At 2:00 AM this morning I awakened to the text alert on my phone simply BLOWING UP! Earlier in the evening, I’d fallen asleep on the couch while watching TV with the offspring. I rolled out of my nest trying to remember where I’d left the phone so I could shut the stupid thing off. Then I saw the message.
Lexie (AKA @OneBloggerGirl), a woman I had met through Twitter and the shared hashtag #scleroderma, passed away on August 7th. She was 29 years old.
I was speechless. Stunned. Numb.
Then the text from Karen (@KarenOVasquez), a mutual friend, arrived telling me to NOT get on-line until I had called her, but it was too late. I already knew.
At 2:20 I put the coffee on and turned on the computer. By then Karen had already posted a short tribute, “A Great Tremor InThe Force.” I read it while the coffee was brewing. I followed the embedded link to Lexie’s blog, A Girl at a Crossroad. I re-read her “About Me” section and the posts. There were, after all, only four.
“Hello World!” May 12, 2012: “…One of my missions in life is to rid myself of such negative energy. It’s draining! Life is supposed to be joyous… a celebration even in times of misery and hardship! I want to make an impression, even if it is a small one…”
Then I grabbed a cup and called Karen. The first few minutes of the call were filled with awkward silence while both of us fumbled for the language to express something…anything…we were feeling. After a few false starts, she simply stated, “I’m angry!”
I answered, “It’s not fair!”
Slowly at first, we began putting together the pieces of the woman we knew. She was diagnoses in 2011 with Scleroderma and MCTD (Mixed Connective Tissue Disorder). Thanks to the wonders of her misdirected immune system she had pulmonary hypertension and pulmonary fibrosis, leaving her needing oxygen 24/7 and a double lung transplant.
“Living In Fear…Praying For Strength” May 15, 2012: “…It feels so good to be honest and to just let it be known that I am tired. Even though I’m tired, THERE IS NO WAY I AM EVER GOING TO GIVE UP! I have too much to live for. I’m not a girl who has had a lot of luck in life, but I am fortunate in many ways and I am truly blessed. I know who my friends are as well as what it means to be a friend… I have loving family members who extend the support and cheer me up when I need to smile… I am loved…”
Sometimes, our bodies just have no sense of humor. But Lexie did. She worked hard to find the humor (even if we sometimes did get a little dark) in whatever situation she was in. She was a self-proclaimed Nerd and her blog bio talked of her love of animals and horseback riding.
The last time we heard from her was August 4th, three days before she slipped away from us. She was cracking jokes about her Doc’s pants and the fact that she’d been in The Fortress of Solitude (our term for the Hospital) for over a month. Her Doc was telling her she might get to go home on the 10th or 13th. But she also said that there was no laughter in his eyes that day, only concern.
Her final Tweet to us was, “LOL! Thanks! The love keeps me strong!”
Karen and I talked for over two hours, trying to make sense out of the senseless, alternating between laughing and silent tears. Together, we tried to picture what she must have looked like. You see, Lexie never bothered to post a profile picture anywhere that we could find. The gold Twitter egg was the only visual we had to go with the woman. The, “…bitch with a heart of gold! In need of a double lung transplant...” as her Twitter bio proclaims.
“Due at The Fortress Of Solitude” May 25, 2012: “…I love the people in my life, and I know they love me wholeheartedly AND unconditionally! This is a journey I’m not meant to take alone, and it’s a journey that is by no means simple or easy. It’s going to be a tough climb, but I’m glad to do it. Now… ON TO THE FORTRESS OF SOLITUDE! Wish me well, you guys!...”
We also discussed the joys as well as the pain of being active in the Chronic Illness Community. It used to be when a friend went MIA for a week or two; you figured it was vacation, busy with kids, school, work, and life in general. In this alternate world, you wait and worry. There are “other” things that could bring about their prolonged silence. Then worry gives way to fear…Then at 2:00 AM the phone begins its Banshee’s keen.
We’ve all heard the fumbled words meant to soothe an aching soul, “Life is so short,” “Taken too soon,” and “These things happen.” And sometimes, they do. Even when it’s not fair.
Since I hung up the phone at 4:30, I’ve read her blog several times, trying to find some clue, some word of comfort. Some connection my brain could grab ahold of to make this come into focus. I have found repeated smiles at her spirit. I have found comfort in her strength and the way she chose to face her life.
“A Recap of the Adventures at the Fortress” June 26, 2012: “…so how do I alleviate the situation? Jokes! A sense of humor makes any situation comfortable…”
But there are no answers. Maybe someday with all the on-going research into auto immune diseases. Maybe someday in the future, but August 7th is done and gone. For Lexie and too damn many others there will be no answers.
As I went over her “About Me” again, one line jumped out at me and brought the tears back. But as I read it over and over and over, a smile started small and then burst across my face, kinda like the Sun shining during a storm. I’ll end with that quote and the knowledge that she gets her wish. Her voice will always be around to remind us all that life is indeed precious and all too short. And sometimes these things do happen. Rest well, my friend!
“…Blogging is a great way for your voice to be heard without it being meaningless. I get to share my adventures with the world, important information about serious issues, and should anything happen… at least my voice is around to not only bring some awareness, but I get to share my opinion on a lot of things… I promise you all, we’re going to have a blogging-good time…”
* Lexie's best friend Claire, the amazingly kind woman who let us know of her passing, was wonderfully kind enough to send us a picture of Lexie. Her smile and beauty are everything I pictured them to be. Thank you for this wonderful gift!