Wheeling and Healing...

Exhilarating! For a couple of hours, I was a child again forgetting that it's been 20 years since I rode a bike, due to cancer, Lupus, and chronic illness. I found that sweet spot that makes you never want to leave. I was flying!

After being 'forbidden' by my husband and children to get a motorcycle or scooter in my new hometown of Murrells Inlet, South Carolina, I stumbled upon a store that rents and sells electric bikes. Pedego of Myrtle Beach. The shop's wonderfully knowledgeable, friendly and patient owner, Aaron, guided me through the process of trial and error as I visited the store a few times and, finally, a 12-mile ride yesterday through Market Commons, Myrtle Beach State Park, and nature trails I didn't know existed.

I was pedaling and I was exercising and I was using the throttle when my legs got tired - zooming up to 20 miles per hour with the wind rushing through my hair and the glee rising in my heart. We six newbies, on rented bikes, became fast friends as we caught up time and again with each other and our two guides. Up and down, across and through we went calling "Hellos" and "Good mornings" to passerby and residents while ringing our little bells to let people know we were coming.

It was joyful. It was exactly what I was looking for - a reconnect to my soul and spirit from before traumatic illness; a pathway to yet another 'new normal' as I regain opportunity to physically do more in a warmer climate and on flatter topography. Those of us with chronic ailments mourn every time we lose an ability or activity we loved. Riding the Pedego electric bike yesterday may have been simply a joy-ride for some but, for me, it was a very long-awaited triumph. And the fact that it will help contain or correct my various diseases and rely less on medication is huge. HUGE!

I can't say enough about the bike and the shop that have literally handed me back a piece of my life that I thought was lost forever. In fact, according to owner, Aaron, most Pedego enthusiasts are those 55 or older who have some sort of medical issue including but not limited to knee, back or joint problems, excess weight, pulmonary restrictions, and, even, depression. This is not just a bike, it's a lifestyle as Pedego owners gather every week in Aaron's shop to talk, share, learn, and ride.

As I laughed and pumped my fist and shouted out "woo hoo" on my ride, I was so pleased to find the bike able and stable on uneven, rocky, sandy or pocked ground. I soared through the ride and, while I am a bit tired today, my joints hurt less and I slept more soundly. I can't wait until next time!

Chapter IV: Settlement of my Soul

If I try to separate my life into Chapters, I get four:

1. Birth to Young adult
2. Work, Marriage and Children
3. Cancer, Lupus and Chronic Illness
4. Settlement of my Soul

Astonished as I am that I still live and reach goals I never thought possible, it is this Chapter, number four, that is the most intriguing. It's the latter third of my life. All the things and people and places I grasped at and for the past 55 years has led me to  reconciliation of my soul's desire.

It's unusual yet so very, very gratifying. What did I yearn for as a child besides a pony? What actions or activities made my heart sing? How many life lessons have I learned? Where am I going from here?

Moving from my native New York to a southern state where the air is warmer, cleaner and the ocean is nearby nourishes my soul. Having access to nature and wildlife of all kinds - including alligators - continually surprises me. Squirrels' tails are less bushy here since they don't need the warmth from the extra hair so now they really look like rats with tails. Poinsettia plants grow naturally here, a discovery I made by accident as a green plant slowly turned red last winter and I had an "aha" moment. The bark of the many different types of palm trees reminds me of the hardness or softness of people. The storms are just part of the day. 

I have time to explore, gaze, or reason. I get to think uninterrupted. I have found my "final resting place,"  a phrase that disturbs some of my friends and family. After all the hub-bub of a very rich yet difficult life, I get to ask myself: "What did I enjoy doing most when I had the time to do it?" The answers are coming to me slowly but surely and I will do everything in my power to honor my soul's desire. 

While it sounds trite, it is my life and I am blessed to be able to live it regardless of the physical encumbrances I bear and the emotional scars from the tragedies I've endured. You've been reading my "book" for awhile now. Everything stems from my soul and each day gives me another opportunity to give it its due.  

Moving on...

It's been quite awhile since I've written a blog post because as one of my favorite quotes says:

“Sometimes you have to kind of die inside in order to rise from your own ashes and believe in yourself and love yourself to become a new person.” 

