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Tuesday, August 26, 2008 7:00 am CST
WOW!
I was surprised to see Ted Kennedy at the Democratic Convention last night. I had heard – last week – that he was scheduled to make an appearance. Just didn’t see how that could happen…
Other than the piece in the Chicago Tribune a few weeks back…I haven’t heard or read anyone come out and tell us exactly what type of brain cancer Senator Kennedy actually has. I certainly didn’t hear any mention of it last night amid all the convention coverage. All I heard was “brain cancer.”
Speculation is that his brain cancer is a glioblastoma…like Rory.
Like Rory… Ted had surgery.
Like Rory… “They got as much as they could…but couldn’t get it all. It’s very aggressive. It’s very invasive.”
Unlike Rory, Senator Kennedy opted for chemotherapy and radiation.
The docs told me “There is no cure. He will die from this. Chemo and radiation will buy him a few more months.”
We said no to the chemo and radiation and opted for alternatives. They offered us (me) hope. It was the right choice for us.
As I look back… Rory was remarkable after the surgery that removed as much cancer mixed with brain tissue as possible…his left temporal lobe…and resulted in a stroke.
He was remarkable.
Had it not been for that stroke … which affected his right side … it’s possible he might have been able to go back to school for a bit … or give a speech at the Democratic Convention … like Ted Kennedy.
He was doing so well … camping with us at White Pines, hiking, going up and down a huge flight of stairs (unassisted) a few weeks after surgery … that I thought there was a disconnect.
“The doctors have been wrong about so many things,” I thought. Perhaps they are wrong about his cancer?
Nobody told me … or if they did … it never sunk in to my already overloaded brain … that because the cancer had been removed (surgically) - of course, he’d seem “better.” For awhile. But the nature of the cancer – aggressive and invasive – was such that it’d be back with a vengeance.
It was.
I understand the talk of “Teddy back on the Senate floor in January! Teddy celebrating Obama’s victory in November!”
I understand it all. I really do.
I think we have such a fear of death – our own and people we love (especially many of us “Christians”) … and on a deep, core level we have such a fear of having to live life with the death of some we love … that we simply can’t go there.
So we pretend.
And we hope, and hope, and hope…
And we pray, and chant, and dance, and swirl, and scream, and shout, and beg, and…
I get it.
It’s what I did.
Hope and peace,
Tom
Monday, August 25, 2008 7:13 am CST
These words are meant for the eyes (and heart and head) of those who are learning to live with the death of someone they love. All others continue reading at your own risk…
Perhaps there is something to learn here…
For almost 19 years…I have held onto the belief that there is really nothing that separates me from a person who is not learning to live with the death of someone they love --- I mean really love. An intimate death, I call it.
I have believed that if that (lucky?) person listened to the words that came out of my mouth hard enough … read the right books … paid attention to the “Ann-Landers-type-help-columns” that seem to be everywhere … and even got in touch with the voice of their own heart … they would know the ‘right” thing to do. To say. Somehow they’d know what I needed… and they could take care of me.
That belief has caused me great pain.
And continues to separate me from many people.
People who have “fallen short” – based on my expectations. For care and support.
Four summers ago (how could it be?), when Rory was 13 … my entire family gathered for a family portrait at my brother’s house. A gift to my parents. My family is huge. I have six living brothers and sisters. Their spouses/partner. Kids. (There are 20-something nieces and nephews). And my nephew Danny’s kids…the next generation.
Each “little” family wore a different colored shirt.
Rory, Tom and Sean wore white
I remember feeling so strongly that day that something was missing. Someone.
Trici.
Erin – it seemed – had died so long ago…before most of the cousins were born ... that her absence didn’t feel so stark. But Trici had rubbed elbows with these folks for 13 + years. Her absence was heavy. For me.
And being thrown into the mix of “in tact” families… a mom and dad (and in our family - a mom and another mom), made the reality of our single-parent family even more pronounced. Painful. For me.
If that makes any sense?
Rory had his seizure a few short weeks after the family photo was taken.
I don’t think I ever ordered copies of any of the photos. Too caught up in the ups and downs of those weeks/months that followed. If I did get copies – I don’t know where they are.
The family portrait - surrounded by each individual families’ photo hangs in my parent’s house. They are great pictures.
When I look at Rory in the photos…I wonder…was the brain cancer growing? Seems like it would have to have been… He looks pretty normal, tho. Hmmmmmm.
Our family met again this past Saturday. This time at my house. Outside. Site of last year’s flood. The garden looks so beautiful we decided to use it as a backdrop. Amazing what can change in one year.
Another family portrait. For my mom’s birthday.
Sean and I wore red this time.
And as my friend Jim posed our family for the big group shot… of course, I couldn’t help feel something was missing. Someone.
Rory.
Hadn’t he just been with us (physically) for the last family picture? Wasn’t that just…yesterday?
Rory had rubbed elbows with these folks for 13 + years. His absence was … noticed and noted by me …
But not so so heavy.
This time.
For me.
I stopped fighting with reality.
Now I believe that those of us who are learning to live with the death of someone we love…really love…an intimate death…are different.
Not better. Not worse. Different.
We (I think it’s “we” --- I know it’s “me.”) have a need/desire to bring our dead people smack in the middle of the room sometime.
Some time. Not all the time. Some of the time.
It’s not uncomfortable for us.
It’s the NOT bringing them into the room that is so so so uncomfortable. And painful. And lonely. And isolating.
We don’t want to forget … and, on occasion, it’s nice to know that others haven’t forgotten either. It’s nice to hear that. We may know it intellectually…but it’s still nice to hear the words come our of someone’s mouth.
Isn’t it?
When I stopped fighting with reality… I realized that the person responsible for bringing Erin, Trici and Rory smack the middle of the family portrait space…was me.
And I did just that … in my mind and in my heart
I reclaimed my power. And was no longer looking outside myself.
And all is well.
Took me 19 years to get that…
Perhaps I’m a slow learner.
Hope and peace,
Tom
Saturday, August 23, 2008 2:46 pm CST
I’m happy to announce that I will be facilitating two workshops this fall and have one exciting speaking engagement. If you live locally, I hope you will consider participating in one of these life-changing/affirming workshops and/or joining us on Sunday evening, October 19th at Temple Beth-El for my presentation.
Please help me spread the word.
Tom Zuba – A Blessed Life
Sunday, October 19th from 6:00 pm – 8:00 pm.
Temple Beth-El
1203 Comanche Drive
No charge. Refreshments will be served.
The Power of Loss
Loss cracks you open. Death. Divorce. Disability. Job Loss. Aging. With each breath you take, your losses transform you. Consciously decide what role you will play in that transformation. Spend a day participating in a hands-on interactive workshop creating a sacred space. Come to a deeper understanding of grief and mourning. Recognize the gifts of denial. With a better understanding of the after-effects of loss, you can begin to live fully with those losses. Gently reconnect with your birthright…which is joy! Beverages provided; bring a sack lunch.
Saturday, October 11, 2008
10:00 am – 2:00 pm
Womanspace, 3333 Maria Linden Drive in Rockford
To register call 815.877.0118
$50.00
Honoring Life: Ours and Theirs
During this holiday season, reexamine the relationship you have with someone who has died. Whether the death occurred 30 year ago, three years ago, or six months ago, we often innocently rush to “close” those relationships. Join a small group of kindred spirits to create a safe, sacred space where you can excavate grief, mourn safely, and gently lean into POSSIBILITY by remembering and reconnecting with our loved ones who have died. Our openhearted intention will be to honor our own inner voice that we might step into the power of transformation and experience joy.
Tuesdays, November 18, 25 and December 2
6:30 pm – 8:30 pm
Womanspace, 3333 Maria Linden Drive in Rockford
To register call 815.877.0118
$65.00
Hope and peace,
Tom
Saturday, August 9, 2008 9:27 am CST
"And the day came when the risk it took to remain closed in a bud became more painful than the risk it took to blossom."
