Living With Jen: Coping with the Tough Stuff

My first two months as an ostomate; facing the challenge with a sense of humor.

So, it’s been a while – 8 weeks, 5 days, 5 hours, 11 minutes, since I last posted anything. Yes, I have a dang good excuse. No, I am not getting into it now; enough to say there was a major, medical crisis.

Right now, there is something I’m dying (wrong word choice) eager to tell you about.

I gotta tell you about ‘Jen’ – my newest acquaintance, closer to me than anyone or anything has ever been or will ever be. And I say that with mixed feelings.

Living with a life-threatening chronic disease ain’t no sweetbread and ofentimes the fixer-upper is big and ugly and all up in your face – not to be hidden or side-stepped. Then you have to find a way to face it head on while keeping your pride and dignity intact.

The first time I saw Jen she scared the bejeezels outta me – not at all a pleasant meeting. To say she repulsed me would be a gross understatement. I barely acknowledged her presence, turned my head away and did my darndest to un-see what I had seen; to forget that she even existed – as if that were possible.

‘Jen’ my brand-new, strawberry-red stoma.

You see, Jen is my newest body part (for better or for worse, for richer or for poorer and all that stuff); my brand-new, strawberry-red stoma – standing about 25 millimeters tall and 35 millimeters around. Yes, she takes up a lot of real estate on my belly.

Now if you are like I was before this last crisis of mine, the word stoma will probably take you back to high school plant biology: stoma – one of the pores on a leaf that allows plants to breathe. Well, Jen is not that kind of stoma. Let’s get on the same wavelength here.

When the doctors got done snipping the cancer out my gut, they deliberated, then concluded that my best chance for long term survival was not to try to reconnect the two pieces of intestine that were left. Instead they did an ileostomy. That means they poked a hole in the abdominal wall and stuffed the end of the small intestine through to the outside, so digestive waste products would be able to leave my body via that new route. Gross, I know, but what can I say?

Sh*t happens! Whether you want it to or not.

So, Jen must always wear her little baggie (ostomy bag) and guess who gets to clean up????? Why none other than yours truly. Beginning to see why I have such mixed feelings about Jen?

Jen and I

But she is my lifesaver, so I guess I should be grateful . . . and really I am. Dr. Russ warned that she MAY have to stay with me permanently, but, there is always that possibility that one day we may part ways – dare I dream of it.

Anyway, I am earnestly trying to get along with Jen.

For starters, I named her; sort-a figured that if we were to become intimate friends, we should at least be on a first name basis. That would be a logical first step for any long-term relationship. I mean, how can you live with someone 24-7 and don’t know what to call her?

Yes, my stoma is a ‘she’. I am sure of it – the incessant yammering, the constant compulsion to remind me of her presence, the irrepressible need to voice an opinion on just about everything – especially food. She is perpetually grumbling and squawking about what, when and how much I should eat. If only she weren’t so bossy!

She gurgles when I try to sleep on my back but groans when I roll over on my side; gripes when I bend over to tie my shoe laces and balks about the way I wear my seat-belt, not too low, not too high, just the right distance away from her. If only she weren’t such a stickler!

High maintenance? Definitely. And she has no qualms about butting into my private conversations (the busybody!) – just ask my husband, he’d back me on that score.

We go shopping together, Jen and I, but she doesn’t pay for anything (the cheap flibbertigibbet). The truth is, she insists on going shopping with me – as if I can even stop her – and I don’t mean that she just tags along. She dictates what I should buy! I must select loose fitting blouses – nothing that would make her stand out too much as she is very particular about her appearance (I am too). Pants and skirts must have an elasticized waist – nothing to squeeze too tight, her majesty demands comfort. If only she weren’t so fussy!

The anticipated ‘box with a smile.’ Jen’s stuff was not in this one. Probably next time.

Recently, I’ve found myself shopping online for toiletries just for her, and outfits – comfortable and tastefully colorful – apparel that she can lounge around the house in!

I have to admit though, that shopping for Jen has moved me one step closer to accepting her presence in my life. I think I may even smile when the UPS guy drops ‘the box with a smile’ on my doorstep.

We have become pretty close now. I actually made a few outfits for her myself and enjoyed doing it – coordinating outfits for me and my new bosom buddy and possible life-long pal. Sigh.

Jen’s first custom-made outfit

Jen and I have been together almost 2 months now and beginning to have some good days; days when we’re not bickering, and peace reigns for a couple hours at a time.

I keep trying to learn as much as I can about my stoma and the world of living as an ostomate (someone who has a stoma) – not just knowing, but really understanding the ‘how-to’s and the ‘why-not’s; and being able to look past the ‘what-if’s and shouldn’t-I’s.

