Courage...

If it could only be as easy as a wish for courage like The Cowardly Lion in The Wizard of Oz, we - like he - would all recognize our inner strength and latch onto it for dear life.

But it's not that simple, is it? For some of us, due to chronic illness, PTSD, depression, or other physical or mental ailments, finding the courage to go forward is a daily battle. For others, they choose to end their suffering by completing suicide.

This month, I am honored to be working with Scudder Intervention Services Foundation, Inc. (SISFI) on their Suicide Awareness and Prevention Tour in New York City, Long Island and Westchester County, NY. While I relied on SISFI for support myself after my brother's suicide almost a year-and-a-half ago, I was shocked to learn that during their September tour they interrupted 192 attempted suicides! That's something else!!

The difference with SISFI's 'troops' is that they are truly 'boots on the ground;' that is, they go to the person in crisis rather than referring them to an agency that may only be open Monday to Friday, 9am to 5pm. At any hour of the day or night, SISFI volunteers are available to personally talk to and/or visit individuals in crisis.

As Mr. Brett A. Scudder, SISFI president says: "“It is imperative that our communities rally together to be educated and aware of the mindset of someone suffering with emotional distress and the early warning signs to intervene and prevent them from hurting themselves or taking their life because they feel alone."

And that, in my opinion, takes lots of courage. The suicidal person is in tremendous pain and Scudder's team will go to them and simply hold their hand or talk or listen or give them a hug and tell them they are not alone. Certified in suicide prevention, Scudder knows that traditional avenues available to those in crisis are highly clinical and limited. The goal is to train and deploy dozens of volunteer Mental Health First Aid Responders in communities across his service area and, in the future, beyond.

We must change the paradigm of how we respond to those in distress. We must go to them rather than making them come to us. We must not just be another faceless voice instructing the person what to do on Monday morning.

Hear, hear for SISFI and let's make their mission statement our own:

"TO PROVIDE AWARENESS, SERVICES, PROGRAMS, HEALING AND RESOURCES TO ADDRESS/ALLEVIATE HUMAN SUFFERING AND TO PROMOTE EMOTIONAL WELLNESS, MENTAL/BEHAVIORAL HEALTH AND LIFE SKILLS."

This, my friends, will take lots of courage.

SISFI TOURS

Beginning to end...

We begin so many times in our lives - at birth, first tooth, walking, school, college, career, marriage and so on. We also end equally as many times through changes in personal habits or work, residences, loves, friendships, health, diet and death - either ours or of those we love. Call it a metamorphosis or an analogy of life.

As a young girl I simply wanted to wander in wonder all the days of my life. I wanted to let life unfold and be an observer. I guess that's why I became a journalist as my first career. But stuff happened and plans went awry. And then I got really tired; exhausted by all the daily challenges and changes and hiccups. I (and you) ask ourselves if we can make it through another day.

And we do.

And we delight in the amazing, wonderful things that occur - even the tiniest of treasures, like a bite of a ripe banana.

We also mourn lost opportunities, friendships, or people who've passed away - especially the folks, places or things that held a piece of our soul.

Merriam-Webster's definition of soul is:

The spiritual part of a person that is believed to give life to the body and, in many religions, is believed to live forever; a person's deeply felt moral and emotional nature; the ability of a person to feel kindness and sympathy for others, to appreciate beauty and art, etc.

There are two instances in my life when I knew I truly connected with my soul. The first was when I had Stage IVB cancer and near death experiences and the second has been since my brother died in August 2013.

A sense of soulful, holy spirit is what we are supposed to feel during the holiday season and many of us do. This year, however, I feel I floated through Thanksgiving, Hanukkah and Christmas - detached and alone even though I was surrounded by the love of others. I am thankful for the souls on 'the other side' who made themselves known to me either by images and scents or simply the awareness that they are nearby. Meditation is also a great tool that helps me reconnect my soul to those beyond my reach.

My soul remains raw yet intact. The pieces that have been lost to me will eventually return to fill me up more deeply but differently; like new, bold colors that stay within the lines.. At least that's how I envision it.

And because I know myself better than any other soul, I want to end this post with a humorous quote by children's activist, trumpet player, music producer, songwriter, and television producer Quincy Jones.

"I've always thought that a big laugh is a really loud noise from the soul saying, "Ain't that the truth."

Quincy Jones, Victory of the Spirit

T'is true, indeed. Happy, healthy New Year to all.

At a loss for words...

It's criminal when a writer loses the ability to write. I suspect it is because this blog is so very personal that I have been silent for so long.

You see, as we've slowly slid into the holiday season and I, like many survivors of suicide (the correct term for those who have lost a loved one to a completed suicide), find myself in the depths of grief and longing once again, it didn't help that we finally closed out my "brudder's" storage unit, giving away the last of the items it contained - a shelving unit.

For a year I've been going back and forth to that space - a little haven where I was surrounded by his art, his personal belongings, his essence. Of course, many large and small bits of his 'stuff' are now in my home but it was like going to his grave (where I have yet to go since his headstone was placed) and it made me feel close.

