Friday, September 8, 2017

Perspective

I traveled this past weekend. For the first time, I walked into the house I'd known for more than 20 years and knew I'd be taking keepsakes, momentos, pieces of my history.

There were books, and a statue, some tea cups (yeah, I know it's weird) that I wanted. Pieces that held little to no monetary value but ones I had cherished. In some cases, I felt child-like awe returning as I handled them with extreme care.

The pictures were at once both the hardest and the easiest. I took the school photos that documented the march of time in my life, as well as two images I copied.

One was my father, in July of 1984, swaying in a hammock on our farm. He looked relaxed and playful. I've always loved that image of my father.

The one I cried as I took from its frame meant the most to me. To a casual observer, it looked like a little girl pouting as a mom chuckled, cajoling the child into something.

I am not the casual observer. I know what's happening in that image.

My adoption made me feel like an outsider. I lost a lot of the confidence 4-6 year old children often have, knowing that my parents were, and weren't, my "parents" in the usual sense. I grew up terrified that if I did anything wrong, I'd be taken back to where I'd been. Returned as defective, or unwanted.

My Mother was an incredibly intuitive woman. She and my Father had taken in many foster children, but they'd adopted me. Somehow her empathic nature told her that my insecurities needed unique reassurance, so she devised a game.

At the camping grounds where the image was taken (around 1987), I would race ahead and sit on the large rocks lining the path to the bathrooms. I would pretend to cry and be sad, all the while my parents making their way up the same path. When they reached me, my Mom would ask why I was crying. I would say I was lost, and didn't have a family. My Mom would say that they would love me and keep me forever, and we would agree to keep each other forever before bundling off to the bathroom together, hand in hand.

My relationship with my Mom and Dad was ironclad, and by my twenties I looked like both of them. I somehow managed to develop my Mom's voice over the phone. But looking at these images of the two people who took such amazing care of me, who raised me and taught me all they could - I hope a tiny portion of the legacy of love and compassion they left behind lives on in me. I will forever be in awe of the lengths my parents, particularly Mom, went to so that I could feel safe and loved. There's an incredible power in that kind of love.

Sunday, July 16, 2017

Island Scenes, Mountain Retreats

There are things that keep me awake. I can't keep having the same dreams. Too much passes for reality when my eyes are closed. Faces, ghosts, memories... my restless mind combines so much, and I find more solace in the dark of night than I do in my sleep. JK Rowling had plenty of inspiration for the Mirror of Erised in dreams. 

It's late, again. Thoughts wind back to the conversation earlier in the day - the dichotomy that provides me comfort, the yearning of my heart to split my life between cold snowy mountains and a quiet, desolate beach. My daydreaming (night dreaming?) keeps creating scenes, moments that I could dwell in forever. But, as cautioned, it would not do to dwell on dreams and forget to live.


***


For a moment, though I don't know how long it lasts, I'm walking on the beach. It's late - the bars and clubs are expelling their caches of the drunk and lusty. For a span, I am swallowed in the humanity as pairs and singles as they wash the soundscape in intermittent beats and the murmur of determination. I meet no eyes, I find no conversation pulling me. I am a ghost amongst crashing waves and chilling breezes, unbidden and unwelcome in my otherness. My skirt is long and skims the tops of my feet, my hair blown and battered by the fingers of my companion the wind; even the most amorous of couples are bypassing the dunes and hiding places for some other den of lust tonight. My lips curl in recognition, a smile for remembered beats and rhythms when I danced myself to pleasant oblivion years ago. 

I give privacy to the retreating humanity; they are on a journey different from the trail I walk tonight. I am in search of something they would not value, even if they found; the same could be said if my feet found me walking anyone else's road. I taste the salt on my lips from the ocean spray, and watch the changing colors of surf as it sighs itself in and out. The sand is still warm under my feet from the day's sun. The women who went into the clubs without jacket or sleeves are surprised by the cool night's breath. I chuckle at the sounds, words shapeless as they reach my ears, expressing surprise. They cannot see what I do; I leave them to their own devices as I am left to my own. 

