Thursday, August 25, 2011

the difference between calm and numb

Therapy came not a moment too soon.
I was thoroughly unable to formulate a sentence without weeping. And I no longer had to. I cried. About everything.
I talked about my uncomfortable body, poked at my bruises and abrasions... acknowledged my tired body's inability to stuff my tension in the usual ways. My shoulders are too weak to be stacked with anxiety and fear. They are too gelatinous to serve as the usual sturdy gleaming armour, able to buck off all attackers and casually shoo away the onslaughts. There is no tough exterior. I feel much like a crustacean plucked from it's shell. Gooey and terrible vulnerable to attack.

I wept, and I wept.
"It all happened so fast."
"What do you mean?" my therapist asked with an incredulous smirk.
"I just decided to do this, and I went in and did it. And now it's over."
She reminded me of the long testing process I had endured since February.
"I know," I continued, "I know I didn't really need to think about it. I decided to do it and I was never unsure. But I never felt much of anything about it."

I recalled a conversation we had just prior to my surgery, in which she assessed my typical stress tolerance. "With all of your trauma history, and everything you've been through in your life... things that most people find stressful are just not stressful to you. For God's sakes you work in a prison." I agreed that my everyday existence is often much more stressful, high-drama and high-trauma than that of most. She asked, that day, if anything is "too much" or seems unmanageable to me. I thought very carefully, unable to identify anything.

Today I acknowledged how odd it was that I had felt so very little prior to my surgery.
"Sometimes it's hard to tell if you're calm or if you're just numb."
I acknowledged that my feelings and behavior were certainly not normal, and that I walked into surgery with no trepidation, no anxiety, just a serene feeling of calm.
Was it...? Was it a feeling of calm? Or was it just... feeling... nothing.

"I think I feel a little mourning," I cried, "For all the things I didn't feel beforehand."
"A part of me is gone," I wept in sadness with a smile, "and it's out there in someone else... doing what it's always done. And it's so wonderful and it's so... weird. It's so weird!"

I had remarked prior to surgery, within this very blog and at several other points, that I never expected the pre-surgery portion to be so emotional. And I didn't. There were copious tears. There were extreme feelings of distress and abandonment and alienation. And all of this - these reactions to the changes within my own relationships - I felt very deeply, and I acknowledged and understood.

What I did not understand is everyone didn't feel like me. I could not wrap my mind around why I was the alien. Why people just weren't "getting it." I did not understand, in some ways, what I was walking into. I did not understand what perhaps these people did. I did not understand that I should feel anxious.

As I laid in a miserable puddle of pain and tears on coarse, alienating white hospital sheets, I started to get it.

I really am insane
, I thought silently. This is not normal. I am not normal. Who does this!? How could I misjudge someone else for not being as bizarre as I? For being, obviously, more normal than I.
How could I judge someone for not wishing to endure this misery? For not wishing to have their abdominal muscles severed and a vital, healthy organ removed? Having never experienced surgery, my therapist was right in pointing out that I didn't expect or understand how vulnerable it makes you. The fear it brings. The ways in which it simply violates you. Fear of this, wanting to avoid all of these things, is terribly... terribly normal.

My lack of fear for these things was, I imagine, abnormal. Or perhaps just naive.

But now I have felt crazy. I have felt "nuts" and just plain wrong. I have felt as though I was looking in on myself- as an alien. I have felt self-assured and self-righteous. I have felt frail and frightened. I have felt calm. And I have felt numb. I have felt nothing.
Right now I'm feeling everything.

Wednesday, August 24, 2011

weak in the moment

Nine days without a left kidney.
This is the first I've been able to write, apart from a misplaced "remember this:" scritching on a napkin or envelope.
Everything makes me cry. And not tear up, cry... everything feels as though my soul is welling up in my chest and leaking desperately through my eyes. Everything feels desperate. So overwhelming. So intense.
Holding a computer to write while supine is a struggle. My stomach feels pressed even when it is not.
I just want to write some notes.
"Every time I touch myself," I tell Courtney," I find a bruise or knot or something gross or sticky or some tape residue or something."
"You're not supposed to touch yourself."
"Har. Har."
I now see why they didn't want to shoot Heparin into my tattoo-covered left arm. My right bicep and tricep are dotted with burgundy red spots followed by comet-tails of deep purple, expanding in size. The painful stinging injections came every eight hours.
In the past nine days I have felt so weak and vulnerable. So tired, sad, sick and scared. I have felt fearful and hopeless and, I admit that in my worst moments, even regret.
I was pondering "altruism" and what it means to give of yourself. What it means to help when you don't have to. To do things that are good even when you seem crazy (and yes, to myself, I do now seem insane. I'm on board that train. This was insane). I was pondering, from my cold hospital bed, what all this meant when a little voice that was not my own said to me very definitively: "this IS altruism. It fucking hurts."

