Levity, brevity, clarity, wit...

Levity, brevity, clarity, wit. This phrase, coined by my brother, Steve Crohn, years ago, became our writers' motto since he was a writer and editor, too. In anything I write or say, I make sure I follow this credo because it works in business and in life. Truly!

Today, however, I am trying to get my doctors to adopt this approach. Wouldn't it be great if an appointment went something like this:

DOC (with direct eye contact): Good afternoon, Amy. What exactly is bothering you today?
ME: I can't digest food.
DOC: Is that before or after you've eaten it?
ME: After, of course. (I chuckle)
DOC (puts hand on my shoulder and smiles): Of course it's after. And how long has this problem been going on?
ME: Six months.
DOC: You mean you haven't pooped for six months?
ME: Sort of.
DOC: Do you also burp a lot?
ME: Yes.
DOC: So it's coming out one end but not the other?
ME: Yup.
DOC: Interesting (he sits down)
ME: What are possible diagnoses?
DOC: Hmmm. Perhaps it's the Gobloots like Lucy had in an episode of I Love Lucy. We will get to the bottom of it, pun intended. I don't want to unnecessarily cause you alarm when it's, most likely, a minor issue.
ME: Thank you, Doc. Do you know you look like Bradley Cooper and I want to kiss you?
(C'mon! We've all had at least one doctor like that? )
DOC: Sure. Come here.....(Hee hee)

The point is that the Doc is focused, not shuffling papers, not answering the phone, not distracted by what's going on outside the window, and is directly and clearly taking care of me with the four qualities I describe above.

• He has levity or "lightness of mind, character, or behavior." (NOTE: This does not mean uninterested or uneducated. It means open-minded and acting with an open heart.)
• He's brief but to the point. 
• He's clear and lucid "as to perception or understanding and his words are free from ambiguity."
• He's witty because his keen perception and cleverly apt expressions "make connections between ideas that can awaken pleasure." (Eye contact. Touching my shoulder. Ricky Ricardo. Not distracted and that kiss!)

According to Lauren Block, a former Johns Hopkins University fellow in an article entitled  5 WAYS NEW DOCTORS FAIL AT BEDSIDE MANNER from a study conducted by the University: "It’s no wonder patients don’t feel connected to what we are telling them, because many times we are not doing as much as we could to make that connection.” The Johns Hopkins study also revealed that only 10 percent of patients can name a doctor who cared for them in the hospital.

Moreover, new doctors performed all five of the recommended behaviors like touch, eye contact and sitting down, during just four percent of all patient encounters. They were only slightly more likely to introduce themselves to patients during their first encounter than during a later one.

And good bedside manner has been proven to have a positive impact on patient health!

From a study at Massachusetts General Hospital, lead author and psychologist John Kelley says: "Our results show that the beneficial effects of a good patient-clinician relationship on health care outcomes are of similar magnitude to many well-established medical treatments." He added that "many of these medical treatments, while very important, need to balance their benefits against accompanying unwanted side effects. In contrast, there are no negative side effects to a good patient-clinician relationship."

NO NEGATIVE SIDE EFFECTS TO A GOOD PATIENT-CLINICIAN RELATIONSHIP. Hear that doctors?

The study goes on to say: The review found that relationship-focused training had a small but statistically significant effect on the specific health outcomes in patients with obesity, diabetes, asthma, or osteoarthritis. Among other things, it could affect weight loss, blood pressure, blood sugar and lipid levels, and pain. In fact, the researchers noted that the impact was greater than the reported effects of low-dose aspirin or cholesterol-lowering statins for preventing heart attack.

The researchers all say hospitals and training program officials can take simple steps to improve things, such as providing extra chairs and photos of the care team in patient rooms. They suggest adding lessons on etiquette-based communication to the curriculum. Really? 

Needless to say, I am still Dying to Live and hope to follow 'doctor's orders' when they are delivered with levity, brevity, clarity and wit.

Marcus Welby where are you now? Never mind. I'll *ahem* take that kiss from Dr. Steven Kiley (a young James Brolin) instead.

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

Crohn's Disease ... No laughing matter

Yes, I am related to Dr. Burrill B. Crohn. My grandfather, Myron, was his younger brother. This fantastic article was just published about the discovery of regional ileitis and how my brother, Steve Crohn, also contributed to far-reaching medical science leading to a cure for HIV.