― Gerard Way, musician

Oh, how many times have I done this? At least five or six and counting...

These past couple of months have been a time of deep reflection. Regardless of the chronic illness and grief I endure every day, I'm pondering just 'regular' things like the empty nest, buying a home in my beloved Murrells Inlet, South Carolina and adapting to a 'new normal' with health challenges all over again.

I've been referring to the new house as "my final resting place," for it is the last house or residence I will ever purchase and it is the place where I know I will live out the rest of my days. It's a dream come true and one I thought I might never see. Certainly my doctors in the late 1990s all the way up to today didn't think I would still be here...living...dreaming...attempting another huge change in my life even though I'm sick and fraught with loss.

Yes, you can live with chronic illness or disabilities and grief for people who have died before you or all that you have lost due to continual adaptation. Those of us who do must always remain vigilant but we can not let the cancers, the autoimmune disorders, the tragedies and the various odd ailments that strike us out of the blue as a result of chemotherapy or medications or, simply, stress ever, ever derail us. I still reach out and talk to those who are dealing with often fatal disease or a sudden death in the family but it is my choice and it is private. The lessons I learned can't really be taught. Or can they? 

All those wonderful sayings that scroll by us on Facebook or other social media tell us that life is to be lived in moments. Three near death experiences 18 years ago, the loss of many loved ones including my brother to suicide shouldn't have had to teach that to me. But if you still need to learn this lesson, my book DYING TO LIVE: Running backwards through cancer, Lupus and chronic illness may help. A revised version should be published in 2016.

I'm no yogi and I'm no psychic. I'm just a regular person dealing with irregular bumps in the road. And I know I'm not alone.

Throwaway days...

No, I don't mean trash, although getting rid of one item a day to declutter our houses is probably a good idea. I'm talking about those days where those of us with chronic illness have to stay in bed or on the couch or in the recliner and miss out - a throwaway day.

The throwaway day is gone forever and we have many of them; typically after exerting ourselves the day or two before and that includes any events where we might have had fun! It's a constant balancing act.

On my throwaway days, I am usually in bed, in pain, exhausted, and with various symptoms from either my Lupus, Sjrogens, gastroparesis, fibromyalgia, or all of them. Pick a poison for there is no rationale. Could I have a virus? Sure. Could I be getting stomach bug? I guess so, but, most likely, it's just one of those days that go down the rabbit hole for no apparent reason except my chronic ailments.

I hate them.

Yeah. I'll say it again. I HATE THEM. But that doesn't make me stop wishing for a better day tomorrow and getting myself up and out again. I'm always optimistic yet cautionary as I move about my days. Monitoring myself is difficult when there are so many things going on 'behind the scenes.' But I do it anyway for I have life to live, people to see, places to go, and so many things I want to do.

I still haven't scheduled the camera test - the one where I fast for nearly 24 hours and then swallow a big pill with a little camera in it to scope out my small intestines. I'm scared. There are a certain percentage of people whose cameras get stuck and have to be removed surgically. With everything that's happened to me, I fear I will be THAT one.

But I will do it. I always do and I'll hope the results give me better answers to manage day-to-day.
Please don't throw away your days if you don't have to. Bank them for me and others with chronic illness. We will gladly take them off your hands.

Why cry?

Why cry? It's normal and healing, right? It releases toxins in the body. It cleanses our soul and releases stress, anxiety, anger and sadness. It's normal.

Perhaps we don't cry enough, being taught that it is a sign of weakness. But we also cry at happy events when our emotions are triggered to new heights. Some of us cry when we laugh long and hard. I know I do and I don't know where it's coming from.

According to an article in Psychology Today crying can be extremely healing with one caveat: If we self-criticize while crying our eyes out, it does no good at all. That's why we all know some people who cry and cry and cry and never get any better. They are telling themselves negative messages like:

"I'm a loser and that's why I didn't get the job."

"My boyfriend left me because I'm fat and stupid."

"I don't deserve to have any friends."

"I'm just too sensitive."

