Why start a blog at this point in your life Fanny (third-person references add dramatic flare, no?)? Good question. I was just watching a riveting episode of “Let’s Make a Deal” when I thought “STOP THE MADNESS! WHAT A STUPID DECISION!” and then I laughed at myself: is this really all there is to my life now? I mean, Wayne Brady is funny and all, but I have such a higher purpose and I know it. I can achieve so much … and I can fit a bit of Wayne Brady in along the ride.
Welcome. My name’s Fanny (yes, that’s my legal name). I’ve kind of grown up with the local notoriety of Madonna or Beyonce so I don’t need a last name (and with a name like “Fanny” is it really necessary anyway?). This is my first blog entry – ever, about anything. Not sure how I will achieve my objective or how it’ll be received but I know what it is I want to convey: in part, that everyone has a story. Everyone is 2 people:
1) who they portray themselves to be to others (public self), and
2) who they really are (real self)
So you can’t judge anyone because you don’t really know what’s going on behind the proverbial scenes.
In that vein, I don’t want to live in that grey-social media- persona- state-of-being-perfect all the time. Sure, I like nice things, who doesn’t? But the pics I post of me and my family and friends in designer clothes, hair, makeup done, blinged out, smiling and laughing is exhausting (although I do smile and laugh a lot; I’m a pretty fun/ny gal). Breaking news: I don’t normally hang out in Louboutins with diamonds on, my hair did and a designer dress on (but I do look good when I am, right? RIGHT?!?! I’m looking for confirmation here people!!). And don’t trust those people that want you to believe all they do is vacation and hang out like that.
But what about when all my hair fell out? Or when you could count my ribs because I lost so much weight? Or when I couldn’t even laugh because I couldn’t muster up enough energy? Or when I have tubes sticking out of every part of my body feeding me, breathing for me, draining me, sustaining me? I sure can make some of those moments look glamorous. And yes, you read right: those aren’t hypothetical situations. If I could summarize my truth in one paragraph, here it is:
I was born with cystic fibrosis but not very many people knew at all because I was asymptomatic most of my life; it never really impacted my life experiences though (I had a great childhood). I graduated from 2 law schools, I fell in love with my best friend (no, not my childhood female best friend, although I do love you honey J ), moved to Chicago, got married and got pregnant shortly thereafter (potent little buggers!). Everything was perfect, until my 2nd trimester when I started experiencing difficulty breathing and caught pneumonia. I delivered my son after carrying him to full term, naturally, in July of 2011 (happiest day of my life) and by October of 2011 I was on oxygen full time at 10L/min because my lungs were irreparably damaged and failing. March 16, 2012 I was officially placed on the waiting list for a double lung transplant. May 29, 2012 I received a life-saving double lung transplant at Loyola University Medical Center – I wouldn’t have made it much longer had I not. I have since dealt with A LOT of transplant/medication induced complications and continue to fight for the life I deserve, but more importantly, for the life my husband and son deserve. My baby is the reason I BREATHE (don’t take that simple function for granted).
PHEW!!! Do you know how long I’ve been waiting to shout that from the social media mountain tops?! There. I’m sure there will be a lot of whispers and messages between acquaintances (“did you know?”, “she looks ok”, “I can’t believe it, she masks it so well”). I’m here to tell you I’m not masking it anymore and neither should you. Now, obviously I’m not assuming you’ve endured the same difficulties as me by addressing the VERY niche market of CF’ers or those who have endured a lung transplant; I want to spread a universal message of acceptance and value regardless of the insecurities you have due to your own hardships and perceived flaws. There will always be people to have something to say (especially about me because I’m a character!). There will always be people who judge me and you (whether it’s negative or positive) but here’s my thought process…WHO CARES?! (I know, I know… how eloquent and thought provoking of me, right?!).
Whether you like what I have to say, or not, please be advised that my perspective is framed differently than most others. It’s neither good nor bad; it’s just my own and I claim it. So don’t treat me, my husband, my son, my family or any of my close loved ones any differently because of said perspective. Please feel free to ask me questions, express your concerns, offer your opinion…whatever. Just don’t approach me any differently than you would have yesterday. I don’t accept sympathy very well and I don’t expect to be given any allowances because all of a sudden I’m considered “fragile” and “sick” by those who didn’t know any better before reading this. I’m neither of those things. So, I’m using this platform to spread my message but also to provide social commentary (because there aren’t enough blogs out there now that do, right?!). And yes, it may be colorful at times, but hey…would this entire endeavor be interesting if it wasn’t?
