Redefining My Life
Almost 8 years ago my life changed forever when I was told 4 simple words; "It looks like leukemia". Two years ago my life was forever changed again when I decided to embark on a two year long journey back into the walls of Kosair Children's Hospital, a place that forever haunts and engages my memory on a daily basis.
I wrote this blog originally as a response to my friend Elizabeth Lauer's very sweet review of my exhibit and well me as a person. No matter how many times I have fallen she has always been there for me. I love her so much. And I am so proud to call her my friend.
When I began to write this, it wasn't going to be such a long blog post, but then as I was writing I started to remember more and more of my own personal accounts working on the project. As Liz gave a brief summary of what I personally did as a photographer to work on it, I relived many of the life changes that happened as a result of the project. Life moments that I had to face in order to execute it. Personal pains of a very real truth, people die. The hurdles I had to jump through during this project all the while learning to cope with my diagnosis of bi-polar disorder. Not understanding how important is was to take care of myself, and what happened to me when I didn't. The things I learned as a result of failing over and over again while working on the project and in fact my life in general over the last 22 years. And all the while noting how I wouldn't have been able to pull myself back up over and over again if it wasn't for the people who helped me along the way. Whether it was failing to shoot a story properly at first, personal life, or financial situations…this was the hardest thing I've ever done in my life.
I choose to be so detailed about it all because for one, I know that means less people will read it, leaving me the confidence to know I can be as honest and open as I want too. Not just that, this was two whole years of my life, something I rearranged my entire life around to finish. I also know that if you were to continue reading till the very end, you had questions and hopefully I answered. And writing the response to Liz turned into a personal recollection of everything I learned and went through to learn it. I reached back in my memories to the time frame in which I met Miss Lauer, in college at WKU, where the photo bug dug deep into my skin. I reached back even further, this was four years in the making before I ever got to Western. I knew I was going to do something I was passionate about when I got to college. Looking back on the project, it's practically a miracle I was able to pull this off.
But back to the story Elizabeth wrote about.
I think when I threw that word leukemia around it was really the word cancer, which is a lot more jarring than saying leukemia. It was to shock people because I know what that word means to everyone else. To other friends I was much closer with in college were conversations that were in no way using the cancer word carelessly. Shocking people was a defense mechanism. By using the word carelessly to act like having cancer was 'No B.D.' made me feel less vulnerable to any emotions about that time in my life.
I was still very much so, up until I actually returned as a former patient, a disgruntled cancer patient who was no longer physically sick. It was after all the only reason I decided I wanted to be a journalist and later a photographer.
Back then, I arrogantly thought it was somewhat humorous when people had talked about doing stories on people with cancer. However, I do want to note it was only referring to the kinds of stories that had no range of emotion that were just stories about kids with cancer. No other story than just a kid who is sick.
Cancer is a journey, a beautiful and tragic journey. The range of emotions you experience and powerful life moments of triumph and truth. The lessons in life are profound. Cancer is a gift to the survivors who let it be one. Cancer is tragic, people die. Yes they do. And that is a sad truth. However, the amazing truth is that are more kids that are surviving than who aren't. The new thing is that kids are now surviving. I've been cancer free for almost eight years, others so much as 25 and 30.I wanted people to see all of that. I wanted to include the story that goes along with having the disease. Thing is that's so fascinating, everyone's experience is so different, yet the same.
I do have to thank someone or a group of people shooting from a different perspective than I saw things. Each serves their purpose, even I'm willing to agree that sometimes we (those speaking on behalf of fighting cancer) have to tug at people's heartstrings in order to get people to really care and urgently help. Those stories that made me uneasy as a patient helped form the ideas in my head about what I felt was something I could add to the discussion.
As I'm writing this I realize that there is no right or wrong way to shoot cancer, because there are so many ways to tell it. Everyone sees it in their own way, and there are so many things you can choose to focus on.
I think a lot of the frustration when I was a patient and seeing things on TV that I felt was merely highlighting all the bad aspects. It has to do with how desperate I was to never feel weak during treatment. Anything that was aimed at continual images of the pain, it made me angry. It was a reminder when I was sick how serious it all was, that it was cancer. I was too afraid of being scared that I never wanted to think about how serious anything was, I made jokes about it.
Shaved my hair into a mohawk, I don't have the picture anymore because I gave it to a former nurse, but there is a picture of me out there where I'm literally smiling when my hair was being shaved off.
