Wednesday, December 5, 2012

Favorite Things

Oprah Winfrey once said she used to dread her Favorite Things show.  She said she felt guilty for the lavish materialism and felt foolish for encouraging adults to become utterly hysterical over things. Then, one day, Oprah had her own "aha" moment. It finally occurred to her that her Favorite Things show wasn't about the vast and ridiculous amounts and types of gifts. What the show was about, what it really meant for people, was the chance to discover, maybe for the first time, and to believe that just as much as bad events happen randomly and without warning, good events, good moments, good days happen equally as much and equally without warning. Oprah said she upped her enthusiasm and hosted the show with a brand new attitude because she now realized why there were so many tears, people falling to the floor, strangers embracing and crying together, something good happened in their lives. Something out of the ordinary struck like a bolt of lightening and left a deep and penetrating scar of joy. She believes everyone leaves with a tiny bit more optimism and a tiny bit more belief in the good.

After a traumatic accident, followed by a decade of illness, I began to give up on the good. My twenties were mostly spent suffering and struggling to stay alive, struggling to want to stay alive. I watched as peers headed to and from fraternity parties and endless nights out. I saw a life after college filled with sports leagues, dinner clubs, football games, tail gating, summer evenings at baseball games or playing softball. I watched as well and able bodied people woke up early, dashed to a job, returned home only to run or put on different clothes for an evening out. I watched all of this and wished so desperately to belong. I wanted to feel free, to feel as if I was choosing everything I did every single day. I wanted to feel the goodness life has to offer. However, my body was in charge, and its illness and needs ruled my life. I escaped its prison time and time again, only to be forced back into the solitary confinement of illness. The more I tried to be normal, the more my body fought against it. I saw many good things happening to so many good people, marriages, babies, exotic and interesting vacations, and countless adventures. I longed to attend music festivals, once again camp and sleep under the stars, hike over muddy and rocky terrain, and canoe and swim in a lake. I wanted to put on three inch heels and dance the night away in a hot and sticky night club. The twenties seemed like a time of freedom and fun, filled with countless adventures and milestones. My twenties were not filled with these things. I, instead, spent countless days in the hospital, had a blood transfusion the week before I was in a wedding, tried desperately to work more than twenty hours a week, all as my body continued to fight every urge, every desire to be a normal twenty year old girl. The optimism usually associated with this free and energetic time of life was little, if not gone for me. Over time, I expected bad things to happen. My loss of optimism or the expectation anything good would happen slowly disintegrated. I figured it was just easier to expect the worst rather than deal with the disappointment. But then, I had a night alone on the floor, where I had no other choice, but to beg and expect mercy and grace and it was granted. In that moment, I chose, once again, to try, even just a little bit, to believe in the good, believe in hope. It took a long, long time to eliminate the hateful and negative noise my active and ever present thoughts generate, but slowly and steadily I started thinking positive and good thoughts. I expected things to get better, I started hoping for a future. And with this attitude change, came a life change. I found the freedom I was searching for in the acceptance and respect of and for my condition. I became my own advocate, fighting for my own good. I also surrendered to my situation. I stopped pushing against the stream and started flowing with it. I am acutely aware I missed many regular, developmental life experiences, but I am also aware I have experienced, witnessed and learned a depth of irreplaceable knowledge and lived through many life altering experiences, only coming out stronger, more hopeful, and more aware of what is truly important. Mostly, I've learned to expect the good. Sure, the bad will happen, but so will the good...and that is the important part.

Last Saturday evening, after I returned from an immensely generous and equally thoughtful early birthday cooking lesson, given to me by one of my best friends, Kelly, I received a text from Eileen asking me to read a text she was forwarding to me from her brother. Eileen's younger brother, John, is very involved in The Miami Project to Cure Paralysis.
In 1985, Barth A. Green, M.D. and NFL Hall of Fame linebacker Nick Buoniconti helped found The Miami Project to Cure Paralysis after Nick’s son, Marc, sustained a spinal cord injury during a college football game. Today, The Miami Project is the world’s most comprehensive spinal cord injury research center, and is a designated Center of Excellence at the University of Miami Miller School of Medicine.  The Miami Project’s international team is housed in the Lois Pope LIFE Center and includes more than 250 scientists, researchers and clinicians who take innovative approaches to the challenges of brain and spinal cord injuries.
He asked Eileen if we could meet him in Chicago, on Thursday, to attend one of The Miami Project's fundraising events and if we were able to attend, the rest was on him. His generosity, thoughtfulness, and kindness made me weep and smile, all at the same time. Kelly, the oldest hen, would also attend the event, making an already wonderful night even better. The two other girls are away at college and Kevin works late into the evening. They were sorely missed, but very much there in spirit. My very sweet mom and my dog's favorite person, other than me, offered to keep her so I could go and feel comfortable knowing Belle was in the most loving and caring hands. My parents knew how much I needed this and strongly felt I deserved a get away after my long fought battle and felt it was the least they could do to watch Belle. The days preceding our adventure my thoughts were so good, so filled with hope and joy, I thought my head would burst. I wouldn't let a negative, debbie downer thought to even slightly cross my mind. To think, just a few short months ago, I wasn't sure if I would ever receive a clean infection report and now, in a few short days I would be going out of town, for the first time in seven years. Yes, it was just a day and one night and only a short distance away, but it is still out of town. We left early Thursday morning, just like we used to for dance competitions, only there were only adults in the car, no little girls. Time moves on, things change, but love stays the same. Even though the car was empty by at least four, it was still filled with the same laughter, energy, and life it always was. I could look back at anytime and see the memory of girls with Ipod buds in their ears and if we listened closely enough, we could hear them cackling. True to form and tradition, we talked the entire drive, never once turning on the radio. When we finally arrived in Chicago, we pulled up to our beautiful hotel and quickly noticed it was directly across the street from the event venue. How thoughtful.