I was his "Twisted Sister" and he was my "Brudder from Anudder Mudder" but that was what made it all so special. He was truly my best friend (even though we fought in recent years) and with our father gone as well, the convoluted combination of holidays we celebrated are no longer as cheery, silly, or fun.

This is when sadness turns into nostalgia, I guess, and that's a good thing.

I've thrown myself into Suicide Awareness and Prevention efforts, helping a wonderful, gentle man launch tours and workshops and conferences in Westchester County, New York. See www.sisfi.org. At times, I don't know if I am the organizer or the participant but my involvement helps in large and small bits, just like my brother's stuff.

I'd be lying if I said I haven't had some very dark days. I have. I want to crawl into that heavenly space where he now lives and feel his embrace, hear his deep, penetrating guffaw, and see his twinkling eyes. Kind of like searching for Santa Claus who is so real but so difficult to catch. He always slips through my fingers.

For those of you suffering physically or emotionally through this holiday season, I send you all the strength of love and prayer that I can possibly muster. In turn, please do the same for me.

Love always,
Amy

My brudder and I nearly 20 years ago. 

Death with Dignity - Brittany Maynard

Coming to terms with anyone's choice to end one's life is a difficult process and I have an unusual perspective from three points of view:

• A recovered Stage 4B cancer patient who was told three times I would die during my harsh, year-long treatment.
• A suicide survivor - the term used when a loved one completes suicide as my brother, Steve Crohn, did a year ago August. 
• A compassionate, health-challenged woman who is contemplating my own choices when and if I get critically ill again.

As 29-year-old Brittany Maynard said: "It's not a decision you make one day and you snap your fingers." 

No, it's not. Seventeen years ago, at age 36 and married with two young children, I had to fight the urge to let go - to surrender to the disease and end the outright pain it inflicted. I was determined to live because of my children. However, when it was all over, I said I would never, ever do it again; that is, I decided then and there that if I was ever re-stricken with cancer, I would not fight it and I would let nature take its course. Now I'm not so sure. 

My brother chose to die with his dignity intact. Suffering from life's challenges, personal trauma and mental illness, he selected the date, time and place and how he would end his life. Found with a smile on his face I 'see' him that way today; joyous and in Heaven dancing with friends and family. As much as I railed against his actions for months, I have come to realize it was his decision and he felt it was best. I accept it but I will always miss him. I just don't question his decision anymore. 

Finally, here I am today with news just last week that my white and red blood cells are, for the first time since 1997, in the normal range. I am no longer immuno-compromised. It is truly amazing what the human body can do - in time. I still suffer from Lupus, fibromyalgia, gastroparesis, severe osteoporosis, depression and anxiety but I manage day-to-day with no thoughts of ending my life. 

If time is only going to make you suffer more, I do believe we should have the right to our own life-ending decision. Maynard, who had terminal brain cancer with just months to live, had to move to Oregon to have that option. Other states are beginning to craft legislation that will allow assisted death in cases such as Maynard's.

Yesterday, surrounded by family and friends, Maynard wrote:

"Goodbye to all my dear friends and family that I love. Today is the day I have chosen to pass away with dignity in the face of my terminal illness, this terrible brain cancer that has taken so much from me … but would have taken so much more. The world is a beautiful place, travel has been my greatest teacher, my close friends and folks are the greatest givers. I even have a ring of support around my bed as I type … Goodbye world. Spread good energy. Pay it forward!" 

May we all have the option to die with dignity and grace. 

Britanny Maynard in People magazine

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.

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.

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 time

You're only dancin' on this earth for a short while

And though your dreams may toss and turn you now

They will vanish away like your dads best jeans

Denim blue, faded up to the sky

And though you want them to last forever

You 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 time

There'll never be a better chance to change your mind

And if you want this world to see a better day

Will you carry the words of love with you

Will you ride the great white bird into heaven

And though you want to last forever

You 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 you

Will you ride, oh, oooh

Oh very young, what will you leave us this time

You're only dancin' on this earth for a short while

Oh very young, what will you leave us this time

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 usually 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 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 Delilah Jones of Imagine Publicity  followed by Donna R. Gore a.k.a. "Lady Justice," host of Shattered Lives radio program and premier blogger on August 25th. Donna's first book will be published soon.

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...

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.

SPEAK UP!

I am angry. It takes a lot for me to get angry but an experience I had this past weekend at my brother's heartwarming memorial art exhibition at Hyde Park Library in Hyde Park, New York has me uncoiled.

Amid the bittersweet beauty of the paintings brightly lit and hung with care; the tears, hugs and laughter among friends and family (including new friends brought in by the library), one gentleman stepped forward to speak to me. He had known my brother, although not closely, he said. He spent part of the last two weeks of my brother's life with him. They rode together in my brother's car discussing the difficulties my brother was having. They spoke of my brother's lessening options about housing, healthcare, travel, depression and my brother clearly stated that one of his choices would be to end his life. No one in my brother's close circle of friends or family had any inkling that this was something he was considering.

