play with her smart phone while her child watches a movie instead of watching with them.  She may read while her child colors a picture instead of coloring with them.  She slowly and without conscious awareness, disengages from personal contact.  The behavior that grants her a distraction from her worst fears and lack of control, also creates an emotional disconnect that is nothing short of emotionally  devastating when she becomes aware of them.

This is the face of PTSD.

IMG_4280Rarely can you identify an individual who is coping with PTSD by simply observing their behavior.  Unless you are present when they encounter a trigger, have a flashback or wake up screaming in the middle of the night, PTSD can silently hide beneath a veneer of socially acceptable behavior.

Even when someone suffering from PTSD encounters a trigger or experiences a flashback you may not recognize the trembling hands, the internal panic, the flinch as gruesome images assault their minds.  When they drop out of normal activities you may simply think they are grieving instead of recovering from a night without sleep or filled with nightmares.  And how many people are privy to the methods of distraction utilized or the inability for those affected to perform simple tasks like returning phone calls, making appointments or paying bills?

Then shame takes stage causing the individual to castigate themselves for all they can’t seem to control or accomplish without understanding why the lesser know symptoms of PTSD are plaguing them.  Unless they’ve seen a counselor, they may not even know they have PTSD.

And of course, depression plays an active role as well.  There’s also a difference between a mild or moderate case of depression and full-scale clinical depression.  While the symptoms of mild and clinical depression are the same, the intensity of the feelings, the degree to which everyday life are impacted differ greatly.  Change in sleep patterns – sleeping too much or too little.  Change in eating habits as evidenced by weight gain or weight loss.  Sadness on steroids.  Lack of motivation.  On and on it goes.

Outsiders look in and can’t understand why this person declines invitations.  Why they don’t return to normal activities or get a job or do any number of other things in order to help themselves never realizing the extreme melancholy, fatigue and shame often prevent them for taking the initiative for anything.  It takes too much energy or exposes their vulnerability to the outside world.

Who wants to admit they are clinically depressed?  Aren’t those people in institutions? Who wants to confess to struggling with PTSD?  Isn’t that just a bid for attention?  Who wants to personally accept that simple things are much too difficult – that they can’t quite cope – that they aren’t enough – that the awareness of their utter lack of control is terrifying?

Where is your faith, one might ask?  Right where it always was, solidly grounded in my Savior, Jesus Christ.  Then why can’t you trust in His loving care?

Consider Isaiah 43:2 with me.

“When thou passest through the waters, I will be with thee; and through the rivers, they shall not overflow thee: when thou walkest through the fire, thou shalt not be burned; neither shall the flame kindle upon thee.”

 

We like this verse because we concentrate on God’s promised care.  But it seems to me that we only meditate on the “good” parts of the verse.  We focus on the fact that the waters won’t overflow is, the fire won’t burn us or kindle a flame on us and that God will be with us, but we overlook or ignore the less desirable truth this verse reveals.

We will be in deep water fighting to keep our heads above the surface.  We will walk through the fire.  And God will be with us – but we will still feel the water rise, we will still feel the heat of the flames.  Experiencing PTSD or depression are not evidence of a failure to trust God, they are simply normal responses to trauma.  They represent the deep waters and the firery flames of life’s tribulations.  So we’d do well to recognize that it won’t be easy in spite of God’s presence.  And it will likely take a great deal of effort to try to respond in a Biblical way, and there is love and grace and mercy when we stumble or outright fail to behave as we believe or expect we should.

There is hope of healing.  Hope in making peace with an unknown future when experience has taught us that it will be painful.  There is hope that we will exit the firery furnace without the stench of bitterness clinging to our hair and garments. There is hope that shock, depression and PTSD will not define us but instead refine us, but oh, it’s a slow and painful process and we need to show ourselves grace along the way.

My personal prayer is that I will lower my self-imposed expectations, that I will be oblivious to the expectations and perceptions of others and that I will find overwhelming comfort in the unfailing presence and love of God because the spirit is indeed willing but the flesh is oh so weak.

 
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Posted by on December 4, 2015 in Adversity, Faith

 

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Record my Misery

Record my Misery

Record my misery . . . List my tears on your scroll. Psalm 56:8

Today marks a year and a half since Bethany and Katie were killed by the reckless actions of an unlicensed driver (a three-time offender by the age 19).

