Amy Susan Crohn's Blog, page 3
September 5, 2014
SUICIDE PREVENTION & EDUCATION WORKSHOPS
Hi, all. Please join me locally or visit SISFI for a full schedule of radio shows, workshops and other events taking place September 17th to October 3rd. Suicide affects each and every one of us whether someone close to us completes suicide or we know others who have been impacted or even mentioned it aloud. This is especially timely due to the loss of comedian Robin Williams and, more personally for me, my brother, Steve Crohn. Thank you to Ossining Public Library and Ossining Communities That Care for making this happen in my hometown.
August 26, 2014
Dying to Live
Today is my birthday. I am 54 years old. Eighteen years ago I was pronounced dead on arrival at one of our local hospitals, suffering from a misdiagnosed cancerous tumor wedged between my heart and lung. I had Stage IV lymphoma. No one thought I'd live past that night let alone nearly another 20 years.
And live I have - sometimes with wild abandon and other times quietly and at peace. As stranger and stranger health issues crop up (due to the aggressive chemotherapy I received) and I remain a medical oddity, I triage myself and move on. Since I wasn't expected to live, no physician can predict the toll the cure took and how long it will rob me of certain abilities. Am I scared? Heck yeah.
This is why I try to choose to live each day as if it was my last while I dance like nobody's watching. That's doesn't mean I'm always Happy like Pharell Williams sings; nor does it mean I escape tragedy. Those of you who follow my blog know that I am brutally honest about the issues I face. No one is more surprised than me that I am able to face these challenges time and time again, especially the suicide of my brother, Steve Crohn.
I don't really want to celebrate this year. My brother's death occurred on August 24, 2013, just two days before my birthday. He sent me a card that arrived a few days later. It reads: "On your birthday, remember that every day is a gift. So pretend tomorrow is from me." At first, I thought it was a joke. Slowly but surely, I've come to accept that he was giving me permission to live many tomorrows even though he wouldn't be here.
At 54, I'm going to do something I vowed I would never do. I'm going to get a tattoo on my ankle of my brother's paint palette and paintbrush. The tattoo artist is working on a sketch now using his actual palette as a guide.
As I work to revise my book DYING TO LIVE: Running backwards through cancer, Lupus, and chronic illness, I am mindful of the many changes that have occurred in my life since I first wrote it. The title will change, the 'innards' will change, its scientific references will be updated and I will have to stop myself from writing a brand new book.
That's okay. I'm here; even if I had to die a hundred deaths in the past 18 years to stay.
And live I have - sometimes with wild abandon and other times quietly and at peace. As stranger and stranger health issues crop up (due to the aggressive chemotherapy I received) and I remain a medical oddity, I triage myself and move on. Since I wasn't expected to live, no physician can predict the toll the cure took and how long it will rob me of certain abilities. Am I scared? Heck yeah.
This is why I try to choose to live each day as if it was my last while I dance like nobody's watching. That's doesn't mean I'm always Happy like Pharell Williams sings; nor does it mean I escape tragedy. Those of you who follow my blog know that I am brutally honest about the issues I face. No one is more surprised than me that I am able to face these challenges time and time again, especially the suicide of my brother, Steve Crohn.
I don't really want to celebrate this year. My brother's death occurred on August 24, 2013, just two days before my birthday. He sent me a card that arrived a few days later. It reads: "On your birthday, remember that every day is a gift. So pretend tomorrow is from me." At first, I thought it was a joke. Slowly but surely, I've come to accept that he was giving me permission to live many tomorrows even though he wouldn't be here.
At 54, I'm going to do something I vowed I would never do. I'm going to get a tattoo on my ankle of my brother's paint palette and paintbrush. The tattoo artist is working on a sketch now using his actual palette as a guide.
As I work to revise my book DYING TO LIVE: Running backwards through cancer, Lupus, and chronic illness, I am mindful of the many changes that have occurred in my life since I first wrote it. The title will change, the 'innards' will change, its scientific references will be updated and I will have to stop myself from writing a brand new book.
That's okay. I'm here; even if I had to die a hundred deaths in the past 18 years to stay.
August 13, 2014
Oh very young what will leave us this time...
...you're only dancing on this earth for a short while. ~ Cat Stevens
It's nearly a year since my brother, Steve Crohn, completed suicide. I know now this is the correct term when someone attempts and accomplishes their own death. And the news of Robin Williams' suicide has brought to the fore many of the feelings I had in August 2013. Why? Where? When?
Why? Why? Why?
