There is a brokenness
out of which comes the unbroken,
out of which blooms the unshatterable.
There is a sorrow
beyond all grief which leads to joy
and a fragility
out of whose depths emerges strength.
There is a hollow space
too vast for words
through which we pass with each loss,
out of whose darkness
we are sanctioned into being.
There is a cry deeper than all sound
whose serrated edges cut the heart
as we break open to the place inside
which is unbreakable and whole,
while learning to sing.Rashani
For one second before I seize
I can feel it approach
like a hawk encircling its prey
with one exacting purpose.
At the same time
I am overtaken by an animal terror
for my body knows of what’s to come.
The hawk, with skillful acuity
dives in for the kill
and as I leave my body,
forced out by fright,
it grabs me with its talons,
attacks me with its beak
and strips me of muscle, thought,
bone, fur, awareness.
A few minutes later I return
to my shaking animal body
discarded by the hawk
rejected by death
and knowing only terror.
Restless and raw,
groundless and homeless,
pieces of fur and bone
lie scattered amongst fragmented thoughts.
bit by bit,
piece by piece,
every muscle spent
every neuron used up,
I put myself back together:
tendon to bone to flesh
to thought to awareness,
memory by memory,
I begin to recognize
who this self is.
I tremble and cry
at once overcome
with the horror and wonder
that is life.
I recently saw a documentary called Teddy Pendergrass: If You Don’t Know Me (Flooks, Lichtenstein & Tempest, 2018), about the life and death of Teddy Pendergrass. For those of you who don’t know, Teddy Pendergrass was a soul singer who became popular in the ‘70s. But at 31, at the height of his fame, he had a bad car accident that made him a quadriplegic. Fortunately, he was able to breathe on his own, talk, and raise his arms half-way.
Understandably, he fell into a deep depression. Can you imagine? He went from being a famous, successful star to suddenly becoming some guy in a wheelchair; hardly able to move. He hadn’t invested his money well and didn’t have much to support himself and his family. Talk about changes in identity!
He ended up going to a therapist who was also in a wheelchair. Session after session, Teddy showed up, but finally came to the conclusion to end his life. His therapist told him that he had a moral obligation to tell his family his decision, and Teddy agreed to have one last session with all of them there.
When the time came, his family begged him not to take his life, but Teddy was adamant he was not going to change his mind. On the way out the door, he said to his therapist, “Well, I probably won’t see you again, so good-bye”.
His therapist hung on to the word “probably” and then suggested the most surprising thing: that he set up a time for his family and close friends to get together and stage a funeral for him, during which time Teddy would be covered with a sheet. He was not to say a word while everyone spoke about him as if he were dead.
After everyone finished, the sheet was lifted and he said, “I want to live”.
He then concentrated on building up his strength and because he was able to lift his arms, he could exercise his lungs and was eventually able to sing.
His therapist, who hadn’t been in a wheelchair that long himself, said, “saving his life was like saving my own”.
I love this story. Not so much because he went on to find fame and fortune again, but because he took his suicidal thoughts as far as he could without actually playing it out. This unorthodox ritual is finally what it took to turn him around and give him the inspiration he needed to find purpose in his life again.
I wonder what his friends and family told him that changed his mind? What would I say to a loved one in a similar situation? Why hadn’t their desperate pleadings in the therapy session make a difference, but what was said in the funeral did. What would I want to hear if I were playing dead?
What would you need to hear to help keep you going in the worst of times? Can you tell yourself these things now? How do we accept the unacceptable in our lives? What abilities do you still have, and what can you do to continue to develop them? Can you find purpose and meaning in your life just the way you are? What do you value about yourself? Can you ask your loved ones now what they value about you, what it is they would miss if you were dead?
This movie, too, reminded me of the book Tuesdays with Morrie, a true account by Mitch Albom (1997). Morrie was Mitch’s mentor who ended up having a terminal illness. Morrie decided that he wanted a memorial service while he was alive, so that he could hear what it was that people loved about him. His thought was: why wait until I am dead when I can’t hear what they say?
Would you want to do the same thing?
