21st GTBAD Letter

 

20th GTBAD Letter

October 22, 2017

Twenty years. Twenty years is a life time. It encompasses birth and those first few years of wonder in learning the world around you. It encompasses school and graduations. It’s birthdays, learning to drive, drinking, voting for the first time, and all things that mark one entering adulthood. It’s first kisses and first loves. It’s seeing friends and family grow older alongside of you with their own celebrations like weddings and births. It’s joy and excitement for opportunities for the future. It’s life with all of its paradoxes and lightness and darkness. It’s overcoming and SURVIVING. 

And we all survive one thing or another!  But the beauty of life, the miracle of life, is that we as a species not only survive, we can flourish. We can love better and live life more in the moment because of our struggles. We are capable of such great things by adapting and overcoming our personal challenges. We also need to understand that the process of surviving isn't always pretty or without setbacks. It can be a terribly dark and lonely process where the beauty of life is hard to find. A place where depression and anxiety rules and where we have to rely on help to get us through. And why am I writing this to you in a letter celebrating life? Because after twenty years of surviving, I am continually reminded of all of this. That life, all life, is precious gift, and if we can look close enough we can realize how blessed we are.

For me, the year started off with an amazing and life changing surprise. I received a work vehicle from my boss and brother Chris. It was a bonus and job perk for the work done in the past three years. I did not have a personal car for 4 years, and my mom and I were sharing a vehicle which was pretty dang stressful for all involved. I can’t tell you how amazing it is to finally be independent once again.

Then in March, a huge announcement was made about One Cure, my personal cause. Through the tireless and selflessness of others, One Cure has become a national and international initiative. One Cure and the Tony Stewart Foundation announced a partnership that brought the One Cure car driven by the amazing and talented Jay Howard to the 101st Indianapolis 500, the largest racing event in the world. Due to the amazing support of others, my dad and I were able to attend and to see the wonderful efforts of so many people who believe in curing cancer for all species. We literally spent the morning of the race in the garage, on pit row, and then on the track with the One Cure car. Everywhere we went, all of the people were so welcoming, kind, and engaged in learning more about One Cure. The photo of me on the front wings of the car along with other cancer fighters, both human and animal, was also pretty cool, and I feel like I can say I’ve been in the Indy 500 now! Truly though, the most important part is that we were able to bring more awareness to people about One Cure and translational medicine. 

Besides the Indycar side of racing, One Cure was given sponsorship status in NASCAR through a very generous donation by one of the most amazing individuals. Danica Patrick, the No. 10 car for Stewart-Haas Racing, has had the One Cure logo on her car twice this season, and then on August 19th at the Bristol, TN race, CSU One Cure car was the main sponsor of her car. At the last moment, and due to unfortunate circumstances of one of the planned attendees, I attended the race in their place. It was such an amazing trip getting to meet Danica and experiencing every aspect of NASCAR including watching the race from the pit box behind the crew chief! To put it mildly, I am now a fan of NASCAR. I’ve been watching NASCAR every weekend since February and I can name most of the drivers, how they are doing, their sponsors, etc. I quasi-jokingly told my parents when I came home from Bristol that my new life goal is to be a race car owner. Hey, it’s good to have life goals!

 

To further round out the blessings of the year, in the last month, I was notified that I was receiving hearing aids from an amazing organization called HearStrong through the generosity of Widex, a hearing aid company. One of the people attending the Indy 500 in the One Cure contingent, Catherine, works for a company that helps independent audiology clinics on the business side, and when she found out I’d been having problems with my aids as well as how old they are, she started working without my knowledge to get me new ones. In the week since, I’ve had the aids, I have noticed a drastic improvement. The best part is that my new aids are Bluetooth enabled, so I can use them to make calls and stream music directly to my hearing aids. It’s simply amazing. As any person with a disability, adapting and overcoming that disability can be tiring and stressful. At work, I have always struggled with anxiety in hearing the people I interact with and especially when I use the phone. Now, I no longer worry about that because I can truly hear the people on the other end!

But like life, not everything is rosy all the time. We’ve had quite a few health issues in the family. My dog Gertie became really sick last year, and we finally took her up to CSU in February to get checked out. Turns out she has Cushing’s disease which means her body overproduces cortisol, the stress hormone. It’s pretty ironic because I have the opposite problem; my body no longer produces cortisol naturally due to all the steroids I am on. She is now back to her normal puppy and loving self thanks to the amazing vets at the CSU Animal Hospital.

In addition to Gertie’s health woes, my grandfather has been very ill on and off throughout the year with multiple hospitalizations and illnesses. It’s been a struggle for our family to adjust to my grandfather finally showing his age especially since he has been so vibrant up until now.

