What becomes normal

Truly none of us are normal deep down inside.  We all have our crazy stuff, some more than others of course (myself included!).  Better for most of that stuff to stay buried you say?  Maybe so.  Then again, why ever lose hope for becoming more whole, getting well?

For some of us, we don’t get to choose what will be normal for us and our loved ones.  This is particularly true when someone gets sick or suffers a serious accident affecting them for say, 6 months or longer.  After 6 months the healthcare profession changes your status from acute to chronic.  By then the “normal” way of life has broken down and often looks a lot different than before the event.  Expectations can change for the future; often people look at you or treat you differently as well affecting many, many relationships.

When living with a serious, ongoing illness or disability, new norms for life get set in motion and become habit.  At some point we have to adapt to the changes in routines, levels of functioning, finances, symptoms, emotions, social dynamics, recreation, work, and more.  If we don’t adapt then we would spend incredible amounts of energy and resources repeatedly trying to figure out how to cope with the changes.  Instead, new daily activities get strung together as new habits, eventually become routines and may even become a new identity as they combine into roles such as “patient,” or “caregiver.”  The phrase, “new normal” comes to mind when such profound changes affect both our lives and the persons around us every day.

We don’t necessarily like where we have landed when it is undesirable.  Sometimes we can’t change things for awhile; other times the changes become permanent.  We do have to make a choice about how we cope with all of it emotionally and in our thought processes including our self-talk.  Will we be angry or find peace perhaps in the promises of our Lord, Jesus Christ?  Will we give up or keep seeking for answers to aid our recovery?   Who will we blame for our lot in life at any given moment?  Acceptance may come or it may never arrive on our doorstep.  However, some semblance of acceptance is key for moving forward.

The process for me in finding a new normal has occurred slowly over 5 years of battling a serious illness.  If I were to summarize the 3 tests noted above of adaptation, emotional adjustment, and thought processes I would admit that I do not like most of the current outcomes.  I don’t like the myriad of mold and chemical-avoidance strategies that everyone in our home must complete every day to minimize triggering a seizure attack episode for me.  But we do them anyways.  I used to cry just about every day and now it’s much less, mostly when discouraged by roadblocks in my care. But I keep searching anyways for answers.  Lastly, I don’t and have never doubted that these daily wretched episodes have a biological (NOT psychological) cause that can be treated.  So I use the tools I have to help myself get well.  I don’t know when or how or why the episodes will stop.  I do believe that one day they will stop completely.

And when the seizures stop I will embrace a new normal.  Things won’t be the same as they were 5 years ago when I was working as an occupational therapist in home health care.  My physical frame is weaker and injured from all of the physical trauma and I’m not sure how much I can get back.  I will try, however!  I can no longer attend our church, contributing to the loss of many relationships that were just getting started when I got sick.  Travelling is restricted to camping in the Tin Can Ranch (on wheels!) for the foreseeable future.  On the flipside, a few positive outcomes include having tremendously increased my computer skills, renewed my interest in entrepreneurship, and desire to support my husband’s growing paddling dealership.  Being his helpmate has given me purpose on my sickest days when making his lunch when I am awake in the middle of the night was all I could do for my Stevers.

What becomes unpleasantly “normal” may not have to stay that way forever (and usually doesn’t).  Those of us who learn to trust in the plan that the Lord has for our lives may find it easier to accept the changes when they come.  We let the Holy Spirit guide us, comfort us along the way.  We keep our eyes fixed on Christ and our hearts and minds soaking up His Word.  We are then better able to let go of wanting things to be as they were and are better ready to grow into the possibilities of a more meaningful, maybe even more fun, tomorrow.  I never thought I would be the Assistant Editor of a national canoe and kayaking magazine nor blog or help an artist friend complete her website.  I just did what I could with what I had, where I was (as Theodore Roosevelt once said) and have landed in a better place in many ways.   Better yet, I trusted in knowing:

Jeremiah 29:11 (NIV)

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.

