The Many Faces of Cancer

Eileen, 27 August 2014, 22 comments
Categories: Side Effects, Treatment
Tags: , ,

Cancer definitely takes a swipe at our self-image, especially if you’ve lost your hair from chemo. Some people take the changes in stride. As one man said: I was bald before chemo so nothing changed! For most of us, it’s a different story.  I can remember being at the grocery store, wearing my hat, when a woman looked in my direction. I was certain she had to gawk at the freakish cancer lady. More likely, she just wanted to see if 60-watt lightbulbs were on the the shelf behind me.

I’ve rounded up some photos to chronicle the journey until we come full circle. I don’t have a lot of cancer photos, but enough for you to get the picture. Sorry about the pun. Truly not intended.

Eileen wedding 8-09

The picture to your right is pre-cancer. Actually, I had cancer then; I just didn’t know it. It was the end of August 2009, only nine months before discovering a lump in my breast. It was also the day of my wedding to the Caregiver. Little did I know what lay in store on several fronts.

Portrait of a Brave Soul

Portrait of a Brave Soul

I started chemotherapy the end of July 2010. In the photo below, I stand outside my oncologist’s office before going in for my first infusion. I had been crying shortly before. I felt so scared and wrung out — and I was just getting started!

 

 

 

 

2010-08-16 Bald Me02

 

 

 

 

 

 

Here I am with my head newly shaved, right after Chemo #2. I had tried to hold on to my hair, but as the clumps started falling, I felt better with it lopped off. You can tell it’s early on in my treatment because I appear relatively healthy, just bald. I got past the trauma of getting chemo and felt confident I could make it through.

 

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Next is me at my eighth and last chemo. Hook me up to a bag of Taxol and I’m happy! Or maybe I smiled because I finally reached the end. I still had radiation ahead, but that was a cake walk compared to chemo, at least for me. Next to me is chemo nurse, Karin, who with her lovely Australian accent often repeated, “Chemo is your friend, chemo is your friend….” I’d think: With friends like chemo, who needs enemies! I’ll never forget my first chemo. I asked Karin if she would do this, that and the other. She looked at me and said, “I see. You’re one of those. Do yourself a favor and forget everything you think you know.” At first I found her tactless, but quickly learned she had a good heart and was an extraordinary nurse. I didn’t have a port. She’d slide the needle into my arm so skillfully, I’d barely feel it. Sorry my eyes are closed but it’s the only chemo photo I have. The fact that I’m awake tells me the needle had just been inserted because five minutes later, I’d pass out and sleep.

Although you can’t see her, another patient sat beside me. She’d always bring her little terrier with her who’d lay on her chest the whole time. I loved having that sweet dog in the chemo room. The dog’s owner, Paula, had mets more than ten years! Someone had gifted me with a stuffed dog that looked exactly like Paula’s dog, so I brought it with me to the chemo room, pulled it out of my bag and said, “Look! I brought my dog too!”Growing Hair 006 cropped

The photo on the right is about 4-5 months of growth. Personally, I’ve never felt comfortable with short hair. It might be a leftover from second grade when my father took me with him to the barber to get my hair trimmed – and the barber gave me a pixie! I cried afterward. So when I went to a follow-up appointment with my surgeon four months post-chemo, I still wore a hat because I was not yet comfortable with my appearance. Dr. S. said in his sweet paternal voice, “Eileen, it’s been four months since you finished chemotherapy. Why are you still wearing a hat?” I whisked the hat off my head, flung it onto his counter and said, “Because I look like shit!” He said, “Ooh-kay. Well, everybody has their style.” Poor guy. He got a live one that day.

One Year After

One Year After

At the one-year mark, I definitely improved, looking better and healthier but still have dark circles and that “been through the wringer” look.

Just two months later, I got a “real” haircut. My hairdresser cut it shorter because the hair in back had been “fried” from chemo. She wanted to get rid of the unhealthy locks. I agreed it was a good idea. Good riddance to all the deep-fried chemo curls. The photo is a parking lot selfie so sorry about the sun rays. I couldn’t help but notice the date on this photo: Early February 2012 and I’m wearing a tank top. Gotta love Southern California weather.