 

We also found out in the last two months that my mom needs a corneal transplant. With knowing some about transplants and all of the side effects and limitations that they bring, we were fairly scared about moving forward with this. After consulting with her surgeon, our fears were allayed. She won’t have to take any systematic medications, which have horrible side effects, and because it’s not a critical organ, they can wait for good corneas to be donated. The only bad part is that she’ll be blind in one eye for a year, but after that she should have much better vision without the hassle she lives with now.

For me personally, this year has also been really rough alongside all the awesome things occurring. Work has been pretty stressful the past year. And with not feeling well myself, my stress and anxiety spiraled out of control. It’s something that I’m sure has building for many years, and finally, I couldn’t deal and shut down this past year. In the last few months it was pretty bad and lead to depression, so I finally sought help which for me is a really hard thing to do and to talk about. But thankfully, I have an amazing doctor who put me on a medication to help with all of it. I’ve also been working on my coping skills and my work life balance which is also helping ensure that moving forward life isn’t out of skew. These days as a society we talk about mental health issues a lot, and I think that while we aren’t all comfortable talking about our own, it’s imperative that people know it’s okay to seek help and say that they are not okay.

I also want to tell you that while this 20th Glad to Be Alive Day is so incredibly joyous, it’s also incredibly bittersweet. Too many loved ones, too many friends, were not able to survive twenty years, let alone one or two years. Their life and their stories ended without seeing those milestones and celebrations that I have been so blessed to see. This is one of the struggles this year, as it always is, the struggle of Why Me. Why was I so blessed when others were not? I know that there will never be an answer to this, and trust me that this is not the focus of this letter. But I want to just say that, I have never forgotten, never stopped loving. These fighters are always in my heart and celebrated too on Get Bad Day because they too lived and fought for all they were worth. Their battles were not lost. As Stuart Scott, an ESPN anchor who died in 2015 from cancer said at the 2014 ESPYs: 

“When you die, it does not mean that you lose to cancer. You beat cancer by how you live, why you live, and in the manner in which you live.”

So that’s been my year so far, and it’s not over yet. I am so fortunate to have survived, and I know how lucky and blessed my life really is. I continue to thank God for the miracles He has given, and for the people He placed in my life, YOU. You have made an impact on my life with your encouragement, love, thoughts, and prayers. So on this very happy and momentous 20th Glad to Be Alive Day, may we be reminded to see the beauty of the world when life makes you see only the darkness. Happy Get Bad Day to you the people who make my life as bright as it is!

19th GTBAD Letter

October 22, 2016

Fall is here. The leaves changed. We saw the bugling elk. We hunted for and found the Great Pumpkin. The nights and early mornings are cool once more, and as I write this, fog is still lingering, unwilling yet to let go of its hold on the world outside. Kind of like me this morning unwilling to leave the warmth and comfort of bed even to write you this letter. So here I lay, breathing deep thanks to my friend Vinny, my portable ventilator. Despite my overly relaxed state, my wishing you a very Happy 19^th Glad to Be Alive Day is no less earnest.

Life plodded along this year as it does every year. A brief recap of events this year includes: starting a new job working full time for my dad’s company as an office assistant (so grateful for learning more about his life’s work as well as his everlasting patience even when he catches me still asleep at 9 in the morning); continuing working part-time for my cousin Chris and his two thriving and expanding companies, Rowan Electric and Rowan Technologies (his entrepreneurial spirit and knowledge is amazing); welcoming my youngest niece Charlotte Emily Willey, daughter of my great friends Bre and Erik, in January (she’s so cute!); turning 30 (unfortunately I was sick); going to Vegas to meet my second cousin from Germany (again, I was really sick); and spending a lot of time with my family especially with my other niece and nephews, Sarai 17 months, Rowan 2, and Titus 4.

By far one of the biggest excitements was my continued involvement in One Cure, an initiative that focuses on translational/comparative oncology, meaning comparing naturally occurring cancers and treatments used in animals (dogs and cats) to those in humans and vice versa. One Cure is based out of the Flint Animal Cancer Center (FACC) at Colorado State University, where I interned for a summer. Those at the FACC and I have extremely close ties thanks to their involvement in my own treatment. Since last year, the FACC took huge steps to become a more prominent part of the conversation on how to treat and cure cancer in both humans and animals. To continue making a national impact, a brilliantly done short documentary made by my friend Joe Vasos was filmed and aired semi- nationally in 30 different PBS markets. My parents and I were asked to share our story and ties to translational oncology and our belief and hope in One Cure for the video. If you have not yet seen it, I urge you to watch the trailer on YouTube while we wait for the full video to be released online: search for “The Answer to Cancer May Be Walking Beside Us.” You can also learn more about One Cure and my connections to this wonderful organization at www.csuanimalcancercenter.org/onecure.

