I've noticed a pattern. Everytime something really great and amazing happens, I promise myself I'll post or make a video about it. Then a week goes by, and something devastating happens, and I think it's silly to post about the good thing...because..what does this all mean?
Good News? Last weekend I went to my first yoga class in years. (See my first post, "yoga" to read about how that went.) To my surprise in delight, I LOVED it. I felt my heart sing as I glided into the motions of Barre, or "Ballet" yoga, with pieces of my childhood coming back to me. I watched my body move in the mirror. I noted how much easier it was. I felt myself about to focus, concentrate, hold poses. Two days later, I went to yet another class. Something I have not done in 9 years. And on the way home..something happened.
It felt like a spring day and I just completed a second class with little pain. I rolled my car window down, breathed in the air, turned up the music, and started my drive home. It was then that I felt it. I felt well. Yes, well. It came over me so quickly I didn't feel it approaching. I could breathe. Nothing hurt. I felt light. My heart beat in a different way. My mind was clear. I felt like my healthiest days in high school. Health is in there. It exists.
Fast forward to one week later. I was on my work phone with the IT department when this sudden pain hit me. Right ovary. Pelvis. I had to hang up the phone, and I collapsed to the floor. I was nearly screaming in pain, and nothing would give me relief. I knew something was wrong. I was sinking into my nightmare, but part of me didn't want to believe it. How could this happen after such a high last week? I made it to my Dr's office, with the help of my mom. They walked me back to that same room, the ultrasound room, the room that always gives me results I don't want.
And, there is was. The doctor pulled up the picture of my right ovary on the screen, and even his face dropped. He pointed to it, and tried to move it. But it didn't move. He showed me how my left ovary moved, but my right didn't. Slowly he said.."You see this? It can't move. It's covered in adhesions and scar tissue. That's the pulling you feel. And it's full of blood. It's frozen. That's the pain you feel."
I stared at the screen. I was numb. I literally did not feel a thing. You'd think I'd feel like I was betrayed by my ovary, but really, I felt like I betrayed it myself.
"It's stage 4 endometriosis, Laura." I heard the doctor say in the background.
At some point he left the room. I slipped my clothes back on and stared at the screen. I couldn't cry. Some things are so sad that you can't form tears. I don't think the body can register that kind of sadness. I looked up at that dark ovary. And I told it I was sorry. "I"m sorry I failed you", I thought.
As I walked into the next room, the room where they would inevitably tell me about the next step, the surgeries, the hormonal treatments, the past two years of hard work flashed in front of my eyes. Diet change. Sacrifice. Supplements. Detoxes and homeopathic treatments that practically made me feel like I was going through an exorcism.
I sat there. They gave me pamphlets. Told me I need surgery. Told me if I want a baby I should have one soon. Told me if I ever want one I should have the surgery now. I nodded and walked out. Numb.
I let myself cry for the rest of the afternoon. I let it sink it and come over me. I let myself feel sad, disappointed, angry.
I don't know why this is happening. But, I do know one thing.
It will go away. Yes, it will. I cured my cervical cancer and I will cure this. I will. All I need is a plan. And I will make a plan.
In the meantime, I will give myself a few days to feel sad. To allow the loneliness of this disease to wash over me. I'll let it swallow me today. I'll look outside and feel like I'm not a part of the living world. I will cry and maybe scream.
Then, I will say to my body, "what do you need?"
I have heard that nothing every truly goes away until it teaches us what we need to know.
Teach me. Teach me, so I never have to see you again. Teach me, so I can take you away from someone else too.
Sunday, February 24, 2013
It is my birthday. Okay, well it is my birthday tomorrow, but tomorrow is Monday, and tomorrow is a working day, and I had this epiphany today. So, today this post is being written.
Birthday's are hard. They're hard for everyone, but particularly hard for those who are battling an illness. Each year is a mark of what has and has not improved, and what has and has not changed. We measure ourselves against other peoples' progress (let's face it, we do), and against our own progress in ways we shouldn't measure. Because truly, those things can't be measured in the ways we think they can.
I could spend today thinking about all the things I should have now that I'm 28. I could spend today thinking about everything I should have accomplished, should feel, should know, should possess. I should be healthier by now, especially after how hard I work at my health. I should be married. I should have a child or at least be planning for one. I should have more money. I should be farther along in my payments towards my medical bills. Should. Should.
