Month of Gratitude, Week One: Satisfaction

As it is the month for gratitude, I am going to write at least one post a week this month discussing illness and gratitude. Although illness has taken many important things from me, there are many gifts it has given in return. One of the most important lessons illness has given me is to learn how to be satisfied and gracious in that satisfaction.

Dissatisfaction is a state of being for many of us, and it can be a valuable tool to help us achieve goals. I lived most of my life always thinking, literally, “what’s next?” I wouldn’t have been able to go to grad school twice, achieve my goal of getting a tenure-track professor position, climb mountains, or power through illness like a warrior the last few years if I didn’t know how to channel “what’s next?” into achieving goals.

Yet, this “what’s next?” also pushed me to make choices that weren’t good for my health and, more importantly, it blinded me to the immeasurable gifts I already had in my life. If I have one regret since getting ill it is that I took too much for granted and didn’t appreciate what I once had that is now gone. “What’s next” was a distraction from being mindfully present and allowing myself to surrender to satisfaction, to look around me and feel grateful for my life.

We are trained from a very young age to never be satisfied. We are conditioned to become consumers from the moment we are born and to look for “bigger and better.” Satisfaction, in American culture especially, is a truly radical idea. Everywhere we turn, we are constantly persuaded to want more and to be more. “Bigger and better” and “what’s next” are illusions; they create desires that can never be quenched.

Yet, as the speed in which my world spins has slackened, as the alacrity of my own body has dampened and my legs—once athletic and invincible—stumble along at a glacial pace now, I am now still much of the time. It has helped my mind be still as well. In moments that are thick with suffering when I’m lying in bed and surviving moment to moment, I am forced to live in the present. The pace of my world has significantly decelerated, but the images of life are no longer blurred in speed. They have color, texture, definition.

It seems ironic that illness would give me this lesson. If we are often told “your health is the most important aspect of life,” then you would think living with a life-limiting illness would be the most unsatisfactory state of being. Yet, “your health is the most important thing” is a platitude; it assumes that those of us who live with chronic illness have nothing because we don’t have “our health.” This is fundamentally false. The loss of my health and my independence has taught me to value what I still have and despite being ill I can still enjoy what I still have.

It has taught me that there are moments to savor in life. There are moments when all of the ingredients of life—the people in our lives, the words we say to each other, our perceptions of the world, our self-image—meld into something truly delectable. These are the moments when we can feel truly alive, feel the electricity of being human. These moments were not on my radar before illness—before I was forced to be still and live in the present. When you live under the spell of “what’s next,” it’s easy for these moments to pass by.

I try to find moments throughout the day to just breathe in satisfaction and feel it completely. 

Feel...

Satisfied with the limitations I have now and what I can still do

Satisfied with my appearance

Satisfied with spending most of my time at home

Satisfied with each moment I get to be outside and be part of the world

Satisfied with my relationships

Satisfied with my material possessions

Satisfied with how I physically feel in this moment right now

Satisfied with my talents and abilities

Satisfied that the present is here but the future is a mirage

Satisfied with the treatment I have right now

Satisfied with the time I had with my mother

Satisfied with the change I am able to enact in the world

Satisfied with the energy I can give to others

Satisfied that my condition may get worse or get better

Satisfied that I may work again or I may not

Satisfied that my place in the world is just as it should be right now

Feeling satisfied at times doesn't have to stop us from setting goals and seeking improvement in our lives and in the world around us, but it's ok every once in awhile to appreciate and value that what we have is enough. Satisfaction also doesn’t have to be a constant current and it is by no means a constant sensation for me, but illness has forced me to look around at the world and appreciate the gift of life. It is an integral part of living with acceptance. In those delectable moments I can say thank you for the giftedness of life, even if it’s just for a breath—but I’ll make it a long breath and try to feel an entire lifetime of satisfaction in that moment.

I hope that you also have moments of pure satisfaction, moments where you can just stop and say "thank you."

How has illness or any other setback in life helped you feel gratitude? 