Instead,  the article reminds us, "speak only kind words to yourself" when you're crying such as
 “I’m sorry” and “I’m with you” and “I love you." We don't say these things to make us stop crying we say them to be compassionate to ourselves.

What a concept! Be compassionate to ourselves.

So many of us are empathetic with others, we forget to do the same when we need it. We berate and negate our feelings and stop crying, especially in public.

The scientific community is studying our tears. In a research project completed by Lauren Blysma, a PhD student at the University of South Florida in Tampa, she and her colleagues describe what we should and shouldn't do around someone who is in crying mode.

•  Be aware that if you do nothing, you can make the crier feel worse.
• Try to do something supportive. What that is depends on the situation and how well you know the person, For example, hugging someone you aren't very close with might not be appropriate, while simply listening in an empathetic way would be suitable.
• Don't assume you know how to comfort them. 'The less intimate the relationship, the more it is appropriate to begin by asking how you can help and be supportive.
• Know that criers who tear up in a very large group generally feel more uncomfortable than those who cry in front of one or two people they're familiar with. But even in a large group, the criers welcome support from those they didn't know well.

I've participated in drum circles and find them so empowering and healing. How about we form a circle of tears and just let it all out! We can drum at the same time if we want but it's a different kind of "sweat lodge," don't you think? We expel the bad through good old fashioned crying and it's not as hard to build and bear like a traditional and viable Native American sweat lodge. 

Who's with me?

Tangled webs...

Oh what a tangled web we weave, 

When first we practise to deceive!

Sir Walter Scott, Marmion, Canto vi. Stanza 17.

Scottish author (1771 - 1832) 

Most often mistakenly attributed to William Shakespeare, the above quote is one that makes so much sense in such a lyrical way, I used it so often in my household when I suspected my children were lying that they would yell: "Stop it!" Lies can certainly catch you dead in your tracks. And when a habitual liar becomes older and somewhat forgetful, they can't keep their lies or their truths straight. 

Be honest, we say; then you can never get caught in a lie. But it's easier said than done when 'white lies' are so prevalent and doctors do not want to disappoint their patients. Did I say 'doctors?'

According to an article in The Huffington Post, here are some lies doctors tell their patients:

"I've seen this hundreds of times."

This one may be said by your doctor as they try to not raise their eyebrows or shake their head in dismay at the huge, scary lesion you are presenting in the office. What they're really saying, though, is maybe they've seen this in "How To Stump The Doctor" articles in journals

"This is the best day ever."

You should know that this is standard doctor talk for, "Holy crap. Can one more thing go wrong with this day before I can get out of here?" If you hear [a doctor] say "This is the best day ever," know that [he/she has] plastered on a game face just to make it through the day, people. The best thing to do when you hear this phrase is to just nod understandingly. Seriously.

"Everything's going to be all right."

Now, when [doctors] say this, [they] don't really mean to lie. In fact, in [their] hearts, [they] hope and pray that this is true. [They] want to believe it in [their] core. [They] usually say this after [they] have been the bearer of bad news: a pathology report that reads cancer; an X-ray that shows a problem; an unusual reaction to a medication. [They] believe it when [they] tell you that it's going to be all right. [They] really do. But sometimes [they] have no way of knowing.

"I'll be done here in 20 minutes."

This is the common time frame used by the surgeon in the OR. This lie is spoken to the nurse who hasn't had a break in four hours and wonders how much longer her bladder can wait. It's a lie spoken to the supervising nurse who wonders if she needs to call in the night shift of technicians and nurses so the surgery can be finished safely. This lie is also told to the anesthesiologist who wants to know how much more sedation the patient needs to tolerate the procedure. The truth is: Finishing surgery is like driving in Friday traffic at 5 o'clock. [Surgeons] hope they'll be done in 20 minutes. [They] think [they] might. [They're] telling the Surgery Gods that [they], too, have a full bladder and an empty belly. But [they] are kinda just hoping. And praying.

"I'll send a note to your referring doctor tonight."

