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

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

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

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. 

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.

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.

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. 

Beautiful Boy

It's done. One oldest son has flown the nest for real. Not college. Not a long trip. His first home - an apartment in a high-rise in New York City. My Beautiful Boy is gone.

I cried all the way home. 

We are an extremely close-knit family, particularly due to my critical illnesses and the many and terrible losses we suffered as a family as dear relatives died way too young. As much as he infuriated, perplexed, confused and irritated me this past year-and-a-half as he settled into his grown-up job and grew into a true man, I can not doubt his character or his faithfulness, or his loyalty. I am in awe of what he has accomplished. He has grown into the man I always wanted him to be, He is kind and wise.

According to The Mayo Clinic, I don't truly have 'empty nest syndrome' because one of my sons is still at home. But I guess the first one being fully cooked and launched can bring up a mess of feelings, too. I'm certainly feeling them.

The Clinic suggests that to cope, you:

• Avoid comparing your child's timetable to your own personal experience. Instead, focus on what you can do to help your child succeed when he or she does leave home. (We are also moving today!)
• Keep in touch. You can continue to be close to your children even when you live apart. Make an effort to maintain regular contact through visits, phone calls, emails, texts or video chats. (We already do that.)
• Seek support. If you're having a difficult time dealing with an empty nest, lean on loved ones and other close contacts for support. Share your feelings. If you feel depressed, consult your doctor or a mental health provider. (Grabbed a friend last night with her young daughter and went to dinner and got ice cream. It felt good to be with them.)
• Stay positive. Thinking about the extra time and energy you might have to devote to your marriage or personal interests after your last child leaves home might help you adapt to this major life change, (I guess I'll have time to write another book!)

Yeah, yeah. Maybe tomorrow. Today I can feel sad and glad and await his return TODAY so we can all go to a graduation party together. The joke's on me. 

Godspeed my son. You are loved. 

Dan and I last year in Murrells Inlet, SC.

Fear

We all know fear in one form or another. Described 'dictionarily' it is: A distressing emotion aroused by impending danger, evil, pain, etc., whether the threat is real or imagined; the feeling or condition of being afraid. So what.

I think I've held life-long fear in my very bones. My near-death experiences from cancer and my daily struggles with Lupus and fibromyalgia and gastroparesis also keep me in a suspended state of never knowing what shoe will drop. In my case, I hope it's a red stilletto in homage and honor of my dear, departed friend and colleague Susan Murphy Milano, a tireless advocate for those abused by partners or spouses and the author of several books including her memoir, Holding My Hand Through Hell.

Fear has its hold on me through anxiety and terror, remnants of full-blown attacks of post traumatic stress disorder (PTSD) resulting from the emergency tracheotomy and the many, many horrific events of my cancer and ongoing tests, surgeries and treatment that continue to this day. Couple that with depression and I'm lucky I make it out of the house some days.

"Make a great day," I used to chirp to my sons as they would leave for elementary or middle school until they told me to shut my trap. I secretly hope they will repeat that to their own offspring one day. If they don't, I'll tell their wives to do it, if I get the chance.

Today, however, I'm really scared. I have loved ones who are facing medical tests and challenges that make me want to run away like my hair is on fire! I can't help but be empathetic yet also terrified. And the PTSD comes roaring back, in nightmares, massive anxiety, tension headaches and an ever-present cloud of uncertainty that rocks my world. I know this is 'fight or flight' syndrome. I may know it but - still - my conscious self can't correct my unconscious thoughts, feelings, and flat out fear.

For the past few days, I've been pissed off at everyone and letting them know. I had to literally check myself at the door last night to make sure I didn't do it again to my own nuclear family. It's not fun to live in fear although I feel as if I've been doing it all my life. I should be used to it, no? Does our crummy childhood or past experiences ever leave us alone?

Never. My upcoming memoir and website will clearly define how adverse childhood experiences do affect adult physical and mental health.

So I'll try my bag of soothing tricks including deep breathing, soft music, comfort foods - the usual. Again, I know what to do but it never gets easier. The 'bricks' are back - those knotted muscles in my shoulders that always seem to be in the up position. Yeah, yeah, there's meditation and yoga, too. Or simple walks with my dog. I know! Stop telling me what to do! I'll figure it out on my own, in my own time, in my own ways.

In the meantime, if you're struggling with fear, please know that you are not alone and many, many others are treading water, too. Cheers!

Feisty

With every attempt at publishing a book comes marketing. While my blog has held a spot for an excerpt for two years now, I've published the same one. Now, I decided to swap it out with a sample Chapter. I hope you will take the time to read and comment on it.

But today's blog is really about being feisty, a trait I believe I inherited  from my father's mother. And that pluck is surely a blessing and a curse. Sometimes I simply go too far; take risks. So let me tell you a little bit about my Granny.