I hope you find it interesting and educational.

The Pharmacologist - September 2014

Article begins on page 132.

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

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...

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.

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. 

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. 

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. 

Rocks for Christmas?

Turns out, we could do worse. While coal as we traditionally know it is dark, ugly and hard, there are as many variations to this rock as there are to individial people. There are actually four types of coal that are broad and beautiful. It can be brilliant or dull; hard or soft; lumpy or smooth. And at Christmas, it can be downright mean if placed in a child's stocking.

My practical joker father once did something quite unwise. One year along with all the gifts my now-deceased brother, Steve, received, he also put lumps of coal in his Christmas stocking. It affected my brother harshly and he often mentioned it throughout his life.

Perhaps, however, as some sort of blunt childhood reversal, he became a collector of rocks, crystals and stones of all types and variations, including coal. I recall walking with him on beaches or among trees and leaves or even on the streets of New York City and he would stoop down as soon as something caught his eye. Some believe that rocks and crystals have healing and, even, spiritual properties. My brother believed this and would gift me with unusual pieces throughout the years.

After his death nearly four months ago, one of the items I selected to keep was a bowl of his rocks. I look at each one, admire it's unique beauty, and see what my brother saw - the glory of nature. Just holding one for awhile or admiring one sitting on my desk or windowsill makes me feel good.
I'm sure it was his inherit artist's eye that could see what others couldn't; their color and style, subtleties that evolved over thousands of years in each particular piece of stone.

Isn't that what we are - subtle yet brilliant pieces of nature's glory? With all our flaws, isn't there still beauty? When we make mistakes we usually create something unexpected. With cataclysmic geographical or personal events come tangible, hold-in-your-hand miracles.

And that's what personal trauma does. Through traumatic events, we find resources and support from friends we didn't know we had. We find good in what we once saw was evil. We, as members of humankind, turn ugly things into useful lessons. Just like the Earth is constantly in flux, so are we - shifting and changing with the events that shape us.

It is a somber Christmas for me this year. But I can sit and sift through my brother's rocks and remember the joy that he left me for eternity in the spirit of the season; in the spirit of love.

Over My Head

It's that drowning feeling when so many things are coming at your immuno-compromised physical and mental being that you want to shut down, but you don't. You rest. We rest.

Lupus, fibromyalgia, depression, medication side effects, headaches, sore throats, joint pain and brain fog are common among the chronically ill. Doesn't mean we like it. Add cancers, PTSD and new traumatic events and we need to be thrown a lifeline.

I'm grateful that each day someone or something tosses me that lifeline.

Sometimes, it's just a call from a friend or an email or even a Facebook post that can lift me up and make me feel that my head is above water. Or a snuggle from my perceptive dog or a good piece of dark chocolate. Like a duck, my legs are running fast underneath but I am breathing overhead. I look so deceptively calm and peaceful.

As the leaves change their color due to the shortening of days and the coming of winter, I can't help but think of it as a time of shedding. I've had a tremendous loss (my brother) and this was his favorite time of year, particularly in New York's Hudson Valley. I have to shed my dreams of crunching through the leaves with him; of leaf peeping right outside our front doors. I have to shed the protective cloak of my big brother. I have to shed the illusion that he will be back.

When  a life force as strong as my brother's is snuffed out, it's hard to understand life at all. This seems to be my only focus these days as I meander through time, not really present but here nonetheless.

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. 

Little Girl Lost

It is two days since I buried my brother. I feel like the lost little girl I wrote about in my book, DYING TO LIVE: Running backwards through cancer, Lupus and chronic illness. But I'm thinking long and hard about the title's pre-fix: DYING TO LIVE.

Because, I guess as we age, many parts of us die - whether they be our actual loved ones or our dreams or parts of our health, we are dying all the time. I turned 53 on Monday. It's a pretty insignificant age yet it will forevermore be burned into my brain due to my brother's death mere days earlier. And, for me, it brings back the question of why I lived through traumatic and near-fatal illness? Why was I chosen to stay in this Earth school when others I loved were not? Most importantly, however, we must accept that constant rejuvenation, growth and miracles accompany this dying journey. We just have to be willing to see and accept them quietly and with grace, or loudly and with gratitude - or both!