Anais Nin
I’m in the process of wrapping up the details for a speaking engagement I will have in Rockford. As of today, we are looking at Sunday, October 19th from 6:00 – 8:00 pm. Information regarding the location and sponsor will be forthcoming.
The name of my presentation will be:
Tom Zuba – A Blessed Life.
I met for breakfast this week with the sponsors and we brainstormed and heart stormed with the intention of finding our way to the presentation. One of the people present said something like: “I’d just like to know how you get up every morning? How do you get out of bed – in light of what you’ve lived through?” The other person added, “And once out of bed, how are able to be of service to other people in pain? I don’t think I could do that.”
And my presentation was birthed…
Mark you calendar for October 19th (it’s open to the public) and come back to the site for more details.
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After Trici died in 1999 … I said over and over and over again, “I don’t want to waste this experience. (her death) I want to be surrounded by people that are wiser than me.”
One of those people is Gary Zukav. It’s no secret that reading his book The Seat of the Soul was a major TURNING POINT for me. I’m happy to share that Gary has a new blog. To me, his words are always thought provoking and heart expanding. You can visit his blog at: http://garyzukav.blogspot.com/
While you’re there…check out the rest of his site.
And Byron Katie. One of my TOP FIVE TEACHERS. A practical, easy implementation of Eckhart Tolle’s message. Her website is www.thework.com. You can listen to a fascinating interview with her (and several other fascinating teachers) at http://www.masteringthepowerofnow.com/
And then there’s Oprah. As I said…I love her because she lets us see how complex (human) we all are. In addition to her groundbreaking 10-week class with Eckhart Tolle diving into his book A New Earth…she is making available to us – free – online – video of her radio interview show she calls SoulSeries webcasts. Her interview with Byron Katie will be available this Monday. August 11th. You can find it --- and her other webcasts by clicking SoulSeries.
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Our Door Cty vacation begins today. We’re off.
I am bringing my computer up with me. A first.
Sean is now a teen-ager…, which means he sleeps till 11:00…at least. My body gets up at 6:00 am. Regardless.
So…my intention is to use the 3-4 hours I will have each morning to pull my book together (finally)! I have never felt more ready.
The book – at this moment – is in three parts. A huge chunk I wrote after Trici died regarding her death and Erin’s death. The days before…the days of …the days, weeks, months, years following. The second piece is pulled from Rory’s Caringbridge site…that well-documented journey. And the third part is a series of Instant Messaging chats I had with a friend…in the weeks before Rory had his seizure…and after his death.
I remember sitting in the front pew at Old St. Pat’s Church on January 6, 1999 … Trici’s funeral … thinking, no – knowing – that “my whole life had prepared me for this moment.”
That’s how I feel now.
If you feel so moved…please send your love, light, prayers, energy in my direction so that I may be as open as possible…as I birth this project.
Hope and peace and gratitude,
Tom
Thursday. August 7, 2008 6:33 pm CST
I bought the new Sugarland CD. These words are printed on the inside cover:
“The day will come after mastering the winds, the waves, the tides and gravity, that we shall harness for God the energies of love. And, on that day, for the second time in the history of the world, man will have discovered fire.”
Pierre Teilhard de Chardin
Love that quote. I’ve read it before. My first introduction? Sister Karen had it in large letters decorating her science room in junior high.
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Oprah.
I love her because she is so human. So complex. Like all of us.
By paying attention to the way I react to her…I get a deeper understanding of what’s going on inside of me
The other night I listened to her interview with author and psychic Ainslie MacLeod. His book is called The Instruction: Living the Life Your Soul Intended.
All I can say is WOW. If you are ready for his message…WOW.
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One year ago today, Sean and I were in Door Cty. Our annual vacation. I’ve been going up every year – except for maybe two – since Erin died in 1990. In fact, our first treck up was a few short weeks following her death...
Sean has gone up every year of his life.
I remember asking the kids that first summer after Trici died…Do you really want to go up? (hoping and hoping they’d say NO!)
Of course, they said YES. “Tradition, Dad.”
And that first summer after Rory died… “We’re not going up, are we?” (Please, please don’t make me go!)
“YES!” Sean said. It’s tradition.
So, one year ago today we were in Door Cty. A friend had been watching the dogs for me. I was a little surprised to get her Voicemail message.
“There’s been a flood, Tom. It’s pretty bad.”
That was the beginning.
Living through a flood…like living with the death of someone you know…is something that must be experienced to get the full effect. You might think you know…but until (unless) you live it…you really don’t.
I had over 8 feet (8 feet!!!) of water in my basement. The boxes of Erin’s things – that Trici had lovingly packed so many years ago…and that I had transported to California and back…were completely submerged in water. Completely.
When Trici died… I kept two of everything. One for Rory. One for Sean. I wanted them each to be able to “touch” their mom through her things…two coats, two pairs of shoes (did she love shoes), two purses, two skirts, two blouses, two business suits. Everything was submerged.
Everything.
My entire house was surrounded by water.
I had to pull up my first floor carpet. Thankfully, I was able to save it. The padding had to be tossed…and replaced. But only after I had dehumidifiers and fans going for weeks…and washed everthing down with a bleach and water solution to ward off mold.
I needed a new furnace, a water heater, and air conditioner. All the duct work in my basment had to be replaced. All of it.
The entire process of physically repairing all that had been damaged took months – months.
Psychologically and emotionally it took longer.
Longer than I expected (like learning to live wth the death of someone I love).
My depression was deep. So deep… that for the second time in my life I tried an antidepressant. To help. It did.
To this day, when I get a scent of damp, moldy wetness…it brings me right back.
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My gardens this year are more glorious then ever.
Who knew? Seems as if the flooding was just what they needed.
A few plants were washed away by the force of the water. I don’t miss them.
And I’ve been amazed by the new plants that have popped up – here and there. Plants that I didn’t plant. I’m thinking the raging waters carried their seeds…and as the water receded…the seeds found a safe, welcoming place to grow.
I like the new plants.
Isn’t life complex?
And simple.
Hope and peace,
Tom
Wednesday, August 6, 2008 6:52 pm CST
I hated this picture for a long time.
It looks different to me now.
I see a smiling, happy boy.
He’s wearing the famous Australia shirt that his friend Evan gave him for his 13th birthday. He wore that shirt all the time…
He’s sitting on the zebra-striped sleeper sofa I bought for our family room when we moved from Northern California … back to my hometown of Rockford…six years ago this month. I wanted a sleeper sofa so that when the kids had friends over…there’d be extra sleeping space.
To his left is the Japanese-inspired pillow his Aunt Linda gave him.
To the observant eye…you can tell his right arm is kind-of-limp. (Caused by the stroke.) His face is bloated from the meds. And of course, he’s wearing the telltale yellow bracelet.
Cancer.
The bracelet I took off his dead body and put on my own wrist. Still there.
It’s the picture that his friends chose to put on the “Rory Forever T-shirts” they all wore after he died. I loved seeing those kids wearing their Rory T-shirts. I loved sitting across from them…with Rory smiling back at me.
But I hated that picture.
Because I knew the back-story.
As I said…it looks different to me now.
Perhaps – I’m different now.
I see a smiling, happy boy.
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Rory spent his last weeks on that sofa. In the center of our family room. He slept upstairs in his own bedroom, but days (which sometimes began in the early evening) were spent on the zebra sofa. And when he could no longer walk down those stairs by himself…we helped him. And then I carried him. Up and down. It was my pleasure.
And then the day came when I simply couldn’t carry him downstairs anymore. And he never came down again. Until the paramedics carried him down that last night…
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After Rory died, Sean said that I was too boring and the house was too quiet. I agreed. I’m sure I was boring (consumed by grief) back then…and I know the house was quiet.
So we got a dog. Mandy.
And a year later we got another one. Molly.
And they match the zebra sofa. Mandy is black. Molly is tan.
