Sitting in this crowded room

Couples chatting,

people waiting impatiently,

others working,

some reading

You are here

but how many can feel you?

You’re in the sun streaming through the windows –

how many are noticing you?

You’re in the smile of the man telling a story –

how many recognize you?

You are my secret

I want to tell everyone

But they couldn’t comprehend

And so I watch

and smile.


Do you know how it feels to have the sun kiss your skin on a winter’s day?

Have you danced and laughed in the misty rain?

Have you relished the laugh of a small child, pure and true?

Have you held the hand of a friend as they grieved?

Have you been moved to tears by a beautiful




by music




Have you been alive and seen the world?

Then you have known God.



I feel you radiate from my smile

I imagine anyone who looks at me can see your glow

Is this the same glow that comes with pregnancy –

you, showing your miracle within a woman’s body?

My vision is clear

My mood is uplifted

I naturally send love to all I see

Thank you for filling me

Thank you for lighting my soul

Thank you for gifting me with your presence

Thank you for allowing me to share you with the world

even if they don’t know from whence the joy comes


I’ve only touched briefly here on what you all know happened – my transplant and recovery, my wonderful new life.  My spirituality has really grown through the whole transplant process and through the work I’m doing in seminary, and it’s showing in my poetry and lyrics.  I’ve been getting encouragement of various sorts to share my writing with people, so I’m slowly doing that.  A lot of the lyrics I want to ‘work up’ into songs properly, and that takes more talent than I can easily come by.  (The melody line comes easily to me, but I struggle to transform that into sheet music and chords, not to mention any instrumental parts.)  I have some friends that can help with that, but that’s not the most satisfying solution, either.

But while I’m processing how to get lyrics into “listenable” format, here are a few that I haven’t shared before, just so I get in the practice of sharing.   I apologize for the formatting; I might have to switch to a different blog theme so the poems work better.

My Heart Breaks Open

My heart breaks open

At the sound of a baby cyring

A homeless man

begging for spare change

My heart breaks open

When a friend’s in trouble

A great-aunt

whose gone to her last sleep

My heart breaks open

When I hear of an accident

on the 6-o’clock news

My heart breaks open

When I hear of abuse

and there’s nothing I can do

That’s when I pray

May all God’s beings

be safe and warm tonight

May everybody

get the care they need to feel alright

May sadness and depression

leave and never return

May all beings

be peaceful once more

If we believe

The stories of the Garden

All beings living

in perfect harmony

If we believe

Religions teach us

It’s better to give

than to receive

If we believe

The world can be a better place

It is still possible

if we all pray

May all God’s beings

be safe and warm tonight

May everybody

get the care they need to feel alright

May sadness and depression

leave and never return

May all beings

be peaceful once more

My heart breaks open

May peace be with us



It’s my heart breaking a thousand times

The feel of His presence holding mine

Thinking it can’t get any worse

But smiling, still, when I see the nurse

It’s holding on holding on when the pain’s so intense

Knowing somehow this all will make sense

No control no control only Let Go

And float and be and live and breathe

Knowing in your darkest depths, you’re not alone

When the pain’s getting worse, He’s steady as stone

My heart keeps beating; I am still here

No matter what happened, He’s in me, I feel

That stir,

that knowledge, so deeply engraved

Carved on my heart from my very first day

Everything taken away from me now

All of my roles, my meaning, my sound

The core of me lays here, still glistening bright

Just waiting to get up and turn on the light

The light from within makes me move when I can’t

It guides me along, it steadies my hand

It comforts or chides me; it knows me best

It’s kept me alive when my body would rest

I tend to the flame now, harder to see

So many good things surrounding me

But I know it is present, I just call out the name

And I feel the warmth from the Eternal Flame


I wrote this in ‘response’ to the homework question, “Reflect on the notion of being able to stay illuminated solely from within in the midst of pain.”   Those who know me know that my notion of God isn’t as clear-cut as the Abrahamic version of the old man in the sky.  But in this case, the male pronoun is what came to me and what worked in the poem – which is how I write.    Those who know me will also know that this brought me right back to that time – 11 months today  – when my body was done, given another chance by medical science and miracle science, and my soul held on and shined and shined and shines. 🙂  I am eternally grateful.