As the sounds ebb, the tides stubbornly come in. My path veers further inland, avoiding the tips of the surf's fingers as they reclaim bits of the beach. I shrug my shoulders, wrapping my hands in the cuffs of the shirt extending to my thumb. There's a storm offshore. That explains the edge to the breeze, the way it shifts the trees and tousles my hair carelessly. I needn't strain my eyes to find safe passage in the night. I can see forever in the moments lightning touches salt water. Even if the shower reaches my deserted haven, it might wash away any tears that fall and such friendship should not be turned away. I will cry myself comforted in the falling salt water as its ultimate destination stands judgeless and vast. I will find peace between the rain and waves.

***


Deep breaths carry evergreen and cold to my nose. I find myself wrapped in the silence of the world as it gathers itself before a storm. My boots crunch the crisp, established snow. I think another blanket will fall soon. I listen to the few leaves determined to hang on hibernating limbs, protesting another bout of rough treatment I would not spare them. There's a name for the silence that comes with a snowstorm - it escapes me as I smile into the dove grey underbelly of the threatening clouds. The path remains in my mind as I see the first large clumps of crystalline ice tumble onto my trail. I know the way without thought, without directions. That does not stop my breath from catching. Somehow I am home again, known even in my solitude by the wind and weather. Unyielding ground beneath the snow strains to touch my shoes, to reassure me that grass and tree wait to rise when the time permits. This is my reset, my chance to let loose my hidden breath. I can find my pace, hidden among the evergreens. The heavy sweater under my parka, the boots, even the hat I wear are no barrier. 

I don't spin. There are catches of a song on my mind, calling from the depths a ship and its captain as winter waves beckon. No snow angels, somehow an affront to the temple in which I wander. My reverence tells me that full-throated song is disrespectful in this space. I learn my own stillness in this cathedral of whipping cold and spiraling fractals. There is a place for the geometric precision of each array of angles, the alignment of water and imperfections tumbling to me from heights I do not imagine as I watch them gather on my eyelashes. Melting into my ungloved fingers, the touch of delicate chill followed instantly by pooling water calls to me. It sings of the stillness I may borrow but do not own, the pristine beauty this place holds without any of the scars, the damage of learning and living. As the dripping former snowflakes invade the warmth of my sleeve, I recall the trek back to hearth and home. My journey will have been better for these steps caught in the storm, instantly obliterated by the falling fluff. I will curl into an oversized chair next to the fireplace, a book awaiting my attentions as tea steams in my cup. I'll listen well to the rare thunder that accompanies some snowstorms. I'll smile as its deadened rumble recalls the rain it had been at lower elevations, warmer temperatures, and I welcome its changed touch on my lips, my eyes, my mind. 

***

I can't explain why both ideas swim with meaning and value in my mind. There's so much about each that is inexplicably real to me. Part of it is my own memories of less idealized moments. Some of my life is wrapped in holding such moments, finding instruction and comfort in the vividness of such moments. It is remarkable the lengths to which the mind seeks comfort, refuge, peace. There are such different tactile experiences in each, their differences of primary importance to me. 

So I'm caught somewhere between jagged mountainscapes and shifting sandy seascapes. Needing both, missing both. 

Tuesday, July 4, 2017

Absence

"In a minute there is time
For decisions and revisions which a minute will reverse."
~T.S. Eliot, The Love Song of J Alfred Prufrock

When we last left our heroes, there was a new year barely 3 months old and a world of change ahead.

Today, precisely, is 3 months before my 35 birthday. So much has taken my breath away since March of 2016. So many great gains. Such world-stopping changes, losses.