And Rory’s sofa became Mandy and Molly’s sofa.
And our house wasn’t so quiet any more.
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Today was the day to see about getting two new cushions for the zebra-striped Rory/Mandy/Molly sofa.
They had had it!
So I visited the shop of the man whose daughter was a year older than Rory at West. The man who brought his beautiful celebrity portraits to the pancake breakfast fundraiser Rory’s school friends and their parents held for us. In addition to being an incredible artist he also reupholsters furniture.
We picked out a fabric … to compliment the zebra stripe.
And he and his wife asked how Sean and I were doing. I know what they meant.
He told me about his daughter. She’ll be a senior next year.
“She still wears her Rory T-shirt,” they said. “All the time.”
The “Rory Forever T-shirt” with the picture of Rory on it.
The picture I see differently now.
Because I’m different.
Hope and peace,
Tom
Tuesday, August 5, 2008 4:44 pm CST
One of the things I’ve come to believe (experience) is that our society has a preconceived notion (idea) of what it’s like to live with the death of someone we love.
That notion (idea) is woven into our fabric – our music, our literature, our movies, our television shows, our conversations. We inhale that preconceived notion (idea) … probably from a time even before we are born…because our mother and father inhaled it, too.
We can’t help it.
We don’t know any better. We rarely question it. It’s innocent.
And that notion (idea) … of what it’s like to live with the death of someone we love … can cause great pain. At least it did for me.
I’m halfway through The Last Lecture. Like many have said…it’s a fast, fascinating read.
On page 25 these words jumped out at me.
“Although my children will have a loving mother who I know will guide them through life brilliantly, they will not have their father. I’ve accepted that, but it does hurt.”
“… they will not have their father”
Part of the unquestioned, preconceived notion (idea) that we so innocently inhale.
“I’ve accepted that, but it does hurt.”
How could it not hurt?
As Byron Katie asks…is it true?
Is it true that they (we) will not have their (our) father (mother, sister, brother, spouse, child)?
Is it true?
Is it true?
Can we know for sure that it is true?
Question everything.
If you can.
Hope and peace,
Tom
Monday, August 4, 2008 7:50 am CST
I bought The Last Lecture shortly after Randy Pausch’s presence was made known worldwide via YouTube and Oprah. I haven’t read it yet…although I know many people who have been touched deeply by his words and his life.
Randy died July 25th…the day after what would have been Rory’s 17th birthday had he lived.
I taped the 20/20 special about Randy that aired a few days ago. Watched it this morning. It is definitely worth seeing…if you can find it somewhere on the Internet.
Randy’s wife Jai said two things (more actually) that struck me. At one point in the interview she said:
“I have everything I need.”
I get that. I do too.
The voiceover said – that after Randy finished his “Last Lecture” – because it was Jai’s birthday…they wheeled out a cake and sang Happy Birthday. Jai came up on stage to be with Randy, hugged him, and whispered:
“Please don’t die – all the magic would leave with you.”
I get that. I thought that too.
Once.
I’m hoping somehow, someway Jai finds this site.
She and Randy have done a glorious job of cracking those of us that are ready - open. They gave us more then a glimpse of living life to the fullest. Every day.
A terminal diagnosis can do that. Crack us. Open.
Death of someone we love cracks us open, too. Big time. The biggest, perhaps.
Cracks us in a million little pieces.
And (in my humble opinion) the teacher can only take us as far as he/she has travelled.
Randy and Jai travelled the first part.
The second part began (officially) on July 25th. The day Randy died.
I think (hope) that the surprise for Jai (all of us) is the realization that the magic did not leave when Randy left his physical body.
That is not possible.
The magic intensifes.
Big time.
It can’t be any other way.
Hope, peace…and magic,
Tom
Sunday, July 27, 2008 8:23 am CST
Of course I go back and forth and back and forth about just how “public” I want to be on this site. I have a friend who used to remind me…”when all else fails…be honest.” Such great advice. Clearly, people can feel honesty. We respond to honesty (most of us) at a gut level…
I had coffee Friday morning with a woman I had never met before. She moved to Rockford about 3 years ago due to her husband’s job change…leaving a wonderful circle of friends in Michigan...including a friend whose husband had just died from cancer…following the death just a few years earlier of that same friend’s 8-year-old son. Upon arriving in Rockford, the woman I had coffee with met the mother of a classmate of Rory.
“Visit www.tomzuba.com.” she was told. “His words may be comforting to you.”
So she did. She told me Friday that she read and read and read and read. “I’ve read every word you’ve written. You’re an inspiration.”
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Yesterday, I was in Chicago with members of my mom’s side of the family. My oldest cousin Cathi hosted the gathering. My mom’s cousin’s son Paul and his family were visiting from England.
In the kitchen, Cathi pulled me aside to let me know that “you have just no idea how many people you have touched through your website.” She told me about a couple in her Beverly neighborhood who are learning to live with the sudden death of their young son last July. She told me that the couple have visited this site…read some of my words…and felt something
Something resonated.
“The husband, too,” Cathi said. To think a man could express such emotion and “go there”…
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I think (believe) that the way I (we?) interpret/expereince the world is simply (or not so simply) a reflection of the way I view the world from my core…consciously and/or unconsciously.
That’s a loaded sentence…so you might want to read it a few times to see if it makes any sense???
I am amazed to learn how people perceive me… my day-to-day life… the way I have dealt with – and am dealing with – “learning to live with the death of my daughter, my wife and my son.”
Any one that has read my words knows how much I value the weight of words. I try so hard (most of the time) to choose words wisely and carefully…I try to say what I mean to say.
My daughter is dead.
My wife is dead.
My son is dead.
Yes, yes, yes…all true.
I bought three caskets. I have three death certificates. I said “Time to remove the ventilator tube” … not once, but twice.
I left the hospital … shoulders crunched over, head down, family members huddled around me… not one time, not two times, but three times…leaving the dead body of the person I loved the most at that time in my life… on a hospital bed. Not having the strength, energy or desire to even contemplate…what happens to their body now?
It’s all part of the walk I’ve walked.
It’s not the entire walk though… there’s been so much more.
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There were 754 visits to this site July 24th…Rory’s 17th birthday. People came looking for something…
There were 128 visits the day before.
178 visits the day after.
Rory’s birthday was the BIG DAY for site visitors.
Remember…I have no idea who the visitors are…
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I’m not that different (if there’s any difference at all) from the anonymous people (and you know who you are) who (thankfully) visit this site…searching for something…
I think it’s important to share more of the truth.
When all else fails…tell the truth...
I received an email from my nephew marking Rory’s 17th birthday. He said:
“I`m sure that I am one of a thousand who have chosen to email you today.”
No…I did not receive a thousand emails marking Rory’s birthday. I received less than ten.
A friend emailed:
“i find myself thinking about your beautiful children and family every day and hoping and wishing you are ok - i can picture you and if you are alone in your home, surrounded by your memories and pictures then my heart aches for you. How you go on when you are missing Rory and Erin and get through those days like his b-day and her anniversary is beyond me, but I`m so happy you somehow, someway do for you have no idea how you are affecting those of us who are witness to it - who are secretly afraid it may be us........................”
I am okay. I am better than okay. I feel very, very, very blessed to be living the life I am living. Have I always felt that way?
Of course not. Remember the dead daughter, wife, the most amazing son who died from brain cancer. Brain cancer!!! I’ve picked out the three caskets…
Of course, I have not always been okay.
But today…I feel okay. Better than okay…
I’ve done a lot of “work.” The hardest work I’ve ever done.
Am I alone in my house with my pictures and memories? …no, no, no. (Although if I was that would be okay too…if that was exactly where I needed to be.)
My pictures, my videos, my memories are all part of the journey…but they are not the entire journey.
Sean and I usually hear from one member of Trici’s family on these anniversary dates (her mom is still alive and she has 4 living sisters)… and part of my journey is trying to accept that and make peace with that. Trici’s sister wrote:
“On Rory`s 17th birthday, I still can not believe he is not here with us. Life is so unfair sometimes.”
