Hi guys!
I'm so proud to be able to share with you my very first guest column.
When I created this blog in March, my objective was always to share not only my own writing, but I also wanted to provide a voice to those who otherwise wouldn't have one.
I'm thrilled and honored to present to you the very first guest column on kjosbigmouth.com.
In the spirit of full disclosure, I did work with the author on editing the piece, she'd never written anything before in her life. But her truth, rawness, and maginficent spirit just blew me away.
Following her story, I'll share some more important information on this magnificent warrior.
Until then, I hope you enjoy her heroic story of terror, hope, joy, strength and the extraordinary power of love.
I'm so honored to share with you...
Way back in 1996, I was diagnosed with lupus. Little did I know that that was just the
I have two choices:
I'm filled with rage. I keep thinking about how for years I kept telling all these doctors
and specialists, the people I trusted to help me get better, that I couldn't breathe.
But as any auto-immune patient will tell you.....most of us are used to being treated
either like hysterical hypochondriacs, drug-seekers or drama queens. And by the time
all these Doctors with their fancy degrees finally saw that I was telling the
truth, it was too late.
Thank you so much for reading.
I hope you found it as powerful & truthful as I. And I sincerely hope reading this has put any dramas or annoyances or money problems or paper cuts back in perspective.
Lena has one last wish...She wants to come to LA to see my Lupus Doctor.
If you can spare a few dollars, I believe hers to be a worthy cause. I've gotten to know Lena & her daughter, and they're truly beautiful souls.
But what's most important is, I hope Lena feels good about this tribute to her incredible spirit. I'm so proud I'm able to give her a voice.
I'm so proud to be able to share with you my very first guest column.
When I created this blog in March, my objective was always to share not only my own writing, but I also wanted to provide a voice to those who otherwise wouldn't have one.
I'm thrilled and honored to present to you the very first guest column on kjosbigmouth.com.
In the spirit of full disclosure, I did work with the author on editing the piece, she'd never written anything before in her life. But her truth, rawness, and maginficent spirit just blew me away.
Following her story, I'll share some more important information on this magnificent warrior.
Until then, I hope you enjoy her heroic story of terror, hope, joy, strength and the extraordinary power of love.
I'm so honored to share with you...
Lena's Last Stand
by Lena Zeller
"Judge me all you want but keep the verdict to yourself"
author unknown
Our eyes met in the mirror.
I've never seen her look more beautiful in her entire life than she did at that moment. We both knew this dress was "the one". I was shocked and mortified to realize I was sobbing with loud abandon, drawing stares from the other customers in the store. I knew I was doing the ugly cry, which is completly out of character for me, but how could I not?
I wanted to explain that my hysteria wasn't simply because shopping for your child's wedding dress is one of the most important, powerful, joyous, and special experiences a mother could ever share with her daughter.
I wanted to let these impossibly lucky women understand how blessed they were. That my tears were the result of being slammed out of no where by a brick wall of sorrow, grief, terror and deep, bone-chilling regret.
Because I now know I'll never see her wear this dress again. (And not just due to the fact that she's groom-less.)
You see, I'm dying.
A few weeks ago, I was told that I have less than nine months to live. At best. At worst, I'll be gone within the month.I've battled different medical horrors for over 2 decades.
Way back in 1996, I was diagnosed with lupus. Little did I know that that was just the
beginning. Over the years, and so many Doctors and specialists I lost count years
ago, I've relentlessly battled so many issues, ranging from stage 4 kidney failure to
Ulcerative Colitis. I'd list the rest of the diseases I've grappled with every day for the
past 20 years, but it would take too much time. Time I no longer have left.
Ulcerative Colitis. I'd list the rest of the diseases I've grappled with every day for the
past 20 years, but it would take too much time. Time I no longer have left.
The hilarious irony is, none of these are why I'm dying. The cause of my imminent
demise is due to a disease with a disappointingly benign and relatively innocent
sounding moniker: "Shrinking Lung Disease."
demise is due to a disease with a disappointingly benign and relatively innocent
sounding moniker: "Shrinking Lung Disease."
I prefer to call it what it is: My Death Sentence. This disease is so rare, there are only
59 known cases in the world. Well, now there are 60. That's me, ole lucky number 60.
I have two choices:
I could do a new chemotherapy, which even if it was "successful" chances are
astronomically high that I'd die within 1 to 9 months of treatment, anyway.
astronomically high that I'd die within 1 to 9 months of treatment, anyway.
My other choice? Death by suffocation. By my own lungs.
