Thursday, August 20, 2015

Buck Up Buttercup

I think I am turning that corner finally. It’s nice to be a little part of the daylight experience again. Those weeks I was bedridden, my husband was my lifeline to rest of the world. I started wondering if there were still other humans out there. Did a zombie apocalypse happen? Did the machines finally become sentient and take over? I wouldn’t know. I was in bed listening to Enya, focusing all my energy on breathing and surviving.

It’s been a slow climb back. Deconditioning is the enemy with POTS but MG is often the buzzkill for exercise for me. My limbs have minimal movement right now because of the weakness/paralysis, but I am working hard to convince my body it wants to move again. I've been trying to get back to walking and my stationary bike. Slow and steady. I'm moving at a turtle's pace while the rest of the world rushes around me at a hare's pace. Slow and steady.

Willing my legs to move so I can walk with my trekking poles

The last few weeks were some of the worst in some time, but I’m trying to remain undaunted and keep moving forward. The thing with bad patches is they start to feel like they will never end, like sinking into quicksand and every time you move or make effort to climb out you just sink further and further. That's a lesson I hope to learn finally: sometimes you have to just let your body sink and then eventually, with patience and diligence, you make the slow climb out. I'm almost there.

This week has been a significant improvement. I’m taking joy in little things and accomplishments:

One of my friends had a yard sale and gave away many of her vintage clothes. I love all things vintage, and I woke the morning of the yard sale knowing there was no way I could leave my bed/couch still and venture out. The thought of all those clothes sitting there made me so sad. But one of my besties, Carrie Anne, my thrifting soulmate and sister in brokenness, gathered up what she thought I might like and brought them over. My world was complete.

A pile of free vintage clothes. Who could ask for anything better?

Something really really great happened. One of my goals has been to get some of my writing in online publications. I sent out an adapted version of one of my blog posts about learning to live honestly and authentically with illness to a few places. I wrote this post about a year ago when I had to stop working and I had realized I had been living a lie for years and the gig was up. The Mighty picked it up and posted it a few days ago. You can see it here. I'm hoping to start sending more work out there. I recommend all the articles at The Mighty. They post stories from the ill, the disabled, and their allies. It's a great platform for voices that are so often invisible. 

After this article was posted and I started sharing it in some of the groups I'm in on Facebook, I had an unbelievable response and a few people started contacting me. I’ve met some new, fantastic people in the last few days because of this article.

This is my favorite unintended consequence of “coming out” with my illnesses and starting this blog: meeting kindred spirits and so many inspiring people. I had no idea that would happen. I’ve made quite a few friends along the way, those who are “kind of broken” and those who aren’t. That has been an incredible gift. 


I hadn’t left the house for two weeks, perhaps the longest of any rough patch I’ve ever had, but husband took me to the used bookstore around the corner today and I wheeled around a bit. I got a new book to feed my nerd interests. He bought a book about engraving. It was nice to see other humans and to see that the zombie apocalypse had, in fact, not happened yet.

85% of the things I own are books and vinyl records. What's one more?

So there are fewer weeds right now. It’s hard to remember during a really rough patch that things do eventually turn around. It feels like it will never end. But it usually does.

Buck up buttercup. Everything will be ok. 

Friday, August 14, 2015

Everything is Coming Up Weeds

I can’t get a coherent post together, so this one is just some mental dumping until some fully formed thoughts can coalesce.

I think I’ve walked into a portal to another dimension. Can I click my heels three times and get back to the way things were?

Everything is coming up weeds right now, a bit haywire, a bit wrong.

Most of my time the last few weeks has been spent prone in my bed, not being able to sleep, struggling to walk, breathe, eat. These things are still important, right? 

I should write a 12 bar blues about living on just Gin Gins and Ensure. The Bedridden Blues. Maybe I will.

I’ve been extremely depressed. Not just the ups and downs. I’ve been treated for depression most of my life, and I know that I don’t necessarily talk about mental health much here. But I need to. I will. Depression waxes and wanes, but it never really leaves. I can’t shake it. I haven’t talked about it not as a matter of shame but because if I acknowledge it, it means it isn’t a fleeting moment. It suggests more permanence and that’s a thought I don’t want. 

My psychiatrist, who I have been seeing for about 15 years, long before illness came into my life, has been trying to convince me to add on to my regimen to treat this round of depression. Two weeks ago I finally relented and tried something new. My body immediately expressed its dislike of that drug. I was so nauseous it was hard to brush my teeth without gagging. It made my insomnia much worse. It made my muscle paralysis worse. But I tried to stay strong on it for 7 days. On day 7, I called her and said I quit. I hate to be a quitter but the cost was outweighing the benefit. It wasn’t worth it. 

Rolling the dice with medication is my least favorite carnival game. 

I don’t know if I’d feel this awful if I wasn’t on the drug. It’s always difficult to tell: broken or side effects? It’s impossible to know. Either way, I’ve been pushing my body so hard every day to try to exercise and move, but only making myself worse. So now I’m trying to let my body win and just rest. Let my brain just spin wildly and let that motion just take me. I’ve got my books and my documentaries to keep me company. I might try to paint while lying on the couch today. Just roll with it. 

The problem with being out for weeks is nothing gets done. I have appointments to make. I need to find a lawyer because my disability appeal was denied. I’m too ill to go find legal support to prove to this company that I’m sick enough to get my disability benefits. You can laugh at the irony. I am.

I haven’t left the house in a week and I’ve barely gone outside at all. But that will change. The thing with bad days is they do sweeten the good days when they arrive. They are like Karma points. But entire bad weeks on end? Well, I hope that means there’s a lot of chocolate and money coming my way soon.

But I have learned that at some point I always turn a corner. I may not be able to exercise now, my brain is wobbly, I’m having trouble moving and breathing, but things can swing the other way. They usually do eventually.

I think about the beautiful, talented Frida Kahlo, creating indelible works of art while trapped in a bed. She is the benchmark for how to transform disability and trauma into meaning. How to never surrender your talent or voice no matter the limitations of your body. She's often a source of comfort and inspiration for me. She shows me that I can do it. 

So this post is a place marker until I can successfully turn that corner and get back to getting back. I have posts I’m working on, artwork I’m dreaming of, songs that are brewing in my head to get down on paper, people to see. The corner is coming. I’ll be ready. 

Thursday, August 6, 2015

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

Cheers and happy reading!