You will be the first to know about those plans for sure, Gentle Reader.  We have come a long way together, you and me.  I thank you for sharing my journey.  Feel free to share your thoughts about the “normal.”  We are going to be alright no matter which side of the spectrum we are on, eh?  JJ

After TriAdventure Race
Steve and I celebrate his team win at the 2010 Maumee Tri Adventure Race

The Dad that never left

Perhaps it is more of a blessing than anything else that I have more time for reflection these days.  After the double-loads of laundry, medical management, treatment-and-recovery, self care, and various household duties are completed, there are generally more hours than in my past to think about the stuff of life.  On Father’s Day yesterday, I started to notice some new parallels between my past and present.  It went something like this.

I was posting a picture of my Dad and me on Facebook when I realized how his generosity when he stepped back into my life has become an important part of my current recovery from serious illness.  His gift about 6 years ago allowed me to create a garden oasis in our backyard.  Here are two of my favorite areas:

Creating the flagstone patio area required graph paper, a ruler, tape measure, and endless gazing from all angles to make the kidney-bean shaped layout meet the vision the Lord had given me.  In the next 2 years the process continued with a pair of 8-foot custom steel trellises then a “secret garden” area (basically a re-purposed dog pen!).  The planting beds came later as I decided that we needed more privacy from our neighbors behind us and that I wanted to have a garden-view beyond each room of the house.  The bed on the right in the 2nd picture is largely of native plants and a key component in earning a Sustainable Garden designation from our local cooperative extension office.  The aqua custom shade sail was an incredible find from the “sale” page of a company by the same name.  Now that the design is complete the plants have matured and my heart is home.

Dontcha know that my mom was a gardener?  She would hunt down the groundskeeper at the local zoo if needed to obtain a plant start of a specimen she just needed to have in her yard.  Composting, vegetables, a mounded hill, hanging baskets around the hot tub spa . . . she had all the elements that made her heart happy out there in her suburban back

Mom in Spa

yard.  Her creation came together because of the generosity of her parents too.  Some may call it an inheritance.  I call it the chance to create something beautiful from the sorrow of a lost family member.  And I think it’s o.k. to spend some of it to make the process of going on without him or her a little nicer.  Do something that makes your heart happy!

Flash forward 4 years from when the “bones” of our own garden were installed and I am exceedingly grateful for what the Lord has allowed me to design, to create.  Lying sickly on that chaise lounge last summer when it looked like there would be little hope for recovery, brought solace of sorts.  Lying sickly on that same chair this summer after taking treatments that are slowly giving me my life back is bringing hope and the flow of some new creative juices.  My husband, Steve, just smiles a bit when I talk like this.  He knows that could mean a little more trimming around a new garden bed or hauling of something heavy to make it happen.  Oh how he loves me so!  Well I’ll let ya all know how it turns out for sure!

Steve brought me to see this home on our fourth date.  He wanted to know, “if things worked out between us could you see yourself living here?”  Talk about pressure!  I was visiting him in Indiana for the first time from the Chicago suburbs and certainly was not about to make a decision on the spot.  At least out loud, that is!  But I knew that the bush in the front-and-center of the bay window was a Miss Kim Lilac and just like the one I had lost with the townhome when my former spouse left me.  I also knew that the bush next to it was a burning bush that gets a magnificent, fiery shade of red in the Fall and just like the one I . . . well you can see where this is going.  It’s like when I viewed Steve’s profile on Yahoo Personals and saw a picture of him with a radio-controlled airplane that reminded me of the flying competitions in which my dad and brothers flew line-control planes when we were kids.  Of course I knew that the house was a great idea; I just wasn’t going to tell Steve anything just yet.  The home he purchased before we were married became a blank slate for me in remaking so many years that the locusts had eaten . . . . (Joel 2:25)

So I hope you can see how a simple thingy like some flower and vegetable gardens can be so meaningful to someone like me.  The draftsman in my Dad has become the designer in me.  His surprise generosity allowed me to create a living oasis that was an interest I shared with my mom when I became an adult.  Finding a loving place to realize these gifts would come in a way like never before when I found my intended beloved in the arms of my Stevers.  Solace, restoration, and hope were all set in motion regardless of my life’s circumstances according the plans of my Heavenly Dad, my Heavenly Husband; He knew all along the seeds He had planted in my heart long before I could ever dig in the dirt of life myself.  And just as life on this green earth began in the Garden of Eden, so do our own lives thrive in the planted spaces in which we are tilled and turned, watered, pruned, and nurtured until beauty bursts forth in scented color, in hope beyond that which we can see.

