A 'good journey' of promise

There is nothing to put age on you like returning to the former stomping grounds of your college campus...and at last, realize you can no longer pass - even by a longshot- for an undergrad student. Trust me, I tried yesterday- sneaking back to my old dorm. 
Now I am an officially seen as a card-carrying alum- might as well face it. With all affection and reverence, of course.

Yesterday as I gave the keynote speech at the 2014 Woman of Promise awards, I realized how far I have come since the time I sat as a petrified freshman in that same auditorium in which I was now taking the podium. 

I looked up in the audience and saw "Denny", the professor who changed my life- forcing me to stop, plow forward and believe a four year college education was not only doable, but within my reach. He had pulled my transcript for our first meeting scratched his chin and said "18 credit hours...18 credit hours," he repeated. "18 credit hours of college level work in high school...That's impressive." 

 For a young woman whose 'then-life' had been filled with nothing but chronic illness and high school teachers who graded and returned my assignments with little other than casual obligation, someone who had been written me off as the 'sick-kid' or the school phobic, this was a pivotal and monumental idea. Someone could be impressed by me?
The kid who was perhaps doomed to a life of scrambling just to strive for mediocrity and normalcy. How could I ever impress anyone? 

I was happily and joyously wrong.

Whether Denny's exact four words were "I-believe-in-you" or not...it was the clear and solid message to an 18-year-old who had spent all but brief flashes of her high school career between being bed-ridden or wandering through a constant fog of cognitive dysfunction from an illness no-one really could demystify.

I kept looking at him, remembering where I was then...and how long it took me to get from there (knees knocking in a freshman 101 class) to delivering a keynote before the journalism school. 

I told the crowd of students that those four words changed my world. They did. 

Though Denny wasn't the only voice at St. Bonaventure who told me I could do it...his was the most constant. He was my advisor. His voice was a stern but loving echo in that time, one fraught with fear and frequent trips home to recover from pneumonia or bugs I picked up at school and I couldn't fight off like the 'average', 'normal' and 'healthy' kids who took for granted their God-given immune systems and happily washed the weekend down with shots... simply exercising a rite of passage. I didn't have the ability to exercise the freedoms of casual abandon because I was fighting to keep my grasp on as close to normal of a college experience as possible. Denny knew if I was out of class it was not because I was recovering from a hangover. He knew my story. He knew I would always get my work done...or die trying.

The woman for whom this Woman of Promise award is named, Dr. Mary Hamilton, also held a number of my fondest memories at St. Bonaventure. During my senior year Dr. Hamilton was my senior capstone advisor- in the dark ages when the 'hottest technology' for storing large filed documents existed on giant drives you could barely fit in your backpack - and that last semester of school I lost my entire senior capstone project. I had already completed most of it when the drive malfunctioned and warped the entire document, rendering it utterly useless.

My project was a 40 page retrospective yearbook on the history of the Francis E. Kelley Oxford program of which I had just returned from as a student that previous summer. I had all but one of my articles in hard copy so that was easily retyped but the design work and the hours in the lab and designing and finagling were gone. Scanned pictures- gone. Hours of work and design - lost. 

Dr Hamilton was my advisor for this project and she encouraged me as I rebuilt the document. Doing everything but sleeping in the yearbook office using its high-end software program- the one I could not afford to purchase for my dorm computer. I began to wish I had taken the research paper route instead. That project went through numerous and careful revisions, but when I put that finished yearbook on Dr. Hamilton's desk- she smiled from ear to ear. 

These are the people you never forget. These were my rainbows in the clouds. 

When you remember the people in your life who made you better, you remember not their words, but how they made you feel. And those feelings are transformative. 
They can help you wade through the thick waters of disappointment or disillusionment when someone knocks you down. Perhaps like many of us, I've had my fair share of those who have played this other unfortunate role in my life. Yet, coming back to campus and having a few of these special heroes embrace me was like a warm blanket wrapped tightly around my shoulders.

I had the good fortune to help present the Dr. Mary Hamilton Woman of Promise award (alongside Dr. Hamilton) to a very special young woman named Makeda Loney. Remember that name because she is going to do incredible things- I know this.

As she climbed the stairs to the stage I couldn't help but hug her before even going in for a handshake. I had read her story and in between the lines of her biography I sorted out the story of someone who much like me had challenges to overcome when she first stepped on campus. No doubt, she fought through them in a way that led her to be wholly worthy of being honored yesterday. 

"Are you nervous," I asked. 
"YES", Makeda answered back without hesitation.