I’ve found that my heart can’t go into the freezer, then the oven, then the freezer again without cracking, splitting open, letting untold Love in and out, and finding a connection with humanity that’s too often walled off.

The past few days, I’ve had a sorrow-joy-sorrow sandwich, though I’ll admit that both the joy and sorrow were tinged with each other.  I seem to be finding spectrums in everything – but that’s another post.

This is Transgender Awareness and Remembrance Week, so both Thursday and Saturday evenings I attended and took part in remembering the victims of violence that took place because the victims were perceived to be gender-variant – or were associated with someone who was perceived that way – whether they would have called themselves transgender or not.  Friday, by huge contrast, was the Interfaith Thanksgiving  Prayer Service.

THURSDAY NIGHT I attended the first Transgender Day of Remembrance (TDOR) vigil held in my city of Lowell.  18 of us, including a 2-year-old child, met in front of Lowell City Hall at 6:30pm.  We were greeted by the organizer, heard an invocation and prayed with my own church’s intern minister, Russ Menk, read the names of the 22 people who had been killed in the past year (based on the list this group found online), and then walked with lit candles and a few memorial signs through downtown to the UMass Lowell Inn and Conference Center.  There we heard from Rev. Laurie, a transgender UU minister, and from those of us who wanted to share what brought them to the vigil.  It was lovely to see a number of UMass Lowell students there, along with the core organizing group from the Center for Hope and Healing GLBT group, and our own 3-person contingent from First Parish UU of Chelmsford.

I must say, I was pleased to be a UU that night, even more than usual, as I stood on the side of love for all people of all gender identities – as we are all beloved children of God, created in God’s image, as he chooses for us to be.  Having the courage to live your own authentic self, especially when that goes against cultural norms, is an amazing act of faith and a tribute to the God that made us all.  Those of you who have received emails from me will recognize this quote:

“God did not create a universe of cookie-cutter homogeneity but rather a thriving web of complex and diverse ecosystems. This is true in the natural world and the human world as well. A radically loving God does not expect people to fit into narrow cultural norms of body size, sexual orientation, physical ability, marital status, or other modes of life. Rather, our Universalist faith tells us that being created in God’s image means being part of a vast, complex, imperfect interdependent system.”
~~ Reverend Meg A. Riley,

It was a night of the sorrow of senseless violence and the bittersweet hope brought by connections with new friends and the new, yet incomplete, state legislation to protect transgender people.  If you’re wondering what the ‘public accommodations’ clause that was left out of the bill really means: Transgender people can legally still be refused service or kicked out of bars and restaurants, kicked out of stores, kicked off busses, etc.

THE FOLLOWING NIGHT, Friday, was a complete switch in mood.  I was a little nervous going to the Interfaith Thanksgiving Prayer Service, if only because I didn’t know what to expect or whom, if anyone, I’d know.  It was amazing – joyous and festive.  We had 12 people there from First Parish UU of Chelmsford and three others that I knew from elsewhere.  And the people I knew were still the minority. 🙂  We started at Temple Emanuel, a Jewish Temple in Chelmsford.  The service included worship and prayer from Jewish, Muslim, Buddhist, Hindu, Native American and Christian traditions.  I must say the Muslim call to worship, the adhan, just brought the Divine energy straight through my soul.  The muazzin who recited it (performed? sang? channelled?) was trained in Turkey, speaks no English, and seriously has a voice and talent and energy blessed by Allah.  We had a lovely service at the Temple, with a number of upbeat Jewish blessings and prayers in which we were required to sing and clap along – even if we didn’t know the words. 🙂 The feeling in the air – with approximately 100 people – was of warmth and love and coming together.  [Fun Interfaith fact:  Did you know that in the original language (Aramaic), the only difference between Elohim and Allah is a vowel (Elaha is the root of both) — and vowels aren’t printed?]

