A Different Kind of Life (14 Month Update)

September 19, 2011 by  
Filed under Our Recovery Journal

On the way into work today, I decided to try something different and turned the radio to something mindless.  My fingers perused the dial and ended up at the local top 40 station.  Like most morning shows, the DJs focus on topics that may be interesting but are often of little consequence in our daily lives.  They laugh, joke, and discuss celebrity woes and the ironies that famous people encounter as they go throughout their pop culture lives.  The nasally sounding voices of the DJ’s continue their rant for three hours every day on a variety of topics that their listeners find amusing about everyday life.

This particular morning the DJ’s were discussing which new TV shows they would watch each night this season.  The basis of the discussion was that it was important to decide which shows to watch right away in order to maximize television enjoyment for the upcoming season.  The DJ’s went through tonight’s network schedule in much the same way that a college student goes through the list of available courses for next semester, weighing the pros and cons of the shows in each time slot in a quest for the perfect evening on the couch.

This discussion provided a stark contrast to the everyday life that my family currently lives.  With a wife that needs constant care and three young children, there is simply no time for nighttime television or mindless banter.  Evening hours are filled to the brim with all the chores and duties that turn a house into a home.  Every single day it is a challenge to make and clean up dinner, organize the house, clean, shuttle kids to activities, and give the baby all the attention she needs.  Although Jess has wonderful ladies that come to the house all day and help her manage the daily routine, the amount of work that still needs to be done each evening is simply greater than the time allotted to do the work.  Just as one might loosen a belt after Thanksgiving dinner to allow room for their expanding stomach, the ever expanding number of tasks that must be completed each evening contribute to a bedtime that is pushed back later and later.  As the week goes on, the clock creeps a little later each night when my head hits the pillow.


Meeting New Challenges in the Home

I am not the only one functioning at 100% of capacity.  Our girls have picked up the slack in their own ways as well.  Pitching in to help the greater good is a necessity now that they have internalized and embraced their roles as daughters in a unique family.  Helping get the baby out of the car, into the stroller, and pushed into the store a task that is now automated as dad is preoccupied with the more pressing duty of helping mom walk in safely.  From their perspective, they do sometimes get yelled at unfairly for not being able to meet the demands of dad’s new type-A time schedule.  They have much better success when they can help out on their own time and of their own volition.  The sight of dad doing dishes, sweeping, and cleaning the house is a trigger that often spurs the kids into productive and positive action.  While fights are common when they are picking up their room as a directive, it is amazing that two competitive sisters can decide to work together in perfect harmony when they set their mind to it.  The feeling of pride that they get from making a their messy room clean can be seen welling up in their chest as they show off all the work they’ve done… the look of satisfaction on mom and dad’s face all the motivation required for them to tackle this task.

Throughout the past 14 months, I have tried every possible tactic to motivate Jessica.  Much like the kids, she does not enjoy receiving orders or directives, but like all mothers she is motivated by an undeniable appetite for pitching in and maintaining her role as the center of the family.  The best way to get her moving is to simply go about the business of completing daily duties and keeping up the house.  Like a deer that hears a twig snap in the distance, Jessica perks up as soon as she notices work being done around her.  Her mind begins to conjure up ways that she could possibly help.  After some thought, she verbalizes these ideas and is then included in the clean-up process.  Doing with the dishes and sweeping the floor are activities that require assistance and actually slow down the process.  I chalk this up to an investment of time into her therapy.  Other activities such as folding clothes, managing the baby, and helping the girls organize their room contribute to our well-being and free me up to focus on other tasks.  More importantly, success in these activities plants the seeds of self-efficacy that lead to feelings of accomplishment and worth.  These seeds are powerful arguments in the ongoing debate in her own mind concerning her worth.  The tangible evidence of work completed and the feeling of satisfaction she gains in these tasks are stepping stones in her continued quest to procure the maximum amount of recovery from both her mind and her muscles.


Measuring Progress

One fact about major recovery is that it gets more and more difficult to notice the gains each month.  A patient who walks with a cane will always seem to be walking slowly, and improvements can often go unnoticed as our expectations of the patient automatically rise as the months go by.  Walking with a cane at 1.6 mph seems slow as compared to a healthy walker, and it is difficult to get a feel for just how far she has come.  Improving from less than 1 mph to 1.6 mph is a major increase, but this increase is hard to notice because the gains occur so slowly.  There is much to be learned from keeping track of measurable results and using them to chart the progress of the patient.  In addition to looking at physical progress, keeping a journal of the mental and emotional psyche as they live out their daily life can also provide valuable insight.  Having documentation of the details of each day like having a bright light that can reveal new ideas and potential positive changes as life moves forward.