I am seriously envious. My sister just came back from China. She went to a huge Chinese wedding. She climbed a mountain that looks just like the pictures you see; swirling fog at the base of the mountain, steep inclines, wild orchids growing on the side of the cliff. She hiked the Great Wall. She ate exotic foods and met all kinds of people. My sister is 52 but has the energy of a 20-year-old. She lives in Massachusetts and in five days will fly out here to California for 5 days!
I’m bright green with envy. Glowing. You can see me from miles away. I want to travel too. And often. And go just about anywhere. She sounded upbeat and as full of enthusiasm as a puppy. I told her “I wish I had about 1/3 of your energy!”.
I grew up in a family where travel was our middle name. We lived in California 9 months out of the year and 3 months on the east coast. Before I had problems with seizures and severe sleep deprivation, we went to Europe: Denmark, France, Italy, Greece. I went to Jamaica with my parents and Trinidad and Tobago. Guatemala and Honduras. Traveling is in my blood. And now? Now I don’t drive outside of my hometown. If I go anywhere else, I have to have a caregiver take me, and then usually for a doctor’s appointment a half-hour away. I did manage a trip back east last year with two caregivers, but it was brutal getting there: I felt like I had to slay a few dragons to get there.
In my fantasies, I’d like to live back east part of the year. I’d like to travel to Asia – Bhutan maybe? Thailand, Nepal? I’d like to go to Africa, too, but I’m not sure which country. Europe: pick a country, any country. I’d like to go to Alaska and see the Denali National Park. I’d like to go to Nova Scotia – just ‘cause. Costa Rica for sure. Australia and The Great Barrier Reef. Tahiti. The Caribbean. I want to see the Taj Mahal. Machu Pichu. Findhorn. Stonehenge. Victoria Falls. I’d like to hike, swim, zipline, snorkel, scuba, snowboard, hang glide, surf and kite surf.
So… I’m just a tad envious.
Which brings me to the topic of complaining. As someone with chronic illness, I feel like I’m not supposed to complain too much. There are always others worse off than me. So, I should be grateful for what I can do. As a society we love the “super crip”- the differently abled people who not only never complain but are able to do extraordinary things. Someone without legs managing to run a marathon with prosthetics. Someone who is blind who climbed a mountain. Someone who has Crohn’s disease becomes a medical doctor. These are all commendable achievements to be sure, but what about the rest of us who don’t accomplish such feats?
Personally, I think for most of us, it’s a feat just to make it through the day. For someone who suffers from depression to get out of bed. Another to walk from the bedroom to the living room. To get through one more day of pain without thoughts of suicide. To be able to balance a check book, make a meal, sweep the floor. Hold down a job.
In the middle of writing this, I took a break and walked outside. It’s been raining lately, and everything is so green. There’s the dark green of the pine trees that line the driveway, the ends of which are lighter from new growth. Cattails below the house shimmer a soft green that sometimes darkens when clouds pass by. The tall grass in the meadow is a shiny lime green. Green is a beautiful color with so many shades.
So, are there various shades of human emotion: fear, irritation, rage, excitement, sadness, and yes, envy? It’s human to have and feel emotions. To get stuck in them and have them eat a hole in your stomach or heart is something we want to avoid.
When I came back from my short walk, I felt something inside shift. I sat down and listened to the rain that started falling – a beautiful sound. I glanced at my cats who were sleeping peacefully. And I sat with my envy, green and glowing. It’s a beautiful thing too! A human thing.
And so, when my sister comes to visit, I will hug her hard, and squeeze her hands, and ask her more details about her adventures and look at her pictures on her iPhone. And I will be happy for her. And I will be grateful I have a sister who I love and loves me back.
And I will probably bring with me a touch of green envy. Emerald? Perhaps ivy? I’ll decide then.
The following is an excerpt from my “book” that I never finished, that continues to probe the question “who am I?”.
