Lone Cyprus

Lone Cyprus

Friday, October 14, 2011

Twitter? Yes, Twitter.

I'm not the best writer and that's gonna be evident by this blog. The thing is, I love Twitter. I'm kind of an addict. I happen to think everyone should be on Twitter, whether you actually Tweet or just follow others. So let me help you get started or give you a few extra people to add to your follow list. Trust me, I know something about needing to be entertained. I've got alotta time to fill.

5. Sarah Colonna @sarahcolonna
I can't describe how funny I think this woman is. She is my favorite female comedian and I got to see her live stand up earlier this year. She often tweets sarcastic, irreverent jokes and rips on her castmates. She makes fun of herself including her dating life and where she's from. I never skip over her tweets and honestly, that's saying a lot. I can only say that about a fraction of the people I follow. Sarah's a roundtable regular and writer for Chelsea Lately and After Lately. She recently wrote a book called "Life as I Blow It" and also has a sitcom that just got picked up by the same name. Sarah's just plain funny and somehow she makes me feel like we could sit down for a drink and chat and be friends. Maybe that's just wishful thinking.

Nah, she'd like me for sure.

4. Lil "C" @kingofkrump
Look guys, there's something about me you don't know. Or I don't know, maybe you do. I confess, I LOVE hip/hop. The culture, the music, the dancing, all of it. I get it. It makes no sense. I grew up in Southern Indiana in a town of 8,000. The definition of midwestern small town. I can't help it, I've fallen in love with it in my adult life. So, who is Lil C? He's just the man responsible for an entire genre of dance called krumping, that's all. I don't want to cross any lines and explain krumping as hip/hop dancing. It's not. If you wanna understand it better, I highly recommend you look up the documentary called Rize. It's inspiring and shed light on a way of life I didn't know a lot about. I realize my limitations in understanding something that came from a world I've only read about. I just know that Lil C is an innovator, a creator and he's inspiring to watch and listen to. He dances, he raps, he choreographs, I don't know, he probably makes magic too. I follow him on Twitter to get access to his most recent work in music and dance. He's also got a way with words and is often poetic and thoughtful in his posts. He purposely misspells words and makes up his own. Maybe I have a little crush, but that doesn't mean I'm not objective.

He's def ##Bucc!!!

3. Jeff C @ajeffclawson
So, Jeff's not "famous" and you may not have ever heard of him, although I wouldn't be surprised if you did someday. Jeff's a teacher in the Indianapolis area and he's actually a friend of a friend. I know him from his work at local improv company, ComedySportz and as a member of long form sketch group, Three Dollar Bill. I only marignally know him but I gotta tell you, to me, he's one of those people whom you meet and you like instantly. And man, is he funny. I have so much fun watching him on stage and his physical comedy makes me laugh more than anyone else I've seen. Obviously, when I found he was on Twitter it was a no-brainer to follow. I haven't been disappointed. He uses really intelligent, sharp humor. I love that he has an ongoing commentary on different subjects using hashtags like #MyDumbassSuburbanProblems, #ILoveMyWife, and #BewareDaHorsies. If you choose to follow Jeff and you don't at least chuckle to yourself once a day, then I don't know what's wrong with you.

(No pressure, Jeff.)

2.My number two has been deleted because I changed my mind. Just follow me on Twitter if you wanna. @bethfortwendel

1. Stuart Scott @stuartscott
STUART SCOTT IS ONE OF MY FAVORITE PEOPLE I'VE NEVER MET! I'm serious when I tell you that following Stuart on Twitter has changed my life a little. Lemme explain. First of all, if you don't know who Stuart is, you need to watch ESPN like normal people. Seriously, I started following him because I LOVE sports. All my life I've been the girl who would choose ESPN or some baseball or football game over sitcoms and soap operas. I don't know what I'd do without ESPN and Stuart has always been my favorite Sportscenter anchor. These days, watching sports is a kind of escape for me. There's competition, heartfelt stories and hope. I love it and I get wrapped up so easily. Scleroderma has landed me on the couch more so than I appreciate and televised sports and sports news is a Godsend. So, thanks to ESPN for that. And Stuart entertains me. He's funny and uses clever, cool catch phrases. I wanna be cool like Stuart.