Right before this I was pacing, clutching a rolled up "pillow" of taped together towels to my incision site. I finally pressed the call button and asked for my nurse. Having had the day's only pain medication about two hours prior, my pacing and sobbing in pain made no sense. "It just hurts so much!" I wailed, begging her desperately to help me. She agreed that this must have been due to the frightful opiate-induced constipation I had been experiencing since my surgery 7-days prior. I could feel things moving about inside me, "but nothing will move!" I wailed.
The nurse asked if she thought I needed a laxative suppository, and I sobbed pitifully, vulnerably, "I don't know. I've never had that." "I know," she said gently, "I have and it will be okay." She asked my to lay down on my left side as I continued weeping. At that moment I felt very much the way I imagine a new-born kitten to feel. Weak and blinding, wailing for comfort. Unable to feed or even poop for itself. So fragile, able to be completely crushed lifeless with a single squeeze or harsh step.
"There," she said, snapping off a rubber glove. "Keep that in for as long as you can and in 15 or 20 minutes try to go to the bathroom." I continued weeping, not moving, peering at the clock on the wall at the foot of my bed.

Finally. Finally I went to my bathroom and removed the little urine collection "hat" that sat mocking me in the toilet and placed it carefully in the shower, and finally.. things started to get much better.
After a long time and I had finished, I returned to my bed and resumed my weeping. I was unsure why, but presumed it must have been from relief. I thanked God, apologized as I always do for being out of touch, and asked for his hands on my very broken-feeling body.
Two days after I awoke to find this morning... a beautiful day and a happy black dog waiting for my attention. I took a long hot shower, attempting to lessen to pain in my back that is now entirely without chemical assistance.
I put on my robe and socks (I've been in New England far too long... it just took me three tries to spell socks without putting an "x" in it), and slowly shuffled back to my bedroom like a crippled old woman. Imbued with a new hopefulness and fortitude, I wanted to throw on my clothes, run down the stairs and out to the sidewalk with my dog. I sat and faced my dresser after choosing a couple articles of clothing. I sat, underwear around my knees, and picked the purple glue from my incision site, examining it carefully. I listed to three days worth of voicemails, including several minutes from my mother regarding the dietary solutions for constipation. (As she was leaving this message, I was in the bathroom at the hospital finally finding relief)

I looked around at my dirty room in disarray and recalled the sweaty, vomiting desperation of Sunday and my ambulance ride with dear Sarah. The sweet girl who has been dating me "not seriously" for about a month, found herself in a terribly serious situation when I couldn't stop the pain, the weakness, the vomiting on noon at Sunday. I finally, desperately asked her to call 911 and paramedics arrived within minutes. As I wept pitifully, a flurry of EMTs and firefighters told me how amazing it was that I had donated my kidney the week prior - and to no one I knew. Time and time again, this part was particularly amazing. The men were kind and thoughtful. As I cried softly, my insides being tossed about like a salad in the ambulance, the EMT remarked, "wow... this really makes me want to pay it forward. I feel like I should do something for someone. Do something with my life." The firefighter to my right agreed. I shook my head in surprise. "I'm sure you guys are doing okay." The firefighter joked, "Nah," he said pointing. "he's saving lives. I'm just putting them at more risk."
Maybe everyone always feels like they're not doing enough to help. There really isn't "enough" for some of us, is there?
At the hospital, I experienced the worst pain of the entire kidney-removal endeavor when the ER nurse attempted to insert a butterfly needle. I squeezed Sarah's hand hard until she stopped. She asked that I remove my clothing and I asked Sarah's assistance in doing so. After we sat in silence for a few minutes I remarked, "this isn't really "Craigslist casual," is it?" She laughed.
"Well you didn't post in the "casual" section."
"I don't know what section I did post in, but I'm not sure it covers this." Again she laughed and squeezed my hand.
We laughed about the people we could hear talking about me in the ER. Countless times someone would say, "just last week? She donated her kidney?" "And she didn't know the person?" "Wow." "And it was anonymous?" "Oh I don't think I could do that." "She didn't even know them?" "No, I'd never do that."
Kate would later ask about my relationship with Sarah, and whether it was weird to be in such an intensely vulnerable and intimate situation with her. I expressed my tremendous gratitude for her. I joked again about craigslist and noted that perhaps I should have posted in some "over-65" forum where I might find someone who can "knows the names of my doctors, can take off my clothes in the emergency room when I can't, knows to pack up my CPAP machine, etc... someone who enjoys short ambulance rides and slow walks around the block. Oh and sunsets."

