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.

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.

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.

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

Pain, pain go away...

It hurts. I hurt. Where? Everywhere and anywhere. It's in my back, my arms, legs, neck, stomach, head and, even, my butt. I'm whining about Lupus, fibromyalgia, osteporosis, gastroparesis, arthritis, my worsening eyesight and the cold weather that's starting to settle into my bones in New York.

I'm making the doctor rounds, as ordered, and some medications are being removed, others added, dosages changed and tests ordered. *Sigh.* It's a job and it's a frustrating one at that.

Talking to a friend last evening who also has autoimmune disease plus work plus family plus daily life challenges like talking to any darn insurance company (auto, home, health - pick one) or staying on hold for tech support or grocery shopping or actually getting WORK done, I found myself giving her advice that I need to give myself again.

Pick three things. That is, choose - in priority order - what things you are going to master today, this week, this month. For example, I suggested:

1. Health/Self-Care. She's presently in a 'flare' and it's gotten worse due to a huge personal disappointment. Because she was so upset yesterday she canceled her rheumatologist appointment and she needed to address her mental health as well. No good. Health comes first. Reschedule that appointment and talk to a mental health provider. 
2. Family. She has a son who needs to know she's available no matter what shape she's in. I learned that lesson the hard way by getting too wrapped up in my own grief over my brother's suicide this past year that I neglected my kids and one acted out when he felt it was finally safe to do so. 
3. Paid Work. As an advocate for others, like myself, she is always helping people for free but neglects work for which she can be paid. 

And because neither of us can stop it, I added a fourth which is our passion: Advocacy.

My friend champions the causes of those who are trampled on in Family Courts across the United States, mostly parents who lose their children under ridiculous rulings by the departments of child welfare. She does an amazing job. I am trained as a Court Appointed Special Advocate (CASA) for children in foster care and I have become involved in suicide awareness and prevention due to my brother's death last year. I've put the CASA work on hold because that would be my number five. That's too much.

I told her we're good enough as we are; doing what we can, when we can but taking care of ourselves comes first ... and praying doesn't hurt either. I hope she takes my advice. I'm trying to take it, too, because I overextend, over promise, overdo.

Chronic illness should not manage us. We must take back the reins and keep reminding ourselves that it's simply okay to just be.

Picture credit: http://www.princesswarriorlessons.com/

It's Not For Me to Say...

Borrowing the title of a Johnny Mathis love song, I know it's not only up to me to make a final decision on anything in my life - my career, my loves, my challenges, and my tragedies.

All the motivational books or sayings you will read say it is entirely up to you and you alone to forge your path. The rocks thrown down in your way are for you to navigate around or through and reach the other side again and again and again. Oh, phooey.

To me, reality is being patient and allowing the events and decisions that are made around you reveal opportunity for you. Such it is with my book, my health, my husband, my children, my living arrangements and my friends.

For example: The fate of my book is in the hands of several royalty publishers who await my revised manuscript. I will not make the 'yea' or 'nay' decision; they will. But it is me who will decide how to manage the results - puff, puff forward as I select a publisher or take the blow of a 'no' and choose to use a different bat, swing another way, but never give up. It's not for me to say.

Living moment to moment means allowing yourself to just be. The miracle could be just around the corner! Have you heard or read that one? I have and it keeps me going although it did not prevent my brother from committing suicide last August. It's not for me to say.

Yesterday, I traipsed around New York City again and today I feel like gloopy leftover oatmeal. There's my health problems waving 'hello.' Today, although it's only Tuesday, is a day of rest. It's not for me to say. 

My husband and I will be married 30 years this September. I want a ceremony in our Church to renew our vows. He doesn't like doing anything in public. It's not for me to say yet I know a compromise will come to us. 

My sons are both in their twenties and know everything, of course, so I have little or no input into their daily doings. I rejoice when we are all together and enjoy each other's company. When? It's not for me to say.

We live in New York but have a lovely condo in South Carolina. When will we get there permanently? What decisions are left to be made? Time will tell. It's not for me to say.