Leaving the temple en masse, the majority of us proceeded to the Islamic Society of Greater Lowell.  It was my first time in a mosque (masjid), and I must admit I was very conscious of not wanting to offend in any way.  But I found the people very warm and welcoming and genuinely pleased to have us there.  After depositing shoes and coat, and making sure (as women) our hair was covered (an almost-requirement in the prayer room, but at one’s discretion otherwise; as visitors we could cover if we wished, so I wore a scarf over my head), we proceeded to our side of the curtain in the prayer room.

We were blessed to have two very helpful sisters of the mosque explain to us a bit about the prayer (the last of the day) and the reasoning for the curtain.  I must admit that I was dubious about the need for modesty – until I saw the prostrations and gave half-a-thought to having men behind me as I bent over like that – yeah, I think I’d prefer to sit behind the men or off to the side, thank you very much.  Although I couldn’t see the imam leading the prayers, others on our side could, and it was by his audible direction that the prostrations of the prayers were done.  Not surprisingly, prayers are done facing Mecca; I found it ingenious that the carpet lines up in that orientation, as well, so one can just pick a line to stand on and be straight on.  The lines are even far enough apart to keep people from bumping into each other with prostrations.  I would guess many mosques have carpets like this, but I still found it a very strong sign of how important the details were and much they’d done to convert this part of an office complex into a place of worship.  All I can say about the prayers themselves is that the reverence and devotion to Allah were palpable.

After prayers, we went downstairs into the community room for dinner, prepared by members of the mosque. What a wonderful problem – they hadn’t expected so many people!  So we had plenty of food (amazing, wonderful food!), but some people were standing to mingle and eat, even after extra chairs had been brought in.   A blessing was given and more of the Quran was recited / brought forth through that awe-inspiring voice.  Then we ate, encouraged to sit and talk with people of different faiths and those we didn’t know.

What comraderie! What bonding! What food!  All of us there in love; we didn’t want to leave, and much contact information was exchanged.  (I now have two new best friends: one from the Temple, whom I actually met at the TDOR vigil the night before, and one from the mosque.)   I came home on such a high, I think I left my winter coat there, but didn’t notice until the following day!

BUT THEN SATURDAY EVENING… back into the freezer, as we hosted a TDOR vigil at church.  I arrived early to help set up, as our plans required a bit more set-up than Thursday’s vigil.  We probably had around 18-20 people present, and most of those ended up participating in one way or another.  Will played a beautiful and moving piano piece as our prelude.  I read the chalice lighting, then both Warren and Dee said some introductory words on the history of Transgender Day of Remembrance.

Then we read the names of the 221 people whom we know of from around the world who were killed just for being who they were, just within the past year.

  • Name (if known)
  • Age (if known)
  • Date of death
  • Place of death {often included both the town and the place within the town – her own apartment, a pharmacy, the street;  and often was difficult to pronounce, since none of us speak Portuguese or Spanish particularly well, and many were from South America}
  • Cause of death

I read 55 names, as did Carl, Edith and Warren.  We took turns by the page… after page… after page.  When we finished a page and sat down, Dee handed us another page.  They felt never-ending.

What many of the listeners didn’t know is that we were editing as we went.  Almost all of the listings had, in addition to the above information, a sentence or paragraph that further described the situation.  For example, the cause of death might be ‘stabbed.’  But the paragraph said, among other things, that she was stabbed 17 times in the face and neck.  Or strangled…. but they found the body partially decomposed in a sewer.  There was a beheading on a street.  A woman was shot – while in a hospital bed – by her own brother, so that he could cleanse his own name.  So, as readers, we read all the details of all the 55 names in front of us.  And, as we moved through the reading, we found it necessary to let some of that information slip into what we spoke out loud.

