Dealing with the trauma of illness

Not that I have a total handle on this topic or anything but hey, I have learned a few things worth sharing . . .

Every day for over 5 years I have suffered waking seizure attack episodes of varying duration and intensity.  For over a year (ending last year) they averaged 2 to 5 hours per day!  At least once per month they would spike up to 12 hours on and off in a single day, sometimes requiring an Emergency Room intervention.  I have been to 3 different emergency rooms a total of FIFTEEN TIMES including once by ambulance.  After nearly a year of IV antibiotics for chronic Lyme disease these episodes are generally less than an hour per day now with some positive changes in triggers and patterning.  Significant testing and other treatments, research, and patient “networking” remain my primary occupation.  I am grateful for the improvements that have come including overall less pain from the repeated physical trauma of “head-banging” and wretched writhing movements (thanks to  periodic intervals of physical therapy and periodic chiropractic adjustments).

The journey is hell at times.  At my worst times I have questioned if I could endure this level of suffering one more moment.  My breathing has stopped numerous times and there has been one significant near-death experience with visions of “white lights.”  I have had to pray many times for the Lord to give me the strength to get to the bathroom when alone during hours of convulsive episodes.  Every type of healthcare provider I have ever seen and most close friends and family has witnessed them.  My husband is a saint, having cared for me often late into the night then getting up and going to work the next day.   A total of probably a hundred times he has had to carry me across our home when I could not walk, feed me, take me to the bathroom, assist me with bathing, take me to the emergency room, run urgent errands, and the like as my primary caregiver.  Probably a thousand times he has volunteered to bring me some type of “rescue remedy” to attempt to get the seizures to stop (generally at night or upon waking in the morning).  He never complains.  He is my hero for sure.

In other blogs you will read about all the avenues we have pursued to try and get me well:  chronic Lyme disease, heavy metal detox, mold remediation, obscure infections, dietary restrictions, neurology workups, dental issues, nutritional deficiencies, epigenetic testing and coaching, electrosmog, gut issues, yada, yada, yada.  I spend hours per week researching, managing my healthcare, dealing with extreme mold avoidance and other preventative strategies, and accessing my support system online or by phone.  Church worship is also online to minimize triggers from environmental stimuli, however this strategy also increases my social isolation.  Trips away from home are generally focused on essentials during my best times of day and occasionally with transportation help from a couple of sweet gals from church.  I wear a mask in their cars and sit on a towel covering the passenger seat but we find a way to connect anyways during those trips when help is needed about once per month.

As you can see, there is much abby-normal stuff during my days.  Social isolation and the ongoing seizure attacks are my biggest heartaches.  The latter causes both physical and emotional trauma when they are severe which still happens two of the seven days per week still marked by ongoing episodes.  The two this week included:  1) a violent reaction to an ingredient in an new injected medication that I need to treat osteoporosis and 2) a new strategy to treat severe Small Intestinal Bacterial Overgrowth.  Both of these conditions very likely are complications of ongoing illness as they were not present before I got sick on October 11, 2011.  Each new diagnosis will bring its own special kind of discouragement if I don’t keep my worries in check with my hopes placed in the redemption promised with belief in Jesus Christ.  Already I mentioned a few of the strategies I use for managing the social isolation.  What about the trauma?

I manage the trauma of severe, ongoing illness by trusting in my Lord and Savior, Jesus Christ.  This used to mean that I trusted in the promise of Jeremiah 29:11:

11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.  (NIV)

Surely if there is a purpose for all of this suffering then it won’t be wasted.  It becomes part of a greater plan, encouraging me enough to endure even the worst of the pain and anguish I am enduring.  This viewpoint has helped me cope during the first 5 1/2 years of this illness.  It carried me through the decisions to spend the rest of some savings with the hope of a cure and to endure the side effects of such treatments.  I can look back and point to the skills and information that I have learned, write about them here, take to heart the remarks of others encouraged by my stories, and note the Divine sequencing of many things that have happened along the way.  The Lord has provided so much for my care that gratitude has replaced temporary doubts, frustration, discouragement, intractable pain, and so on.  Seeing some meaning in what I am going through or shortly thereafter, gave both me and Steve enough hope to keep moving forward no matter what the “cost” may be.  But what about when the process stopped?  The money ran out.  I am not recovered.  There was no where else to go this past Winter when I got to the bitter end of my proverbial rope with worse symptoms than I could ever imagine!  Yeah, that was the onset of facial shingles in December.  More hell and a hospitalization too.

That’s when I needed to learn to trust whether there would be a purpose I could see or if there would be no purpose or direction at all.  I discovered that complete trust in our Heavenly Father builds faith and the strength to carry each of us through ANYTHING and EVERYTHING.  It’s a supernatural gift bestowed upon believers in God Almighty who trust Him.  For those of us chosen to travel a path of excruciating suffering, we must find our way to this level of trust in the Lord our God.  Our faith will grow as a result and both will carry us through the dark times no matter how dark they become.  Did I tell you that frightful demonic attacks have come during the worst of the waking seizures?  Yes.  It’s more terrifying than I can describe but may try to do so another time.   At those times only the spiritual armor of God (see Ephesians 6:10-18) and this reassurance spoken by the apostle Paul will quiet my spirit.  God is greater than any threat in this world, in my world, period.