Tears sprung to my eyes as he recounted this conversation and mumbled about how he wasn't so close to my brother and didn't know who to call or what he should do. I called my sister over to continue the conversation and I bowed out. I wanted to hit him. I wanted to scream. I wanted to ask him why he didn't say something to anyone?

According to the MAYO Clinic and other suicide prevention sites, if one speaks of suicide they must be taken seriously. Speak up even if you might lose the friendship because you will save a life.

If you believe someone is in danger of committing suicide or has made a suicide attempt:

• Don't leave the person alone.
• Call 911 or your local emergency number right away. Or, if you think you can do so safely, take the person to the nearest hospital emergency room yourself.
• Try to find out if he or she is under the influence of alcohol or drugs or may have taken an overdose.
• Tell a family member or friend right away what's going on.
• If a friend or family member talks or behaves in a way that makes you believe he or she might commit suicide, don't try to handle the situation without help — get help from a trained professional as quickly as possible. The person may need to be hospitalized until the suicidal crisis has passed.

Furthermore, taking action is always the best choice.

"When someone says he or she is thinking about suicide, or says things that sound as if the person is considering suicide, it can be very upsetting. You may not be sure what to do to help, whether you should take talk of suicide seriously, or if your intervention might make the situation worse. Taking action is always the best choice."

There are suicide hotlines everywhere; such as the National Suicide Prevention Lifeline. The telephone number is:  

1-800-273-8255

I know this chap had no ill intentions. Perhaps he felt uncomfortable since he didn't know my brother very well and wasn't sure who to call. Maybe he wasn't even getting the story right since he seems to have told my sister and I two different versions. So, all I can say to those of you who may find yourself in a similar situation, please err on the side of caution. That person's family will be forever indebted to you. 

Steve Crohn's Paint Palette. 

Boundaries with Hair

I had a dream. Since it was the second time in as many weeks that I had this same dream, I found it disturbing enough for me to Google dream interpretation to try to understand what it meant.

In the dream, I had my childhood very long hair hanging over my face yet I was bald on the top of my head - ghastly white bald. I was leaning over so others could see this strange occurrence.

So, here's what the interpreter site said:

"To dream of hair covering your face suggests an emotional anxiety in the company of others and particularly in intimate relationships. Looking out from behind a veil of hair in a dream shows that you may be keeping your true feelings hidden as you have a deep fear of rejection in close relationships."

Well, that pretty much nails it.

Since my brother's death nearly seven months ago, I lost my 'rock' - the intensely close relationship that grounded me. And in my brain-addled opinion, by taking his life, he ultimately rejected me. At least this is how I have been feeling about it all and it is spilling over into my intimate relationships with my husband and close friends.

It further explains:

"To dream of hair falling out indicates extreme fears may be running unchecked in your emotional body. There is a strong message here to examine your inner world before stress manifests itself from uneasiness. If the loss of hair in a dream is random and in clumps, a fear of death is lurking and needs to be addressed so as to improve your general demeanor."

Fear of death? Absolutely, but not mine. I am scared that other loved ones will start falling away; abandon me. Ah, the crux of my whole childhood, my book, and my life - abandonment.

At the same time during this experimental healing time I've had to revisit certain boundaries in relationships. Are these real relationships where I actually receive something rather than just giving away too much of me? Am I 'rescuing' people because it makes me feel good? Where do I begin and end in each of my close relationships?

Perhaps the fear- and anxiety-invoking hair also represents my need to establish some healthful boundaries that, according to one anonymous Facebook post, "are like Energy Doors that help us manage the flow of energy in our life. At times it's useful to keep the door open in order to invite in and receive the blessings from others and our environment. At other times, we need to keep the door shut for our own sense of security, nourishment and well-being."

Well, yes again.

I get it. I've been so busy these past months with grief, the business affairs of my brother including being the spokesperson for newspaper and magazine writers, planning and managing upcoming memorial art exhibitions, promotion of my own DYING TO LIVE, the Court Appointed Special Advocate (CASA) training, and visiting my doctors, that I've unknowingly created boundaries. Sure, I can say they've been erected due to lack of time, but I believe they are also sorely needed to help me heal. I may have offended some but I know those that are true to me will understand my fakakta process. By isolating myself and focusing on my grief process, my physical health, and my work, I've set up some walls while I fumble around and try to rebuild my inner core, my Statue, as described in my memoir.

I peek over the walls every now and then and I've even walked out around the barriers from time to time in ways both big and small, like fumbling around in storage units organizing nearly a thousand pieces of my brother's art or saying 'yes' to a book signing event. But I've set some boundaries, and as hackneyed as it may sound, it's normal. Phew!

Now if I can just have a good hair day! 

Artist: Alice Mason.

  

#Boundaries #TheSoulfulWoman

Let the Children Speak

Recently, I was connected to another child advocate whose voice and messages are compelling. I do not know how Brett A. Scudder accomplishes ALL the goals and objectives, including coming to the aid of those who are suicidal he lays out in his mission statement, but I know I want to remain in his orbit to improve societal conditions overall and see how he effects change in and around the New York City area and beyond.

