Uncertainty Begins to Fade – (9 Month Update)

April 12, 2011 by  
Filed under Our Recovery Journal

Charles Dickens once began an entire book with the phrase “it was the best of times, it was the worst of times.”  That is pretty much how Jessica’s life has been not only for the past month, but for the past nine months of her recovery.  The frustration of the daily grind and the continued realizations of her limitations have been a constant presence.  Daily struggles have turned these days into some of the worst she has ever lived.  At the same time, each day that contains a positive step forward is a cause for celebration like we had never experienced in the “before.”  The moment that step takes place a moment of hope that turns the entire day into an amazing one.

Jessica has had more significant (positive or negative) days during the past 9 months than she has had in her entire life.  The drama of amplified successes and failures is draining for her, myself, and the kids.  The pace of daily life has slowed to a crawl.  Each day contains a brand new sequence of challenges.  Many of the hardships of the daily grind are different than those of the day before.  The day rolls along as we attempt to solve each problem in our path.  Her mind works like that of a child putting together an unfamiliar puzzle.

 

A Glimpse at Possibility

Early on in the recovery, it was comforting to think that she could continue recovering all the way to perfection.  The endgame was hidden behind an impenetrable wall of clouds and we could dare to dream that anything was possible.  Early on, any result was feasible, including

  • a BAD result of remaining in a coma indefinitely or waking up but needing nursing home care
  • a GOOD result of moving home and living a normal life with her family.

At the nine month point, the clouds have thinned out quite a bit.  It is now becoming possible to see a glimpses of a post-recovery Jessica though those clouds.  Recovery to the “complete” version of herself is no longer on the table as far as a potential outcome, but Jess has it within her power to recover to the point where she can enjoy and appreciate life.  She is still making gains on her own, but some of her progress is now due to family and friends simply adjusting expectations and routines according to her needs.

 

More Therapy and a Cane Upgrade

She continues to lead a therapy-driven life.  Jessica is chauffeured to outpatient therapy three times each week for half a day of walking, lifting, manipulating, and thinking.  Her main goal at this point is to be able to read and write at an adult level.  Learning this skill is much harder for her than I imagine it was the first time.  Lucky for her, she has a 2nd grader and a kindergartener at home to read with her constantly.  Jess is doing well learning letters and sight words, but at this point she has a long way to go on phonics, logic, and cognitive tasks.

Jessica also graduated to a new cane during the past month.  Still a four point model, but with a smaller base than the one she used previously.  I picked up the cane at a medical supplies business that I had driven by a million times but never noticed… identifying this building and doing business inside just another reminder that our life is now changed.  We now understand how canes and other devices can make life just a little bit easier.  Errands such as this serve to remind us that life won’t ever return to exactly what it was before.

Jessica is reaching higher, walking farther, and asking for breaks less frequently at therapy.  I am pleased to report that she is progressing toward being a steady walker and is on pace to get there before Charlotte does.  I am glad that I journal her progress because the daily gains are unnoticeable but the monthly gains continue to be significant.

 

We’ve Found the Enemy, and It is the Pills

Have you ever skimmed an article and decided not to read it?  Ever come upon a webpage and immediately hit the “back” button.  When writing updates here, it is often difficult to translate a mundane life of slow improvement into something worth reading.

Some aspects of our life reveal themselves as constant frustration.  Since their influence is small, these items rarely get mention here.  As the months go by, the ebbs and flows of recovery life allow for changes in the frustration level of different challenges.   Frustrations that seem to be under control one day can magnify the next.  As a frustration moves from the supporting cast to a lead role, it can wreak havoc on the patient, the family, and the recovery itself.

In recent weeks, the process of taking medication has become one of these details that has magnified.  A regimen of 10+ pills per day is no picnic.  The additional side effect of nausea has turned this regimen into quite an obstacle.

Ever since she was a girl, Jessica has been unable to swallow pills.  Now that she is taking them four times each day, our primitive delivery method makes for a frustrating life.  This method begins with a hammer that now resides in the kitchen.  Pills are put into a plastic bag and the hammer does its job.  The sound of hammer striking countertop might not have meaning to most people, but for Jess it is the beginning of the countdown to pill time.

Pills are ground up and inserted into yogurt or pudding.  It would be great if the pills had no taste.  Unfortunately they taste bad… really bad.  Bitter yogurt is bad enough once in a while.  The taste does not improve with the second, third, or fourth helping.

Ingesting the pills is just the beginning of the nightmare.  The bad dream continues past the struggles of eating the yogurt.  The entire experience of a meal, pills, and yogurt often causes Jess to throw up.  Sometimes this occurs while trying to finish off the pills.  Other times it happens in the minutes that follow.  Uncontrollable vomiting is an awful experience.  In addition to the physical pain and annoyance, Jess also loses the benefit of her medications.  For a patient recovering from serious injury who is trying to put on weight, throwing up is a double whammy that works against eating well.  The sick feeling lasts for house afterward.  She cannot work out the rest of the day and often wants to go straight to bed.

Life would be smooth sailing if she didn’t need medication.  The ironic thing about pills is that they often make life worse.  While they are specifically prescribed to help her specific symptoms, the mental and emotional drain of the struggle can ruin the entire day.  Consuming all the daily pills is a big challenge, but Jess continues to fight through the nausea to a place where the pills help her daily routine more than they hurt it.

 

The Journey Continues

When this all first happened, the future was too cloudy to even guess at where we would be at this point.  We did what we thought was best and secured all the support we felt was needed.  The meals that were delivered, visitors who kept her company, and volunteers that helped free up our time were invaluable as we began this journey.  It was they who allowed us to maintain sanity until the clouds thinned and we could identify the possibilities.

I am grateful for all the help that we have received.  For the unseen thoughts and prayers, the cards and flowers sent in support, and the meals that showed up on my doorstep.  We ate much better than my own cooking would have allowed, and having a break from food prep provided my family more time to focus on Jessica.  Cards of love and support helped her smile on days where there wasn’t much else to smile about.

Although our family has come a long way, we still have a way to go.  We are becoming more independent each day and growing into our new routines.  When a family member is down, a normal life requires that the rest of the family pick up the slack.  Each improvement that Jessica makes means that she can do more for herself.  Each gain translates to a little less slack for the family to pick up.  We will need less assistance as we continue to develop our own independence.  I look forward to the day when we might be able to survive without asking for anything at all.  My hope is that we can do everything in our power to make that day a reality.  I am confident God will be watching over us and enable us to get the help we need to allow us the additional time to focus on our main goal for the year… securing the best recovery we possibly can.

 

 

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