Archives for category: Illness

from You Carry the Heavy Stuff, Lulu.com/Amazon, the author’s garage….. ISBN 978-0-557-20933-0-essays, poetry, observations from a twin’s dying to cubicle despair in a corporate world with voices of buoyant pathos, mystical reverence – you catch my drift

Why do I write?  Like now, when the dishes sit orphaned in the kitchen sink because I, the washer, am typing, sharing, breathing, living, putting off the inevitable, because once a long time ago, I was so hurt, I couldn’t breathe.  I carried that hurt with me forever, until I found out that sensitivity is the price and the prize for being able to write, for being able to read people, to Braille the unsaid.  I write to a lady in prison, who said “I liked a phrase you wrote, “The language of God is a tear running down someone’s cheek.”

I write because I read, insatiably, gobbling, inhaling, filling myself with the human condition; splat on the floor some days, like a big old squishy bug, flattened, dead, its body swept up by old straws on a broom; and then I write to show the magic of St. Theresa’s Snow Queen Altar when I was young, and how everything looked like a wedding cake, and I write to tell how when I was younger, and so needy I could have impaled myself on a stake wide and big, sort of like a meta-letter holder, except the stake would run through my insatiably needy heart, and a note on my back would read “loves too much,” and that was before the book Women Who Love Too Much.

I write because I have gone beyond Medieval Posts puncturing my despair and loneliness and have decided Men Who Love too Much is here too.  Maybe we all love too much, and I write because maybe none of us love too much, for we are told by images in advertising, that we should be thin, jaded in the eyes, like the look of models for Vogue or whatever, who probably could shoot up heroin on their lunch hours, and because despair is trendy and nihilism and materialism and not giving a damn might be the language of the hour.  But then there is the lonely, little, big, young, old, trembling, brassy, you-catch-my-drift-writer who writes because he or she must, and words have a visceral effect upon her, him, the dog, the surrounding room.  I write of hopes for the world, and a good ham sandwich or description thereof on a sour dough roll, with slabs of mayo, and a bed of lettuce, and curled pink ham,  ready to go into someone’s mouth which is opened to the size of half a ladder, is  a good thing, a good description.

What this nation needs is a good ham sandwich and a Pepsi without the aspartame and some down to honest to goodness honesty that is the natural condition to communicate, to be real, to be afraid of bugs in knotty pine walls when the walls come alive at night; to watch an elderly blind woman, clutch the corners of her walker, take a breath and remain a sweet sweet spirit, knowing that her condition, her tests are the divinely calibrated kind, even though trucks have run over her emotionally, and I write to tell of the anonymous amongst us, the bravery, the small acts of courage, kindness in this nation where the world is narcissistically checking its derriere in the mirror, and no one or precious few are listening to the “midnight sighing of the poor,” and where we must have immense courage and speak up; talk, yeah, walk the talk, be it; speak up; tell future generations who we were, wanted to be, became anyhow and our hopes for the future; because someday we will all be sensitive, spiritually inclined, aware of our oneness,  and otherness will go on a back shelf like Twinkies, no longer approved of by the American Heart Association, and writing will be celebrated by hoots and hollers and a piping or two from a medieval horn or Siberian throat, and the arts will have a way of grabbing our soul’s innards and carrying us through the day.  These are some of the reasons I write, but there are others, but today is Wednesday and those are my Wednesday’s writing reasons.

Yooo Hoooo Monday, where are you?  Drat, ack, eek.  I lost you.  “I forgot” can be applied to homework, like because my dog ate my homework, I can’t turn it in, or I just discovered I can’t speak Esperanto easily, or I’m not Celtic, Mayan, Troll-like, I can’t turn it in.  Doing this blog is not like homework.  I respond to Pili Pili Saka, the moment his blog comes up.  I’m like an orangy labrador, and I get a whiff of something coming to my territory.  My head lifts from the floor, my cold nose moves up and down microscopically, and then, there it is, Pili Pili Saka. 