This particular post he shared struck a chord and I asked if he would agree to be a Guest Blogger. I hope you enjoy his commentary as much as I did and find reason to listen to the children, even the smallest of children, so we can protect their interests as well as the safety of their parents and caregivers.

(I placed certain sections in bold.)

GUEST BLOGGER: Brett A. Scudder of the New York Humanitarians Network "NYHN", NYC Community Activists Network, and SISFI's Abuse & Suicide First Aid Response and Wellness Centers “ASFARWC”

"Got a distress call from a 29y/o single mom going through real challenges with her mom that's affecting her 7y/o son. For the 2 1/2hrs we were on the phone she cried deeply expressing her not wanting to live, not wanting to wake up, being so tired, frustrated and disappointed with her mom and questioning the evil mindset she has and is dishing out on her and her son because they are now living with her. This triggered the issues of the suicide of her brother and challenges she faced because her brother took his life because she was ill and he felt that he couldn't take care of her nor watch her suffer like that. For the entire 2 1/2hrs I spoke only a few times to remind her to breathe as she opened up.

"She offloaded some deep, painful and hurting things and while she cried, her 7y/o son watched and listened as she tried to find balance in all the madness. After a while he figured it was time to step in so he walked up to here and I heard this, 'Mommy, why are you stressing so much, huh. You don't have to be so stressed. We don't have to stay here. We can leave and go somewhere else so you don't have to stress and cry so much. Mommy, please stop crying and let's go.'  

"My eyes opened wide, ears perked up, I held my breath and my heart stopped beating, I was silent, intrigued, mesmerized and listened attentively to his every word as now he was right next to her talk and I could hear him clearly. I envisioned the look on his face while saying that and it just burned my heart, burned to know that at 7y/o he had to witness and experience seeing his mother break down like that. She had always been very careful of not breaking down in front of him but this time it was too much, too much for her heart and mind to handle and she just open the flood gates and let the tears flow.

"She tried telling him she wasn't crying and that she was ok but unbeknown to her, she was so caught up in the emotional breakdown she didn't realize what was happening to her and how she was reacting. I finally got her to calm down and relax enough to have a conversation with him so they both could breathe. She was so worn out she was tired but couldn't find sleep. I sent her one of my favorite 3hrs Zen/Spa instrumentals for them to lie down to and rest. I told her to keep me posted as the night progressed if she still wasn't able to sleep. She had to be at work a few hours later but managed to get some rest from what she text me when she got to work.

"The message in all this is, as adults and parents, when going through life’s challenges, stressors or traumatizing circumstances, our children are aware of, understand (to some extent) and are sometimes present during them, and what affects us affects them as well. They see, hear, know and understand more than we give them credit for (because of their age), especially the children who we believe don’t understand or can handle things. We misunderstand that age doesn’t limit intellect and so even at their young ages some of them truly do know and understand more than we know because we talk and act around them knowingly and unknowingly at times and they learn quickly. It’s not for them to be able to handle things, it’s for us to communicate with them so they understand the level that applies to them and being able to cope with and overcome the impacts. 

"Too many of our youth are living the hurt, pain and suffering we as adults and parents face because we bring it to them, or we are around them while being impacted by challenges and our attitude, behavior and methods of dealing with and coping (or not) does impact them and we must recognize that. In most cases they don’t get emotional support to deal with the impacts of seeing a parent (especially a mother) go through their challenges and so they internalize the emotions which in far too many cases manifests into anger, violence, abuse and hatred of others and self and other behavioral issues. Yet, unchecked, we get angry and upset at them for their behavioral issues not realizing that we may very well have been the cause of the issues and now we're compounding it on them even more.

"This is a very serious issue and I can’t talk about it enough so let’s keep talking about it and helping ourselves and our children to effectively deal with life’s challenges because sometimes it’s not by our own doing that they happen but by those we allow in our lives.

"Be prudent in how you act and speak around children.

"I didn’t tell her that when she called I was on my way to the emergency room because I wasn’t feeling well so I couldn’t take her call or talk with her. I pretty much stopped in my tracks when I heard the distress in her voice so she could talk about what was happening. This way I would be able to see if it could wait for me to get checked out first. While she talked, I stood outside so as not to lose the call or have too much distractions. Thank God I was very well layered up for being out there so it was ok. I spent the night in the ER under observation and came home the next morning. No one ever plans for life challenges to hit us but when it does, the most important and life-saving thing one can have and hope for us someone willing to listen and take time to do so effectively. 

"This is why I take my work so seriously because I know that at any breath a call can come in and it may be someone one step away from a life threatening situation and I must be ready to effectively react and respond to be that lifeline. If I told you how many suicidal cases I have and have worked with you’d be amazed. I LOVE my life, work and ministry of Love. I wouldn’t want to be anywhere or doing anything else than this. One Love."

* * *

As you know, I often write about The Adverse Childhood Experiences Study that proves negative childhood experiences can impact adult physical illness. My book describes my own traumatic experience and how my early childhood may have resulted in the terrible auto-immune diseases I suffer as an adult, including a bout with Stage 4B cancer.

