The view from here

I do not know one more thing in life more visually awe-inspiring than being somewhere high and looking down at the earth you commonly tread. I'm no expert at getting there by any means. And it's a funny thing for someone like me to appreciate because of my lifelong dance with a fear of heights. I used to say "I'm not afraid of the height, just the falling from it."

Our TLC-ers look down at the glory of nature

This weekend getting up that supposedly 'easy climb' to the top of Peaked Mountain was no walk in the park. Our six TLC teens had to wrestle with more than a few roadblocks (what road?) as we meandered our way up the two mile terrain (Rick, our fearless guide's 'rough estimate was a blessing') and encounter a few snags along the way. Yet, of all the breathless moments and obstacles of the trek, we were reminded that obstacles come in so many other forms. Our obstacles, our fears - those that we consider so paralyzing may seem pale in comparison for another enduring something far more difficult. 
This is perspective.

Joining us on the journey up Peaked Mountain was Scott, outreach coordinator for Double H Ranch (a Paul Newman camp) and his girlfriend Kati. Scott was diagnosed with cancer as a baby and lost his leg before he ever learned to walk on two. Yet, here he was climbing a mountain with us. As much as a person with two legs can understand, I knew the difficulty added for Scott to an already challenging pursuit. His prosthetic with all of its high-tech capability can not grip, steady, push or turn as easily as a real leg.

Adam, Kati, Scott and Rick

Despite many difficulties, several uncomfortable maneuvers and a frustrating fall Scott made it up that mountain with us. Kati was his right hand woman and the two worked like a team.

Scott shared something with us that has stuck with me. When he is mistaken for a veteran or a wounded warrior he is thanked for his service and praised for his courage. However, when he inevitably corrects the mistaken praiser to the fact he lost his leg to cancer he is often greeted with uncomfortable silence. "Oh" is all they can often say. It's sad that cancer can still be to some such a taboo.

We still live in a world that is for the most part populated by people who do not have to fully test their own adversity. This is a good thing. But it is not a good thing if kindness and appreciation fail to accompany those lacking in the hard knocks knowledge. Those who do not walk the path should at least regard the journey of another they encounter with respect. 

 'Be kind; for everyone you meet is fighting a hard battle.'

What is it that has brought such wonderful people to my life? Is it their adversity alone? I don't think so. It is merely the adversity that sharpens the character that already existed. And then the transformation that comes from working through the adversity...that brings all of their character into a brilliant focus.

Losing hair. Losing a year of high school. Losing a leg. Losing a child.

What is it that makes the most difficult things in life tools and motivators?
Perhaps it's because the other option is to slide back-  to become less than your full self? That is a risk those I know are unwilling to take. 

Saying 'okay, you win cancer' is just a phrase we don't say. Those words will shut out life. And even a minute of wallowing in the ugliness shuts out a minute of the beauty of life. And it is so beautiful...and wonderful. 

And fear...well, yes that's just a part of the whole experience. You don't survive cancer or look upon a loved one enduring it without being afraid. I don't care who you are. But fear is something we must live with and manage to keep on going. 

So, did I mention that after we got to the top of that mountain there was just one more thing to do before descending? A 60 foot rappelling exercise- optional. Five of our six teens chose to do it.

What are our fears compared to what we can become if we tread a little outside of them? What become of our reasons for turning away when we view the challenges and victories of another who has waged them?

And what beauty lies in the discovery of all of it? Sharing, learning and growing stronger from our fears.

You learn early on that the world is imperfect. But some of us learn earlier than others...and perhaps some have to grow their courage by necessity in order to climb above life's imperfection. Climb above to find something else. Beauty.

I have not had the joy of being a parent so perhaps I have no right to own the particular pride I have for these young people. But I am so very proud of them. I am so very lucky to do what I do and I am lucky to be one small part of their journey. 

And I do all of this alongside a leader who inspires me with her courage. She did something I could not do this day in particular. Go Lauren!

