waiting (week three)

It feels strange to be spending so much time away from this page that is like a second home to me. It feels strange not to be taking pictures and posting them, talking about all the good things I am enjoying, and thinking about “what am I going to post on my blog today?” This is the third week of this new life of having a “health condition” and it seems to fill most of my time. I also started working again this week (after not working for over two weeks for first personal reasons, time with friends, and then health reasons). These three weeks have been full of lots of different appointments, physical and emotional experiences, phone conversations, and other stuff…

The first week was filled with illness and pain and fever and fear. Having a fever for over a week does a number to the body. Feeling discombobulated, dizzy, achy, and out of sorts in the midst of not knowing what is wrong with you is something I hadn’t ever experienced. I was also in some extreme pain that was not the usual for the general diagnosis I had been given at that point. I have a new understanding of illness and pain now. I have a new understanding of the idea that one has to fight for one’s own health care. In the midst of feeling so awful, I had to insist someone listen to me—that even though my symptoms were not “usual,” I had to insist that I know my body. And finally, someone did listen.

The second week was filled with doctor’s appointments and waiting and feeling better physically even if some things didn’t change. After the first doctor I met with during this second week was more concerned with more tests and less concerned with how I was feeling, I called my primary care physician’s office and again expressed my concerns about how I was feeling physically. And after lots of insisting and talking and talking some more, I was put on an antibiotic by a new doctor, a woman, who is now my primary care physician. Even though it seems that it is possible that some of these symptoms may not have been connected and I might even have something secondary going on, I have learned that you must call and call until someone listens to you. Luckily, I didn’t have to resort to going to my primary care physician’s office and sitting there until someone helped me. My fever was so high, I wouldn’t have been able to drive myself anyway. After a few days on the antibiotic, I began to physically feel better. After meeting with my new primary care physician, I felt even better because someone was listening to me. Listening TO me.

The third week has been full of a more tests, more waiting, and deep breaths. I had to undergo a test that was to take ten minutes that instead took ninety. I have learned I am slightly claustrophobic (especially when three people are standing over me and I cannot talk or move). This has become a lesson in my biggest fears: not being able to express myself, not being able to control my physical space (and in some ways my physical body or what is being done “to” it), not having any answers, not even knowing the right questions to ask (or even being able to ask the questions), and on and on. And the important lesson of waiting. And learning what is about me and what isn’t and beginning to feel my way through the difference.

On Monday evening, when I was recovering from Monday’s experience of the test that lasted longer than planned, Jon and I watched a couple episodes of House. The same four DVDs from Netflix have been sitting next to our television for several weeks now. I somehow put things into the queue that I simply did not want to watch during this time of resting and waiting. And, House, well, House I didn’t want to watch most of all. I didn’t want to see some patient with similar symptoms as mine suddenly have boils on her body or some scary thing (no, I have not had boils). In the episode we watched, one of House’s colleagues was with an older male patient in the clinic. Suddenly House and three other doctors come into the room and started talking about symptoms and tests and “what can it be?” etc. The patient’s eyes were getting wider and wider until he heard, “but he is only 12 years old.” The patient whispered, “oh, it isn’t about me.”

I started laughing and said to Jon, “that is one of my all-time favorite TV moments.” The fear and confusion and the sudden beautiful understanding. It isn’t about me. Nope. Sometimes it isn’t.

I am sure it may seem odd to some that I am not sharing the specifics of what is going on with me. I apologize if that irritates or seems odd. At this point, this is what I feel comfortable with. When my grandmother passed away, I learned that people share a lot of platitudes because they do not know what to say. And they are also moved to tell you about a lot of their own experiences. And sometimes this is really, really helpful, and sometimes…not so much. Because we are in the midst of understanding what is going on for me…and it might not be a big deal (even if the tests to determine this are a big deal at times, at least to me) and it might be kind of a big deal or somewhere in the middle. Although I appreciate that someone’s uncle’s friend’s sister went through the same thing or the boyfriend of a second cousin had something similar six years ago this Christmas…those people are not me. And so far, I have learned that my “case” isn’t following the usual anyway. Last week, Jon had to listen to someone at his school share horror stories of something similar. Yep. Not so much helpful. I truly appreciate that the way we find common ground and understanding is to share our stories (anyone who visits this little spot regularly knows I am all about the stories), but right now, I am just taking this day by day and waiting. So instead of adding to hope or fear, I have realized that just sitting beside me and nodding and lighting a candle and breathing is what I am really looking for from others. First-hand experiences (like “my wife had this same thing last year” and “I went through something similar a few weeks ago)…yes, those are really helpful and I do want to share that I appreciate those very much.