Forgot, day swept by with fantastic emails about my book, my participation in a Wilmette Study Course, and an email from dear friend who wrote blurb on back of You Carry the Heavy Stuff.  Mikey likes it; even pili pili compared my writing to a French writer.  Reader, i slid under my desk, yes, by the dust, and the brick, red if you want to know, placed carefully over my email connection link, so as not to disturb and keep me connected.  Such is the old wiring in this incredible little pool house.  Be still my heart.

Yesterday, they filmed Mad Men down the street; I swear I posted that; have to check it out.  At any rate, Bill went to neuro guy who was incredibly thorough and wonderful – it seems severe allergy attack, plus benign positional veritgo, plus anxiety about being so dizzy sick, caused his adrenal responses to shoot up and thus the shakes.  Wow, and now we will go towards solutions!  We are relieved.

Okay I finished a book, The Man From Saigon, a novel, Marti Leimbach, a gripper, writing incredible.  It turns out this writer went to MFA program in Irvine, and that’s where when I began writing, I took classes from Oakley Hall and the other guy, Donald, can’t remember his name, and Roberta….. and it tricked into my curly brain and heart, and i began writing.  Showing, telling, using strong verbs, always 3 at the time.  I never do things lightly.  I’ve pulled back to 1 verb usage, find myself more moderate these days

I am going to reserve Dying Young and Daniel Isn’t Talking by the same author, although part of me shudders to think of adding more books to my list.  While you’re at it, throw in Jesse Ventura’s new book; forget title, yes Jesse Ventura.  He was a Navy Seal and he taught at Harvard, and he has stuff to say.  Who knows, but check it out. 

Okay so to add a more shallow cap to my day, while I finished Man from Saigon, sitting next to Bill on the couch, having done my daily huff puff walk for an hour, we watched TV.  Every now and then at 8 I’d click in Dancing with the Stars to see Kate clump across the floor, and the part of me that used to be a single mother thought, “Good, she’s earning money for the kids.”

You catch my drift reader; blessings and a glorious day and best wishes from Monday who regretfully is speaking Tuesday.

Next post may be about Baha’i Holy Days and stuff like that; hope you stay tuned!

Led wonderful workshop yesterday; went to great devotional  – Baha’i and writings from world’s scriptures read; great music, lovely home, wonderful people, conversation with laughter, spirituality, and great food.

Exhausted today; off I went to Monterey Park for fantastic Chinese Massage – $20, $5 of which is the tip.

Came out semi alive and looser, and crashed, and now on pewter updating life.

Small post-huge day, with bill, quiet; tomorrow neurology appointment for him.

http://pilipilisakasakadiaries.wordpress.com

read this dear ones and weep – but with stomping feet and yahoos to the sky. this is a fabulous blog. pilipilisakas’s writng is like butter on a hot black skillet. mmmmm hmmmmmm!

okay back to me. I’ts only almost noon and i’m still at the Pewter replying to blogs, email, facebook.

Today, this morning, old shirt, blinking eyes, fingers that run across the keyboard like the sound of French poodles in a hurry clicking their toes towards food bowls, these are my electric hours. Life is electric and i’ll list a few things at the end so you catch my drift. Drift dear reader; drift is important.

Today is exhaustion day big time. Was surprised. Went to cardio guy yesterday; and he’s now Bill’s Cardio guy too; very funny, dry wit, sardonic. While Bill was getting his blood pressure taken (read abnormally high) (read, situational) I was standing in the hallway, and I felt as if I were going to pass out. I never feel that way there. we were more nervous of Bill’s test results than we realized.

He’s got a hardening aortic valve, but doesn’t have to have surgery, like I did and he won’t. I lived and that’s good depending on who is saying it. smile.
They’ll watch him, and give him ultrasound in 6 months.
A friend writes, “Can they soften the valve”?

We both felt as if a steamroller decided not to bury us in mud! Wow.
Big, I guess one could say.

So day in honor of big,I’ll laundry list the “bigs” in my life.