Hair cropped02 03-12

 

 

Me 08-17-12

 

 

Now jump ahead to August 2013 – about the 2-1/2 mark and we’re pretty much back. So glad for better days.

A Life on Hold

Eileen, 19 August 2014, 8 comments
Categories: Healing
Tags: , , ,

Before cancer, I had plans and aspirations, goals and dreams. Dreams don’t usually happen without a “one step in front of the other” effort. Those of you who are writers will be familiar with Anne Lamott’s book, Bird by Bird, which I use as a blueprint not only for writing but for life. The crux of the Bird by Bird analogy is when you’re overwhelmed with the enormity of a project, break it down into single, manageable steps and focus on only one thing at a time. When you’re finished, tackle the next step until you reach your goal.

Like everyone, I had goals I worked toward before my diagnosis, one of which was my writing. I’d sold a number of articles and short stories and had a young adult novel published in 2005. I believed I was on my way, slowly but steadily building my career. I learned that rejections are part of the writing path, but I had acquired enough publications to build confidence.

Then came the cancer diagnosis. Then a screeching halt. Except for journaling my cancer experience, the writing stopped. In fact, most of life as I knew it had stopped. You’d think someone had grabbed the remote that controlled my life, hit the Pause button, and left it on the coffee table, forgotten. Who wants to be stuck in pause?

Except while ordinary life is paused, the extraordinary cancer life begins. After diagnosis, we enter an alternate universe where we partake from a buffet of treatment options. It’s similar to a vacation in that we leave our ordinary life to go to a different place, doing things outside our ordinary experience. Our life back home remains on hold. Others in our ordinary environment continue to participate in that life without us, which means we may return to find things have changed. Of course, the analogy stops there because Cancer Land is no vacation, although you may need a really long one once you’re done, and of course you won’t because you’ve just exhausted all your money and energy. But no matter. You just want to return to life as you once knew it.

If you’re lucky, you can pick up where you left off, but chances are cancer changed you on a profound level and something external will need to change to reflect the enormity of what you’ve been through. You even have a badge of trauma to show for it.

Rebuilding life takes time. Maybe even years. Sometimes there is a purging of that which no longer works with Post-Cancer You. This leaves room for the new. These changes often occur with a choppy, staccato motion. Even when you feel back to some semblance of a normal person, it can be awkward adjusting to new skin.

I’ve been easing back into life, bird by bird. There’s one area where I’ve recently taken a plunge and that’s my writing. This blog has helped me to ease back, like dipping my feet into the shallow section. Now I’ve jumped back in, immersing myself in the waters, even getting my hair wet. And you know what? It feels good. I’m writing a new book. I’m back, but the writing has changed. Not my voice, but my genre. I’m writing about cancer. About illness. I couldn’t have written this during or immediately after treatment. I’ve had time to experience the layers of difficulty in recovering. I’ve had time to process the experience.

Is that time lost? Maybe. It feels like a life on hold, except for the fact that a time-out from creative ventures has its purpose. Writers and other creative types periodically go through dry spells. You feel like you’re never going to get it back. You fear the keyboard or canvas. You’re dried up, good for nothing, done. Or so you think. In truth, you’re re-fueling. You’re gaining new life experience which in turn gives you new material. When a gas tank is on empty, you’ve got to stop and re-fuel, and then the car is good to go. So it is with creative endeavors.

It feels really good to be immersed in a new project. Like waking up. Like coming home. Like I finally grabbed the remote and hit Play.

Ode to the Lost Nodes

The surgeon said he’d take just a few. The sentinel lymph nodes. But one set off the malignant alarm and before I awoke, he took the whole slew. I was glad to be alive, to have the cancer removed. But now?

I miss my nodes. And I want ‘em back.

Twenty-f—kin’-eight. Count ‘em if you can. Except you can’t. They’re gone. Probably strung on a chain as a necklace for the surgeon’s granddaughter. Why else would he take so many? A needless waste.

But 27 were in tip-top condition, until they were sliced, diced and trashed. Why? Well, just in case. If one was malignant, they needed to locate the travelers. Because cancer has a gypsy soul. It wanders. In packs. It uses nodes as a bridge to explore new vistas. I know, I know. But it doesn’t change the fact

I miss my nodes. And I want ‘em back.

