Sunday, May 31, 2009

a bright burning star is gone

my friend died yesterday, she was only 43. her name is lenea and we have been friends for 27 years. in high school we were inseparable in junior and senior years. neither of us fit in very well in our suburban high school, we didn't think like the rest of our peers. both eldest children, we bitched about our siblings and compared notes on all the ways our parents failed us. lenea had a smile that made your heart melt. we shopped together, went out drinking with fake ID cards and dressed up for halloween. we shared a very strong bond even after high school ended, in fact, she felt abandoned when i left for a year in europe after graduation. by the time i returned, she had moved to the east coast for college. we've had our ups and downs, like every relationship, especially one between two strong-willed opinionated women. uppity women, one could say - in our younger years.

time and distance never changed the love between us. even if we hadn't spoken in months, we could call each other and pick up a conversation right where we left it last time. our friendship brought great comfort to us both over the years.

yet, as i hung up the phone today after receiving the news from her husband, i was flooded with guilt and shame for all the ways i failed her as a friend when she got sick. the emails i left unanswered because i was too busy. i should have sent cards and care packages from the first news of her illness. she should never have to had wondered for a second if i cared for her.

three years ago, i didn't know what it was like to face a serious health issue.

then i got cancer, and a friend i cared about deeply and depended on dropped out of my life completely. i was puzzled, then hurt. hurt turned to bitterness and then later, to acceptance and some kind of forgiveness finally came. i saw that we are all struggling on some level and those struggles can get in the way of being present to others. even, or maybe especially, those we care about the most. being present for a dear one being sick takes courage because it brings to light our own frailty, our own vulnerability to disease.

if she can get cancer, so can i. maybe if i don't engage with the illness, it won't be real.

it took my friend lenea to show me how to get to acceptance. after i seemed to disappear from her life when she got sick (did i know how serious it was? i don't think so. i remember i thought, she is married, she has lots of friends there to support her, she doesn't really need me. months flew by in the blur. the blur of work and worry over the everyday. petty worries. while lenea's life, her fight for life, was 3,000 miles away. i didn't know she was fighting for life, but i should have asked) lenea went through all those stages. her feeling were really hurt and she tried to put me out of her heart, to save her energy for healing. she finally got well enough to write me and express her forgiveness. she missed me and wanted to re-connect, even after i hurt her feelings.

here is a portion of an email from 2 years after she got sick where lenea explains what she has:
"Scleroderma is an autoimmune disease that affects the skin, organs and muscles. It is similar to lupus, however in this case, the body views each component as foreign and wages war. The disease manifests itself in the form of inflammation and subsequent development of scar tissue. When the process affects organs such as the heart and lungs, the development of scar tissue results in a loss of organ flexibility (i.e. loss of function). My lungs were saved and now have approximately 50% capacity and my heart is impaired. All of this means that I can participate in limited exercise and have a modified life style. I am also supposed to restrict the amount of red meat and salt intake. Eventually it may become necessary for me to consider a heart / lung transplant. I am undecided about whether that is something I want to pursue. I believe that in this life there are stars that burn long and stars that burn bright. I would like to think that my star is a bright burner."

today i am humbled and grieved. her heart stopped and my oldest friend is gone from this earth. lenea's last email to me was so cheerful, she reported her health improving steadily and she was thrilled at my acceptance into graduate school. she always, always believed in me and wished the very best for me. it often grieved her to see me struggle in life.

i think of the little things that cause hurt feelings and wedge between friends. there are people i should call. i have too often let friendships lapse and drift away for no reason at all. no good reason, anyway. fear of rejection, a resistance to emotional confrontation, an tendency to be self-absorbed when i am broke or ill.

close friendships are one of the foundations of good health and long life. i've never had a particularly easy time making close friends and today i finally get the truth: i need to keep the friends i have.

nurturing friendships is simply the most important work of being human. what are we, indeed what am i, without my connection to other people?

thank-you, all my friends who read this blog for your kindness, your patience with me and the gift of your love.

today i feel profoundly unworthy and deeply grateful.