The experts and the talking heads and the never-ending news feeds tell us the easy answer is unmitigated depression/mental illness accompanied by substance abuse. Both were factors in my brother's and Williams' deaths. But is that all there is?
Since each one of us is unlike another (as Sesame Street taught us),we uniquely adapt to the challenges of our own lives. As I sit here and listen to a Cat Stevens collection of songs I'm reminded of when I was a teenager in the 1970's and listened intently to each of the composer and singer's words as if they held all the truths I would ever need to know. I may have been a little Hippie high at times but, often enough, I still allow myself to think this is true. And I listen again and again and again.
Oh baby. baby it's a wild world. It's hard to get by just upon a smile.
Circumstances change, people change religions and names, we morph and mold ourselves into our own Morks and Mindys - creatures from our own minds and worlds. Sensitive souls build armor for protection. Confident personalities mask pain in a myriad of ways. The truth of it is, however, that we all experience suffering. It's what we do with it that makes all the difference.
I am in a lot of emotional pain today; grieving fully and wholly for my brother and making comparisons between him and Robin Williams. I don't know how I will feel on the 'angelversary' of my brother's death on August 24th, or on my 54th birthday two days later on August 26th, or on what would have been my brother's 67th birthday on September 5th. I'm just letting the feelings come.
Please allow yourself to do the same no matter what your troubles are today.
Oh very young, what will you leave us this timeYou're only dancin' on this earth for a short whileAnd though your dreams may toss and turn you nowThey will vanish away like your dads best jeansDenim blue, faded up to the skyAnd though you want them to last foreverYou know they never will(you know they never will)And the patches make the goodbye harder still.
Oh very young what will you leave us this timeThere'll never be a better chance to change your mindAnd if you want this world to see a better dayWill you carry the words of love with youWill you ride the great white bird into heavenAnd though you want to last foreverYou know you never will(you know you never will)And the goodbye makes the journey harder still.
Will you carry the words of love with youWill you ride, oh, oooh
Oh very young, what will you leave us this timeYou're only dancin' on this earth for a short whileOh very young, what will you leave us this time
It's nearly a year since my brother, Steve Crohn, completed suicide. I know now this is the correct term when someone attempts and accomplishes their own death. And the news of Robin Williams' suicide has brought to the fore many of the feelings I had in August 2013. Why? Where? When?
Why? Why? Why?
The experts and the talking heads and the never-ending news feeds tell us the easy answer is unmitigated depression/mental illness accompanied by substance abuse. Both were factors in my brother's and Williams' deaths. But is that all there is?
Since each one of us is unlike another (as Sesame Street taught us),we uniquely adapt to the challenges of our own lives. As I sit here and listen to a Cat Stevens collection of songs I'm reminded of when I was a teenager in the 1970's and listened intently to each of the composer and singer's words as if they held all the truths I would ever need to know. I may have been a little Hippie high at times but, often enough, I still allow myself to think this is true. And I listen again and again and again.
Oh baby. baby it's a wild world. It's hard to get by just upon a smile.
Circumstances change, people change religions and names, we morph and mold ourselves into our own Morks and Mindys - creatures from our own minds and worlds. Sensitive souls build armor for protection. Confident personalities mask pain in a myriad of ways. The truth of it is, however, that we all experience suffering. It's what we do with it that makes all the difference.
I am in a lot of emotional pain today; grieving fully and wholly for my brother and making comparisons between him and Robin Williams. I don't know how I will feel on the 'angelversary' of my brother's death on August 24th, or on my 54th birthday two days later on August 26th, or on what would have been my brother's 67th birthday on September 5th. I'm just letting the feelings come.
Please allow yourself to do the same no matter what your troubles are today.
Oh very young, what will you leave us this timeYou're only dancin' on this earth for a short whileAnd though your dreams may toss and turn you nowThey will vanish away like your dads best jeansDenim blue, faded up to the skyAnd though you want them to last foreverYou know they never will(you know they never will)And the patches make the goodbye harder still.
Oh very young what will you leave us this timeThere'll never be a better chance to change your mindAnd if you want this world to see a better dayWill you carry the words of love with youWill you ride the great white bird into heavenAnd though you want to last foreverYou know you never will(you know you never will)And the goodbye makes the journey harder still.
Will you carry the words of love with youWill you ride, oh, oooh
Oh very young, what will you leave us this timeYou're only dancin' on this earth for a short whileOh very young, what will you leave us this time
August 11, 2014
Writing Process Blog Hop: "Tag! I'm it."