How can I be sad about the losses in my life when my Heavenly Dad has always been there with me?  From my garden bench I bid you a “Happy Father’s Day,” Gentle Reader.  I pray that you, too, will live in the fullness of life that grows more grand with each passing day:  a garden oasis in your soul where the One Who knows us so well can make everything meaningful, anything beautiful in the noon day sun or under the shade tree too.  JJ

Dad & me at his trailer

 

 

The times of the day

In my profession of occupational therapy when I specialized in mental health, I often asked my patients to describe a typical day in his or her life.  A practitioner can learn a lot by the presence or absence of structure to one’s routine among other characteristics.  Someone who is depressed, for example, usually starts the day later with a disrupted sleep/wake cycle and has difficulty keeping a meaningful routine.  The days often lack variety, physical activity, creative pursuits/hobbies, social activities, appropriate self care, and regular breaks (for sleep and relaxation).  This can lead to a lack of satisfaction with how a person spends his or her time, an altered sense of identity in the absence of meaningful roles with which to identify, and can even erode the structure needed for at least part of the day that is needed to manage everything from daily habits (self care routines, for example) to emergencies.  The person spends an extra amount of energy just getting through the day and the day lacks enjoyment as well.  A person with an anxiety disorder or an addiction often presents with a completely opposite activity schedule generally characterized by chaos!  Perhaps the mental health issues came first?  Or was it the challenge of achieving a balanced lifestyle in one’s living dysfunctional environment that eventually compounded the issues?  It was my job to figure out the answer these questions and to design an occupational therapy treatment plan accordingly.

I have written on the topic of time management before but not within this context.  And not this personally.  I’ll leave out the assessment forms, graphs, charts, comparison tables, high math, and excruciating detail that would afford me a truly cathartic experience but provide you with a very boring blog post!  Perhaps this summary will be more meaningful than a formal occupational therapy evaluation?

This is what it is like to center one’s life around recovering from a serious illness.

Trying to get enough sleep to function:                   10 hours per day

This includes time that feels wasted trying to fall asleep, waking and go-to-sleep convulsive episodes, recovery time from the latter of those two, ruminating if I should take nap or not during the daytime (increase the hours if I am too chilled/sick to make a decision), waking up in the middle of the night to use the bathroom, additional episodes trying to go back to sleep after getting up, waking up when my beloved is snoring post exhaustion from caring for me, more additional episodes trying to go back to sleep, bedtime preparations (donning the blue light-blocking glasses to foster melatonin production, experimenting with bedtime supplements, arranging pillows and other positioning devices to minimize pain, pre-heating the mattress pad heater to minimize the shock of cold sheets that can trigger seizure attacks), preparing my emergency “lunch” bag of waking supplements/water/snack (to manage blood sugar drops, dehydration, and remedies that sometimes help), struggles to enjoy nighttime snuggles with my beloved husband until the episodes start, and most definitely:  talking to Jesus!

Medical appointments and treatments:                   3.5 hours averaged per day across the week

Medical activities include appointments with my Family Practice Physician/Chiropractor, other Doctors and professionals, IV antibiotic treatments at the hospital 3x/week and recovery time before I can go home, transit time, scheduling, communication (phone, internet, text, and messaging), coordination of transportation when needed, various lab test procedures, detox treatments, pain management-related services, and preparing all food/records/water/supplements/detox materials needed for each appointment.  “Treatments” also include various methods of detox; foot baths; salt/mineral baths; skin brushing; liposomal, topical and oral supplements; updating my daily treatment log; medical filing/billing; special nebulized and dissolved supplements; and an occasional use of essential oils.  (For the past month I have had an average of 7 medical appointments per week!  Eeeek!)