Spend a day in my house. A full day. It’ll quickly sink in that Rory is not here (physically) with us. If you’re still not able to “go there.” Into the darkness of the truth that Rory died on February 22, 2005 after a 6-month journey – the likes of which I had never seen before… I don’t know what to say…
And for me…the words “Life is so unfair sometimes” are not on my radar screen.
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I did not hear from all of my own family members on July 18th…the anniversary of Erin’s death … nor did I hear from all of them on July 24th … Rory’s 17th birthday.
I never have. Does it surprise me? You know…it (still) kind of does. Is the omission so painful that it stops me in my tracks and ruins my day? Not anymore. Progress on my part!!!
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Why share this information in a public way?
Because it’s the truth … at this moment … as I’m experiencing it.
And I know … it’s similar to the truth and the experience of many, many, many of the anonymous, nameless people who visit this site. People who are learning to live with the death of someone they love. People who come to this site searching for something…
I have felt alone and lonely and misunderstood and overlooked and forgotten and “not-seen” many, many, many times over this 18-year journey of mine.
I have felt many, many other things as well…comforted, loved, carried, lifted, supported, cared for, prayed for, thought of, held, etc. etc. etc. … and I have written much about that.
But I have felt alone.
And…from the chair I am sitting in this morning … the gift of my own “aloneness” is that I can open my own heart … through these very words … so that you, the anonymous visitor … might not feel as alone as you do this morning.
Because I don’t think we were created to make the journey entirely on our own.
I think (know in my heart) that we need to show up for each other.
When we are able.
And today…I can show up.
So I will.
I did.
Hope and peace,
Tom
Friday, July 25, 2008 7:05 am CST
We watched video of Rory last night. The last video I had of him. His 13th birthday. One month before his seizure. When he seems to be at the apex of his life. (In retrospect, I guess he was.) Right before he started his own inward journey … before he left his body.
And then we watched Christmas of ’04. I knew it would be my last with him. Unless there was a miracle. And in the deepest part of my gut…I knew the end of this chapter. No miracle. At last not the miracle that ends with Rory being physically healed.
We looked at photos.
The most difficult photos for me to look at … have been the ones taken after his brain surgery. After they removed his left temporal lobe. After the stroke.
But when I look at the photos now…I see his smile. And the twinkle in his eye. And I remember that he would laugh at my corny jokes…or, at the very least, dramatically roll his eyes followed by an “Oh Dad!”
There’s something about going all the way into the darkness. To the bottom of the deep, black pit. Settling in there for a time. Marinating. Rolling around in the bleak despair. (I know the message we inhale is the complete opposite - that we should avoid feeling these feelings at all costs. Be happy! Now!)
But, I think…that until we summon up the courage (or open to the grace) that allows us to enter the darkness… we use all (or most) of our energy to keep the protective walls up. Walls we consciously or unconsciously build to “protect” us from our feelings…to protect us from ourselves.
And the walls separate us. And something seems to be lost.
And I know we’re each doing the best we can. That’s the mystery – to me.
As I said…Now, I can see his smile. And the twinkle in his eye.
Hope and peace,
Tom
Thursday, July 24, 2008 8:26 am CST
As anyone who has lived through the death of a young child knows…”they"… the experts tell you to wait at least a year until you make any major-life-decisions…like having another child. I couldn`t.
When Erin was born in 1989, I quickly learned to love being a family of three. Not just a couple…but – now – a family.
When she died so suddenly in 1990 … in my ignorant-innocence, I felt like she was lost to us … that we were no longer a family … and I so desperately wanted to be a family.
Reluctantly, Trici surrendered to my desire to have another baby ASAP…and three months after Erin died…on Thanksgiving morning…we found out we were pregnant.
Due a year to the day of Erin’s death – July 18, 1991 – Rory (the red king) waited and carved his own path…entering this world on July 24, 1991…17 years ago today.
Rory – throughout his life – had many, many best friends. Often at the same time. Corey was one of those friends.
At Rory’s Memorial Service…Corey’s mom wrote these words:
“He walked in a parade. Friends, creativity, a quest for knowledge, humor, were all part of the parade. I love you Rory. You used to call me mom when you were at our house. It made me so happy. I allowed myself to believe that I was the only one you said this to – even though I suspected otherwise. I love you baby.”
Reading Ann’s words make me cry … every time. I guess they’re tears of gratitude because she saw him. She took the time to see who Rory was. And he was such an amazing creature.
Despite learning to live with the death of his mom when he was seven … or maybe because of it … Rory was willing to go out on a limb and love people. BIG TIME. And that love was returned to him many times over.
What more could a parent want?
I love, love, love these three pictures of Rory.
The first was taken in 6th grade. Rory is with a teacher he loved…Mrs. Hamlett. (He loved all his teachers at West.) I love it because you can see he is trying to perfect his big, broad Rory-smile for the camera.
By now…that smile is perfected. The second shot was taken on the 4th of July…about 6 weeks before his seizure.
And the 3rd was taken about 2 weeks later…at the end of Camp Lone Oak. He’s pictured with two more of his “best friends” Ben and Evan.
Happy 17th birthday my most amazing son.
Thank you for letting me be your Daddy.
I love you!
Friday, July 18, 2008 7:45 am CST
"Life is not a random event. It has purpose and provides for the unfoldment of a divine plan with opportunities to make choices and decisions in every moment."
~Collin C. Tipping
Collin Tipping wrote a remarkable book called “Radical Forgiveness” that I read when I lived in California. It’s groundbreaking, I think. Like Byron Katie…Collin’s work helped me totally shift the way I look at life.
Of course…I have yet to master all the concepts presented in Radical Forgiveness…as those who I have yet to forgive can attest.
________________________________
I thought it would be different.
Trici (like my mom) was very much the keeper of the flame. It was Trici who was determined to remember Erin’s full life…and not have the focus forever be on her “disastrous” death. It all felt familiar to me…my mom had done the same with my little brother Danny…who was born 45 years ago tomorrow – July 19th…and died a few short weeks later, the day after his baptism.
…It felt natural to keep the photos up. To view the videotape. To work Erin life’s into the daily conversation of our life.
And as a result - Rory grew up knowing much about his older sister. So did Sean.
We were (are) a family of five…no doubt about it.
______________________________________
Looking back – Trici and I talked about Erin the same way we talked about Rory and Sean. The way, I think most parents talk about their living children.
Remember this? Remember that? I used to love it when he did… It drove my crazy when she did … etc., etc., etc. I don’t think an observer…who might be listening in to our conversation…would have known that Erin was dead. She wasn’t to us. She was very much alive – and, as I said, part of our family.
_________________________
Erin was one of four cousins born that year.
Erin on January 2nd. (The oldest, the wisest, the funniest, the most beautiful…I thought) and Sammy was born on May 4th and Megan on May 23rd. Pat at the end of August.
I think we thought our families would hold the space for Erin … in a public way. I know I did. Her physical absence was so tangible to us…especially when the family was together… when we were actually in the midst of “what was once four was now three.”
And on those “special” occasions … that we missed out on … because our daughter was dead … but that we were probably even more acutely aware of because of her physical absence…we thought there’d be a space… a public space.
The first day of kindergarten.
Starting high school.
Turning 16.
Getting a driver’s license.
Homecoming.
Prom.
High school graduation.
Off to college.
I imagine there was – on many, if not, all of these occasions ... a private space – created and held for Erin in the hearts and minds of her aunts and uncles … perhaps her cousins … and most certainly her grandparents.
As I’ve said over and over again though… it’s in going public that we can heal. Together.
And I don’t think we’ve learned how to go public yet.
Brings up too many feelings. If I talk about it. If I take a risk and share with you what I’m really feeling about your dead daughter…I may become vulnerable, fragile… even human. It might bring me to tears. I might feel sad, or angry, or confused, or lonely, or disappointed…or out of control.