Bill’s heart not too bad or heart valve
Reading pilisaka’s blog
Watching on You Tube _Devotional – Baha’i
Finding out the red light, third one in on the blinking model if you really want to know, is the result of perhaps a patchy connection to be replaced easily by trip to Best or Radio Shack.
Fireside (Baha’i chats) at Nelson’s last night. Steve and Juliana Licata and their two heavenly sons; music, entertainment; incredible talk
Meeting a new person; a muscian who heard of Baha’is on the net and from his spiritual leader who said, “Go.”
My walking an hour a day – El Moleno, a nice hill if you like puffing, but the way back a treat.
Friends, Mizz V helping me become lickietier and splickietier on the net.
Friends, Son, Daughter in Laws, Grandkids
The Women’s Room in Pasadena where homeless women have respite and the writing class I lead on Tuesday afternoons where the moments expand to tears and riotous laughter.
good writing.
Enemies of the People, Kati Marton, a great read (for Pasadena book club)
Waiting to read a wonderful book published in early 1900s on Muhammad, clear, insightful.
Gleanings. Baha’u'llah’s writings at the top. Always.
10 books waiting, some study, some fun, all fascinating.
Physical exhaustion, but a day of forced rest.

all of these are big in my young life, and now if I run into a pug today, walking his or her snorty self, i’ll know it’s a wondrous life.

Okay, Easter or any major holiday our wonderful landlady has all kids, and grandchildren and friends over; we’re always invited, but i feel vulnerable on those holidays; reminded we have no permanent place. But every other day, not a holiday, am grateful we have a roof over our heads, a comfortable bed, and we live in a nice pool house; small but we do it well.

still i get a hollow toothed feeling in my gut, exacerbated by Bill’s two upcoming appointment with Cardio Guy; and Neurologist. The adventures of being 75 and over. He’s still my pal, my buddy, my love, and vulnerability showed up big today in my scatteredness, trying to get every moment in life in today.

Computer network down today; came on at 5.30; friend asked why the switch to this blog. Because this blog has more life, vitality and a wider array of designs within which to blog.

We saw Crazy Heart for 2 bucks at the Academy; the theatre was crowded. Ran into Rose from my writing group, and her family, boyfriend, beautiful pregnant daughter and two dynamite grandchildren-girls who read and were friendly, and i was happy.

big is still not knowing in a Braille like fashion where the post sign is on this and then how to get it on nablopomo, without looking at my instructions and for missing dookhickies to click. Mizz V put some more on; i should be getting better.

I ran into the door, charging out of her today; big bruise on hand, head okay, so and we are having coffee with our young friends Neda and Johnnie; and that will be a time when safe is a feeling i’ll have stretched out up to the sky and all, and we’ll laugh and scratch, and i’ll come home and do stuff. They are picking bill and myself up.

So big was living without communing with my 400 or so intimate gang of friends, and getting back on just nas i was about to call and get hooked up to india to find out whats happening.

Will write more about Arts Rising but have to go now.

Recommending some books:

Drawn to the Rhythm, Sara Hall, a gripping, and exceedingly well-written memoir of a woman at 40 or so married, affluent, with children and a verbally abusive husband, who discovers sculling (single kayak type of boat); i am not skilled in naming appropriately some sports stuff; but this was a fabulous book which I found in my favorite used book store in Chico, California. Chico is about 2 hours beyond Sacramento. Also I read Life’s That Way, by Jim Beaver, of his marriage to Cecily Adams (daughter of Don Adams-Get Smart fame) and her incurring lung cancer; about their daughter Maddie, and also well written, insightful and just reflective of so many of the anonymous amongst us facing their Herculean tasks and soldiering on. One more; was another woman and boating; this was A Pearl in the Storm, Tori Murden McClure; rowing across the Atlantic. Yes, you heard that correctly. rowing across the Atlantic, and incredible gripper; what a fierce and wonderful soul.

We are back in Pasadena; think house in Chico selling-it belongs to Ralph who passed, the Ralph of “I’m dying as fast as I can,” at 91 fame; and we are settling his stuff as all kids pitch in and are gigantic help; it’s wonderful to see the Baha’i community, and for me, I am having a lot of healing work done. One is NAET which deals with allergies, and is terrific, my friend Vicki is a Practitioner.