For example, when I was told I was supposed to be having a transplant (something we had already known 3 family friends to die from) I said, "So….where's my xbox?" It was a joke because I had been asking for an x box for about a month casually. I didn't actually expect one when I asked him this, it was just my way of joking about the fact it was such bad news that an expensive present should be expected. My whole family laughed, and that made me happy. We had been doing this whole deal for about 7 months; we had to just learn to roll with the punches. I didn't want them to see me panic. The idea of transplant was terrifying. Luckily, I ended up having an appendicitis, a very rare complication of chemo. I know hearing the words lucky with complication sounds like an oxymoron statement but that is so far from the truth. Because of that complication, which I didn't realize how big of a deal it was until I went in for my last surgery to remove the line from church, the guy looking over my chart saw that and says, "Oh that was you, I remember hearing about that." Because we got so lucky that I made it through that they didn't want to go through with a transplant until I relapsed. Pretty much everyone thought it was inevitable, went to the doctor once a month for a couple of years. My doctor said that the extra round of chemo would fix how my chromosome grew back in an awkward way and it did. I have yet to relapse since. And the odds of my survival were about 50%. I'm not too worried about a relapse these days as I'm about to hit my 8 year mark. Every time I get sick though, which hardly ever happens, I am always oober cautious about any sign that I might relapse. It doesn't cause a massive break down of fear anymore. I think I've come to terms with the fact that if I ever do have cancer again, I see no reason any more to fear relapsing. If it happens, it happens.
Crazzzyyyyy stuff.
However, as Dr. B (Bertaloni) has said, "Every time a child is diagnosed they want to know the percentages of survival rates. Is it 40%, 60%...my response is always this. No one is ever 40 or 60 percent alive".
The way I shot something as a former patient though is merely a slice of a slew of people's version of the story, each adding to the discussion of the topic. Mine just happens to be that of a survivors perspective.
As I said in my speech during my artist talk at the Kentucky Museum of Arts and Crafts where the show was being displayed; I can tell you about: thick needles being inserted into my spine, painful muscle shots with extremely long needles in my thigh, losing all my hair, passing out in the elevator because I was being hard ass and refused a wheelchair that day, my skin becoming so cracked and dry from chemo therapy that it made it hurt to stand on my feet and even bleed, not being able to taste food properly because my taste buds disintegrated, how awful and lonely spending even just 6 hours in a hospital room by yourself is, how frustrating it gets at a certain point when you're living in the hospital for months at a time, spending weeks without eating anything so much as saltine crackers and sprite because I literally couldn't eat anything else without puking and even so I still puked, how humiliating it is to have to wake your father up in the middle of the night to change your sheets because you're getting so many fluids that you wet the bed, how uncomfortable it is to have a fever of 104 and have your nurse make you pull the covers off and get down to your sports bra and shorts, turn the thermostat down to 60 degrees and then cover your entire body in cold wet rags. The list goes on.HOWEVER, when I look back on those moments I use it as motivation for what I've gone through to overcome the next big challenge I face.
“Suffering, I was beginning to think, was essential to a good life, and as inextricable from such a life as bliss. It’s a great enhancer. It might last a minute, but eventually it subsides, and when it does, something else takes its place, and maybe that thing is a great space. For happiness. Each time I encountered suffering, I believed that I grew, and further defined my capacities – not just my physical ones, but my interior ones as well, for contentment, friendship, or any other human experience.” -Lance Armstrong
When I talk about Kosair Children's Hospital I mention my nurses and my doctors and how amazing they are first foremost before any of that other stuff. Who remarkably are still there for me. I talk about the support from my family. I talk about the pranks that were played, late night cosmopolitan quizzes, watching movies with my nurse Paige at 1am, wheelchair races, the families you meet and lean on, nurses that will stop at nothing to get you to smile and let you know they love you. My loud and crazy end of chemo party complete with whip cream and squirt gun fights, haven't in the last two years seen an end of chemo party that Kosair throw like mine.
(my former nurse Nicola, an amazing human being and the biggest sweetheart I know)
Moment's like those are so powerful when going through something so tragic that they outweighed the bad, at least for me. And that was a big thing I wanted to offer when I came back in the way it was for me. And I wanted other people to see what the staff and I see, so that they could possibly not be afraid to be around them and provide the same.
Liz is definitely not the first person to challenge me on whether I had cancer or not because of the way I've chosen to lead it in the last 7 years after I was done with chemotherapy. I mean how many of you all actually know children who've had cancer. It's not THAT common, but still is the leading cause of deaths in children next to car accidents. However, I've still met hundreds of survivors, literally over a hundred childhood cancer survivors. Each one leads their life in very different ways after having cancer.