So…I’ll stuff it. Pretend. Repress. Avoid. I’ll avoid talking about it – at all costs. Even the cost of our relationship.
Many have discovered that by throwing ones self into work, into alcohol, into eating, into television, into sports (insert any of the many things we’ve become addicted to) … we can avoid the feelings.
It’s too painful to go there.
Avoiding it all seems easier. Less painful.
_________________________________
The gift for me … of the madness … at the age of 51 … is the realization that the person responsible for keeping Erin’s presence alive for me … is me.
Seems simple.
But for so many years – I kept looking outside of myself.
I didn’t know any better. Like all of us, I was doing the best I could,
Forgive me.
Hope and peace on this most magnificent day. The anniversary of the day my most magnificent daughter accomplished her mission…which, of course, was all wrapped up in teaching us how to love each other … and returned home.
I love you Erin. And I am so happy you choose me to be your Daddy.
Thursday, July 17, 2008 4:51 pm CST
Love bears all things
Love believes all things
Love hopes all things
Lone endures all things.
I was a complete and total basket case. Trici took me by my shaking hand and led me around like a puppy. She made all the decisions. That was fine with me.
She selected the verse above for the cover of the booklet handed out at Erin’s funeral.
She selected the songs.
“And he will raise you up on eagle’s wings, bear you on the breath of dawn, make you to shine like the sun, and hold you in the palm of His hand.”
(There’s that “resting in the palm of God’s hand-thing” I’ve held on to…or come back too – I’m not sure.)
Same song was selected for Bobby Mayhall’s funeral today.
On Eagle’s Wings.
____________________________
Mrs. Donahue tapped me on the shoulder. She was sitting right in back of me. She and Mr. Donahue and all the Donahue kids lived in the 200 block of Paris. Donahues were close to State Street. Mayhalls were close to Rural. Tom Donahue…who Mrs. Donahue told me would be 55 now…died. Maybe a year ago last winter.
She knows.
She asked how I was doing. Good, I said. I feel good.
Eighteen years ago tomorrow my daughter Erin died, I told her. She’d be 19 ½. It was a hot, sunny, sticky day like today.
Mrs. Grizzanzio came over to talk to Mrs. Donahue. She greeted me. Mrs. Donahue told her, “It will be 18 years tomorrow that Tom’s daughter Erin died.”
“I was there”, Mrs. Grizzanzio said.
“I was there, too”, Mrs. Donahue said.
___________________________
I waited after the funeral. I wanted to say hello to Mrs. Wilson. Mrs. Wilson’s gorgeous granddaughter Allie was shot and killed three years ago this coming autumn. Three years.
She knows, too.
She told my her brother’s birthday is July 18th. “It’s never been hard for me to remember the day Erin died. I still keep her memorial card in my purse,” she told me. “That beautiful little girl on the rocking chair. I think of her all the time.”
_________________________
I think we live in a crazy world. Eckhart Tolle says we’re insane… asleep. Most of us haven’t awakened --- yet.
Death allows (jolts) the awakening – if (when) we are open to it. Even a little.
We spend so much time talking about crazy things. The game. The score. Britney. The price of gas.
Not enough “real talk" as Trici called it.
I had forgotten that Mrs. Donahue and Mrs. Grizzanzio were there.
I didn’t know Mrs. Wilson carried Erin’s Memorial Card in her purse.
It was so nice to hear. To know that she’s not forgotten.
We don’t talk about our dead people enough.
_____________________________
Trici designed Erin’s Memorial Card.
This photo on one side.
This e.e. cummings poem on the other.
I carry your heart with me
(I carry it in my heart)
I am never without it
(anywhere I go you go; my dear; and whatever is done by only me is your doing, my darling)
I fear no fate
(for you are my fate, my sweet)
I want no world (for beautiful, you are my world, my true)
And its you are whatever a moon has always meant and whatever a sun will always sing is you
Here is the deepest secret nobody knows (here is the root of the root and the bud of the bud and the sky of the sky of a tree called life; which grows higher than soul can hope or mind can hide) and this is the wonder that’s keeping the starts apart
I carry your heart
(I carry it in my heart)
_____________________________
Mrs. Mayhall wasn’t at her son’s funeral this morning. She was at the hospital. As a patient.
Her son just died.
Her heart is shattered. Life as she knew it destroyed.
The most “normal” thing about the day… to me…is that Mrs. Mayhall is in the hospital.
Her baby just died.
Hope and peace,
Tom
Thursday, July 17, 2008 7:42 am CST
We grew up with the Mayhall’s. We lived in the 400 block of Rome Avenue and they lived in the 500 block of Paris Avenue. They lived closer to the end of the “big hill.” Not the “little hill” which was where our alley met the cross street. But beyond the little hill…across the cross street…and whooooosh…all the way down the big hill…flying on our bikes or holding on for dear life to our sleds.
Diane. Johnny. Bobby and Nancy.
Diane was a year younger then me.
Johnny was my brother John’s best friend.
Bobby and Nancy were “their” little kids. “Our” little kids were David, Mike and Ann Marie.
Mrs. Mayhall reminded me of Doris Day. Tan. Blonde hair.
At Bobby’s wake last night…Mrs. Mayhall – with tears in her eyes – said to me, “Bobby just had a big, old heart attack and died. Can you believe it?”
No. I can’t believe it.
I’m not sure when it became a custom to scramble right after the death and make picture boards…something I’ve never done…but I took the time to look at each photo. And did it bring me back. Smack back to the center of my youth. And there was Bobby. Smiling. Laughing. Giggling. Grinning.
And this morning…as I type these words…another mother and father are preparing for the funeral of their child. Brothers and sisters are getting ready to walk behind their sibling’s dead body lying in a casket. Aunts, uncles, grandparents, friends and neighbors are wondering…”What do I say now? What can I do to help?”
Others may be thinking…I should go…but I’m too busy today. I’ll send a card instead.
_____________________________
This is my little girl, Erin.
Who died at 18 months, 18 years ago tomorrow.
This is how I remember her. What she looks like when I think of her. Every day.
As I said…she was in the moving-from-baby-to-little-girl stage.
____________________________
I would not want to be in Mrs. Mayhall’s shoes - waking up today (if I had slept at all) knowing I was burying my baby.
On the whole, we do such a crappy job of supporting those of us who are forced to learn to live with the death of someone we love.
I hope, hope, hope that is changing.
____________________________
My classmate, Wally Schultz died “awhile back.” To be honest, I can’t remember exactly when. I’d say within the past 2 years….maybe not that long. At the time of his death…I mentioned his name on this site…and I heard from his family.
I remember seeing Wally and his wife at the Chicago Botanical Gardens when Trici was alive…so that was over 10 years ago.
Last night, as I signed my name in the Guestbook at Bobby Mayhall’s wake (I NEVER include my address anymore, because I think it’s absurd to expect the family to send thank you notes) I saw a few names above – Margaret Schultz.
Margaret was a good friend of my sister Mary. There were four best friends. Mary, Margaret, Marilaurice and Jill.
Margaret was at Bobby’s wake with her elderly parents.
The Schultz family had “crossed over.” They are learning to live with the death of someone they love.
They know – first hand – the importance of showing up. As Fr. Cusack said at Trici’s funeral…”You just have to show up!”
Hope and peace,
Tom
Wednesday, July 16, 2008 8:27 am CST
Trici always said that she hoped it would be Erin’s complete life we remembered and celebrated…instead of focusing on her death.
Last night I found the birth announcement we sent out when Erin was born 19 ½ years ago.
“See what love the Father has bestowed on us”
God’s love surrounds us – we see it everywhere – But for us, it is expressed most beautifully in the birth of our new baby!
Erin Brennan Zuba
January 2, 1989
7 pounds, 1 ounce
Tom and Trici
___________________________________
I wish we had dated this piece. I’m not sure when we created it…perhaps for the 1st anniversary of our daughter Erin’s death? Trici wrote the into, I typed it on our computer, and we gave copies to members of our family and a few special friends.