Here's a great TED Talk about gratitude: "It is not happiness that makes us grateful. It's gratefulness that makes us happy"

Spoonie Reads: Toni Bernhard's "How to Be Sick"

I’m excited to start this new section on the blog today. I have wanted to start it for some time. Like many of you, I find the best way to understand anything that is nebulous is to read about it. What could be more absurd and confusing than illness, right? As an academic, the first place I always turn when I have questions or need context is a book. So as I read more books that relate to illness, I’ll write a post about them and try to explain how they are useful if you would like to read them. 

Many who have chronic illness—those who are newly diagnosed, undiagnosed, or diagnosed many years—have turned to Toni Bernhard’s How to be Sick: A Buddhist-Inspired GuideFor the Chronically Ill and Their Caregivers. It’s a great starting place for understanding what life with chronic illness entails and how to navigate the treacherous waters that come with it. Although Bernhard uses Buddhism as a framework for understanding illness, the text does not cover the tenets or history of Buddhism nor is it designed to convert. Buddhism is discussed as a tool for coping with illness, but it is not the focus of the book.

The book is geared specifically to those with illness and those who care for or care about anyone with an illness. You won’t find medical research or specific information about disease. The author does have Chronic Fatigue Syndrome (ME) and POTS, which I hadn’t realized until I started reading it. Yet, she makes this book accessible no matter what illness the reader may be coping with. You won’t find information about the practical, gritty concerns of illness in this book such as navigating the medical system, applying for benefits, managing specific conditions, etc. This is essentially a self-help book that borders on psychological cognitive therapy. Bernhard's intention is to help those who suffer with illness work toward acceptance and make peace with their irrevocably altered life. Using Buddhist teachings and the concept of mindfulness, she offers cognitive pathways throughout the book that are designed to help those with illness be mindful of destructive thought processes and re-orient them instead to be productive and positive.

The strength of this book is its accuracy in representing the universal experience of illness. She touches on all of the cardinal obstacles many with chronic illness will at some point face: doubt and insensitive comments from doctors and friends and family, grieving a former life, self-blame, confusion and frustration, the long road to acceptance, seeking answers when none may exist, and courageously rebuilding a life despite illness. It is the last point that is the overlaying theme of the book. No matter how resilient you are, that resilience will be tested after illness and Bernhard offers suggestions for reclaiming that resilience. 

She begins the book by stating that a basic tenet of Buddhism is that “life is suffering,” explaining that this is not a gesture toward resignation but instead acceptance that life is in constant flux. She mentions that this should be a source of strength. To understand this, she says she repeats to herself “You know this is the way it is. You were born and so are subject to change, disease, and ultimately death. It happens differently for each person. This is one of the ways it’s happening to you.” Suffering can be used as an emancipatory concept to accept what you are experiencing and find a way to thrive and let go of the self-blame that is so common with chronic illness. Suffering as a form of strength and perseverance underpins many of her points throughout the text. 

There are a few points throughout the book that were memorable to me that I will mention, and even though I read this book a year ago, they have continued to help me with the tough emotional work of managing illness. She discusses the Buddhist idea that there is “no fixed self,” meaning that the “I” we use to understand ourselves and the world, is constantly changing. Thinking of ourselves and our bodies this way is useful for seeing our experience of illness objectively. She states, “contemplating the truth of no-fixed-self has helped me tremendously since I became chronically ill” because “what happens in life arises out of conditions, not from a ‘me’ in control.” Relinquishing this sense of control or the idea of any fixed state of being is useful on the really bad days. It can be a source of hope. She has a mantra to remind herself of this: “there is sickness here, but I am not sick.” I have repeated this on my bed-ridden days. It’s useful to remember that illness is not my identity and the experience of illness and life in general is constantly changing. The bad days and moments are transient.

Sometimes it feels like illness washes the entire world in a grey haze, but maintaining our humanity and remembering to feel joy is still essential. When I can’t do the things I want to do or be with my friends and family, I think about what Bernhard said about “cultivating joy in the joy of others.” This is a good antidote to the inevitable envy of those who are well that so many of us experience. When I can’t go to an event or leave the house, I try to feel joy that my friends are spending time with each and they are having fun. It’s difficult to do, but it always helps me get around the disappointment.

