Read an Excerpt
Chronic Resilience
10 Sanity-Saving Strategies for Women Coping with the Stress of Illness
By Danea Horn Red Wheel/Weiser, LLC
Copyright © 2013 Danea Horn
All rights reserved.
ISBN: 978-1-57324-594-4
CHAPTER 1
Take Ownership of Your Wellness
Why on earth would I want to own a body that is broken? One that has aches and pains, needs medication, ruins plans, and embarrasses me? I would never buy it from a store, order it from a catalog, try to replicate it on my own, or borrow it from someone else. Still, when I wake up in the morning my body is there, ready to be moved through my day, to surprise me at any moment, and to make plans of its own without consulting me. My body is wild, unpredictable, rough around the edges, a pain in the ass (sometimes literally), but it is mine. This is the point that we start from: living with something that we did not choose or approve of.
One moment you're standing on the shore, the next you're swept up by the tide to bob and sway in a churning sea. Control, the one thing so desperately wanted, is lost in the swells. You kick and tread to be cured and supported. Kick and tread to dictate the future. Kick and tread in search of the shore. And then the sea reminds you of the depths you're dealing with and that it's time for a new strategy.
The T Word
My husband Phillip and I moved to Portland, Oregon, in 2006. At that time, I was monitoring my kidney function through blood tests every six months, so I made sure to find a nephrologist (kidney specialist) soon after we settled in. During my first checkup, my new doctor mentioned that he wanted me to establish a relationship with a urologist (urinary tract specialist) because he would be "on the transplant team." Everything came to a halt as I wondered, did he really just say the T word? In relation to me? I could only see the back of the doctor's white lab coat when he said it; he was typing the urology referral into the computer. I don't think he realized that this was the first time I had heard the world "transplant" in regard to my kidney. Up until that point, I assumed that my health as a spry twenty-something would mature into my being a spry sixty-something grandma; but apparently I was mistaken. I asked for clarification, and he replied that my level of kidney function would not last for the rest of my life and someday I would need a transplant.
A flood of fear washed over me. My view of my health suddenly changed from "I keep an eye on my kidney and take a few meds" to "I'm sick." Sick equaled scared. I left the doctor's office and walked through the dim parking garage back to my car, a flickering orange light illuminating the tears running down my face. Sob after sob, my situation closed in on me. My mind went through crude calculations of how many years it would be before I'd need a transplant, and who in my circle of friends and family was going to be the "lucky" one to donate a kidney. Alone in your car is not a good place to pull yourself together. Facts get fuzzy between the seat and the steering wheel. There is no passenger there to offer reason or a "we'll get through this" touch. There's only you, worrying that things are about to get really, really bad.
I was afraid to eat after that appointment. I didn't know if the thief who had taken my kidney function was hidden in the extra piece of pizza I was known to swipe. What about the sugar in my lemonade? Or was coffee the culprit? How could something be happening in my body without my awareness or consent? I was supposed to be the guardian of my body, and somehow a burglar had slipped past me. I was determined to not let it happen again.
Up to this point in my life VACTERL had been a challenge, it had upset me and embarrassed me, but it wasn't anything I couldn't work around. There was just something extra dramatic about the idea that I would need someone else's organ put into my body to stay alive. That T word was making me tired and out of breath. I was confused and feeling victimized by my own body. In my angst, I sat and watched my power leave in the knapsack of the thief who had just changed my life.
Why Me?
Have you ever asked yourself, why me? Of all the people, and all the lifestyles, and all the everything, why me? You rack your brain for an answer: you think back to what you ate, what you stressed about, and all the snooze-alarm mornings when you only dreamt about the gym. You wonder if God is challenging you, and you question how strong you must be to face something so blatantly crappy.
"Why me?" has a thousand different answers. Philosophers, pastors, priests, revolutionaries, friends, even the random Facebook acquaintance all seem to have an opinion about why things come into our lives when they do and how. The theories run the gamut:
• "The Secret"—You attract your experiences based on your thoughts and feelings.
• "The Karma"—You are being punished.
• "The Guilt"—You are punishing yourself.
• "The Tough Love"—You are strong enough to handle it.
• "The Exorcist"—Disease is evil incarnate and has waged a war on your turf.
• "The Darwin"—It is just evolution, a random draw of the short straw.
• "The Hippie"—You are playing out an archetypal pattern to learn a lesson your soul needs.
• "The Mrs. Fields"—You are too stressed and ate too many cookies.
• "The Evangelical"—You do not have enough faith in God's healing power.
And the list goes on ...
Most of the popular answers to "why me?" are ridiculous attempts to pull back the curtain and reveal the wizard, with little aim to provide comfort or understanding. "Why me?" is a complex question—it shows our innate desire to figure life out. Behind that two-word question is a yearning to control. If I could just figure out "why me?" then maybe I could fix what is broken and make things go back to how they were before.