As she visibly fought through the nerves of preparing her acceptance speech my whole life came full-circle with the sound of Patrick's voice. My fiance who had been quietly smiling and playing the supportive role all day interjected with a smile.

"Makeda, can I give you some advice?," he said
"Yes," Makeda answered.
"When you are talking up there...when you are speaking and you see our faces...you just have to know that everyone in that audience is on your side."

This journalism major is also steps away from being a theater minor. Patrick, an actor was just the person to give these words of advice. 

I smiled with pride. Full circle indeed. Here was my husband to be, the man who had successfully conquered his own childhood fears of stage fright, giving this special young lady some words of encouragement. 

This is why life is good. This is why you should never give up. We all have moments where we doubt ourselves and our abilities...we all have moments where someone else judges us unfairly and steals our joy. Yet, we have to keep on keepin' on and looking for those rainbows in the clouds along the way. When we find them- we have to work extra hard to make those 'I-believe-in-you' voices louder louder than those voices that discouraged us.

Yet, when we are able to take that power and give it back to someone else...then we have become aware of the fullness of our humanity. It is the power of life. It is the power of love. It is the power of promise.

With Makeda, truly a woman of promise

I told Makeda in my speech that there are 3 things to keep in mind about being a woman of promise. Perspective, perseverance and purpose. 

Perspective- to see where she started, and where she is now.

Perseverance- to see how she can keep going in tough times.

Purpose- to know who she is fully and know what drives her.

Those are things we can all remember when we believe in our own promise. Life will never ever be easy - but it sure will be worth it.

Zen with sneakers

In spring 2010

I have a confession. Without realizing it over the last year I've slipped into somewhat of a fitness slump.

By the time Patrick came home a month ago and nudged me to accompany him on visits to the gym, I realized exercise was the thing I had been chopping off my list consistently when there was any time crunch. Fatigue has also played a role in this...

With the way my life is set up now, I didn't really even realize how slowly and yet dramatically this pulling away from exercise has impacted me.

There are lots of ways to find spirituality. I'm not speaking about God necessarily. I don't do any of my praying during workouts. I'm speaking about a sense of calm and serenity- and an ease that everything is going to be okay. Even if it isn't, everything will be okay. A sense that somehow the things you have no control over don't have a hold on you and instead you can hold on them at bay. A sense that you can  channel any negative messages or fears and turn them around.

Everyone needs a place to release and re-invite that message that 'everything will be okay'. That place for me over the last month has oddly enough been the gym.

For the last few weeks when I'm sweating it out on the eliptical, it's the one place I can't be reached on the phone or feel I need to attend to something else. I zone out completely and let the pure rush of solitude (in a crowded gym) wash over me. Here I have a very singular purpose and here there are
no interruptions.

The spin class with the amazing Marti has become my zen. And Patrick's too. Even though we're pedaling beside each other in class - the experience is totally our own. Yesterday I entered the class carrying many worries in with me, but by the end of class they were unburdened and I felt that comforting hum that is peace.

In no way am I advocating abandoning religion for a gym membership.  I just think it's time I regain a little sweat equity in the work that is just on me.

Isn't she lovely?

Mary's little lamb

Just 48 hours ago I got a tearful call from my mom. "Mary's water broke."  Ready or not, baby Rachel was very likely coming and far too early for all of our liking. The fear in that call jarred me out of a sound sleep and the only thing I could do after I hung up was pray and struggle into a pair of jeans.

When your only sister faces a health crisis your heart beats faster as your brain treads on a momentary stabbing pain of 'if' ...and it scares you to death. Then you rationalize and try to just move...and do something.

 Both Mary and I have intimately known this fear before. Mine as she underwent a harrowing spinal surgery, hers, likely through various portions of my two bouts with cancer.

But this time around (and all along these three months prior) I've been terrified about the health and safety of two precious lives...my sister and her unborn baby Rachel.

Just after Thanksgiving we learned that the baby Mary was carrying (who we had just learned was a girl) was in trouble.
Fluid was accumulating inside of her, threatening the development of her organs. We feared together as Mary and Karl learned the odds were not great. The terror they felt as they were given an option to terminate her pregnancy woke my family into a reality that once again, life can be as cruel as it is beautiful.

But somehow my remarkable sister and brother in law were given a gift- medical hope for an experimental inter-utero intervention.  Faced with little other options they chose this sliver of hope...and they chose to try.

I watched my sister press on with courage and incredible love for this little girl who she and Karl wanted very much. Even though there was fear in her heart she kept her love and anticipation and her belief that this little life would make it. 