Scouring the internet, I was relieved to find that my situation would no longer be considered a true anomaly. In the USA alone, there are over 130,000 ostomy surgeries yearly (I couldn’t find stats for Barbados). A huge community is out there sharing similar experiences. There is even an internationally recognized “World Ostomy Day” (first Saturday in October).

I think I am finally past the sentiment (well, almost) that Jen is one of those ‘dirty little secrets’ that must be kept in the closet at all costs. I am growing in appreciation for all she is doing to keep me alive and well. So what if I always have to foot her bill?

For now, I am thankful we are inseparable.

A Healing Touch

When God touches your life, it lets you touch the life of others.

Ever since Adam was a lad, touch had been used for physical, psychological and spiritual healing.

Wall carvings dating back to 3000 BC, show the ancient Egyptians using healing massages.

The power of ‘the royal touch’ was believed to be evidence of God’s high esteem.

Medieval kings and queens of Europe were supposedly able to ‘heal’ their subjects by simply applying ‘The Royal Touch’.

Me – the silent skeptic, never thought much of ‘the laying on of hands’. Ignorance? Lackadaisicalness?(Yes it’s a valid word. I checked). I prefer naiveté – that doesn’t sound quite so callous.

Healing people just by touching them? Pshaw! As far as I was concerned, that claim fell out of the same superstitious bag as Ouija boards, palm reading, and horoscopes.

But had I been more attentive, more open-minded . . .

Jesus, the greatest healer of all times never, ever carried a medicine bag. Yet he healed and continues to heal thousands.

Moved with compassion, Jesus touched their eyes and immediately they regained their sight and followed him. Matthew 20:34.

And how do you know when God has touched your life? The real question should be, how do you not know when God has touched your life?

Let me tell you about one of the times when God literally touched me. And when it happened I didn’t even recognize it for what it truly was.

Feel like hearing a story? Doesn’t matter, I’ll tell it anyway!

Here’s my story:

It is the 3rd day (or is it the 4th) after my second liver transplant – the first transplant was six days before the second. In The Surgical Intensive Care Unit, where days and nights do not exist and white-clad doctors prowl in the dimness beyond my domain (I mean the curtains of my cubicle and yeah, it all felt pretty creepy sometimes), I mark the passage of time by my husband’s visits.

Twice? Three times a day? Four maybe? I don’t know. His smile hangs over the left side of my bed (visions of Wonderland’s Cheshire Cat).

“Hi Sunshine! How are you today?” I am so happy to see him. I’m not sure what my face is doing but hope there is a smile there somewhere. We talk – I think, then he is gone. I immediately forget what we talked about. I wish he didn’t have to go, leaving me so alone in a body that doesn’t want to be mine.

I check the glowing, red digits of the clock in the dimness beyond my domain (out in the hallway). The minutes tumble over each other and I try to count how many times they flip through the emptiness before I see my husband again. Am I crying? I don’t think so. (Okay, okay, enough of the doom and gloom already!)

Here comes the good part.

There is a garden in my room! I admit that I may have been flying high on morphine and I don’t know what else, but the garden was for real! I thought. A man sits on a smooth outcrop of stone next to a flowing stream – just like in the children’s bible story books. I have never seen him before but I’m absolutely, positively sure I know him. I sit on his lap and curl my head against his chest and lose myself in the peace and love that envelops me. I don’t feel lonely anymore. I sigh with contentment knowing that He will be there even after my husband must go.

He touched me and reminded me that I was never alone. Nothing else matters.

 

When God touches your life, it lets you touch the lives of others – physically and spiritually.

Maybe because of the simplicity of it, the power and scope of touch has been underplayed, discounted and overlooked; a super-power possessed by all but acknowledged by few.

Here are 10 quotes to encourage you to touch the lives of others.

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Reach out and Touch

Six little-known tidbits about the power of touch.

I’ve learned that every day you should reach out and touch someone. People love a warm hug, or just a friendly pat on the back.

Maya Angelou

“Ms. Brewster” – my name called from the registration area at my back.

I scrambled to get purse, coat, book and travel mug together but there was no need as the registering nurse had stepped from behind the patterned glass partition, flimsy ID bracelet in hand and a smile on her face.

“I’ve got something for you,” she announced – a genuine smile, contagious.

“What’s your birth date Hon?” Southern drawl. “I see you’ve got one coming up” – eyes double-checking my info on the paper wrist-band in her hand.

When she looked up again the smile was still there. “Not allergic to latex, are you?”

I have enough of these paper bracelets to cover a wall.