The walking numbers in the previous paragraph are from Jessica’s journal.  She first began walking on the treadmill with a harness and a helper who would assist her in ambulating correctly.  Many weeks later, she shed the harness and has subsequently minimized the need for supervision of her gait.  In addition to walking the treadmill at therapy, she has also gone to the indoor track a several times during the last three months.  Her first day at the track resulted in a one-lap walk that took 12 minutes with the cane.  It is now three months later and she can now clocked times of between 6 and 7 minutes per lap.  At therapy, she continues doing the treadmill more independently and is now increasing her speed a little each month… but it is still hard to determine whether these gains have translated into tangible differences in daily living.  That is why it is so refreshing to have some evidence of her continued progress.  Jess has never been a gym rat, but she was always a determined individual who was able to set goals and strive for achievement.  Seeing the continued improvements in her arm, leg, communications skills, and language arts abilities make it just a little easier to wake up the next day and walk into therapy with a positive attitude.


Life after Stroke

It is a well-known fact that the damage caused by a stroke often manifests itself in physical deficits over one hemisphere of the body.  Whether it is the left or right side, both the arm and the leg are often affected and the entire side of the body needs rehabbed.  While deficits in the leg can often be hidden by wearing long pants, stroke victims are probably best known for having stiff shoulders, elbows, and hands.  They often have trouble raising their arm over their head, maintaining smooth motion when using the elbow, and handling objects with the affected hand.  Even with a long sleeved shirt, one common and visible characteristic of stroke victim is a tight hand and stubborn fingers.  Turning a knob, manipulating a set of keys, and handling money are everyday activities that reveal the lingering stiffness left behind by the stroke.

Jess is now working on fine-tuning her arm movements.  Relearning how to use her right arm and hand has been an experimental process where she must concentrate on each individual muscle and attempt to move them in patchwork unison in order to complete a task.  Like many stroke victims, Jess has relearned these movements without maximizing the use of her elbow.  Charlotte now enjoys eating foods that she can pick up and put in her own mouth.  However, too much food placed on her tray at one time leads to throwing, dropping, smashing, and playing with the food.  Jessica is often charged with the duty of feeding the baby, and this activity is a good one to demonstrate the gains she has made with her arm.  Small changes like picking up a few grapes and extending the elbow (instead of turning at the hips to allow the elbow to remain slightly bent) to place the food on the tray are now a big focus of her therapy.  It is a huge benefit to have knowledgeable therapists that can identify and address lingering weaknesses such as a lack of elbow extension.  Every little nuance that allows her to move more naturally or more effectively is a gift of one more piece of her pre-trauma self.  These small gifts have accumulated bountifully as the trajectory of life more closely resembles the life she desires with each and every new gain.

Jessica has now completed fourteen months of recovery, but it is easier to think of the recovery as two months plus one year.  This type of thinking leads to constant reminiscing about her life on this day exactly one year ago.  At that time, she was living in a nursing home and getting the majority of her food from a feeding tube.  She had an extremely hard time convincing her mouth to communicate her wants, needs, and feelings accurately.  One year ago, she was unable to use her right arm or leg.  Her therapy was reminiscent of an episode of “Sit and Be Fit.”  In fact, Jess was physically capable of much less than the elderly people on that show.  Fast forward a year and life is still difficult yet it is so much better.  My wife now lives at home with our family and is looking and doing better than she has at any point during the past 14 months.  Life today is decidedly different than it was before the “event” but I can’t say that life is bad.  Our entire family has learned to value each of life’s successes and interactions with an appreciation that many people never attain.  Life goes on and we all pitch in to make it through our day… and every month things get a little easier as Jess continues to get stronger.

While Jess and I are often amused by the mindless banter of morning show DJ’s, it is unlikely that we will ever have an evening that resembles their recommendations.  Instead of focusing on how best to spend our leisure time, our evenings will be filled with the activities that are necessary for survival and well-being.  Although the lack of free time can be stressful, the feeling of accomplishment that comes with a life of therapy has led to some of the most rewarding days we have ever lived.  Seeing how much friends and family are hoping and praying for our success is a great motivation for everyone involved.  Knowing that God has endowed Jessica with the willpower to continue working hard every day makes life worth living for us all.  Thanks for all your prayers and support and I look forward to many more months of putting ink to paper to share her continued successes!


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One Response to “A Different Kind of Life (14 Month Update)”
  1. carole auch says:

    i am constantly amazed at jessica and your entire family and i stand in awe of what a wonderful God we have. God’s plans are so often a mystery to us, yet i know that jessica’s life, and the story of your family’s adjustments are so inspiring that i am ashamed of my own complaints. i pray that jessica’s progress continues at a speed that inspires all of us.
    prayers and blessings to you and your family. carole

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