Quite a bit of us who are survivors, in my experience, laugh at the expectations people hold near and dear to their hearts about what someone chooses to do after they survive. Hate to disappoint you, but it didn't make me an angel. I resented having cancer for a while because of that actually. Resented those who felt they had the right to critique ME on how I choose to live MY life after SURVIVING a disease I had NO CHOICE in getting and NO CHOICE on whether or not I survived. Admittedly I resented myself too, I felt so guilty about being alive. That photo below is my fuck cancer photo. I was fresh out of chemo for about 3 months when this was taken.
Ha and I'm sure that me saying that in the photo lab was also my crazy 18 yr old way of saying, 'I got this' when it came to doing tough things (photo) and still having fun (partying). WKU was more excitement and energy and fun than I had ever experienced before that. In high school I was the one who was known as a teacher's pet and always had the right answers to questions in class. Friday nights were spent working on Biology homework.
When I got to WKU I immediately got distracted from every goal I set out for when I went there. And with my enthusiasm for life and new things, I like to soak up as much of it as possible. Pushing my body and myself to the max in effort for fun. Me like so many other cancer survivor friends, we take having fun very seriously. Not all, but a lot of us party like there's no tomorrow because for us the reality that their very well may NOT be a tomorrow, is unbelievably real. So shoot let's have fun! I'm more articulate these days about explaining this to people. Luckily partying has a different definition for me today and binge drinking (even if so up until recently) are not my only means for fun. Particularly as I get older, and hangovers more severe.
I think there was a reason more than just my priority of partying, but the way I used to treat my body and not take care of myself, that made Liz suspicious to cancer being real in my life. If your given a second chance at life why wouldn't you take extra care of your body. It's a fair enough question. I would stay awake for days at a time, spending unhealthy late nights in the lab. I think a lot of people thought I was goofing off, and admittedly I was a lot of times. In between though I soaked up more information in three semesters and created enough of a foundation to learn to teach myself. If there was a photojournalism program in Louisville I would've done that, but it wasn't possible for me to continue the project and go to school in Bowling Green. Except for late at night, there still was always something going on (even if it was less than there used to be). I liked sleeping in the lab because I would wake up thinking about photography. I started to become obsessed my second semester of school with photography. I was still doing both though and that's what was wrecking my body even more. I would work hard in photo then I would party harder and going out taking pictures at the same time. That was when Brian Masck, my basic photo teacher, finally stepped in and let me know his concerns. Before I was to finish my freshman year he would tell me something on the last night of teaching at WKU that shook me. He said to me, "Paige, if you keep living the way you are and how you are. You're going to end up killing yourself. I mean if you're wanting to get to the serious truth, that is whats going to happen to you." The summer after that conversation was when I started to work very hard, the first time, to make some solid changes in how I treated my body. Then I started to get the ball rolling on getting access at Kosair.
I'll never forget that conversation Liz and I had at McDonalds over pancakes. I wanted to know why she was dressed so fancy for it being in the morning and she wanted to know why I was not taking pictures. Liz has high expectations of people. "It's OK to take a semester off to save for a car or whatever. But it's not OK to just sit around all semester and pick your nose." She continued on about the importance of me going back to Kosair because not everyone can just walk into Kosair and get a story.
That's not exactly how I got access, it definitely was something I had to earn and be crafty about. I approached the child life specialist the summer after my first year at WKU when I didn't get the internship I wanted. The idea was to shoot something there about it and she said she would talk to the art therapist. I never heard back.
I had a back-up plan. I was going back to my old cancer camp anyways to volunteer, and I would find a story there. It happened by chance really. I had been hanging out with the nurses at the nurse's station to get some medical photos. The nurses station is where they administer drugs, chemo, or take care of any patient that needs attention when going to camp. During what is called "horizontal time" where every camper is to take a nap as a break from all the activities that happens each day. I happened to be hanging out there and Abby, one of the nurses and I decided to take naps there.
We had both been drifting off to sleep when the phone started ringing. Neither of us wanted to answer the phone when it started ringing so we both heard the answering machine message from one of the camper's mother. She left a message saying there was a family death and she would be picking him up early to leave. It was a mother who I had been introduced to by one of the nurses as a former camper to ease the parents nerves as their child was only 6 and going to be away from home for a week.