Someone in a comforting mood said, “Who needs ‘em? They’re just a bunch of dust collectors.” A congregation of knick-knacks that adorn the credenza of my armpit.

True, but it gets awfully dusty in there. Something needs to catch the debris. I’ve always liked a clean living environment. The same holds true for the living room of my armpit. If I don’t dust my living room, the dust accumulates on my furniture. If there are no lymph nodes to sweep away the debris in my arm, it sits and accumulates until my arm swells in discomfort. For these reasons and more

I miss my nodes. And I want ‘em back.

A cluttered room is not only impractical; it’s unsightly. I’d always thought the saying, “Cleanliness is next to godliness,” was an outdated, archaic adage from the 50s. I’m just glad my mother didn’t spout sugar-coated sayings like that. Not that my mother tolerated a dirty or cluttered room. She’d just said, Clean your room! or Accch, pick up that piece of lint from the carpet or Take out the trash. She didn’t need to justify it as being akin to godliness. At this point, I don’t care about the reasons why. If having nodes is next to godliness, I’m ready to cry out, Adonis! Because without them, I’ve jumped track.

I miss my nodes. And I want ‘em back.

They can keep the malignant one. I’m generous that way. As for the rest? If I didn’t need them, I’d still want them. Their loss brings out my vanity. I don’t mean to brag, but they made me look pretty. I didn’t realize until too late that once upon a time, I had a stunner of a pit, cleanly sculpted and beautifully sloped with just a hint of sexy. My left pit is still that way, a harsh reminder of its ugly step-sister to the right. My right pit now has a cavernous dip that was once plumped out by a complete collection of nodes. Now it’s as a board game missing too many pieces. Or a ring setting that lost its gems. Useless and ugly. Like oysters plucked from their shells, now cracked and damaged. It dips inside a cave, a dark, hollow fright that scares innocent bystanders, especially when I wear tank-tops. I do love my tanks, but I can’t help but wax nostalgic for those squooshy, lumpy little nodes, all shrouded with flesh, quietly doing their job behind the scenes without much ado. It doesn’t sound like much, but when partnered with my pit, they were like Bogie and McCall. Lennon and McCartney. Snow White and the (Twenty-)seven Dwarves. Oh…

I miss my nodes. And I want ‘em back.

I am Not Cancer

Eileen, 23 July 2014, 19 comments
Categories: Healing
Tags: , , , ,

I am not sick. I am Eileen. Eileen is my given name from birth. That label helps people to identify me and all that I am. Incidentally, I had breast cancer, but breast cancer is not me and I am not it. We had a relationship. It didn’t work out. We parted ways. I will never forget breast cancer as it made a permanent impression on my life and left a few scars. I hope our paths never cross again.

I’d been sick for so long and recovering even longer that I’d taken on a sick person’s identity. Eileen the Sick. The One with the Cancer. Has there been a day that’s gone by in the last four years where the word “cancer” didn’t enter my conversation? And if not my conversation, surely my thoughts.

Cancer became part of my identity – a familiar comfortable place I didn’t shed even when health returned. True, health returns slowly, bit by bit, and sometimes one doesn’t notice slipping into the Okay Zone. The residual complaints make Okay hard to recognize, what with all those ambiguous symptoms that hang around like unwanted guests. I blame all of that on cancer, just in case. If I’m not sure about my aches, pains and cognitive blips, I figure it must be cancer’s fault. It’s a convenient catch-all for all my problems, something I appreciated when cancer and I were in a relationship. I suppose I haven’t wanted to part with that perk. Even if it’s not cancer’s fault, I can’t think of a worthier scapegoat. It’s the cancer! I say. I’m exhausted, thanks to cancer! A twinge of pain pounds my temple. Damn cancer!

Cancer is an easy target at which to aim the arrows of anger, fear and blame. Other times, cancer is like a warm blanket to wrap myself in when I wish to hide from a cold, harsh world. Heck, the only thing I haven’t done is bronze and display it on my mantle. Probably because I don’t have a fireplace or mantle, or I might have done that too.

True, cancer is responsible for a lot that’s been and some that remains. No wonder I became habituated to being ill. Fatigue. Headaches. Insomnia. Neuropathy. And on and on it goes. This has been my norm for a long time. When many of my symptoms began to subside, it didn’t register when I slipped into a state of wellness.