Yeah, those are my choices. (Or what my doctors refer to as my "options.")
I'm filled with rage. I keep thinking about how for years I kept telling all these doctors
and specialists, the people I trusted to help me get better, that I couldn't breathe.
But as any auto-immune patient will tell you.....most of us are used to being treated
either like hysterical hypochondriacs, drug-seekers or drama queens. And by the time
all these Doctors with their fancy degrees finally saw that I was telling the
truth, it was too late.
So I die, and they'll think "Darnit, that's too bad" as they cheer their son on at his
little league game or giggle at a sitcom in bed with their mate or try to decide which
luxury SUV to buy this year.
luxury SUV to buy this year.
I'm a fighter. I've been kicking lupus's butt for most of my life. And my extraordinary
daughter has been by my side for every hideous, painful, boring, funny, heartbreaking
and devastating moment. She is why I've fought so hard.
But how do I begin to tell her I've finally lost? How can I fight when no Doctor has any
hope? It's as if I'm Mohammed Ali without arms. Or Dale Ernhardt, Jr. in a car with no
brakes. Or Greg Louganis performing the dive of his life off the edge of the Grand
Canyon. Or Baryshnikov discovering mid-dance that his legs have disappeared.
I'm scared of death.
I wish I wasn't, but I can't seem to help it. I keep wondering what I did to piss God off
so much. I have so many regrets. I should have finished school. I should have stayed
married. I grew up in a tiny town and didn't kiss peoples butts like the rest of the crowd
did. I've always been honest and spoken the truth. I spent the last fifteen years of my
life hidden from the world so I didn't get sick and make lupus worse than it was. I was
told that I need to stay away from germs or I could die. (That didn't work so good.) Is
my isolation why I've been chosen? My smart mouth? My brutal honesty? My many
mistakes? Why? Why? Why? WHY ME?
I've always had such simple dreams. I've never drempt of wealth or fame....I just
wanted to be loved. To be a good wife. A loving daughter. To raise a good human being.
To watch my daughter fall in love and marry a man who truly sees her spirit.
I can't look her in the eyes and tell her I'll never get to see her wear that beautiful dress
on her wedding day. I'll never be able to hold her children in my arms, or hear their
soft breath as I rock them to sleep. I'll never feel their hand holding mine as they
attempt their first steps. Who will she confide in, tell her dreams to, her fears?
on her wedding day. I'll never be able to hold her children in my arms, or hear their
soft breath as I rock them to sleep. I'll never feel their hand holding mine as they
attempt their first steps. Who will she confide in, tell her dreams to, her fears?
What about my mom who just had a massive stroke? How do I tell her that I may not
be there when she comes home? How do I tell my brother goodbye? I talk every day on
the phone for hours with him. What about my Daddy, who works to this day to
support my mom and me? He tries to tell me that God is good And I won't have to
suffer any more. My daddy is my biggest hero, yet I only realized this a few years ago.
I need more time. Time to love. Time to apologize to anyone that I may have been rude
to, because I was hurting or suffering. I need time to make sure someone will be there
to listen to my daughter and give her the best advice. I need to know who she is dating
and make sure he knows she is a princess and deserves respect and to be spoiled.
I pray there is a man worthy of her love. And I pray he has a mother who will love her
like I do.
I can't stop wondering....
How can I cram a lifetime into a millisecond?
Is there really this beautiful place called Heaven?
Is God really going to take care of me as my father tells me?
And, above all....how do you die gracefully?
I hope I can do it. I cry every day, thinking of my daughter in that beautiful wedding
dress. And I suddenly know that I will be with her on her wedding day. I'll be there
when she is rocking my grand babies to sleep. I will be there. I am in her heart, that
heart that is so full of love.
My greatest accomplishment in life is named Brianna Alycen and I will cherish every
second I have with her and my brother and my parents. I am blessed with the
biggest hearts in the world and they all love me.
My parents. My brother. My daughter.
I'm not ready.
I may not be lucky,
But I am blessed...
I love deeply, and I'm deeply loved in return.
Thank you so much for reading.
I hope you found it as powerful & truthful as I. And I sincerely hope reading this has put any dramas or annoyances or money problems or paper cuts back in perspective.
Lena has one last wish...She wants to come to LA to see my Lupus Doctor.
If you can spare a few dollars, I believe hers to be a worthy cause. I've gotten to know Lena & her daughter, and they're truly beautiful souls.
But what's most important is, I hope Lena feels good about this tribute to her incredible spirit. I'm so proud I'm able to give her a voice.
Love,
@kjothesmartass