Thank you, Brett, for being such a dedicated advocate for so many. Specifically, I thank you for your work on behalf of all our children.

Brett A. Scudder

When the Survivor Needs Help to Survive

Everyone knows me as a survivor and relies on me for guidance. It's a role I selected naturally and honestly after a two-pronged, near-fatal battle with cancer and Lupus in the late 1990s followed by post-traumatic stress disorder, depression and continuing chronic illness. Add early childhood maltreatment as evidenced by the National Centers for Disease Control and Prevention 20-year Adverse Childhood Effects Study that links childhood trauma to long-term health and social consequences and it's a miracle I stand upright.

So it's no surprise that this survivor needs help to survive now and then; particularly after her beloved brother commits suicide six months prior and sends her into a tailspin. I know all the right things to do but mind over matter is easier than it sounds, even for a 'survivor' like me who inspires others to keep on keeping on. In fact, a friend recently told me I need to read my own book; but I simply think I need to add a Survivor's Survival Kit to the second edition.

Perhaps I can fashion such a kit out of the the essentials the United States Government says we need in case of an emergency:

WATER: Yup. Stay hydrated to replace all the tears. One gallon of water  per day for every day I cry for more than one hour.
FOOD: Proteins are best to keep up my strength and colorful fruits make me smile but carbohydrates, especially cake and cookies, are permitted. They make me feel better, even if only for a short while. All should be non-perishable in case I don't get out of bed.
BATTERY-POWERED OR HAND CRANK RADIO: Ha, ha, ha! Nope. I'll take my chances with my laptop so I can see how all the happy, pretty people are living their care-free lives. I will also get briefly elevated or further saddened by all the sentimental viral posts I must see or watch plus the funny ones that do make me crack a smile here and there.
FLASHLIGHT AND EXTRA BATTERIES: Okay. I'll have that, too, for when I can't sleep and I need to read under the covers.
FIRST AID KIT: Ideally, mine will be filled with a Peach Bellini, a card from a friend, an amethyst crystal that belonged to my brother, and all my medications so I don't have to worry about refills EVER.
WHISTLE TO SIGNAL FOR HELP: My dog knows my whistle and curls up next to me when I am sad or suffering.
DUST MASK: This will help keep visitors away. They will think I have a disease.
DUCT TAPE: This is used to cover the mouths of all those asking for my advice. I'm sorry I can't help you right now. SHUT UP!
MOIST TOWELETTES: The closest I get to a shower some days.
WRENCH OR PLIERS: To throw at things when I'm angry.
MANUAL CAN OPENER: Also good for throwing.
LOCAL MAPS: I'm not going anywhere so I don't think I need these in my survival kit. If I did go somewhere, it would be a place as yet unknown to me or others.
CELL PHONE WITH SOLAR CHARGER: Do they really make those things? And if everyone is in survival mode, will we all have them? I doubt it so who would I be calling? In my opinion, also good for throwing.
OTHER: This is a random category I have added. It holds many boxes of tissues, cream for my sore nose, English breakfast tea, a personal chef, Bananagrams, stupid television, books, and, most importantly, the will to live. 

That's my kit! What do you think? Have any things you can add? Right now, though, I'm going to watch Let's Make A Deal. Comedian Wayne Brady as the host can always brighten my day.

What the Dead Do

It's been four months since losing my brother to suicide and I have just spent an amazing week with my eldest sister - she and I alone. Because she is 18 years older than me and our brother was 14 years older than me, I did not have much 'we' time with my sister over my lifetime. She married young and started raising a family while I was still learning the alphabet. My brother, however, seemed ever-present and a companion in good times and bad. His loss, as readers of this blog know, has been particularly hard on me.

Yesterday, my sister and I went on the Silent Cities tour at Brookgreen Gardens in Murrells Inlet, South Carolina where I own a condo. Besides being bounced around like balls in a Bingo barrel, we didn't fully realize where we were headed for the two-hour-tour. We visited cemeteries in this 4000-acre plus plantation, gardens, and sculpture fantasia - one erected by the original European owners in the 1700s and another cobbled together on owner-donated scrub land by the African slaves who had worked the richest rice plantation in America pre- and post-Civil War.

Some of the Africans were enslaved when born and free when they died. Many were children in both. Understandably, the customs of each were vastly different, mainly due to economics. The European-Americans erected large rectangular monuments using marble and lengthy engravings about how one lived and died. The slaves would mark a loved one's grave with a shell or a rock or a hardened bag of cement. Some fashioned headstones and engraved them using a nail. Particularly touching was a child's grave with ancient toys placed all around it; untouched as is the custom. Anything placed on a slave grave stays at the gravesite and Brookgreen staff make sure to honor this tradition.

A slave grave marker created using a bag of cement. 

So stepping lightly among the barely visible 'head' stones and the larger more prominent ones, I realized that my sister and I were visiting cemeteries on the date our father died in 2002, January 9th. I thought about this and teared up thinking how ironic it was that we were there on this day and, also, visiting the Silent Cities while still seriously mourning our brother.

