The Power Of Transformation (Or, My Life In Plastic…Boxes…)

MAC Brave Red

(the name sold me)

 “[…] Feet on ground,

Heart in hand,

Facing forward,

Be yourself.

I’ve never wanted anything.

No I’ve, no I’ve, I’ve never wanted anything,

so bad...(so bad).

Cardboard masks of all the people I’ve been

Thrown out, with all the rusted, tangled,

dented God Damned miseries!!

You could say I’m hard to hold,

But if you knew me you know […]”

- “Good Mother,” by Jann Arden

I’m really trying to learn about myself right now. Part of it certainly has to do with the fact that I am about to embark on my dissertation, a project that will take years and boundless amounts of effort and enthusiasm.

In every meeting about it, the question on everyone’s mind is: will I be staying in Michigan the entire time I am working on my dissertation. My answer is that I don’t know. My boyfriend will be done with his research position in two years. He’s preparing for the next stage of his medical career, and will know a bit more about what that looks like in several months. I’d like to think that we will both be going to wherever he is. (Unless of course I barrel through and finish my dissertation by the time he is done and then it won’t be an issue at all).

I don’t think I thought of myself as the I’ll-go-where-you-go-no-matter-what type, but I despise the thought of a long distance relationship. Just from the short times that we have spent apart, I really don’t think I could do it for any lengthy period of time. It works for some people, but I don’t think I’m one of those people. And if I’m not planning on a top-tier academic job, I will have a bit more leeway in terms of my options. But the jury is still out about that, too. I’m trying to figure out exactly what kind of job I want.

*****

I’m learning to compartmentalize. I had three sessions with a personal trainer. She did these stretches and I literally thought my leg was going to break, but I felt so energized the rest of the day. And the next day, I did a three mile walk. Then I was exhausted. I think this is a metaphor for my life, in general. There needs to be balance in my life. And the part I really want to control, whether I’m healthy or sick, is really the aspect that I have the least control over.

I’ve realized that one of the reasons I’m so inflexible is because whenever I’m in pain, my go-to position is the fetal position. But pushing my body to its limits made me realize that mobility really is good for the joints. It’s a catch-22, but I am trying to be more active.

Although it’s funny, because in trying to compartmentalize, the more and more various aspects of my life get woven together. Maybe this is a good thing?

If there’s one thing that lupus and rheumatoid arthritis have taught me, it’s to live out loud, to not hold back.

I recently bought red lipstick. And some crazy shoes. I’m not saying that every transformation should be physical and outward. In fact, most of mine has not been. But the red lipstick has been on my bucket list for years and years, I just never felt confident enough to pull it off before now.

*****

I was recently going through some old things, realizing that I have organized my possessions in plastic boxes. It’s funny to take stock of the things that I’ve done in my life, the experiences I’ve had, and to have them cataloged in plastic boxes. All of these memories preserved, as if ready to be put in some museum.

I think that partially, this representation of my organized and anal side, has served a purpose that has gotten me through life, and through the beginning years of being chronically ill.

It’s rare that I don’t know where things are, and when I can’t find something I’m looking for, it can send me into a tailspin. So it makes sense that when I got sick and my world was unrecognizable, I demanded of myself keeping everything I could as orderly and together as possible.

But you can’t take the things with you…

So often over the past few years, I’ve found myself feeling restless, unwelcome, and out of place, like a stranger out of time. I no longer knew what had brought me to a top three graduate program in my field, or quite frankly, what I was doing with my life at all. Though a diagnosis of lupus and rheumatoid arthritis is not immediately life ending, it is immediately life altering.

Despite everything, I am moving forward and moving on. Despite how much the last nearly three years have been marred with pain, suffering, loss, confusion, and at least one million crises of identity, I’ve done it. And speaking of identity crises, please check out this great project that I am honored and excited to be a part of: Smart People on Bad Days. And check out my story here.

It’s about the fact that against the most formidable of enemies, I won.