The message in all this? Life really is beautiful. It's not always a pretty view but when it is...you have to stop and savor it. I pinch myself that I get to share this with all of you.

Reunited with my backpack

I found it this morning- deep down at the bottom of my closet. Crumpled. Forgotten. The orange and grey hikers backpack I had scavenged for and finally purchased from an outdoor thrift shop in Boulder! 

This backpack had been my constant companion for that summer in Colorado.

Tomorrow morning we take our teens to the Adirondacks for a trip of a lifetime and I am remembering the last time I wore that favorite bargain backpack. It's hard to believe that it's been two years since I was in so much fresh air.

When I took that road trip out to Colorado my mom was convinced I would become some headline on the 11 o'clock news- especially she learned that I was hiking a lot of places by myself. Public, marked hiking trails mom...at full daylight with a safety whistle. Gosh, two years later I still have to clarify that on my blog.

Anyway, as I pack for this trip and fill up the orange REI I am getting wistful. I am also getting butterflies. Can you believe it? So many things fall out of practice when you get settled into a different track in life...but those butterflies are really about excitement.
I'm excited to get back to fresh air and put miles between myself and the familiar...even if just for two days. I'm even more excited for all of this to happen to our teens- the wonder, the fear, the release of that fear, the enjoyment, the exhilaration and then...even the sadness at going home - all of it. 

Tomorrow, we do this! We begin TLC's greatest adventure headed up by adventure expert Rick French. A Peak Experience, if you will. We load 'em up, we head 'em out...and live our best lives...now.

Thank you matters

Ever really stop and think about who you have said thank you today? The pressures of our modern society can totally rob of of us multiple opportunities to make someone feel special. Think about how many times you are in and out of stores each day? Think about how many times you actually say thank you for the service you receive? Do you take the time before you run out of the store/restaurant/government facility?

Not a standard vacant muttering because it's just what you say. But a thank you and a conscious and genuine one?

Think about the person who waved you ahead at a crossing even though it was there turn to go.DO you smile? Do you wave?

I'm not saying overdo it. Don't become their best friend, but give a person the time to feel appreciated.Often negative exchanges in our world happen from inpatience. Consider traffic. I need not say more.

If you have a smart phone put it down when you're in line at the grocery store and look the cashier in the eye.
We aren't paying attention to the world around us as a whole. For the most part modern society works pretty well. Yet with a never-ending trail of people receiving demands and people trying to fill them...there are so many interactions. Many of them are halting, and many of them are filled with only lists, only demands and no thank yous. 

What is the difference when people have critical awareness about others? What if the constant monologue going on inside your head took a break long enough to look at the other person and give them something positve- even if you feel the pull of your own frustrations. 

A few months ago I was reading an excerpt from a graduation speech by David Foster Wallace. He talked about the imprisonment we are in with daily life and routines. It was called 'This is Water'. It went around like wild-fire on Youtube when it was condensed by a fan and made into a visually appealing video. It has since been yanked. But the point was that we are unconsciously creating a status quo of 'me' by listening only to our own voice inside our head. 

Stopping to consider the other person in every daily exchange we have is hard. It goes against the grain of what's going on around us.  Positive exchanges are applauded in our society but not reinforced by daily routines. Most people think they do enough stopping, but they don't. They go back to their default setting which continues the 'dialogue of me' which consists of what do I need. But what if we asked ourselves mentally what another person needs?

Selfishness is speaking louder than selflessness in our society. I have been guilty of being inpatient because of the stress I carry with me. I have been guilty of tuning out and sliding back into the own hum of my mental dialogue. But the minute I have slowed down, it's brought me back to center. All of us need constant reminders. Sometimes the only person to remind us is ourselves...and that involves changing the way we think and operate. Changing our 'default setting'.

The choice of how you think is up to you. Wallace described conscious and 'in the present' exchanges as being life altering. What if we looked at thank you as more than just platitude but something that had actual human value? That it might just produce positive change?