This lie is sort of like the one we all tell ourselves, "I'm going to eat more vegetables. Starting now." Instead, [doctors] are so tired and hungry when [they] get home that [they] have a cold bowl of cereal because [they're] too spent to throw a bag of veggies in the microwave. [They] have the best of intentions to send that letter to your doctor. And it will get done eventually. Honest. But give [them] about a week. OK, two.

"This won't hurt a bit."

Oops. Sorry. It does hurt. A little more than "a bit." But if [your doctor] told you it would hurt like hell, would it be any better for you? Doctors don't think so. That's why [they] all keep saying this. What [doctors] should probably say is the real truth: "This won't hurt me a bit."

"You're making progress."

The truth is, maybe you are. And maybe you aren't. What [your doctor] really means is, "Thank goodness you're not backsliding." [Doctors] mean that, despite the disease, despite your continued smoking, despite the serious injury you had, there is a light at the end of the tunnel. [They] can see it, even if you can't. The lie, though, is necessary because [they] thought you'd be out of the tunnel by now.

"My patients need me."

Hmmm. I'll bet you're surprised at this one. It's kinda true. As the article's author, a doctor herself, states: "We need you, dear patients. We need you to remind us of why we all went into medicine in the first place. We need you to remind us of our beloved grandmother, our great uncle, our second grade teacher. We need to be able to love you and show you compassion with all our heart. We need the connection that comes with true healing."*

* * * 

Interesting stuff, no? I had an almost hilarious session with my therapist the other day where she couldn't stop fidgeting and turning her fan on and off and talking fast, etc. Finally, we figured out that she had indulged in her first cup of caffeinated coffee in 25 years and she literally couldn't sit still. She didn't remember what I said. She didn't remember what she said; but because I recognize that she is human and we have a good relationship, she actually made my day. We laughed and joked and I realized how very like me she is - good days, bad days, and all that happens in between. 

What can we learn from this? We need 'keepers,' those doctors or therapists who keep grounded in what is the human condition. We need less lying and more honesty but we can forgive the occasional lie or gaffe if the human doctor before us is in tumult of his/her own. What we can not forgive is a medical practitioner who is patronizing or arrogant and lies just for the sake of it. 

The last thing my longtime doctor said to me before I was diagnosed with Stage 4B Hodgkins Lymphoma and Lupus was: "You're a normal 36-year-old woman. Go live your life."  He lied. He missed the diagnoses. His radar was completely off that day, week, month. And just three weeks later when I died and was brought back to life, he asked to be involved with my care. I told him to go to hell. Some lies are just too big to be forgiven. 

Nowadays I tell all my treating doctors not to tell me what they are going to do to me. For example, if they're going to stick the big needle in my back, just go ahead and do it. I don't need a pre-warning because then I tense up. I wear music headphones when procedures are going on. I don't want to chit chat with the attendings or nurses or anyone - I want to go to my zone out place. In clinical terms, I disassociate. It protects my psyche and I don't have to watch out for any tangled spiderwebs. 

*Credit: Starla Fitch, MD, is a practicing oculoplastic surgeon. Dr. Fitch is also an author, professional speaker, and certified life coach. She has a passion to help those in the medical field suffering from burnout. Her new book, Remedy for Burnout: 7 Prescriptions Doctors Use to Find Meaning in Medicine, is now available.

Lost in space...

"Danger, Will Robinson. Danger!" I wish I had Robot from the sixties television show Lost in Space to warn me when danger was near, like when I'm going to get smacked in the back of the head with yet another medical emergency.

Since I've been a 'professional patient' for 18 years, you would think I could easily recognize warning signs. Nope. It's always like an earthquake; a shattering of what I thought was a body working well.

It's like being lost in space ... surrounded by blackness, grabbing at stars or comets or flying objects that aren't within my reach. I think of George Clooney in Gravity letting himself come loose from the spaceship and slip, sliding away. It's somewhat beautiful yet scary as hell.

Last week I was hospitalized for internal bleeding. The source is as yet unknown and further testing is scheduled. I also found out yesterday that in addition to having Lupus and gastroparesis, I have Sjrogen's Syndrome. I'm still trying to wrap my head around that one.