I feel on a newly waxed bathroom floor a week or so ago, and now back in Pasadena, I go to the Altadena Healing Arts center-see Marilyn -last name escapes me at moment, and she is incredible, incredible. She does DNFT – nonforce. com stuff; and more than that. The Altadena Center – healing center is not new in my mind. Friends have raved about it for years.

When you first go in, the flowers in their small garden, seem to burst towards you in profusion of color, health and the whole place has an incredible sense of quiet beauty, knowledge, love, amazing.

So we will probably drive up to Chico Sunday; bill hurt his hand, and we were in emergency care Sunday at Kaiser-great people; we think while cleaning out our garage, dust from 1945 fell on an open cut on his hand; and he has had an extremely painful skin infection. I Googled it, and came up with the symptoms of Rheumatoid Arthritis, but his hands were not twisted, and his other hand wasn’t injured; so in my brilliant medical diagnosis by Google, I missed the mark. I’ve done this twice with my own stuff and half to laugh at myself.

He’s getting better; taking a nap; and that’s the story morning glories!

from John Kavelin’s blog on health – his health-good news

John and I want to share with you a truly amazing new development, due in no small part to the prayers and positive thoughts you continue to send. Please don’t stop!

John says: I have been wrestling for some time with this feeling of being between two worlds. The medical prognosis seems to have been incorrect. We have been told since the beginning that I just don’t have a lot of time left. So, I told Linda that treading water and holding my breath is exhausting. She asked me “What do you need?” I said “To move forward.” When we explored what that meant, it was to finish the design for a new Virtues Project website that began before my diagnosis. So, we went back to work!!!! We have been consulting with the web designer to finalize my part of the project, which is the design template. Then of course it will take Linda and Dan some time to complete the content.

My sight is better. My energy is more consistent. Linda says I’m sharper than ever in discerning the decisions being made now.
Brother Tommy and his wife Farahnaz are coming tomorrow and we look forward to fully enjoying their visit and doing lots of walking.

I have a keen awareness that healing takes many forms. At this point my physical and mental condition is surprising all of us, and especially the palliative care medical team!

It is wonderful hearing from all of you! It’s regrettable that I simply don’t have the capacity to write to each of you what my heart is feeling when I read your loving messages.

If I could define the three virtues most prominent in my life right now, they are Joy, Awe and Wonder.
Much love to you all from John, Dan and Linda

Input from Linda and Dan Popov regarding John-

John and I went to Saturday market on this cool, but thankfully bright Spring day. His stability is really good and he walks without assistance.

John says to tell you that the steroids that his brain requires to keep swelling down which he has taken for a year have added a lot of weight and he hardly recognizes himself in the mirror anymore. He is also growing a beard and I think he looks quite distinguished. The amazing thing, he says, is that during the year, other than occasional headaches, he has had little or no pain (other than what he calls “grab and stab” during hospitalizations). We will get some photos on Caring Bridge for you soon…

John was asked what prayer he gravitates to now. One is a long healing prayer and another is a Baha’i prayer for the midnight hour: “O Lord, I have turned my face unto Thy kingdom of oneness and am immersed in the sea of Thy mercy. O Lord, enlighten my sight by beholding Thy lights in this dark night, and make me happy by the wine of Thy love in this wonderful age. O Lord, make me hear Thy call, and open before my face the doors of Thy heaven, so that I may see the light of Thy glory and become attracted to Thy beauty. Verily, Thou art the Giver, the Generous, the Merciful, the Forgiving. — Abdu’l-Baha

With love from Dan, Linda and John

John Kavelin is in transition with his terminal illness, and his sister, Linda Popov, left a note on “Caring Bridge,” which is site on the net to inform everyone of someone’s illness, joys, challenges, and I thought I would post today’s (April 20, 2009) comment. To describe John would take more than a bucket of words, and my buckets are out today, so suffice it to say, he’s noble, valiant, highly creative, highly loving, giving, and we house sat for him in Pasadena, and the Pasadena Baha’is had the privilege of listening to John and Linda at a fireside at the Nelson’s several months ago.

