The Last Post

I can’t really remember what life was like or who I was before I started this blog.

I wrote the first post when I was 28 years old, a manic blur in my childhood bedroom. Even amid the medicinal haze and brain inflammation, I knew I couldn’t hide it anymore, that I needed help. And just like that, you were there. So many of you were there to show me I wasn’t alone, that I could get through it, that I could get to her… the healthier me I am today.

This part of the journey is coming to an end, but I want to continue to advocate and tell our shared story in a different way. I haven’t figured out how yet, but I need to close this door to discover what it is.

This is the last post of this ridiculous, amazing record of all that pain, of the blank slate it gave me, of the lessons I will never forget. I’m grateful for this chance to live a different kind of life, for realized dreams, for the love and support of my family and friends.

And I’m grateful to you for helping me face forward when I could hardly move. For visiting me here when I felt so isolated and afraid.

I will take the blog offline one day, but till then, I leave it here with you.

With love,

Elena

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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.

 

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.