Every year there is one absolutely adorable 6 or 7 year old that captures the heart of everyone. And this year it was little Shawn Bowen. He reminded me of a little boy who I was friends with when I was sick, his name was Sean as well and he was six years old as well. Sadly he died during a stem-cell transplant due to complications. Later that night, I was hanging out again with them and I was there to hear one of the nurses Nancy talking on the phone to his mother. She was telling him what a BLAST he was having at camp. The goal of the camp is to have a non-stop day of fun for every child who is a camper there. You can go back as a camper as many years as you want, even after your no longer sick, until you're 16. That place is amazing.
I then heard the change of heart his mother had. She would be picking him up on Sunday at the end of camp instead of getting him early. She wanted him to have fun before he started chemo on Monday.
I immediately shot up and said to Abby, "That's my story!" Sunday at the bus stop where the parents pick up the kids I went up to Shawn's mother and offered to drop photos off of Shawn from camp that week. Meet them at the hospital to give it to them. I hung out with them and talked for a while. I had my camera in my backpack but never actually taking any photos or even brining it up. At least not until when we were parting ways I mentioned showing up tomorrow and taking pictures of treatment. She agreed enthusiastically and the next day I showed up camera ready.
On the last day of camp I had said to the nurses, "You know, I think I'm ready. Ready to be involved in the cancer community again. You know I'm not that kid with cancer anymore. It's time to put it to use."
On the first day I started shooting I'd run into an old friend from when I was patient. Lizzie Wells, someone whom I always looked up to when I was sick. She was so strong, appointed, and loved. I also knew one other thing, she rarely had family stay with her when she was in the hospital. A place she practically lived in and out of her whole life. It didn't take me long to figure out that he days were numbered. After the first day of running into her I hung out with her for a month up until her last waking moment before she passed on August 29th 2009.
It was a profund moment in my life. Never in my life have I experienced a friendship as I had with Lizzie. I had the priviledge to hold her hand during her last waking moments, to tell her how much she meant to my life to say goodbye. On the way to the funeral I was given a paper she had written on the reflection of her life at 18yrs old. She talked incessantly about wanting and deserving and having the right to be treated normally. The right to be treated like everyone else. She also noted that she felt like it may never have happened. It was in those thoughts, one's that I could relate to, that provided the inspiration for what direction I would take the project in when I would come back in 6 months.
In the time spent with Lizzie I met an entirely new staff, along with reuniting with old nurses and staff. I grew to know that it was more exhausting staying with a patient than when I was actually a patient. And when I went back to WKU that semester I eventually came to decide I would take a semester off to save for a car that you need to take the next photo class I was scheduled. Don't listen to Liz, you need a car. I also felt that I needed to take advantage of the fact that I had access now, and a more direct idea of what I wanted to do.
I didn't think it was ballsy, it just seemed logical. I had access and had no idea how long it would last, and it was a huge opportunity to tell a story. I talked with friends about my plans and dreams. It was going to happen, I had envisioned doing something like this since I was 15 years old, it never occurred to me that it wouldn't happen. I knew it was going to happen, but I did not know how hard it would be on me to actually execute.
Starting all of this was what I needed a push on. Liz was right about it needing to be done. She said that people needed to know about it, she suggested do a short portrait series and freelance it to the Courier Journal and write a short story about each kid. I already had notes and notes and notes about what I wanted to do at Kosair during my semester off, it was just actually making the commitment to it that scared me. Who's to say I was going to do it right? Nevertheless I started despite my fears because Liz told me so and Liz used to scare me. She'll put you in your place if necessary and everything she writes about me and how I was is true. How we've both grown to accept one another over the years and have her cheer me on was something I would never have imagined my freshman year of college. We have come to know one another and understand where one another comes from, accepting each difference at face value. And the story of our friendship is rare and hard to come by.
The art therapist, Emily Johnson, I never heard back from I ended up meeting when I was with my friend. On the last day I was there before I went back to WKU. Emily gave me a Tibetan healing bracelet and her business card. She said to call her if I needed anything. I remember when I finally contacted her and started brainstorming with her about what was going to happen. I came up with the idea to shoot something that would be in effort to bridge the gap between those who have never been through cancer and those who had. I had all kinds of doubts and fears. I found this quote from my hero Christine Amanpour, "There are certain stories you do and they make you think again about what you are doing and why you are doing it. And they make you realize this is serious and important and you by the way you cover a story or tell a story define the way the world sees that story. So you BETTER do it right! You better know what you're doing!"
