Not Today, Death

“Don’t cry. Stop crying,” she commanded, as I trapped my sobs and focused on her words. “Don’t cry. You have one heart, one body, one life. YOU have to fight for it. Stop crying.” The Infectious Disease Doctor seemed exasperated with me, as if my tears were drops of weakness that made me sicker. Briefly I thought my illness must seem measly to the towering Serbian blonde. In that moment I felt so small in my hospital bed. It was day 4 and despite innumerable tests, no bacteria had been found despite the appearance of my lungs on x-rays and a CT. “Maybe you aren’t finding anything because RA is doing this to me.” “You have fever and pneumonia, all signs of infection. This is what we are treating with antibiotic, ” she waved her hand at an IV bag hanging from one of the poles next to my bed. An oxygen machine ringed in pale blue gurgled and hissed in my left ear. The night before a child with big eyes stood at my bedside wearing a dress in the same shade. Intuition said I should keep that to myself.

When I created this blog 5 years ago I was 44, and fresh off losing a tough, unfair battle for my health and career. I’d been fighting since I was a kid, for myself and sometimes for those who I thought needed a champion, and I was spent. In hindsight, other people, especially those in power, not only preferred women who didn’t make waves, but rewarded them for not fighting. Maybe if I adopted a quieter, more graceful approach during the 5th decade, life would prove less bruising. In any case, I needed time to heal. What I didn’t know is that my fighting spirit would one day be the difference between life and death.

Lying in that hospital bed a few weeks ago, I feared going “…gently into that good night”, dying of pneumonia as the poet Dylan Thomas did, but after 5 years of curbing my fighting nature I was sorely out of shape. There are dreams I haven’t realized because I laid ambition aside, trips I haven’t taken, and works I haven’t written. Death takes who it can snatch away, especially if one cannot fight. Medical professionals are often champions when we are weak, their educated treatment hitting a bullseye and chasing away mortality. And then, there is luck and those who rage; “… rage against the dying of the light” – Dylan Thomas. One physician listened to my mumbles about rheumatoid arthritis as I was sliding near intubation, the ICU, and a large sucking mudhole next to my bed (According to a study published by the American College of Chest Physicians, every day a patient is delirious brings a 20 percent increased risk of prolonged hospitalization and a 10 percent increased risk of death). Once he consulted with my rheumatology office and hung a high dose bag of steroids, the mudhole disappeared. For me, rage didn’t look like the screaming, swing at the fences anger of my younger years. It looked liked grasping, holding on and repeating my assertion that RA affects the lungs, despite feeling small and weak. A reward for my tenacity is more time to write and dig my toes in the sand. Love is sweeter now, too.

My sixth decade begins in a couple of months, time enough to regain my strength, embrace my true passionate self, and resolve to live as loudly as I want. I understand now that I don’t have time to waste. Death is funny that way.

 

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Owning Disease Shame – One Story

I began this post several times, always with a goal of seeking your understanding.  Feelings as words fall flat, so I will simply relay the story of when I started to sense that I was responsible for a disease diagnosis and could somehow control it, and will end with a recent encounter supporting that illusion.

I managed rheumatoid arthritis along with working full-time due to an open-minded and kindly opportunistic Residency Program Director, the only person at work I revealed a rheumatoid arthritis diagnosis to, at first.  During those first two years of RA, I excelled by working from home when I flared, sometimes as often as a couple of days a week during winter.  I spoke at national conferences, was elected to the board of a professional organization, and enjoyed the respect of my peers.  While I needed more rest, and at times the evening commute tortured my hands, I studied during off time and became one of the first in my field to earn a certification.  Biannual 360-degree reviews resulted in praise, pay increases, and even a bonus for the certification.  It would be remiss of me not to mention my diligent Chief Residents who made life easier, most of the time.  As challenging as it was, I had RA handled.

Then a new Program Director came on the scene, a new boss with a multitude of “better” ideas.  Within a month The Idea Guy notified Human Resources that I was ill.  He also sought big immediate changes during recruitment season, the busiest time of the year for competing medical residencies.  For 10 years I worked overtime during recruitment.  My new boss needed me on site  by 7:30a until at least 5p, yet I often stayed past 6p.  The RA flared and I started to limp and type painfully when I finally submitted a reasonable accommodation request under the Americans with Disabilities Act.  I mistakenly thought my past success validated my ability to perform; it was logical from my perch.  After my Rheumatologist’s recommendation and 2 months of diving into my medical records Human Resources determined that being on site was a job requirement, no work from home would be allowed forthwith.  All Residency Coordinators received new job descriptions requiring our signatures.  Within 8 weeks of the new Program Director’s arrival I was feverish with swollen joints and deep body aches I hadn’t felt before.  I tried harder as my new boss became more and more unhappy with my primary focus on recruitment.  He sought my apt attention for a minimum of 2 hours per day as he spoke and my task list grew.  Hiding my pain and frustration became impossible.  My Rheumatologist completed FMLA paperwork for intermittent leave and I asked if I could work at home on those days I could not make it in to the office for a full day.  Human Resources denied my request and began asking for re-certification of the FMLA paperwork every 30 days in spite of the physician’s certification that my disease was permanent.  It is allowable under the law and cost me $25 every month.