Thanks to writer and colleague Jillian Maas Backman author of Beyond the Pews, a fascinating tale of how Jillian grew up as a pastor's daughter yet found she was connected to other spiritual experiences outside her bricks and mortar church, I've been tagged to participate in the worldwide Writing Process Blog Hop. Each participating writer agrees to answer a few simple questions everyone wants to know; that is, how does a writer do what he or she does?
What am I working on?
Oy! Everything! I'm revising and updating my book DYING TO LIVE: Running backwards through cancer, Lupus, and chronic illness that was first published in June 2013. I'm also working as a ghostwriter on two book projects and have a new client that is interested in various marketing communications materials. I try to keep up with my blog that helps educate and heighten awareness of the Adverse Childhood Experiences (ACE) Study (www.acestudy.org) that scientifically proves if you are neglected and/or abused as a child you are highly likely to get sick as an adult. This past year, I've included writings on suicide prevention and how survivors fare since my dear brother completed suicide last August. Admittedly, I've taken a bit of a break this summer.
How does my work differ from others of its genre?
Raw honesty. I am not afraid to talk about anything that has happened to me personally while respecting the privacy of those around me. Those who have read my book and my blog posts appreciate the opportunity to identify with things that people don't usual talk about. I bare my soul. With client work, I always find the 'hook,' or the one thing that is usually buried within all the information they provide and that's the 'aha' moment that drives my marketing pieces.
Why do I write what I do?
Mostly to heal and to retain my sanity. I also enjoy entertaining myself and my readers. I always inject humor into everything I write and one of my favorite credos is always find the funny. I have learned that even in the most dire of situations or circumstances, there is joy somewhere, somehow, some way - we just have to look for it.
Up next on August 18th is Donna R. Gore a.k.a. "Lady Justice," host of Shattered Lives radio program and premier blogger. Donna's first book will be published soon.
What am I working on?
Oy! Everything! I'm revising and updating my book DYING TO LIVE: Running backwards through cancer, Lupus, and chronic illness that was first published in June 2013. I'm also working as a ghostwriter on two book projects and have a new client that is interested in various marketing communications materials. I try to keep up with my blog that helps educate and heighten awareness of the Adverse Childhood Experiences (ACE) Study (www.acestudy.org) that scientifically proves if you are neglected and/or abused as a child you are highly likely to get sick as an adult. This past year, I've included writings on suicide prevention and how survivors fare since my dear brother completed suicide last August. Admittedly, I've taken a bit of a break this summer.
How does my work differ from others of its genre?
Raw honesty. I am not afraid to talk about anything that has happened to me personally while respecting the privacy of those around me. Those who have read my book and my blog posts appreciate the opportunity to identify with things that people don't usual talk about. I bare my soul. With client work, I always find the 'hook,' or the one thing that is usually buried within all the information they provide and that's the 'aha' moment that drives my marketing pieces.
Why do I write what I do?
Mostly to heal and to retain my sanity. I also enjoy entertaining myself and my readers. I always inject humor into everything I write and one of my favorite credos is always find the funny. I have learned that even in the most dire of situations or circumstances, there is joy somewhere, somehow, some way - we just have to look for it.
.jpg)
Up next on August 18th is Donna R. Gore a.k.a. "Lady Justice," host of Shattered Lives radio program and premier blogger. Donna's first book will be published soon.
June 13, 2014
The Man Who Was Immune to AIDS...
The New York Magazine feature article about my brother, Steve Crohn. (June 9th issue).
The Man Who Was Immune to Aids, but not what came after...
The Man Who Was Immune to Aids, but not what came after...
June 10, 2014
It's Not For Me to Say...
Borrowing the title of a Johnny Mathis love song, I know it's not only up to me to make a final decision on anything in my life - my career, my loves, my challenges, and my tragedies.
All the motivational books or sayings you will read say it is entirely up to you and you alone to forge your path. The rocks thrown down in your way are for you to navigate around or through and reach the other side again and again and again. Oh, phooey.
To me, reality is being patient and allowing the events and decisions that are made around you reveal opportunity for you. Such it is with my book, my health, my husband, my children, my living arrangements and my friends.
For example: The fate of my book is in the hands of several royalty publishers who await my revised manuscript. I will not make the 'yea' or 'nay' decision; they will. But it is me who will decide how to manage the results - puff, puff forward as I select a publisher or take the blow of a 'no' and choose to use a different bat, swing another way, but never give up. It's not for me to say.
Living moment to moment means allowing yourself to just be. The miracle could be just around the corner! Have you heard or read that one? I have and it keeps me going although it did not prevent my brother from committing suicide last August. It's not for me to say.