Because of an enigma that occurred on the day he died, our sign that my brother is near is a soaring eagle so we kept looking for one to no avail. However, on the way out, we were struck by the beauty of an eagle sculpture crafted to appear in flight. There was our eagle.

Finally, I realized that our father and brother were busy arranging all of this - bringing my sister and I together, closer than ever before. We vowed to repeat a trip yearly. This never would have came about if our brother hadn't passed away.

The dead do things we don't expect. Thank you, Daddy. Thank you, Steve.

* * *

I would be remiss if I didn't mention my two other living siblings who I love dearly and grew up with in an unusually blended household as described in my book DYING TO LIVE: Running backwards through cancer, Lupus and chronic illness. I always know they are there for me and I treasure our times together past and present. 

Christmas Step-In-Time?

Is the Christmas spirit here in time to spare me my grief over the loss of my brother to suicide four months ago? To file away years of Christmas memories that are near and dear? To say 'enough' and create new memories; change things up so my heart can be open to reinventing myself after yet another trauma?

I'm doing my best yet I feel, like most 'survivors' of disease, trauma, or loss, that it might be impossible.

The movie Saving Mr. Banks about P. L. Travers, the author of the Mary Poppins series, sheds light on this difficult topic. Expecting a lighthearted film about Walt Disney and 'Mrs. Travers,' as she insists she be called, I was proven wrong yet not disappointed.

[SPOILER ALERT]

An early childhood filled with turmoil and loss, left the very grown-up Mrs. Travers (nee Helen Lyndon Goff) unable to part with her imaginary world except as she wrote it. She was unable to give the gift of her pretend paradise to the rest of us on film a la Disney's vision for nearly 20 years and Disney never earned authorization for any of her subsequent books. Ultimately, she did but was none too pleased with the results.

You see, Helen Goff retreated into a world of fantasy (enabled and encouraged by her charismatic yet alcoholic father) as a balm to harsher realties. So, too, did Disney in his own way, according to the movie. Yet Disney chose to change his real life experiences with his fanciful mind, creating characters and rewriting history to cope. That, he explains to Mrs. Travers, is how to escape the awfulness of  her youth and turn it into something wonderful. I was awestruck by the concept.

[END ALERT]

As a lifelong writer, I  penned non-fiction works; first for newspapers and magazines and then for corporate clients and, finally, in a memoir about dealing with near-fatal and chronic illness. I haven't descended (or ascended) into a world of fantasy - yet. I have started fiction novels but have preferred to pour out my heart in truth. Maybe it's time to stop. Maybe it's time to turn my attention towards characters and situations I can control with happy outcomes. I simply do not know.

At this Christmas crossroads, I find myself longing for my fantastical brother who, like Disney, could make up a world with a few paintbrush strokes as well as silly songs and stories. Imagining the end he chose for himself is nearly as unbearable as it is unacceptable. I know I have to deal.

Step In Time is one of the most favorite and beloved songs from the 1964 movie version of Mary Poppins. It's refrain: "Never need a reason, never need a rhyme..." embodies living with joy; without a care in the world. It's a song I danced around and around with my children when they were young. It's a song that fills you with hope and the 'happies,' as my children called it.

And it's a song I can choose to play over and over in my head to make this Christmas new and fresh and imagine my brother, like carefree Bert, doing the dance atop the clouds.

Merry Christmas...

Dick Van Dyke in Mary Poppins; 1964

Finding grace...

A writing hiatus of about three months now has left me with lots to ponder. Most of all, after the suicide of my beloved brother, I seek ways to honor his legacy. Knee-deep in his belongings (after a long red-tape tangle of bureacracy and the move of his lifetime of goods and hundreds of pieces of his artwork to a storage facility near my home), I sort carefully and cautiously. Yet, there are moments when I feel like I am throwing him away, casting his precious memories aside.

This is where I must find the grace to select the items that comfort me and offer the rest of his things to extended family and friends. His art, however, should be shared widely in my opinion as it speaks loudly of a lifetime of growth and raw emotion during a post-WWII era of enlightenment and change. The things we are finding are extraordinary, including photographs of his participation in the Selma to Montgomery, Alabama march in 1965 led by Dr. Martin Luther King alongside his vivid sketches and paintings that he produced for over 50 years. He did lead a colorful life, in more ways than one.

And there is my own battle with illness and trauma where I find myself returning to that dark hole known as post-traumatic stress disorder (PTSD). I've learned that I've carried PTSD signs and symptoms my whole life, most prounounced during my life-threatening battle with stage 4 cancer. In fact, psychiatrist and writer Mark Epstein writes in an article entitled The Trauma of Being Alive in The New York Times that there is also a human condition called "pre-traumatic stress syndrome."

"Trauma is not just the result of major disasters. It does not happen to only some people. An undercurrent of trauma runs through ordinary life, shot through as it is with the poignancy of impermanence. I like to say that if we are not suffering from post-traumatic stress disorder, we are suffering from pre-traumatic stress disorder. There is no way to be alive without being conscious of the potential for disaster. One way or another, death (and its cousins: old age, illness, accidents, separation and loss) hangs over all of us. Nobody is immune. Our world is unstable and unpredictable, and operates, to a great degree and despite incredible scientific advancement, outside our ability to control it." - Mark Epstein

So, I search for "the quality or state of being considerate or thoughtful" as Merriam-Webster offers as one definition of grace. And I try not to leave myself out of the benefits of that grace; to remember that it is a quality that I want and need to process yet another trauma in my life.