Just like when I was sick with cancer, I have lost some friends who, I must conclude, couldn't deal with my overwhelming grief these past nine months. Those friends have their reasons and I know new friends will reveal themselves. It happened before and it's not for me to say.

Reading the lengthy feature article in this week's issue of New York Magazine about my brother's ordinary yet extraordinary life, I can only conclude that we all make our way with adversity and triumph. We all struggle and compete and rise to many occasion. Oftentimes, we stumble and get right back up. At other times, like my brother, we choose not to get up again when we feel our work on Earth is done. (NOTE: The article, entitled The Man Who Was Immune to AIDS, but not what came after is not 'clickable' for those who do not subscribe. Later in the week, it will be available for all.)

As the final paragraph of the article says:

"Over time, (Steve's) sisters have provisionally come to see evidence for (a) less tragic view not only in his birthday message to Amy ('enjoy gift') but in the way he was found in the car by the police. With the seat reclined as far as it could go and a CD of Buddhist chants nearby, he'd propped his feet up on the dashboard. He was smiling."

It's not for me to say. I loved him anyway.

Christmas Step-In-Time?

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

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

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

[SPOILER ALERT]

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

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

[END ALERT]

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

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

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

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

Merry Christmas...

Dick Van Dyke in Mary Poppins; 1964

Venus Envy

Ah, vanity thy name is woman (and man). When we are coping with chronic illness we worry about how we look. Yes, it's true. When I was being treated with aggressive chemotherapy for Stage 4B cancer and ended up looking like a bald-headed ogre, I vowed that I wasn't going to die looking like that. Maybe that was one of the reasons I survived - stubborn as I was.

I also had Cushings Syndrome from the vast amount of steroids used to save my life. Pumped up to twice my natural size (ouch, that hurt) with a humped back, I was aghast when I looked in the mirror.

Even today, dealing with Lupus, fibromyalgia and the never-ending affects of chemotherapy, I want to look my best but my clothes must not hurt. They can't be binding or scratchy. No wool sweaters for me because just like the liver or heart our skin is an organ and it gets inflamed just like other parts of my body. Sometimes my bed sheets hurt!

And then there's the worsening eyesight due to medications or my illnesses and never-ending adjustments to my eyeglass prescription. The lenses are quite thick now and will soon get even thicker. Add worry lines due to how I must care for myself each day and, damn, I sure ain't Venus de Milo, the historical statue that represents beauty in many cultures.

According to the statue's story, however, scholars are not sure if beauty was the sculptor's intent and the fact that she was discovered in 100 BC minus her arms shows frailty and flaw - just like us!

I don't like hiding myself away on days I feel awful; when the dark circles under my eyes or my unkempt hair keep me away from others. There was a time when I wore the messy, sick me proudly because, regardless of how I looked, I was alive. But now I am less sure since the years have passed and I am simply aging.

There are virtually no pictures of me when I was at my worst - when, in my most swollen state, my sister said I looked like the Elephant Man and my brother deemed me a Hawaian Princess. (Most of my swelling was from the chest up so my head and shoulders were large.) I still hate pictures of myself because I see the saggy skin on my neck where the tracheotomy was performed, I see the scars and imperfections and I think most of my chronically ill friends do, too.

But our beauty is not dependent on our outward appearances. Thanks to the internet, I regularly communicate with others with crippling and disfiguring auto-immune disorders or disease. And they are quite extraordinarily beautiful, these mostly faceless friends of mine. Their determination and grit during hard times is gorgeous. And if life is like a box of chocolates, as Forrest Gump famously said, we never know what we're going to get from one day to the next.

Venus de Milo, The Louvre, Paris, France

Finding grace...

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

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

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

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

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

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

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.

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 & novelist (1771 - 1832)  

Well, why not? It's nearly Halloween and I want to talk about metaphorically tangled webs. Deception and lies weave pretty nasty webs ... of confusion at best and ruin at worst. 

According to an article in Psychology Today, a 2010 study revealed the following: 

(1) The average number of lies told per day by an individual is 1.65. 

(2) Only about 400 of the sample 1000 participants reported telling a lie in the past 24 hours.