I don't talk about this much and not even in my book, but I had a Guardian Angel while I was critically ill. He visited me sometime during my wreck of an emergency tracheotomy, chemotherapy and never-ending hospitalization and his name was Sid. He was tall, blue-eyed with blond curly hair. He would sit by my side, visible only to me, and speak comforting words of encouragement and share my sorrow. Sometimes he would challenge me when I wanted to give up. His favorite three words when I would cry out: "Why me?" were "Why not you?" Months later when I started driving again, he was in the passenger's seat urging me on even through my eyesight was hazy, my confidence was zero and my muscles were weak.

One day he told me it was time for him to leave and I begged him to stay. But with a smile and wink (like Santa) he was off - back to God, I presume as his job with me was done. I looked for him for months - in real live humans. I was sure I would recognize him instantly and be able to walk up to him and thank him. But, of course, he was not of the physical world and I finally accepted I would not see him again until I rose to Heaven when it was my turn.

I hope my brother, Steve, has met Sid and they will become good friends; unless, of course, Sid is still working missions since I do believe God hands out certain job descriptions once you arrive in Heaven. I wonder what my brother's mission will be? I'm sure part of it will be to delight people with his wit and artistic expression. Perhaps he is already comforting someone else singing in his deep baritone voice, soothing with carefully selected words, or just making some ill child laugh.

According to one angelic website: "Usually, the guardian angels are spontaneously manifesting their support and divinely-protective influence when the human being truly needs them, because the mission they have from God, in respect with our being, is of acting like a sublime Providence..."

I believe, but you don't have to. I believe because of personal experience. Before that, I was a staunch non-believer. It takes a lot of time and argument with yourself and others to accept what is clearly not logical but I learned - slowly - that I actually prefer the illogical at times; especially times like these - times when nothing seems to make sense and I am that little girl lost yet again.

I will heal. The vast hole in my chest will fill in slowly and joy will return, most often when good memories of my brother surface. For now, I stay in sorrow and ache all over. It's just the first of many steps to come.

By Stephen Lyon Crohn 2013

Why Do They Die?

I am at a heartbreaking loss for words but writing is my therapy and my solace.

My dear brother, Stephen Lyon Crohn, age 66, died unexpectedly yesterday. He was an incredible painter, photographer, writer, volunteer for a number of worthy causes yet endured a tremendous set of difficult circumstances in his life that ultimately overwhelmed him. I understand, I think. I already miss his incredible humor and unmatched intelligence (Mensa Member).

I write this through salty tears that have been pouring from my unseeing eyes for hours. It's enough to make me sick of myself but I know I must go through the process. Grief is never easy.

What can I say except goodbye? How can I stumble through these next few days honoring his memory, mourning his loss, and still take one practical step in front of the other? I don't really know.

My brother was, at times, my best friend. Although 14 years older than me, he was ever-present, it seemed, and could always make me laugh and we shared a similar sense of wicked humor.  We were partners in practical jokes and he was wonderful with my children until the dark clouds overcame him sometime at the turn of the 21st century, a milestone for all us baby boomers. Even though I'm on the tail end of the baby boomer curve, we still shared some hippie fun and a common father who was nutty, smart and funny, too.

During my traumatic illness in 1996/97, he was one of the first ones there and tended me, my husband, and my children. It was extremely difficult for him as he was coming off his own wave of losing many friends and loved ones due to the AIDS epidemic.

He earned a bit of his own fame, too, becoming one of the first discovered men who could NOT contract the AIDS virus no matter how many times they hit his blood with the dirty little cells. He volunteered his own living body to science so they could figure out why all his friends were dying and he wasn't. The blood markers of "The Man Who Can't Catch Aids" were used in the first studies to develop treatments to combat AIDS and his appearances on news programs across the world opened a new field of study for many. We even visited his hologram likeness explaining the discovery at EPCOT in Florida.

God, I will miss him. As he aged, he developed physical illnesses that slowed him down considerably. Did he take the best care of himself? No. Did my sister and I urge him over and over again to do so? Of course we did. It didn't help. He died anyway - much too young.

So my brother who knew every Beatles song ever written will join his mother, our father, and partner in Heaven and grace will uplift his aching soul to heal forevermore.

God, I will miss him. I love you, brother.