Once again, my legs were knocked out from under me on August 24, 2013. Three months later, it is time to accept grace into my life again and carry myself with the energy of my brother's soul. He is my greatest supporter and source of strength. He will carry me back to my work and my life. He will always be in my heart and his talents will be brought more to light through me and my writings and the accomplishments of the generations of family that are already springing forth.

Sane and Able?

Is it possible to renew one's life after personal tragedies hit the double digits? Yet again, while I try to cope with my varying degrees of chronic illness due to cancer, Lupus and fibromyalgia coupled with the traumatic loss of my brother nearly six weeks ago, I am seeking to be sane and able.

How many blows are too many? When does the day come when enough is enough? The sheer number of traumatic events that have hit my little family of four over the past 25 years have ranged far and wide, from serious injuries to 9/11 to near fatal illnesses to shocking deaths plus more. We are the people that others pity. 

Paradoxically, is it enough that I have my immediate loving family and friends? Is it enough that I am free of major worry about finances and can sit in two modest, comfy places that I call home where at one I roam the beach and at the other I can light a fire, gaze freely at the majestic Hudson River, and do nothing? 

Is it enough that I've been married to the same man for almost 30 years and we've settled into a comfortable albeit routine pattern of living? Is it enough that I have food to eat, clothes to wear, a car to drive, a bed to sleep in and grown children who still want to talk and be with me? 

I must answer "yes" and continually remind myself I am very, very  blessed. So why is it so hard.?

You see, I'm not an "enough" sort of gal, however, and this land is foreign to me. I'm a goal-setter and charting a revised course one more time isn't easy. Recently, my husband and I both joined a suicide survivors support group and went to our first meeting last week. Since both our brothers took their own lives (two years apart), we think it will be helpful. Maybe we'll go back. 

So, I guess its enough that I can still kick myself in the butt to to live regardless of the pain; regardless of the shame; regardless of the guilt; regardless of the grief. I find the nights are the hardest. This is when my nerves jangle and my head aches and my sorrow feels like knife blades. I can't settle down to sleep. I wonder what's next. I pray. 

I know I am clinically depressed. I've been here before, albeit a long time ago when it was also tied to tremendous grief. And I am getting help and taking things one step at a time. After being on such a high with the launch and great reviews of my book, I find myself completely upside down; swirling in a vortex and weighted down with worry and pain. 

I know. It does get better. As the sayings go: Time heals all wounds. God only gives you as much as you can handle. This too shall pass. When God closes one door he opens another, etc. etc. Those of you who follow my blog or who have read my book are aware of my internal guidepost - my Statue. It's a cement figure of a human that I envision when I need to 'take my temperature' - understand how I am feeling. Today, my Statue is in medium-sized pieces all over the ground. That's better than crumbled or dust. I'll take it - for now. 

There is no point to this blog other than to say I'm still trying my best and following my own advice about taking charge of your own health and well-being. Perhaps if I try through my tears, you will, too. And I will gladly accept any words of encouragement through comments on this blog or to ascrohn@gmail.com.

* * *

NOTE: As is typical, we find that my brother is receiving fame in death that he should have had in life. Stories have already been written in The New York Times, The Los Angeles Times, NPR and various other newspapers around the country. I have also been contacted by New York Magazine that will be compiling a feature about his interesting, varied, and fully-lived life as well as The Lancet for the contributions he made to medical research. My own book takes a back seat for now as I tend to the business of honoring my brother's legacy. 

Back to the Basics!

Those of us with chronic illness are constantly challenging ourselves to get through the day. With the recent trauma of losing my brother to suicide, I have to check myself all over once more.

Will I go into a Lupus flare? Will my gastroparesis act up and make me unable to eat? Will I lose precious sleep? Will my headaches return? Will my joints hurt more than usual? Will I fall into a depression? Do I have to increase/decrease medications and supplements?

Can I take a shower today and not exhaust myself? Can I cook a meal? Can I go grocery shopping? Can I walk the dog? Can I, can I can I? And what about my ever-present To-Do List that is growing and growing and growing!

So it's back to the basics for me. Once again a Wiley Coyote anvil has fallen on my head and I have to start with 'activities of daily living' like getting out of bed, showering, and dressing. I have to start at square one. I've been here before and I know you have, too.

Chronic, unrelenting illness is not insurmountable if we change how we look at things; perhaps, turn them upside down. In Psychology Today, a writer suggests a NOT-TO-DO list. What a concept?

Toni Bernhard, J.D. a former professor at the University of California and the author of How To Be Sick has compiled a wonderful list of NOT to dos like:

• DO NOT say 'yes' to an activity if your body is saying 'no.'
• DO NOT wait until the last minute to get ready for something.
• DO NOT strive for a spotless living environment.
• DO NOT speak unkindly of yourself.
• DO NOT wear uncomfortable clothes. (Yeah. I can feel the little rough fabric pills inside sweat pants or pajamas and always wear them inside out. They hurt!)