But the enemy that I beat to get to the final stages of my graduate school career wasn’t illness. It’s not a fair fight, so I don’t bother battling. The enemy has been academia, and the doubters and naysayers that have gotten in my way, and made me question my place at this university, in my field, and ultimately, in the universe. The more I think about it, the more I also realize that the enemy was myself. I’ve been standing in my own way. And I finally got the hint and moved out of the way.

I haven’t felt this positive and hopeful in a long time. I haven’t felt that the future was worth making an effort for. But other things are going well in my life right now, too, and this makes me feel like somehow I’ve evolved beyond the person asking ineffective questions and trying to put things back to the way they were pre-illness.

But I am wise enough now to know that such efforts are completely and utterly futile. They won’t get me anywhere, and in fact, they’ll probably end up holding me back.

Here’s to looking forward to the next chapter…

Life is certainly different now than it was several years ago.

Yes, I can walk in these...

(And sometimes, retail therapy is just necessary)

The Greatest Gift

I read an article back in April about young people blogging about death. You can read my post here. The article chronicled Eva Markvoort, a Canadian, 25 year-old who had cystic fibrosis, and died in April from chronic rejection, while waiting for a second double lung transplant. She was an outspoken advocate in Canada for both cystic fibrosis and organ donation. And she was the subject of the documentary “65_RedRoses” (which as far as I can tell, is not available in the United States as of yet). She also authored a live journal/blog of the same name (which her parents continue to update).

I’m not sure what drew me back to her site. She had already passed away by the time I heard about her.

I spent the better part of a night watching the video of the memorial service for her. And crying. It was called “A Celebration of Love”, and that’s exactly what it was. If love could save lives, she would still be here, for she gave and received so much love in her short life. I didn’t know this person, but I felt like I did.

We can certainly learn lessons from this, and many of us with illness – especially those who have a pre-illness life – will agree that we live life differently now, because we are aware that time is short, finite, and uncertain. We have to be thankful for everyday we have, and all that we are able to experience with the time we have.

It makes me feel overwhelmed that I need to do something about this, that young people don’t keep getting taken away from us far too soon. In my own experience, I’ve seen this a few times, and it’s a few too many. Parents should not have to bury children.

Eva’s message was all about love. And she lived by the quote, “The greatest thing you’ll ever learn is just to love and be loved in return.” And not just romantic love. But also the love of family and friends.

My boyfriend’s grandfather passed away this week. Right now we are in New Jersey. I know that ugly family disputes can sometimes occur in these kinds of situations, but in this case, all that is left is love – the love that the surviving family has, and the love that the deceased person had for them.

My boyfriend’s brother is a Rabbi, and delivered a beautiful eulogy. It made me feel like I had known his grandfather personally, even though I unfortunately never got the chance to meet him.

And as the date grows closer to celebrate the Bar Mitzvah of one of the children of my cousin who passed away last year, I find myself thinking about him. And I think of my cousin often. I have a picture of him on a dresser in my bedroom. I have not been to his gravesite. I will go at some point. Sometimes it’s hard to move on for reasons that are unknown.

As my cousin grew closer to death, he lost his faculties, and I believe, a core part of who he was, was lost along the way. I won’t speculate further, because I wasn’t privy to his last few months, but I know that it wasn’t a beautiful, celebratory experience. It was horrific, and no one should ever have to go through it.

So how do we make sense of the unfairness of life? How do we comprehend such bright lights being taken away from us? How do we attempt to live by example when they are no longer physically present to guide us?

And why do some of us find the need to make public something that is considered to be very private? This is not everyone’s cross to bear. Talking candidly about illness, death, and core beliefs is not something that everyone feels the need to share.

I recently finished reading “Promise Me” by Nancy G. Brinker, founder of the Susan G. Komen Foundation. Before Susan died, she implored Nancy to help other women with breast cancer. Nancy made a promise. It’s a true testament to sister’s love. (I won’t voice my qualms with the foundation here)

And that’s what I keep coming back to. Love…love…love...

If illness has taught me anything, it’s to live life out loud, to not hold anything back, because you never know what tomorrow is going to bring.