Carefully taping the bracelet around my extended wrist, she looked me in the face then gently clasped my wrist with both hands. “You have a good rest of the day sweetheart,” she whispered.

That got me.

She had me good.

Immediately Nurse Ruthie became my favorite person in the whole clinic.

I didn’t understand what exactly she had done to make me fall for her; what is was that made me feel so much better about being at the coagulation clinic (for what seemed like the umpteenth visit for the year even though it was only May). I didn’t understand exactly what had happened that made the waiting so much more tolerable.

That was, not until a good friend suggested I write about the power of touch. Then, the silent world of touch began popping up all around me – it had been there all along, voiceless but amazingly powerful. Thank you Av for your wonderful suggestion.

The warmth of Nurse Ruthie’s touch had surprised me. It said, “I understand that you would prefer not to have to be here.” It said, “I care about you.” It said, “you can trust me.” One compassionate touch conveyed all that!

I have to say here that I don’t think I am naturally one of the touchy-feely sorts. Strange enough, I’m okay with the greeting hugs, but not big on the unbidden ones. Nor the random shoulder squeezes or impulsive back rubs – except with very close friends. I actually cringe when strangers get into my personal space – must be something to do with my childhood . . . who knows?

If it didn’t feel good, no one would do it!

But since my friend’s suggestion, I’ve found myself re-living the double handshakes at meetings, visualizing the back slaps on the rugby field, the fearless scrimmages and spontaneous, abandoned hugs; remembering the bro’ hugs at cook-outs, the cheek kisses, and head-pats (for the little ones – you don’t mess with a sista’s hair); reminiscing on the side hugs from students in the hallways and the delightful weight of two generations of children sitting on my lap, playing with my hair and fascinatingly long, skinny fingers.

I also became mindful of my own need for the occasional heart-warming hug of a friend. Don’t hugs just make you feel sooooo good? Not the fleeting cursory ones given with due diligence as a matter of protocol. I mean the ones that make your whole body smile.

So, what’s the big deal with humans and all the touching?

Well you know how there’re some things you just know but don’t know that you know until you are told you know them? I think it’s that way with the need to touch and to be touched. Everybody likes to be touched (by the right person at the right time – of course). If we didn’t, then we wouldn’t do it so much! We are born that way, it seems.

I bet you didn’t know you knew that too.

We are born with the need to touch and to be touched.

 

So I’ll go ahead and ‘fess up.

Sis, I actually like it when you smooth my unruly eyebrows with your finger tips. And Li’l bro, there’s a reassuring safety I feel when you hold my hand, even now that we are way past old enough not to lose each other in the crowd. And to my best-est, best friends, I have not outgrown the pleasure of those wonderfully tight cheek-to-cheek hugs.

I have not outgrown the pleasure of those wonderfully tight cheek-to-cheek hugs.

You see, I didn’t realize that I knew that touching is the most natural way of communicating affection and compassion, or that a touch can calm and reassure you.

What I didn’t know was that it’s not all psychological, there is a whole mess of biology behind it.

Reading about the fascinating world of touch brought me face to face with terms like ‘tactile deprivation‘and ‘skin hunger‘.

For instance, did you know that newborns who are ‘touch deprived’ do not develop normally? Their brains just don’t develop as they should and even if the babies are adequately fed, they fail to thrive and may even die! I certainly didn’t know that.

And did you know that the older we get, the more prone we become to “skin hunger” therefore need more nurturing and touching? That would sort’a explain why my mother used to insist that my siblings and I respectfully tolerate the stifling, lingering hugs that constantly hovered within arms’ length of numerous visiting ‘aunties’.

So here’s ‘the skinny’ about touching. Because it is so effective at signaling safety and trust, touch influences people in ways you would hardly imagine. So this is what ‘they’ say (‘they’ meaning researchers and social scientists).

6 little-known tidbits about the power of touch: 

  • If you touch someone while asking for a favor, they are more likely to be cooperative.
  • waitresses who intentionally touch clients are rated as more friendly and are likely to get bigger tips.
  • the more a sport’s team engages in pre-game physical contact, the greater the team dynamics, the better their chances of winning.
  • salespersons who casually but intentionally touch clients (alert: alert: non-intimidating, non-sexual) are perceived as more trust-worthy and therefore likely to get more sales.
  • students touched (again – alert: alert: non-threatening, platonic touches) by their teacher become more engaged in learning and are more likely to volunteer answers.
  • a pat on the back from a doctor, along with eye contact can boost survival rate of patients with complicated diseases.

Too good to be true? Maybe. Maybe not – but that’s what ‘they’say.