He has the same kind of brain tumor Ted Kennedy has. John was also the designer of Mr. Toad’s Wild Ride at Disney, and won awards I believe for his Animal Kingdom in Disney World. He also designed stages, etc. in most major Baha’i conferences. He has a twin Tommie, and a sister Linda, and a brother-in-law Dan. Dan and Linda are living with him in his gorgeous place on Salt Springs Island, called by him Spirit Lodge. So here’s the note: love and prayers to all, and for John and his family. How’d we get so lucky to know them, and for us, in particular, John?

I want to receive Journal update notification e-mails.

Friends, you know from reading our journal that there have been a great many gifts and blessings in the last year for our family. One of the sweetest is the sacred time John and I spend most mornings together. This is an opening for John to discern and to speak whatever is on his mind or heart, and for me as well.
I am realizing that while his short term memory fades, his spiritual acuity is brightening. Yesterday he was saying that in his prayers, he is not asking to go or to stay, but for contentment with what is. He said “It is a commitment to NOW”. So, we are very much at peace living in the now of each moment and each day. Sending you all our love, Linda




February 27, 2008 – A year ago, I was walking with Dom and Vera in Weimar, walking across cobblestone streets, near Bahaus University where Vera getting her doctorate, arm in arm with both of them. Today, I sit here thatched headed, and Bill is nearby. He is totally without energy, lightheaded, and on antibiotics. he’s in Day blah blah of his Saga, which involved an almost all night sojourn at Huntington Hospital’s ER last Wednesday, to which valient friends showed up. Because of his Epstein Barr, his liver is enflamed, and he had a very bad reaction to previous meds. We are just grateful he’s home, and we find ourselves at night sitting on the couch just holding hands.

The above pictures seem to be my themes today, and I have been concerned about Bill whom I call Mr. Bill of late; I feel like a pug dog facing the door waiting for my owner to appear. Tonight, Maryam and I with an assist from Mona, giving the fireside at the Nelson’s on the role of education, but it’s so much more.

Prayers for Counsellor Aghdasi are in order; not sure in my haste to get this in I spelled everything correctly. The fortunate thing with prayers is spelling doesn’t count. Sandra just called and passed out on the floor of Target which we call Tarjay yesterday afternoon. I told her she probably was the dishiest blonde to hit the floor that day. She’s home, after ambulance ride to ER; friends right there, stitches in head and lip, and lived to tell the tale. The ER is still quite crowded she reports. Poor people are struggling with the flu down here.

Couldn’t resist the picture of Bill digging or ready to dig into ice cream. that was in Idaho when we were 24/7 with my sister, and neighbors provided ice cream and we all dove into same as if there was a shortage, or at least I did.

Okay that’s it for the day; wishing everyone well in their myriad footsteps hoofing around their metaphorical neighborhoods. Johnnie is leaving Friday for Haifa, and Ann and Stephan are on a plane, as we speak, going back to Dalian, China.

My twin, Elizabeth Leslie, died June 18, 2007. She won the long hard fight, and many events and happenings swirled around us, too numerous to comment at the moment. She died peacefully, family nearby. She was surrounded by loved ones, and Hospice, Hospice was incredible, and educative and loving. Lindsey, Matt’s wife (my nephew) and I were student nurses. We learned to crush ice chips with a hammer (ice folded up in tea-towel), we learned how a sheet placed under the patient’s torso, is called a draw sheet, and how two figures get on each side and lift the patient up. we learned how to lift someone from bed to chair, and i learned all manner of getting meds into my sister whom I call Liz. Matt, Lindsey, Bill and I were like a concerto, and since Lindsey is a trumpet player, I thought musical reference good. I have pictures or will put pics up later, but Matt did a montage of pics including some of Liz and I as kids on trycicles and the like, causing a lump in my throat at random moments. A lot was said; she was held, loved, prayed for, with, over, and tucked in the best way we all knew how. It’s a privilege to help a soul over the threshhold, and i’m glad Bill and i were there.

we were to go to seattle, but too tired. Instead, we are down with Ralph and Sue in Chico, and will get back to Pasadena in mid-July. Friends all over sent prayers and love, and how lucky can you get. So that’s it for now, a breaking of my blog silence. Wishing you all well, love esther