Yet again, I couldn't help but think who's to say I was going to do this right? I told her my doubts over and over again and she finally one day stopped me and said, "You are one of the most self-critical people I have ever met in my life. I need you to trust in the process. Don't you think we can learn about this as we go along?"
I still thought no because you only get one chance and there was no learning as you go along in my head. I just started shooting, hoping and praying that the photos looked cool and that I wasn't screwing the whole thing up. It's actually how I felt the entire two years working on it. This is why I almost gave up on so many times. I managed to continue only because of how amazing the people of Kosair truly are and being so passionate about letting people know about this place.
I decided to follow around an amazing 10 year old boy named Noah Mancuso. I bonded immediately with him over discussions of music. He had such sophisticated taste for a ten year old. I decided he was the coolest 10 year old ever. Meeting them was what changed my original idea of a portrait series to follow them around. I thought the exhibit was going to open in October of that year and I figured this was enough time to do a photo story on him. Plus, I felt like it was important for people to see a story of what happens too. He was also hilarious. I immediately clicked with the family. The Mancuso's embraced my presence and the cause of doing the story. I loved being around that family, I cherished every moment. The moments like going to the ball park to watch Noah play out in Henry County, getting to know the community had to be favorite memories from 2010. It was such a blessing each moment of normalcy I got to see Noah experience. I love that kid in a bigger than life size way. Spending 8 months taking part in witnessing his journey through cancer builds a relationship with your photo subject in ways I wasn't prepared for.
There are a lot regrets about shooting the story on Noah that I had to come to learn to forgive myself. I was 20 yrs old when I started working on it and as time went on, I kept thinking more and more what I wasn't doing right. I became so close to the family that it became harder for me to notice the important things, or figure out a way to shoot the story authentically without having affected the situation. I still stuck it out until his end of chemo party celebration but internally my heart was screaming for me to stop. There were I believe 4 children who I came to know at one point in time, even if the conversation we had was a handful of times, had passed away. It all continued to wear on me. I was reliving my experience again. And even so following someone around who is leading their own life and me merely taking pictures of it, you don't get to live your own. I was done with it, I couldn't take it. I took another semester off from school, decided I didn't want to be a photographer anymore, and thought hey I can be a nurse. Because despite all that pain I did relish in being able to be there for the families. However before that was to begin and go back to school I was going to have one more semester to blow off some steam and rage hard. Liz and I lost communication; I had pushed her far from being in my life. I had always had the impression that Liz was not just bossy but judgmental and so I wanted nothing to do with her being in my life.
I started binge drinking every night of the week once I turned 21 in September of that year, the car I bought in May of 2010 was now instead of being used to work on the project or see Noah was now spent riding my car 20 minutes from my parents house to the opposite side of town to hit the bars. It's amazing how being drunk makes everything seem OK. I was waking up in my car during freezing weather with the spare blanket I kept in my car because I knew every time I went out drinking I was going to be too drunk to drive. I'd wake up in places that I didn't know where I was with instructions on how to get back to my car. I even woke up to find I was being taken advantage of. Inventing things with drinking buddies known as 'Black out Tuesdays' where you literally drink until you blackout. Not to mention the difficult task of getting kicked out of bars for being too drunk. That car I bought got wrecked because I was driving home from a friend's house in an ice storm at 5am the weekend before school started, just being plain reckless, I wanted to go out one last time before school started. It's ironic that the reason the roads were so bad was because I was waiting around until I sobered up.
Interestingly enough I started to bring my camera with me during this time and documented my life. When I started doing that I grew to shoot what I personally liked. Why the hell should I care whether these photos are up to par with standards of others if I don't want to be a professional? My personal style of shooting actually grew the most in that time.
I say all of this not because I'm at all proud, but because it was the reality for the 2nd semester I took off from school. The reality of how incredibly lost I was, the reality of what giving up looks like. And during this time I slowly started to forget to take the medication I'm prescribed to treat bi-polar disorder on a regular basis, which makes it ineffective. I didn't understand the seriousness of needing to take care of myself, nor did I understand how key taking my medication was in order to do this. And alcohol abuse is a very common side effect.
These days I am very adamant about remembering to take it every day, knowing the consequences of doing otherwise. Just a year ago, I was completely clueless. Photo had also defined my life and was the only thing I had ever wanted, and what was I to do without it? And who the hell do I deserve to be in life if I can't complete that project? What kind of person like me even deserves to be a part of these kids' lives? I just stopped caring, I hated myself.
