It’s all I have left

I hit another wall today:  one that reminded me of my inability to control or think my way out of pretty much anything.  Have you been there?

Amassed in noxious symptoms after finally venturing out of the house on my own today, I had thought things were going pretty well earlier.  I was becoming sicker so I came home to unpack my stuff from some errands and rest a while before making dinner.  Losing the next 3 hours in bed after coming home was not what I expected.  After all, I am getting better right?  Well I’m not sure just yet.

Sometimes a person just has to stay focused on a moment as small as one breath in time.  At least I could breathe this time when the “non-epileptic seizures” hit.  Gratefully I had my phone with me and the app for Harvest Fellowship  messages would fill my mind with the Word of God.  When there was a break in the action I could get it going, listen, and maybe relax.  The darkness of my spirit lifted somewhat as Pastor Paul Mowery began to speak.  I missed my husband who was away at the midweek church service.  To text him to please come home did cross my mind.  But then I realized that the One I really needed was already here . . .

I cried out to the Lord and He met me there in that dark bedroom refuge.  Our pastor’s words from the Book of John about abiding in the love of Jesus Christ filled me like a cup of warm cocoa running through my veins.  Then when the recorded message began with a recounting of the disciples “visibly shaking” as Jesus teaches of His upcoming death, resurrection, and perfect peace I lost it.   The seizure-like attacks had already been in a continuous pattern of havoc for over  30 minutes.  “Visibly shaking?”  Yeah.  I get it.  Only I am not only afraid.  I am sad.  I am grieving the loss of so much with this illness.  I am broken.

27 Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.  (John 14)

Yesterday I said to a friend on Facebook that the shortest verse in the Bible is John 11:35, “Jesus wept.”  The God of the universe was displaying His human compassion for the death of a friend and for the terrible wretchedness that we must endure in our earthly lives.  I shared this to encourage her that the Lord sees her pain over the death of friends or their loved ones recently.  This verse speaks to me today too.  My Lord sees my suffering, so much loss (i.e. time, money, fellowship, activities, health, fitness, and intimacy with my husband), heartache, and weakness.  He grieves yet He knows my heart and loves me more than I can ever know.  He is not the God of this world so there will be pain and suffering in this world.  No one escapes these.  Jesus Himself will come again in glory and gather those who know Him to be with Him through all of eternity.  When I die I will see Him and be in His glorious presence forever.  And while I am still here, I know that He will use all of this for my good and His glory too:

And we know that in all things God works for the good of those who love him, who have been called according to his purpose.   (Romans 8)

Right now I don’t feel as bad as I did earlier this evening.  It’s very early in the morning and I feel like some things got worked out this evening.  It’s as if my Lord and King has me cradled gently in the shadow of His wings and that’s a great place to be for restful sleep.  All of the other things that I write about in this blog (my eBook, online jewelry) should never take the focus off of what and Who is most important in my life.  Jesus rocks!

Very simply I’ll close with this:  I love you Lord Jesus Christ and I want everyone who reads this to know you too.  After all, when I do take my last breath it will be all that I have left.  Gentle Reader:  how about you?  JJ

They really need to work on their transfer technique!

Sometimes I simply take for granted the skills I have as an occupational therapist, even when this OT is on an extended medical leave.  Allow me to explain  . . .

The writing was on the paneled walls metaphorically today when an appointment for a medical evaluation by a new doctor turned out to be in a water-damaged building (WDB).  I had a bad feeling when I noted the address of his office:  in an older part of town with offices that were probably built at least 25 years ago.  I knew that another building down the street was flooded during a bad storm last year so it seemed possible that this building could be:  1) older, 2) a WDB, and 3) laden with automatic air fresheners to attempt to cover up any residual odors!  What I did not count on was the receptionist/medical assistant wearing perfume as well!