It was very difficult.  Hard enough to think of 221 people being killed in one year senselessly, just because they’re different.  Harder to hear the names, without your automatic defenses saying ‘that’s too much!’ and shutting you down – whether into daydreaming or apathy.  Yet harder still to read all that information on all those people, and have to stand up and share that terrible news aloud.  Stabbed 17 times.  Police were called at 5:40pm, but didn’t arrive until 9pm.  Wanting to say to the people listening, ‘Did you hear what I just said?’ Praying to God between my own pages, “Please, let them be at peace. Please let their tormentors and murderers recognize that they’ve done something horrible and repent.  Please let love prevail and the senseless killing stop.  Please let this be the last page I have to read.  Please.  Please….”  But the pages just kept coming one after another.  Willing myself to stay present, to not go numb, to feel the grief and the shock, to convey that throught my reading so my listeners would be jolted out of whatever ease they’d dug for themselves.  This was not an evening to be at ease.  It was an evening to mourn those we know of and the thousands we don’t know of.  It needed to be a hard evening.

We had to witness.  We had to hear their names and remember them.  Only by witnessing are we moved to action; only through action does the world change for the better.  To paraphrase, “They came for the transgendered people, but I wasn’t transgender, so I stayed quiet…”  But at some point, their safety is our safety, their body is our body, his soul is my soul.  How can I turn my back on myself?


We are always more alike than we imagine.

Treat everyone as you would want to be treated.  Why is there so much violence when this is such a simple and universally accepted rule?

THANKS TO THE FOLLOWING for sponsoring these amazing evenings:

  • Center for Hope and Healing GLBT Task Force
  • Greater Lowell Interfaith Alliance (GLIA)
  • Temple Emanuel
  • Islamic Society of Greater Lowell
  • Welcoming Congregation Committee at First Parish UU Church of Chelmsford — especially Dee who worked her butt off
  • International Transgender Awareness site — location of the list of 221

It’s good to crack open; it lets you see what’s inside.


  • Thoughts to discuss:
  • Has anything cracked you open recently – or not recently?
  • What stirs your heart and/or calls you to action?
  • Most of the TDOR victims had been killed through very personal violence – face-to-face, passionate, angry, scared.  Have you ever had that kind of visceral reaction to something or someone (not necessarily to that extent)? How did you deal with it?

Cross-posted to KalyanaMittaSangha.

I am often asked or complimented on how I get through all that I’ve gone through – the progression of the CF, the transplant, the immediate recovery, and the still-ongoing long-term maintenance of these new lungs. My spirituality has been life-saving, particularly my Buddhist practice and learning. I’d like to share with you how that’s happened, how the Dharma (the teachings of the Buddha) have helped me to deal with dharma (the way life is).

The traditional legend of the Buddha’s quest for enlightenment tells us that throughout his youth and early manhood Prince Siddhattha, the Bodhisatta, lived in complete ignorance of the most elementary facts of human life. His father, anxious to protect his sensitive son from exposure to suffering, kept him an unwitting captive of nescience. Incarcerated in the splendor of his palace, amply supplied with sensual pleasures and surrounded by merry friends, the prince did not entertain even the faintest suspicion that life could offer anything other than an endless succession of amusements and festivities. It was only on that fateful day in his twenty-ninth year, when curiosity led him out beyond the palace walls, that he encountered the four “divine messengers” that were to change his destiny. The first three were the old man, the sick man, and the corpse, which taught him the shocking truths of old age, illness, and death; the fourth was a wandering ascetic, who revealed to him the existence of a path whereby all suffering can be fully transcended.

This charming story, which has nurtured the faith of Buddhists through the centuries, enshrines at its heart a profound psychological truth. In the language of myth it speaks to us, not merely of events that may have taken place centuries ago, but of a process of awakening through which each of us must pass if the Dhamma is to come to life within ourselves. Beneath the symbolic veneer of the ancient legend we can see that Prince Siddhattha’s youthful sojourn in the palace was not so different from the way in which most of us today pass our entire lives — often, sadly, until it is too late to strike out in a new direction. Our homes may not be royal palaces, and the wealth at our disposal may not approach anywhere near that of a North Indian rajah, but we share with the young Prince Siddhattha a blissful (and often willful) oblivion to stark realities that are constantly thrusting themselves on our attention. If the Dhamma is to be more than the bland, humdrum background of a comfortable life, if it is to become the inspiring, sometimes grating voice that steers us on to the great path of awakening, we ourselves must emulate the Bodhisatta in his process of maturation. We must join him on that journey outside the palace walls — the walls of our own self-assuring preconceptions — and see for ourselves the divine messengers we so often miss because our eyes are fixed on “more important things,” i.e., on our mundane preoccupations and goals.