So while the doctors toss out names of tests, medicines and supplements, I shut down. When family and friends wish me well or offer comfort, I shut down. I can no longer hide my disappointment in my ongoing poor health. I was once vital. Now I am idle.

Chronic illness is a creepy, crawly thing that should come with warnings all over it yet there is still so much we do not know, particularly about autoimmune disease. To read that Sjrogen's is tied to lymphoma made me gasp, Of course I suffered the stage 4B cancer years before I found out I have Sjrogen's but there it is - in black and white for me to comprehend

Today, I just can't. Call it a pity party or whatever you choose. I feel badly for myself and angry at my body. Floating off in outer space looks pretty good right now.

Whatchoo talkin' about?

Fifteen years after The Adverse Childhood Experiences (ACE) Study was first published revealing that childhood maltreatment can lead to adult physical illness, it is still being knocked around as if it may not hold water. 

This flies in the face of the evidence most recently presented by What Shapes Health? a National Public Radio (NPR) series that explores social and environmental factors that affect health throughout life. The NPR series is inspired, in part, by findings in a poll released on March 2, 2015 by NPR, the Robert Wood Johnson Foundation and the Harvard T.H. Chan School of Public Health.

In NPR's article, Can Family Secrets Make You Sick? Megan Gunnar, a developmental psychologist at the University of Minnesota who, for more than 30 years, has been studying the ways children respond to stressful experiences says: "This is how nature protects us." We all become adapted to living in "the kinds of environments we're born into." Thus, she adds, (stressful or traumatic events) "reshape the biology of the child"

And if you have scary, traumatic experiences when you're small, Gunnar says, your stress response system may, in some cases, be programmed to overreact, influencing the way your mind and body work together. Research in animals and people suggests that the part of the mind that scientists call "executive function" — thought, judgment, self-control — seems to be most affected, she says.

"I thought that people would flock to this information, and be knocking on our doors, saying, 'Tell us more. We want to use it.' And the initial reaction was really — silence," says Dr. Rob Anda, epidemiologist and co-developer of the ACE study.  

"Just the sheer scale of the suffering — it was really disturbing to me," Anda remembers. "I actually remember being in my study and I wept."

He wept. I wept when I learned about The ACE Study while researching my book, DYING TO LIVE: Running backwards through cancer, Lupus and chronic illness. There was an 'aha' moment when I took the ACE test. I scored an 8 out of 10 making me extremely likely to develop serious illness as an adult. Ya think? Stage 4B Lymphoma? Lupus? Gastroparesis? Depression? Anxiety? Oh yeah. 

And then came the part where Anda found out what happened to all those people when they grew up: "Very dramatic increases in pretty much every one of the major public health problems that we'd included in the study," he says. Cancer, addiction, diabetes and stroke (just to name a few) occurred more often among people with high ACE scores.

Now, not everyone who'd had a rough childhood developed a serious illness, of course. But, according to the findings, adults who had four or more "yeses" to the ACE questions were, in general, twice as likely to have heart disease, compared to people whose ACE score was zero. Women with five or more "yeses" were at least four times as likely to have depression as those with no ACE points.

"Over time, especially when you're young, experiences of neglect and abuse and stress impair those circuits," Gunnar says. "You're less able to tell yourself not to eat the ice cream, or smoke the cigarette, or have that additional drink. You're less capable of regulating your own behavior. And that seems to be terribly important for linking early experiences with later health outcomes."

I'm convinced of the accuracy of the results of these studies. 

I am living proof. 

Please spread the word. 

Joy to the world...

Can we make joy happen? During these snowy, dark, depressing days of winter, can we will it to be? Those of us who are chronically ill and hampered by the weather and its unpredictability (sorry weather forecasters) just seem to drop down, down, down beside each snowflake, next to one another in homes where we can not see.

So we take joy in the 'little things' like playing with the dog, or a television series marathon, music, or a good home-cooked meal. But there is something missing to jolt us up and out of bed; to struggle with the day because we have to take care of ourselves.