The scent of Dollar Store air freshener greeted me inside the glass doors of the 70’s style concrete medical office.  The scent was even more concentrated in the tiny office of Dr. O.  I had barely finished the new patient paperwork when the neurological symptoms hit.  Oh boy, here we go again!  I looked up and saw water stains on one of the grayscale ceiling tiles; there was at least one water stained tile in each room I entered this afternoon.  The medical assistant received my completed paperwork and took me back to the patient screening room.  No sooner had I stated my usual precautionary mantra of what to do/not to do if in case of “neuromuscular events” before the random fireworks of tic attacks began.

I aced the eye exam and I was pleased.  Steve and I have not had the funds of late to update our eye exams or corrective lenses for the past 2 years so it was good to know that perhaps not much had changed for me.  Conversely, the nature of my Doctor visit was about to change drastically.  The medical assistant (with great purple-striped fingernails) invited me to sit in the exam room and wait for Dr. O.  As soon as she closed the door, my whole world began to rock-n-roll.  Tic then seizure attacks are a real bear sitting up in a chair because of the whiplash effect on one’s neck.  Everything from the spinal column outward stiffens and voluntary movement diminishes the longer and more frequent the attacks continue.  Things were not looking good at all.

Dr. O entered the room and turned out to be true African instead of Indian as I had surmised by the spelling of his name.  He asked, “why are you here?”  I said I was there for a “medical evaluation.”  He asked a couple more brief and concrete questions and my ability to respond quickly degraded as the seizure attacks became entrenched.  Attempts to speak or move exacerbated the involuntary tremors and shaking; to try and tell him this while my face was becoming constricted and torso was pulling forward in a writhing, flexed posture was quite a challenge.  “I need to stop the exam,” he announced rather emotionlessly.  I encouraged him to wait a moment.  He persisted with something about not being able to do his exam with “all this” going on.  Yeah, I knew that but it was better that he said it and not me.

Two things happened next that amazed me.  First and gratefully, the medical assistant and Dr. O realized that they needed to get me outside for some fresh air.  They brought in a wheelchair and asked me to get into it.  I replied that I could not move!  Through extremely strained vocal cords, jaw, and body posturing I indicated that they would have to help me.  The absolutely crazy part was discovering that they had no idea how to transfer a patient from a chair to a wheelchair!  I guess I take basic skills like transfer technique for granted.  It’s taught in 3-week Certified Nursing Assistant training classes and most workshops on back injuries.  And yet there I was, an occupational therapist with 30 years of experience in a completely debilitated state, instructing 2 experienced healthcare professionals how to get me the heck out of that chair so I could get some fresh air.  Eventually they realized they needed to lock the brakes, flip up the footrests, and so on.  I just couldn’t utter all the details that were needed at the time ya know.

The second amazing thing was what happened next.  Once outside and all the way through the ordeal I kept uttering apologies, thanking them for helping me, and trying to regain some type of control over my physical faculties to no avail.  I simply had to wait it out and focus on just breathing.  I let them know the latter.  It was in the mid 90’s F outside and it felt great in the shade!  Fresh air at last!  At least the air was fresher outside than on the inside!  The two healthcare professionals made a plan for what would happen next since they had other patients to see (but I did not see any in the waiting room) and could not leave me outside the building in a wheelchair alone.  The sweet gal with the fingernails called my husband at work and he was now on his way to rescue me, take me home.  However the plan also included transferring me from wheelchair into my truck so I could wait there and not in their wheelchair.  Using the same ersatz technique, they moved me like a sack of potatoes into the elevated seat of the passenger seat of my truck, turned on the ignition and air conditioner, locked and closed the door, then retreated back to their office.  Geez!

I gradually shifted my tender “sack of potatoes” body around to support my wrenched head and neck.  The pain, the fatigue, the grief reaction, the embarrassment, the horror of it all began to sink in.  I could barely move my arms to wipe the tears and snot running down my face.  My central nervous system was still in “tic mode” so any efforts to move flared the remaining shakes.  I wiped my face with my sleeve anyways.  From here I simply had to ride out the rest of the storm until Steve arrived.  Such is the very inconvenient hell of Chronic Inflammatory Response Illness.  On 1 1/2 hours of sleep from the continuous tic attacks the night before and now after surviving a 3-hour ordeal at this ol’ medical office, my beloved found me an graciously took me home.