Yesterday, I traipsed around New York City again and today I feel like gloopy leftover oatmeal. There's my health problems waving 'hello.' Today, although it's only Tuesday, is a day of rest. It's not for me to say.
My husband and I will be married 30 years this September. I want a ceremony in our Church to renew our vows. He doesn't like doing anything in public. It's not for me to say yet I know a compromise will come to us.
My sons are both in their twenties and know everything, of course, so I have little or no input into their daily doings. I rejoice when we are all together and enjoy each other's company. When? It's not for me to say.
We live in New York but have a lovely condo in South Carolina. When will we get there permanently? What decisions are left to be made? Time will tell. It's not for me to say.
Just like when I was sick with cancer, I have lost some friends who, I must conclude, couldn't deal with my overwhelming grief these past nine months. Those friends have their reasons and I know new friends will reveal themselves. It happened before and it's not for me to say.
Reading the lengthy feature article in this week's issue of New York Magazine about my brother's ordinary yet extraordinary life, I can only conclude that we all make our way with adversity and triumph. We all struggle and compete and rise to many occasion. Oftentimes, we stumble and get right back up. At other times, like my brother, we choose not to get up again when we feel our work on Earth is done. (NOTE: The article, entitled The Man Who Was Immune to AIDS, but not what came after is not 'clickable' for those who do not subscribe. Later in the week, it will be available for all.)
As the final paragraph of the article says:
"Over time, (Steve's) sisters have provisionally come to see evidence for (a) less tragic view not only in his birthday message to Amy ('enjoy gift') but in the way he was found in the car by the police. With the seat reclined as far as it could go and a CD of Buddhist chants nearby, he'd propped his feet up on the dashboard. He was smiling."
It's not for me to say. I loved him anyway.
All the motivational books or sayings you will read say it is entirely up to you and you alone to forge your path. The rocks thrown down in your way are for you to navigate around or through and reach the other side again and again and again. Oh, phooey.
To me, reality is being patient and allowing the events and decisions that are made around you reveal opportunity for you. Such it is with my book, my health, my husband, my children, my living arrangements and my friends.
For example: The fate of my book is in the hands of several royalty publishers who await my revised manuscript. I will not make the 'yea' or 'nay' decision; they will. But it is me who will decide how to manage the results - puff, puff forward as I select a publisher or take the blow of a 'no' and choose to use a different bat, swing another way, but never give up. It's not for me to say.
Living moment to moment means allowing yourself to just be. The miracle could be just around the corner! Have you heard or read that one? I have and it keeps me going although it did not prevent my brother from committing suicide last August. It's not for me to say.
Yesterday, I traipsed around New York City again and today I feel like gloopy leftover oatmeal. There's my health problems waving 'hello.' Today, although it's only Tuesday, is a day of rest. It's not for me to say.
My husband and I will be married 30 years this September. I want a ceremony in our Church to renew our vows. He doesn't like doing anything in public. It's not for me to say yet I know a compromise will come to us.
My sons are both in their twenties and know everything, of course, so I have little or no input into their daily doings. I rejoice when we are all together and enjoy each other's company. When? It's not for me to say.
We live in New York but have a lovely condo in South Carolina. When will we get there permanently? What decisions are left to be made? Time will tell. It's not for me to say.
Just like when I was sick with cancer, I have lost some friends who, I must conclude, couldn't deal with my overwhelming grief these past nine months. Those friends have their reasons and I know new friends will reveal themselves. It happened before and it's not for me to say.
Reading the lengthy feature article in this week's issue of New York Magazine about my brother's ordinary yet extraordinary life, I can only conclude that we all make our way with adversity and triumph. We all struggle and compete and rise to many occasion. Oftentimes, we stumble and get right back up. At other times, like my brother, we choose not to get up again when we feel our work on Earth is done. (NOTE: The article, entitled The Man Who Was Immune to AIDS, but not what came after is not 'clickable' for those who do not subscribe. Later in the week, it will be available for all.)
As the final paragraph of the article says:
"Over time, (Steve's) sisters have provisionally come to see evidence for (a) less tragic view not only in his birthday message to Amy ('enjoy gift') but in the way he was found in the car by the police. With the seat reclined as far as it could go and a CD of Buddhist chants nearby, he'd propped his feet up on the dashboard. He was smiling."
It's not for me to say. I loved him anyway.
June 2, 2014
Glory Days
Glory is fleeting because there is always hard work left to be done. While my book won an impressive award as a Next Generation Indie Book Awards Finalist and I was feted and celebrated over several days last week at Book Expo America including a gala reception at The Harvard Club and a one-hour autographing session in the Headline Books booth, I am still reeling from all the events and experiences.