–Bhikkhu Bodhi, in “Meeting the Divine Messengers”

Five years ago in February, Tim and I began meditating with a wonderful teacher named Abhaya. Our friend Brenda soon joined our sitting group, and thus began the meditation group that we still maintain and organize and attend every Tuesday night. (Abhaya left us after a year for health reasons; we’ve been a primarily peer-led group ever since.)

Although I had meditated before, this was my first exposure to Buddhist tradition and philosophy. First, of course, we learned the Four Noble Truths – suffering, the cause of suffering, there’s an end to suffering, and the Eight-fold Path. What a revelation to me! Not that suffering exists, that was all too clear to me. But: Suffering Exists!! Let’s be loud about it and not pretend otherwise! It seems in our culture we try to ignore suffering or push it away by distracting ourselves with prettier or newer things, instead of looking at it straight on. How amazing – to just acknowledge that suffering exists!

The story of the four messengers (as above) is also one that we heard early, and its message got into and liberated my heart. Of course – what could be more true? Each one of us will get sick, get old and die. The only way to avoid the first two is to get to the third more quickly. Siddhartha Gautama (who would later become the Buddha) saw these things – along with the fourth messenger, the holy man – and set out to find that which is beyond sickness, old age and death. I heard this truth and said, “Oh. So I’m not that special because I’m sick; everyone will be sick at some point. There’s something more to me than just that.” In this place, in this tradition, I don’t have to feel that my sickness is something to hide and be ashamed of. As I learned – experienced – on a retreat, in this tradition, the overwhelming response to my cough is not pity (“Get away from me. I’m so glad I’m not you. Poor you.”) but compassion (“Wow – I’ve been there before / I can only imagine what you’re going through. I can tell how much you’re hurting. What can I do to help?”). It’s impossible to describe the difference one feels between receiving pity and receiving compassion. In my case, I had to be willing and able to give compassion to myself before I could receive it from others. Previous to this retreat, I always felt it as pity (regardless of the sender’s emotion), and therefore would shrug off any help. I wanted to hide my cough and my condition as much as possible, sometimes to the detriment of my health. The progression of my illness made hiding it more and more difficult; I am very grateful that I was introduced to this religion / philosophy / practice (pick your own label) where hiding is not necessary.

There is also the story of the two arrows. (I’m going to paraphrase, here.) The Buddha told the story of two men. One was shot and wounded by an arrow. It hurt, but he had it pulled out and survived. The second man was also shot and wounded by an arrow in the same way. It hurt him in the same way. But instead of pulling it out, he spent time asking ‘Who shot me? Why did they shoot me? What kind of arrow is this? What’s it made of?’ By the time he might have gotten around to pulling it out, he had already bled to death. So – obvious lesson: Take care of the physical injury before the emotional / mental injury. But the lesson that is more applicable to everyday life is this: There is some pain that we can’t avoid – a broken leg, for example. That pain is the first arrow. But then we have a tendency to beat ourselves up, ask unnecessary questions, and worry about the future – ‘I’m so stupid; I should have seen that root in the path.’ ‘I never look where I’m going.’ ‘Why wasn’t I paying attention?’ ‘How am I going to get to work tomorrow?’ This causes additional suffering – the second arrow – which is avoidable. So, to bring this back to my own life – which I was able to do fairly quickly, at least in theory: Yes, I have CF, and it causes suffering (more or less, depending on the moment). I can’t stop that suffering. But this aspect changes: I can’t cure myself from having CF, I can’t stop the coughing (most of the time), I can only do so much to slow the progression of it, and I can’t do anything about how I did or did not take care of myself in the past. If I cut out all of the negative thinking that goes with the physical discomfort, I’ve eliminated a HUGE source of secondary suffering, which often was more painful than the primary arrow. How I react to my illness makes all the difference in the amount of suffering I experience.