Most often, we look outside ourselves for answers. I have spent many an afternoon sitting on the floor of the self-help section at the local Barnes & Noble, searching for the answer to that "why" question. A title will jump out, and I will think, "That's it! This book will tell me why my life is messed up and how I can magically fix it." When I read The Power of Your Subconscious Mind by Joseph Murphy, I thought that repeating positive thoughts was going to be the cure. After Eckhart Tolle's The Power of Now, I thought, "Oh, that's it. I wasn't living in the now. Once I fully live in the now everything will be perfect." I studied metaphysics, Christianity, and Buddhism. I searched my psyche for feelings and thoughts that needed to be healed. I prayed to increase my faith. I began to see my health as a manifestation of being separated from God, a belief in "dis-ease" that was harming my body. I became frustrated with myself and with my inability to channel healing love as I watched my lab results get worse. My initial question of "why" became a merry-go-round of questioning everything I thought I knew to be true. And so it went, book after book, until I had a bookcase filled top to bottom with answers, none of which seemed to miraculously fix what I envisioned as broken.
Years after I began my quest, I was driving from Sacramento toward the Sierra Nevada Mountains on Interstate 80. The city's crowded cement and flashy billboards had just left my rearview mirror. I took a deep breath and let my chest sink into the seat as my hands dropped from ten and two to four and six. My mind wandered to the great thinkers that lined my bookshelf. So many of them talk about the idea that we are spiritual beings. To heal and be prosperous, we have to connect with the spiritual side of ourselves, the side that is perfect and complete.
The spiritual journey is described much like my drive. The ego is the city, with its fight to be something. The neon advertisements and cement attempt to build up the prosperous but end up crowding out true beauty. Outside the city, the expanse is vast and peaceful. It is naturally beautiful. The trees don't need to try to be anything because they already are everything. I wondered why I wasn't like the trees yet. I had been studying for so long to get out of the city and into the trees, and I was frustrated with myself. The question arose, "why am I still dealing with the same crap I've been dealing with for years?" Then, without books or seminars or websites or coaches or any guru, an answer came.
The idea was so simple and so obvious you'll probably laugh that I didn't realize this sooner. I realized that I am human, and all of the cells in my body let out a collective sigh of relief.
Being Human
You are born completely dependent. You need to be fed, changed, cleaned, burped, and carried around. Each year you get a bit more independent: you take your first step, you dress yourself in hot pink tights and a green jumper, you hold hands at recess, you learn algebra, you terrify your parents by learning to drive, and eventually you fly from the nest. The gradual grasping of self-reliance gives you the idea that you have control over your life.
Illness laughs at this notion of control. We don't control everything that happens within our bodies because, as I so groundbreakingly discovered, we're human. Part of being human is experiencing pain, loss, stress, and heartache. It is the journey we all take. Each page I turned in all those books was a search for how to get out of being human. I had been looking for a spell that would prevent me from having to live through the tough stuff. I was pushing hard against something that wasn't going to go away.
Ownership
Imagine with me that you have moved into a new house and the moving crew put your 150-pound dresser on the wrong side of the bedroom. You wanted it to the right of the window, and they placed it to the left. You think, "I'll just move it myself," and you lean into the dresser, but it doesn't budge. You turn around, dig your heels into the carpet, and try pushing with your back, but that doesn't work either. Then you walk to the other side and pull with all of your might. The dresser is still to the left of the window, but now you are sweating and out of breath. That is stress.
The tension you put against the dresser is similar to the tension you place against illness. Illness is in your life for a conglomeration of reasons, and you can push with your front and push with your back, but it is still something you have to face.
Once you realize that the dresser is staying put, you decide to decorate around it. You no longer have to shove the dresser somewhere else. Tension is gone, and you can move on. The challenge is to figure out how to piece your life together around your diagnosis. The first step is to stop pushing so dang hard.
We push because illness just showed up. It feels like a misplaced tragedy from someone else's life. Like a bad Christmas gift, it doesn't match anything you own. It is unfair that you have to take responsibility for something you didn't choose. Yet, the circumstances of your life are yours to own. No matter what your diagnosis, you've got to go all in, with both feet, completely submerged.
It is important to claim ownership of your health because you already own it. You did not decide to get sick, but you live with your body every day. You are the one who has the intestines that like to play tricks, and you read blog after blog to learn how others shoot back apple cider vinegar and eat macrobiotics.
If you do not take ownership of your health, I can assure you that someone or something else will. Your emotions and thoughts will bounce around like ping-pong balls ricocheting off every opinion, study, test result, article, and sideways look you receive. The especially juicy, dramatic, and horrific thoughts tend to be the ones that we ruminate on. They also zap energy and impede healing. Not cool.