Second of all, Stuart is an awesome father/person. He uses Twitter often to tell stories about time with his children and the joys of parenthood. He shares his love for his kids and his hopes and dreams for them. He constantly praises them to all of us complete strangers and celebrates their unique qualities. I'm so impressed by this because I see parenting as THE most important job any one of us could have. I don't have children, but if I did I would want to have children with someone who views parenthood like he does. It's refreshing.

Third of all, Stuart has inspired me. He has cancer. At the time I'm writing this, I don't know what his current status is, but I know that for months I have read post after post of positive words and an attitude that I wish I could manufacture for myself. He has shared his journey through chemotherapy and tests with honest feelings about fears and triumphs. Each Tweet, each day that I read that has showcased his ability to look at life as a joy and something to be lived and not survived, has encouraged me. As a result, I felt strength build in me as well. Seems strange that someone I don't know and who only communicates through tidbits of his life in 140 characters at a time could affect me that much. But he has. Even after I've lived through the disappointment of being rejected for a life-saving stem cell transplant, I decided to push through all of it again in hopes of getting a lung transplant. All the paperwork, the tests, the poking, the proding, the hopes, the fears, the pain, all of it. I'm willing to do it all again based solely on the hope that I will breathe normally again. It's not likely Stuart will ever read this but I'm gonna say this anyway:

Thank you. For being honest and open and for sharing your struggle and your journey. Your story reached me and moved me.
Stay strong,

Thursday, July 28, 2011

My lungs made me do it.

It's time for another update. I'd love to say that things are looking up. Ya know, it's positive and good things are on the horizon. Truth is, things are unclear, heavy and have been coming to me bearing my good old friend anxiety. There have been some wonderfully good things recently too though! I took a couple trips this summer and got to check off many items on my bucket list. In many ways it has been a very happy, fulfilling summer. I sat in the Chicago Cubs dugout, tried new, exotic and ethnic foods, added another stamp to my passport and even enjoyed my first experience on urban/metro transportation. I've seen some dreams of mine come true and I'm excited and grateful for each one. Happy, thankful tears have followed each new experience and my life and relationships are richer and fuller having shared them.

What in the world could overshadow such blessings? Unfortunately, I've found that interstitial lung disease can. No matter how hard I have fought to push the thoughts and the ideas out of my mind, the reality of what is happening to me and what I'm facing, it seems they always linger. Like a big ugly wart on an otherwise lovely hand. It's always there and there is no escape. Literally every step of every day is affected by my inablility to breathe well.

It's funny because I have, at different times in my life, found myself inspired by people in desperate or bleak circumstances. Those people who always seem to be positive and have this message for the world that no matter your struggle, life is good. I find myself wishing I could manufacture that attitude or outlook. I'd love to be the kind of person who could be 32 years old, dying and still telling everyone how wonderful things are. But I just can't do that. There is nothing extraordinary about me. I'm just a regular person who has scleroderma and whose lungs are slowly becoming rocks (almost literally). So I need others to understand that yes, wonderful blessings still come in my life. And yes, I am indeed thankful for them. But more than that, I feel like life is just hard. For real. THIS. SHIT. IS HARD.
Frankly, I have become such a complainer and so intolerant of things that I feel are stupid or a waste of good time and energy. I'm not good at faking any of it. I try but that seems to take energy I don't care to spend. On the flip side, I definitely think kindness is important and I do make efforts to be kind but man, the trivial things just get to me.

In about a week I'll start a process of pre-qualifying for a double lung transplant. (I can't believe I actually just wrote that sentence.) It's crazy I'm here. Already. There's a lot riding on these first few tests. Actually, my life is riding on these first few tests. Basically they need to know if my esophagus is working well enough not to destroy new lungs were I to get a transplant. The long and the short of it is that if my esophagus isn't functioning properly, I'm immediately eliminated from the possibility of a transplant. If it seems to be working ok, then I can continue on with more testing and searching for a hospital with a program that will accept me. And yes, we are this point. My lung function numbers have steadily decreased since my diagnosis and so much so over the past year that my oxygen use has doubled and my oxygen saturation has dropped, at times into the 60s without supplemental oxygen. (If you're not sure what that means, a quick google search will clear it up.)