Food and nutrition                                                              3.5 hours per day

Includes making dinner and lunches for my husband daily; making separate, special diet for myself every meal (!); shopping/ordering/freezing/processing groceries from 7 or more sources; planning (research and list-making); portioning-and-freezing (since no cooked food can be stored for more than 24 hours); recipe conversions/managing recipes; updating quick reference sheets of current protocols to keep myself sane and moving forward; and symptomatic adjustments as necessary.

Research and learning                                                     1.5 hours per day

Online medical research dominates my thirst for both information and recovery.  I also include here the review of professional literature and various publications, blogging about various health topics at http://www.justjuliewrites.com, and the investigation of various treatment approaches and providers via a variety of outlets including social media.

Socialization                                                                          2 hours per day

Whether connecting with my really smart and beloved spouse (Steve), texting/messaging/emailing friends, talking with friends or family on the phone, sending someone a card, or the rare chance I get to meet with someone in person, socialization is a highlight of each day!  Skyping with a couple of gals regularly for prayer, scripture, some laughs and tears has become a treasure!  Social isolation plagued me for about 3 years of these past four years of illness when I had to stop everything:  Bible studies, church activities, womens’ retreats, visiting, most travel (when all of our family is out of State), etc.  For a long time my most regular communication outside of our home was largely limited to superficial chats on Facebook!  Many people have left my life . . .  Thank the Lord for those faceless acquaintances on Facebook who were there when I was awake in the middle of the night!

Christ-centered activities                                                  1 hour per day

Here’s another improvement in consistency that includes listening to our pastor’s messages online (since I cannot be in the building due to sensitivities), reading my Bible, prayer, some blogging, and the reading of inspirational Christian publications (ministry newsletters, etc.)

Extreme avoidance activities                                           1 hour per day

Extra loads of laundry, additional cleaning, wiping surfaces with a diluted ammonia solution, management of various masks, preparation of barriers to minimize exposures in public places, nasal washes, and a myriad of other activities not reflected above.

Physical activity                                                                  .75 hours per day

This is the newest addition to my daily routine and comes in the form of more regular housework, walking our dog once per week, 10 minutes on a stationary bike once per week, and some gardening.  This figure is divided by the total over 7 days:  lately I can move around a little longer about 3 days per week for more than a few minutes in a row, yeah God!

Self care                                                                                   .5 hours per day

The time spent caring for myself has only recently increased to improve my appearance sometimes.  It feels good.

Recreational and Creative Endeavors                          .25 hours per day

Herein lies my greatest weakness and greatest area of improvement since starting treatment for chronic Lyme disease.  Until now there hasn’t been much fun:  sewing was limited to mending (!); I couldn’t tolerate listening to music, was too sick for kayaking with Steve (my River Bear), and reading consisted only of my Fine Gardening magazine, my hubby’s war-hero novel, and a few monthly local gardening newsletters.  I sold my jewelry business last Fall and my creative juices stopped as the illness got worse.  Maybe this summer I will actually be able to work in the public garden for which I have volunteered?  Stay tuned!  Things are looking up!  This past week I was able to work in our own garden for 3 hours:  a very physical activity as well as something that I love!

So putting on my occupational therapy hat for a moment here is my brief O.T. Assessment:

The loose schemata above reveals my obvious need for more physical, non-medical self care, in-person social, and recreational/creative activities to achieve a balanced lifestyle.  Incorporating other people into the ones that I am able to pursue will probably make everything more fun and meaningful in addition to increasing social time.  Success will depend upon the ability to avoid noxious exposures until my reactivity goes down; gratefully we are entering into the warmer months here in the Midwest so doing things outside is more possible.  As I eventually spend less time in medical and medical research activities, I hope to pursue more of a primary occupational role either by developing my Two Step Solutions business or returning to traditional employment in a suitable environment.  Volunteer work perhaps at our local Extension Office may also increase.  Keeping my occupational therapy license current, continuing to learn, developing some internet and e-commerce skills, and writing, Lord willing, are strengths that may add to the possibilities without too much additional retraining.