It has been 6 weeks since my Father passed away. Almost a full year since the surgery that removed his lung cancer and the following month+ of downturns, near-death ICU stay and slow, persistent, less-2.5-toes recovery. Watching my sister worry until she couldn't sleep, finally getting brave enough to travel to be with them and feeling relief as they all improved. Spending Thanksgiving with my Dad, and marveling at his determination. Fighting to find time to be with him around his birthday. And being with him in the last days, that no one knew were his last. Watching "The Magnificent Seven," and its remake. Watching "El Dorado." Talking about John Wayne. Holding him as he passed out in the living room. Trembling as I called my sister, feeling helpless for the first time in a medical situation because regardless of how much I understand about medicine, I couldn't make sense of what was going on. This was Dad - my Big Sister's best friend, and the man who cried when he dropped me off at college when I asked if I'd still always be his little girl. Bob, who adored my husband and checked on Jon more than I knew, particularly after Mom passed away. Mr. Invincible, whose stoic and bullish presence in my life kept me grounded, and I bit back every inch of my political ideas so that our time together could be happy. It was selfish, and small, but I wanted to just enjoy the time we had left together, however long that was. The only thing I would change would be to have my sister at our side when we held him before he passed. I was closer to my Mom, and I would have given anything and everything I have to let my sister hold my Father's hand to say goodbye just as I'd had the opportunity to hold Mom's. He loved us. Imperfectly, impossibly at times, but loved us just the same.

I've struggled with the pain of losing him. More than that I've felt mystified by my relief - a breath held I did not know I was holding - knowing that he wasn't alone, that he had loved ones around him constantly when he went.

It has been 15 months and 1 week since my friend and sister, Melissa, passed away. Unexpected. Completely. I'd spoken to her every day for so long. She was a bright light in a weary world, and in each other we found safe passage. She was the quintessential older sibling; she knew when I was screwing up and would patiently tell me exactly why I was being an ass. She also let me be devastated without the nagging echo of "I told you so," or the disappointment of misplaced hero-worship. She saw my flaws, and let me stand beside her even in the face of them.

It has been 2 years and several weeks since my Mom and older brother passed away, within weeks of each other.

Even in the face of these scars, beautiful moments and new friends have brought love into my life. I've had magnificent moments, spectacular adventures and quiet restful evenings. I've learned more every day. My health is stable, which is a small miracle. I fight every day to keep it so.

I've seen one of my favorite people marry her long-time love. I've had an afternoon/evening as Cinderella. I've dyed my white hair a tanzanite purple-blue. I have started wearing thermal nail polish so I can tell when my toes/fingers are colder than they seem. I laugh too loudly. I kiss my husband in public. I'm reading Harry Potter for the first time, after 20 years of resistance. I am looking forward to once-in-a-lifetime memories with once-in-a-lifetime people. I am planning a dinner for friends. I'm watching movies in theaters again. I am writing again.

I'm still here. At a moment my world can change; in a second it will change again. But I have lived, up to now, and I will make even more memories in the days, weeks, years to come. I will have a rich and varied life to look back on, and I am grateful for all in it.

Tuesday, March 1, 2016

... and Many Happy Returns

We all have little traditions for special events.

In my family, you always got to pick dinner on your birthday, and if it was feasible, you got your favorite flavor of birthday cake. Or, icingless cupcakes... or whatever weird thing creeps into your brain, like a bowl of spinach instead of ice cream (yes, I preferred spinach as a late night snack as a kid).

March 2nd is my Mom's birthday. She would have been 72.

It's been difficult for me without my Mom. Lynn was a force of nature, fiercely loving and loyal. She filled the room with her laughter, or biting sarcasm. She raised so many people - foster children, friends of her own children, grandchildren... My Mom loved so many people who loved her without reservation or restraint - I wish I could tell every one of them how much she loved them, because she talked about them all with love, and hope. I am so proud of that; she loved with such energy.

And yes, she sucked sometimes. We butted heads more than once, and had to have a 'Come to Jesus' discussion more than once about what our relationship was, and how it was going to work. We hurt each other, without ever meaning to hurt each other. My Mom wasn't big on saying "I'm sorry," but she would go out of her way to make sure you knew she still loved you.

My Mom was my template for strength, and grace, and love. Sometimes she took my breath away with how absolutely perfect her comfort fell like a blanket over my heart. She was a Best Friend, and my biggest fan.

I celebrate my Mom every day. I talk to her every day. Sometimes, I have the best dreams - simple ones, where I'm sitting in the kitchen with her and we're talking about nothing special. Those are the times it takes me a moment to gather myself when I wake up - but I know I smile a little more those days, and feel comforted.

So, March 2nd, I remember the piece of my heart that was so full for 33 years. I was so very lucky to have Lynn as a mom, a friend, a confidant.

