Reflections On and a Moving Response To My "Anniversary Post"

"There are a thousand thousand reasons to live this life, every one of them sufficient."

--from the book Gilead (am I really quoting this book again? I guess it was worth listening to?)--

After I posted my latest blog entry I was a bit scared. Had I said too much? Had I been too honest? Should I have sugar-coated more? Should I continue to sugar-coat in the future? My parents pain was so evident that they could not even acknowledge my blog entry. Creating pain for others is NOT my goal. But, being honest about chronic illness IS my goal. So, I may be more honest now...because 'filtering' what I say may not be helping any of us in the end. I tend to be a 'sugar-coater'--because I want to 'protect' others as well as myself. A couple of years ago, I admitted that I had been sugar-coating my emails to my specialist as to how I was doing--and he immediately responded that sugar-coating was going to get neither of us anywhere.

I was relieved to receive quite a few responses, many overwhelming me with love. And that all my friends and family hadn't gone running. One sentence is all it takes to let me know you're reading and loving me through this. It's a lot to take--it's too much to take for me most days. So, I do what my friend, Steph, says to do--spread it out! Tell some friends some things and others other things! I received messages that reminded me to dare not write back, messages that made me laugh, and messages that offered me Iowa hugs--oh how I long to be embraced by my Iowa family.

Most moving was an entry from a woman who I was friends with in high school. She and I reconnected at our ten-year high school reunion, after which the you-know-what hit the fan for me health-wise and we lost touch again. I couldn't believe that this friend who I feel incredibly connected to, but really have seen very little of, was moved to write an entry on her blog about my experience. It moved me to tears. And it captures what I think so many people feel when they are faced with a friend or loved one who is sick or dying. I remember Tess asking me at our reunion, 'Will you be okay,' and her eyes longed for me to say, 'yes'. All I could say was 'I don't know.' She moved me then, two and a half years ago, and she overwhelmed me this day. Her honesty and openness may strike a chord with many of you--either those on the side of illness or those watching a loved one who is sick.

It is my hope that by sharing my experiences, someone will suffer less because they found an answer sooner or had support sooner than I did. I hope too that my journey not only helps others who are chronically ill, but those who are not and those who are caregivers. Someday, I believe, there will be answers for Dysautonomia and Lyme, and others will benefit from those of us who came before them. Yes, there are a thousand reasons to live this life--and sometimes they are different than we ever imagined. But remembering that each life matters is, well, what matters.

Thank you to those of you who read my entries. I know they are difficult sometimes. My heart was broken when I realized that my story moves Tess to tears.

Here is the entry posted on her blog the day she received my email about my anniversary and read my post. Her blog is www.archwords.blogspot.com and I have put it in my 'links' section. Tess is an exquisite writer--and has been since our days in high school (Tess, you took up all the space in Aclivity! hahaha). I only wish I could write like her! Watch for her to publish a novel one of these days. And read her blog for its honest look at life in the Midwest, writing, and parenting.


From Archwords, a blog by Tess...

Tuesday, June 19, 2007

"Thank You for Your Great Effort"

This morning, I received an email update from a high school friend. In all honesty, sometimes it is hard to read her emails and her blog. A month after she graduated from college, Emily became mysteriously ill, and she has battled a serious illness for the past 9 years.

Today I read her blog post about her 9-year anniversary of becoming sick. I link to it here because it’s beautifully written. It’s also very sad. I’m absorbed in my daily life of family and work, and her blog posts about illness and pain seem to come from a different world. It’s hard to believe that our lives have diverged so sharply since high school.

Her posts make me cry. Reading them, I feel mixed emotions: guilt that I have things that she longs for (a child, a husband, work, the ability to move without pain); renewed gratitude for the blessings of my life that are, all too often, invisible to me; sadness that someone I would have described in high school as sunny or bubbly is now suffering so deeply; joy at her connection to beloved friends and family; a sense awe at her faith; and humble gratitude that she has shared her journey with the people who care about her.

It’s not easy reading about Emily’s physical pain and her spiritual struggles. Part of me wants to follow a Spirituality-Lite kind of thinking: What a great reminder for me to count my blessings! But it strikes me as horrid to turn another human being into a simple story that reflects only on me, something to ponder before I drink my coffee and then forget about as I move on with my day. Another part of me wants to respond shallowly: Thanks for the update! Hang in there! But instead of those distancing responses, I’ve been trying this morning to articulate something deeper.

In Writing Down the Bones, Natalie Goldberg tells the story of Shunryu Suzuki, founder of the San Francisco Zen Center. Suzuki was lying on his deathbed when an old friend visited. Suzuki said simply to his friend, “I don’t want to die.” His friend bowed his head and replied, “Thank you for your great effort.”

Now this story illustrates part of what drives me crazy about Zen Buddhism. I want the dying man’s friend to take his hand and say, “It will be okay” or “You’ll be at peace soon.” I mean, the man is dying—why not try to make him more comfortable or distract him? When I first read the story, I felt scared, and I wanted to push that feeling away. I skipped ahead to the next chapter.
But I found myself thinking of this story after I read Emily’s posts about her illness. In the story, the dying man says how he feels, and his friend is present with him. The friend accepts the dying man’s words, without trying to minimize them or push them away. In the face of death, that reaction seems inadequate. But sometimes, telling and accepting the truth is all you have. I can’t fix a friend’s constant pain, and that makes me feel crazy. I want to help. I can’t help.

In her blog, Emily describes facing, under extreme conditions, the task we all have: making the most of what we’re given as we face an uncertain life. She is saying both I don’t want to live this way and I am living this way. The scared part of me—the part that flatly refuses to consider that severe illness could happen to me or anyone in my family, the part that denies how hard this must be for her—wants to either push her story away or turn it into a simple, easily-contained lesson. Instead, I thank her for her great effort in telling the truth.






Photos: Flowers from my friend Angela in honor of my mom's retirement and also 'just because I was feeling down'. She visited on Saturday, before my anniversary. Fresh flowers are one of my greatest joys--and she completely surprised us! :) BTW, Ang--the flowers pictured are the ones you were afraid wouldn't bloom--they did and they are fabulous!