****************

I am grateful to my fellow sojourners who have kept me sane when things have been out of whack! I look forward to finding a way to give back to them and others; perhaps this would be by sharing how the Lord crafted this story or simply living a meaningful life after serious illness.  I will definitely take the time I need to make a good transition knowing that there will be some good days and some that are less so.

Overall, can you hear the hope in my voice, Gentle Reader?  Yup.  Lord willing, I am getting well!  JJ

When there are no words

“Look up.  Look waaaaaay up,” were the words of The Friendly Giant in 1986.  This American children’s television host invited the viewer into his miniature living room where he pulled out a chair just for you by the fireplace.  Then an image of his fake leather boots appeared 10x the scale of the scene on the television as he invited little Sissy or young Bobby to follow the camera up to the smiling eyes waiting to tell a story, waiting to introduce you to a host of characters.  Rusty the Rooster was a silly-looking puppet yet their banter held my attention all the same.  Even though by 1986 I was not a kiddo anymore!

We often look up to see the wonder beyond us:  gazing at the twinkling stars so visible in the crisp Fall air or maybe oooing and ahhhing at the bright ornaments adorning the department store Christmas trees already on display before Thanksgiving.  There is something magical about a beautiful sight just beyond our gaze, just above our smaller human frame.  When that object is but ordinary the wonder may be less yet the opportunity to reflect may be just as profound too.

The ceiling above my bed of sickness holds much thought these days.  On a Monday I might see a simple popcorn ceiling in the same building contractor’s white paint of every home built that very year.  A few days later it may be the seam tape of the electrical lines painted to match the composite panel lining the roof of an aluminum travel trailer.  Two months ago it was a bright blue shade sail floating softly up, gently down above my patio chair when the weather was still sunny and warm.  Such simple forms that served to give me pause from the mayhem of the hours that dragged on before . . .

shade sail patio summer 2015

Times like these are best spent dwelling in the presence of the Lord.  No words fill my mind in those kind of moments.  The tears are already spent; the energy almost completely drained away.  Such is the aftermath of uncontrollable seizure attacks that plague my weakened frame day after night after day for hours without end.  The pattern continues despite new anti-microbial treatments, tests, consultations, prayer, tears, strategies new and old.  New pains come and find a way to stay.  There is nothing left to say.  There is nothing left to do but to dwell, I guess.

Even love can be like this I suppose when it hurts so bad and you still can’t seem to shake the pain away.  All you do is focus on the form that you knew or still know that stands in front of you when only a blank slate emptied of your future together remains.  Turn to the left, turn to the right, stand up, sit down, and unlike the cheer song at the football games in 1986, there is no fight!  Fight!  FIGHT!  when love goes away for good.  Oh how I long for the familiarity of the pains I had known long ago.  It would be so much easier to handle than the emptiness of my heart this night.  Yup.  The joy is gone!  Gone!  GONE!

So what’s a middle-aged gal to do in the middle of the night and there is nothing to look up to anymore?  When I have written more words from every angle that my heart can imagine and no new inspiration comes to fill the page, gosh, what will I do?  Not much, really.  Just wait I guess.  Tomorrow is a new day and it will be here before you know it.  Maybe something good will happen, eh?

In the meantime, won’t you hang in there with me?  Here, I have pulled up a chair for you too Gentle Reader.  The Friendly Giant is now known as Immanuel and has a special story to help us end this little time together.  It’s a great read for a bedtime story at any time of the day, I promise.

I do hope you enjoy it.  JJ

Psalm 121

It Just Doesn’t Matter that much anymore

What others think of me, especially online, used to concern me to the point of scrutinizing every typo and punctuation mark!  Tell you what, it just doesn’t matter that much anymore (IJDMTMA).

Keeping in mind the reason for every significant action in my life so I can justify it, rationalize any lapse in judgment, or simply give me another reason to criticize myself occupies less of my mental space these days.  It takes too much energy.  Any other reasons would go against what I just said!  IJDMTMA.