Though I'm still weepy and feeling weak, Denise (the transplant coordinator) says I'm "turning the corner" and will very soon be in tip-top shape.
So for now I have waves of nausea. I have an arm that looks like it's been pelted by a BB gun. I have purpley-glued incisions on my swollen chubby abdomen, and an insistent burning in my left shoulder indicating trapped CO2. I am continually overwrought with emotion over the largest and smallest of things. I have happiness and worry for the fate of my now out-on-its-own kidney... and I have felt shame during the dark of night, when I have thought, just for a moment, "Why did I do this? What was I thinking? Was this a mistake?"

But as I reminded myself in a conversation earlier this evening, it's been all pay-out thus far. I've yet to reap any of the emotion benefits of this gift. Thus far it's been only pain and suffering.
Here's to altruism.
It fucking hurts.

Sunday, August 14, 2011

bigger things

It has seemed curious to me how very typical my train of thought is this evening. I thought, perhaps, my mind would be on "bigger things" and to-be-expected worries. Indeed my calm has continued through today, to an almost bizarre degree, but it has not removed all the typical thoughts and worries from my head.
I am not considering the odds that I may die tomorrow. I am not in fear of the pain I will be in when I awake. I do feel a tinge of angst when I think of my recipient, and the chances of his success. But overall, I am concerned with the things that I so often consider to be "petty" fears/worries/self-conscious wonderings. Perhaps they are not as petty as I consider them to be.

In truth, I know they're not. I know that the things that occupy the most space in my brain - my relationships - are actually the most vital aspect of my existence. I call them petty in an effort to hush my needy, tireless brain. The tactic works poorly, only serving to add guilt to pile of things tiring me.

I guess there is a lesson in this.
There are no bigger things than the things that occupy our hearts, no matter how important or petty we judge them to be. There are no bigger things than the trials of our everyday lives. Today, all we have is the everyday.

I wonder what thoughts occupy his brain this evening...

Saturday, August 13, 2011

the process

Earlier in the day I realized my odd sense of calm.
All week, particularly yesterday, I have been flooded with emotion. Perhaps no more than usual (and I have only been better at taking note of it), but flooded just the same. I catalogued the anxiety as it wrapped clammy hands around my intestines and throat, making my shirt collars feel suffocating. Took note of the brief tinges of worry I felt when allowing myself to consider the boy and his battle ahead. Bowed my head to the heartache, confusion and grief I have felt at the mercy of love, love witnessed and love lost. I have felt worry and shame. I have took note as vulnerability struck me and left me feeling helpless, a lump in my throat. I have reveled in such blinding joy. The kind that leaves you breathless, wordless... brings tears to the eyes. I have felt sublimely content and been surrounded by friends.

Though I did not speak it aloud, in my mind I lifted a glass in toast.
I have every assurance that Monday will be a great success, and I will be no worse for wear on Tuesday. But if tonight were to be my last night on earth... there is nowhere, no way I'd rather spend it. I have never been so happy. And I have no regrets.

As I enter my final day before surgery I take notice of the calm. The rain has ceased falling and my mind is a placid ocean once again. Unconcerned. Thoughtless. Feelings numbed but awareness intact.

I lay back and... for once... maybe the only time... I find it frightfully easy to think about nothing. I breathe as my eyes shift, taking in the room. The calm is surprising. Welcome. Comforting.