On average it takes 66 days to form a new habit, give or take depending on the specific habit. Even at the upper end of the scale at 254 days, most cancer patients treat and continue to feel ill during recovery well beyond 254 days. No wonder being sick becomes ingrained in us. No wonder some of us get so used to it that we don’t see we’re well even when it creeps up on us.

I’ve had many days where I felt great, just to get smacked down after an over-zealous bout of over-activity, as if my body reminded me I’m not allowed to have fun. It put me in my place and reminded me who I really am – a sicko. Because of this, I often refrained from planning things with others. Who knew if I’d be up to it? And we all know fun is no fun when you’re not up to it.

There’s much at stake when you realize you’re no longer sick, the most noble being the threat to our bonds with others who have cancer. The identification and empathy we have with those currently in treatment and those with mets who will never be out of the woods runs deep. Those relationships have become meaningful and we don’t want to let them go, nor should we. But on an unconscious level, sometimes we hold on to the cords that bind, that which brought about the bonds we have with each other.

Sometimes there are fears about getting back into normal life. For me as a now-single person, I had not been the least bit interested in dating again. I’d been too preoccupied with survival – rebuilding my health and healing my wounded psyche. Yet as I’ve healed, I feel myself opening up to that possibility again. Relationships are what people do. That too is part of health. It’s scary to open up after being closed off for so long. I hear people talk about their relationship problems and wonder what planet they’re on. Yet, I’ve had those kinds of problems in the past and even during cancer when I was married to the Caregiver.

The real question is, what planet have I been on? It feels as though I’ve lived in a foreign country for the past few years and have had a difficult time assimilating back into my own culture. Yet, am I really so different? Don’t “regular people” have stuff to deal with? Whether it’s health or family problems or job stress, death of a loved one or loss of a job, these are all human situations that come under the greater umbrella of Challenges. Not one person escapes, even if the scope and intensity vary.

Shedding light on all of this enabled me to make an important shift. It’s not that I no longer need to massage the lymphatic swelling in my right arm. Some of my toes and fingers will always have nerve damage and the scars on my breast will never fade. The difference, though, is I’m not sick anymore. It caught me off-guard when I realized I’m okay. The cancer is in the past. Even if there were a recurrence, I can’t live in fear of something that does not exist today. Today, I am well. It might take 66 days to get used to this, but that’s a habit I’d like to take on.

Shockwaves

Eileen, 06 July 2014, 6 comments
Categories: Emotional Fallout, Healing
Tags: , , ,

Cancer thuds
like rocks hurled deep
Ripples flow

   I’M WOUNDED…
     I’m wounded…
        i’m wounded…

The tale told
A single-note gong
Like shockwaves

   I’M WOUNDED…
     I’m wounded…
        i’m wounded…

Cried until
the shrill sparrow’s call
awakens

a rising
dulcet major chord
That warbles

   i’m okay…
     I’m okay…
        I’M OKAY…

 

Why is healthcare like a writing desk?

While pre-existing conditions are no longer a legal basis to deny health coverage, all is far from being sweet and just in healthcare.

I work in an office where the health plan is so deficient that many of the employees can’t afford to go to the doctor. While we’re insured, the effect is pretty much the same as having no insurance.With a $4,000 deductible and 20% in network after that, a serious illness could do substantial damage, and I’m not talking about your physical health.https://encrypted-tbn0.gstatic.com/images?q=tbn:ANd9GcR0P-mP2uU5Pxv654qOA7mCRC2n1I-UmPA-IGR6qG0Ya84Jy3D92mQ8G1nG

For me personally, I guess I’m okay. Last I’d heard I was NED, but I really wouldn’t know. Other than mammograms, I haven’t been scanned or seen by an oncologist since the day I finished treatment in January 2011. I’m thrilled to have clear mammograms, but those are regional. If anything slipped out into the rest of the body, it remains a mystery.

My GP said, “It’s less than five years. You really should see an oncologist.”

I said, “Why? I was Triple Negative, so I’m not on Tamoxifen. Convince me why I need to see an oncologist.”

She said, “I don’t know why exactly.  I just know you should see one.”

I said, “I’ll go online. I’ll see one.”