Finally, there’s the central teaching – better, understanding and recognition – of impermanence. Once we stop to look at existence, we realize that nothing lasts forever, even things that seem most solid. The mountains will erode; the houses and buildings will crumble; our selves and our relationships are in constant flux and growth and will eventually end. This is very comforting to someone who is sick, especially one who goes through cycles of acute sickness followed by less sickness. I will not feel this poorly forever. This pain will not last forever. This isn’t a call to suicide; the pain will pass on its own, in a natural manner. I’ve seen it happen before; no matter how bad it seems right now, I know it will pass. This knowledge can help to relax you in the most uncomfortable situations. (It’s the equivalent, on a larger scale, of the woman in the gynecologist’s office going to her ‘happy place’ mentally – a beach in the Bahamas, for example. She knows the exam won’t last forever, so she just needs to wait it out.) Even at my lowest – in the hospital in Boston, attached to a chest tube with suction, knowing that I would not be allowed to leave the hospital unless they could wean me off the suction, which didn’t seem to be working — even then, I knew and trusted and took refuge in impermanence. Either this would somehow get better, I’d get a transplant, or I’d die. At that point, that didn’t seem like a stretch to say. Even death, at that point, would have been some comfort – mainly because my body was so tired.

And then… the transplant and initial recovery. Of course I was thrilled to be alive and have a new chance at life, though I could barely comprehend it. Throughout the hallucinations, through some of the worst pain – when I’d already had what pain killers I could, and had to just wait it out — impermanence was my friend. I saw it play out constantly, as how I felt changed hour to hour.

And now… watching myself is like watching a new person. I’m reforging my identity – another proof of impermanence of self. I have enough energy to work-out on the treadmill, dance for hours at a wedding, sing for a church service or just because I feel like it. I have a huge burst of inspiration and motivation to write song lyrics and poetry. But I know…… all of this is also impermanent.

That’s where we take this into life. This is what the teachers and books have tried to teach me – but you can’t be taught, you have to experience. You have to feel what it’s like to NOT have health and energy, in order to fully embrace and appreciate having it. Feeling how quickly it was gained allows me to know that it could go away again at any moment, and that really does make me want to live every minute of every day in a way that I will be proud of – whether it’s doing something “productive” or not. I need to decide where I want to place my priorities, where I want to put my energy.

I expect I would have survived my lung transplant without my knowledge of the Dharma. I am strong-willed, and I have always felt that I was put on this earth to “do something,” which is a great motivator. But the Dharma has allowed me to thrive and grow spiritually as my health faded and then was re-born.

As Bhikkhu Bodhi concludes in “Meeting the Divine Messengers”

The final word of the Dhamma is not surrender, not an injunction to resign ourselves stoically to old age, sickness, and death. This is the preliminary message, the announcement that our house is ablaze. The final message is other: an ebullient cry that there is a place of safety, an open field beyond the flames, and a clear exit sign pointing the way of escape.

If in this process of awakening we must meet old age, sickness, and death face to face, that is because the place of safety can be reached only by honest confrontation with the stark truths about human existence. We cannot reach safety by pretending that the flames that engulf our home are nothing but bouquets of flowers: we must see them as they are, as real flames. When, however, we do look at the divine messengers squarely, without embarrassment or fear, we will find that their faces undergo an unexpected metamorphosis. Before our eyes, by subtle degrees, they change into another face — the face of the Buddha, with its serene smile of triumph over the army of Mara, over the demons of Desire and Death. The divine messengers point to what lies beyond the transient, to a dimension of reality where there is no more aging, no more sickness, and no more death. This is the goal and final destination of the Buddhist path — Nibbana, the Unaging, the Unailing, the Deathless. It is to direct us there that the divine messengers have appeared in our midst, and the good news of deliverance is their message.