And I’m in love, more than I ever thought was possible. It is truly such an amazing gift.

In the end, love is all there is. Love given and love received. Pure, unadulterated love that isn’t apologized for or couched in lame platitudes.

I’m sure it’s different for someone who has been dealing with illness for their entire life, as opposed to someone who gets sick at some other time. But it doesn’t make losing them any easier.

I think the reason why these cases of young people getting sick and dying, like Randy Pausch (who I blogged about, and whose death touched me deeply despite the fact that I didn’t know him personally), captivate us because we secretly hope for the happy ending. We hope that a cure will be found or an organ will be procured before it is too late. Lately, I feel myself immersed in these kinds of stories.

And I have to wonder…

Did Eva get her happy ending? I sincerely hope she did.

Guest Blogger: Toni Bernhard

Several days ago, I finished reading the book, “How to be Sick” by Toni Bernhard. I thoroughly enjoyed the book, and am excited today to have Toni as a guest blogger on Getting Closer to Myself, as part of her virtual book tour. How did you get sick?

TB: I fell ill on a trip to Paris in 2001 with what the doctors initially thought was an acute viral infection, but I never recovered. After six months, I was given the diagnosis of ME/CFS (Myalgic Encephomyalitis/Chronic Fatigue Syndrome), although since that time, several other acronyms have been used to describe my illness, such as VICD (Viral Induced Central Nervous System Dysfunction) – a working theory of an Infectious Disease doctor from Stanford.

How did you come to write the book?

TB: I was completely unprepared for such a drastic change in my life. I was a law professor. I liked to travel to see my family. I liked to go on meditation retreats. I was active in the life of a young boy as his CASA (Court-Appointed Special Advocate). Suddenly, I couldn’t do any of those things. Despite years of Buddhist practice before I got sick, I fell into alternating states of denial, anger, self-blame, and even despair. We live in a culture that worships at the altar of wellness. It’s okay to get sick, but then you’re supposed to get better. Everyone expected that of me and I expected that of myself. Every night I went to bed expecting to wake up feeling like my old self even though for months and then years it had not been the case. So, in addition to my physical suffering, I was suffering a lot in the mind. It took 5-6 years to find my way back to the Buddha’s teachings on suffering and to the many practices that can help alleviate these painful thoughts and emotions. Once I began to change my relationship to chronic illness, I wanted to share it with others, so I wrote the book. The book is not about my particular illness. It’s intended for anyone suffering from a chronic illness or condition.

How has Buddhism helped you cope with chronic illness?

TB: First, it’s helped me understand my suffering. Second, it’s helped me to work with the stressful thoughts and painful emotions that accompany chronic illness and chronic pain. I think of the Buddha the way the Dalai Lama does – as a great psychologist. He had a keen understanding of how the mind works. Everyone’s life has its unique mixture of joy and suffering. The Buddha focused on suffering because it’s a truth about life that we tend to ignore or turn away from. It comes from the Pali word, dukkha which really means dissatisfaction with the circumstances of our life. In the first noble truth, the Buddha simply stated that, despite our best efforts to avoid it, everyone has their share of dukkha – both physical and mental – meaning we’re all dissatisfied in some way with our life. For one thing, we’re in bodies and bodies get injured and sick and old. Dukkha for me has included this illness. For others it could be frustration on the job, tension in a relationship, a bad living situation, even frustration over not being able to find your car keys!

It may sound counterintuitive, but when I started to really take in this first noble truth, I felt a great sense of relief. Finally, someone was describing life in a way that fit a good portion of my experience. What a relief to know it wasn’t just me or just my life!

So, we’re all dissatisfied with some of the circumstances of our life – unless we’re enlightened, of course! In fact, that’s my own personal definition of enlightenment: not being dissatisfied with the circumstances of my life. Just imagine for a moment not being dissatisfied in any way with how your life is going – opening your heart and mind to the unpleasant stuff too; just giving up all longing for your life to be other than it is. Just for a moment, drop all that craving, all that desire. It’s a relief, isn’t it? Those “wants/don’t wants” (as I like to refer to longing or craving) will almost immediately pop back into your mind, but it’s a taste of freedom, a taste that lingers.