A lot of people need prayers. Some people need a “Happy Naw Ruz” also. So to my good friends who are Muslim and Baha’i, much love and joyous beginnings of a new year.
On the prayer front: certain my twin, Elizabeth, and a family in Pasadena. The great grandmother is our friend, Sara, and a long-time Baha’i. She’s lived in Africa, and China and been of great service to humanity. She’s in advanced stages of Alzheimers. Her daughter, whose name I’ll keep private, is one of the bravest, stand-up straight, tell the world what it’s like,” has had several strokes (she’s 50 ish) and cancer i think has returned. This daughter has a daughter who has a physical disability but who has taken to the helm and is caring for her grandmother in her apartment. They all live in the same apartment complex. The daughter went to the hospital yesterday; totally in pain, unable to eat for weeks, much more. Her youngest son who just graduated high school has been by her side. If ever this family needed prayers, it’s now, and loving help. So if you could that would be great. I will post a Healing Prayer as an image also. Blessings and love to you all; we are really part of one Great Fabric.

My two themes as indicated by this quote and the previous one seem to be about healing. Sometimes themes call to me, to us, for reflection and wishing the wellbeing of all I know. How is it with you?

“We should all visit the sick. When they are in sorrow and suffering, it is a real help and benefit to have a friend come. Happiness is a great healer to those who are ill.In the East it is the custom to call upon the patient often and meet him individually. The people in the East show the utmost kindness and compassion to the sick and suffering. This has greater effect than the remedy itself.You must always have this thought of love and affection when you visit the ailing and affected.” Baha’i Writings

From the Baha’i Writings:

“Looking after one’s health is done with two intentions. Man may take good care of his body for the purpose of satisfying his personal wishes. Or, he may look after his health with the good intention of serving humanity and of living long enough to perform his duty toward mankind. The latter is most commendable.”
“Between material things and spiritual things there is a connection. The more healthful his body the greater will be the power of the spirit of man; the power of the intellect, the power of the memory, the power of reflection will then be greater.”


Bill is 80% better, and we went for an early dinner at Donna’s SLIK (South Lake Italian Kitchen). We are really a crowd there, like Cheers, without the alcohol. Donna is a basset hound devotee, and has fabulous photos of her dog Blossom whose birthday party is December 19th; we all go, she rents a red carpet, i tell you. The pictures of Blossom grace one wall: Blossom with big hat and pearls; Blossom with this, and that, what a beauty. Sort of like a Vogue gallery for bassets. I first met Blossom 5 years ago, as she sat outside of the restaurant, belly sagging to the ground, an unashamed woman, and I said to her, “You look like you’ve had a full life Blossom,” and she agreed. 5 years later, Donna with another Basset, Blanche, and a thousand stories and events in our memory bank, i thought, I have been selfish. Put up a pic of a basset for goodness sake, so in honor of Donna, a pure lover of humankind; here’s a picture. Now i am going to put it in; this is an art i just learned today!

Taking a course through Wilmette Institute. I was hesitant, but it’s great as they encourage comments re imagry in the Writings. Reading Tablets of the Divine Plan, and various letters from the Universal House of Justice. Bill has hepatitis, we think caused by a bad sandwich, obtained unbelievably from a hospital cafeteria where he went to grab a bite as Sue and Ralph and I sat upstairs in an emergency room to get Sue admitted and also people had square plastic buckets to urp in and it was unbelievable; but we are relieved, it is not a blood disease.

Just finished Wake-Up Call Kirstren Breitweiser, one of the 9/11 widows. she had been Republican and the book details the journey and struggle a small group of 911 widows incurred. The writing is intelligent, honest, and very good. It was quite insightful.

John called from Haifa; he said a prayer for Bill at Bahji; had coffee with Amelia and then violetta joined us; i went home to check on bill. I walked two miles today; hooray; violetta came by; now have to stop nd study and hopefully get a netflix dvd to view in an hour or so. Soccer game of Jessica’s tomorrow; Nick came by with Border’s card gift and a card for Bill on his birthday; wow, so sweet!
He will pick me up at 8.15 so I can go see Jessica play soccer! hooray

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