To consider:
* How have the teachings of the Buddha, or your own spirituality, helped you to weather life’s ups and downs?
* Have you felt like you need to hide an illness in some situations, but felt embraced in spite of – or even, with – your illness in other places?
* What is your personal relationship with the knowledge of old age, sickness and death? Do you ignore it? Embrace it? Have mixed feelings around it?
* Going to a previous question of ‘Whose Values?‘, do you think that our western society has a different attitude toward old age, sickness and death than other societies (other places or times)? Or, perhaps, what are the differences between the cultural and spiritual values (Buddhist or otherwise) surrounding these facets of life?

I suppose I should apologize for such a delay between my posts, but I’ve had a good excuse. As many of you know, I received a double-lung transplant on January 7, 2011, in Cleveland. My recovery has been remarkably smooth and quick [lots of *knocking on wood* and gratitude to God / The Divine / The Universe], but it still requires a bit of time and effort and energy. That said, I was thinking at various moments ‘I really need to write this into a blog post,’ and I tried to journal at least for the first few days (once I was conscious) in the hospital. I now have, in part, three or four different blog posts in various states of completion – two from pre-transplant and two from post. We’ll see how they progress. 🙂

So now without further ado….

Identity in… Onions and Butterfly Pillows?

My life is being renovated.

In the (still early) recovery stage from my double-lung transplant, we have decided that the old shag carpet in our house needs to go bye-bye. We’ve wanted to get rid of it for years, as the germs and pathogens (the doctor wrote that into the prescription) weren’t good for my allergies, much less my CF. But they are even worse for the post-transplant immune system. And we have the luxury to spend as much time as necessary with my in-laws while the work gets done. So it will start this week.

I went to the house yesterday for the first time in two months, and it feels like a completely different place. My mother and Tim’s parents have stripped it of its trappings; almost all of the decorations, knick-knacks, vases, etc have been packed up and hidden away. The bookcases and books and CDs and DVDs are all gone. The plants are all gone (and will need to stay gone). The tv room, which I’ve felt to be my sanctuary at times, is down to just the bare furniture; the comfort from the blankets and pillows is missing. It’s still my house, but it no longer feels like my home. It’s lost its identity.

The same thing happened through the progression of my CF, especially in the last year or six months. I realized at some point that my identity was peeling away, like the layers of an onion, as I became more sick and less able to do the things I loved. My former identities included the roles or labels of scholar / intellectual, professional, dancer, actor, mentor and musician. The last fell away when I determined I could no longer participate in the church choir. Of course, these were all outward manifestations of my inner personality; I still feel like a musician and enjoy music, even without belonging to a group. But when / if someone asks me, “So, what do you do?” (the proverbial, ‘they’re asking for your job, but you don’t work, so how do you identify yourself?’ question), I have been reduced to “I’m a professional patient.” True, but not very satisfying – and it doesn’t speak to what’s in my heart.

What is in my heart is the core of the onion, so to speak. These are the identities that haven’t been stripped away by my illness, but have, in some cases, grown stronger through it. I am a wife, a friend, a daughter, a sister. I am a patient – for better or worse. I am a spiritual person. I strive / aim / hope to be compassionate, empathetic, helpful, positive and a positive role-model.

Now – a renovation! While I more fully saturate into these core roles, the energy from my new lungs has re-opened the world to me with all its possibilities. I made a list for the doctor of ‘when (if ever) could I do this’ items, which included everything from being on a movie set again to hiking up a mountain to kickboxing to stage combat. I’m realizing, however, that what I enjoy isn’t that much different than what I did before transplant; it’s just a matter of having the energy to do.

One power of a renovation is that you can re-decide what you want to have on a shelf, in a room, in your house, or in your life. If the floors are wood instead of green shag carpet, perhaps we’ll want a different color on the walls. Maybe we want the butterfly pillows, or maybe we don’t. In rebuilding my identity – in putting the layers back onto my onion core – I can choose which labels and roles to take back, and I can choose what priority to put into each one. Then again, can’t we all do this, without a transplant to be the catalyst?

