8 Years Later: Why I’m Still Here

8th Blogoversary

So much has changed since I started this blog, but what remains is my belief that this matters. My voice, your voice, researchers, physicians, caregivers – we all need to be part of this conversation. Our stories connect us, unite us, and bring us closer to understanding illness and how to live with it.

It seems appropriate that today, on the 8th “blogoversary” of Face Forward, I would stumble on an article that implied false information about the treatment and curability of lupus. It reminded me of why I want to be here, why I will continue to try and find a way to fit blogging and patient advocacy into my life. It’s hard to be consistent, to be here as much as I want to be, but I want to try. I want to keep myself in the conversation, to find other voices, to turn up the volume. 

It’s not just about building awareness to support research towards finding a cure. It’s also about creating a community that goes beyond your specific illness. There is a common language and wisdom in our journeys that can inspire and empower. I am honoured that I’ve been approached by patient advocates of all kinds and I plan on continuing to share the work that they do.

My story here on Face Forward began when cancer survivor, Lisa Ray, started telling hers. Storytelling is contagious and it’s the one thing that shouldn’t be cured.

 

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This is for you

When your appearance changes due to illness/ meds, it’s not about vanity, it’s about loss. Not recognizing yourself in the mirror while struggling to heal and navigate the changes in your life adds another level of stress and anguish. I say this because I’ve experienced it.

I’ve never had cancer, nor do I claim to understand how it feels to live with it. I’ve wanted to donate my hair for a long time, but recent events informed my decision to do it now in honour of loved ones – angels, survivors, and those courageously battling – this is for you.  #8or8

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The Answer is YOU

On a wet and miserable evening this past Fall, I sat behind the wheel of my car, desperate for warmth and rest after a very long day. I peered irritably through the watery glare of my windshield at the car I’d been forced to follow for the last few blocks. I sighed with impatience.

“Just get out of my way already!”

As I slowed to a stop at the red light, I saw this:

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The license plate had my name on it and it was screaming in all caps:

THE PERSON HOLDING YOU BACK IS YOU.

I quickly grabbed my phone and took a picture of this random piece of Universe wizardry.

Last week, months after this picture was taken, I was brought back to the truth of that moment. I spent four days in a workshop about reconciliation where we were taught that before we can reconcile with others, we must learn to reconcile with ourselves.

Reconcile: An act of reconciling, as when former enemies agree to an amicable truce. (dictionary.com)

Going into the workshop, I wondered if I would be able to reconcile with lupus, this mysterious, invisible invader that I’ve personified into an ever-present, formidable foe. I was quickly reminded that the factual events of our lives (like getting lupus) cannot be changed, but we can change how we react to those events.

At the workshop, they talked about the reactions that we have “practiced” throughout our lives. These reactions have become so instinctual that they start to define who we are, when in fact, they hold us back from being who we truly are. They broke it down into 13 reactions:

  1. “What About Me” Syndrome
  2. Dishonesty
  3. Dread, Worry, and Fear
  4. Critical: Fault Finder
  5. Blaming and Nurturing Resentment
  6. Anger, Rage, Aggression
  7. Intolerance and Impatience
  8. Addiction to Being Right
  9. Have to be in Control – “My Way or the Highway”
  10. Poor Me, Martyr, Victim
  11. Isolate and Withdraw
  12. Explanation
  13. Excuses for Everything – “I can’t do it”

(Credit: Returning to Spirit)

For me, #3 and #11 are my top two recurring reactions, although I can say I’ve done every single one at some point in my life. I also know that my top two reactions have been at the root of all the major flares I’ve had in the last 15 years.

“When we are no longer able to change a situation, we are challenged to change ourselves.” – Victor Frankl

To be clear, I’m not advocating for a pollyanna view of our lupus troubles, only that trying to be self aware of our reactive behaviour is a way to decrease emotional and mental stress, which is a major lupus trigger.

So, in the end, the car turned off and I was able to complete my speedy mission towards warmth and rest. And really, I think that’s what we all want:

A clear path towards something good. 

The last person that should be standing in your way is you.

NOTE: The broader scope of the workshop was about reconciliation with Canada’s Indigenous People. If you are interested, here is a CBC radio segment that addresses self-reconciliation and how it fits into this important issue.

Face Forward Turns 7

Excerpt from Blurry Face & the Impending Victory of the Battle of the Brain:pc1902332Just before my master keeper gently hurried me off to the ER that August Long Weekend, I sat on my couch in my beautiful character apartment with my computer on my lap, changing my profile picture on my facebook page.  I was completely unaware of what would happen next, that I would almost completely disconnect with my working mind and brain and body… and yet, looking back, somehow, some way, I did know.  Mind buzzing, I chose to change my profile pic to one that my master keeper had taken of me climbing the mountain stairs that led to the Seoul Tower in Korea.  I’m blurry because I’m running up the stairs in a silly, fatigued stupor, it’s night, the path is dark and it looks like there is much farther to go.  I wrote a caption underneath, “A journey of a thousand miles begins with a single step.  See you at the top!”  I finish it off with a happy face and changed my facebook status to this: “He who has health, has hope. And he who has hope, has everything.”  I then put on my best pyjamas, wrapped myself in my best shawl, put on my red and blue monkey socks (because they were funny and I knew that everyone would see my socks at the hospital, so why not make everyone smile?) and announced that I was ready to go.  It was like I knew I was going to be in the hospital for a while, that I knew something big was going to happen, that whatever it was it was going to be the biggest challenge yet…

A month and a half later, I started this blog.

Exactly seven years have passed and I am still amazed that somehow, while in the throes of brain inflammation-induced psychosis, I not only knew I was about to face something life altering, but I also knew I would conquer it. Amidst all the suffering, it was a beautiful gift, this access to a powerful, confident inner voice that wanted to be heard.

Writing in this blog has helped transform my perception of who I am, my disease, and the kind of life I want to live. It uncovered this magical online platform for healing and connection. I now know that I needed to share my story in order to fully accept what was happening to me.

Terminology note: If you were wondering about the term “keeper” in my quoted text, I stopped calling my loved ones that a few years ago. I can recruit people to help me accomplish my vision of wellness, but at the end of the day, I am my own keeper. I am the CEO of my health.

To begin Face Forward’s 7th year on a positive note, here are my top 7 wellness victories:

  1. I can sleep lying down! (no more chest tissue inflammation)
  2. I’m down to one medication and it’s NOT chemo or Evil P (prednisone).
  3. My rheumatologist sees me every twelve months vs. every two weeks.
  4. I left my FT job, for a flexible, PT position that allowed me to rest if I needed to.
  5. Five years after I did #4, I left that PT job to pursue my true passion.
  6. I ran two 10 K races – I used to struggle with walking one block.
  7. I haven’t been hospitalized since this blog was started.

It hasn’t all been victories and trust me, there have been times when I’ve felt completely paralyzed with fear and anxiety. In fact, the last few months, I’ve been feeling really disengaged and unmotivated when it comes to my self-care. I am starting to feel the consequences and yet, I am unmoved. I’ve been trying to make sense of it on my own, but after weeks of frustration and negative self-talk, I think I’m going to try to figure it out here – with you. Part of the reason why I continue to write is because I think it’s important to be candid about every part of chronic illness, especially how it effects us mentally. More to come on that later…

For now, I will say happy 7 years to this weird, little blog that was born out of chaos, but remains a steadying reminder of miles traveled and hard won. “The top” is in every step, over and over again, everyday of this lupus life.

Thanks for travelling with me. I’m glad you’re here.