"It has been said, 'Time heals all wounds.' I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone."
~Rosemary Kennedy

Friday, January 29, 2016

New Scars

Wednesday, at approximately 9:00 eastern standard time, I had surgery to remove a tumor.


You have a thyroid gland in your neck. It wraps around your trachea/esophagus (air and food pipes) like a butterfly. There are four smaller glands, about the size of the end of a writing pen, that are called your parathyroid glands.


The parathyroid closest to my jaw (rather than my collarbone) developed a tumor. Normally, when this happens, doctors go in on the side of the neck and remove the gland so the other three can work normally.


My thyroid has been severely damaged by all the attacks from my immune system. This made the anatomy in my neck differ from normal necks.


My tumor had been growing for so long, it drooped down. My low-hanging tumor pushed itself around my throat, trying to determine where it wanted to keep growing.


My surgeon is the head of surgery at the hospital where my surgery took place. I'm grateful that I had such a seasoned crew.


The following are exact quotes from my surgeon, post procedure. "That was a huge tumor. We almost didn't find it. I was about to give up and take the inferior (lower) gland, but I saw something way in the back. It was lodged between your esophagus and your spine. Most people would have given up a while ago. But we got everything - when we started, your parathyroid hormone levels were over 400 - after we got the huge tumor out, you immediately dropped to 80. That tumor was HUGE!" Typical parathyroid tumors are about the size of an almond. "Yours was gigantic. We started just below your right ear, and hunted until we found it - it was bigger than a giant olive!"


I have a four (or so) inch surgical incision at the base of my throat. I've already noticed differences in drinking, eating, swallowing and my voice even sounds a tiny bit different!


I wish I could say this has been an easy recovery - the pain has been some of the worst I've ever had. Including the colon removal. Turning my head is not allowed, leaning my head back is peril-filled. Bending over threatens all kinds of danger.


Jon has been helping me so much. I hate being a burden to anyone, but when talking on the phone for 15 minutes exhausts me (it was worth to talk to you, Melissa), I don't trust myself to be alone for long periods of time. My balance is not solid - I would flinch if I fell and you'd be amazed how many neck muscles running directly under my surgical scar are required for catching yourself when you slip.


I'm not sleeping well, and I'm hopeful that as I continue to heal, more rest will come. Having a raw throat from the tube they put in to keep you breathing during surgery does not pair well with a healing surgical scar. Inside and out, my throat is unhappy.


I am grateful for all the love and support. Having aunts wave me off and promise to keep Jon in line was a sincere relief. My mother-in-law has been checking on me every day for the past two weeks. My dad and sister are cheering for me, and the family I got to pick (my closes friends) have been magical. Even long-distance loves like my cousins and Aunt Rachel have been a vital portion of my cheerleading section.


Thank you with all my love and gratitude for the wonderful cheering squad. I was more scared about this surgery than any other. It's been a far more difficult recovery than I expected. Hopefully I can rest enough, and get my healthy legs underneath me. Looking forward to more rest, and healing. I think I may stock up on scarves for my neck, though. Feeling a lot like the Monster from Frankenstein's lab isn't my idea of awesome.

Tuesday, January 5, 2016

One Hell of An Example

Today has been the perfect, breath-taking example of what my life means now.


8:00 am - seeing a doctor. I was told it was a quick follow up. Half an hour, maximum. I go into the appointment daydreaming about what I'll be able to accomplish at work today.


9:00 am - I'm exiting the appointment, being ushered to the "set up" window. I'll be setting up the laboratory tests that have been ordered, so we can explain what I thought were normal, not worrying symptoms which now have raised The Eyebrow of Concern. Great.


9:15 am - The doctor I haven't been able to get an appointment to see is called. His staff apologizes for my inconvenience. I am given an unexpected appointment this afternoon, at 4:10 pm. I'm also given a second appointment this afternoon. It's starting to dawn on me that my day at work is gone.


9:20 am - I'm scheduled for a CT Scan on Friday. With contrast. In the middle of the day because that's all they have. I'm given the prep (barium), the instructions, and wished well before I'm sent to get my laboratory testing.