Upon receiving this link to a Ted Talk link...I realized it's saying essentially saying in a simpler way than Wallace. It's giving us an action piece that may seem so basic. But it's simplicity is it's beauty.

 Be present for another person and here is why thank you matters.

http://www.ted.com/talks/laura_trice_suggests_we_all_say_thank_you.html

Born-again DIY-er

SO help me God I went into a craft store for one thing- seriously one thing.

I walked out with a basket full of items (all wedding related) and had to do a deep breathing exercise.

I'm going to shamelessly steal my fiance's catch phrase of the month and say...

AND SO it begins!

Tissue paper in my wedding palette! Find!!!

Those who know merecently may see the hurried and harried Leah who is always trying to do too much. Convenience food, short-cut solutions and pre-fab gifts and cards are best suited to my lifestyle these days. But those who have known me for a while have seen another side all-together. A side I bet you never would have guessed. I admit it.

I am a closet Martha Stewart. 

Yes, that's right I am. When I was sick as a teenager and later on as a young adult all I had was time and a lot of stuff. One thing people give you when you are sick- is "stuff". I found ways to recycle little ribbons on gifts I got into little things I later gave as my own gifts.

Being sick also equals lack of money...which led to this necessity for thrifty creativity.

So go figure...here I am in A.C. Moore re-exploring my former creative self.

I resisted the urge last night on the phone to tell Patrick about this trip to the craft store.

I am marrying a very creative man. He's an actor and truly an artist. But definitely prefers the arts to the crafts.

I learned this about him when we were wandering through Ithaca after a nice dinner at Moosewood. I innocently led him into a craft fair in Ithaca and I heard his breath change. The man literally develops hives in Michael's. No joke. I swear he is allergic to craft stores.

His deep seeded fear is quietly respected. It's an understood...that this is where 'together' doesn't quite work. I think we have an understanding...if I create the object of beauty he doesn't have to know where it came from, or the process...or picture me in his head with a glue gun.

But as I think about ways to save a few pennies -- there is this little piece of me deep inside who has re-emerged. As we roll into all the planning for our wedding a year from now her voice gets louder with every 50 percent off coupon. I'm itching to get out that paper cutter and the mod podge...and SO it begins.

------

Just so there is no mistake made from the account above-- I am not - I swear not taking this wedding planning thing too seriously. I have a healthy sense of humor about the nuttiness that comes over some women as they approach this point in life. I will admit I am guilty of some of the stereotypes and silly little bits that are part and parcel of the process.

It happens in different ways - to different extremes. 

As of now nothing has hit me yet at a point where wedding craft rehabilitation is needed.

..this video sums up the hilarity of that whole 'bride thing'. Enjoy & laugh your butt off!

A tribute to my father in law to be

It's hard to express the range of emotions that I've experienced in the past two weeks. Two weeks ago my fiance Patrick lost his father. The loss of a parent is a grief that truly can't be measured with an adequate understanding, I suppose, unless you have walked the path. Yet, in an odd way I am both on the outside and the inside of the loss. I only met my father in law to be Neil Noonan once. On a road trip back to his hometown Patrick and I met Neil and his wife Judie for our favorite meal in a restaurant outside Milwaukee. Over pancakes and coffee I met the man who raised the man I love. I never thought it would be both the first and last time I would meet him.

When we became engaged two months ago Patrick's father was quite excited, but as I later learned he not only gave this union his blessing...he shared it with many of his friends. As the stream of friends and family walked through the church where he was laid to rest many came up to me. Sometimes before Patrick had had a chance to introduce me some of their eyes would light up with recognition from just that one picture we had taken. The one Neil insisted we take at the restaurant with he, Judie, Patrick and I. Thank God we have that picture. Several friends wasted no time in putting their hands in mine- as if they knew me right away. " Well, you must be Leah."

They told me how much Neil talked about his son's wife to be. Holy cow! That's me!

One of them told me his eyes twinkled when he spoke of me. As I heard these recollections I couldn't help it...my eyes filled with tears. I began to see how deep the bond would have been in our coming years. But that bond has not broken- not really.

