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Saturday, June 16, 2018

20 Years Sick, 20 Thoughts (Part I)




It's a couple of days before my anniversary of getting sick (June 18,1998), and I woke up feeling tearful and crabby. I put aside my to-do list for the day and decided to write instead. Every year, this anniversary stirs up a lot for me. 

Here are my 20 thoughts on 20 years sick (published in installments). I've written them from MY perspective only, as I know there is no 'one size fits all' for living with chronic illness. 



1. Mark My Anniversary. Taking the time out to honor the losses and celebrate the victories, allowing myself to feel the emotions of the journey and finding a ritual to mark my anniversary provides healing for me. I have planted trees in our yard; printed words that define my journey and burned them in a dish of floating candles; had a girls night out for drinks when I felt better; treated myself to an outing at Ulta for a makeover and new beauty products; planned a special meal with Mom or simply left the day 100% for me. 

This year I'll spend my anniversary getting a salt stone massage (I've never had this before!) with one of the message therapists that is a tremendous part of my healing journey; have dinner with Mom and our neighbor, Marge, to celebrate her 80th birthday and....

I will be getting a tattoo. Yes. You read that right. I have a consult scheduled the week of my anniversary, and the tattooing will be done in August. I have wanted a tattoo for a very long time, and I'm ready to get a small tattoo that reminds me, in a positive way, of my journey.



2. I now define myself as a person with a disability. This is a huge mental shift. For a very long time, I just said I was sick. I now view myself as a person with a disability. Person first. Always. I am not a disabled person. 

The evolution of viewing myself in this light resulted from the 2016 election. Up until that time, I remember hearing Hillary Clinton speak in our town in 2008. She spoke of PWDs as part of those who matter and who she fights for. I remember thinking: "she's talking about me. And she's including me in her language."

But I didn't fully recognize myself as a PWD at that time. Now I do. This shapes my passion for activism for all PWDs, not just people with my illnesses. 

It's lead me to meet with my congressman, campaign for candidates who support healthcare for all and protection of people with disabilities, work for affordable healthcare, connect with larger healthcare organizations and, in general SPEAK OUT.

Relatedly, I now say: "I live with a chronic illness," rather than "I'm chronically ill." For so long I have put so much emphasis on my illness that it is as if I shake someone's hand and immediately say: "Hi! I'm Emily and I'm chronically ill." My counselor compared it to her going up to someone and saying: "Hi my name is E. and I'm gay!" Chronic illness is a part of me, but it is not all of me. Shifting this perspective is still in process. I find that I am most fearful of chronic illness as an immediate deal breaker when trying to date.



3. How others view me is their issue.  I surround myself with people who view my journey as one of resilience, perseverance and light. I don't have time for people who cannot see past my illness to my core or who see it as a weakness or something to pity.



4. I'm letting go of shame. We live in a society that wants women to be young, healthy, skinny and uncomplicated. For so long I have felt shame over being a person with a disability; over being sick; over living with illnesses that many people do not believe exist or are deeply misunderstood; over being sexually assaulted; over being a Medicaid recipient; over not being skinny. I've even felt shame around not being married, not having a career and not being a mom, as is 'expected' by society.

That's a lot of shame to carry around. I would rather pronounce myself a survivor, an advocate, and a person whose life experiences shape her world view for positive change  than as someone who has so much to be ashamed of. 

I'm no longer going to check off all of those boxes of shame.



5. Chronic illness affects and effects every aspect of my life. Every. Single. Thing. Every moment of every day. Period. It has become our 'normal.' We are so used to my sleep schedule, my medication schedule, planning out how to make things doable, figuring out foods to eat, etc. 

In this same vein, managing my health has to be my full-time job and number one priority. If I don't keep managing and maintaining my health front and center, I lose even more of the freedoms I do enjoy now. I don't love this reality, but I'm trying to accept it and honor it rather than push against it.

I never rest in stability. As I say: "It's always something with me." The last 20 years have literally been one empirical trial after another.



Blessings,

Emily

Photos: Tulips at the arboretum on Mother's Day 2018 (May 13).

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