So Week Three is all about waiting. Luckily it is all about turkey and mashed potatoes and gratitude, too. Even if that makes the waiting longer, it is nice to eat some good food, meet some new people (which is what we will be doing tomorrow), eat some more good food (when we make Thanksgiving ourselves Friday because we want the leftovers and I actually love making it all but wanted to get out of the house tomorrow), recognize the reasons we are thankful…oh and start listening to Christmas music!

get up and do it again {sunday scribblings}

I am someone who is easily captivated by stories of fantasy and fiction. I love stories where someone comes and saves the day. I am on the edge of my seat during Superman and Lord of the Rings and the X-Men movies. I chew off fingernails as I read the adventures of Harry Potter, the Pevensie children, and a feisty fairy named Magpie. These stories are filled with heroes who save the day. Literally. And I eat up every minute of them.

Some of my friends know I am fond of saying that I think almost every story (okay, at least the ones I enjoy) has a bit of A Christmas Carol in it. Someone who doesn’t get it at all faces something, and as the person faces that “something,” the person suddenly gets it. Every year (not necessarily in December), I cuddle up on the couch and watch The Muppets’ Christmas Carol to be reminded of this very idea: A person who seems as though he may never “get it,” he has a story, and we can hope that some day he will be face to face with something that invites him to crack open and get it. (Oh and I also love, love, love the music in this version of this story. If anyone has the soundtrack, I would love to know where to get it.)

It is this realization, this understanding that is the awakening of the hero. I love how this happens in fantastical stories and in stories about every day people. Almost every good story has a character who fits the Ebenezer Scrooge definition. And this is the part where I admit that I believe we have a little of Scrooge in all of us. The ego that must take a breath and realize everything isn’t all about us. That even though our story has brought us to where we are, we make a choice to write the next page.

There is a story by Brian Andreas that hangs in our bedroom above our dresser. It is a framed print called “Real Hero.” It is about the idea that real heroes are people who get up every day and live their lives. I bought this for Jon to let him know that I honor his feelings that life can be hard, hard, hard. That sometimes it can be so challenging that everything seems like it can go wrong. But that the hero inside each of us is what gets us up every morning to face it again anyway.

On Monday, when Jon and I left a doctor’s office, I was feeling pretty overwhelmed and scared. As we waited for the elevator, a woman in a wheelchair was ahead of us. I was so in my head, in my fears, that I could feel myself trying not to notice that she did not have any legs. Her hands were enclosed in leather, fingerless gloves, and she operated her wheelchair on her own.

I believe that the situations we are in are relative to what we know and who we are. So of course, it is easy to think, “well, at least I am not her.” The “at leasts” that fill up space. Although they may have merit, we run the risk of walking a line of pity, which is, for me, a waste of time. Pity. Not a word that resonates. But understanding. Yes. This is what I seek. And, of course, to be understood.

In the five days since the not-so-great doctor’s appointment, I have thought about this woman. No matter her story, she is someone who gets up every day and does it again. And again. And again.

A hero.

I can hope that no matter what life hands me now and in the future, I will try to follow this same path. Get up. Do it again. Go to bed to rest a while. Repeat. And in the midst of this living, I hope when I am face to face with whatever stands in my path that I will be willing to crack open. To let go of the ego that it is all about me and learn. To make a choice to write the next page of my story. And then, yes, repeat.

(to read the writing of others who responded to this prompt, visit sunday scribblings)

if you were a fly on our wall tonight...

"do you see meeko? do you see her? she is way cuter than that guy."
"eek! they are so little. i think those guys are way to young to play this game."
"are you lookin' at her? are you?"
"oh god. totally a tie."
"sorry guys. you both lose points because your humans can't take good pictures."
"yeah, we don't like the hairless ones."
"do you think they have one for dogs? see if they have one for dogs?"

followed by

"that one is creepy."
"oh it's a golden. we have to vote for all goldens."
"no! i like charlie. charlie is C-U-T-E!" "no. those dogs creep me out." "fine...it's a draw."
"that dog has the same name as my grandmother." (long pause.)
"kitten wars is way more fun." "yeah, i don't know why, but you are right."

so back to

"we have discovered that kittens are more photogenic." "yep."
"i am falling asleep now." "just a few more."
"it's 11:30" "fine."

(yes, this is how jon and spent our "late night" friday night time together. first we went to kittenwar, followed by puppywar, followed by, that's right, kittenwar again. good times. go ahead. you will agree. and you too will be surprised how sixty minutes just fly right by!)

poetry, candles, gratitude, and a special day

I am spending time with the words of David Whyte, specifically the poems in his book Where Many Rivers Meet. The first poem in this collection, “Enough,” is the one that I keep reading over and over. It is short, only a few lines, but it resonates deeply this week. A brief snippet from the poem:

This opening to the life
we have refused
again and again
until now.