For me, there could be no greater honor than to have held a place in the heart of a man who I would never officially get to call my father in law. I did not have the pleasure of knowing him very long before his time on earth ended.  Yet, there were Christmas gifts exchanged, cards, phone calls and I was privy to a few of his trademark playful jokes. 

Patrick and I looked forward to having his presence at our wedding. 

 Though he will not be there with us on that day- I feel somehow that I can still call him my father in law and carry him with us...because the absence of his earthly presence is mere technicality. I loved Neil Noonan, not only for who he was to Patrick, but for his heart and his open welcome of me into his heart. There will never be a picture of us together on our wedding day (with me in the white wedding dress). Yet at our wedding a year from now...I know he'll somehow find a way to be there.

'Till we meet again.

Below is a video I made for all who loved Neil Noonan. It features a song performed at his service this past Monday. The song is the beautiful trio of voices of his children singing his favorite song- about a racehorse whose legend carried throughout Ireland.
 Hope it provides some comfort.

http://www.youtube.com/watch?v=fMP7BRaMcQQ


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Dancin' In The Rain

Yesterday morning I was greeted by a most incredible poem, the status message of a young woman I've gotten to know in the hospital. She's 16 years old and as is often the case of the young people I get to meet - she's wise beyond her years.

I won't share her poem on here. She's given me permission to post it on the Teens Living with Cancer Facebook page . But its gist is that so many people bemoan rain falling on them and dash away from it with angst. There's been a lot of rain in 'monsoon Rochester' these past few weeks. One might understand the frustration.

This young woman chose to take the rain differently. 
Her answer: let the rain fall on her and enjoy the feeling of simply being alive. She knows now at 16 that time is not assured. She knows that time is a gift, no matter the length. Experiences must be taken as they are - even if we desire something different. That's because sometimes we just are not given a choice. SO it is that this young woman has chosen to celebrate...

And how did she come to realize this?

Well, I don't have the answer to that question. Because despite cliches you might hear about cancer survivors- not everyone is magically given inner strength. Young people face especially steep obstacles as they weave their way through the chaos that is a life already so yet undefined. Sometimes young cancer survivors must traverse a rocky trail without the soft cushion of comforts on that journey. Things like gratitude, hope, laughter, simple joy...or even the support of friendship on an entirely deep level. 

That's why I love doing what we do at TLC. Whether the comforts are there for the traveler or not- they are given and/or reinforced in our special place. Being able to join forces in that shared deep understanding is key to what makes friendships cement together in our 'little program that could'.

This August we are climbing a mountain. That's right. Eight teens are going to climb a mountain with us in the Adirondacks and maybe feel the rain on their skin without the shelter of four walls. Feel and know that they are capable of reaching their dreams.
For you Colorado friends this by comparison, may be a hill. But their challenge will be very real on this trip.

We've been preparing for that trek. Last week we met at Mendon Ponds Park with our wilderness zen master, Rick French. We were there to learn the basics, but mainly to just feel what it's like to take ourselves out of the clutter of our busy and overstimulated lives. And yes, the rain fell on us as we paddled to shore. And it was wonderful.

I know I share these things often with you. The lessons our teens continually remind me of reinforce why I love what I do. Because they share with me...I am blessed.

Their lessonsdon't really shrink into a Hallmark card. The quote at the top of this blog is the best I've come up with, but it pales in comparison to that 16-year-old's facebook status I mentioned.

The depth of what I learn from these young people I am privileged to meet through this work feeds me and my life. It's what drives both Lauren and I forward... to help all of them get to this 'dancing in the rain' level of resilience. It's deep stuff most times.

More than five years ago I wrote Lauren Spiker an email. Lauren inspired me, but it was her daughter Melissa's story that brought me a piercing and profound understanding of what remains to be done for teen cancer survivors. I came aboard as a volunteer, moved toward part time worker...and now the Teens Living with Cancer program is officially my job. 