And I'm pretty sure trekking around Manhattan and the Jacob Javits Center carrying loads of books and materials threw me into a Lupus flare. On the eighth hour of the second day, I knelt down to re-arrange my bag and literally could not rise up! I took a deep breath and prayed my knees would do it just one more time. They did and I knew it was time for me to leave. Taxi!
The brightest spot came when one potential publisher read my book overnight and invited me back to her booth the following day. She gave me constructive criticism and I agreed with everything she had to say. So I will be revising and re-writing for awhile to finish this journey I began almost five years ago. I believe I will have a real publisher when I finish the work and I am highly impressed with her brand.
Other 'publishers' wanted me to pay for upfront costs such as reformatting, printing and marketing. There is no such thing as an advance anymore unless you are a well-known figure of some celebrity or established author. I politely declined their 'offers.'
It's a slippery road from writing a story that many have said is important and worthwhile for a large population of readers and I will persevere. As my prospective publisher said, I'm "this close" to a fine, finished product. She held her fingers one inch apart.
There were many other highlights including enjoying lunch with a costumed pirate one day at a shared table and learning that his day job is as caretaker of a now-deceased famous author's home on a beach in New Jersey. I met with a lovely British publisher who was eminently professional and kind even though he regretfully told me my book would not fit into his line. And on day two, I was privileged to sit with a publisher of military books. We had a fascinating conversation; one which ended with him describing his passion to me - spending time in one of eight abandoned beach cottages somewhere in Cape Cod. He won the yearly lottery to enjoy his week in September with no electricity or creature comforts and he was thrilled and animated as he spoke of it. I was enthralled.
I reconnected with an old work colleague who has authored several best-selling books and one that was made into a movie. It was wonderful to see Lorenzo Carcaterra and congratulate him on his successes. I was also happy to meet and chat with Steven "Stevie D." Dupin, a Los Angeles-based comedian and writer whose book also debuted at this year's BEA. Since it's one about fighting cancer and winning the war, we traded books and stories and he is an extremely likable Kentucky-born husband and father.
I shared a one cab with a publisher's representative who gave me a lead. I walked miles to visit each exhibitor's booth that I had pre-selected from the more than 1000 exhibitors there. I was handed free books that just added to my already-cumbersome load. Although I feel that I found 'the one,' I will be following up with many more over the next couple of weeks.
It was an amazing experience and one I will treasure forever. I'm 'this close' and yet it still seems so far away. Thank you to all who have supported my journey running backwards through cancer, Lupus and chronic illness. And please remember to learn about The ACE Study and how we can educate physicians how to interrupt disease in adults who have been maltreated as children. It's my mission and I'm sticking to it.
And I'm pretty sure trekking around Manhattan and the Jacob Javits Center carrying loads of books and materials threw me into a Lupus flare. On the eighth hour of the second day, I knelt down to re-arrange my bag and literally could not rise up! I took a deep breath and prayed my knees would do it just one more time. They did and I knew it was time for me to leave. Taxi!
The brightest spot came when one potential publisher read my book overnight and invited me back to her booth the following day. She gave me constructive criticism and I agreed with everything she had to say. So I will be revising and re-writing for awhile to finish this journey I began almost five years ago. I believe I will have a real publisher when I finish the work and I am highly impressed with her brand.
Other 'publishers' wanted me to pay for upfront costs such as reformatting, printing and marketing. There is no such thing as an advance anymore unless you are a well-known figure of some celebrity or established author. I politely declined their 'offers.'
It's a slippery road from writing a story that many have said is important and worthwhile for a large population of readers and I will persevere. As my prospective publisher said, I'm "this close" to a fine, finished product. She held her fingers one inch apart.
There were many other highlights including enjoying lunch with a costumed pirate one day at a shared table and learning that his day job is as caretaker of a now-deceased famous author's home on a beach in New Jersey. I met with a lovely British publisher who was eminently professional and kind even though he regretfully told me my book would not fit into his line. And on day two, I was privileged to sit with a publisher of military books. We had a fascinating conversation; one which ended with him describing his passion to me - spending time in one of eight abandoned beach cottages somewhere in Cape Cod. He won the yearly lottery to enjoy his week in September with no electricity or creature comforts and he was thrilled and animated as he spoke of it. I was enthralled.
I reconnected with an old work colleague who has authored several best-selling books and one that was made into a movie. It was wonderful to see Lorenzo Carcaterra and congratulate him on his successes. I was also happy to meet and chat with Steven "Stevie D." Dupin, a Los Angeles-based comedian and writer whose book also debuted at this year's BEA. Since it's one about fighting cancer and winning the war, we traded books and stories and he is an extremely likable Kentucky-born husband and father.