I wonder if Troy Robins, and the parents who failed to teach him to respect and obey the law, feel any responsibility at all? If Troy Robins feels any remorse for the destruction he’s wrought in our lives? I certainly haven’t received even a cursory apology.

I wonder if he suffers flashbacks from that day? Are his dreams filled with the hysterical sound of my voice as I discovered my daughters? Is he haunted by the image of Bethany’s broken neck, of Katie’s slashed forehead of the sound of Gracen wheezing as she struggled for breath with a collapsed lung? Does the image of the yellow plastic sheeting quickly draped over Bethany’s body remind him, like it does me, of the oversized trash bags my mother-in-law buys from the Boy Scouts annually. Can he imagine the message that image communicates to a Mother?

Do the sounds of sirens and flashing lights make him want to curl up in a ball and cover his ears to block out the sounds and sights? Do they make his heart race?

Does he wake up every morning dreading the day ahead and stay up late every night trying to stave off the dawning of the next day?

Does he find menial tasks, cleaning house, making meals, paying bills overwhelming like I do?

Does he have to respond to polite inquiries as to how he is doing? Does he feel like a bug under a microscope with everyone personally judging his actions based upon their own preconceived ideas?

Does he feel smug because he escaped prosecution for two felonies and paid less than $1,000 in fines while we paid tens of thousands of dollars in medical bills?

Does he feel guilty for stealing Gracen’s last days of independent mobility or prideful for his own lack of personal injuries? Is he still driving illegally today putting other law abiding citizens at risk?

Did the events of December 26, 2013, change him in any way, shape or form? They changed me. They haunt me. They traumatized me. They changed David and Gracen in tangible and intangible ways.

The images flash through my mind – sights and sounds from the roadside. Police, firefighters, paramedics, a neck brace, a backboard, the inside of the ambulance as it pulls away separating me from my sole surviving daughter.

Blue sky, bumpy ride, greeting and condolences from the charge nurse. WHERE IS MY DAUGHTER? IS SHE STILL ALIVE? Nurses, CT scan, chaplain. WHERE IS MY DAUGHTER? IS SHE STILL ALIVE? WHERE IS DAVID? WHERE IS O’RANE? HOW DO I REACH HIS FAMILY? WHERE ARE BETHANY AND KATIE? Doctors, nurses, prayer, stitches. Oversized scrubs.

Hospital waiting room. Bethany’s best friend and family. Our pastor, his wife, church friends, my in-laws. OH, NO, GRACEN IS ALONE! OH, GOD, WILL SHE DIE ALONE? Relief, Gracen is not alone. Family has arrived in Joplin.

Informing in-laws, family, Bethany’s boyfriend overseas . . . and Gracen – twice.

Chauffeured to Joplin cloaked in darkness. Squeezing David’s hand and whispering, “They knew they were loved.” Talking to my Dad. Emailing my three closest friends.

Waiting, waiting, waiting. Gracen still in surgery. The hush of the ICU. Gracen covered in bruises, stitches, staples, a neck collar, attached to a ventilator, an external fixator protruding from her leg, IV pushing fluids, antibiotics, pain killers, blood pressure cuff puffing up, tightening, releasing, chest tube, broken pieces of glass glistening in her hair, her life still in the balance. Beeps and blips, whooshing sounds. Pale skin, cold hands, no movement. David in a wheelchair, dry heaving. Alone with Gracen.

Family and friends coming and going day after day, night after night.

Media reports, pictures on TV, in print, phone calls, text messages, Facebook posts. . .

Pastor, funeral home director, decisions, caskets, flowers, music, Bible verses, pictures.

Following the ambulance to UAMS New Years Eve and into the wee hours of New Years Day. A quick stop at home. Sorting through debris left by the roadside, shattered electronics, cherished stuffed animals hugged close to my chest, inhaling Katie’s individual scent, never used or worn Christmas gifts.

Leaving Gracen behind, family and friends standing in line, hugs and tears, funeral, cemetery, dinner, long, dark drive back to Gracen.

Doctors, nurses, low lights, bright lights, anger, fear, pain, hallucinations. Latex allergy, surgery, more surgery, x-rays, oxygen, chest tube out, chest tube in, lost weight, bedpans, stitches and staples removed, leg immobilizer, wrist splint. Traumatic Brain Injury?