This year emphasized how the little things in life are often the most beautiful and miraculous! From the changing of leaves in the fall to breathing and walking, life is full of wonders and little miracles. Next year will be my 20^th GTBAD, and I find the anticipation building. I truly hope to celebrate big next year in some way.  It boggles my mind that it’s been twenty blessed years since that fateful day when doctors gave me three months to live, and I continually thank God for all the support and love I continue to receive! As always, you all are one thing that keeps me going every day, so from my heart to yours, Happy 19^th Glad to Be Alive Day! May your days be filled with love and laughter as mine are.

18th GTBAD Letter

October 22, 2015

Happy Fall Dear Family! It’s that time of year when leaves change and fall, when orange IS the new black, and when a certain someone goes crazy for pumpkins, giant pumpkins. Yes, I have an addiction that I am only slightly ashamed to admit. Among other things, October is also that time of year for an anniversary, my Glad to Be Alive Day—my 18^th to be exact. Because my 30^th birthday is only a few short months away, I feel more an adult than ever, especially given that I’m celebrating my second 18^th “birthday”.

I know for some of you, you’ll be reading this letter after the date, and I want to start with an apology for not writing this sooner. To be completely honest and open which some of you know is hard for me, I didn’t want to write a letter this year at all. I’ll pause for a moment to let that settle in. That’s right; I didn’t want to mark this year’s GTBAD with the one tradition that has not changed in eighteen years.

Which leads to the next admission from me: I am tired.  No, I am not merely speaking of the kind of tired that you get because you haven’t slept well or went to bed too late. Nor is it the kind of tired that you get when you have chronic illness or acute illness where every minute of every day is filled with a body’s battle to survive. I am talking about the soul crushing tiredness, and let’s be honest depression, that comes with eighteen years’ worth of medical complications that have left both my body and my mind kind of done. Which for me is pretty unheard of. Because remember those eighteen years? Those years never completely took me down quite like this.

For me, a lot of my struggle is that I am finally processing what happened last year around this time when we received the news about the BO, bronchiolitis obliterans. I would like to point out that BO might be more accurate than you think. Those night sweats from the steroids can leave you quite stinky. At this point last year, the idea of new limitations had yet to set in. I thought, “Take some medicine. You’ll feel great,” and I did. But with massive steroids comes massive side effects which are minimized by stretching out the steroids to longer periods where I don’t get that amazingly false feeling of being healthy. So, I started to overdo it and overdo it. At twenty-nine,
I thought, “Step it up Emily. Now you need to be a responsible adult.”

And then my mom got really sick in March. Like needed to be in the hospital but refused to give in sick…wonder who she gets that from. She’s doing much better now, but she is still recovering. Because I know it’ll amuse her, she’s on oxygen now due to low oxygen saturations, and she likes to call us the oxygen twins, our own little circus.

With her sick, I tried to take over a lot of her responsibilities, babysitting my adorable nephew Rowan, household chores, cooking, etc.; again, the adult parts of life. All the while, I still had my own responsibilities, work, my own chores, and managing my own medical issues. Let me just say I failed massively because one of those things on that list got tossed to the wayside and it wasn’t the normal adult responsibilities either. Today, I am paying for wanting to be normal. Sure with exercise and prioritizing my life, I can, and will do better. And no, I did not do myself any major harm, but I have in the process shown to myself that normality may not be in my reach. Above all, that makes me immensely sad because I suppose I always thought that normal would be within my reach.

Before I leave you all in the same state as I am, I want to tell you that there is still joy in my GTBAD this year just as there always is. Because it comes in the form of tomorrows. I have had eighteen years of tomorrows that have made my life incredibly blessed because it gave me the ability to see and do things I never thought possible. Plus, I always hope. I hope that tomorrow is much better than today and this year. I hope that life stops throwing such wicked curveballs at my family and me. I hope that I will learn to manage my health better than I am now. I hope that nothing will keep me down because I KNOW it won’t. This past year has just been an accumulation of bad events, and they happened to get the best of me until now.

Do you want to know MY reason for even having a GTBAD, the reason I write this letter every year even when I sincerely don’t want to? My GTBAD is a chance for me to reconcile all that has gone on the past year and to come to the realization that my life has been, is, and always will be blessed. No matter the small and sometimes big things happening in my life, I got this. My life is amazing and will be amazing because I choose to believe so. So like the old adage, I count my blessings: my parents, my brothers and sisters, my family, my adorable little nephews and my beautiful little niece (yes I now have a niece!), my dearest friends, my faith, my wonderful jobs, my crazy dog, my coffee, my giant pumpkins…Okay, I’m straying a bit, but the idea is that I have food in my stomach, a roof over my head, relative health, and amazing support. Blessed indeed.

On this 18^th Glad to Be Alive Day, I want all of us to remember that positivity is not innate. It has to be worked at, especially as an adult. Our culture and the responsibilities of adulthood can drive the positivity right out of any adult’s life. Adult responsibility stresses us out and makes us incredibly grumpy sometimes, and yes, I am speaking personally, but the key to happiness is balancing it all. My tomorrow is figuring out the balance of my health and what I dream of doing as an adult. I don’t quite know yet what that looks like although I know it won’t look like a normal adult. And that I am learning to accept.