11:30 am - I'm sitting down, trying to remember who else I need to call, or text, or whatever. I have to take Phenergan (anti-vomit medication) because I've been swallowing, trying desperately not to throw up. I am aware that I will be asleep by 1 pm, but I will not be driving at that time, so I'll be okay. I drink water, have some popsicles and try, in general, to settle down my stomach. I'm not winning.


(other appointments you really don't want to know about)


4:10 pm - Checked in, sitting quietly in the waiting room, taking notes from my day. I'm not seen until after 4:30, but that's not terrible. The Doctor was more personable than usual. He raised The Eyebrow of Concern, after realizing I've been missing for 6 months. He explains that he wants to perform a twilight anesthesia requiring procedure, because he's concerned about what's going on with me. He's coordinating with my liver specialist, and will be forcing me into his schedule this week. THIS WEEK. This week.


ADDED BONUS: I have been presented at Cleveland Clinic as a "remarkable" case. Per my endowed chair of a physician: "Jess, you are an outlier. Completely."


I did not get home until after 8 pm. I've submitted paperwork for my job, done ALL the dishes in the kitchen and had a shower. I am ignoring all other adult things at this point because my ability to cope is gone and I do not give a damn.


I will not be able to eat until this weekend, except for popsicles and juices and jell-o and air. I'm not happy about it, but I'll take it as easy as I can if it helps keep me out of the hospital after all this irritation. I anticipate sleeping through the weekend.


This is a normal week. This isn't even a BAD week.


This is my life.

Friday, December 11, 2015

My Letter to Santa

Dear Santa,


It's been a long time since I've written to you. I wouldn't write you, but I think we need to talk after the last few years. Time seems to always be a friend to you - I hope 2015 has been no exception.


What a year! The list of things I am grateful for grows stranger every year. Doesn't make me any less thankful, though.


I can't ask for much this Christmas. I could write you about the obvious things I'd ask if I could have anything in the world - another Christmas with my Mom, and my brother; fewer complications; more answers to medical questions; less pain; less costly medicine. I could ask for a body that isn't falling apart, or organs that are more stable than the ones I have.


I'm not going to ask for those things. In some cases, I don't want to know what the alternatives are. If my Mom could be here, but she'd be in pain I wouldn't wish that on her. If my body was 100% healthy, but I wouldn't have my husband, I'll take what I have.


Please don't mistake this as a bragging letter, Santa. I'm basically a coward - I am more comfortable with the known than the unknown.


That kind of leads me to my request for this year. Santa, if you get the chance, surprise me.


You got me right, Santa. I want an adventure. My life, hopefully, has been about satisfying a level of curiosity often drummed out of children by the time they're 10. I adore learning, experiencing, adventuring. I want to keep seeking out new information, new places and people, new horizons.


I know I'll be adding to scars in January of 2016. I know there will be a lot of hard moments in 2016, just as there are in any life at any given time. I want to add other things too.


I want to add memories I'll cherish forever. I want to add delight to my friends. I want to add quiet moments of support and kindness to the people around me who need calm, a safe harbor from the raging squalls of life. I want to laugh uncontrollably, I want to feel unabashedly happy and I want to share all of it.


Santa, I would ask for selfish things if I thought they would help. I would ask for my scars to become less hateful in my eyes. I'd ask for my organs to hurt less, and to stop the swelling/ edema all over me. I would ask for a replacement for the wedding rings that have to be cut off my finger because I can't remove them anymore. Honestly, though, I'd rather have a walk by the lake with a hand to hold and maybe some fire-roasted marshmallows.


Santa, send me friends throughout 2016. Send me faces I love and miss, lifting up my soul. Send me great books and great food. Help me dwell in the best parts of 2015, and help me heal the torn pieces too.


I know you have a lot on your plate, and I certainly want all my family's wishes fulfilled. I hope you can work on my request, but if that doesn't happen I'll understand. I cannot ever express how humbled, how thankful I am for all the wonder and magic my life has already contained.


Travel Safe, Santa. My love to your reindeer, Mrs. Clause, all the elves and yourself as well.
A Big Fan from Way Back,
Jess