I have again explored Whyte’s website and listened to him read “The Journey.” Take a moment and go hear him read this poem (just scroll down for the audio file). I read this poem a few months ago and it had one meaning for me. Last night, another meaning was revealed. I love this about poetry. You can take a few moments out of your day to read a poem, and your perspective on life, yourself, a relationship, a moment, the world around you, and on and on can shift just a bit. And the poem might even be an old friend, but it reveals something new to you.

I am lighting the candles I bought over the weekend from Carla’s online shop Zena Moon. The scent of these candles is delicious yet subtle. If you know you like the scent of sage for example, I am sure you will like the candles with sage in them. All five candles (and the one she gave us for free) smell incredible. But the part that means the most to me is that when she makes them, she makes them with a specific intention. So I have been burning the healing candle, and today I will burn the boundaries candle (I am learning that if there is ever a time you need to set boundaries it is when you are ill – may this be one of the many lessons that stays with me through this experience).

I am thankful for the friends and family who have reached out to me through emails and phone calls (and comments of course). It is such a blessing to have someone let go of saying platitudes and just say, “I know this is hard, and no matter what happens, I am here.” Because really, when you are scared about your health, that is all you want someone to say. That and “this just sucks” because it does. From the way I have been treated through this process (by my HMO) to the uncertainty ahead, it just sucks. (But I am happy to report that we have found an incredible new primary care physician. She is listening to me, and her job isn’t “just her job.” She understands that her job deals with people’s lives and fears and health.)

I am blessed to be sharing my life with an amazing man who is my husband and my friend. Today is our fourth anniversary. (Happy Anniversary sweetie!) I sometimes just can’t believe I am married (I really thought I would never marry) and that I am married to someone who is so kind and who truly honors the woman I am and the woman I am growing into. We continue to navigate through communicating as partners and learning together. And through bumps and miscommunication and laughter and care and silliness and love and looking into one another’s eyes, we are finding our way.

gratitude and waiting

thank you to all of you for leaving such kind words over the last few days. it lifts my spirits to know that there are so many people sending me good energy and prayers.
thank you.
we are still waiting, waiting, waiting. another test or two ahead but i am a bit at the mercy of the hmo system at the moment. and that is not at all fun.
i am still exhausted and feeling out of it so more movies and mugs of tea in my future...
blessings to you all...
love,
liz

spending time on a white sandy beach in hawaii...

the first night in seattle with the girls i couldn’t fall asleep because all their voices were echoing in my head. i could literally hear all of them. all of their beautiful voices. and now that we are once again across a state across a coast across a country across an ocean from one another i am wishing we were all back in one room laughing and talking and changing the world. i miss you all and wish you were here.

i am still synthesizing the weekend and all the beautiful, the painful, the joyful, the silly, the difficult, the real, the gorgeous moments.

for the last few days though, my focus has been on my health. i started feeling a bit under the weather Sunday but thought it was nothing (and if i am really honest with myself i have been exhausted for weeks but blamed it on myself and continued to play the game of i am woman i can do anything). by Tuesday evening, after i was back with jon, i was able to finally listen to my body and be honest that something was amiss.

and this is that part where i am wondering how much you share on your blog with people who are kind of strangers yet not at all strangers and important people in your life…i have had a week where i have been told i might have cancer yet probably don’t have cancer yet i need surgery yet i probably don’t need surgery yet i might still need a biopsy yet the doctor i need to see is on vacation so just sit tight until Monday but the doctor is a surgeon so you connect the dots…i have had a cat scan and a reaction to the dye used in the cat scan. i have learned that some nurses can find my veins and some can’t really so now i have to ask them to “cook me” with a heating pad before they even try. i have slept and learned how to stay on top of pain. i have found that you really can catch up on abc shows on abc.com and watched two episodes of ugly betty and caught up on grey’s anatomy all from the comfort of my bed with millie napping against my legs. and even though i had a fever of 101, i have learned i wasn’t going crazy that the democrats really did take the house and the senate. it was nice to have anderson cooper confirm that after my fever went down (yippee). i have learned once again that i am the luckiest “stay at home” editor in the world because my boss is amazing and has made it clear that i am to rest until we know more information. [to have your boss (who is really a friend) say that she wants you rested in case you have to have surgery (instead of thinking i better get all i can out of her before she has surgery) is a gift. and even though it is hard to just let the laptop sit there, i do know that codeine is probably not an asset when looking for comma splices and subject/verb agreement.] i have learned that when the nurse offers you a wheelchair you should take it (or you might bite it in the parking garage). i have realized that having my brother nearby so he could come spend the day is more important to me than i might have admitted. i have seen that i am never alone because my husband, my partner, is with me every step in every minute. a lesson i was starting to realize last weekend and finally have had to see because when i called to tell him i had to have the cat scan right away and was scared he sent an email to the faculty at his school and said he had to leave and that someone still needed to cover one of his classes and the tests were on the desk. just like that. (thank goodness he came because i could have never driven myself home.) i have finally started talking to my grandmother – as i was in the cat scan machine i just started talking to her – knowing that she had several of these before she died…hoping she could help me stay calm. it wasn’t the x-ray that scared me, it was the contrast dye that went through my veins. but now i am talking to her. haven’t heard anything back yet but still, this is one step several people have invited me to try. i have also found that singing IZ’s song about a white sandy beach in Hawaii in my head does help me go to that very place and sit on the beach watching for whales…so go ahead and poke me and x-ray me and prod me. i will be hanging out with the humpbacks.