We took Mary and Karl's lead and held the fear at bay and celebrated the hope they had been given that this little girl might have a shot. Many people didn't even know that the baby they were expecting had been dealt such a tough prognosis. That is because we kept up the celebration. We were waiting for a new life...just like any other family.

And Tuesday at lunchtime my brother in law texted me a picture of a cluster of nursing staff lifting a tiny little form into an incubator. My eyes filled with tears. The next text was "she is here and she is breathing on her own".

Rachel Valerie Sieburg

I am an aunt! Rachel is here and all of us love her to pieces. 
At just two pounds and 14 ounces, she might seem fragile and helpless, but I think we all know better. This little girl who might not have been here without faith and hope is already showing us she is ready to take on life with a feisty spirit.

I looked at her last night in her incubator and recognized the visible etching of my sister's face. I see in Rachel the same rosy full lips from Mary's baby pictures. Karl, he's in there too, no question, but I am guided back to a time my childhood memory can't conjure. It's a time I am told of through family stories...a time when a little skipping girl (not even three) ran into a hospital room and presented a tiny rattle to her baby sister. That first gift would be one of many but that little girl never knew how much her baby sister would mean to her then. And certainly that little girl never had visions of another baby, three decades later that would mean just as much. A baby we were so aching to meet...hoping that she could find a way.

According to most translations of the meaning of the name Rachel, it means sheep. I thank God for watching over his little sheep...so we could have her here with us. But to me, her Aunt Leah, this tiny little miracle is a sweet little lamb.

Your mother was a 'amster

In DC with Patrick Bruce Jordan (third from left) and Tom Wahl (far right)

I'm engaged to King Arthur. That's right...some day, some day I shall be Queen! 

No, that's not quite right. But Patrick flew down to Sarasota this week to start rehearsals for Spamalot. It's directed by the incomparable Bruce Jordan who does comedy, farce and hilarity with crowd-pleasing precision.

I am so incredibly proud of Patrick and can't wait to see him in it when I go down there at Thanksgiving time.

Since Patrick and I have been together I've discovered all the heart and soul that goes into in his craft and it's made me appreciate how much dedication goes into the entire spectrum of every actor's life. And if ever there was a production that was tailor-made for my guy, I have to say this one is the pick. I can't wait to see him prance around the stage in full Monty Python glory. 

For every practical and understandable reason, I miss my fiance. Yet I delight each day with Patrick's new stories of his adventures fine tuning the role of King Arthur. Monty Python is simply whimsical non-sensical fun. Though he's more of the straight man in a cast of sillies...the whole world of Spamalot is the ultimate playground for an actor whose comedic chops just totally send me into snickering fits. You must remember, before we ever met in person I laughed my butt off watching him fall and laugh like a hyena on stage.

Last night I was treated to a little behind-the-scenes fun as we chatted on the phone. "Do you feel like reading my lines with me," he asked. My mouth dropped open.

Patrick has never before had me rehearse lines with him and he's always insisted that it was something he's just does better at solo.

But last night I read the role of the 'French Taunter'.

There's nothing quite as silly as reading back and forth to your fiance calling him an 'English bed wetter' and to go 'boil his bottom' under the guise of a script, of course.

Patrick has always laughed at my faux accents. None of them are of the accuracy of a classically trained linguist. But with silly Monthy Python I could almost be passable...maybe. 

I'm gonna try my French taunter out around town perhaps. Or maybe not. I'll leave that to the professionals.

So proud of my guy. If you happen to be in or around Florida the show opens up in 3 weeks. GO SEE it. Yet, I wouldn't wait to buy tickets. According to Patrick the house is selling out fast. 

She lit the way in uncertainty

The flow of tears yesterday was both a celebration and a mourning. Yesterday was the ninth anniversary of my first cancer diagnosis. It's a day I'll never forget.

In the nine years since I was first diagnosed I've felt tears fall for many reasons...but yesterday was a profound mix of gratitude and guilt. Gratitude for so many things...but a sense of profound sadness triggered by someone else's journey's end.

Yesterday I found out that a woman who was a tremendous resource to me during my darkest hours passed away just two weeks ago...from cancer. I didn't even get to say goodbye.

Coleen Jones was a classy woman. Her voice was instant comfort from the very first time her it came on the other end of the line in my call to the Western NY chapter of the Leukemia Lymphoma Society. In 2006 when my whole world felt uprooted and shaken, Coleen provided comfort and hope. She helped guide me through several application processes and was always charming and sweet. I first met her at a support group that I felt totally out of place at - as the only twenty something in a room full of older ladies, golf buddies and retirees. I returned only when I knew Coleen would be there moderating.