I shared a one cab with a publisher's representative who gave me a lead. I walked miles to visit each exhibitor's booth that I had pre-selected from the more than 1000 exhibitors there. I was handed free books that just added to my already-cumbersome load. Although I feel that I found 'the one,' I will be following up with many more over the next couple of weeks.
It was an amazing experience and one I will treasure forever. I'm 'this close' and yet it still seems so far away. Thank you to all who have supported my journey running backwards through cancer, Lupus and chronic illness. And please remember to learn about The ACE Study and how we can educate physicians how to interrupt disease in adults who have been maltreated as children. It's my mission and I'm sticking to it.
.jpeg)
May 19, 2014
Awards and Plants
My book, DYING TO LIVE: Running backwards through cancer, Lupus and chronic illness won an award from Indies Unlimited, an organization that celebrates independent authors "whose body of work is not obligated to a single large publishing company." It was a wonderful surprise to open an email with the heading "Congratulations" and learning all the benefits of the award itself, including a reception and medal ceremony on May 28 at The Harvard Club in New York City, a one-hour book signing in a publisher's booth at Book Expo America May 29th to 31st and a 20-minute video chat produced by Shindig.com. Plus, over the four day period, I have the opportunity to meet and mingle with authors, agents, publishers and distributors and announcements of my award and work will be included in numerous publications and on several websites.
Funny thing is, I haven't made a dime from this book; nor did I or do I have any expectations that I ever will.
But it doesn't matter. Writing the book was a healing exercise for a chronically-ill person like me. It was my gift to the scads of others who are similarly struggling with acute disease, especially those who can tie it directly to maltreatment during childhood. The ACE Study proves that children who were neglected or abused are then biologically pre-disposed to getting sick as an adult.
A funny thing happened on the way to this forum - I've changed. Since publication of my book last June and the death of my brother last August, I've been re-traumatized and fumbling around trying to figure out who I am - again! My Statue, as described in my book, was my visualization for me, myself, and I and, most importantly, how I was doing that day or should take care of myself.
For example, if I woke up in the morning and visualized my Statue strong and tall, I went out confidently to face the world. If I woke up and saw a crack down the middle, an arm broken off, or it rocking back and forth on its foundation, I knew I needed to be kind to myself that day. Since my brother's death and just like when I was smacked down with Stage IVB cancer and Lupus, my Statue is not only dust, it is missing!
Where did it go? How could I get it back? Well, the answer finally revealed itself to me. I don't want it back. I am a living, breathing, growing organism who should not steel herself to the world as a block of stone. I should be open to healing and love and less guilt and worry. I am a newly planted bush, just rooting in the soft earth and sprouting baby leaves and tiny white flowers. It's my fourth 'new normal' in this life.
The lesson is that we can all remake ourselves, one tiny bud at a time. Change the self-image and you change the person. My life is no longer on hold. I have a lot of new things to explore.
Funny thing is, I haven't made a dime from this book; nor did I or do I have any expectations that I ever will.
But it doesn't matter. Writing the book was a healing exercise for a chronically-ill person like me. It was my gift to the scads of others who are similarly struggling with acute disease, especially those who can tie it directly to maltreatment during childhood. The ACE Study proves that children who were neglected or abused are then biologically pre-disposed to getting sick as an adult.
A funny thing happened on the way to this forum - I've changed. Since publication of my book last June and the death of my brother last August, I've been re-traumatized and fumbling around trying to figure out who I am - again! My Statue, as described in my book, was my visualization for me, myself, and I and, most importantly, how I was doing that day or should take care of myself.
For example, if I woke up in the morning and visualized my Statue strong and tall, I went out confidently to face the world. If I woke up and saw a crack down the middle, an arm broken off, or it rocking back and forth on its foundation, I knew I needed to be kind to myself that day. Since my brother's death and just like when I was smacked down with Stage IVB cancer and Lupus, my Statue is not only dust, it is missing!
Where did it go? How could I get it back? Well, the answer finally revealed itself to me. I don't want it back. I am a living, breathing, growing organism who should not steel herself to the world as a block of stone. I should be open to healing and love and less guilt and worry. I am a newly planted bush, just rooting in the soft earth and sprouting baby leaves and tiny white flowers. It's my fourth 'new normal' in this life.
The lesson is that we can all remake ourselves, one tiny bud at a time. Change the self-image and you change the person. My life is no longer on hold. I have a lot of new things to explore.