The bottom line is: We have the life we’ve got – with its unique configuration of joy and suffering. We can’t always get rid of bodily suffering – the Buddha experienced great bodily pain at times. But we need not add mental suffering to that bodily suffering. We can do something about painful emotions, such as worry, fear, anger, resentment. We can do something about this constant craving for things to be other than they are in our lives. We can do something about stressful thoughts that, when left unquestioned, can lead us to spin elaborate stories we tell ourselves about our life and our future – stories that have little basis in reality.

How does the book address this mental suffering?

TB: That’s the heart of the book – specific practices that help loosen the tight-fisted grip that painful mental states have on us. One way to do this is to bring them to awareness (sometimes called mindfulness), to expose them to the light where we can see them for what they really are – impermanent for one thing (thank goodness), and also not inherently a fixed part of our identity. We are not just our pain. We are not just our illness.

The book contains several practices, some Buddhist some not, that help us question the validity of our stressful thoughts – those stories we spin about our lives – that have little basis in fact (“I’ve ruined my partner’s life,” “My friends don’t care about me.”). I’ve been helped tremendously here by Byron Katie’s technique for questioning the validity of our thoughts (there’s a chapter in the book devoted to her work) and also by a couple of Zen practices that keep me questioning my assumptions. “Am I Sure?” I’m always asking (thanks to Thich Naht Hanh). Am I sure the doctor I saw doesn’t care about me? Maybe he’s terribly overbooked today. Am I sure my friend has lost interest in me? Maybe she has problems of her own.

And the book contains many practices to help loosen the grip of painful emotions. Since emotions manifest in the body, this can even help alleviate our physical symptoms. One way to loosen their grip is to consciously cultivate calm and gentle mind states such as loving-kindness, compassion (both of these for ourselves first), and equanimity.

Some Buddhist scholars even equate equanimity with enlightenment, saying that if we can be calmly present with both our pleasant and unpleasant experiences, riding the waves of life’s ups and downs without the constant craving for things to be other than they are, we’ll know complete peace. And then, as the Thai forest monk, Ajahn Chah liked to say: “Our troubles with the world will have come to an end.” (On this score, I’m a work in progress!)

What challenges do you specifically address in the book?

TB: Whether chronically ill or otherwise disabled, we face so many sudden and unexpected challenges. Here are some I talk about in the book: coping with the relentlessness of symptoms and with the disappointment of failed treatments; learning not to blame ourselves for being sick; overcoming fear about the future; coming to terms with a life of relative isolation; handling being misunderstood or ignored by family or friends; dealing with cursory or dismissive treatment from doctors or other medical people; and, for a spouse, partner, or other caregiver, adapting to so many unexpected life changes.

Do you have to be a Buddhist to benefit from the book? (I’m not, and know very little about Buddhism, but still found the book to be quite helpful – especially as a young person trying to make sense of illness)

TB: No. The book is non-parochial. Many people, and I’m one of them, don’t consider Buddhism to be a religion in the traditional sense. It’s a practical path; it’s about how to live life day-to-day. The practices in the book will work for anyone, even for (as some reviewers have pointed out) people who are in good health!

In 1982, Toni received a J.D. from the School of Law at the University of California, Davis, and immediately joined the faculty where she stayed until chronic illness forced her to retire. During her 22 years on the faculty, she served for six years as dean of students. In 1992, she began to study and practice Buddhism. Before becoming ill, she attended many meditation retreats and led a meditation group in Davis with her husband. She lives in Davis with her husband, Tony, and their dog, Rusty.

Thanks, Toni, for sharing your story and book with us! And thanks for letting Getting Closer to Myself be a part of your virtual book tour. I’ve enjoyed having you here today!  And by the way, I love the butterfly on the book cover!

Toni can be found online at www.howtobesick.com. And feel free to leave comments for Toni here, at Getting Closer to Myself; she promises to check back often!