God willing it will last another 31 hours.

Sunday, August 7, 2011

in just a few days...

I can't believe it's really happening. And in just a few short days! When I began the donation process, I imagined that surgery could happen as soon as July or August.
August 15 is my date.
When the transplant coordinator, Denise, called me at work to tell me that my donor had been identified, ("It's a boy, that's all I can tell you" she said) and that surgery could be a week from Monday... my heart sped to a million miles a minute. I smiled so hard and my chest swelled with such joy that tears came to my eyes. I rambled to the psychiatrist, the only one still in the office. I grinned like a fool and gasped for breath. "I can't tell if I'm finally nervous or just incredibly excited!"
It's such an honor, I told my therapist the next day. Such an honor.
I have been struggling to write everything I have wanted and needed to write... instead usually sitting in silence, blanking out, distracting, or writing about something entirely different. Everyone asks me, Are you nervous? Are you scared?
I'm not nervous... not about the things I "should be" anyway. I am not at all nervous about the surgery. I'm anxious about getting all of my obligations at work fulfilling. I'm anxious about getting enough PDO to take the time off and be paid for it. I'm nervous about this "boy" and how his body will come through the surgery... and if it will be adequately attached to my healthy kidney when it does. I'm anxious about organ rejection. I'm anxious about writing, and how imperative I feel it is to express this as emotionally and definitively as I possibly can. How crucial I sometimes feel it is to freeze the moment and remember every infinite detail. How overwhelmed I am by all the intense emotions that I feel.
My therapist remarked that she had never seen me feel such joy. "I want you to feel joy more often."
I asked her to imagine the last ten years of her life... all that has happened. All she has seen and done. The places she has gone and things she has tried. The people she has met and loved. The ways she has grown. I asked her to imagine being able to give that time to someone... as a gift. No strings attached.
"It's just..." I shook my head and widened my eyes.
I tried to find words but I couldn't. My eyes welled up again and I felt so, so grateful. She nodded and used my words to finish my sentence "...an honor."
I am so lucky to be able to do this. I am so lucky to have this health, and to have this willingness. SO lucky to be able to give something so big- that could never have a pricetag or be wrapped in a box.
And it is something that is so very, very small in the scheme of suffering in the world... it makes such a small dent in the pain and death and hurt. But it is still something so much bigger than me. A very small token that I can give, in good faith.
I didn't anticipate the emotions I would encounter during this process.
I have felt unspeakable joy. I have felt hurt, betrayed, and alone. I've felt abandoned and completely alien. I've felt lucky and humbled. I've felt an urgency to live my life and love every moment of it. I've seen colors just a little bit brighter and tasted foods just a little sweeter. I have felt just the same as everyone. And very, very different from everyone.
I hoped that through this process I would feel more connected to humanity. More "a part of" something. More like all the others. After all... on the inside, I am just like all the others. I have the same insides. Insides that work like everyone else's. Or, at least the way everyone else's should.
Only in the past days have I felt this. I think it is coming.
Will I miss my kidney? Will my right kidney miss my left? Will I feel wistful aching where it used to be?
I may.
But when I see his body, moving with strength, new health and energy... when I see his color return to normal from a jaundiced pallor, when I see his eyes look forward with a new spark... I won't feel sad. I will feel proud to watch it walk away.
My therapist imagined it to be much like childbirth: watching a part of you leave your body, mourning the separation but looking on with pride and hope... hope that you have helped create something new and beautiful in the world.

I still may never quite understand what people think and feel when they look at me with a hint of disgust and say, "I just don't get it." And that's okay. I guess if there's one thing I've learned, that somehow didn't get pounded into my head by PBS specials in elementary school, it's that sometimes it's good to be different.
I'm not like other people. I don't think the same way, or feel the same way. I have realized that, no matter how open and objective I think I am, sometimes it is impossible for me to see things the way other people do.
This was a startling, concerning discovery for a therapist. But it's true. And I have to accept it. Sometimes I'm just too different from other people.
This decision, and I hope many more to come, will only serve to make me more different. No matter how much it hurts, no matter how lonely it is, no matter how many times my expectations are disappointed... I have to remember the good.