May 3, 2014
Soul and Spirit; Love and Dying
I just finished reading Theresa Caputo's book: There's More to Life Than This: Healing Messages, Remarkable Stories, and Insight About the Other Side from the Long Island Medium. What can I say?
The poofy-haired, loud-mouthed little medium from Long Island is onto something. But I knew that already because I experienced my own share of connections to 'the other side' during my near-fatal illness as described in my memoir DYING TO LIVE: Running backwards through cancer, Lupus, and chronic illness.
Like Theresa as a young girl, I didn't believe any of it when these things started to happen and I fought vehemently with those who tried to change my mind. Typically, I would say after one of my out-of-body experiences or visitations: "That didn't happen!" And more often than not, my earth-bound guides, including my pastor, would say: "Why not?"
Why not, indeed? But I am not a medium. I have had spiritual experiences that make sense when people like Theresa Caputo explain them.
As of last Friday, I've now lost three of those people who helped put perspective on these things to me and they were all fathers - my own father in 2002, my surrogate father (my brother who was 14 years older than me) last August, and my very first pastor who welcomed me to a church in 1989 when religion was absolutely foreign to me. I was raised with no clear-cut religion so I knew nothing about it, but I did seek to learn when I was pregnant with my first child. The Reverend George B. Higgins was big, boisterous and loud - kind of like an older, male version of Theresa Caputo - and there was no doubt he was connected to Him directly because George said so and he meant it!
My first educational lesson with George started with me being direct, as usual. "Just who are the Father, Son and Holy Ghost anyway," I asked him. He laughed and then became quite serious while he explained that they are all one, really, and that a person's energy is spirit and soul and love. I had many more lessons with George and, while I can't say I rose to the level of 'Church Lady' in my beliefs or actions, I certainly gained a healthy respect for that which can not be explained logically; that which just is. The lessons I learned from my long-gone father and newly-lost brother were similarly profound.
I had my own triumvirate of sorts in the past seven days: A DYING TO LIVE book signing event, a memorial dedication of the Stephen L. Crohn Art Gallery, and George's funeral (held April 28th, my father's birthday).
The book event was a proud moment but also very emotional as the group of 10 or so attendees and I discussed spirituality and dying and doctor's visits and individual experience related to critical or chronic illness. The Art Gallery dedication was highly gratifying and deeply disturbing as I knew this was a monument to my brother who was not physically coming back - ever. Finally, the funeral of the very first pastor I ever really knew was heartbreaking. Although he lived a long life, the sadness in the filled-to-capacity sanctuary was palpable as we all knew he was a one-and-only; there would never be another like him.
I am spent.
I recently read one of those inspirational quotes posted on Facebook that usually annoy me when I'm feeling really down. But this one, by Brazilian author Paulo Coelho, caught my eye.
“Never give up. When your heart becomes tired, just walk with your legs - but move on.”
I'm trying Daddy, Steve and George and when I feel your energy around me, it helps a lot.
The poofy-haired, loud-mouthed little medium from Long Island is onto something. But I knew that already because I experienced my own share of connections to 'the other side' during my near-fatal illness as described in my memoir DYING TO LIVE: Running backwards through cancer, Lupus, and chronic illness.
Like Theresa as a young girl, I didn't believe any of it when these things started to happen and I fought vehemently with those who tried to change my mind. Typically, I would say after one of my out-of-body experiences or visitations: "That didn't happen!" And more often than not, my earth-bound guides, including my pastor, would say: "Why not?"
Why not, indeed? But I am not a medium. I have had spiritual experiences that make sense when people like Theresa Caputo explain them.
As of last Friday, I've now lost three of those people who helped put perspective on these things to me and they were all fathers - my own father in 2002, my surrogate father (my brother who was 14 years older than me) last August, and my very first pastor who welcomed me to a church in 1989 when religion was absolutely foreign to me. I was raised with no clear-cut religion so I knew nothing about it, but I did seek to learn when I was pregnant with my first child. The Reverend George B. Higgins was big, boisterous and loud - kind of like an older, male version of Theresa Caputo - and there was no doubt he was connected to Him directly because George said so and he meant it!
My first educational lesson with George started with me being direct, as usual. "Just who are the Father, Son and Holy Ghost anyway," I asked him. He laughed and then became quite serious while he explained that they are all one, really, and that a person's energy is spirit and soul and love. I had many more lessons with George and, while I can't say I rose to the level of 'Church Lady' in my beliefs or actions, I certainly gained a healthy respect for that which can not be explained logically; that which just is. The lessons I learned from my long-gone father and newly-lost brother were similarly profound.