Meals, motel rooms, sharing daylight hours, trading nights between hospital and motel.

Bright blue sky, ambulance tail lights. Home. Gutted doorways, exposed foundation, hospital bed, belly shots, sponge baths, care aides, home health nurses, OT/PT, pressure sores and debridement.

Gracen passed out, incoherent, 911, firefighter, paramedics, ambulance, ER again.

Attorney calls, no charges filed, accident report, reconstruction report. No charges filed. Prosecutor’s re-election campaign. Legal research, uncommunicative, ineffective prosecutor. No charges filed. Coroner’s Inquest. Misdemeanor charges filed.

Hospital bills, doctors bills, bills from the radiologist, the ambulance companies, the life flight service – oh my word, $35,000 for the helicopter. Bills, bills, bills. Late notices. Calls from creditors, collection threats. Collection letters, collection calls. What happened to our once stellar credit rating? I don’t even want to know – to try restore our good name.

Crosses on the roadside, markers on graves. Court room. There he is, the man-child who killed our daughters. He, and his mother, immediately turn away. Why am I not surprised? A shocking not guilty plea. We have to come back to court again. A defiant guilty plea. A slap on the wrist days after Christmas a full year after the collision.

Constantly churning thoughts, injustice, politics. Beliefs and faith challenged, relationships stretched, strained, damaged. Hard truths, platitudes, admonitions. Lack of forgiveness? Vengeance or justice demanded? Pity party? Choose joy. Praise God. It will be OK. God is in control. Was not God in control that day? Am I supposed to feel that what happened was OK? Is the measure of my faith dependent upon my ability to embrace my daughter’s deaths? Is worship and counting this trial joy for the spiritual maturity it will develop suppose to blunt or even erase the pain?

Tension, anxiety, restlessness, pharmaceuticals. Relief?

Round and round and round we go – fear and fatigue, shock and resignation. Sorrow. Lost hopes, lost dreams, unfulfilled expectations. No graduations, engagements or weddings for Bethany and Katie. Lost grandchildren. Lost identity. Lost purpose. Lost future.

How are you? Fine (Freakin’ Insane Needing Extraction). How are things? Good (Going On Only Downward). Oh, yes, I’m fine, things are good. We have new floors, new doorways, new paint – empty bedrooms. How could we be anything but grateful?

What has Troy Robins lost? We’ve paid the price for his sins. Did it cost him anything other than a few measly dollars pulled from his parents pockets?

On and on the questions race as the images flash. So very tired. So very disappointed. So very broken. So very lost. Head pounding, heart flayed open longing to be validated instead of feeling criticized and being placated. Simultaneously thankful for God’s provision, for eyes unveiled to see His care amidst the destruction. Does anyone realize sorrow and gratitude are not mutually exclusive?

When I long to flee His presence (because His will supersedes my dreams and plans), the Psalmist reminds me there is no place I can go where He is not – a highly frustrating consolation. When I feel forsaken, red letters remind me of the comforter who quietly resides within – forever present – never alone. When Satan taunts and condemns, I feebly try to strap on the full armor of God.

Faith built in the past is the foundation upon which I huddle in a fetal position as the storm continues to rage upon me. I may be beaten and battered, broken, lost and even despairing, but there is a firm foundation beneath. While I no longer believe I will not suffer more hurt and loss in this life, I remain fully confident of the only hope I am truly promised – my eternal future with the Savior who paid for my sins.

While some may accuse me of throwing a first class pity party, I choose to believe that in sharing Christ’s sufferings I am glorying in Him (see Romans 8:17).

Do we not rehearse Christ’s sufferings every spring? Do you think Christ’s spiritual and emotional sufferings paled in comparison to His physical sufferings? Do we downplay or elevate the fact that Christ endured betrayal and abandonment by His friends and disciples for the joy set before Him? That He took our sin and shame upon Himself for our eternal good? Does your heart not break as you picture Him crying out in desperation and despair from the cross, “My God, my God, why hast thou forsaken me?” Is not Good Friday about counting the cost? Is it wrong for this broken mother to do the same?

(Facebook Post 6/26/15)

 
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Posted by on October 22, 2015 in Faith, Grief

 

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