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My Plight
My Story
"You may have a fresh start any moment you choose, for this thing that we call 'failure' is not the falling down, but the staying down."
-Mary Pickford
Gladys Louise Smith, known professionally as Mary Pickford, was a Canadian-American film actress and producer with a career that spanned five decades.
In 2008, I was enjoying a successful sales career, being a newlywed, exercising, spending time with friends and family, raising two new puppies and volunteering at my local animal shelter. Until, one September day when my life came to a screeching halt. An unexpected, constant, excruciating pain ensued giving way to the diagnosis of a rare form of a common reproductive disease among women- a recurring disease that the medical world has no known cure for, yet. Finding a solution to Deep Infiltrating Endometriosis and its byproduct, chronic pain, became my "new normal."
I had surgeries with the world's best and brightest- one of them trained by the founder of the surgical procedure for the disease. I tried hormone replacement therapies, anti-depressants, anti-convulsants, anti-anxiety, anti-inflammatory, and anti-psychotic medications. I tried yoga. Drastic diet changes. Physical therapy. Meditation. Acupuncture. Praying. Organic-only products. Massage therapy. Talk therapy. Support groups. Exercise. Weight loss. Hot baths. Heating pads. Cold compresses. MRI's, CT's, ultrasounds...Botox shots. And, a smorgasbord of doctors each with various specialties.
My marriage, family, friends, career, hobbies, and emotional health all suffered at the hand of a disease that's medical acronym is D.I.E. (seriously! Bizarre, and yet, strangely appropriate). After enduring 4 surgeries in 4 consecutive years I was bedridden, bitter and feeling immensely burdensome.
I was convinced things couldn't have gotten worse.
Word to the wise: NEVER say that.
On January 9, 2011, my father and best friend suffered a hemorrhagic stroke resulting in my having to administer CPR. After being on life support, my Dad miraculously woke up. But our gratitude wouldn't last long - follow up image studies revealed a grade 4 glioblastoma multiforme tumor. A fast-growing, aggressive, malignant cancer left my beloved father with a life expectancy of 15 months or less.
My Dad passed away on September 8, 2011- just 6 months after his diagnosis.
Gripping anxiety, breathtaking grief, and a deep, dark depression set in and paralyzed me. I became distant and despondent. I couldn't sleep, eat, concentrate or go an hour without bursting into an uncontrollable, guttural cry. My physical pain reached new heights. I decided to leave my job in an attempt to gather myself and undergo my 4th surgery. The acronym for my disease never seemed more relevant.
The only reassurance I had was knowing things couldn't get worse.
Word to the wise: NEVER say that.
In 2013, after 8 years of marriage, it too unraveled... with the rest of me.
I tried hormone replacement therapies, anti-depressants, anti-convulsants, anti-anxiety, anti-inflammatory and anti-psychotic medications. I tried yoga. Drastic diet changes. Physical therapy. Meditation. Acupuncture. Praying. Organic-only products. Massage therapy. Talk therapy. Support groups. Exercise. Weight loss. Hot baths. Heating pads. Cold compresses. MRI's, CT's, ultrasounds...Botox shots. And, a smorgasbord of doctors each with various specialties.
One month after my fourth surgery for DIE, I was completely comatose. I could not function in any capacity. My marriage had seemingly taken a fast-track to divorce. Though I felt as though the surgery was successful, the acute pain from recovery was hellish. The pain of losing my partner and my Dad, almost simultaneously - two of my most favorite people in this world made it indisputably... painful to breathe. The world may have continued on but mine had effectively stopped.
Until one late February morning in 2013, when I finally faced the fact that I wasn't living...I was existing.
My family graciously afforded me the opportunity to attend the country's leading, private, in-patient, chronic pain recovery program in New England. I checked in on my Dad's birthday- the irony was not lost on me.
NCIB published a study on interdisciplinary pain centers, much like the program I attended. The following explains the basic premise behind pain centers.
Until one late February morning in 2013, when I finally faced the fact that I wasn't living...I was existing.
"A number of elements are common to most interdisciplinary programs. First, most programs involve medication management to simplify medication schedules and reduce use of opioids. A second element is graded physical exercise, in which patients receive instructions on physical exercise to help them overcome anxiety about physical activity. A third primary component of an interdisciplinary program is cognitive-behavioral training. Patients are given techniques to change thinking patterns that adversely affect their response to pain. Treatment also focuses on teaching behavioral skills, such as relaxation or biofeedback, to self-regulate psychophysiological arousal as well as pain. A fourth focus of the programs is on decreasing the impact of pain on functional life roles. This may include tools and techniques for adaptive living, ergonomics and energy conservation, pacing, and vocational counseling.(1)
Upon "graduating" I had a new lease on life. My pain wasn't gone- I'd still have to shelf my Olympic figure skating dreams, but my pain was managed. More importantly, I felt confident in my ability to manage my pain...even in the absence of the pain medication I chose to eliminate. However, I knew that 30-days just wasn't enough for me to feel confident in being able to choose my newfound skills over my ineffective old patterns when faced with any kind of adversity- especially as it pertained to going back to the difficulty I had left behind.
Much like newly sober addicts are taught to "change people, places and things" to create a larger cushion of success, I knew that if I walked back into the life I left behind, I'd quickly fall into a state of depression, anxiety and self-pity - I'd fall even further into a deep, dark hole that I would be unable to climb out of...again.
With the support of my family, I decided to move up to New England so that I could attend the chronic pain recovery outpatient program, continue working with doctors I had met, and participate in the weekly Chronic Pain Anonymous group held on campus.
I started with the end in mind. What did I really want for this next chapter of my life? What mistakes did I make and what lessons did I learn from those mistakes? Once I was clear on the direction I wanted to go in, I made a plan and broke it down into small, palatable steps.
I spent months implementing the coping and pain management skills I learned- discovering what worked in my life and what didn't work - continually making small adjustments based on variables like practicality and effectiveness. I got back into shape, I rebuilt the relationships that had fallen apart, I went back to work, I established a new group of friends, began dating, and found love again.
Chronic pain may have won many battles but I was never going to allow it to win the war.
After a few years of trial and error, I felt confident that I had an algorithm that worked. I was so grateful to my family for affording me the opportunities they did. However, I couldn't help but think about other chronic pain sufferers who, for one reason or another, wouldn't have the same chance I did. So, I decided to dissect my successful formula in order to identify a few critical pieces that I could pass along to others who struggle.
Chronic pain may have won many battles but I was never going to allow it to win the war.