I had my own triumvirate of sorts in the past seven days: A DYING TO LIVE book signing event, a memorial dedication of the Stephen L. Crohn Art Gallery, and George's funeral (held April 28th, my father's birthday).
The book event was a proud moment but also very emotional as the group of 10 or so attendees and I discussed spirituality and dying and doctor's visits and individual experience related to critical or chronic illness. The Art Gallery dedication was highly gratifying and deeply disturbing as I knew this was a monument to my brother who was not physically coming back - ever. Finally, the funeral of the very first pastor I ever really knew was heartbreaking. Although he lived a long life, the sadness in the filled-to-capacity sanctuary was palpable as we all knew he was a one-and-only; there would never be another like him.
I am spent.
I recently read one of those inspirational quotes posted on Facebook that usually annoy me when I'm feeling really down. But this one, by Brazilian author Paulo Coelho, caught my eye.
“Never give up. When your heart becomes tired, just walk with your legs - but move on.”
I'm trying Daddy, Steve and George and when I feel your energy around me, it helps a lot.
April 21, 2014
Blessings and Messing with My Mind
The only one who can mess with me is me. This long winter of grief and re-connection to myself, me and I has yielded one answer: I don't know everything and I never will.
The range of emotions I've allowed myself to feel have included:
Fear (of what will become of me with worsening health issues)Anxiety (a blanket that wrapped itself around my shoulders)Sadness (overwhelming at times while I mourn my brother)Guilt (that I am not all that I should have been or can be)Anger (at my brother, at God, at myself for not being more able)Hopelessness (thinking like my brother; that all is lost)Confusion (thinking that all of the above is just a jumble in my mind)Envy (of those who don't seem to have the traumas that have been thrust upon me)And as spring finally arrives, there is:Hope (that the veil is lifting and I am beginning to accomplish goals both big and small again)Joy (my sons are remarkable and make me so proud)Relief (that I've made it through the worst of it)Gratitude (I am warm, I am fed, I am housed, I am loved)Forgiveness (for myself and my brother)The winter of my discontent is finally over.
So, for me, while It's back to basics and getting my priorities in order (yet again!), it's also a time to kick myself in the ass and take risks. Two big work projects loom before me, a book signing event this Thursday and the dedication of the Stephen L. Crohn Art Gallery at Saugerties Public Library on Sunday.
A dear friend sent me this poem, Although I am familiar with the Wordsworth lines I read it twice aloud to let them truly sink in:
Splendour in the Grass
What though the radiance which was once so bright Be now for ever taken from my sight, Though nothing can bring back the hour Of splendour in the grass, of glory in the flower, We will grieve not, rather find Strength in what remains behind; In the primal sympathy Which having been must ever be; In the soothing thoughts that spring Out of human suffering; In the faith that looks through death, In years that bring the philosophic mind.
~ William Wordsworth ~
I will "find strength in what remains behind." I hope you can, too.
The range of emotions I've allowed myself to feel have included:
Fear (of what will become of me with worsening health issues)Anxiety (a blanket that wrapped itself around my shoulders)Sadness (overwhelming at times while I mourn my brother)Guilt (that I am not all that I should have been or can be)Anger (at my brother, at God, at myself for not being more able)Hopelessness (thinking like my brother; that all is lost)Confusion (thinking that all of the above is just a jumble in my mind)Envy (of those who don't seem to have the traumas that have been thrust upon me)And as spring finally arrives, there is:Hope (that the veil is lifting and I am beginning to accomplish goals both big and small again)Joy (my sons are remarkable and make me so proud)Relief (that I've made it through the worst of it)Gratitude (I am warm, I am fed, I am housed, I am loved)Forgiveness (for myself and my brother)The winter of my discontent is finally over.
So, for me, while It's back to basics and getting my priorities in order (yet again!), it's also a time to kick myself in the ass and take risks. Two big work projects loom before me, a book signing event this Thursday and the dedication of the Stephen L. Crohn Art Gallery at Saugerties Public Library on Sunday.
A dear friend sent me this poem, Although I am familiar with the Wordsworth lines I read it twice aloud to let them truly sink in:
Splendour in the Grass
What though the radiance which was once so bright Be now for ever taken from my sight, Though nothing can bring back the hour Of splendour in the grass, of glory in the flower, We will grieve not, rather find Strength in what remains behind; In the primal sympathy Which having been must ever be; In the soothing thoughts that spring Out of human suffering; In the faith that looks through death, In years that bring the philosophic mind.
~ William Wordsworth ~
I will "find strength in what remains behind." I hope you can, too.