Happy 18^th Glad to Be Alive Day! May you remember you are blessed with all the tomorrows you had and will have in your own life.

17th GTBAD Letter

October 22, 2014

 

 

Here’s the synopsis of a story of a girl: A girl lived as joyously and as fully as she could in an imperfect world.

A simple fifteen word sentence with nothing deeply profound within. I admit until recently, I was vain enough to expect my life to consist of a vast amount of profound world altering achievements. I don’t really know how I was going to change the world; it’s not like I thought I personally would find the cure to cancer, solve world hunger, or even create world peace. However, I felt like a failure because I wasn’t changing the world. I felt like a failure because not only was I not changing the world, I was utterly failing at being anywhere near to a normal independent and successful twenty-eight year old adult. To me, my life held nothing profound. While my parents, and I’m sure many of you will argue, that the profundity of my life is not nothing, what matters is that to me my life was not what I believed my life should be.

My life’s summary had to change, and I had to change it because only I can determine how I see my life. I now have no expectations of being a person whose name will end up in the annals of history, my story will not be heralded around the world, and my life will not and should not serve as an example to others. Like every human on this planet, I only want to be able to function day in and day out, to contribute positively to the world, to love my family and friends, and to accomplish those few dreams I can. I simply want quality of life.

Usually, how you would rank your quality of life is not something you think about unless you feel your quality of life is lacking in some way. As I stated in last year’s letter, my health and breathing have been gradually declining over the past year and a half, and three weeks ago we learned why. I have a new disease call Bronchiolitis Obliterans (BO). You can’t imagine the fun I am having with telling people I have BO. Those people then think all I need is a good shower to cure my new disease. Unfortunately, BO can’t be cured with a shower, and BO is not a good thing. As the name states, it literally obliterates or destroys the bronchioles, the smallest part of the lung. If you’re a technical person, as I assume many of you are, I suggest you Google it to get a better description.

What does this mean in the long term? Well, we don’t really know. As per usual, my body has decided to do something abnormal and rare, and after seventeen years of abnormal and rare, I think it’s better if we really don’t try to give this new diagnosis parameters. I will admit though that I am thinking of petitioning the Guinness Book of World Records for the title of “Person Living with the Most Rare Diseases.” The long and short of this newest health crisis is that I have a lung disease that has destroyed a significant part of my already small amount of functioning lung. My quality of life declined over the past year to a point where I could no longer function and complete the daily and basic needs of a person. I didn’t realize how bad my health had become until I started taking one of the medications that treats BO, steroids. Literally, I went from being a couch potato to being a cyclone of energy that cooks, cleans, bakes, walks, works, and accomplishes a very long to-do list. I sleep a mere seven hours and feel refreshed rather than unrefreshing twelve hours. It’s been amazing. Like I said before though, BO isn’t a good thing because BO is not curable.
 

Unfortunately, it can present a serious threat to life, but there are medications out there that can help stop and/or slow down its progression. Only time will tell. I am currently in week three of a four to six week course of IV steroids. I personally feel like I am more stable, able to breathe, and to actually live again.

Which brings me back to that synopsis. That is what I want my life to be. My world, our world, is imperfect. We can’t change that. We can’t make life a fairy tale where nothing bad happens and where everyone always lives happily ever after.  I can’t change the fact that my health quite frankly sucks. It does, and at twenty-eight, I think I have the right to call it like it is. However, I don’t want to live my life as the biggest downer on Earth. What a waste. What a waste to live your life filled with negativity and a “Woe is me” attitude. Now that really would suck. I want to live joyously, humbled, and filled with love. I want my friends and family not to pity me because I now have more health challenges. That just happens to be my lot in life, and by now, you should understand I am a survivor.

Many people have been wondering how I am dealing with this newest health crisis, and I have to be honest with how I am dealing with it. I am truly at peace with this newest challenge because I have Faith. I believe in God. I believe in Heaven, and that my struggles in this world will be erased in whatever comes next. I have Hope. I hold strong to beliefs that were there seventeen years ago and remain even today.

I also have the greatest crack team of doctors, nurses, and staff taking care of me. They look out for my wants and needs, my version of a quality of life. I have an amazing support network that includes you. People who day in and day out give me the greatest friendship and love. People who make me laugh and are willing to joke even about the seriousness of life.

Being diagnosed with BO doesn’t change much in my life. I’ve lived with its effects for a year now. Now, I merely know what has been going on inside my lungs for a while, and now, I have the opportunity to gain back some of the quality of life I lost in the past year. I am grateful for whatever health I can regain. Today, I can accomplish things that I love doing like laundry, going to work for my cousin at his new electrical business, singing off-key in the car, playing with my nephews, baking, pumpkin hunting, and driving in the mountains. It makes me realize I have dreams I really want to accomplish especially traveling.