2 Timothy 1:7  (NKJV)

For God has not given us a spirit of fear, but of power and of love and of a sound mind.

Because what is my worst fear anyways?  Dying?  For me it is probably not dying but suffering even more with dying as the end result.  So finding peace when dealing with the trauma of physical and mental suffering must be accompanied by the reminders of Who overcame death, in Whom have I placed my trust, and in Whom will I find victory over my fears.  To extinguish the fearful thoughts I must again turn to the “sword of the Spirit” as described in Ephesians 6:17 as the word of God.  In the Book of John we find Jesus comforting a grieving friend when:

John 11:25-26 (NIV)

25 Jesus said to her, “I am the resurrection and the life. The one who believes in me will live, even though they die; 26 and whoever lives by believing in me will never die. Do you believe this?”

Not only did Jesus overcome the grave when He rose from the dead on Resurrection Sunday (Easter), He gave those who believe in Him the promise of a glorious eternal life in His presence where there will be no more weeping, no more sorrows.  There will be rewards for the faithful too.  There will be perfect peace, love, and joy forever.

the cross

I may never see healing this side of heaven.  I may see healing this side of heaven.  I really have no idea which one it will be or when it will happen.  In the meantime I will simply trust in Jesus Christ who knows my name and sees my suffering (Psalm139) and ordains it somehow for good.  He will be here with me always.  I ain’t dead yet so I trust that He will add His grace and power to see me through to my last breath.  Until then Gentle Reader I ask you,

Do you believe this too?

Some Passion for You

Passion stems from the Latin work pati, meaning “to suffer.” The stem pass comes from the word passive meaning “capable of suffering.” Pass was coined in the early 16th century to denote “the suffering of Christ on the cross.” English also acquired the word through the Old French word passion meaning “strength of feeling.” This has been transferred in our modern times to denote sexual attraction and anger.  (From this website.)

I was watching an interview of actor Jim Caviezel who portrayed Jesus Christ in Mel Gibson’s movie Passion of the Christ.  Jim has a powerful testimony of the physical trauma he endured during the making of that film.  The movie came out in 2004 when I was in the beginning stages of divorce after my former spouse left me.  I was devastated.  Also within that year my grandmother and youngest brother had died, I lost my home, I had to change churches to begin the healing process (distancing me from my support system), my mother was diagnosed with lung cancer and underwent a serious surgery out of State, I lost my job, and had to store my things in 5 places while I began the first of what would become 5 moves of residence.  One of these was after a condo fire which displaced me into a temporary apartment with only the clothes on my back for a time.  Talk about suffering!  Still this was nothing compared to what my Lord had suffered on the cross for my salvation.  But I tell you, I simply could not watch that movie during that time in my life.  I was too traumatized.  It would just be too painful on too many levels.

This week marks the 5-year anniversary of when I first started having wretched seizure attack episodes on a daily basis.  I had gotten sick with a biotoxin illness for 6 months before then when an “alternative” treatment modality triggered the onset of seizures.  (These continued today although gratefully the pattern is changing some again and this could become a good thing.)  The suffering with these often violent convulsions has been tremendous.  Never would I have imagined such a terrible, terrible illness.  (See them here.)  Even the tumultuous years around 2004 do not compare to what I have endured more recently.  Even those who agonized with me during the various aspects of the stress 13 years ago do not compare to what my beloved husband Steve has endured with me during this illness.  Suffering of this magnitude brings hell to earth for a part of every day.

There are other periods of time that I would characterize as suffering:  the incidents of abuse in my childhood.  Some were sexual, others physical beatings, and several involved satanic rituals.  All were profoundly damaging and required years of help, love, and the healing grace of our Lord, Jesus Christ to overcome.  The abuse kept my mind, body, and emotions trapped in various ways for decades affecting my ability to function as an adult woman.  Somehow I did find my way out when I found Jesus Christ as Lord and Savior; eventually the pain, the “suffering” largely went away.  Self-destructive habits and negative thought processes faded.  Forgiveness and healing took its place.  I became more whole, interestingly surging even now to a new level of peace as the seizure attacks lessen.  Suffering from abuse no longer troubles my spirit.

