Permanence Sets In (26 Month Update)

September 16, 2012 by  
Filed under Our Recovery Journal

The gurus of personal development insist that tomorrow can be different than today.  They teach that changes in behavior can result in a more efficient and rewarding life.  We are told that if we can enact positive change in our life, we can transform ourselves into something great.

These experts insist that small tweaks in our attitude are the key to success.  If we just reorganize our priorities, then we can reach all of the goals that we set for ourselves.

The experts know that most humans are so set in their ways that they are incapable of change.  They understand that it takes a massive amount of motivation to make the kinds of changes that affect a life.  People who are living a normal life may never find that motivation.  While their life may not be perfect, things move forward at an acceptable pace.

Motivation comes to us during times of crisis.  When things are at their worst, change is no longer an option… it is a necessity.  When our current lifestyle is not suited to the challenges before us, that is the moment that we embrace the concept of change.

Throughout a stroke recovery, every day is a crisis.  Every hour contains situations that reinforce the reality of new limitations.  These limitations are large enough to affect one’s entire life.

A life of doubt is something that a normal person might never understand.  Most of us never consider the potential dangers of a trip to the bathroom.  We do not dread activities like cutting a steak or placing a glass into a high cabinet.  Our days are not filled with fear and dread, for we are able to complete our daily tasks without dwelling on the details.


A Post-Stroke Life

Life after stroke is a life of doubt, but it is also a life of hope.  A stroke victim lives with the limitations of today, but dreams of the function of tomorrow.  There is always the possibility that things will improve.  Always hope that today’s deficiencies can evolve into tomorrow’s function.  It is a life of wondering why this had to happen and when it will ever get better.

Everything is different now.  The mind forgets what it once knew.  The body is unable to perform tasks that once seemed so natural.  Time slows down to align with the new reality of brain and body.

Recovering is like trying to pry open the door to hope.  Increases in function may take days, weeks, or even months to acquire… and when gains are made the door is cracked open just a little more.  There is always the chance that the door might open all the way… always the chance that one might cross the threshold of freedom.


When Recovery Meets its Ceiling

The hope of recovery must one day reconcile with the reality of disability.  Eventually everyone’s trajectory levels off to the point where it is easy to guess how life will be days, weeks, and years into the future.  Eventually we all must accept the limitations of today and learn to live with them.  Oversized dreams are replaced with realistic goals.  Instead of running a mile, one might strive to navigate the entire grocery store.  The goal of walking the dog may be replaced with that of simply walking out onto the patio.

After 26 months of recovery, the days of large increases are long gone.  We have learned that today’s goals can better be described as “fine tuning.”  Although our recovery has outdistanced everyone’s expectations, life is still far from perfect.  Jess is unlikely to regain the mental capacity to manage our finances or plan a family trip.  Physically, she will life the rest of her days with a fear of falling.  Each mealtime a reminder of the frustration of using fork and knife.

Even after reading many of these journal entries, you may not be able to completely empathize with her lifestyle.  While the functional deficits are frustrating, the toughest part is knowing that we are nearing our functional ceiling.  Jess still needs someone there as she gets out of bed, walks to the car, and sits down at the dinner table.  The active young mom who juggled work, home, and kids now needs assistance just to manage her own life.  She has to put away her pride and be willing to ask her young daughters to do for her what she wishes she could do for them.


Adjustments in “Normal”

The other day, Jess asked to go to her daughter’s soccer practice.  This meant that she would be driven to the field and helped into a chair.  One daughter kicked a ball as the second looked after the third.  Instead of helping her family, it was her family who needed to help her.

While she has increased her sphere of influence in the house, the danger of navigating the world outside still outweighs the potential benefits.  Jess is now a forced observer at family activities.  Sitting there and watching it all makes for slow time, but slow time is now all she knows.  There is no urgency left in her stride or her demeanor.

When you have lost so much, it becomes even harder to be happy for what you still have.  The difficulties of dealing with traumatic brain injury make it seem like everything has been lost.  In many cases, the victim feels like an anchor that prevents the family boat from ever leaving safe harbor.  The emotional drain of such a life is immense.  For so long, recovery seemed to be a bridge back to a normal life.  It seemed like the sky was the limit… it seemed like things could return to the way they were before.

The harshest truth of stroke recovery is that there is no normal anymore.  There is no moment when you will wake up and be truly happy and satisfied with who you are and what you can do.  Even the strongest survivors are torn between what life is and what it could be.  The best among us carry the cross of the inherent unfairness of disability.


Realizing Permanence

Most people have a whole lifetime to come to grips with the concept of permanence.  It isn’t until our best days are behind us that we realize how great we really had it.  Not until we are in the twilight of life do we slow down enough to step back and consider how we have lived it.  Our mind is not prepared to ponder the decisions of our youth until it is too late to undo them.  We don’t realize how good we had it until our body begins breaking down.  The world transforms from the one we were so comfortable with in our youth into one that begins passing us by in our old age.


“It isn’t until our best days are behind us that we realize how great we really had it.” [Click to Tweet]


Most people have so much time to transition from a robust life of full function into the decline of old age.  We expect that the reflection in tomorrow’s mirror will look just like the one the mirror shows us today.  Experience tells us that most people are able to manage their lives until their body and mind begin to break down.  We expect to have years to get used to aches and pains that come with aging.

Sometimes in life there is just no time to say goodbye to the past.  When a tidal wave of fate washes over the present and deposits you into the future, there is just no time to tie up loose ends.  No chance to accept or understand what just happened.

Then the next day comes and new realities are realized.  After a trauma, it may take awhile to get used to this new way of life.  For a severe trauma like ours, it could take 2+ years to take retake the reins.  Wrapping one’s mind around new realities requires reflection.  In our case we still haven’t completely accepted the permanence of our situation.


Focusing on Living

Jessica has overcome more obstacles than anyone else I have ever met.  The strengths she possessed before her trauma have carried her through to this point.  A willingness to work hard and accept instruction has propelled her to greater physical gains.  Even more important than physical resilience is emotional stability.  Dealing with severe limitations is a frustration that can take ownership of our life.  It takes a special kind of person to deal with it gracefully, and it is in that realm that Jess has truly shined.

One of my favorite movie quotes comes from the Shawshank Redemption:

“He crawled through a river of sh*t and came out clean on the other side”

This quote defines our life for the past two years.  Despite all the physical and mental difficulties, we remain happy.  In our world of emotional baggage we strive for contentment.  Although the day to day is more tedious than I could possibly describe, every effort is made to focus on the positives.  The focus is gradually moving from “therapy” to “living.”  After 26 months of ups and downs, we’ll take “living” every day of the week.


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