I did what I did before, party like there was no tomorrow. However this time it wasn't partying; it was numbing every bit of heartache I didn't want to deal with. I'd check in with Emily via email telling her I hadn't forgot about the project, that I was just taking a break but I honestly didn't think it was going to happen. I would say it would be finished but never actually did anything in that time.
Frankly by December my depression became so severe that I didn't even want there to be a tomorrow. My Dad finally confronted me about my behavior, asked me if I was taking my medication. I said, no. He asked why. I said, I don't know. He said, OK good answer. He finally said that if I was going to be a party girl then I'd have to start paying rent, that there would be no point of taking out all of these student loans to get an education if I was just going to continue to party.
It's interesting, I threw any notion of religion or faith out the window when I was sick. Abandoned all thoughts of prayers and devotion, I knew no amount of praying was going to take it away. Instead I started asking questions. The main one being, why in the world did I survive? Subconsciously I refused any sort of faith until I would find the answer.
I came close to dieing a couple of different times, I didn't even need the transplant. Why did I make it through and my friends didn't?
I finally found it when I returned to Kosair and stayed with Lizzie. I felt God for the first time in my life. Everything that happened in my life to not only make being present possible but also prepared to carry the burden of pain in exchange of friendship, it all just seemed meant to be. It made me see and trust that everything happens for a reason. Knowing that is where I found faith.
Upon my trudge back to reality I ran to different nurses and staff members I respected and trusted who understood me and what I was going through and asked for advice. One of the first conversations was with my former nurse who no longer worked on 7 west but still worked at Kosair. Every once in a while we'd have lunch when I started going back to school. JCTC is two blocks away from Kosair Children's Hospital. One afternoon I just kept saying how I, "didn't care". The sadness of my voice was practically dripping from my mouth. She just looks at me curiously concerned and says, "Are you taking anything for that?" See the thing is that it's not uncommon for patients and staff members who work there to be put on anti-depressants. She continued on with how she understood about how hard it is to be up there, after all she doesn't work on that unit anymore for the same reason. After a while most people can't take the sadness that does still happen up there. I think that's also why I'm not ashamed to say I take medication to help keep my life together.
I just poured my heart out to her for an hour and a half, telling every detail of what was going on. About how miserable I was, she listened and listened. Then talked and talked and advised and encouraged. I later wrote her a letter about sincerely taking care of myself and thanking her for that time she took to help. I'll never forget the response back when I asked her about how bad things seemed to her, "Well, honestly things sounded not great. You didn't really appear to care if you lived or died that day. You were consumed by drinking... It appeared that you were just okay living in a cardboard box. You also didn't give yourself any credit when it came to your potential in regards to school and your photography. So I am glad to hear that you are much more reasonable and logical now. Thank goodness for medications--you need to take care of yourself. Be all that you can be--you have amazing potential and also are on the same wavelength as a very needing population. You can and I am sure will make a huge difference in the lives of others. Keep up the good work!!"
I share this just to show how strong the bonds between me and the people who used to take care of me are. It was this support on such a personal level that kept me coming back to the commitment I made. Emily really went out on a limb and trusted this would all come together. She was there in the same way. If I was going through something, and a lot of times it'd be issue outside of the project or was sad about something or even mad, she would sit and listen before each shooting day that I needed it. Then pull me back and say, "Alright, now let's get to work". As I look back on this support, there was no way the project would have happened. There would have been no motivation, because I was so young when I started it. I needed support not in shooting pictures, I can do that, but I needed help dealing with how projects affect your personal life if you let it. As Abe Lincoln said, "I am success today because I had a friend that believed in me and I didn't have the heart to let them down".
It still took about 3 months before that to get my feet on the ground. To start taking school seriously and taking my life seriously again. I went to live with a friend for a month sleeping on his couch because I also couldn't stand living at home anymore. I started to search for a job out in the highlands that would be within a comfortable distance from home that I wouldn't need a car. I got a job and then I took the money I got from the wreck and my tax return money and put a down payment on an apt.
Liz and I finally communicated again after I wrote a blog post about the day I was diagnosed in honor of my 7 year anniversary and posted it on facebook. I came to find out she was not judgmental at all, just very concerned. She told me she was impressed by how well written and detailed it was. And then she asked, "So how's the project going?" I told her I had been brainstorming, which at that point was true. I started going back to Kosair at that point, meeting new families learning about their experience while goofing around during arts and crafts. We finally met for coffee to make an initial effort, before the countless effort she made on her own after I gave her the photos to edit the story from last year to send to the printer and have that set in stone.