• Wake up. Check.
• Feel for aches and pains. Check. 
• Take pre-breakfast meds. Check.
• Make specially-approved breakfast for condition. Check. 
• Look at calendar to see if you have any appointments or conference calls. Check. 
• Sit down at desk to work. Check. 
• Leave desk two or three times to remediate annoying side effects of meds. Check.
• Think about walking through the snow to the gym. Check.  
• Worry about falling on ice like last week. 

... and so on and on until darkness falls and you are tired from the routineness of yet another 'wintry mix' day.

If you have Lupus, fibromyalgia, Raynaud's Disease or any other of the thousands of auto-immune disorders, cold and wet is not your friend. You long for the rays of hot sun and, even, the humidity. Air conditioning just recreates winter for you so in spring and summer, you spend a lot of time outdoors and there is joy in the seasons. It's an easier joy for me to capture.

Researchers write about SAD or Seasonal Affective  Disorder. I wonder if it's a real thing or just something we all go through. Mayo Clinic says: "SAD is a type of depression that's related to changes in seasons.  SAD begins and ends at about the same times every year. If you're like most people with SAD, your symptoms start in the fall and continue into the winter months, sapping your energy and making you feel moody. Less often, SAD causes depression in the spring or early summer."

I don't think I have SAD. I've just got the winter weather blues like a lot of us.

Yet others love the cold, snowy weather! They revel in skiing, sledding and snowmen, They hike through icy and snow-laden woods. I remember those days. I was five-years-old. 

Because he was a New York City firefighter through many winters, my husband suffers frostbite on some of his fingers. I watch as a good part of his hand turns white when he doesn't wear gloves. I can't imagine him covered in water and icicles all those winters ago.

Today, our first responders and Department of Public Works staff do the same, braving all sorts of weather to reach tragedies or traumas. And we say to ourselves: "I'm glad it wasn't me."

I'm blessed. I can work from home and tend to my illnesses and my family. I have nothing to complain about. But I remember traveling to and from work in these awful weather days. Climbing over mountains of snow and cleaning off my car too many times to count. My trusty 1969 VW Bug with a 1973 engine that I owned in the early 1980s could be completely covered in snow but would start up reliably. It had no heat because the floorboards had rotted out, as those of you with old Volkwagen Bugs will recall, but your hands could easily act as windshield wipers if they failed because of how close you were sitting to the windshield.

I miss that car. That car alone was joyful. It's beep was happy. It could also climb through snow like a mountain goat because the engine was in its rear. Go figure that it's today's SUVs that are slipping and sliding all over the place. I also miss cutting a hole in a trash bag and slipping it over my head as a helluva a sled to throw myself down a hill.

If I can recapture those feelings, I can have joy every day no matter the weather or time zone. I just did.

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.

Sick...ick!

Many of us have been ill this winter with colds, the flu, or stomach upset. I, however, have been fighting a complete flare up of gastroparesis - the paralysis of my digestive system. This is not a fun disease. It's maddening!

While I've managed it for nearly six years now with diet, medication for digestive motility, and laxatives (yeah, it ain't pretty), this latest bout came out of the blue - smacked me again in the back side of my head. I never expect it or see warning signs.

None of us with auto-immune disease are clairvoyant; that is, we can never predict when something is going to go awry in our bodies. So we get frustrated and isolated in our pain and distress. We triage ourselves to address the worst ailment first. When I had cancer, that came first and the diagnosis at the same time of Lupus came second even though it caused a lot of complications with my cancer treatment.

"I'm a professional patient," I tell the doctors and nurses in the emergency rooms that I frequent. I tell them what I need (pain meds, please!), what tests need to be run (xrays and/or CT scan), and then I'm given the option to be admitted or not. I usually choose not. This time around, perhaps I should have stayed.

Instead I took the treatments home (didn't work), made numerous calls to my gastroenterologist in New York City (because the local docs say my condition is beyond their area of expertise), adjusted meds and diet, and I am coasting along until invasive testing on Friday the 13th. Harrumph. I'm not superstitious, but really?

I know this is just one more hurdle to hurdle; one more setback from which I will recover. Nevertheless, there is always fear. Chronically ill folks live with fear all their lives - the not knowing is the worst of all. But, somehow, we overcome.

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.

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.

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...

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

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. 

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. 

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