When I started writing this account of my day today, I intended to tell a really funny aspect of what had happened.  I guess I needed to vent first.  This was a very difficult experience as you might imagine.  Probably the only good thing that will come out of it will be that there is absolutely no way that Doctor can say that this illness is all in my head after what he witnessed today.  I’d experienced a couple of “MDs” lately who tried to suggest that these seizures are psychological.  I was thoroughly disgusted!  I’d have to be a real sicko to imitate over 200 episodes of wretched and painful pre-tics, tic attacks, seizure attacks, and convulsions in a recent 44 day period that I tracked for my medical record.  Who would do that?  The answer:  no one.  I must trust that Dr. O will write what he saw and nothing else.  No “armchair psychiatry” welcome here please!

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Funny thing happened on the way back to my truck after a medical appointment today:  I started to notice a host of crazy paradoxes despite my wretched situation that are quite humorous if I just changed my perspective a bit.  Here’s where I’m going with this.  Imagine these headlines for my story today:

Female medical center patient coaches physician and trusty assistant in wheelchair transfer technique to keep them from tangling her feet in the leg rests of the rolling and rickety wheelchair.  It’s a good thing that she’s been working in rehabilitation 30 years, eh?

Compromised patient slumped in non-ambulatory state must get back into her mid-size king cab truck loaded with dirt from a garden dig earlier this Spring.  She’s weak but her 2-ton truck is strong for sure.

Collapsed wifepoo recovers in her air-conditioned vehicle while her maximally machismo husband drives up to rescue her in his Dodge Magnum RT speed machine loaded with a 21-foot racing surf ski on his roof.  The dude looks like he could fly the stud mobile into orbit and launch a Tomahawk missile into space from the heavy duty aluminum racks bracing the sleek white projectile.  When she recovers, she and her co-pilot River Bear will fly shotgun in their 24-foot outrigger canoe on the roof one day soon.  Story at 11.  

Yeah, that’s more like it!  What a way to get a story, eh?

So where are we now? Much better than “clean and dry.”

I will never forget Julia.  She had a petite frame, a blondish hue to her gray hair and a sweet disposition even with her eyes closed.  She kept her eyes closed most of the time in those days.  Oh what a sweet treasure it was when she would open her droopy eyelids, worn out from the years of looking at what simply did not matter anymore.  When they did pop open, her eyes were as blue as that of a spritely, young thang yet their life was no longer shining through their looking glass anymore.

Julia let you know what she wanted by the gestures of her contracted and weakened frame.  She held her arms in a flexed posture near to her chest and her legs were drawn up above the seat height of the modified geri chair upon which she sat, semi-reclined.  I don’t even think that her feet touched the foot rests most of the time:  pale pink padded foam to match the waterproof cover of the end-of-life bark-a-lounger in which she sat when out of bed.  Julie must have weighed 90 pounds when I met her.  She leaned to the right then to the left depending upon the position the Certified Nursing Assistants (CNAs) had plopped her in until nap time.  The frail bird of a woman was transferred to bed each afternoon at least an hour after lunchtime, to prevent regurgitation you know.  That is also when she would be checked to make sure her diaper was clean and dry.  If not before her nap, the CNAs took care of her diaper change later for a total of about three times per day.  To keep her “clean and dry” was the charge of the nursing staff of the long term care wing and staffing ratios made sure it that it probably did not happen any more than that for tender ladies like Julia who could not ask for more.

I met Julia while working as an occupational therapist in the rehabilitation unit of this long term care facility.  Periodically we would receive referrals for residents whose MDS (government mandated) scores triggered a decline in the functioning of a resident, requiring a screening assessment from a member of the rehabilitation therapy team.  This particular episode was likely triggered by weight loss which may indicate possible feeding issues.  Or it may indicate improper positioning in the geri chair restricting swallowing, restricting nutritional intake.  She was already seated at a “feeder” half-circle table in the occupational therapy clinic at mealtimes so I had seen her while I was eating my own lunch in an adjacent office.  My role would now become evaluating all of the factors in her decline once the screening assessment triggered an order for an “occupational therapy evaluation” then treatment.