Sunday, May 24, 2009

living my story

as you may have noticed, i have not been blogging. sometimes i have this reaction to blogging, that i should just get over myself and stop blathering on about this or that health problem. i wonder if people still read my story, now that it's not all drama and trauma.

i guess the biggest thing keeping me from blogging is just life. i have been living my story more and telling it less. which is a good sign of healing, i believe.

on june 8, i start my first graduate school class and i'm so excited. i have been making some jewelry, as a few orders have trickled in...just the right amount, actually. my patio garden has been occupying many happy hours, both in the planning and in execution. also, my part time job has been more like full time this past month, so i've been very busy doing leasing here at the apartment complex i manage.

perhaps the best thing going on is exercise. i committed to a minimum of 3 days a week in water exercise class and i have been sticking to it. only at the end of this last week did i begin to enjoy it. losing a few pounds has encouraged me and i have discovered that going off sugar makes me feel fully sane, happy and clear-headed.

life in my body is getting better. i feel very hopeful about the future with this body.

even so, i do still have a medical mystery to solve. yes, i have spent dozens of hours researching weird arthritis symptoms and food allergies, to name just a few. when i last wrote, it seemed my mystery was solved. however, after the MRI results came back, my specialist wasn't so certain about the AS diagnosis. so he is sending me on to the gastroenterology department and i am sending myself to an allergist for testing.

personally, my gut tells me this: it's the food.

food allergies create symptoms all over the map. symptoms that mirror my list quite clearly. so i am keeping a food journal, writing down every little morsel i consume, how my body feels and how i feel emotionally. i am only 1 week into that journal process and it's already illuminating.

we will see where this search for answers takes me, my dear readers. perhaps this blog will turn into one about these new issues and discoveries. i sure as hell don't want to be the high-maintenance girl that can't go out and eat because she is allergic to x, y, z, and 40 other things. however, i would do anything (heaven help me, even give up chocolate) to avoid the pain i experienced in march.

that's it, folks. all the news that is, here in my casa. what is new with you?

Sunday, May 3, 2009

the sign says "go this way"

ankylosing spondylitis. that is the verdict from my new specialist, dr. deodhar at OHSU. last monday i met with him and with a few minutes of examining me, listening to my symptoms and reading my family medical history, he said what i have is a classical presentation of ankylosing spondylitis.

so what does this mean for me? first of all, dr. deodhar said i must lose weight and begin to swim or do water exercise at least 4 days a week. i must have regular cardio exercise with zero to low-impact on my joints. yoga is also recommended, although i will begin with a focus on the water exercise for now. slow and steady wins the race...if i needed further motivation to get my butt in gear, well now i have it in the form of a prescription!

i guess it's good news on some level. it is good to have an answer and a direction of treatment to pursue. i still don't know what sparked the attack of acute, intense back pain and vertigo of march, but i do feel they are related. my diagnosis of AS is revealing, but not the full answer on some levels. i hope to gain the answer to that mystery at my next appointment. my x-rays came back without showing degenerative damage in my lower back vertebrae and pelvis, so that is also good news. i seem to have caught it early enough to (hopefully) prevent degeneration.

after all, i want the next 50 years of my life to be active, healthy and full of adventure!

since my last post, i have been bustling around in the studio with orders and busy gardening on my patio. i have a small rose garden that after years of neglect, is finally getting tended, weeded and mulched. i fought a brutal battle with aphids (3,000 ladybugs lost their lives) and have emerged victorious. today, tomato and basil plants are going into pots. a small bed of multi-color sunflowers are being seeded. i have dreams of turning this little patio into a fruitful kitchen garden.

this year, it is an experiment. yet, hopefully will be able to enjoy cut flowers and fresh veggies from right outside my back door in a couple of months.

spring is in full swing. summer is coming, even through the rain, i can see that sunshine on the other side. and i am excited to enjoy summer, my summer of new things.

on june 8, my first graduate school class begins. i am nervous and excited. the summer classes are offered as intensives, so i will have one class everyday 8-5 for a solid week, then it's done. whew! what a way to begin the program. i am taking full time credits this summer, but only actually in class for about four weeks.

so there will be plenty of time to dig into my gardening projects and other summer pleasures. i would like to go blueberry picking and make pickles. and i will be clocking in some hours each week at the ymca, of course.

what does summer hold in store for you this year?