Many of us weigh our bank accounts against our physical symptoms. We gamble on how much pain we can stand before we cave and see a doctor. We Google symptoms to attempt self-diagnosis, pop over-the-counter medications, and pep-talk ourselves with the mantra: Nothing’s wrong, I’m okay. We become gamblers who pay with our health because we don’t have enough chips to play the game.

And how many chips do we need exactly? There are no right or wrong answers. No really, I mean that.

Is there any other industry where you purchase a product without knowing how much you’re obligated to pay? Even when the medical staff makes phone calls and manages to come up with a number, it never actually ends up being that number. The people from whom you buy the product don’t even know how much their services cost. No wonder because it’s different for everyone. So many variables. But don’t worry. Just get treated. What’s more important than your health? It’s certainly more important than money – until you get hit with a bill you can’t pay. The stress alone could kill you.

This is why healthcare is not like a writing desk (apologies to Lewis Carroll). If I purchase a writing desk, I will be told clearly how much it costs. I can take it at that price or perhaps  negotiate with the shop owner. Either way, I don’t bring it home until I pay up front or make some arrangement for payment on an amount we both understand and agree to.

Healthcare issues are complex and convoluted. I don’t know the answer but I do know this: something must change when the biggest cause of American bankruptcies is the inability to pay medical bills.  Check out these staggering statistics in this article about medical bankruptcies.

I used to think that U.S. health care was offered as a luxury for those who could afford it and by extension, this was a statement on human value. If you could afford it, or your boss afforded you a decent plan, you were worthy of treatment and your life worth saving. If not, your human worth was devalued and deemed irrelevant by a twisted system.

I’ve re-thought all that recently and have come to a different conclusion.

It’s not really philosophical.

It’s not even personal.

It’s not about you or me.

It’s just greed.

Cancer: A Gift?

Eileen, 14 June 2014, 13 comments
Categories: Healing, Personal Growth
Tags: , ,

Doctors may fix us, but it is we who heal ourselves. That may involve the aid of others, but we are the ones who do the deep work of inner exploration that allows us to do what is needed to heal.

I’ve been adamant that cancer is not a gift, that it’s been a curse that wrought havoc, trauma and diminished capacity, robbing me of health, wellbeing, finances, and social pleasure. It left permanent symptoms and plenty of scars, both physical and emotional. I’ve said before that if cancer is a gift, I’d like to return it please.

Until recently when a strange thing started happening. The strangeness revved up and now I’m almost ashamed to admit, to say this in public, because I know my readers and I read many of your blogs and this is not who you’ve known me to be, but I’ll go ahead and spit it out:

Cancer has been a gift. At least to me.

Please don’t get me wrong. It is not and will never be this:

Pink Gift Box

Whatever it is to me will certainly not be the same for you and wasn’t even that to me six months ago.

It’s just that in some weird yet brilliant way, this hellish trip has given me the impetus, consciousness and empowerment to make changes I’ve always wanted to make on some level. It stripped people, places and things from my life and has set me on a path that allows for continued purging. The imposition of cancer/chemo’s seeming limitations has forced me to look at my life from a different angle and head toward new vistas.

Cancer is a brutal, merciless force but after four years, I’ve gotten to a point where the same power tool that ripped up my whole life is now being used to rebuild in a whole new way.

I apologize for the cryptic nature of this post. Stay tuned, but for now, just know I am grateful.

 

Art Petting

Eileen, 06 June 2014, 9 comments
Categories: Humor
Tags: , , , ,

Houston June 2014 014 I’m back from Houston, Texas. It was my first time in Texas except for driving through a few years back. Having grown up on the East Coast, and now living on the West Coast, I admit that I’ve been influenced by the preconceived notions of others about other parts of the country. You know, that vast part that’s in between. Not that I’m close-minded, of course.

Which is why I discovered that Houston is totally cool. It really is a great city. Despite the humidity and mosquitoes, I found it to be friendly, affordable, with every good thing any major city has to offer.

See the photo of the sign? It’s from Hermann Park in Houston – a truly awesome park. They had sculptures and other art on display … and then this curious sign. No “petting” the art? We had a brief discussion as to what that actually means. Can you touch the art as long as you don’t engage in stroking motions that simulate petting? Can you poke it? Lick it? Hypothetically, of course. None of us wanted to get oral with the art.  But I’ve always had a compulsion to touch art when the guards at museums aren’t looking.  To isolate “petting” leaves wide open a whole cornucopia of touching that’s legal.