And one that I like best is DO NOT think about pleasures from your pre-illness life, freeze them in time, and assume they'd be as much fun today. They just can't. 

Her point is that everyone's life is constantly changing and rearranging itself. As she says: "Relationships change, job conditions change, and bodies change" for both the healthy and the ill. All of us have to adjust and readjust and sometimes it's a daily thing. 

Will I adjust and settle into yet another 'new normal?' I believe I will, in time. I took a very long, fast-paced walk today (with my trusty little dog, Shadow by my side) to see if I could catch up to what I had attained before my brother died. It has been five weeks and I'm not even close. But I tried. 

The anvils will continue to fall and, like you, I will bear the brunt of them - slowly, with compassion for myself, and with a new NOT-TO-DO list ingrained in my brain. 

FIGHTING TO LIVE: When does the pain become too much?

I often write about pain, both physical and emotional. Those of us who have survived life-changing traumatic events or suffer from chronic illness (or both) endure our fair share of pain.

But when does pain reach a level that is beyond our endurance? When do we know?

My dear brother, Stephen Lyon Crohn, knew and now it is public. As reported in the The New York Times, he took his own life. "The Man Who Couldn't Catch AIDS" was still susceptible to a lot of everyday things that cause searing pain. Of course the story has gone viral and, not surprisingly, the 'haters' (as my son calls them) are leaving comments of questionable taste and accuracy. It is taking quite a bit of strength for me not to register and sign in to all these 'news' and other sites and leave comments of my own. But I won't take the bait.

How my brother died is vastly less important to me than how he lived. His sheer love of life during the 66 years he was here with us was the wonderfully contagious thing about him. You can see it in his art. You can read it in his words. You could feel it in his 'snuggle hugs' as one of his friends described them. This world is, indeed, a better, more beautiful place because he was here.

Living With Pain

But I want to know how we continue to fight to live with our tragedies and traumas and the hurts that accompany them? How do we choose life day after day? Simply put, there is no easy answer.

In a September 2011 article in Psychology Today, Shawn T. Smith, Psy.D. explains:

"There is a certain kind of thinking that fuels suicide, and for most of us it is a terribly difficult idea to sit with: suicide is problem-solving behavior. In the mind of someone considering suicide, the act may seem like an expeditious and effective way to eliminate pain."

My brother was an extremely logical thinker. He was that 'problem-solver.' And while his logic in the case of deciding to take his life, may have been flawed, it led him to a conclusion that felt right for him.

Smith continues:

"The thought of suicide most often occurs when a person feels they have run out of solutions to problems that seem inescapable, intolerably painful, and never-ending."

We all have problems that seem insurmountable at times. My brother was no different. To respect his eternal privacy, I will not outline the WHYS and HOWS of his final act. Many are asking (rudely) and he left some answers; but they are not for me to reveal. It is my job to help my family and I heal. 

There are a number of resources for people who are thinking of suicide: Hotlines, websites, support groups and each begin with CALL SOMEONE or 911. Of course, we ask why my brother did not make that one last phone call. Why didn't he reach out before... But we've learned he had his reasons. We have to accept his choice. Enough said. 

Now, though, we find we are the sufferers. According to supportaftersuicide.org:

"Many people bereaved by suicide feel alone and isolated. The silence that surrounds the issue of suicide can complicate the experience. Because of the social stigma surrounding suicide, people feel the pain of the loss, yet may not believe they are allowed to express it."

Ayup. It's just awful. I visit his website daily - Crohn Studio - and I check his Facebook page for new messages that might make me breathe more easily, ease the lump in my throat and close the hole in my heart. My sister and I decided to create a Facebook memorial page soon. In the meantime, we field phone calls from reporters and friends, colleagues and admirers, family and old school chums from grade school. He certainly left an indelible mark.

Irreconcilable Differences 

I would be lying if I said it wasn't difficult for me to reconcile how I fought to live, died to live, and still take one step in front of the other every day with painful, frustrating remnants of cancer treatment, Lupus and chronic illness. My brother stopped stepping up the stairs. I have to remember that it was his choice; maybe not my choice, but a choice nonetheless.

Looking for quotes on living and treasuring life, I found some inspiration in words attributed to George Washington Carver, a former slave who became a celebrated inventor, botanist and chemist until a tragic fall down the stairs led to his death at age 78.

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving and tolerant of the weak and strong. Because someday in your life, you will have been all of these."

My brother was all of these. I guess the last person he could be tender with was himself. Or was he? 

Part of Carver's epitaph could be my brother's own:

"HE COULD HAVE ADDED FORTUNE TO FAME BUT CARING FOR NEITHER, HE FOUND HAPPINESS AND HONOR IN BEING HELPFUL TO THE WORLD"

This is how I will remember him. This is how I will honor him. This is how I will choose to go on.

Gravestone of George Washington Carver