So what am I going to do with this new-found awareness of the power of touch? Let’s wait and see. In the meantime,

 stay in touch!

 

 

Where are the Tears?

12 thoughts to ease your fears about letting teardrops fall.

I never expected a diagnosis of Cancer. I was completely blindsided. That day in February – the day before valentine’s day, Dr. O called. “Is your husband at home with you?”

That could mean only one thing, bad news. “Colon cancer.” A simply stated fact, delivered like a package by the UPS Guy.

Continue reading “Where are the Tears?”

Big Girls (and Boys) Don’t Cry: But You Should

It’s good to cry sometimes. 5 benefits of tears you probably never knew about.

You ever heard of a “Crying Club?” A place where you go to cry. They exist. No fooling. I saw it on the internet.

Now if you’re thinking about someplace like the ‘cry room’ at church or the theatre downtown (those sound-proof, viewing rooms where desperately embarrassed parents hustle off with bawling babies), think again.

These clubs are for adults and not only for high-strung, overly emotional women, or liberated men who’ve proudly tapped into their ‘feminine side’.

Crying Clubs cater to everyone, including businessmen.

Apparently, crying clubs have been around in Japan for years – rui-katsu they’re called, which literally means “tear seeking.” Even some hotels like The Mitsui Garden Yotsuya Hotel has designated rooms just for crying.

In Britain, the first crying club – referred to as a Misery Club, opened back in 2007 – “Loss.” That place was a hit! It said so on the internet.

So what’s all the crying about?

Continue reading “Big Girls (and Boys) Don’t Cry: But You Should”

Live the Life you Love

Get started on realizing your bucket list and making memorable life-stories. 12 prompts to motivate you.

Somebody should tell us, right at the start of our lives, that we are dying. Then we might live life to the limit, every minute of every day. Do it! I say. Whatever you want to do, do it now! There are only so many tomorrows.

Pope Paul VI

So you say you’ve never had a bucket list? You sure? Think back to when you were a child and fill in the blank:

“When I grow up, I want to _____.”

There was the first item on you bucket list. Have you followed through on it yet?

If not, what are you waiting for?

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The Bucket List

“One day, you will wake up and there wouldn’t be anymore time to do the things you’ve always wanted. Do it now.” – Paulo Coelho

A living, breathing alligator right next to me. O-M-G, I could hardly believe it! If I stretched out my hand I could’ve almost touched it – no cage, no protective glass, just the low metal side of the flimsy-looking air-boat we sat in.

Alligator in Florida Everglades

First the eye – large, oily black, sleepy looking; Continue reading “The Bucket List”

Live Life to the Fullest

How long do you have to wait before you begin to enjoy your life and live it to the fullest? 12 affirmations to get you started.

I knew Lindsay would be there when I arrived. She always was; either behind her desk in the reception area or in the consult room helping Dr. J with a procedure. Wherever she was, once those bells on the door jangled, she’d sing out, “I’ll be with you in a moment.”

Over the years Lindsay became a friend and I looked forward to seeing her and catching up. The fact that I was there for another dreaded dental appointment became a distant secondary event.

Enjoy the journey of life for it is as much about how you get where you are going as it is where you go.

There will always be opportunities to take joy in life and with an open mind, we learn to find them.

We have the control to make every day a special day, regardless of whatever else may be going on.

Here are 12 reminders to keep you on the joyful track.

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Living in 3D: A Beginner’s Guide

3 simple practices that could add depth to your life.

I was smiling because the sun was shining on my toes . . . and it felt so good! That’s the truth. There was nothing else to smile about – not that I can remember – only the bright sunlight and the warmth on my toes sticking out from under the blankets.

Maybe I should start at the beginning of the story.

So I was in the critical care unit at the hospital – one of those fish-bowl like cubicles with the curtain partially drawn. Just thirty minutes earlier, Nurse Terrie had piled on a third blanket because my toes were so cold. (Actually, my toes are always cold but I didn’t bother her with that confession. I was just glad for the temporary warmth of another blanket.) Continue reading “Living in 3D: A Beginner’s Guide”

Petals of Love

10 compelling affirmations that inspire a healthy self-love.

When I look in the mirror and the only one there is me, every freckle on my face is where its supposed to be, and I know my creator didn’t make no mistakes on me, my feet, my thighs, my lips, my eyes – I’m loving what I see.

Because I Am A Queen – India Arie.

Loving yourselves is being thankful for what God made. Not loving yourself is an offense to God since we are his most precious creation.

I found that if I looked at it this way, self-love became more of a duty than an indulgence.

Regardless,there will be times when we find ourselves slipping back into old habits and need encouragement – gentle reminders of our duty to love ourselves.

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