My Glad to Be Alive Day isn’t meant to be an example of how to live one’s life. It’s not meant to be a form of the “Pain Olympics” whereby I say my pain is worse than yours. I’m merely hoping to share my deepest thoughts with you, dear friend. That you may understand my life better. That I can tell you, on this my 17^th Glad to Be Alive Day, I am still most assuredly still alive and kicking. Above all, I want you to not feel sad for me because, in my case, I am so lucky that I already had the greatest bonus of an extra seventeen years and counting added to my life.

We don’t know what is coming next. I’m not sure I want to know. But, I do know that I will strive to make my life as close to that simple fifteen word summary. I will live joyously and fully because above all that is what I believe in. A life filled with love, laughter, hope, faith, friends, and family. Those are things that embody my Glad to Be Alive Day, and they are profound and life changing if we take the time to appreciate them.

So on this very happy 17^th Glad to Be Alive Day, celebrate all the love, laughter, hope, faith, friends, family, and simple joys in your own life. Wishing you, as always, a most unquestionably Happy Glad to Be Alive Day!

16th GTBAD Letter

October 22, 2013

 

 

Fall has arrived once more in Colorado. Winter will soon be here.  By far, fall is my favorite season. Given the track record October and I share, it would be easy to assume that for me fall is most decidedly not a wonderful time of the year. Somehow, though, it is. Beyond the tragic anniversaries, seasonal illnesses, fear of the flu, and weather induced migraines, fall is downright magical even hopeful. It’s the time of year, the one season that perfectly reflects me and my life.

 

The biggest reason fall represents me is that due to my health, I’m already in the fall of life. I’ve been born, grown up, had some really awesome bright days, and moved on into the fall of my life that tends to have a unique mixture of days. Here in Colorado, fall is a time where the weather changes from summer to winter to fall, often within one day. Some days are beautiful, bright, bringing a joy that rivals the light of summer. Other days rival the seemingly never ending darkness and bleakness of a winter day. But in all honesty, most days today are fall like, neither super bright nor bleak. Instead, the days are the perfect mixture of averageness, of fallness.

 

Many things have happened this past year, but most are neither here nor there. The biggest event of 2013 is that it marks the 16^th Glad to Be Alive Day, and I’m very happy to say my second Sweet Sixteen. Like my first Sweet Sixteen, I have a sweet new ride in the form of my very own tandem bicycle thanks to my cousin Carole and her husband Joe! I’m fairly certain that the people at the bike shop think I am demented based on the happy dances, spontaneous clapping, and a serious case of the giggles I displayed when we picked the bike up.  I’ll never truly drive it, but after the first few rides, my dad knows I like to think I can. As I fondly told him during one ride, “I’m enjoying this ride. I’m enjoying it by watching where we’re going!” I can proudly say that I’m

working on not being a backseat driver. I’m also happy to announce that as of writing of this letter I have no new health issues to tell you about despite my lungs not functioning as well as they have and could. We’re working on making my lungs function better through exercise, and this endeavor is one of the reasons we seriously pursued getting a tandem bicycle after two years of not cycling. It also helps that my Porphyria is now under control, and I am once more enjoying the beautiful Colorado sunshine. The other major news of the past year is that we have moved. We now live in Monument, CO. Our current address is below, so if you would, please change your records.

 

Sixteen years ago, we were fairly certain how my life would turn out, and today life is filled with a wonderful uncertainty of what I’ll do or be or how life will end up. At 27, I’m still trying to figure out what being an “adult” will mean to me, yet this year I find myself happy with the mixture of days even the average ones. It’s the average days that keep me whole. In between those days, I’ll make sure to make my own summer. I’ll hunt for the Giant Pumpkin (this year’s weighed in around 80-100 lbs.), drink hot coffee without feeling ridiculous, eat tons of candy, and spend time in front of a warm fire watching the leaves change.  As the leaves finally fall to the ground, I’ll count my blessings, 16 sweet years worth, and I’ll find comfort in my belief that everything in life, even the falling leaves, has purpose.

 

It is my fervent hope that this letter finds you and yours also enjoying the seasons, and that you know how much love and gratitude I have for all you in making my life possible. Thank you for being a Godsend.

 

Happy 16^th Glad to Be Alive Day!!