... and that's excluding the politicians, of course. (my words).

We're a bunch of liars and we know it. But why do we lie, cheat, scheme, and scam? In another article found in the online magazine Real Simple, one doctor of philosophy explains it this way:

"The tendency to tell tales is “a very natural human trait,” explains David L. Smith, Ph.D., associate professor of philosophy at the University of New England, in Biddeford, Maine. “It lets you manipulate the way you want to be seen by others.” 

Ah, manipulation. What else could it be? The one of six reasons people lie that struck me most was this one: Lying to Make Oneself Feel Better (click on Real Simple link above for more.)

Some want attention or are feeling lonely and will complain about aches and pains that do not exist. Others simply want to reassure themselves and might tell a self-serving lie (I graduated from ABC University. No, I've never been fired. The check's in the mail.) But, says Jenna McCarthy, the article's author "when people start to believe their self-deceptions, it can snowball, which is especially dangerous."

I'm dealing with a huge snowball right now (not of my making) and it isn't comfortable, pretty, or pleasant. I am the bug trapped in the spider web and I'm trying to get out. It will take time.

Oh time, time, time. If we had unlimited time, all would be possible. I'm just impatient. And that's no lie.

Sane and Able?

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

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

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

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

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

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

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

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

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

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

* * *

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

Back to the Basics!

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

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

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

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

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

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

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

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

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

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

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

How long is long...

It's hard for me to believe that two weeks have passed since my brother died. And I know the five stages of grief as first outlined by Elisabeth Kubler-Ross, M.D. in her book, On Death and Dying, a book that was less a scientific study but more a psychological study. She collected observations from those who were dying and the loved ones surrounding them. The conclusions she drew about "stages" are mere guides; that is, they don't go in order, nor do they proceed graciously. They knock you down and lift you up in no particular order.

For the terminally ill and those hit with traumatic events including the death of a loved one, they are:

Denial — "I feel fine."; "This can't be happening, not to me."
Denial is usually only a temporary defense for the individual. This feeling is generally replaced with heightened awareness of possessions and individuals that will be left behind after death. Denial can be conscious or unconscious refusal to accept facts, information, or the reality of the situation. Denial is a defense mechanism and some people can become locked in this stage.

Anger — "Why me? It's not fair!"; "How can this happen to me?"; '"Who is to blame?"
Once in the second stage, the individual recognizes that denial cannot continue. Because of anger, the person is very difficult to care for due to misplaced feelings of rage and envy. Anger can manifest itself in different ways. People can be angry with themselves, or with others, and especially those who are close to them. It is important to remain detached and nonjudgmental when dealing with a person experiencing anger from grief.

Bargaining — "I'll do anything for a few more years."; "I will give my life savings if..."
The third stage involves the hope that the individual can somehow postpone or delay death. Usually, the negotiation for an extended life is made with a higher power in exchange for a reformed lifestyle. Psychologically, the individual is saying, "I understand I will die, but if I could just do something to buy more time..." People facing less serious trauma can bargain or seek to negotiate a compromise. For example "Can we still be friends?.." when facing a break-up. Bargaining rarely provides a sustainable solution, especially if it's a matter of life or death.

Depression — "I'm so sad, why bother with anything?"; "I'm going to die soon so what's the point?"; "I miss my loved one, why go on?"
During the fourth stage, the dying person begins to understand the certainty of death. Because of this, the individual may become silent, refuse visitors and spend much of the time crying and grieving. This process allows the dying person to disconnect from things of love and affection. It is not recommended to attempt to cheer up an individual who is in this stage. It is an important time for grieving that must be processed. Depression could be referred to as the dress rehearsal for the 'aftermath'. It is a kind of acceptance with emotional attachment. It's natural to feel sadness, regret, fear, and uncertainty when going through this stage. Feeling those emotions shows that the person has begun to accept the situation.

Acceptance — "It's going to be okay."; "I can't fight it, I may as well prepare for it."
In this last stage, individuals begin to come to terms with their mortality, or that of a loved one, or other tragic event. This stage varies according to the person's situation. People dying can enter this stage a long time before the people they leave behind, who must pass through their own individual stages of dealing with the grief.