Who Am I? Or Being vs Doing
Walking the path of chronic illness is much more about being than doing. We may have to rest, maybe more often than we might like and we often move through our day slowly, sometimes stiffly or painfully. Many of our days are spent just taking care of chores that have to be done, like taking out the garbage or doing the dishes and little else. Our entertainment may be simple, like watching TV, playing games on our gadgets or going to the park to people-watch. We have time on our hands, and, unlike able-bodied people, our time has little to do with being active. In this Western culture, there is much more emphasis on what we do than who we are. (In fact, a clear example of this is if you meet someone at a party, the standard question to start a conversation is, “What do you do?”. A friend of mine, who had Lyme disease for some time would answer, “I work hard at staying happy and healthy”. Someone else I know asks a different question that is much more interesting than the standard one: “What is it that you’d like me to know about you?”).
As we explored in the section on loss, for most people, we have been defined by what we do to earn money and what we have accomplished in the physical world, rather than anything going on in our inner world. Therefore, when we become chronically ill, we can often experience a feeling of low self-esteem or ineptitude, because we aren’t producing something or being very active. The path of chronic illness can force us to explore our inner world, whether we like it or not, and who we really are and get underneath the labels we have had up until then, like “teacher” or “jogger” or “social butterfly”. In fact, if we take this even further, one of the greatest teachings chronic illness has to offer is to show us that who we are at the core level, is of the most importance and value. A good example of this is that for a time, I regularly chanted with a small group that was led by a Tibetan Buddhist lama. The first time I met him, I was floored by his essence. I walked into the meditation room and instantly felt a calm, expansive, loving, gentle energy emanating from him. I was so drawn to this energy! I wanted it for myself! And all he was “doing” was sitting there – he hadn’t even opened his mouth to speak! I immediately felt some of that calm pervade my being, understanding later, that a certain transformation had taken place in me just by being in his presence. Who we are at our very core can heal.
Being chronically ill can bring most of us to our knees at some time or another. What does this really mean? It means we are forced to let down our defenses. It means that when things are at their most challenging, our life is pared down to the very basics to what has to get done and what doesn’t. We are forced to rest even when we don’t want to – our bodies give us no choice. So, what are we left with when all else falls away? Our own energy. Who are we without our doingness? When things begin to break down, when we can’t be active, once we break through our first response of anger or perhaps fear, we begin to see our essence, our beingness.
We have already had to peel back the layers of our former identities and what defined us – job titles, etc. We may have to also peel back the layers of symptoms and our mind’s reaction to them to probe further, because they don’t define us either. The natural next step then, is “who am I beyond this physical body?”.
When I rest in the answer, or perhaps I should say, the question, I find myself resting in the Great Mystery, or beingness, itself. And when I’m resting there, I feel a completeness and an understanding that I’ve tapped into something of great value, and in the moment, I let go of any self-pity or any low self-esteem I may have. It might not solve any problems on the physical level, but it can bring me great peace.
Meditation: Who am I?
Get in a comfortable meditative position and relax your body and mind as much as possible but remain alert. Notice how sensations in the body arise and how some dissipate, how they change. After some time of just noticing, ask yourself the question, “who am I?”. Let yourself sit with the question. Or, you may find more appropriate the question, “who am I beyond this body?” or even, “what am I?”. See what happens as a response. Rest in that.
The following is an adapted excerpt from Ken Wilber’s adaptation of Roberto Assagioli’s version of “Who Am I?”.
“I have a body, but I am not my body. I can see and feel my body, and what can be seen and felt is not the true Seer. My body may be tired or excited, sick or healthy, heavy or light, anxious or calm, but that has nothing to do with my inward I, the Witness. I have a body, but I am not my body.
I have emotions, but I am not my emotions. I can feel and sense my emotions, and what can be felt and sensed is not the true Feeler. Emotions pass through me, but they do not affect my inward I, the Witness. I have emotions, but I am not emotions.
I have thoughts, but I am not my thoughts. I can see and know my thoughts, and what can be known is not the true Knower. Thoughts come to me and thoughts leave me, but they do not affect my inward I, the Witness. I have thoughts but I am not my thoughts.
Then affirm as concretely as you can: I am what remains, a pure center of awareness, an unmoved Witness of all these thoughts, emotions, feelings, and sensations.”
Roberto Assagioli is the “founder of Psychosynthesis” (Ken Wilber).
Adapted from “Grace and Grit: Spirituality and Healing in the Life and Death of TREYA KILLAM WILBER by Ken Wilber”, p. 125