In the late 1800's, my grandmother, Aline Lyon (whether she knew so or not) was slated to marry the soon-to-be-famous Dr. Burrill Crohn. A common practice among wealthy and/or culturally significant families of that era, the Crohns and the Lyons were not indifferent to match-making. Yet Aline was an independent young woman. Instead of marrying Burrill, she chose  to marry a true love outside of the families’ inner circle. This non-Crohn husband drowned at Orchard Beach before their first anniversary, uncannily after a scolding by her own father that he hoped the young husband would die from exactly such a fate since he was so disappointed in their union. As some sort of booby prize, Aline was then awarded Myron (Mike) Crohn as her second husband, and my Granny obeyed and married the Crohn clan's ""Black Sheep" and somehow, with her own brand of verve, held her family together during the Depression.

But my feisty Granny Aline also loved romance, drama or marriage or all three. Post her divorce from Mike after 11 years, she was married twice more to the same man; Joe Popper – a New York City horse and buggy driver. She died while my mother was pregnant with me; thus my being named after her utilizing the “A” from her first name as is Jewish tradition. Aline has always been described to me as a woman of determination, intelligence and great fortitude, as evidenced by this letter she wrote to the New York Times in 1944:

TO THE EDITOR

I am a hospital volunteer worker at one of the hospitals and I am hoping this letter will perhaps wake up some women who idle away their time at card games or teas when they could be doing good work. There is a serious shortage of nurses and the clinics that care for people who cannot afford independent care at home are badly in need of help.

The volunteers do good work and many women could spare a few hours a day to help until this war is over and things return to normal. Won’t women please consider this matter and try to help? It is not only a patriotic duty but an act of human kindness.

Aline Popper

New York, Nov. 15, 1944

Not many women spoke out at the end of World War II. Not many women described 'human kindness' as 'a patriotic duty.' I guess, with her nerve, she was ahead of the curve of women's liberation and wasn't afraid to talk about it. I have other stories of her great courage that I include in my memoir.

So I follow tradition. I'm not afraid to talk about what happened to me within the walls of my childhood home, nor the confines of a hospital during my critical illness. I just want to help, as corny as that sounds. But it is part of my healing as well; and my never-ending quest for learning. It's as easy as starting with your elders and examining the groundwork they laid for your values and morality - even if, in some cases, that means doing the exact opposite of what they did.

Looking back at my Granny, however, I can only hope that I've made her proud as she keeps an eye on the granddaughter she never knew on earth. And thank you, Granny, for your audacity to speak your mind. I'm carrying on with that tradition no matter what the consequences.

My father and I taking a risk at a New Mexico mesa; 1973

Depression

Here it is: The dirty little secret. I suffer from bouts of depression. As described by the National Institute of Mental Health, I am most likely experiencing a minor depression right now; a lackluster feeling of not wanting to do anything or see anyone and an overwhelming sadness that could last up to two weeks. I've been here before and, trust me, I'm not good company.

My work halts. My mood is low. My appetite is poor and my health issues are exacerbated. I actually had an episode of sweating through my pajamas one night this week and fear struck deep. The only other time that happened was when I had Hodgkin's Lymphoma and that was more than 15 years ago. It is a symptom and it also brings back hints of my PTSD from the emergency tracheotomy and its aftermath.

I think, too, I am wary of my 'ologists' month. By January 31st, I will have seen my rheumatologist, my oncologist, and my gastroenterologist and, undoubtedly, will be run through the gamut of testing I hate and the never ending adjustment of medications. Shortly thereafter, I will get my osteoporosis injection (the latest and greatest, or so they say) and continue my blah diet regimen. I have some new concerns and some old concerns. The docs and I will undoubtedly discuss them all.

Oy.

I don't like dealing with my health problems. I like putting them on a shelf and rolling along. But this past week alone, I've spent hours up late at night wondering whether or not to go to the hospital because my stomach is in spasms and pain from the gastroparesis I have lived with for some two years now, the strange night sweat and headaches and overall malaise. It is not pleasant when I have to go to the ER when the pain is at a +12 on a scale of 1 to 10. But that's what I wait for - the +12. I've learned.

For those of us classified as 'sick' or disabled, we don't know which comes first - the physical maladies or the depression; but both always come and there is no schedule. I know that, too.

According to the NIMH:

"People who have depression along with another medical illness tend to have more severe symptoms of both depression and the medical illness, more difficulty adapting to their medical condition, and more medical costs than those who do not have co-existing depression. Treating the depression can also help improve the outcome of treating the co-occurring illness."

I don't think many 'ologists' get this; nor the many specialists we must see individual for each piece of our bodies. There are so few holistic practitioners. Thanks to friend and colleague Susan Murphy Milano, and her courageous fight against Stage IV cancer last year, I've become acquainted with Dr. Dalal Akoury and her AwareMed Center in South Carolina. God, I miss your wisdom, Susan, and I'm definitely going to set up an appointment to meet Dr. Akoury when I'm down south in February. I know Dr. Akoury gets it and, perhaps, (just, perhaps) I might finally have a captain of my ship to guide me. Many have promised, none have succeeded. But it's worth a shot 'cause I ain't givin' up yet.

Lone Mallard