Becoming ill is a threat—to our lifestyle, and maybe even to our existence. When we feel threatened, it can be easy to cope by giving life the silent treatment. But, responsibility is paramount to every healing process. It is up to you to take on your wellness and live life as fully as possible. There is no person, book, seminar, or tweeted quote that can do this for you. You are being called to own your life.
The day I heard "transplant" for the first time, I wasn't only processing the idea of needing a kidney transplant, which would naturally involve some tears—I was feeding the drama of it. I was letting one word dictate how I was going to feel, mentally and physically. It took me a while to wake up to what I was doing. When my eyes were open, I saw that nothing had changed with my health except hearing the T word. Not my diet, not my exercise patterns. Nothing. Each time I felt out of breath or tired or in pain, I reminded myself of the health I still had and remembered the idea of needing a transplant was, at that point in my life, just one possibility for my future.
It is up to you to take on your wellness and live life as fully as possible. There is no person, book, seminar, or tweeted quote that can do this for you.
A few more months passed, my fatigue decreased, and I was less scared of my own organs. When I was back at that same doctor's office for my next checkup, he changed his opinion and said, "who knows what's going to happen; your lab results have been stable every time I've seen you." I had a brief moment of triumph. I had been resilient. I had pulled up my big girl pants and pulled myself together. Problem solved! Or so I thought.
Ownership Is Not ...
There is an important distinction to make here. Ownership does not mean that you "own" your disease. If you "own" your illness that probably means it has become your identity. When you begin to identify yourself as "a cancer patient" or say you "suffer from chronic fatigue" or "are a sick person with lupus," you give a level of importance to the disease—one it does not deserve.
It is completely understandable why we do this. As a society we connect through shared experiences of pain. It's what we gab about with our girlfriends, it's what gets us out of work, and let's face it, when you want your hubby to make dinner, a bit of whining about your aching back never hurt. Illness can cause love and attention to come your way that was otherwise hard to find. Identifying in this way and soaking in the benefits of being ill only keeps us in that pattern. Be honest with yourself about your relationship with your health and body. If you feel you have become entrenched in identifying with your diagnosis, seeing a therapist can help you change that pattern. We will discuss various healing professions in chapter 6.
Ownership is not merely acceptance. It is much bigger than that. Pretend you are on vacation in what is supposed to be gorgeous, sunny San Diego. Unfortunately, a wayward storm has come through, and now everything is all drippy. You can accept that your beach plans have been rained out and spend all weekend sulking in your hotel room watching reruns of How I Met Your Mother, or you can change your plans. Visit some of the amazing museums and restaurants in the city. Grab an umbrella and walk through Balboa Park anyway. Likewise, you can accept that you have been diagnosed with an illness and spend all day, every day in bed, or you can use that as a cue to adjust your plans. With acceptance comes the possibility of giving in and giving up. You may not have resistance to your present reality, but there is no motivation to take action, either. People can let years go by like this, accepting, but also completely disengaged from, life, as if their illness has given them a Get Out of Life Free card.
Ownership Is ...
What exactly is ownership? How do you take ownership?
Ownership is a decision to take responsibility for your life and your healing. It is that simple and that complex all at the same time. Make a decision to be open to the challenges that are already in your life. Going from clenched fist to open palm releases a lot of tension. Doing that frames every pain and annoyance in a way that makes it easier to deal with. Illness can be an invitation to become a deeper, stronger, wiser, more kickass you. As you open to your experience, you will listen more to your body. It has a story to tell, and an owner learns to listen to her body carefully. When I have pushed myself too hard, my back gives me a gentle nudge that it has had enough. I can listen to that nudge and rest, or I can push harder and spend the next day on a heating pad on the couch. Rather than ignoring what hurts, allow your body a voice in your decisions and actions. This does not mean skipping yoga every time you're tired. Skilled owners can tell the difference between laziness and concerns that need attention. Listen to your body for a few weeks and you will be able to tell the difference between pains that need rest and pains that need to be moved through.
A few years after I first heard it mentioned, the T word came up again—this time at a different nephrologist's office, in a different city. I had created a nice illusion for myself. After the Portland doctor declared that I was stable, I assumed I wouldn't need to think about a transplant again. I felt healthy and had stopped obsessing. I was saying my affirmations and eating spinach and tofu. I had "drunk the Kool-Aid," had fully bought in—I was even giving speeches about attracting health through a positive attitude, for for goodness' sake.
(Continues...)
Excerpted from Chronic Resilience by Danea Horn. Copyright © 2013 Danea Horn. Excerpted by permission of Red Wheel/Weiser, LLC.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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