But, rather than talking about what I should have (which, I have been doing all week. Okay, all month.) I will talk about what I hope I never lose- those things I have acquired on this journey that I hope stay with me forever.
I hope I always have my desperate will to live. Yes, there are days when I want to give up- days where getting out of bed is so incredibly painful I can't believe I'm actually not dead. There are nights I cry myself to sleep, curled in a ball, praying for relief from the pain. But there is always that desperation. That loud voice inside that screams to keep going- that throws the doctor a look when they tell me there is nothing more they can do, that voice and that face that looked that doctor who told me I'd never finish school in the face and said, "watch me." I hope I keep that stubborn pride. I hope I keep that desperation, that stubborn, unrelenting fight to keep going, to see the world and experience, feel it and taste it. I hope that voice never quiets down.
I hope I always feel excited at the smallest thing, like a successful grocery trip. I hope, on a day when I manage to grocery shop, cook, and curl my hair, I continue to twirl around and dance in happiness over my success. I hope I always notice when the weather changes slightly, and when the cardinal in the tree in my front yard comes to say hello. I hope the smallest things always remain the biggest things.
I hope that I always dream dreams that are bigger than most would imagine. I hope I continue to push myself to move farther. I hope I continue to create ridiculous goals in my mind (PhD? My own therapy practice?) that make people look at me with bug eyes and shake their heads. I hope I continue to have ridiculous ideas that I write down excitedly, and smile to myself when I think about them on a dark day.
I hope that part of me that pushes myself to the brink never shuts down. I hope I continue to push myself, sometimes way too far. I hope that on the days when I did push myself too far, where I cry and I pace or I fall to the ground, I still do find that moment to forgive myself and congratulate myself for trying.
I hope I can learn to forgive myself more.
I hope that I always believe I will be well one day. Yes, there are days when I question it. There are days when I question if I should reside myself to always feeling sick in some way, to not having the level of strength I wish for. I hope I always come back to center, to that stubborn desperation that screams, "yes you will get better, you will have everything you want."
I hope that my intuition stays with me, even though on some days it is difficult to endure. I hope that my ridiculous way of "knowing" remains. I hope I can still sit in a room with people and pick up on their pain, so I may relieve it in some small way.
I hope, that in the face of overwhelming odds that are still thrown at me, I continue to prove medical professionals wrong. I hope along the way I can teach them something. I hope, one day, what they learn saves someone else.
And, believe it or not, I hope a little piece of this always stays with me. I hope I never forget my worst days. I hope I never forget the desperation, the pain, and the overwhelming sadness. I hope that when people sit in a room with me, they can still tell, from my face, my body language, my presence, that I know pain, so they may feel comfortable enough to share their pain and their story with me. I hope I don't forget my story, so I may always tell it, and so people may feel they can tell me theirs.
And, of course, I hope you find peace. And health. And happiness. And everything you have ever dreamed of..and so much more.
Saturday, April 28, 2012
With so many changes happening in my life right now, and so many unknowns, I keep this quote in my purse, on a crumbled piece of paper.
"The only thing standing between you and your goal is the bullshit story you keep telling yourself as to why you can't achieve it."
The story you tell yourself is the life you create. Make your story an empowering one.
"The only thing standing between you and your goal is the bullshit story you keep telling yourself as to why you can't achieve it."
The story you tell yourself is the life you create. Make your story an empowering one.
Wednesday, April 18, 2012
I'm having a hard time.
A hard, hard, beat the steering wheel with my fists, pace around my room, cry in the shower, doom-thinking hard time.
I don't know where I'm going with this post. I do not have a set goal. I did have set goals, originally. And then, especially, when I began to improve, my goal was to share how I was doing so. I began that when I posted about my vegan diet-which, is still helping, yes. However, what was a good, solid few months turned into a downward spiral, and I can't see the way out right now.
I'm kind of tired of statements such as "life isn't fair", and "this too shall pass." Alright, well it kind of sucks right now and I don't care if it will pass. In this very moment, I have things to do, I have a life to live, and I am tired of being plagued with this.
Tired. Tired is not even the word. I'm kind of losing my mind. No, no, I am definitely losing my mind. I don't know what it is about when I hit a difficult flare, but I tend to go into this "doom thinking" as I call it. Suddenly, the dreams and goals I had for myself seem so far away. I gasp for breathe as I cry over the thought of not being a therapist, a mommy, all of the things I've dreamed of.