Then again, maybe we found the sign’s warning to be curious because we misunderstood. Maybe it was never its intention to prohibit touching with motion. It just occurred to me, yes, right now as I’m typing, that the City of Houston does not want you to get kinky or engage in sexual foreplay with the art. No petting the art! What you do with art displayed in your home is your business, but when you’re in a public park, no second or third base, and definitely not more. Not with the art. Which leads me to yet another question. Can I kiss it?

If any Houstonians, or anyone for that matter, would like to offer an interpretation of the warning, be my guest!

 

The Cancer Card

Eileen, 22 May 2014, 1 comment
Categories: Humor
Tags: ,

I’m going out of town in a couple of days and won’t blog for another two weeks, but wanted to post something before I go. I found an article I wrote right after I finished treatment in January 2011. I’ve posted it in part with a short follow-up story. Since writing it, after watching too many people die from cancer, I hope my humor isn’t in poor taste. If anyone finds it  inappropriate, I offer my humblest apologies.

 THE PERKS OF CANCER

You may ask, what’s so good about cancer?

For all its trouble, cancer does come with benefits, namely, the Cancer Card. It’s a well-known perk among cancer patients, even if the non-sick are too blinded by compassion, or even revulsion, to recognize it in action. No question about it, though, it’s there.

Where is this Card? Well, don’t waste your time perusing through the stacks of hospital packets or medical records. You won’t find it buried there, not even tucked away in the back. But trust me on this one. If you have the misfortune of having cancer and haven’t already discovered the Card, it’s only a matter of time before you unearth this cornucopia of joy. Or if you don’t, that’s really too bad because it’s the only thing going for cancer. With all you’ve been through, do yourself a favor and collect your benefits.

Understand that for some, the card has an expiration date. If you get well, and I hope to God you enter remission and live long, your card will have little use, so to quote Janis Joplin, “Get it while you can.”

In my own experience, it was as if I’d received a packet of coupons that excused me from unwanted engagements, compelled strangers to assist me, even a free short haircut–my hairdresser’s way to transition the soon-to-be-hairless toward the Mr. Magoo Do.

Family and friends didn’t hesitate to tangibly express their love. My then-husband, aka the Caregiver, shopped, cooked, and did laundry. When the nurse had said chemo was my friend, she wasn’t kidding!

Cancer picks up where the Do Not Call List leaves off. One mention of my travels through the “C” tunnel sent telemarketers in the opposite direction. It helped to embellish with, “Please don’t call anymore. I just had chemo and I’m busy side-effecting.” Their tone would suddenly turn soft, soothing, as they’d apologize for making my phone ring. Finally, each phone call ended with a blessing for wellness. Sometimes one person’s misfortune is an opportunity that brings out the best in others. I figured, if I could help others be better people, I was happy to assist. No, really, I didn’t mind.

I finally finished chemo and began radiation, multiplied by 33. Everyday was the same until I reached that magic number that signaled the finish line.

That evening, the Caregiver and I went to dinner to celebrate the completion of treatment. I wore my wig, which made me look normal enough to blend in with the masses. As I stood in line, a woman bumped into me, or maybe I bumped into her. I turned to mumble, “Excuse me,” when she flashed me the Stink Eye. I thought, You can’t give me a dirty look. I’m a card-carrying cancer patient! What’s more, I brought my 2010 Cancer Coupon Book!

Indignant, I mentally flipped through the pages of coupons, searching for the one that allowed me to be clutzy in public and bump into people, after which they’d apologize and bestow a blessing for my well-being. I thought I’d brought plenty of coupons. Did they dislodge from the perforations? Sink to the bottom of my purse? Did my chemo-riddled brain leave the one I needed at home?

And then, there it was. The disclaimer. It was buried in the fine print on the back page. A closer glance revealed information that both jarred and elated simultaneously. I couldn’t use my coupons anymore. Not a single one. They had all expired . . . Thank God, they expired.

***

Post Script: Just so you know, I figured out you can still use the Cancer Card following treatment, but sparingly and for a limited time only.