Coleen became in many ways so much more than a service provider in my life. Her sincere interest in my life (the one beyond my disease) and her casual banter with that charming chuckle made calls with Coleen a delight.

 In 2007 she nominated me as the Spokesperson for the Rochester Light the Night Walk. She gave me a huge hug when I walked off the stage that night. Our connections didn't end there...when we worked together on a cancer conference for young adults in Rochester in 2010. She told me how much she admired what I was doing in Rochester and never failed to make me feel truly special. I'm grateful that I always told her how much I appreciated her in return. I always reminded her how much of a difference she made to me during those days of complete chaos.

Remembering my cancerversary yesterday...I thought of her. I meant to find a way to call her yesterday- to schedule that lunch we'd meant to set up. Instead I found her obituary.

A true hero to so many cancer patients, Coleen herself became a patient when she was diagnosed with breast cancer. Though she made it through...her disease returned. I wish I could say that I learned of her recurrence from that obituary, but I didn't. I learned of it after I called her work number a year ago, only to find she had resigned and soon after learned the reason why.

I had her cell number and texted her a message of support. We exchanged a few lines and I made a plan to set up a lunch the next time I was near Buffalo. But time got away. It never seemed to be the right time. Perhaps it's too short notice for her, I thought. Yesterday I felt a lump of regret in my throat for all that procrastinating.

Coleen was special to so many. I can be sure that I'm not the only patient who felt the golden touch of her care and kindness. In the past nine years I have survived two different cancers. That was hard.

Saying goodbye to such wonderful people I've met on this journey is harder.

There are challenging bits of knowledge in the bright unfiltered light of survivorship. It's where the recognition of life's fragility meets our capacity to acknowledge it head on. It's a shattered faith in happy endings. Some run from it. It's easy to see why many desperately try to avoid the reminders of this finite and bitter reality. Damn right it's hard.

Yet people like Coleen should not be forgotten. And so if remembering her means knowing a little bit of life's unfairness... I chose to remember. Thank you Coleen.

Someone to watch over me

I've been up all night hacking with a cough that won't let me sleep solidly through the night. And it is these times, the early morning hours when nothing can settle me back in that I am forced into the reminder of the toughest early morning hours throughout my life. 

I've been having a lot of nightmares this week because of this. 

I have to settle back and remind myself that life has changed. Sick Leah is no more. But my subconscious is playing in the background while my body is fighting this really super un-fun bug.  

When you've spent as much time as I have in life not having a 'well body' it takes some doing to just know fully that all will be alright and somehow the immune system will do it's job. 

Others in healthy bodies just don't take the time to contemplate or easily realize what that's like. When I meet young people struggling with the after affects of cancer- not the disease itself- but the constant visits to the doctor to fix another part that's wrong... they have shared with me the things that bug them.

The comments and the 'sound advice' that others lob on them are exactly the same things others have said to me for years. 

"Can't you just find another doctor?"

"But aren't you done with all this?"

"You really should try doing more positive thinking..."

I knew Patrick was the man for me the first weekend I visited him in Queens when I got sick. All the sudden dizzy nauseous. And not a drink on me. I was terrified to be sick (any kind of sick) in front of someone I was dating. I had too many occasions of episodic dating that ended badly because of this. Pre-cancer and pre-advocate days, I had learned in some ways to hide my ill self from any guy I dated.

It was miraculous to me that night...Patrick seemed unfazed. He simply cuddled beside me on the couch and sat with me - no judgement, no prying laundry list of questions. He just held my hand. I had never, in all my life, known this kind of feeling. 

A few months after this I learned what it was to play the other side of that role. While in Rochester readying for a reading he did at Geva he developed a horrible virus that sent him to urgent care. We spent our long weekend together on the couch...and I nursed him with herbs and potions I'd dabbled with through the years from the 'help-me-I'm sick' section of Lori's Natural Foods. He made it through his reading and collapsed back on the couch with me afterwards.

I realized for the first time the reciprocity of caregiving...and the importance of a lack of judgement. To just be there...and to be present. 

Last night when I was just feeling awful it was his voice on the other end of the line soothing me. Wishing he were there in person but doing everything he could to make me smile. Because of his work we spend a lot of time apart, but he is still my guardian and caregiver from afar. He sings anything I request. Lullabyes seem cheesy I know but they have been a cornerstone in a long distance relationship that works.

I never realized how good it would feel to be 'looked after'. 

Someone to watch over me.

And guess what?

Exactly a year from today I'm going to marry this guy.