I belong with people. I'm kind of good with people. It's one of the few things I'm good at. I don't know why this is happening. I don't know why, a month before graduation, something I have been working for for 3 years, I have hit an earth shattering flare. I feel trapped. I don't feel safe. I feel angry.
I had to speak to my supervisor today about the state of my health, as I missed several days of work last week and had to leave early today. She was understanding and kind, however there is one statement that she made that I can't quite shake. She told me that as a counselor, and as a woman, she had this intuition that there was "something else" going on with me, such as "a bad relationship or a chronic, underlying depression." I paused, partly shocked, partly offended, partly half dead anyway. I took it in. Then, it hit me.
"When I first became ill, many doctors did not know what was wrong with me. Two, specifically, told me I would not live through this. Every time I become ill, with any similar symptoms to that difficult time in my life, I remember their words, and I am afraid I will go back there, I am afraid I will die."
Yes, I said this to my boss.
Rather than regret that moment, I am proud of it. Don't let anyone tell you the pain inside you is from some deep, underlying depression. Don't let anyone make your pain out to be less than what it is. This is your body. This is your life. I own my words, I own my feelings, and I own my experience.
Today was quite a revelation. One I still have not completely wrapped my head around. But what I do know is this- I am stronger than I used to be. In the past, I would have taken her statement and let it be. Today, I defended myself. I told my story. I was vulnerable, I was open, I was..human. Completely, painfully, torturously human.
We all have a story. Don't let anyone dictate yours, or question what is behind your feelings. The world needs more people like you to share your story, so people know they are not alone. You are not alone. Wear your war story. Nothing good can come of this if it's never told.
Monday, January 23, 2012
I feel like I'm living more in my memories than I am in the present.
Something has happened to me in the past few years where I am finding it more difficult to live in the present. (Hm, I wonder what that something could be?)
I'm in the middle of a homeopathic treatment right now that, before it makes me better, must first make me worse. The ironic part of this (let's face it..as if the idea of getting worse before getting better isn't ironic enough) is that in my last post I spoke about the healing powers of the body and to have faith in its capabilities. Oh, do I need some faith. I will say this- I do, with all of my heart, believe in the amazing capabilities of the human body, and I truly do believe every pain I feel is my body's attempt to heal.
..but, you know what?
Reliving my worst hell over and over again is no picnic in the park. More like a trip to crazy land, where I pace around my room and cry, shake and sweat, call my Doctor, and text friends (Shannon and Candice in particular-hi girls) to ask them to remind me that I'm not actually dying.
At a time when I should be in the midst of creating the greatest memories of my life, I find myself living in the past. Last Sunday, Dave and I spent time with two of our friends who we have both known for years. I have been friends with both of them since I was a teenager-Meghan, since we were 12 and met figure skating, and Teddy, who I've known since I was 16, when he was my high school boyfriend's best friend. Oh, and now they're dating each other. Told you, my life is weird.
We were at Teddy's house, the boys watching the football game and Meghan and I pretending we cared, and Teddy, being the great host he is, continually offered me food and drinks..none of which I could eat. I felt like an alien imposter as I watched them whiz around the kitchen, heating up leftovers, popping popcorn, cracking open beers-none of which I have seen in months-some of these foods, in over a year. Nothing makes you feel more like a sick person than watching the normal people behave in their natural habitat, crunching on popcorn and drinking beer like it's the most normal thing in the world.
Well, I guess to them it is.
Seeing them sit there, attempting to pass me food which I had to politely decline repeatedly, made my heart ache. Not for the food, but for the life I left behind. A life where reaching for a favorite snack wouldn't always give me a stomachache, a life where every move wasn't calculated and considered. I looked at Meghan, smiling, talking, watching her sweet daughter play on the floor next to us, and I wondered when I got left behind.
Meghan and I, we skated together, literally side be side during practice. We'd spin around together, measuring our success by how well each of us mastered each move, knowing what we'd need to practice more based on who aced the spin or jump first. We entered college at the same time, continued to meet up and skate together on weekends, and then..the floor fell out beneath me, and it's kind of a blur how it all ended. I feel like her life, and the lives of those around me, have moved forward, forward, forward, while mine has crept forward, sometimes been thrown back, and I have crawled again, sometimes just to get back to the place I was in a few months before. I feel like while everyone around me is making memories, I am busy surviving.