Cindy Markland's Letter

Life really is a gift, but it comes with a mix. The challenges are all experiences from which to grow, though some challenges offer up achievement, some offer up happiness, some offer up hardship, and the list goes on. I think our birthdays are reminders of our GTBD, but sometimes those GTBD's come in another form like from a life trauma. My GTBAD comes from such an experience. Being pregnant is such a time of excitement, anticipation, changes, and most of all the joy of having a baby, but mine turned into a survival experience. I was diagnosed with preeclampsia (a life-threatening diagnosis) where your kidneys and liver begin to shut down and create a host of complications for mother and baby. The earlier this happens in pregnancy the worse it is. My diagnosis came at 28 weeks, a far cry from the 40 weeks to full-term. My initial admission to the hospital left me in a state of shock that I was going to have deliver my precious baby at 28 weeks, and if I didn't, I could die. I became so sick, everyone had to do everything for me. I was hooked up to so many tubes coming and going I don't know how anyone made sense of it. It was a feeling of complete helplessness on a level I had never experienced in my life. However, with the tremendous amount of excellent care and support from the medical staff, husband, family, and friends I did not despair. I felt everyone's prayers in a way I cannot adequately describe. Then my son was born right on the 28 week mark, and I could not hold him or care for him or bond with him as he had to be taken to the Neonatal Intensive Care Unit known as the NICU. He then had the countless number of tubes that I don't know how anyone could keep straight. It was the most difficult day of my life instead of the most joyous. I didn't know if I was going to have to sign a Birth Certificate or Death Certificate for him during the first 24 hours. I was able to recover in the weeks following, but his first 4-8 weeks were touch and go. I am happy to say after a 3 month NICU stay he was able to come home, but not without struggles. He is now a happy healthy teen :). My GTBAD happens to be my son's birthday, so it's a two-fold day for me. I'm glad to be alive, and I'm overjoyed and glad my son is alive. All this brings me back to my first sentence of life being a gift, you just never know how it will wrapped, but it is always treasured.

Ann Montgomery's Letter

Dear Emily,

Congratulations on your 15^th Glad to Be Alive Day. Each year added is a gift to you and all of us. So, my letter will be about gifts.

The first gift to me was my birth/my life. Yes, 61 years ago my parents were blessed with a baby girl they named Ann Marie. Little did they know I would be the second with ten more to come. My parents loved me, nurtured me and finally sent me to fly on my own. The gift of life is not to be taken for granted … it is to be cherished, molded and formed into who we will be. It takes constant work and repairs along the road to maturity and wisdom.

The gift of wisdom. Wisdom is a gift to use every day. It helps us be the person we are and I love the person I am. I love with my whole heart, feel other people’s pain, I have a sense of humor, I give with complete joy, and I have made the most wonderful friends throughout my life.

The gift of friendships. I have friends that go as far back as elementary school. I have friends I met last year. I have friends who I know will always be there for me. I have friends I will always be there for. My friends come in all sizes and shapes; all colors and religions. They are responsible for who I have become…that lady I love. My friends are more precious than gold. These people are not to be taken for granted either. They must be tended to like a fine flowering plant of peonies (my favorite flower). Gentle loving care.

The gift of family. How could we be part of the human race without our family? Good or bad, wealthy or poor, sick or healthy, happy or sad, our family is our rock in life. We would be lost without a connection to a family. We wouldn’t be able to turn around and know we have someone with the same genes running through their blood. With billions of years of the earth coming together in what we know now, it was destined we would be born to a family on this earth. God decreed it. I was blessed with a family of my own. I had the husband I loved and my children that I adore. God even blessed me with a son-in-law. What more could I ask for? (Grandchildren!!!)

The gift of God. Actually, God would say we are His gift. From the minute we were conceived we were destined to be a gift to His world. Thank you God for the many gifts you have given me.

The gift of Emily. Emily you are a gift from heaven. Every minute with you on this earth has been a gift to humanity. Without you, my life would be incomplete. I wouldn’t know the true meaning of courage or hope. I would never know the degree that I could love and admire someone. You are that fine, flowering peony plant.You supply me with surprise, love, beauty, and the knowledge that there will always be someone more important than myself. So what is there to realize?

You realize that peonies bloom on peony trees. A cat doesn’t become a chicken. Tulips are tulips not roses. You realize that to be you is great. You don’t have to be anyone but you. You are blooming in your life just as a peony blooms on a peony tree. Further, a beautiful peony flower does not worry about when it will wilt and fall to the ground. It does not compete with the flower next to it; but rather blooms with its whole self. I love you Emily…………Ann Marie

Bre Willey's Letter

My Sister Emily

As the usual stories start, Emily and I met when we were very young. I was in 3^rd grade and she was in kindergarten. Our parents knew each other through the elementary school we went to and even though I didn’t know it when we played in her backyard so many years ago, she would become my best friend and one of the most inspirational people I know.

Emily and I became closer when my father passed away from cancer and when Emily was diagnosed with cancer, not even a couple of weeks apart in time. With each day that came, I grieved for my father and worried for my friend. I was scared for her, and still am today to some extent. Even though this was the most difficult test anyone could ever face, the test of wanting, needing and fighting to survive such a devastating disease, Emily remained positive, upbeat, and even, with no hair, managed to keep everyone around her at ease and hopeful.