For me, the most useful point she makes is learning how to feel compassion for ourselves and our bodies. I have spent most of the years I’ve been ill punishing my body for being ill and forcing it to do things it is incapable of doing because I refused to accept my limitations. This obviously led to enormous frustration. It’s a product of guilt and self-blame. But Bernhard mentions that feeling compassion toward our own suffering is a way to surrender, accept, and cope: “When cultivating a compassionate mental state, sometimes I look for words that address the source of the suffering … I might silently say ‘It’s so hard to want to so badly not to be sick … my poor body, working so hard to feel better.” On the really bad days or when I feel like giving up, I think of these words and feel some compassion for myself instead of blaming myself for struggling to endure.

There is much more in this book that offers useful cognitive re-framing to understand and manage illness than what I mentioned here. After reading it, I did wish for more depth in terms of narrative and the application of these points, but perhaps that’s more a matter of personal taste than a deficiency in the book. I have some parallel experiences to hers, which I found so amusing that I talked to her on Twitter about it. We’re both academics, have POTS, and live in California’s Central Valley. When she mentions the embarrassing lengths she had to go to while teaching and being severely ill, I had a visceral connection with her. I had to do the same thing.

This book is educational in learning how to do more than just exist and survive with illness. It can help you on your path of learning to live well and fully while ill.

This book has been so successful that she has written multiple sequels to it that focus on other topics. I recommend this text in your studies of chronic illness and managing your condition or even understanding how a loved one lives with illness. You can find her website with a list of her books at www.tonibernhard.com.

Cheers and happy reading! 

Learning to Breathe Again

I wrote in my last post that I was coming out of a rough patch. I’m still working my way out of it. I’m recovering from a sinus infection and things continue to get worse and worse with my family situation. But I’m working on getting my groove back. I’m working on getting back to my goal of posting at least once a week.

I’m working on showing up to appointments again too. I haven’t been to physical therapy in almost two months and the irony is, I have to rebuild my strength so I can go there and rebuild my strength. This week, I’ve been able to spend less time in bed and more time in my yard. The rest of the country is under a deep freeze and here in California, we’re worried that summer is coming way too soon. I want summer, and the brutal heat that comes with it, to take its sweet time.

I did manage to show up to an appointment a few weeks ago for pulmonary function testing. I mentioned before that I was going to do pulmonary function testing because I have this annoying problem of not being able to breathe. I’ve had difficulty breathing since the POTS started in 2011 but along with many of my other symptoms, it has worsened considerably over the last 10 months. I often wake up in the middle of the night or in the morning not breathing. I started taking Mestinon and that helps, but it hasn’t solved the problem. Thank god for this canned oxygen I bought on Amazon. It really does this trick, and especially kills the brutal chest pains that come with the difficulty breathing.

The test is called a spirometry test, and it proved, finally, that I am having trouble breathing. My neurologist suggested it to see if I maybe, possibly, probably have Myasthenia Gravis. I usually get a picture taken during tests so I can show what it looks like, but this test was over relatively quickly so you just have to imagine me sitting in my wheelchair, breathing hard into a tube, and trying to look fabulous.

I had to inhale and exhale quickly into a tube and try not to pass out. I had to do that a few times. The last one I did, I guess my brain started turning off. Once I stopped huffing my lungs out into the tube, I looked up to see my husband and the nurse wide-eyed and ready to catch me. They asked if I was ok, and I was fine. I wanted to say, “is that all you got? What’s next?” It wasn’t pleasant but it was over pretty quickly, and no one had to catch me. 

I got a copy of the results and faxed them to my neurologist. I didn’t expect him to make any comment or finally provide a diagnosis, and he didn’t. I get to add to my perennial growing list of specialists and see a pulmonologist now. I’ve always assumed the breathing problem was related to POTS and the maybe-probably-Myasthenia, but my primary doctor mentioned that perhaps it could be something else. That’s not something I’m ready to wrap my brain around.