* * *

So, I sit in this jumble of stages bouncing from one to the other. As I said, Kubler-Ross also extended this model to include those struggling with loss or trauma of any kind. The key is to not get stuck.

I saw my psychiatrist yesterday and actually had to fight with him NOT to give me more medicine. He insisted that I was depressed while I insisted I was grieving and sad but not clinically depressed. According to his 'protocol,' the traumatic event of my brother's death REQUIRED him to put me on more anti-depressant and anti-anxiety medications. I refused. I told him I knew where he was and how to get in touch with him and I would ask for help if I needed it.

In fact, although I am clearly grieving, I have never felt stronger in my life! With my brother gone, I have to prepare my shoulders to carry an even bigger load for my own children and future generations. It will take time...a long time. So what?

Finally, I will quote Kubler-Ross once again because, to me, what she says is absolutely beautiful. I hope you think so, too.

“How do these geese know when to fly to the sun? Who tells them the seasons? How do we, humans, know when it is time to move on? As with the migrant birds, so surely with us, there is a voice within, if only we would listen to it, that tells us so certainly when to go forth into the unknown.”

Elisabeth Kubler-Ross 

Photo from Alliance of Hope

Little Girl Lost

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

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

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

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

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

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

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

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

By Stephen Lyon Crohn 2013

Chronic Tonic?

Ugh. Yesterday I had the displeasure of shelling out another $400 in co-pays for three prescription medications. And that's just for one month! On average, my monthly co-pays are about $600 for the seven total pharmaceutical meds I take, or $7200 a year.

Add the new supplements I'm taking (10) and two compounded medicines and I don't even want to calculate the cost of being chronically ill. But the U.S. National Center for Health Statistics (part of the C.D.C.) does. They explain:

• More than 75% of all health care costs are due to chronic conditions.
• Four of the five most expensive health conditions (based on total health care spending in a given year in the United States) are chronic conditions.
• The top four chronic illnesses are heart disease, cancer, mental disorders, and pulmonary conditions. 
• Cancer is the most expensive and heart disease the second most expensive.
• A 2007 study reported that seven chronic diseases – cancer, diabetes, hypertension, stroke, heart disease, pulmonary conditions, and mental illness – have a total impact on the economy of $1.3 trillion annually. 
• By the year 2023, this number is projected to increase to $4.2 trillion dollars.
• Chronic disease reaches into our homes, our hearts, and our wallets. 

No kidding!

But when they cite the trillions of dollars of impact on our economy, aren't they talking about us? It's the money WE pay that keeps these medical industries in business, particularly the pharmaceutical companies. 

As my readers know, I embarked on a journey of integrative/functional medicine about six months ago. Of course, it started with changes to my diet and continues with therapies and supplements that, according to the Institute for Functional Medicine is "healing-oriented medicine that takes account of the whole person (body, mind, and spirit), including all aspects of lifestyle."

Moreover, "it emphasizes the therapeutic relationship and makes use of all appropriate therapies, both conventional and alternative." It's personalized medicine that seeks to not only discover a diagnosis or diagnoses but also seeks to answer the question: Why does this person have this illness? 

They summarize: "The answer to this question is revealed by discovering the antecedents, triggers, and mediators that underlie symptoms, signs, illness behaviors, and demonstrable pathology. Further, medical genomics can identify the phenotypic expression of disease-related genes and their products, affording another lens through which to view illness. Chronic diseases cut across multiple organ systems, and this calls for a systematic method of viewing each patient."

Well, isn't that what I've been saying in much less clinical terms? The toxic stress of my childhood experience pre-disposed me to develop serious and chronic illness. Finding a solution or combination of solutions to live a quality life is the never-ending challenge. 

So, I'm straddling the bridge right now - still following 'doctor's orders' and taking traditional treatments and participating in never-ending tests yet also incorporating my integrative/functional medical doctor's orders and adding  dietary supplements and lifestyle changes while keenly focusing on what meds I can afford to lose and which new treatments I can afford to keep! 

