Sunday, October 7, 2012

living with chronic illness


I am posting this passage written recently on a separate thread I normally reserve for a specific audience-those coping with chronic pain.  I think that it merits a repost on the main thread.
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It is difficult for people who do not have chronic illness to cope with the lifestyles of those who have disabiling conditions.  One of the challenges for people with chronic illness and those who love them is coping with the impact of the unpredictable and disruptive nature of illness.  We may miss out on family functions, may miss work, may find it difficult to keep appointments with doctors as well as a host of other commitments to friends and family.  We just aren't as dependable in some ways as we would like because of the somewhat spontaneity of the symptoms.

I absolutely feel grateful NOT to have a terminal illness.  I am grateful for the 'up' days.  But I am also keenly aware of the setbacks, the missed opportunities, and disappointing family and friends.  It hurts.

Adjusting to chronic illness is a process.  For some, like me, there is a mourning the loss of the active life I once knew.  There is the life 'before illness' and all that has come since.

The challenge is to find peace through a balanced perspective.  Yes, there are some things that I have chosen to accept that I may not fulfill in this lifetime.  Having chronic illness means change. But that is something that we all have in common-the predictablity of change!

I can list all the things that I find disparaging about living with a disabling illness-OR-I can share what I have learned from having to adapt.

acceptance:  I was almost a 'type A' personality.  I was a perfectionist and stressed out so much when I couldn't be perfect that I made myself sick!  Getting smacked down with a migraine has forced me to relinquish control, to let go of that striving for perfection and to accept myself as I am today.  That's not a bad thing.

compassion:  It is so true that if you haven't gone through something yourself it is difficult to understand what someone else is going through.  Ok.  So-now I have the ability to be of service to others who are suffering, who are in pain, whose lives have been disrupted through illness and loss-I can offer empathy and compassion. If having illness forges my spirit into a more compassionate loving one then that is a good thing!

gratitude:  oh boy.  I cannot fully express how freeing it is to feel gratitude for every day I am alive-and every day my children are healthy and happy.  Having an illness reminds us of our mortality.  It reminds us that time is limited and we had better kick ass while we are here!  It reminds us that we must cherish our time with friends, family, engage in our passions, to live life fully while we can!

Pain sucks. Being sick sucks. Don't get me wrong.  I have wallowed in the pity, experienced the full-on depressions and felt, at times, like giving up.  But that doesn't last long before I am reminded that life is brief and beautiful and I will savor every gritty, gorgeous, sensuous, meaningful, keenly felt moment of every day that I still am lucky enough to be alive.



Friday, October 5, 2012

woman as lifelong learner

I am a graduate student in public history at PSU.  Still ;-)

When I entered graduate school a few years back I was employed full-time at the university and began by taking one course a term.  I knew going into the program that with family and outside work obligations the pace of my progress in the masters program would be s l o w.  Just didn't know how slowly it would go.

Health setbacks required a shift from full-time to part-time employment.  I picked up the pace slightly with my schooling however, and continued to progress nicely while pulling good grades. I could do this! Favorable feedback from professors encouraged me in my efforts and it seemed my dreams of working in my chosen field were coming into fruition.

Unfortunately, my health continued to be an issue and I eventually, with support from my dear husband, made the choice to leave my paid position after 10 years of service.  It was a heartbreaking decision on one hand but a relief nevertheless.  I could use my strength to focus on completing the last year of my masters program.

Ah, life has other plans for us!  Just prior to my last week on the job our family suffered terrible losses with the deaths of two family members and two friends.  Shaken, I requested no retirement party, and my last day on the job was minus the traditional fanfare.

Coping with losses meant focusing on the health of our precious family unit.  We needed to be there for each other.  My daughter, in particular, was deeply affected and all my energy naturally shifted to her. We also received devastating news that my mother was diagnosed with a terminal illness-another blow that further drew our attentions away from anything other than caring for each other emotionally and physically.  Finally, additional losses and illness-including something that hit my daughter so hard that we almost lost her-seemed to alter all concept of time, meaning and purpose.  We were doing all we could at that point to tread water.

There is no knowing why our family faced so much seeming insurmountable loss in such a short time.  It just was.  And there was no awareness on my part just how much the stress, the grief would affect my ability to cope with everything from the daily rigors of homemaking and childrearing to being a life partner and to being a college student.  In my mind I was still up to the task but I had not realized that I was actually living in shock.

In now obvious denial, I thought we should all resume our respective routines as soon as possible which included me heading back to school. I signed up for classes and showed up the first week thinking I would be able to function!  My professor kept asking me if I was feeling ok.  Guess something didn't look quite right with me.  He could see something that I couldn't at the time. Within a week I had dropped classes and was in therapy.

Looking back on that time now I can't believe that I thought I was ok.  I was akin to the walking dead.  I was terrified of everything, waiting for the next crashing wave to hit.  My daughter was still struggling, I had a son deployed in Iraq and I was still going about my responsibilities of making school lunches, cleaning the house, cooking meals, caring for everyone as best I could.  But.....when the child and husband were asleep I was up.  I developed a need to have the television on for comfort at all times of the day and night and/or was glued to the internet in what was apparently a numbing behavior. Facebook became my sole companion, computer games became my escape.  My health continued to be a challenge and during this year of 'schock' I became reclusive and dependent upon anxiety and sleep medications.  Because I wasn't moving enough yet eating compulsively I packed on the weight.

It is easy to not feel good about letting myself go over the past year.  Because, on the outside, that's what it looks like.  But on the inside we all must cope the best way we know how with what life throws our way.  Ultimately, forgiveness is the best gift we can give our ourselves.  I want to fashion an enormous 'S' for Survivor and emblazen it on the front and back of a shirt and wear it every day to remind myself that I have endured.  Sometimes, that's not merely the best we can do-sometimes to endure is the ultimate success.