So all this to say, sorry if I've been a jerkface to you at any point but the truth is, I don't appreciate this whole situation much and it's not really bringing me a lot of warm fuzzies. I'm doing the best I can with what I have but I admit a lot of times the best I can is just a lot of crabbiness. Maybe some epiphany will come that changes my attitude and brings some acceptance and understanding but for now, know that in my heart I'm not really a jerk I'm just a little pissed off at life. So, uh sorry I guess.

Tuesday, March 8, 2011

Brand New

I've been thinking about the title of my blog. "The Journey to a Brand New Beth". I named it in the midst of the fundraising campaign to raise money for a stem cell transplant. It made sense at the time. I thought I would have this transplant and it would transform my life. I would have remission and hope, hope that my health would be brand new. Since I was rejected for the transplant, it's been difficult for me to see how that old title I chose could still apply. It seemed to me that the same old Beth wasn't becoming brand new. I was becoming a sick girl on a quick road to a short, stationary life.

And then a few days ago I was looking through pictures I had been tagged in on Facebook. I came across a picture that had been taken of me 10 years ago by my very favorite International student at college named Yoko. I was completely shocked at what I saw. I studied the picture and then clicked back to a picture of myself taken just a few weeks ago and couldn't believe the difference. I clicked back and forth and back and forth. An unbelievable thing has happened to me. I absolutely LOOK like a brand new Beth. Feel free to take a look at the difference:

Ten years have passed between these photos but my spirit feels just as alive as I was at 22yrs. I've learned a lot, some big lessons and a lot about love.

#1. I've learned to roll with the punches where my physical body is concerned. Ten years ago didn't look that great but I was VERY healthy. Now, I look ten times better but my body is incredibly unhealthy. Life's funny like that and physical beauty means so little when you're forced to get down to the core of who you are.

#2. Nothing on this planet can replace the love and importance of family and a support system. I'm the luckiest girl on the planet to have people who have sacrificed and continue to sacrifice time, money, work, and many times their own personal preferences to help meet my needs. I hope that when things get hard in your life, and they will, that you have even a fraction of the love and support I have. They make me strong and happy.

#3. I have learned over these 10 years what love is. The completely unselfish, 100% committed, humbling, real thing. And her name is Sandy. My mom has been my biggest teacher, supporter and example of love. She is responsible for me being who I am. (So if you don't really like me much, you might wanna take it up with her.)

#4. This is the biggie. Here's my single biggest passion and I've learned all about it. TIME. As in, it's here. And it's passing by. That picture from 10 years ago shocked me, but I can tell you this, when I look in the mirror I don't see that big of a change. Almost like no time has passed. It just goes so quickly and before you know it, a decade is gone. If I had known at age 22 what I know now, that I would have a progressive, incurable disease. That my lungs would fail me and my biggest dreams would always be out of my reach, OH how different these ten years would have been. The trick here is, we don't get that advantage. None of us. So stop and think now. Stop wasting your time. Here's what matters: God (or whomever/whatever you believe in) and your human relationships. And that's it. Period. Take care of what's important, stop being so serious and get over yourself. Stop worrying about failing someone else. Stop letting someone else tell you what you're worth. Stop waiting around for your future to fall in your lap. Stop being selfish and start being kind. And go live. Enjoy this time because you don't have a lot. Cliche of all cliche's but it's true.

The thing is, I am becoming a brand new Beth. You can see it in the pictures but more importantly I can see it IN me. I want to grow more and learn more and love more. I'm tested daily and trust me, I get testy! But I don't care about money or fame or status. I just wanna love and be loved, just like everyone else. And I'm not afraid to admit it!

The brand new me will come. I'm still on the Journey.