Then, Eileen pointed out we were a block away from her brother-in-law's brownstone...the one with the twisty steps.

As we walked to get a quick bowl of delicious potato soup and a harvest salad, Eileen also made me stop and look at a restaurant we were passing. I, of course, was too busy craning my neck to see Ted Baker, Scoop, and the Waldorf Astoria, to even notice the restaurant. But, as I took a minute away from the big and gorgeous city all around me, and looked at the restaurant, I saw it was the restaurant we went to the night after Thanksgiving all those years ago.

The name Carmine's also has great significance to my journey...sometime soon I will share. 

We ate here the night after, the same uncle, who was now treating us to an extraordinary evening, rescued me from the genuine, but futile attempts of the I've had too many Manhattans dads, and carried me safely down the stairs of the brownstone and outside to level ground. It is the same restaurant I took six Advil, wore a wool turtleneck sweater and a down puffy coat and drank hot tea because my fever was so high, and tried to pretend as if nothing was wrong. And now, here we were, several years later, only this time I was well. It took days for the gravity of this moment to fully absorb, but eventually it did and now I can't let go of it. I can't let go of the joy, relief, humility, love, and freedom that come from visiting a place where I was once so sick, so afraid I wouldn't wake up or make it through another day. I just can't let go of the body chilling, soul awakening feeling that comes with a moment like this and I don't want to. Later, we primped and prepped for the fun evening ahead and as Kelly did my makeup and Eileen straightened my hair, I took a breath, I took a breath and realized, here it was, it was happening. A normal life experience. Girls getting dressed and all fancied up together. I may not have had it as much as I should have in my twenties, but if that sacrifice led to this moment, it was well worth it. The love I have and feel for the two people making me feel like a Real Housewife in a hotel room, is immeasurable and heart bursting, and to share this moment with them is worth a thousand years of waiting and sacrificing.

Kelly and me. Be still my heart. Watching her grow up has been an invaluable pleasure and I am forever grateful to her for always, always, understanding me, believing in me, trusting me to give advice, giving her own empathetic advice, and being the best darn fashion consultant that ever lived. If you think her face is beautiful, you should see her soul.

And Eileen. I think it is perfect she is peering over my shoulder. Many years ago, she stood for hours, with her arms crossed, forcing herself not to help for my own good, while I practiced folding and unfolding my chair and lifting it in and out of my car. She has always been behind me, supporting me, cheering me on, loving me, and most of all helping me to set and achieve the most difficult and life changing goals.  She never is anything but positive, even in the most trying of situations and constantly guides me towards the good. Love doesn't begin to describe my feelings for her. She also completely understands why I need to bring three pairs of boots for one night. 

When we arrived, I was kindly greeted by another person with a disability. It was a young man and he was with an entire table of guys with paralysis. I'm usually the only one in the room in a chair, but tonight I was not, I kind of fit right in. The evening was filled with fantastic food, flowing drinks, and extraordinary company. Each person knew a bit about paralysis. There was little I had to explain. Sitting down to talk to me, instead of standing while my neck aches from looking up, was the norm. The awareness was astounding. We were presented with mountains of information and floods of personal stories about the groundbreaking research and discoveries The Miami Project is currently funding. I urge you to check out their website and see for yourself. To think there is a possibility of walking again is difficult and scary...I don't let myself go there much. I feel I need to be most comfortable as I am and not cling to false hope. But, for the first time, I truly felt the possibility was possible. My dreams are now different and dancing again has inched its way back into the forefront of my imagination. I still remain content and confident in my current condition, but a little hope doesn't hurt now and then. I let myself believe in the possibility again. The night continued to amaze, not only because of the progress towards full recovery, but because of the conversation, the people, and the sheer enjoyment. We only snapped two photos because we couldn't stop long enough to pose. There was far too much fun and excitement to pause. Poor Uncle John will remain a mystery, for now. After what was an already magical evening, we went out to a bar. At first, my normal anxiety about bars crept in, I even moved away to a corner thinking I just had to get out of there, but then as the loving and caring people I was with found a more than comfortable location with chairs all around, I began to forget I was in a bar. I looked across and saw Kelly and Eileen and Uncle John. And it suddenly hit me, it didn't matter where I was in life, mentally or physically, these are three of the people that were there all along in one form or another. Through all of my struggles, countless cups of tea on ninety degree days, they were there, smiling just as big and bright as they are tonight. Sure, John wasn't there for the everyday nitty gritty like the girls and Eileen, but he was there, he was there enough to notice and to plan something so thoughtful, so needed, and so good. Something good that came out of the blue, unexpectedly, as if I was on Oprah's Favorite Things, all because of him. The possibility of good in my life is forever renewed.

After we returned home, I sat alone in my room, reunited with my happy dog, and cried. I cried and thanked everyone I could think of...I sat crying on my bed saying names out loud over and over. I couldn't stop remembering all of the good and all of the acts of kindness along the way. And as I struggled for breath amongst the sobbing, I shed my fear, my trepidation, and mostly and finally my expectation of the bad. And the gratitude and jubilant, hopeful wonder, they don't come from the material side of the trip, they come from the love, from the kindness, from the thoughtfulness....from the possibility that good things really do happen. So go ahead, expect them to happen and they will. Don't let the bad moments hold you back, they are there just as much as the good, and sticking them out and waiting for the good makes it all the better. Trust me, I, too, was once a non-believer.