The best part was when I looked at the results again a few weeks later and saw something I didn’t see before: A line that said “Patient’s lung age: 76.” I showed it to my husband and we had a good laugh. I guess I finally have proof that I really am young on the outside and old on the inside, like a really good fine wine or a Twinkie that’s been in a drawer for years.

It's nice to show up. The stress of the last few months has seriously affected my health and contributed to being bed-ridden for weeks. I’m relatively resilient but my body is a delicate flower. It doesn’t take much to make everything start shutting down, especially the breathing problems. I’m working on removing myself from stressful situations, staying positive, and trying to stay well. It feels selfish in some ways, but more than anything, I have to survive. I have to be able to get out of bed every day.

Being ill is a full time job that takes immense daily effort. You have to eat the right things, take the right pills at the right times, exercise enough but don’t overdo it, keep up with appointments and testing and communicating with doctors, managing symptoms, resting, and try to keep enough energy for loved ones and for yourself. Those weeks I was bedridden I got incredibly behind. I’ve written before how beneficial mindfulness is and I’m really cultivating that practice and I’ve been meditating almost every day, focusing on living in the present, breathing, and appreciating the gifts of life.

I can’t remember the last time I went out in public, but last weekend I convinced my husband to take me to the consignment store that is just down the street from where we live, one of my favorite local stores. I grabbed my walker and as soon as I walked in I saw it: a gorgeous, vintage baby grand piano. Our eyes met from across the room, and it was love. I parked the walker and never even looked at the rest of the store. I played that piano as long as I could until my energy ran out, and my wonderful husband waited patiently until I was done. I’ve been thinking about that piano every day since. I need to come up with $5k to buy it. That moment filled my heart with so much happiness that it washed away the trauma and stress of the last few weeks for awhile. It was glorious. Next time I go, I’m going to try to get a video of me playing it and I’ll share it here or on the Facebook page.

I had big plans for 2015, hoping I could navigate the chaos of life a little more, but it’s been a very rough ride so far. I still always have faith in a better tomorrow and believe that you have to wake up every day, stand strong (wearing your compression stockings), and face whatever may come. Life may knock you down and take your breath away, but remember all the times you were able to get up before that. You’ll get up again. You’ll get up every time.

Standing strong, with a little help

Mindfulness

If you are an adult living in the modern world, you know that stress is a bitch. It’s also an essential, inescapable part of life. Often it is our response to and perception of situations that determines our stress levels. You may think you’ve mastered strategies to tackle stress in life, and then chronic illness throws you a curve ball.

Illness causes an immense amount of chaos in your life. It is an unpredictable beast. The key is managing the stress this causes because stress will aggravate illness. Most patients with Dysautonomia and other illnesses are sensitive to medications so anxiety treatment often needs to be in a non-pill form. We need other strategies to manage the anxiety that comes with illness.

When I got ill and left grad school, I started seeing a therapist who happened to have a background in mindfulness. I am incredibly thankful that our paths crossed and she introduced mindfulness practice into my life. Mindfulness is useful for anyone and especially for those who are ill.

I promise I am not trying to drop some New Age-y nonsense on you or start selling you crystals or ask you to join a yoga cult. This is a simple technique that has given me much relief so I wanted to share it. Mindfulness essentially means training the mind to concentrate on the present by focusing on the breath and the physical body and surroundings. Psychology Today defines it as “a state of active, open attention on the present. When you're mindful, you observe your thoughts and feelings from a distance, without judging them good or bad. Instead of letting your life pass you by, mindfulness means living in the moment and awakening to experience.” You do not have to be a Buddhist or ascribe to any religion to enjoy the benefits of this practice, but mindfulness and faith can go hand in hand if that works for you. Prayer is essentially a mindfulness practice.

