I’ll admit it…..I almost backed out at the last minute.  I had been planning on attending the LFA NC Lupus Summit for some time now and had visions in my head of overwhelming knowledge and epiphanies coming my way.  I dreamed of finally being in a room filled with people who didn’t ask me how I felt…they already knew.  I was so excited to spend time with those that also “don’t look sick” and fight for each and every spoon that they have. Then it happened…you all know what I’m talking about.  The familiar ache that makes it impossible to keep your legs still for more than 30 seconds, the ten mouth ulcers that make the inside of your cheeks feel like you have been drinking a cocktail of battery acid, the ankle and knee swelling so massive that you have a hard time finding where your foot ends and your thigh begins and the fatigue that could only be rivaled by someone gestating quadruplets.  Oh yes…a few days before the summit, I said the big “F” word.  Flare.

I cried, I make-up’ed my rashed face.  I cried, I took pain pills.  I cried, I sat in baths hot enough to boil a lobster.  I cried, I prayed for the swelling to go away long enough for me to pry the shoes off of my feet with a shoe horn.  After a full 24 hours of tears and a bent shoe horn, I admitted to myself that maybe it wasn’t meant to happen.  There was no way that I could be weak in front of a room full of people…to have to shake their hand sitting down because I just couldn’t stand anymore.  These were MY people but something inside of me still refused to let them see me as I really was….sick.

It came down to the night before we were to leave for Charlotte that I decided to do an impromptu scavenger hunt for all available spoons in the house (who knew I’d find the majority of them shoved under my daughters’ beds along with bowls that looked like they once housed ice cream).  Something inside of me told me that I needed to go…that I HAD to go.  If I couldn’t show my weakness to my Spoonie sisters, then who could I show it to?  I realized right then that I had spent the last 6 months or so writing about acceptance and encouraging openness and honesty with the people in our lives.  It was time to shut up and put my money where my mouth was.

Now I am no stranger to meeting “online friends” in person…there were two other groups of friends that conversed online that I had the pleasure of meeting outside of the computer…but I was uncharacteristically nervous.  For some reason, meeting my Spoonie sisters was scary.   Maybe it was because of the fact that I couldn’t hide behind an “I’m fine” mask with them.  They would know that it was constructed from see through paper and would be able to instantly know how bad I hurt. I saw it as some sort of “ESP”…. “Extra Spoonie Perception”.  Simply put…they…would…just…know.

First up on the agenda was meeting my local LFA Director for dinner.  No problem…piece of cake.  She had seen me already during Lupus Walk steering committee meetings as I popped pills and sat with my cheek down on the table as if it were 3am and I had just come in from an all night bender.  It was the other members of the dinner party that scared me…specifically the one that I couldn’t wait to meet.  The one that I had emailed so much and spent so many hours on the phone with…The Spoon Lady herself.

Stephanie meets Christine for the first time.

The minute she walked in, something switched inside of me.  It was as if the moment she smiled at me, I knew my sister had walked into the room.  It’s funny, how you see people’s profile pictures on facebook or twitter and think there is no way that you could ever pick them out in a crowd.  That absolutely did not happen.  As our eyes locked, immediately I knew her and she knew me.  There was no trepidation…no uncertainty and definitely no reservation.  We hugged and we hugged and we hugged.  As I looked at Christine, I knew that with her, I would never have to make up an excuse as to why I had to leave dinner early…or why I was being quiet during table conversation (yes, believe it or not, I CAN be quiet)…or how I feel.  She knew.  She would know.  She had known. 

Finally feeling at ease, more and more spoonie sisters arrived and the dinner was just as it should have been…noisy, energetic and full of laughter.  Even if no one else in the room…hell, even in the hotel… “got” us, we knew those four chairs that sported butterfly wings on the back would “get” us.  I left that dinner with a feeling that I had never known before in dealing with Lupus…camaraderie.  Living with an autoimmune disease often makes us feel isolated…like it is a “me against the world” movie and we are constantly playing the lead role.

Let me stop here and say that I never made it to even one single workshop that I had signed up for that next day.  I never registered for door prizes and I never visited the vendors.  I ran the ButYouDontLookSick.com merchandise booth.  I have served on the Executive Steering Committee for our local LFA walk for two years now and have spread awareness through social media as much as I could, but I have never felt like I was a part of something or giving back to the Spoonie community like I did behind that table and underneath that familiar purple blocked banner.

During the presentation I sat and listened to everything Christine had to say from her stories of her childhood on up through the moment in high school where she realized Lupus had a stronger hold on her than she ever wanted to admit.  I nodded my head as she described her determination to be normal…to not back down but do things even bigger, flashier and more vocal.  I smiled as she told stories of shaving her head in protest before the chemo could do it for her and I felt my stomach flip as she recounted the moment of her daughter’s birth as a moment she had bested Lupus.  I knew it.  I had been there.

Christine speaking at the conference saying "I am just a girl with a laptop and a big mouth!".

Christine has joked that she isn’t an autoimmune celebrity….she’s simply a girl with a laptop and a big mouth.  She started with a need to let her voice be heard and let everyone out there like her know that they aren’t alone.  In doing that she has created a worldwide support group that serves a purpose that she could never even begin to imagine could’ve been possible.  We’re a family.  Do we argue?  Of course.  Do we get annoyed with each other at times?  No doubt.  Do we laugh and smile at something someone said?  Absolutely.  Do we cry when one of us is in pain and can’t see anything but darkness and sadness?  Every day.

I was a Spoonie.

Article written by guest writer Stephanie Kennedy