Residents such as Julia are very complex for the reasons that I have already stated.  At some level, you must detach from the emotional impact of working with someone in the last stages of his or her life with advanced medical conditions and dementia.  Then again, when I got to see those blue eyes meeting my own brown eyes for a brief moment in time, I knew that there was more than a long term resident in front of me.  I was looking through those eyes to the heart of a woman who once was someone’s mother, another’s grandmother, a man’s darling and petite wife, and someone whom many once loved.  I loved those connections when our eyes would meet!

I am grateful to say that I don’t think that I ever lost sight of these defining “occupational roles,” the presence of one of God’s children placed before me, when asked to evaluate and treat a person entrusted to my care.  I am grateful for even the somewhat gross experience of feeding a shell of a person (which would have been required through the course of my intervention) even though she would likely spit up some of the pureed foods presented to her.  She probably smelled rank at times after an episode of incontinence when she could not communicate her need to “use the ladies’ room” after dining with the other “feeders.”  Arrrgh!  How I hated that label!

I would have initiated taking Julia to her hospital bed with one of the aides and assisted with “toileting hygiene” even though it was a “feeding assessment” because that care became a part of my job description too:  it would help me to evaluate Julia’s sitting balance/tolerance/posture, level of arousal with gross motor stimulation, righting and equilibrium reactions and more that influence a seated posture for the “activity of daily living” called eating.  How better to evaluate someone than within a real-life activity than to transfer her onto a vinyl mat . . . smelling like feces?  Helping Julia become “clean and dry” before the aides had time to do so after their smoke break always seemed noble as well . . .

Julia’s story had a sad ending.  I watched her continue to decline long after our occupational therapy sessions and staff training were completed.  Julia continued to require maximum assistance with feeding and eventually accepted less nourishment from the aides at mealtimes.  An astute and skilled nurse who loved the patients in the long term care wing determined that Julia had a fecal impaction and notified the family.  Julia had a “Do Not Resuscitate” order on her chart and the family were ready to let her go.  Perhaps the heartache of seeing her endure this end stage of life was just too much for them to bear anymore?  But the illness that resulted in her death was not a major medical event.  It was a fecal impaction.  The end of her life was gross and undignified.   The gracious nurse personally assumed the responsibility of keeping Julia “clean and dry.”  This time the toileting hygiene that was needed was in her mouth . . .

Perhaps you can imagine what I am describing here without having to write another word about it.  Many who knew and cared for Julia were deeply grieved at her passing.  To discuss her quality of life, the anguish of an end-of-life decision, or the crises of the skilled nursing industry is not the intent of this article.  My intent is to tap into the compassion I once felt on a daily basis that brought gratitude for the opportunity I was given to serve others in their time of need.  I did what I could, with what I had, to the best of my ability at that particular time in my life.  Caring for others kept my mind clearer of the whining that can occur for my own limitations, unmet needs, illness, and sorrows.  I don’t have that caregiver role right now.  Even so, I will never forget my experience with Julia and it is good to remember her on a day like today.

No, the hope I had that my pattern of noxious symptoms was changing did not last for more than two days.  Oh well.  I thought about deleting the blog from August 2, 2013.  If I had deleted it, I would have missed reaching deeper into my heart to find the memory of Julia who had taught me so much about life so many years ago.  In the larger scheme of things, two days with a few hours of relief is barely enough time to do anything, experience anything of lasting significance anyways except maybe a trauma of some sort.  I shall hold out my hope for two months!

In the meantime, I will open my brown eyes and see if I can find something else to focus on today.  Six-thirty in the evening is a great time to take a shower in the “p.m. shift” of my daily schedule so I can present myself clean and . . . pretty for my husband when he returns home from more noble activities.  It’s a lovely evening so maybe there is something I can do with it, even if it is sitting within view of the pretty gardens outside my window.  Oh how I wish you could see them!  There’s a hummingbird who is coming around a lot more now too.  Very cool.

See there?  I think I’ve landed in a better place after all.  We are “there” and it is meaningful after all.hummingbird