Several months later, I visited my daughter in New York. She, my son and I stood in line to see a play. First come, first served. Wouldn’t you know it – when they got to us, they had only one seat left. My daughter said to the burly guy at the door, “My mom is visiting from California and she just had cancer. Can’t you get us in?” While my hair was growing back, it was still short, wiry and gray, so I felt more comfortable wearing the cap I often wore while bald. I’m sure the accessory helped. The guy said, “Wait here. I’ll see what I can do.”

He brought a woman out, explained how the cancer lady was visiting from California. She didn’t know what to do because they truly didn’t have more than one seat left. She said, “Are you okay with sitting on the floor?” You bet we were. They put blankets down for us to sit on, right by the first row.

Lessons learned: 1) The card comes with a grace period; and 2) It’s even more effective when someone who loves you uses it on your behalf. But it came with a caveat. Big Burly Man said, “We’ll let you in on one condition. You have to tell the people in California that New Yorkers are the friendliest people in the world.” I gave my word. So Californians? Consider yourself told!

 

Mental Illness: Not a Joke #mhblogday

In honor of Mental Health Blogging Day, I’m going to veer from my usual cancer-related posts and tell you a story that left a deep mark on me.I'm Blogging for Mental Health.

Many years ago, I loved a good and gentle man named David. Beautiful inside and out, he was intelligent, talented and had a good sense of humor. He was also schizophrenic. I didn’t know this latter fact when I met him. He’d been high functioning, perhaps the mental-health version of what remission is to cancer.

David had a few bizarre stories of things that had happened to him, but they weren’t so bizarre that I questioned his sanity. He had a keen intellect and we’d have long, wonderful conversations. We also shared a love of the arts. And he was a kind soul. He always kept granola bars or bags of trail mix in his car to give to homeless people or those who begged. He didn’t know their story, but felt if they were there, they had a need.

As time went on, David began his descent into his own personal hell. The outlandish stories now tipped the edge of Wow into full-fledged paranoid delusion. My heart broke for him and I made the mistake of sharing my heartbreak with a co-worker. Hearing about his delusions made her laugh so hard, you’d have thought I’d just told her the funniest joke. “It’s not funny!” I said. “This man is tortured by his own mind and everyone who loves him suffers, too.” She quickly stifled her laugh, apologized and excused herself.

I was so incensed that anyone could laugh at another’s suffering. It reminded me of when I was in the second grade and a classmate was shamed by a teacher. The entire class laughed. Except me. A sensitive child, I watched in horror as my classmate writhed in public humiliation. As I look back, I realize they were children. Not everyone is capable of feeling empathy, but at least adults should have the good sense to resist turning another’s pain into fodder for their entertainment and amusement.

Those who are mentally ill are victims of torture by their own minds. Those who love them suffer considerable pain as they watch the transformation from who they were to the tortured souls they become.

Imagine if the delusions were true – and happening to you. Imagine that a group of influential people with international connections had reason to kill you. They had their people everywhere and even poisoned the hearts of those you loved. No matter how much you loved your family and friends, you were no longer safe. Not even within the privacy of your home because they had your place bugged. There is nowhere to escape the impending doom of torture and possible death because something you did pissed them off. And now they’re using friends and family to get to you.

Can you imagine living like this, perceiving this to be your reality?

One by one, David distanced himself from his friends until there was only me. And then the interrogation was directed toward me and I knew my days as the last person he trusted were slipping away. I tried to encourage him to get help from a professional, but that only hastened his distrust toward me and the inevitable alienation. I’ll never forget the day when I lost my friend forever. I wept.

I hadn’t seen or heard from David until I got a call four years later. He was dead. A car crash. He’d been speeding on the freeway, trying to evade those he perceived were chasing him. A police officer stopped him and issued a speeding ticket. David tried to explain his perilous situation to the officer, that he was being chased by those who wanted him dead. The officer told him to drive to the closest hospital and check himself in, but left him at that point. Ten minutes after the ticket was written, David exited the freeway. He crashed into a tree. Killed instantly. Just 49 years old.

I cried many tears for David, but one thing gave me comfort. He was finally free from suffering as he cast off the body and mind that sadistically taunted him.

Rest in peace, dear one. I could never forget.

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