My New Life as a Cushie Non Grata
Ever have one of those weeks that convinces you every planet must be in retrograde? Welcome to my world. This past week was a doozy for me.
With perspective being the name of my game in 2012, I remember how I vowed just six weeks ago to focus my energies. I needed time and the New Years resolution to help me focus on myself, not others. I decided to focus my energies towards what I considered the most importants things in my own life -- my family, goals, wishes, desires, and of course, my health.
Without detailing all the changes swirling around which are bringing me just what I want in 2012, I am proud to say that I have made progress on several fronts.
Then BOOM. The floor drops out from underneath me. Not once. Not twice. Three times. Big seismic shifts in my medical life.
Through the tears of hurt, misunderstanding, and devastation, I have done a lot of soul-searching.
I am reminded of one of my favorite cartoons about the internet, social media, blogs, and message boards -- any and all outlets that let us interact with those 'like' us or who share a common interest, philosophy, or way of being.
I will admit that I laugh every time I see this. I nod in recognition. I know that person in the desk chair. She lives occasionally in my home, too. She and I share a seat sometimes, late at night, as my cortisol surges and keeps me awake, surfing the internet, desperate to connect with those like me.
I see her spirit seize those I see through my computer screen much too often, as they become hell bent on setting all manners, dignity and self-respect aside in an attempt to prove that you are the wrong-doer. They confront for sport (or to win JERK points at the JERK store, for you Seinfeld fans), saying things I am pretty sure they would never muster the courage to say in a face-to-face encounter.
I am reminded too often that the internet brings out that sinister side of human nature that can't leave well enough along, that won't let up until they see you suffer. It's a very ugly, dark, nasty side.
When I started this blog in May 2008, I never dreamed I would say the following:
Since this is the only place where I can say what I want without fear of being deleted or outvoted by the committee of prevailing opinions, let me take a moment to be very clear.
I do not want to be that person in the desk chair.
I am no longer that person in the desk chair.
I will not let anyone goad me into being that person in the desk chair.
I assure you.
I will not let them turn me into that person in that desk chair.
I won't let that be me.
I realized this online debating thing could be a problem for me a long time ago. Faced with fear and armed with odd symptoms, tears but always a little hope, I started communicating others who suffered with the same disease I thought I had almost five years ago. Through the years, the community and many individual members have saved my life with compassion and knowledge. I will always be thankful to so many. However, every third triumph was accompanied with a subtle stumbling block, something I had to "get over." Over time, I noticed triumphs mixed with veiled sarcasm, well-masked ill intentions, words-as-daggers, and group consensus.
Undeterred, I fought though struggled to keep my place in a community of those like the 'new' me--the sick me. This always baffled my husband, whose spent many hours listening to my woes and fears of not belonging.
Why bother with all that? Stay here close to me, he said. We will figure it out. We will get through this together
With this seed planted in my mind, our own Cushing's experiences provided footing in an unfamiliar world. Fears of belonging and falling were soon replaced with balance and moderation. Shhhh, don't tell my husband, but in secret, I would continue to daily struggle to belong.
Slowly but surely, I did more of what I didn't think I could do. I felt myself being reabsorbed into the family that I was trying to build and sustain despite Cushing's. It is my family in my home, I realized, that I needed to sustain me through this medical journey.
This week, my little engine that could life-modification project got a violent shove into priority slot # 1 this week. Without notice, without any chance to clarify, I would come to find out that 1) my services were no longer needed and 2) services are no longer available to me. My patient life, experience sharing, community of support -- all deleted.
Dumbfounded. Betrayed. Rejected. Misunderstood. Mischaracterized. Overwhelmed. Hurt. Disappointed. Powerless. A
nd yet Relieved.
I have proudly moved away from the desk, back into my life, and when my cortisol is not too high at night, even back into bed
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There is no reasoning with the unreasonable.
It may take a little bit of time to sink in through any fears of reputation-tainting. So it bears repeating.
There is no reasoning with the unreasonable.
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Social Media in Moderation, I welcome you!
I must accept the positives it brings into my life -- connecting with my family and friends all over the world and sharing information about Cushing's with you readers, old and new. While I regret missing announcements (surgeries, falls, adrenal crises, reoccurences), I know I must be remain positive, move forward, and use the internet in a way that feeds my soul, not bleeds it. I can, more importantly, reject any of the negative that it brings my way.
This works for me as a Cushie, and it makes sense for anyone who is trying to surround themselves with folks that lift them up, not tear them down.
Grab those around you that you want to take on this journey called life. Embrace them and say, Listen buddy, you are coming with me! Make sure they always know you care. Leave behind all the rest to gather dust in a closed chapter in the story of your life. Move on and build new memories.
It is my hope that you consider this as important of any experience I've shared with you over the years.
For we Cushies--determined, willful, courageous beautiful Cushies--should not reserve one modicum of space for unwarranted stress in our life.
May you stand strong when good decisions are made for you. ~Melissa