I remember another conversation this time at Qdoba after we were done looking at photos and I was finishing my meal. I had just been fired from the job I got out in the highlands (a week after I signed the lease for my apartment). They told me there were too many little things I was doing wrong and the only reason they ignored them for 3 weeks because I had been working so hard. And so they let me go.
I was so fed up with loosing another job because I wasn't cut out for it and in desperation to do something I was at least decent at and get paid for I said, "Alright look I understand I am a HOT MESS right now, but what would it take for you to hire me." Her response, "Well is this like you do normally saying you want to get better then you do for a little bit and then you go back to your old ways and then get better. And continuing this cycle of behavior you have. And if it isn't then I'm not saying it's impossible but you've got a lot of work to do. For one, you have to keep a job for a year. Stop swearing you sound stupid when you do and I sound stupid when I do. You have to make the effort to dress more together, I'm not saying you have to J. Crew it up but you should at least appear to be clean. And you have to learn how to put the people you are shooting first above everything else. Basically you need to grow up and act like an adult."
I didn't necessarily start to change to get a job with Lizzie Loo photography, I changed because I wanted to start doing things right for once in my life. I knew that doing all of those things would help keep me at a job. I was also scared for my life. I remembered that conversation Brian and I had the night before he left WKU.
I was at the brink where I could either step left to safety or step right and go over the edge. I had always considered myself self-destructive but this time the reality of it and the consequence for doing so was frightening.
It took me a few more weeks to actually let it all sink in and that's when I started to finally make big, big, big changes. I realized I had to stop dealing with life at the bottom of a bottle, I couldn't continue to work on this project and have it be successful otherwise. There are only so many times you can grab a bottle of rum to make yourself feel better about a child dying. I mean I came to do a project knowing that this is what happens, and I had to learn to cope with it. Not just that, but those kids who are there look up to me in ways that I was immaturely unaware of. They noticed when I wasn't there.
Liz invited me to church with her on Easter and so I agreed. Partly the reason why I agreed to go to Church with Liz was because I was desperate to try anything that was different from what I was doing. I found some sort of solace in the time spent there. A desire and compulsion to do better for myself came about, a calming feeling that everything was going to be OK. And this Church, The Avenue, was nothing like I had experienced with a church before. They encourage before any denomination to follow Christ. The practices of his life and teaching love and compassion. Teaching forgiveness, which I needed for myself. It was just such a free spirited approach to worship, and if you've ever met me you know free-spirit is the right approach I need. I work on Sundays now and the time to go doesn't fit in with my schedule but going there was in effort to do something different. And something different worked for me.
I finally decided to stop drinking bout three church visits later and really started to reflect on my life and try to grow. Trying to look at my life and see what went wrong and why it went wrong. I had to figure out why I wasn't succeeding, because every time I had taken a step in the previous 5 months I fell on my face. I found another job about two weeks after I decided to quit drinking. I am so thankful that Dittos gave me a chance to grow as a server and employee. And I spent the summer of 2011 "in sobriety", completely focusing on myself and working on myself, learning about myself. No dating either. Learning about what MY part was in my problems and resentments in life and then finding a solution. It was a key part of what I learned in sobriety, to always take inventory of my own actions. That was what helped me the most I think.
I'm no longer "in sobriety" but I make much better decisions these days when it comes to my personal health and keeping commitments. I still have the same job, and now I'm on my 3rd semester of school and have almost raised my GPA a letter grade from when I was at WKU. In the remaining time of 2011 up until October I set aside every Wednesday or at least just about every Wednesday afternoon to volunteer and to take pictures. There were times when I was shooting the portraits where I felt as if they were awesome and then others I was like, WTH am I doing. Nonetheless I continued to work on it and Emily continued to encourage me and introduce me to families. I'll be honest at times I did not want to be there. But I was going to finish this and I was going to do the best I could.
Not just that, but even when I was frustrated there would be something a child would do that was so endearing, so joyful and funny that I couldn't help but smile. Something so frustrating as a child who was only willing to pose for six photos before she absolutely refused to take pictures. I'd take a moment, step outside and cool off before coming back in. I'd be greeted by the same little girl jumping in my arms, and nuzzling her cute tiny bald head into my neck and telling me she loved me. How could I stay mad? While I didn't get to take as many pictures of her as I wanted, I spent the rest of the afternoon helping do something she wanted to do, painting.