It's enough to make me go mad! 

But I will persevere and accomplish what seems to be out of my reach; impossible. I'm trying as hard as I can and I know you are, too. Running backwards? It's an apt sub-title to my book. It's one of the hardest things to do every single day. But I'm not quitting. Nope. It's just not an option. 

Feeling GROOVY!

Hello lamp post, whatcha knowing; I think you've got some flowers growing.

Ain't ya got no time for me; boop bee dee boop boop feeling groovy!

It's the very first song I learned on guitar as a young girl in the '60s. I was so excited! I felt part of a revolution generation where everything was going to be wonderful, loving and happy! 

A few weeks ago, I was in an awful Lupus flare and, yes, I was the lamp post - stuck because I was in so much pain. But then a wonderful thing happened - some flowers started growing around me and I've come alive again.

In the past week, I've been blessed with a wonderful, private book launch party, a FREE promotion on Amazon Kindle that has attracted over 150 downloads in just two days, a raffle for 10 of my books on goodreads where 235 readers have entered and added DYING TO LIVE: Running backwards through cancer, Lupus and Chronic illness to their "want to read" lists and I'm taping a local television show in Myrtle Beach, SC today. It is called Your Health is Wealth with Dalal Akoury, M.D. I will be representing the cancer patient's point of view.

Flowers, flowers everywhere!

And those are just the successes I'm having right now. Some of my colleagues and friends who also struggle with chronic illness are in the midst of celebratory events as well. I am as excited for them as I am for me.

Yet, unfortunately, I wait. I wait for the ax to fall; the shoe to drop. I know this time will be fleeting since my ailments are so unpredictable. I'm continuing with the new integrative/functional medicine diet and supplements and find that I am feeling better but I still can't attribute any of it to my overall well-being. Time will tell. It is still too soon. I am hopeful.

And that's the best those of us who are sick can do - be hopeful and helpful to others who are experiencing the same. I try. I wake each day wondering what small steps I can take and in what order I will take them. I know today is a biggie with the television show taping, so tomorrow will be a day of rest. I've learned that much.

So go off today and enjoy that shower if that's all you can do. Do an errand. Visit with a pal. Write a poem. If you can't leave your bed, that's okay, too. Place a vase of beautifully smelling flowers next to your bed. Inhale their scent and know that even though you're the lamp post today, seeds are already being planted for you for tomorrow.

Book launch party at Coastal Wine Boutique, Myrtle Beach, SC

Healing Happens...

Yes, it does. I'm witnessing it with the release of my book among those who have read it and shared their personal stories with me.

Besides being an "inspiration" or an "example of strength and survival," the comments that hit me hardest are those that tell me I have broken through a barrier to one's own healing and they have taken steps (or, simply, one step) towards making positive, guided changes in their life.

This inspires me to continue. This urges me forward with my own constant health care. This is why I wrote the book.

Someone very near and dear to me has made a tremendous breakthrough simply by digesting the words and applying them through elective counseling and therapy. If this was the sole reason for my book's publication, I am more than grateful. I am elated. Others, too, are telling me similar stories; ones that break my heart but are also so uplifting because I know these readers are on their way to healing individual trauma.

Those of us who have been impacted by childhood abuse or maltreatment understand the lifelong effects. And, as I keep repeating, current studies, like The ACE Study, reveal that we are more prone to adult physical illness. We are 'damaged goods' and have to strive to break the mold that was set for us as youngsters. It is never easy to be told by anyone, including a trained professional, that in order to fully heal, we must revisit our past - open up old wounds; remember things we don't want to remember or can't even remember. Dig deeper, they say. And my book is like the back hoe.

I am amazed.

This week I have a private book launch party scheduled in the south. About 40 friends and others are planning to attend. I am overwhelmed with the response and while I learn how to communicate my message verbally as well as by the written word, I am getting excited about replicating this event in New York and other places around the country. I'm also keeping a close eye on not wearing myself out and inducing a flare of my own chronic illnesses.