When I think of how Emily is an inspiration I can’t think of one single thing to say. Not because there is nothing to say, but because there is so much to say. When I think of all that Emily has done because she is determined not to let anything or anyone hold her back, I am completely in awe and amazed. I can’t help but constantly watch her to see what she will attempt next. She has accomplished so much in her life and I know there is only more to come. I feel with all my heart and soul that Emily was placed on this earth for many specials reasons and I know that she will be such a bright light for so many people to be guided by, myself included.

Emily makes me want to be a better person inside and out. She is always there for me when I need a hand, and always has a positive outlook no matter how negative the situation. Not only does she make me want to be a better person, but she teaches me so many lessons on how to live. I watch her really truly live and I cannot help but be completely inspired by her and her actions. In many ways her actions have changed me into a better person. The confidence Emily exudes in every situation and her cool, calm stature is something I hope to learn from her along with many other important life lessons, lessons that teach you how to really live.

Even though Emily is not my sister by blood she is my sister by heart and I love her dearly.

Breanne Montgomery aka BOB...now Breanne Willey! <3

Greta Wilkening Letter

Dear Emily (aka Auntie Em):

Today I received my first "glad to be alive letter" from you. I appreciate being part of your mailing list. Your letter made me smile; not all of it of course, but your perseverance and ability to celebrate all that is good made me happy.

I am thrilled that your life has been marked by some marvelous milestones this year, and sorry for the boulders that are in your way as you put one foot in front of the other and carry on. I am delighted that your family escaped the fire without losing your home, but it makes me so sad to consider those that didn’t.

I am thrilled and glad to be alive. There are so many good things in my life. I meet wonderful people, like you and your mother, and we have the chance to celebrate accomplishments, and happy times together. This week I traveled to Houston, hugged my daughter, and had the opportunity to listen to her play violin in the Rice Symphony Orchestra. What a privilege and pleasure that was for me. Last weekend I saw my son. We celebrated his birthday, and talked and enjoyed each other’s company. My husband and I are both healthy, and we are going on dates again. We have moved close to the Botanic Gardens, and have found that we can spend an hour or so walking around, exploring a new path, or finding a new flower, and feel relaxed. We have good friends; I know that they care for us, and that we are available for them. Some days I can be kind to people I meet and don’t know because it’s the right thing to do, and it takes no more energy than being crabby. Some days I can’t sustain that, but maybe I’ll get better at it if I practice. I am tremendously fortunate.

Thank you for your note. I am thrilled to be a part of your GTBAD project, and delighted that despite all the hard parts of life there is so much pleasure to be had.

Greta Wilkening

Dad's (Allyn's) Letter

My dearest Emily,

 

I can’t imagine life without you – what a cliché but never – never – more true.  Somehow God has provided the right balance by using all of us to celebrate your 15^th milestone special celebration of life.   What an incredible tapestry of lives and emotions that continues to grow and draw others in.  Yours is an incredible story with chapters yet to be written that I pray you will never tire of reaching for or retelling to others.

It is good to reflect back, to remember the journey.  Your anniversary celebration does that for me, so this is some of what I recall.  To sit by and helplessly watch the life being drained from you was nearly unbearable.  For me to find peace with the decision to totally and completely give you up into God’s hands – so that your treatment and care could make you a miracle – was perhaps the hardest thing I have ever done.  Others would say I had no choice – when you are at the end of the road with no where else to turn – but I know in my heart this is not so.  Your road to survival has been littered with so many seemingly insurmountable obstacles that a normal person like myself would hardly get past one let alone the nearly countless ones you have endured.

 

During the very first hours of this journey – turned into days – then long agonizing months – and now years – I marvel at your resilience and willingness to push on.  Even as one door closes, you are already reaching for another.  Is this easy to do?  Never – I see the daily burden you carry.  I know you must reach inside yourself to find that little something special to give you the strength and desire to push on. 

 

It seems the battles – whether big or little – are always uphill struggles.  Everyone gets tired and wants to quit, but you understand that by doing so will rob you of the reward – the unimpeded rush of exhilaration and thrills of the no care in the world downhill ride.  Rewards take all sorts of shapes and sizes – from “do-over” trips to exotic locals to a Starbucks coffee on a cool fall day – to searching for the great pumpkin or being nuzzled by your puppy – to sitting in the company of people you love and sharing life’s stories and giggles.

You have learned that character is built only on the uphill and that the downhill rewards are often short fleeting moments that are only temporary lapses from daily reality.  But it is character and these rewards that help refuel and add to that little something special deep inside us.  I believe we have learned to cherish these special treasures – no matter how small – so that we can draw on them to help us over the next daunting obstacle.  Please know that you have provided me treasures galore along this life’s journey.