I'd have to constantly remind myself to have patience. Working with children takes a lot of patience. See as the baby of my family I never grew up having younger kids look up to me. So being around a child as an adult I had to learn that I need to be a good role model for them. That by choosing to volunteer my time and being a part of their lives I have an obligation to them as an adult to be a good influence in their lives. And if you are unwilling to do otherwise, then you really don't deserve to be around them.
Liz also taught me that it didn't matter how tired you are or how much you don't want to do something because you're tired, you have to work through it. It was frustrating, my equipment was starting to crap out because I didn't/don't have funds to up keep my equipment as this was all done out of charity for awareness. I made a commitment though, not just to any place but to Kosair Children's Hospital, a place where I would advocate for and donate a million dollars every year if I could. I can't articulate in words how much the support I received as a patient meant in my life. How genuine and sincere my doctors were when I was in treatment. When I deeply reflect on it, it brings tears to my eyes. Cancer would not have been a gift without the support Kosair Children's Hospital gave me. They believed in me and I didn't have the heart to let them down. That's honestly the main drive that kept me going.
Otherwise, I was just a photographer running around like a chicken with their head cut off. I had no help really for the most part from other photographers. I'd get critiques here and there but I never sent it to anyone. I couldn't keep a job. I was 20 and 21 years old working on the project while still trying to lead the typical social life people my age do.
So many of them were so honest about how concerned they were for me and so many of them helped me carry on. Each person providing me with different tools that I will continue to use in future projects. I'm going to take time in my remaining years of college shooting stories and hopefully learning to shoot more story telling pictures. And hopefully learning from the pitfalls and mistakes I made this time to not repeat them.
On the day of the opening exhibit there were estimated to be over a 100 people who attended. I know the majority of them were people I have gotten to know and love from the cancer community. And all of them helped shape and influence my life in ways that I'm sure they're aware of.
I did get through it and I did finish it.
And when I say it's practically a miracle I finished it, I mean that. If it wasn't for me being a former patient and having such strong bonds with everyone involved with that project (Emily, Liz, the nurses, Shannon the Chaplin, the parents and the kids who needed me just as much as I needed them) there would have been no way a very young, stereotypical "twenty-something," such as me would've had a two year project completed. My love for Kosair Children's Hospital spans into the depths of the ocean and sears through my veins as it pumps from my heart.
If it wasn't for me finally growing up or at least starting to make solid efforts to do so, finding enough clarity to bring me back to what cancer taught me, it wouldn't have been a success. As Liz writes at the bottom of her much shorter blog post, "It saved my life, made me believe I could do anything I wanted to. Made me care about my future and then made me not worry about the future because I have ultimately no control. And made me appreciate being alive."
Redefining Normal was an epic roller coaster adventure just as chemotherapy was. I rearranged my entire life around it, and I wouldn't want to be anywhere else in my life than where I am. I share all of this with you all to speak for myself in the most honest way possible. Admit my faults and to hopefully help those to understand me better. I am by no means perfect. I am not a poster child for cancer survivors nor do I think it's possible for one to exist. I've fallen on my face more times than I can count. Liz is right when she says my life hasn't been easy, but I love it.
And I share such personal moments as an honest reflection of my life in what it took to make it happen and where I need to say thanks. I also think there are a lot of things from the past mistakes I made that hopefully others can learn from. I am who I am, and I feel like if people are going to throw around that hero word you better know everything.
My love for photography happened by shooting on a digital camera my junior year of high school. This was when my curiosity began to grow for pressing the shutter button. I started to practice using manual mode on new digital cameras that were bought for the yearbook staff. I read books and surfed the web in order to learn about what f-stops, aperture, ISO and shutter speeds meant. All I wanted to do was be able to take indoor sports photos of volleyball and dark outside football photos. I've never taken film class, or taken a photo on a film camera. What can I say, I like the instant gratification of seeing a photo and learning from it immediately. I never took an art class in high school. All I did was shoot and look for where the action was. I didn't know anything about composition, I just liked being able to capture moments. Turns out when I came to WKU that's a huge part of photojournalism. I later learned about the art of composing images and learning how to make them beautiful. I spent only three semesters at WKU before I started the project. I was only planning on taking one semester off, it took a year to find the space and after we found it we had to wait another year for the space to open up.
I have a long way to go in terms of where I want to be as a photographer, and this was just the first of many projects I want to do in my life.
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