Some food for thought / discussion:
* What identities / roles / labels do you have? Do you hold them voluntarily, or are they foisted upon you? Do you have a choice? Would you choose differently?
* There is a Buddhist meditation practice of continually asking oneself, ‘Who am I?’ How far down can you get into your own onion?
* At what point(s) in your life did you have a personal renovation? Did you strike out bravely or take tentative steps? Looking back, would you have done something differently?
* How does watching someone else’s renovation affect you? (Perhaps a parent watching a child grow and learn, or someone following my transplant process through LHH, with daily updates.)


Last summer (2009) my husband and I attended a fantastic workshop led by Reya Stevens, called ‘Illness and the Dharma.’  It was an incredible day for me.  Over and over again I found myself being blown away;  feelings and thoughts buried deep down inside me were spoken out loud, from the other side of a room.  And then, not only was I nodding and weeping, but others in the room were, as well.  Reya was, and we were, speaking of the realities of being chronically ill in a society that is NOT geared for dealing with illness, and how we might survive and thrive spiritually.

One concept that came up that day which has stuck in my mind and heart ever since is the idea of values.  More specifically, it’s the fact that cultural or societal values generally do not match up with spiritual or religious values. (Since this was a Buddhist-based workshop, we referred to the latter as Dharma or Dharmic values, but most mainstream religions line up in this case.)

Here are just a few examples:

cultural value spiritual / Dharma value
independence interconnectedness / helping each other
education / formal schooling wisdom / experiential knowledge
accumulating / spending lots of money generosity / giving / living on the generosity of others (eg, eating from a monk’s bowl)
high-powered and fulfilling career, high salary spending time doing something you love that blesses others / the world
M/F marriage w 2.5 kids celibacy, or loving relationship, or family, or ok to be on your own
perfectly put together, well-dressed and groomed simple, monk’s robes; focus on inner, not outer beauty

Our society is constantly setting expectations for how we should be, look, act and think in the world.  Those of us living with chronic illness come to realize quickly that the realities of OUR lives do not allow for, much less support, the values that society espouses.  We can no longer be independent.  We can no longer complete the course of study that we began, or we can’t push on and get that advanced degree.  We can no longer work 80-hr weeks and then be the PTA president.  (I don’t understand how healthy people do that!)   The critical question in these or a hundred other situations is this: Who says that these things are important?

So then it becomes a little more clear (to use a personal example) that continuing to work isn’t good for your health or necessary for your financial stability.  But it’s important for your ego.  And the expectations of your ego were set by… society (at least in part).  The emotional work that comes next is that of telling yourself day after day after day, “It’s okay that I’m not working.  I can take better care of myself without that stress and pressure.  No one thinks less of me, and if they do, it’s because they’re focused on societal values.  I am focused on what is right for me and my body.”

Retraining yourself to frame your experience in terms of spiritual values takes time and practice.  In the above example, a number of cultural values are being eschewed in favor of spiritual ones.  Not working means giving up the ideal of the career and salary and giving up some independence (perhaps financial independence).  In exchange, however, you hopefully will find other ways to spend your time (hobbies, volunteering, spiritual or social groups), which might make you happier than your job ever could; and you will likely find a much deeper connection to those you come to depend upon.

When you start looking at life from a spiritual values perspective, things start looking very different.  All sorts of questions or comments come up from simple statements / assumptions:

“To have a successful blog, you must….”           “What is successful? Who defines success?”

“What are we going to give for a gift?”                “Does she need more stuff? What would                                                                                                                              make her happier?”

“Nice to meet you. What do you do?”                 “[Well, I *don’t* work.  But I *do*…] Volunteer,                                                                                                                       crochet, garden….”

Discuss, if you like…..

How much of your life is dictated or encouraged by cultural values or spiritual values?

What assumptions do you make every day because of cultural values?

Do you think our society could function without a system of cultural values? How are they beneficial? Where do they go too far or not far enough?  Where is the line between seeing something as a cultural value and making it into a law?

What else did this topic make you think about?