 

I believe we all learned together how to find faith, hope, joy and love in even our darkest moments – that is what glad to be alive means to me.  And I use these lessons everyday thanks to you.  Happy Glad to Be Alive Day Emily - not just on this special 15^th anniversary day – but each and every day I get to see you!

 

Love  Dad

 

My 15th Glad to Be Alive Letter (enhanced version)

October 22, 2012

 

Dear Family and Friends,

 

Milestone. It is a straight forward word, one that could literally mean a stone marking a mile. Of course this milestone is located on a road or path, a path that at least one person journeys down. Thus thanks to simple logic, and luckily from a language that can be turned upside down, we get to our simile. That life is like that road or path full of milestones that mark our journey through life. Now here's the fun part of this simile: does the person choose the milestones, do the milestones just exist, and perhaps do the milestones being milestones transform the journey of the person?

This is what I find so tempting about this simile; something I find quite obvious. The person on that journey seems to be in control, being the driver down the road of life (just play the game Life!) or even as the person who puts one foot in front of the other. It's perhaps the greatest illusion of all in life. Don't get me wrong here. I believe in free will and freedom of choice, but that path, that journey I write of can deviate. There are some things in this life that we simply cannot control. I couldn't control the fact I had cancer, or most importantly that I SURVIVED cancer. Those side effects I have, I can't control that I have them. I can't control that with each year brings more and more health struggles (We'll get back to that later!). What I can control are the choices I make in reaction to those uncontrollable things. The strength to move on with life, to live it, to love it, to be thankful for it.

This year by far has made me aware that I can't control a whole lot in my life. As most of you know, we live in Mountain Shadows. My neighborhood was devastated by a wildfire that killed two and destroyed the homes of 346 families. When we left that day, we believed all was lost as the fire rolled down the hillside creating an apocalyptic landscape that will haunt me the rest of my life. That first night as I cried and grieved, I told my cousin I didn't know how much more in life I could handle. The answer was you handle it because you have to. Days passed and you go right back into that hardcore survivor mode people who deal with illness know. You put your
foot in front of the other. You have hope. You have love. You readjust your now with the past you had and the future you thought you'd have. We learned days later the devastation missed us by a block or two due to the heroism of the firefighters and the grace of God. Our house was still there.

The same week as the fire I would be tested once more as I began yet another struggle with my health by finally receiving a diagnosis for a problem I had dealt with for months. A simple thing like blisters on my hands turned out to be a disease called Porphyria Cutanea Tarda (PCT). Apparently, the band AFI made a song about PCT, at your own risk, listen here. The long and short of it is I have a chemical in my body that builds up in the skin and reacts to the sun causing blisters, skin fragility, and iron overload. The cure? Anemia created by "donating" a pint of blood every few weeks. Until I have it under control I have to avoid sunlight. Period. Colorado is even sunnier than Florida for those of you who think it's a piece of cake. I even go into sun withdrawal in winter thanks to shorter days. The other fun part of PCT is it is not cancer related! It seems I’m just lucky!

These two things were milestones in my life. Like cancer I didn't get them by any choices I made. They just happened. Here is the really cool part: I had many more milestones this past year that I did choose. I graduated cum laude from college. I'm employed with the same publishing company, and I traveled for work twice, once to Houston and once to New York City. No, Mom didn't go with me on either! Furthermore, I spent a glorious amount of time with my aunt and uncle from California. Finally, from January to May, I planned so many parties, I seriously considered becoming an event planner. Why was I planning so many parties? There were two big events that I was blessed enough to be a part of. First, my best friend Bre married the love of her life Erik in May, and as maid of honor, I was allowed to go nuts with party after party celebrating their marriage. The second event was welcoming into our lives a very cute bouncing baby courtesy of Scott and Yvonne. On April 14, I became an auntie which means you can officially call me Auntie Em...can you tell I am head over heels in love with my six month old nephew Titus?



Do you see why I love him so?

So you see, milestones come in many shapes and sizes. They litter our paths called life. They are a way to mark the passage of time and our own transformations as people. They serve us and others. We often share them. My greatest wish this year is that you celebrate one of my biggest milestones yet, 15 years cancer free. They've been long wonderfully awful and awfully wonderful years. I was not always graceful in my handling of situations, but you do what you can and then do more when you can. You have faith and hope, and most of all you rely on the love you have for others and the love they have for you. As always, dear friends, you have my gratitude for keeping me sane and alive, neither a small feat. No matter what the next 15 years hold, I am always certain of your support, and that with you I will reach many more milestones!

Love always, and hugs,

Em

14th GTBAD Letter (original)

Original 14th Letter- page 1

Original 14th Letter- page 2

13th GTBAD Letter (original)

Original 13th Letter- page 1

Original 13th Letter- page 2

12th GTBAD Letter (original)

Original 12th Letter- page 1

Original 12th Letter- page 2