The Lord doesn’t waste anything in His plan for our lives.  After 2006, I got to experience a magnificent restoration from the “years the locusts had eaten.”  (Joel 2:25) For example, the insurance settlement from the condo fire (where I was renting an apartment) ended up paying for beautiful décor in a condo of my own where I could rebuild my life as a single woman.  Flash forward to more recently and I wrote here of the blessings that have come despite enduring a serious illness including meeting all of you through this blog!  And all that childhood sorrow gave me a compassion for others that has served me well caring for others for decades as an occupational therapist.  Despite my suffering, I am grateful that my Heavenly Father and Husband has allowed me to see His hand, His plan that has masterfully created goodness from the suffering He ultimately allowed for His glory.  I now believe it was all for my good too.

unyru paper, collage, art, wall, Romans 8:38, Jermiah 29:11 Christian, artist

Collage art wall mural in the hallway of my condo with a self portrait too.

And what about the more contemporary definition the word “passion?”  The connotation of emotional, physical, sexual energy?  Let’s just say there is much in my life now to be passionate about in having a wonderful husband (my “intended beloved”) who loves the Lord and me too.  Then there’s my love of growing things in the garden (from my mom) that has kept me moving forward on my worst of days in addition to my best of days.  I love digging in the dirt!  Perhaps most importantly is my passion to champion the calling of the Holy Spirit when He compels me to:  serve someone, encourage someone, love someone, share the hope found in Jesus Christ with someone.  When I hear the call of the Holy Spirit moving me in a particular direction, I move forward with a razor-sharp focus that consumes whatever energy and resources are available to me at that moment.  Whether it is in the middle of the night making my husband’s lunch for work the next day or baking cookies (despite a terrific headache) for that service dude who is having a really, really bad day.  Me and my Lord getter done!

This I have come to know:  that if the Lord calls, He empowers us to respond.  That is what passion is all about, good or bad.  And guess what?  He made the suffering, all of it, good for us on Easter morning.  How about if we keep this in mind the next time he calls?

JJ

Waiting

Like an iris corm sleeping beneath the chilled earth

I, too, wait for my moment to emerge from below.

Weathered by icy snow, or warms-n-thaws that heave me so

My countenance strains under the stress despite a Divine plan.

When I stopped asking, “why?” I was left with less hope not more

For my search for meaning had brought me forward to face another day.

No answers have come, few bigger prayers have become reality

Yet my Lord has carried us with His unending love and care just the same.

We are going to make it to a better place one day, don’t you see?

The one where no tears carry the day and all is lovely and good.

Until then I wait or drag myself up after torments in the night, the day

Shall all thus make the happy ending sweeter one glorious day soon.  JJ

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You not Me

If my eyes can gaze upon you not me

To care, to serve, to pray, to worry some

Then maybe my burdens will soften a bit

For I have fixed my angst off my tender frame.

If I can plan my day to give more away

My time, talent, and resources to you not me

For a new challenge that maybe stretches me a bit

Then we shall both emerge stronger when tomorrow comes.

For what good is a man if he gains the whole world

And weakens his soul by burying it deep in self-pity

When we can travel together for awhile

You and I, carrying your bags then you lifting mine.

Seems like a better deal dontcha think

For the moments when I do return home to rest, to reflect

Will find new meaning in what it means to live

When the Lord dwelling in my heart spills over to you.

He is the One Who makes all these things possible

These ups, these downs, these trips veering off that away

We must but trust in His gracious plan, every detail

As He is the reason for you, for me, for glory and goodness too.

Digging down deep

Beneath the wet earth from the late season snow

Chilled like the flavorless angst of my threadbare resolve,

Lies packages of hope:  those tubers, those bulbs yet asleep

Waiting for their time when the sun awakens their beauty in Spring.

Toil not, they do not, using their time of dormancy for its purpose instead

Such that life may burst forth with all that emerges from within

Stored in seasons past, full of sugar-coated memories divided between

The new members, the seeds that join miraculous transformation:  the celebration of life as it comes.

How may I be like the created things all around knowing I am so much more —

Use my time of spinning, of strife, of waiting, of failure whilst holding on for my day of celebration too?

For I am worth more than the fruits of the earth, the birds of the air soaring on high

The giant wonders of dark seas, the furry and creepy crawly ones all around

For they have no sense of wonder to bother to reason or ask the mysterious, the “why?”

They simply trust in the DNA of their making and bid their calling to each moment in time.

I may never know the answers to my questions, my quest to make sense of this suffering that goes on

And that must be good enough for me anyways to make the most of what I have been given

As perhaps a stewardship issue, a story told more in the heavenlies than for me here on God’s green earth to know

That someday, digging down deep in my own soul, my Lord will reveal His glory and I will be glader than the raven capturing her prey from above.

Until then, Gentle Reader, we two must trust in the plans set forth by our Father God

Knowing full well that more lies ahead than the lime green leaves birthed from the showers of April

We shall see God and He will love us now til the end of the age when we blossom to the fullness of our destiny

Everlasting, everbearing, ever singing praise to the Most High Who had our hearts all along dear one . . . He said so . . . the beauty from ashes came as we went on and believed.  JJ

Prickly pear cactus, Indiana, cactus, yellow, flowers, garden, gardening, Zone 5, garden themes, poetry