I find myself each Christmas or birthday saying to myself "next year will be better, I will feel better next year". I was flaring so badly this Sunday, one week after spending time with friends, while Dave was over I was just completely losing my marbles. I was pacing in pain, crying as I tried to simply breathe, while I eeked out the words "just leave, just leave me here, please go live your life." I cried while I told him that I didn't think it would ever be over for me, that my life was standing still, asking him to please be friends with me when I'm still this sick years from now. He just looked at me, and I could see sadness in his face. He took a moment, the pause he took taking so long I managed to look up at him, when he said, "But, I believe in you."
Belief. Hope. It always comes back to this. And today, belief is someone believing in me. Maybe my memory isn't watching a football game with friends this Sunday, but it is of someone believing in me, wholeheartedly, with unwavering faith. And that is a memory that not just anyone can make. That is something created from hard work, from a life that has been built and worked for, from challenges coming forward and facing them head on. Maybe I didn't have a rockin night out with friends, but I do have someone-a few people, actually, that believe in me, and that is a memory to recall on the hardest of days. Maybe there's a lesson here..
The memories that matter in life are not wild nights out, but of the relationships you have created with people. The memories that you recall when you are old are of the love you share with those who are close with you-those tiny moments between just the two of you when you are both truly in a moment together, whether that is the moment I hear Shannon's voice on the phone, knowing she is completely with me in my pain, or the moment I see Dave's face change, knowing he actually wants to be in my presence during this dark hour, that I will recall when I am looking back on my life.
I can choose to push aside these moments as things that occurred during my "sick days", or I can take them for what they are- true care, sick day or not so sick day. Look for the love in each moment, look for the hope and take time to look at the faces of those who believe in you. The rest is just details.
Monday, January 9, 2012
Nothing about this journey has been easy. In fact, if I were to pick a word to describe this process, "easy" would not be it. But, I would pick one of the words I already used- a "journey", a "process", and on some days "a trip to hell and back" (more than one word, I realize) would be a more fitting description. The words "journey" and "process" imply that this is something with a beginning and end. These words don't indicate when the journey will end and begin, how long it will take, how many setbacks there may be, and how many times one might give up before reaching their destination. Just- beginning, and end.
It can be extremely difficult to think of this process as something that has an end to it-especially for those of us who have a chronic illness and have the odds stacked against us. I'm not a Doctor of Medicine, or some kind of guru, but I am a person who has experience with chronic illness-I'd like at this point to consider myself a professional in regards to "Laura's Chronic Disease" (can I put that on my resume?). I may not have the credentials to write myself a Rx that can be legally filled at a regular pharmacy, but I've been in the thick of it- I've been brought to my knees from pain, cried enough tears I've soaked my pillow, and, in the past year, have completely changed my diet and supplements (no more Rx medications!! None. Zero) by doing my research, listening to my body, and knowing myself. Remember- YOU have more power than your Medical Doctor. That's right. You know your body. Nothing you report is strange, nothing. A medication bothering your stomach, a food making you dizzy, feeling tired after a full nights sleep-these things all have a reason tied to them, and the reason is not that you are crazy.
Your body is an amazing, complex mechanism. Although scientists and doctors have tried to understand it, there are some things that go on within the human body that just cannot be explained. The body's healing abilities and the complex process that goes into this- cells, plasma, oxygen, enzymes, minerals- is yet to be fully explained and understood. The human body was designed to heal itself. It will do anything in its power to do so in order to keep you happy and balanced. Sometimes, in its attempt to fix itself, we can feel ill. This is not because our body is not working right, or because it is disagreeable- it's because it is trying everything in its power to fix us, but sometimes does not have everything it needs to do so. No matter the disease- chronic inflammatory, chronic infection, cancer-the body is doing it's best to keep us balanced and is pulling from every which way to do so. It is our job to feed it what it needs (healthy foods with essential vitamins and minerals) and to hydrate with clean water so it can pull from this fuel to fight off its invaders (disease, toxins, allergens, infection). I realize this sounds simple, and I don't mean to downplay any of our diseases-they are real, debilitating, and some of them have been with us for the majority of our lives-but, although these diseases are complex, the reason behind them truly is simple- the body is trying, with all of its might, to heal you.
Think of it this way- when you break a bone, it heals. Sure, you can put that part of your body in a cast to protect it, but even if you didn't the bone would heal. It is still not known how the body does this. So many different mechanisms and processes go into it, it just cannot be explained. We do not need to sit there and tell it to heal. We do not need to take medications. And we don't lie awake at night worried it won't heal. Because we know it will. The body will find the broken part and fix it. Sure, an individual can set it back into place, but the actual bone can only heal with the body's work.