I’m not sure if I’ve posted it on this site or not.
It’s what some would call “new-agey” I guess. Although new age stuff doesn’t seem so new to me anymore. It feels true.
At times I forget how open and progressive Trici was w/her own spirituality…although, I do recall that her sisters referred to her as a “mystical-Catholic.” I think that’s the term they used. She was open and searching. And her most-loved daughter’s sudden death 18 years ago certainly propelled her onto a fast track – searching for answers.
This is what she wrote:
This letter was excerpted from On Children and Death by Elisabeth Kubler-Ross. It was written by the aunt of an eight-month baby girl named Erin who died in a car accident the year before. That Erin’s mother passed the letter on to Kubler-Ross, sharing her wonderful vision of the meaning of her baby’s life. When I read it late one night the parallels to our Erin’s life struck me as incredible, going far beyond their shared name. Tom and I have often talked about the mission of our beautiful creature with the dark, old eyes. So, this may very well be her way of telling us something once again.
Once upon a time, there was a little angel who lived in God’s light. She was wise from living many lifetimes on earth and from her talks with God and other angels in between times.
As the saying goes, she was an ‘old soul’ whose progression to oneness with God was nearing perfection, but she wished to make one more journey to earth. Her grandmotherly feelings extended to two beautiful souls who had come to earth for further lessons in compassion, forgiveness and understanding. The little angel had been with them on earth before and felt she could influence them by joining them one more time for a brief sojourn.
While looking down from heaven she said to another angel, “I will join them but for a very short time, otherwise, my purpose will not be served.’
Her angel friend said, “Are you sure you want to g o through the pain of passing again to help those two? I know you love them and have been with them many times, but you are so near to oneness with God now you really don’t have to go.”
But I must said the little girl, and she did.
Oh! What joy she brought to the parents. They shared in her birth and marveled in her beauty.
Her grandparents and her great-grandparents saw that her eyes reflected the wisdom of the universe, and they pondered onto themselves on how such maturity and sense of being could be in such a tiny body.
Oh! What an angel! Said great-grandfather. Oh! What a darling said great-grandmother. Oh! How precious said grandmother and grandfather. Oh! What a glory to have you! said her aunts and uncles as they romped on the floor with the little angel.
And then it came time for her to take leave and withdraw from earth. The plan she made while in heaven for a sudden passing was an unalterable as the seasons and the tide. She had chosen a day recognized by many on Earth as Good Friday. This was an appropriate day, because her good friend Jesus had died on this day hundreds of Earth years before. She and Jesus had often talked about soul progression and how hard it is for some people to grow. Jesus had taught her that when a person reaches oneness with God, that person experiences peace that passes all understanding. The little angel wanted her loved ones to experience this, and her short life was for that purpose.
She knew from ages past that recriminations block growth and foul relationships, and that hate absolutely brings negative results. She knew that some situations offer opportunity to show compassion, if people will reach out to each other with loving hearts. (She knew that love is all there is.)
It is for this she wished before going into a deep sleep and resting in the preparation for her ascension once again into God’s light.
Hope and peace always,
Tom
Monday, July 14, 2008 9:26 pm CST
This Friday, July 18th marks the 18th anniversary of my daughter Erin’s death.
18 years.
“It” all started five days before. July 13, 1990. Friday the 13th.
Erin woke up with a fever. Because Trici and I had busy days at work, we trotted off to daycare and left Erin with Marilyn…Trici and I continued on to our jobs downtown.
At day’s end… Erin couldn’t have been feeling too bad. Trici and I left her in the care of our niece Mariah and we went out for Mexican food. I’m sure we had a marguerite or two as well.
It was the next day… Saturday the 14th when we started to get nervous. Erin was in pain. She would put both hands to her abdomen and say “pee-pee, pee-pee.” It looked like there might be blood in her stool and her diapers had an unbearable stench.
We drove her to the ER at McNeal Hospital in Berwyn … and after what seemed like forever… they sent us home.
“We think she has a kink in her intestine that may be causing her pain. It’ll probably go away”
“Buy some Pedialite and make sure you give it to her through the night.”
________________________________
Another one of the “someones” I heard from recently – as a result of this site - is a friend I knew at NIU during our college days. We were reacquainted some years later at our church, Old St. Pat’s in downtown Chicago.
This ‘someone” told me she has been following my journey since the Mary Schmich article:
“Just wanted to thank you for your honesty. For awhile there I thought you were some kind of Super Dad taking all this in stride but your gut wrenching experiences I can empathize with. No I haven`t experienced as much death as you have but I have had much struggle with contentment.“
I’m certainly not a Super Dad.
The pain I have lived through is unimaginable. Part of the reason I want to finish my book is so that my journey is well documented. It is unbelievable…as those of you who have accompanied me on parts of it know. So…unbelievable … and so almost indescribable … that I know I have tucked pieces away in safe places. And on occasion – like an anniversary – I visit those safe places - to reconnect and remember.
Who we were. Who I have become.
It’s not torture. It’s profound. And sacred. And I’m in awe of it.
18 years later…
Mostly I remember my sweet, funny, talkative, bold, confident, beautiful, big-eyed, whistling, dancing, singing baby girl…who was just turning the corner and becoming a “big girl” when she died.
Pictures. Did I take pictures! And video. Trici gave me a camcorder that Christmas before Erin was born and I was forever behind the camera documenting her every move...and her non-moves as so often is the case with first-born children.
Hope and peace,
Tom
Sunday, July 13, 2008 10:34 pm CST
According to this Chicago Tribune reporter Ted Kennedy’s brain cancer is glioblastoma…the same type of cancer my son Rory had.
Fascinating article in today’s Tribune.
I can’t begin to imagine how Curtis King is going to survive day-to-day all alone.
Brain cancer, and poverty too
A Chicago man lost his job, home, insurance coverage after being diagnosed with glioblastoma. Now he pins hopes on free care.
By Judith Graham | Chicago Tribune reporter
July 13, 2008
Curtis King has lost almost everything since being diagnosed with a brain tumor. His job. His income. His room in a South Side motel. His belongings—most of them thrown out on the street. King, 45, has glioblastoma, the same cancer Sen. Edward Kennedy is confronting in Boston with a team of influential associates, friends and family at his side. In Chicago, King has no one. He lives in a homeless shelter in a room with five strangers, alone with his fear. When he can, King follows what`s happening with Kennedy on the Internet, trying to pick up bits and pieces of information that might help him save his life.
Theirs are the two faces of health care in the U.S., men who have virtually nothing in common but an illness that has no cure.
Kennedy has the best medical care this country has to offer, access to any specialist of his choosing and resources to pay for whatever treatments are recommended.
King relies on charity care at Stroger Hospital—Cook County`s medical provider of last resort—along with handouts and the traits he acquired growing up in Cabrini-Green: toughness, tenacity and a determination to never give up.
"I`ve been shot, beat up, stabbed. I`ve been through a lot," said this wiry man with deep scars—one from a golf club, the other from a baseball bat—punctuating both eyebrows. "But this cancer, it`s worse than all of that."
King`s confrontation with the disease began in early March, when he awoke one morning feeling like an insect had alighted on a twitching eyelid. It was an early sign of a seizure, though he didn`t know it at the time.
At work at a South Side manufacturing plant a few hours later, King was driving a forklift when his left side suddenly went numb and the vehicle crashed into a wall. An ambulance was quickly called.
At MacNeal Hospital in Berwyn, the MRI scan showed a tennis-ball-size tumor deep in his brain. The surgery removed about half; getting rid of the rest was too dangerous.
"You may not make it to your birthday" in September, King remembers a doctor telling him.
"I haven`t been right since," said King, a former gang member who has an extensive criminal record. "I`ve been past depressed."