This is a personal post rather than an educational one. Thank you for the indulgence. Thank you for believing in what I have to say. Thank you for allowing me to live my life among the strongest people I know - those who are always seeking to improve, to change, to heal.

Healing happens.

http://www.butyoudontlooksick.com/

There is a Safe Place for children - in Philadelphia!

Hey PHILADELPHIA! Congratulations!

I am so happy to read about Safe Place: The Center for Child Protection and Health and Cindy Christian, M.D. who won this year's international Ray E. Helfer Award for physicians dedicated to treating and preventing child abuse. The Ray E. Helfer Society's mission is "to help prevent and reduce the harm resulting from child maltreatment, by advancing the work of physicians in the areas of education, clinical care, research, and advocacy."

Dr. Christian of The Children’s Hospital of Philadelphia (CHOP) was recognized this month for developing and then bringing to doctors' offices "an educational program to help 'front line' healthcare providers recognize and respond effectively to child abuse and neglect cases." She also co-edited the third edition of the classic text Child Abuse: Medical Diagnosis and Management and has made significant additions to the knowledge base of child maltreatment prevention.

Moreover, Safe Place is staffed by an interdisciplinary team of physicians, psychologists, social workers and other hospital personnel designed to provide the best care to children and families dealing with child abuse or neglect.

Hooray team! Could we ask for anything more?

Cooperation among health care providers and those who work to protect children in all cases is key to recognizing and eliminating this epidemic in our society. Have no doubt, people, it is epidemic. According to The Children's Wall of Tears founders Jane Lemond Alvarez and Leo Alvarez, 2500 children are killed each month at the hands of parents, caregivers and/or boyfriends and girlfriends of the parents.

And my own research reveals that those who are maltreated or abused as children are pre-disposed biologically and physiologically to adult physical illness. (See The ACE Study), I hate to keep repeating the same thing over and over again, but we all need to stop the cycle at its core - at home and in the courts who return children to their abusers over and over again.

Thank you, Dr. Cindy Christian and Safe Place. Let's see if this model can be copied all over the world!

Flare thee well

It's over. For now. The Lupus flare that had me in its grips for the past two weeks or so seems to have abated. What worked? I don't know.

It's been a couple of months that I've started implementing an integrative and functional medicine regimen including a complete change of diet and the addition of many supplements - slowly. Yet, I still had to turn to corticosteroids to pull me out of the depths of the flare; lessen the intense pain and fatigue and clear the fog from my brain. A failure? I don't think so. It's a combined process.

According to The Mayo Clinic, corticosteroids "mimic the effects of hormones your body produces naturally in your adrenal glands, which sit on top of your kidneys. When prescribed in doses that exceed your body's usual levels, corticosteroids suppress inflammation. This can reduce the signs and symptoms of inflammatory conditions..."

"Corticosteroids also suppress your immune system, which can help control conditions in which your immune system mistakenly attacks its own tissues."

There's no question that corticosteroids used for Lupus and fibromyalgia and the treatment of certain cancers and other illnesses works but they are also UNhealthy for a variety of reasons, including increased risk of osteoporosis, glaucoma, high blood pressure and Cushing's Syndrome if taken for a long period of time and in high doses by mouth and/or intravenously.

I hate them. So does my integrative/functional medical doctor Dalal Akoury, M.D. and she was distressed that it was my chosen course of action but I needed relief - fast - and I knew it would work. I simply haven't been under her care long enough to allow all her prescribed recommendations to work. And because I am in New York and she is in South Carolina, I must see her only on my visits there. I go next week.

But, I'm trying. I'm really trying. And I am seeing improvements. The flare was obviously caused by over-exertion and stress due to moving residences and the launch of my book. Now that I'm out of it, I'm continuing to add in Dr. Akoury's supplements one by one, ensuring that I have no reaction to the first before I start the second, third, fourth or fifth. I can't wait to see her again and discuss my progress.

Immune system disorders. My goodness, there are thousands of them that put our bodies in battle with ourselves. Stay tuned for more health updates! I know they are fascinating (tongue planted firmly in cheek).