Here is an excerpt from one of my favorite books, "Quantum Healing" by Deepak Chopra:
"You cannot step into the same river twice, because the river is constantly being changed by new water rushing in. The same holds true for the body. All of us are much more like a river than anything frozen in time and space. If you could see your body as it really is, you would never see it the same way twice. Ninety-eight percent of the atoms in your body were not there a year ago. The skeleton that seems so solid was not there three months ago. Your skin is new every month. You have a new stomach lining every four days, with the actual surface cells that contact food being renewed every five minutes.."
Whew! Sounds like a lot of work. If your body can do all that, who are we to say we cannot heal completely? Let's give this temple of ours a little more credit.
You have the power to heal. You. Your bones, your heart, your cells. They are all rooting for you. So am I. Know your power. Healing is not just an option-with the right tools and a whole lot of patience, healing is inevitable.
**For a jump start on how to help your body heal, consider my favorite documentaries: A Beautiful Truth, Food Matters, & Forks Over Knives. These will be discussed in my next post and video, along with recipe suggestions and favorite foods and supplements.
A Beautiful Truth-
Sunday, January 1, 2012
It's a new year, friends.
I have been meaning to post for a while, it has been quite a year. Due to diet changes and supplements, I have truly experienced some "good" days this year. And by good, I mean truly amazing, pain free days..days where I would look around me and think "This is it, this is what life can be. What a miraculous place this world can be." Tears would immediately form in my eyes. Yes, even on healthy days, I am still the girl who cries in public places.
This year brought many surprises. I met my best chronically ill friend (Shannon) in person, and worked for 7 months as a counselor at my clinical internship site. I am becoming a therapist, it is actually happening. It is very real. During that time, I had extreme ups and downs. Days where I felt so well I danced around my living room, and days where I felt so ill, I shook as I cried myself to sleep.
I still live in two worlds, but they look a bit different to me now. The ever-so-far away "normal" world was with me at times, but sick world would linger in the distance..like a dark, far away cloud. You can see it there, and you wonder if it will get close enough to touch you. You wonder if it will pass over without a storm, or if it will catch up to you and pour its rain and roaring thunder over you. Normal world, as beautiful as it is, doesn't quite look like how I remembered it. And, I don't think it will. I'm too aware of the sadness in the world now. I'm too aware of pain. But, I appreciate this knowledge. In fact, this knowledge may be what I was meant to see.
Right now, I'm in a sick period. And..I'm feeling a little hopeless. No matter how many little post it notes I leave to myself to remind me what it's like to feel well, to remind myself it's possible and that flares pass, I cannot believe it, even when I stare at the note and picture myself when I wrote it.
So today, since I cannot remember what it's like to feel well, I will choose to remember what changes this illness brought to my life and ways it has worked for me. Over the course of 7 months, I had several clients. Many with depression and anxiety, and some even with illness. I did not tell any of them of my illness, of course-therapy is about them. But, something interesting happened..something that took my breath away:
I have a client, let's call her Kate*. **Kate is a college nursing student who has suffered from a back injury for a few years now. The pain can be so debilitating she at times has questioned if she can finish school. We spent many hours in my office discussing the difficulty this brings her, emotionally and physically. I wrote notes to her professors if she missed class, explaining she is trying her best-I asked for extensions on papers, I advocated for her needs. At the end of the semester, in December, Kate showed up to my office. She looked bright and was smiling. "I did it, I did it!", she exclaimed, with sheer excitement. She reached out to hug me, pulled me in and whispered, "You get me. You really get me." When she pulled away, she held my arms and said, "You know what it's like, don't you? I know you must. The way you looked at me, I could tell you heard what I was saying. What do you have?"
A few weeks ago I received an email from Kate. She had gotten her grades for the semester, and passed with flying colors. Kate stated that she could not have gotten through the semester without someone understanding her and advocating for her, and that what got her through her most painful days, was wanting to one day do what I was doing for her-understand and advocate for a patient in pain.
Your disease is not your destiny, friends. Make your pain your purpose.
Wishing you all a happy, HEALTHY 2012.
*Names will always be changed if speaking about a client
**I will only speak of clients who have granted me permission to mention them and their story, out of respect for confidentiality