Cataloging significant records that document the divorce I endured, the major court case I lost, the medical conditions that have come my way, too many artifacts and photos of special events, and purchasing new file cabinets to keep track of these events and more (I have 15 packed drawers in various lateral files, desk drawers and file cabinets, plus quite a few plastic bins around!) involves more-purging-than-storing these days.  If I need it that badly surely I can find it online somewhere, right?  IJDMTMA.

I now live in a town where the cost of living is so affordable that a few people I know have a second home just to store their stuff!  Or folks rent storage spaces in addition to their primary residences (and I am not talking about those living in an apartment or condo!). Gratefully my husband, Steve, and I live in a modest home that requires us to purge stuff periodically!  We don’t want to keep accumulating stuff!  This Christmas I will need to discard numerous Christmas decorations that were up before we remediated our home for mold damage.  The most treasured items will be consolidated into one bin.  I’m going to have to get tough and proclaim:  IJDMTMA.

Similarly, musty memories, painful flashbacks, grief beyond what most must endure, and the drag-me-down burdens that comprise life’s worries have come to the surface with the wretched convulsive episodes of the illness I have been battling.  I simply could not stop the process if I tried.  Perhaps these came as a consequence of a few illnesses that have affected my brain?  No one knows.  What I do know is that If there are to be any redeeming benefits to the nightmares of these past 4 years it must include the involuntary healing that came as these demons were set free.  Yes, the seizures helped release some bad stuff going on in my head.  Carrying this mental baggage has gone down immensely along with the emotional pain.  A different kind of healing has occurred as a result.  Joyfully, IJDMTMA.

The losses of what I once held so dear (i.e. many relationships, my occupational role of 32 years, more financial freedom, certain activities, physical fitness, and the ability to function normally) has been heartbreaking.  But just like learning to let go of other people, places, and things in my life, these intangibles had to be released to the care of my Heavenly Father as well.  At this point I do not know if any of them will come back.  Amazingly I have discovered that I still can have some good moments, make new friends and memories, have everything that I really need, and experience love like never before even with a total life makeover.  To the need for having things be just so I say, IJDMTMA.  Life goes better when held more lightly in the wonder of the moment . . .

How do I convey that “IJDMTMA” is a relatively peaceful, not a sad or angry place in which to be?  I simply have to be here right now.  This attitude has become like a protective coating to keep me from falling apart, from losing what is left, from thinking that my Jesus has abandoned me. He has not!  IJDMTMA is the construct into which I must retreat lest the grieving of what is no longer here overtakes me and blinds me to the goodness that still remains.   In Ezekiel 3:8, the Lord shows His prophet that He will indeed allow him to become “hardened” so that Ezekiel may not lose heart as he carries out the work of ministering to the nation of Israel still in exile.  Wow!  A God-ordained rebellion of sorts will help keep Ezekiel from discouragement.  A toughening will help him and his gifts to continue to be used for God’s glory.  Yes, I want the will and glory of my Lord too.  In the cocoon my Lord has woven for me I can say to all that other stuff:  IJDMTMA.

It just doesn’t matter that much anymore that things aren’t the way they should be or used to be.  I am still here and that matters to me.  Much goodness still surrounds me as I look around this room where I am sitting and see the pictures, handiwork, awards, furniture, and records that tell the stories of Steve and Julie.  Cool beans.  Better yet, just look into our eyes or sit and chat a spell to see more closely what real life looks like in those who are grounded in trusting the Lord for each hour of the day.  It isn’t perfect.  We don’t want our lives to be perfect anyways.  I have a sense that maybe yours isn’t perfect either.  It’s going to be o.k. for those who are in Christ Jesus.  One day soon we will be in His presence and the real stuff of life will be revealed.  And with His glorious light shining all around us we will be with our Lord and Savior for always . . .

Coming to faith in Christ does matter to make this all possible.  Dwelling in the presence of the Lord for all time will bring lightness of heart for all of eternity.  I will be there.  Will I get to see you there too Gentle Reader?

I’m tired.  Goodnight all.  JJ  Ezekiel, harden not your hearts, suffering, endurance, it don't matter to me, what matters most, Christian, marriage, overcoming, chronic illness, chronic pain, hope, trust, the Lord