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Life: Redux

Posted Apr 01 2014 4:13pm

Hello, hello! Spring is upon us. Cue the classic analogies to new love, cleansing, and rebirth. Yahoo!

I wanted to take a break from all the info grinding and talk about something very personal. It doesn’t really relate to UC or my j-pouch. If you don’t feel like reading on, peace out! I will catch you on the next blog post when I talk about my 12 Day Challenge with Goodbelly Probiotics. For those of you still sticking around, right on. Off we go. 

For all the sharing I do regarding my journey with IBD/surgery, I don’t really delve into my personal life. Yes, I have spoken to you all about sex, food, self-image, and the embarrassing situations that UC threw at me. I feel compelled to share something with you that has changed me just as deeply, if not more so, than Ulcerative Colitis.

Last May, my youngest sister Alexandra passed away suddenly. She suffered from sickle cell beta thalassemia, a disease she was diagnosed with at birth. There is currently no known cure. Basically, her body produced abnormally structured blood cells. As a result, her own defense system was destroying those cells and rapidly creating new blood cells to compensate for the loss. This, in turn, caused an overproduction of iron. If the body has too much iron, it can cause fatal complications (such as organ enlargement and heart failure), and most patients die early as a result. The disease is incredibly rare; there aren’t many treatments beyond monthly blood transfusions. Even then, the average lifespan of a sickle cell patient is 30. Alexandra was only 20 years old.

Alexandra wanted to be an elementary school teacher. She would have been a damn good one too. I’m not saying that because I have sibling bias (maybe a little) but I have a whole folder filled to bursting with glowing notes and illustrations from second grade students she taught during her classroom internship. Children are the most brutally honest among us. That should be evidence enough. Alex had over 600 friends on Facebook and managed to keep up with almost ALL of them. I can barely manage to get together with my own small group of friends once a month. The feature everyone identifies most with Alexandra is her infectious laugh. Loud, long, and shrill. A belly laugh at its deepest. The kind of giggles that send you reeling more than the joke itself. Her favorite season was summer for obvious reasons. A baby born under the sun of Miami, she never lost her love for the warm air and water. She hated Chicago but loved everyone she came to know who resides here. She was messy and hated cleaning. Disorder was the order of her life. Alex had dark, curly hair. Bouncy, shiny. She always attempted to straighten it (although my younger sister Kristen and I confessed to curl envy). Hair products lined her vanity. Alex loved bright nail polish in neon colors. Alex introduced me to lots of new music. She never failed to be in the know when it came to upcoming artists. She had great hipster moments: “You listen to (insert band name here) now? I listened to them way before you did! You said you hated them.” Everything was extreme. Bigger than life. She was devastated when she found out the show “The Hills” wasn’t real. Like hiding under a blanket and screaming. She’d be pissed that I brought that up, but it makes me laugh. I admire the passion Alex expressed for ALL the things she enjoyed. The biggest sweet tooth I have ever known. She had three cake pop kits. Loved to bake with her friends and concoct all kinds of outrageous goods. Everything from chocolate chip Oreo stuffed cookies to rainbow layer cakes. A talented performer and improviser. That girl was fast on her feet. Funny as hell. Comebacks were her specialty. Never missed a beat onstage. She couldn’t sing (neither could I) but won the most enthusiastic voice in a group. The girl had some funky dance moves though. Silliness was her specialty. She breathed it in like oxygen and spread it to everyone nearby. Alex adored a good mystery, especially if it was scary. We used to play the Nancy Drew mystery games on the computer all the time. Girlfriend loved horror flicks. Loved the adrenaline rush from being spooked, frequently braving terrifying films and haunted houses with her friends. It should be no surprise that Halloween was her favorite holiday. She was working her way through college at Target with my sister Kristen. They were known as the “Target Twins.” Well-loved and sought out by co-workers and customers, the two of them made the best “Fast, Fun, and Friendly” pair on the floor. Alex has the most amazing variety of friends. From all walks of life. All ages and talents and aspirations. She didn’t make it a habit to judge people. She was open and embraced everyone, no matter how flawed or damaged they appeared to anyone else. Alex saw lovely things in every person. Her beautiful olive colored skin left friends and acquaintances to ask my family if she was adopted (as K and I are both of fair complexions). No frickin’ way! Alex was blessed with the Mediterranean skin and hair of my mother’s Greek genes. Sun kissed and happy. She was gorgeous, through and through. Sassy, lively, and bright. A true sisterwoman. She didn’t give a flying fist of fire what anyone thought of her. 


I could go on for days. I have such fond memories of her. The loss of my baby sister has shaken me to my very soul. I cannot accurately express how much this has changed my family. I’m not sure I want to. At first it felt like picking up pieces and starting over without her was wrong. Like leaving her behind. One can rationalize that the world will continue to turn. Time heals. “It will get better”. The infamous phrase pushed in my direction at every available opportunity in an attempt to help. Because it’s confusing. Because it’s awkward. Because it’s hard. For everyone who knew her. Even just a little bit. Because she left such a mark on us all. 

I have struggled with a horrific bout of depression since that time. For the first few months after Alex departed, I worked hard to be strong for others. I told myself she would want me to move forward; live life passionately and openly. It was around that time grief truly took hold and settled inside me. I didn’t know how to be strong anymore. I didn’t want to be. Grief buried itself deep…with fierce roots. Nothing felt good. Not friends. Not work. Not theatre. Not food. Not writing. Not family. Absolutely nothing. I began to hate, hate, hate. Myself more than anyone else in the world. I wondered if I had been a good enough sister. Was I too mean? Did she know how much I love her? I wondered about her death. Why did she have to go? Was she in pain? Did she just fall asleep and dream of pleasant things? Could something have been done to help her?