i will know more Monday. until then i am resting and taking pain meds to stay on top of the pain (my new favorite past time). and drinking mug after mug of tea. and snuggling on the couch in flannel pjs.

(to read more about the incredible long weekend seven bloggers had in seattle last week, check out the blogs of the women i linked to in my last post.)

we walk the same line...

Spending time with some kindred spirits this weekend...

Thea

Susannah

Meg

Letha

Denise

Michelle

Late fall hydrangea blooms (yes, all on one plant)...

a life that is shifting {self-portrait challenge}

An imperfect person living in her life.

I grew up listening to Paul Simon. I have distant memories of Saturdays and my mom stacking several records on the turn table and hearing her sing along. I will suddenly know the words to a song and it is because of those Saturdays and that stack of records. I sometimes wonder how many songs I really know (and how I would not have failed chemistry in college if it had been taught in song).

Back in June, Paul Simon’s newest album, Surprise, was the first album I downloaded onto my iPod nano. And I listened to it over and over again. On an afternoon in June, I pretended for a moment that he was sitting on a stool singing to me. And somehow in that moment, with my eyes closed and my ears and heart absorbing every word, I believed he really was there. And he has been singing to me ever since.

I am still absorbing the fact that I saw him in concert last month because, well, you see, I really do think he is singing to me. His words have hit me in a way that forces me to stop and listen and reflect and navigate a bit differently. And now he is appearing to me in dreams. He is literally singing to me in my dreams now. I wake up and think, “Paul is trying to tell me something else. Better listen to him today.”

Last week, I was listening to the album Still Crazy After All These Years while I was working. The second time it was playing through, I has paused my work and in the deep breath of a moment, I was struck by the song “Gone at Last.” So I played it on repeat a few times and danced and sang and danced some more.

Gone, gone, gone at last
Gone at last, gone at last
I had a long streak of that bad luck
But I’m prayin’
it’s gone at last

With this song it is partly the beat that got me off my feet and got me to pay attention. But then it was these words that had me tearing up in that “oh shit, you so are validating all I have experienced, the crap and the good and the big crap and the fantastic” way. Those tears that prick at the back of my eyeballs because I know I am not alone in how I feel, how I “get it.”

Once in a while from out of nowhere
When you don’t expect it, and you’re unprepared
Somebody will come and lift you higher
And your burdens will be shared
Yes I do believe, if I hadn’t met you
I might still be sinking fast
I’ve had a long streak of bad luck
But I’m praying it’s gone at last

I cannot believe how much my life has changed in the past 18 months. I. cannot. believe. it. And although I believe I was on this path to begin with, I still know that things have shifted. And, it is only because of a broken heart, the deepest of grief, that my path shifted. I know I have written about this idea before, but I just need to say it again and again and again because it simply rocks me. That such sadness could bring such life and meaning to my world. To be given a gift of myself even when the grief claws at me. It is astounding.

In the song “Graceland,” Simon sings,

And she said losing love
Is like a window in your heart
Everybody sees you’re blown apart
Everybody sees the wind blow

I don’t think you understand what this means until, one day you do. Someone asked me recently if losing my grandmother was the first time my heart was broken. And I said yes. But the truth is that is not the case. There have been other moments where my heart hurt. However, this was the first time I understood. That is the difference. When my parents divorced, the pain was deep and confusing, and I didn’t understand. Other moments in my life have been like this, painful but I didn’t understand the pain.

When I stood in that funeral home, in one swift moment I understood. I understood all of it. I understood everything.

I walked into that room as one person and walked out as another version of myself. Though only one piece of my reality had changed, it was clear that this new understanding shifted everything.

Back in June when I closed my eyes and Paul Simon sat on a stool in my bedroom singing to me, the words to “Once Upon a Time There Was Ocean” sang in my heart because I knew the singer of this song understood this idea. Understood me. And so began my love affair with the poetry of Paul Simon’s lyrics.

I figure that once upon a time I was an ocean
But now I’m a mountain range
Something unstoppable set into motion
Nothing is different, but everything’s changed