All of this happened between August 1 and December 10, the date I was diagnosed with Fibromyalgia.  I unabashedly wailed, “I CAN’T BE DISABLED!”.  Those few moments are indelibly etched on my heart and mind, both my hopelessness and the doctor’s compassion are a part of me now.  This was where my tenacity had landed me, with a prescription for an 11-week rehabilitation program and another for just a few Xanax to get me past the truth.  The story continues with a few months of me righteously (and pathetically) sacrificing my health trying to regain what I had lost.

You may think I am being vengeful 5 years later when I finally got up the gumption to reveal their behavior, but that’s not it.  For  purely selfish reasons and storage space I forgave a while back, but those days left behind a slime of shame that is reinforced with big and small hurts regularly.  The way to rid myself of shame is to own it, so here it is.  I cannot fully control Rheumatoid Arthritis or Fibromyaglia no matter how hard I try.

Waiting in the dentist’s chair last week I heard a conversation across the hall, the two women’s loud voices as clear as if they were in the room with me.  They began with a tirade against welfare, “except for those who really need it, of course”.  Then I heard, “But you know where they could really save some money?  If they actually looked deeper into these people collecting disability benefits.  At least half of them are faking and just sitting on their butts while we foot the bill.”  The other woman responded, “Yeah, I know.  They’re just lazy and don’t want to work.  I started working at 16…”.  I tuned out at that point.

 

Dismantling Fear

Beyond survival, fear lurks not only in the dark corners, but also in the joyful moments, waiting for an invitation to withdraw serenity and instill anger and sadness.  Fear often wears a disguise of concern,  uses ego as a henchman, and usually surfaces as “what if?”.  What if I express an idea and people reject it/me?  What if I look stupid?  What if I fail or make a mistake (and look stupid)?  What if an accident or an illness takes away someone I love?  What if my health declines?  Thoughts run in gangs and possess a mob mentality.  I desire an upbeat, kind, and intelligent gang of thoughts to hang out with, but how do I control non-essential fear, the bully of my gang?

Fear lives in the amygdala, our base emotional center, where fear conditioning occurs and unconscious evolutionary memories are stored apart from complex reasoning in the cortex and higher learning in the hippocampus, .  The amygdala soaks up sensory input from our experiences and assigns emotional tags.  In similar situations we may feel threatened, fear triggered by a smell, a room, a voice, or an action.  Wired to react quickly to fear, I can easily damage relationships or sabotage my work by overreacting or withdrawing, two perfectly reasonable fear responses.

The amount of fear hiding out in my amygdala is understandable, thousands if not millions of memory bits collected long-ago during  times of abuse and rejection.  Understanding fear is a biological process, evolving with our experience, re-frames unreasonable fear responses as manageable.  Desensitization can minimize or even destroy unreasonable fears using exposure and relaxation exercises.  A rise in blood pressure and cortisol dumps dictate a two-pronged approach with relaxation at the center.  I am not addressing a phobia, but an imaginary fear, so I begin by imagining my worst fear.  Creating a list of fears aids in choosing the biggest, baddest and most destructive fear bully.

I can pick apart my fear of rejection, imagining a rejection letter, a negative blog comment, or an in-person query regarding what I do all day.  I can imagine “what if?” and write the story to its end, even if only in my thoughts.  Imploding from shame does not happen in real life, so I survive to write, live, and love another day.  Using diaphragmatic breathing and a memory of Lake Huron’s waves lapping the shore helps me release anxiety induced by my imaginings.  I also use exercise to reset my brain and confirm I am alive and safe, even if I do look stupid.  I’ll repeat my exposure and relaxation exercises until looking stupid or being rejected is unimportant and what may happen holds no power.

“Don’t give in to your fears. If you do, you won’t be able to talk to your heart.”
Paulo Coelho, The Alchemist

 

 

Is There A Payoff for Being Authentic?

Being “authentic” sounds positive in the arena of accepting oneself and living true to one’s values, and easy in the context of “just be yourself”, but what is the reality of being authentic, without tailoring speech to manipulate how others may feel?  While some may say that doing so is only polite, at what degree of political correctness is the essence of the truth lost in trying to avoid disapproval or gain acceptance?  And when we lose the truth as we know it, once it is watered down with diplomacy so everyone still feels good, what is the price to self?  Although these habits are common, they are not authentic behaviors, but influenced by our need for people to accept us or at least not disapprove of us.  The deeper the need for acceptance, the less authentic we tend to be.

So, what is the benefit of being authentic if people may get offended or disapprove of me?  Why take the risk of exposing myself as I truly am?

inner_truth

Four payoffs of authentic living that make it worth it for me are:

  1. I am not involved in real-life experiences that require I pretend.  That is what my inner writing life is for.  I no longer betray the little girl who didn’t fit in by wearing a mask.  Instead I parade her in front of everyone as an act of self-acceptance.  I am not afraid to be vulnerable because everyone is vulnerable and feels like a hot mess at times.
  2. By accepting myself I give others unspoken permission to be real, which makes people more interesting and relationships more fulfilling.
  3. The more authentic we act, the more self-esteem we acquire by not subordinating ourselves to the opinions of others.  Self-esteem begets more self-esteem until we are truly comfortable in our own skin.
  4. Being compassionate and kind begins with acceptance of self.  We can then move on to accept others as they are rather than who we want them to be, saving ourselves a heap of disappointment.  I find if I am not authentic, I judge others just as harshly as myself.

“Most people believe that vulnerability is weakness.  But really, vulnerability is courage.  Are we willing to show up and be seen?” – Brene Brown