A month after his emergency admission, King walked out of rehabilitation carrying a prescription for chemotherapy pills that cost $9,000 a month—a charge his union-based insurance wouldn`t cover and he couldn`t pay when the pharmacist told him it was his responsibility.
"I never had a problem like this. I didn`t know what to do," he said.
Looking for help, King walked into the emergency room at Stroger Hospital in early April, where doctors took another set of scans and staff signed him up for free therapy and medications, which he continues to take. "I had to try to save myself," he said.
"Every day, I wake up and feel like I`m going to fight this cancer," said King, who dresses to impress and walks with a swagger, concealing the headaches that are sometimes so intense he can barely stand.
"I ain`t working for a brand new pair of [Air] Jordans; I don`t think about that material stuff," he said. "I`m working to live. That`s my job."
Realistically, doctors say, there is no chance of recovery.
Glioblastoma is especially difficult to treat because glial cells infiltrate the brain, casting a wide net like a spider web, said Dr. Nathaniel Holloway, a radiation oncologist at Stroger.
Even when surgeons cut the malignancy away, cancer cells remain at the periphery, almost impossible to distinguish from normal brain tissue. Inevitably, they proliferate, and the cancer recurs.
"Because of the nature of this disease, patients just don`t do well," Holloway said, noting the goal of therapy is to "prolong the period when patients are symptom-free."
King`s tumor already has grown back once, expanding rapidly over the course of two months and requiring another bout of brain surgery in mid-May. Soon after the surgery, his union-based coverage ended and King became uninsured.
It was while recovering from this operation in the hospital that he first heard news of Kennedy`s seizure.
"I said, `I bet he got what I got,` " King remembered thinking, "and he better be careful, man, because it`s not easy.
"Then I was trying to find out as much as I can, to see what kind of treatment they`re giving him, because I definitely want it too. . . . But in my mind, I was asking: `Can he handle it?` Because he`s older, and if he`s got the headaches I have, it could kill him."
Once, King wouldn`t have admitted being in pain. Now he talks about how loud noises feel like an assault and how he couldn`t get down the stairs at an "L" station recently because he was too exhausted from radiation therapy.
On a recent morning, he squinted at his left hand and opened and closed his fist repeatedly.
"I got to talk to my hand to move it," he said. "I tell it, `Hold tight.`
"There`s a lot of words I want to say, but they won`t come out because my mouth ain`t right and it feels like I`m drooling all over," he said, referring to the numbness on the left side of his face.
Coming to this point wasn`t easy.
Back at Stroger Hospital for daily radiation therapy in June, King was irritated by having to wait—often for hours—for medical attention and infuriated by what he interpreted as the staff`s lack of respect.
"He was very agitated, very angry, to the point where I was a little concerned for my safety," said Lillian Coleman, an American Cancer Society employee stationed at Stroger who helps cancer patients connect with resources.
A turning point came when she asked a hospital social worker to meet with King, who finally opened up, talking of everything he`d lost because of the cancer.
"He didn`t know what to do, who to talk to, how to ask for help, what to ask for," Coleman said.
With the social worker`s help, she arranged for King to have a neuropsychiatric consultation, get physical and occupational therapy, and apply for Medicaid and disability benefits.
Today, Stroger Hospital has become a refuge of sorts for King—the only place where people seem to understand what he`s going through.
Out on the street, he said, people "don`t want to get into it. They treat you like nothing`s going on."
He`s changed, too, in ways he never expected, after spending time in the hospital observing other patients and realizing he was no different from them, in the end.
"I ain`t as selfish as I was, wanting everything for me, right away," King said. "I`ve seen so much suffering here, and I know what they`re going through—the pain, the sadness, the depression.
"When I started, I wanted to get this tumor cut out of my head. Now, I want all these people to get some help."
Sunday, July 13, 2008 9:32 am CST
My stats page tells me almost 7,000 different people have visited this site in the past 12 days. I find that almost impossible to believe – having no clue what would have caused the spike in visitors…
I’ve asked the “powers-that-be” if the counting tool is broken – and even though they have said “no” --- I’m still not sure I believe the numbers.
As I’ve said before…I have a real love/hate relationship with the site…because I often feel like I am writing into the black hole. Rarely, rarely, rarely do I hear from anyone letting me know that they visit the site… and you can tell that the posts in the Guestbook have all but dried up….
HOWEVER… when I do hear from someone…. it makes it all worthwhile. And recently, I’ve heard from several someones….
My friend Sheri…who I met in California…at David and T.C.’s Soul Circle… Sheri knew us when we were living in Walnut Creek...so she knew Rory, Sean and I as a family. She knew us when the content had turned to happiness and was bordering on joy.
Sheri is on the right being blessed by Leslie. Beryl and Kimberley are looking on. Sheri had blossomed big time…and was leaving the area to travel to Sedona. We were having a “sending off” ritual for her.
Sheri is an artist.
She said I could share this painting with you. I love it. To me, it’s another version of
“Resting in the Palm of God’s Hand."
Sweet. Innocent. Joy-full.
Hope and peace to you,
Tom
Thursday, July 10, 2008 6:18 am CST
I can’t honestly say that I know that much about Albert Einstein. I do think it’s interesting (coincidence?) that he died on April 18,1955.
My son Sean’s birthday is April 18th and Trici was born in 1955.
Rory loved Einstein. Loved him. For as long as I can remember.
When he was about 5 or 6 … loooong before there was any hint that his mom might not live to a ripe, old age…Rory said to both of us, one night, “Whichever one of you dies first… when you get to heaven and see Einstein…tell him to come visit me in my dreams. There are some things I want to ask him.”
Sean and I were in Washington, D.C. for the 4th of July. Among the many things we saw was a gorgeous statue of Einstein on the Mall. It depicts him as a grandfatherly figure with a large, open, welcoming lap. It’s the kind of lap you want to crawl up into and simply rest.
To be held.
I couldn’t help but think of Rory crawling up onto that lap and chatting away. With his idol. His mentor. Einstein.
I did some googling and here are some Einstein quotes:
“A human being is part of a whole, called by us the Universe, a part limited in time and space. He experiences himself, his thoughts and feelings, as something separated from the rest a kind of optical delusion of his consciousness. This delusion is a kind of prison for us, restricting us to our personal desires and to affection for a few persons nearest us. Our task must be to free ourselves from this prison by widening our circles of compassion to embrace all living creatures and the whole of nature in its beauty.”
“Insanity: doing the same thing over and over again and expecting different results.”
"In the middle of difficulty lies opportunity.”
“There are two ways to live: you can live as if nothing is a miracle; you can live as if everything is a miracle.”
“The intuitive mind is a sacred gift and the rational mind is a faithful servant. We have created a society that honors the servant and has forgotten the gift.”
Hope and peace,
Tom
Wednesday, July 3, 2008 6:07 am CST
"Give me your tired, your poor, your huddled masses yearning to breathe free. The wretched refuse of your teeming shore. Send these, the homeless, tempest-tossed, to me: I lift my lamp beside the golden door."
Hope and peace and freedom for all,
Tom
Tuesday, July 1, 2008 10:42 pm CST
I first heard about Global View in Spring Green, Wisconsin from Richard and my friends from West Middle School. Several years ago, my parents traveled there with a group of their friends and brought me back a Singing Bowl made in Nepal.
I always wanted to visit.
That opportunity presented itself two weeks ago when Richard asked me if I would be interested in helping unpack the shipment of goods from Indonesia.
Yes, yes, yes.
Among the many fascinating pieces we unpacked were a number of rather large hand carved statues. I took one look at the tall, slender, standing Buddha and was mesmerized.
Hand carved on the island of Java. From lava rock…spit out of the island’s active volcano. As the lava flows into the rivers and streams it hardens. The natives cut huge chunks of the stone and unleash the “statues within.”
By the end of the day, I made my purchase.
The Buddha was too large to take home that day. We would have to return with a bigger vehicle and more people to help us lift it.