I just hope this little glimpse into my story has given you pause; maybe all the effort we put into our ‘image’ isn’t worth it. We all mask who we really are to some degree, so maybe, just maybe…the real ‘you’ is enough. It has been a long time coming and a very difficult process, but I’m beginning to accept that the ‘real me’ is more than enough. I’m fan-frickin-tastic, not despite everything, but because of everything (and humble too, did I mention humble?!). Stay tuned…in the meantime, just breathe.
Great job Babe! I love you and I’m so proud of you!
Hells ya!!!! Proud of you and im on Via Rail toronto bound with the boys and i just fist pounded the air right now!!!! Spread that education and awareness. Proud to call you a dear friend. You are Fanny always and forever – you remain humble, but let them know 😉
Love you! Amazing post xoxox look forward to more!
Well done Fanny! I think what you’re doing is brave and admirable. You should be proud of what you’re doing. You are helping/changing lives because of it. Keep on keepin on…
I don’t think I’ve ever met a more stubborn, opinionated and stronger person but I think that’s what has given you the strength to endure everything you’ve gone through. As your big sister, it’s easy for me to say that I love you and I’m in awe of you. As I’m sitting in your beautiful house with your awesome husband and incredible son, you once again sit in a hospital, dealing with another complication. Your body has been through so much but your mind, spirit and heart give it strength. Just before your transplant, you were so sick it scared the shit out of me…all of us. You couldn’t even walk from the couch to the kitchen without being out of breath and exhausted. A few months later, watching you run through the rain, laughing, trying to beat us into the movie theater…that’s when I could breathe easier. I knew you’d beat it. If anyone could, it’d be you. You’re an inspiration to us all and I truly do love you.
What a powerful message. Thanks for sharing! Looking forward to reading more!
Bravo Sou!!! Thanks so much for sharing truly inspiring and got me all sappy, thx!!! I think your awesome Fanny and so happy we became friends!!! All the best!!!
You are one powerful woman! You are so strong, so positive & so blessed! I’m lucky to have met u & now call you my friend!
Fanny you had me laughing and crying. So incredibly proud of you!! You have many blessings in your life. The gift of verse is definitely one of them. Continue to write, inform and inspire others. I definitely was today. Xoxoxoxoxoxo
Fanoula, I am so proud of you. This is amazing. Your first blog moved me to tears. Keep at it. You rock! Love you!
Fanny, you have always been magnificent and you always will be!!!❤️
What a great way to tell your story! A great read, and very true in every sense. Good for you Fanny, your husband and son are lucky to have you in their lives. God doesn’t give people things they can’t handle. Keep being the strong woman you have always been, it will continue taking you on this wonderful journey.
“Mary, you drunk?”
Mihalis: “Just for case, take out 4 rye breads”
Ps I love you. Thanks for sharing. Now I understand why you were so hard on me.
I was brought to tears many times throughout your first blog. It read as if you were right next to me saying those words. Powerful is an understatement and I cannot wait to read more. Remember what I said…God’s miracle!
Thea Fenche, the goal was to not cry today. Unfortunately, the goal has not been met, but I can’t even be upset. I’m so proud of you for finally doing this! I know we don’t always see eye-to-eye on things, given that we are possibly the most stubborn members of the family, but just know that I love you more than I know how to express, and how happy I am that you’re still here with us today after everything that’s been thrown at you. Not many people would have been able to survive what you’ve gone through, but not many people have your stubbornness to prove the odds wrong and sheer force of will to survive. I didn’t understand when I was younger why you always had to go take your medicine in your room, you why you had to take your pills with dinner, or what the family meant when they said you were sick. You were just Thea Fenche who liked to go places with us and buy the best Christmas presents and keep us up all night when we stayed at Yiayia’s house, talking to Julie on the phone. You were just Thea Fenche who gave me my first book of Shakespeare’s works (yes, that MASSIVE textbook you had) and knew I would understand it even when people thought I was too young. As I got older, your illness was just something you had, something I couldn’t grasp the seriousness of, simply because you didn’t look sick, or act sick. I distinctly remember being at work when we heard a donor had been found for you. Yiayia had turned around halfway back home, my mom told me what happened and left work before the shift had properly started. I had the same feeling I remember having when my mom had her brain surgery; it was an odd mix of immense joy and crippling grief. Joy at the prospect of you getting better, but grief at the thought of it not working. I cannot be thankful enough that you are still with us today, not only because out of everyone you deserve a long, happy life and life would not be the same without you, but because your son still has his mother, and he would not be himself without you.
Preach, sister friend. I will like and share and support you. Always.
Great job Fanny. I learned a lot, as I only knew part of your story (I guess I don’t ask enough or the right questions!). Well done!
Wonderful work so far, Fanny.
I am waiting for your take on the article showing Canadian CF patients live longer than US CF patients.
Thank you for sharing Fanny! You must tell the story of your stand in booty!