For this work, having already trekked my own difficulties as a young adult I already had an edge. Knowing the landscape of forgotten cancer survivors I had an understanding. However, as a 26 year old and then a 28 year old during each respective diagnosis, I was lucky to have been swept into the momentum and strength of a movement for young adults - it was happening everywhere, all over the web and throughout conferences happening all over the nation. 

But five years ago I was educated. It was the A in AYA (Adolescents and Young Adults) that was absent. There were voices speaking out for the twenty and thirty somethings - feeling justifiably out of place. In the United States...we had Lauren Spiker and her daughter' legacy. 

Teens tred water at the deeper end of that AYA pool the 15-39 pool. They were forgotten by even the movement that spurred such national attention. Until one mother, who I now am lucky enough to work along side said "Hey, what about them?"

Not every soul touched by cancer is lucky enough to dance in the rain. It's hard to get to enjoying life in throes of this cellular and singular experience called cancer. Yet, tools we provide do make a difference. How do we keep doing what we're doing?
The answer is we need you.

I hope you'll continue to remember the other group some have forgotten. So the A in AYA can also dance in the rain.

And I want to announce to those who run (or walk)
Sunday October 13th you will have a chance to help that forgotten group with TLC's first ever 5k!!!!

Will you please help me get the word out...so we can continue to give teens TLC.
Join me 10-13-13 a run for our teens!

To Catch a Thief

Amidst wedding planning that involves the question "how the heck do we afford this?" something awful happened. 

On Monday night while I flipped through wedding magazines with my sister someone went to an ATM and withdrew $400 from my savings account. 

What's more shocking isn't that they stole $400 from me. It's that they did it with a bank debit card they stole before it ever reached my mailbox.

I have been struggling with the idea that someone stole from me. "I can't believe this happened to me!" A typical initial why me scenario. But my eyes have been opened.

According to the Bureau of Justice:
In 2010, 7.0% of households in the United States, or about 8.6 million households, had at least one member age 12 or older who experienced one or more types of identity theft victimization.

Among households in which at least one member experienced one or more types of identity theft, 64.1% experienced the misuse or attempted misuse of an existing credit card account in 2010.

Alarming, huh?

Anyway, long story short...I found out about this within hours by mere accident. I happened to call my credit union Tuesday morning because my newly issued card never arrived. I called just a mere 10 hours after this slimeball went to a 7-11 on Titus Ave in Rochester-- probably bought a slurpy and lottery tickets...and walked casually out with my money. Had I not found it that morning they may have taken me for all I was worth.
Bye bye life savings. Bye bye funds for a wedding. 

What still remains is how this happens. How someone stole my card...and also had access to the pin numbers in separately mailed unmarked envelopes. In the mail or before it even got to the mail truck?

I've done all the right things. 

• The credit union immediately stopped the card in their possesion. 
• I filed a police report. 
• I filled out an affidavit with my credit union and had it notarized. 
• I contacted my post office in person to report the possible theft.
• I've made an official report with the postal inspector
• I'm watching my account like a hawk
• My reissued card will be sent to the bank for pick-up (versus my house) 

I want this person caught, but I have very little expectation this will happen. Right now the police say it's not their jurisdiction if it happened in the mail. The bank's fraud unit is supposedly on it. 

The bureaucracy is tough to wade through as a victim. In the last 48 hours I've spent hours on the phone and in person doing all the right things...but knowing that as we sat on the doorstep of a federal holiday - hours will be lost. 

The other steps I plan to take must wait until after the 4th of July. My paperwork will sit on a desk and another thief may get away with this. 

I hope that's not the case but I have to be realistic.

I've had 2 sleepless nights- waking up with a start from a nightmare. I can't imagine how I'll feel safe again with my money or my identity. I check my bank account hourly. I wince at the thought of what could happen next. 

My advice to all my friends and blog followers reading this- keep your eyes open and if this happens to you, act fast. It's a really crazy world out there.