There are many avenues to achieve mindfulness, and it is a practice I have been working on the last few years. Meditation is probably the most obvious form of mindfulness but it isn’t the only form. If you’ve never meditated before, it might be strange to try it for the first time, but it’s easier than you think. There are quite a few free apps you can download to get started. Headspace is a popular one. There’s also Calm.  You can also find videos on Youtube. Search for “guided meditation” or “guided visualization” and see if you find one that sounds beneficial, such as this one. You can also find meditation music on Youtube as well.

What I like about meditation is you can make it your own, such as connecting it to your faith or finding a regimen that works for you. My therapist wanted me to meditate every morning and evening but that can be a tall order so my goal is to meditate at least once a day. I like morning or just before bed the best. The most difficult part may be carving out some time for yourself without interruption.

My routine goes like this: I usually start sitting with legs crossed but I have too much weakness and neck pain to sit for too long so I eventually lie down. I do a 20 count of deep breaths, speaking one word in my head when I exhale, such as “rest” or “calm.” Sometimes I focus on a visualization such as lying on a beach and imagining the tide washing over me and washing away the tension and anxiety with it. Often, I imagine floating among the stars.  I think about the energy of the world around me and the mysteries of the universe. It helps me escape my physical body and feel connected to something larger, especially as often feel isolated from humanity. It’s a chance to feel free of that pesky mind-body dualism. I might speak a mantra in my head such as “I trust my body. I feel strong. I feel connected.” I try to do a minimum of 15 minutes but a half hour would be ideal.

There are also books to help you find your own mindfulness practice. A great place to start is Toni Bernhard’s How To Be Sick: A Buddhist-Inspired GuideFor the Chronically Ill and Their Caregivers. She offers suggestions specifically designed for the chronically ill and she even has POTS as well. I particularly like her suggestions about learning how to be compassionate for yourself and your struggling body and learning how to find joy in others’ joy.

You don’t have to meditate to practice mindfulness. Simple activities we do every day such as cleaning, cooking, reading, writing, drawing, playing music are ultimately mindfulness tasks. They are an opportunity to live in the present moment without thinking about the past or future and just focus on a task or creativity. When I am able to play music and I’m in the middle of a song, I feel truly free. I can let go of the physical symptoms and just ride the wave of the music until the end.

When you realize that these activities are opportunities for mindfulness, you can really embrace them and enjoy those moments, even if they seem mundane. If you can do these tasks despite pain or fatigue, it may be an opportunity to focus on the simple intricacies of the routine and let go of focusing on the physical symptoms for awhile.

I find myself, especially during the difficult times of when I am bedridden or lying ill on my bathroom floor, obsessing about illness and my symptoms. It’s difficult to not feel like the world is crumbling from under me in those moments. Even when I’m just sitting on my couch I can feel my mind start spiraling into anxiety about the future. These are opportunities to take a step back and focus on the present moment. Focus on the breath and stay calm. Mindfulness can train you to do this, but it definitely takes practice. It can alter mental patterns and destructive thinking. 

Sometimes I do the 20 breath count in these moments. If I’m having a difficulty sleeping, I’ll get out of bed and do the 20 count. It stops my brain from spiraling out of control and contributing to physical symptoms. When I was teaching, I tried to do the 20 count between classes just give my brain and body a rest.

Now that I’m not working, I’m trying to get back to meditation and a determined mindfulness practice again. Meditation actually had a benefit I didn’t expect. It gives me boosts of creativity. After meditation, I often feel like I was just given a cosmic hug. 

I hope that this is helpful to you and that you can introduce mindfulness into your life as well. We all know the brutality illness can cause in our lives but it can also open new possibilities and opportunities to know ourselves and feel gratitude for the world around us. Mindfulness could be an option to fulfill these positive aspects of illness.

Here are some related links that might be useful:

"The Power of Concentration": A NYT article about mindfulness and concentration

The Six Benefits of Practicing Mindfulness Outside of Meditation by Toni Bernhard


"All It Takes is 10 Mindful Minutes" Andy Puddincombe's TED Talk about mindfulness

"Mindfulness Meditation Physically Changes the Brain"

"6 Mindfulness Exercises You Can Try Today"