I forgot how to be social, or simply chose not to be. It didn’t make any difference to me whether my friends stuck around or not. I assumed they either didn’t care or felt so awkward being around me that they preferred to stay away. I lost all gusto for my caregiver work. Looking after children became a lonely job for me. During their nap times, being alone with my own thoughts was rotten. A spiral of self-loathing twisting round and round. “Don’t be so lazy. Get up. Do something. Fix this. What’s wrong with you?” My body started reacting negatively to all this hatred. Aches and pain in my joints and back manifested due to the tension and stress I continued to build upon myself. I curled further inward, thinking I was protecting myself from others. I didn’t want to upset anyone else, especially not my family. I cried daily, shaking violently and sitting on the ground for what felt like hours. Hiding in the bathroom to avoid showing tears in public or at work. Sometime before the holidays, something gave way. I physically could not go to work anymore. I wasn’t sleeping or getting enough nutrients. I felt sick constantly. My fiance Tim was doing his best to give me support (and I thank my lucky stars every day he is in my life), but I knew my depression was putting stress on him too. Guilt and anger crept in. “Alex wouldn’t want you to feel this way. Stop being such a crybaby. Suck it up.” It was so easy to be mean to myself. To punish myself for not doing more. For not picking myself and getting better. I didn’t want to talk to anyone. To burden them. The holidays passed in a haze of alcohol and false smiles. It felt wrong not having Alex there. So damn wrong. My parents and K seemed to reflect what I felt in their eyes. I wanted them to be happy. I hated seeing them so sad too. Fumbling to connect with them, and falling short every time. I resented the people that had all their loved ones with them. Anger overwhelmed me. I’d hear someone running down the hallway of our apartment building and suddenly recall running downstairs to the car the morning my dad called to tell me Alex died. I’d start shaking, panicking. I’d wake up in cold sweats hearing my own screams in my ears. “Oh, my God! Oh, my God!” Hearing my dad crying and telling me to be strong. What could I do? Where could I go? 

What’s that phrase? When you are at the bottom, the only place left to go is up. So I started making the climb. I began going to therapy. Beginning to open up and talk about all the things I was holding inside me. The grief, the sadness, the guilt, the stress. The dysfunctional thoughts and self-deprecating pattern I had fallen into. Even post traumatic stress. It appeared that my life lost all sense of purpose, meaning, and structure. It’s been four months since I began going to therapy. I attend my sessions on a weekly basis. It helps. It helps a lot actually. More than I thought possible. I can feel myself healing. In bits and pieces. Finding joy in small moments. Learning to love myself as an individual. Not to judge. To forgive. To rest. All this and more. Reintroducing the practice of yoga into my life has given me a new goal to strive toward. There is an understanding and acceptance of self within asana practice that gives me great joy. I have also started meditating to calm my overactive mind. Learning to find quiet moments has been tremendous for me. My mind wanders, yes, but I’m getting better at escorting it back to the peace, the calm, the breath. It is an unbelievably powerful tool. I had my doubts. I was proven wrong. Thank goodness. I see my friends more often now. I am working again (just part-time but the little one I look after keeps me very busy). There is a lot of change happening to me right now. Going with the flow is all I can do. All I want to do if I’m being honest. It is a journey. I use that work a lot. I don’t really know how else I can possibly describe it. It ebbs and flows. Each day is different. 

I still have bad days. They are less frequent. I allow myself to have those bad days and move on. Not every day is perfect, but that’s okay. “Normal” is not something I expect out of life anymore. I don’t even know what that means to me. The loss of Alexandra has left a hole that cannot be filled. Well, perhaps I shouldn’t say it that way. That sounds so empty. Alex is part of me…and that girl was SOLID. She makes me smile and laugh and cry. She is with me always. She is here even now, as I write, clumsily trying to put down in words all the things I have felt. Pouring all of this out for strangers in the hopes that they understand and share this grief. It helps to know you are not alone. Loss is something we all have to bear at some point in our lives. How we overcome that loss makes all the difference in the world.

I suppose the real reason I wanted to share all this because I wanted you to know Alex. She was too damn cool. Really. She would have loved you all. I know I do. I wasn’t sure I was ever going to talk about Alex on this blog. I’m glad I did. Thank you so much for sticking with me through this journey and (hopefully) for joining me on the one to come. You mean so much to me. Even if I never get to hug you or laugh with you or hear your story. I love you guys. Your e-mails and comments have inspired me to keep this blog running. Sometimes life pushes you down, drags you through the mud, and kicks you in the gut like a school yard bully. I am beginning to understand that if I can stand up, clean myself up, and go back to school the next day again (even if I might get hurt) then I will be all right. I know that if I get dirty, I can always go home and clean up again. Or ask the bully if she needs a friend too. 

I send all the love in the world to my family, fiancé, and friends. I send hope, strength, and love to all of Alex’s friends. I send positive thoughts and good vibrations to all those who are grieving and healing. We are not so different as we seem. I share my experiences with you to help myself and others in earnest. Thank you for this gift of life and learning.  

So what’s next on this journey for me? I have been accepted into an intensive program to complete training as a yoga teacher. The course begins in June and runs for two weeks. I’d like to chronicle this new phase of my journey here on the blog. Tim and I are getting married in September (in a theater like the proud performing arts geeks we are!) so this summer is going to be mighty busy! Exciting possibilities and new beginnings to look forward to!

As I mentioned in the beginning of the post, my next feature will be recording my experiment with Goodbelly Probiotics. I talk a great deal about the benefits probiotics have provided for me. I have gotten a few e-mails asking me if I have ever tried this line of products for regulating digestive health. So, at your request, I will be conducting my own Goodbelly 12 Day Challenge and sharing the results with you! For more information on the challenge and Goodbelly Probiotics, check out  

Wishing you all the best of health and happiness,



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