That day was this past Sunday, June 29th. The day I brought the Buddha home.
Why?
There’s something sacred about it. Looking at it snaps me into the present moment. Where healing occurs. I placed it right outside my kitchen window in the side garden. It catches my eye often during the day.
Snap.
Out of the past. Out of the future.
Into the present. Where healing occurs.
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I had the opportunity to meet the Dalai Lama last May. I wrote about that day in this Journal on May 21, 2007. If you’re interested you can scroll down and find it. I wrote about my nephew Andrew visiting Rory that first time he was in the hospital and bringing him Tibetan prayer beads. Rory loved them. They reminded me of rosary beads. Shortly after my visit with the Dalai Lama I found the Tibetan prayer beads in Rory’s room. I cut the length – shortening them so I could wear them around my neck. I was never quite certain if someone from Tibet…or someone who really understood the beads… would be offended that I had cut them and was wearing them around my neck…thinking it might be like cutting a rosary and shortening it to fit your own needs (wants). I wore them anyway.
The beads reminded me my of encounter with the Dalai Lama. The reminded me of the sacredness of the meeting. Of the energy. Of the excitement. Of the life. The beads brought me out of the past – out of the future - into the present moment. Where healing occurs.
__________________________________
I brought the Buddha home on Sunday the 29th.
And on Monday, the 30th…the Tibetan prayer beads I wore round my neck for over a year broke beyond repair. During yoga class.
Interesting.
Coincidence?
Hope and peace and inquiry,
Tom
Remember to question everything!
Monday, June 30, 2008 9:35 am CST
“... consciously participate
in our own transformation”
Nice phrase.
It “came to me” the day I was meeting with David and Valerie to talk about launching this website. I knew Valerie would ask…”What’s your intention for the site?” I sat down. Asked. Listened. Jotted down the intention on a piece of paper. Never changed a word of it.
Intuition?
Because I’m human I drift in and out of being conscious. I’m either in the past. Or I’m in the future. Not exactly sure how many minutes a day I am actually present. Really present. “In the moment” as they are fond of saying.
Many of them say “The point of power is the present moment.” Or some version of that. I’m interested in tapping into the point of power. To transform. To heal.
I need reminders.
Because I forget.
Often.
To “be” conscious.
This year, when you visit Anderson Japanese Gardens in town…they give you a sticker to wear as you tour the magnificent place. It’s a round circle with four Japanese symbols on it. I believe it’s called a Kosen Mizubachi. (There is a small water basin with the Kosen Mizubachi design carved into it tucked away in one of the Garden’s corners. It was one of Rory’s favorite spots.) It’s the symbol for the gardens and means, “In this moment I am content.” It’s hard for me to take the little sticker off my shirt at the end of my tour. Sometimes, I don’t. I leave it on till it drops off – or gets lost in the wash.
What would it be like if we ALL wore stickers (or T-shirts) that had those words printed --- “In this moment I am content!” Every time we looked in the mirror we’d see our “mantra.” AND every time we looked at another person – or a person looked at us – the thought (belief) that “in this moment I am content” would be reinforced.
The wearing of the Kosen Mizubachi sticker/T-shirt could zap us all into the present moment before we knew what happened to us…into the point of power…where healing occurs.
After Erin died…and more so often Trici died…and certainly after Rory died…I’d light a candle…or 6 or 7 candles - soon after I got up each day. There’d be one big candle in the center of the dining room table…and one in the kitchen…and the living room. The candles reminded me of going to church as a boy with my grandma.
“Here’s some money, Tommy. Go up and light a candle. Kneel down and say a prayer. Go on. Do it.”
Yes, grandma.
Looking at a candle zaps me into the present moment. Where healing can occur.
Fresh flowers do the same thing for me.
Zap.
I notice. For a moment I leave the past and/or the future and am present.
I’m facilitating a workshop that begins next Tuesday, July 8th where we’ll play with zapping ourselves into the present moment.
Making Peace
With Your Life
Tuesdays - July 8, 15 and 22
It’s a 3-part series open to both men and women. 9:30 am to noon at Womanspace, 3333 Maria Linden Rd in Rockford. Cost is $80.00
Register by calling 815.877.0118.
This is how I describe the workshop series:
In his book The Power of Now, Eckhart Tolle says that when I resist what is - I make the present moment my enemy. He goes on to say that only the present moment can free me of the past. If you are living your life in pain, due to death, a divorce, the end of a relationship, a job loss or any other life-changing event join a sacred circle of kindred spirits as we practice living in the present moment. Our shared intention will be to clear a space that we might hear the voice of God that he/she/it might help us remember that our birthright is peace and joy. Decide to exhale and make peace with your life.
At Womanspace, we will take advantage of their beautiful gardens and labyrinth. I will also share and encourage participants to experiment with techniques that help one stay “in the present moment.” It promises to be a transformational three weeks.
Hope and peace,
Tom
Wednesday, June 25, 2008 7:28 am CST
“Great spirits have always encountered violent opposition from mediocre minds.”
Albert Einstein
Have you noticed no news about Ted Kennedy’s actual diagnosis? At least none that I’ve seen or heard. Last picture we have is of the Senator sailing … shortly after “successful” brain cancer surgery. All “seems” to be well. A little chemo and radiation and it’s back to normal.
Those of us that have heard the words glioblastoma multiforme roll off a doctor’s lips following a brain biopsy know that nothing could be further from the truth.
As I’ve said before…I respect the Senator’s right to privacy…however…until we lay the truth about a diagnosis of GBM in the middle of the table…and stare at it for a good long time…nothing will change…as has been the case for some 30 years.
Not too long ago a friend asked me about the “clinic in Houston” that I took Rory to not too long after I heard the words glioblastoma multiforme.
The controversial, alternative, very expensive Burzynski Clinic in Houston.
The clinic where they offered us hope.
False hope?
I’m not sure.
It was Rory who said, “Dad, I want to try this.” He made the decision and I supported him. A pattern we had created long before.
“It’s certainly worth a phone call,” I said to my friend. “And perhaps even a visit. You’ll know if it’s the right thing to do. Choosing the right treatment is such a personal decision.”
Yesterday – as I was cleaning the kitchen sink – I saw a small piece of yellowed newspaper torn from its full page lying on the counter. One of many, many “things-to-be-saved” I have ripped from the paper over the years, no doubt.
“Great spirits have always encountered violent opposition from mediocre minds.”
Albert Einstein
It’s the quote I saw framed and hanging on the wall inside the Burzynski Clinic…printed on the newspaper square I had ripped from it’s full page some years ago.
Reading it the first time – that winter day in Houston - gave me permission to exhale for a moment.
Reading it again in the comfort of my own kitchen allowed me to exhale again.
As I said – we are not alone.
Hope and peace,
Tom
Friday, June 20, 2008 9:00 am CST
The number of folks visiting this site has increased significantly over the past few weeks…and the number of folks returning several times a day has increased as well.
Feels to me like people are looking for connection.
Also feels like we are living at a very significant time in humanity’s history. I can almost feel us all teetering on the edge of it all. Which direction are we going to move in?
Individually and collectively.
As I’ve said before – the death of someone we love cracks us wide open.
Unlimited possibilities are revealed.
In the midst of overwhelming darkness and despair.
If/when we choose to be with it all.
Tim Russert.
After the Memorial Service for Tim … after the “Izzy” version of Somewhere Over the Rainbow was played (same song I included in Rory’s Memorial Service) …as the people were leaving the Kennedy Center … they were greeted by a most magnificent double rainbow overhead.
Google “Tim Russert’s Rainbow” to see photo.
How to explain?
Uncanny coincidence?
Or are you cracked open enough to finally get it?
We are not alone.
Sean and I had tickets to the White Sox the night before Father’s Day. It was a 6:05 pm game. I thought it might be fun to stay in a hotel downtown … instead of driving home late Saturday night.
A friend suggested Priceline.& | 
