Category Archives: Friends

Only I Would Call It “Poop Week”

In May 2012, about a year after I started blogging, I came out of the closet here on FiftyFourAndAHalf.  Out of the water closet that is.  I fessed up.

I posted this:

My life is shitty.

No, no, no.  I can’t say that, they’ll think I’m suicidal.

My life is in the toilet.

Ditto.

Saturday, May 19th is World IBD Day.  World Irritable Bowel Disease Day.

That’s it!

Recently I learned about this, umm, holiday.  It is a very personal one for me.  Way more personal than I want to admit.  But of course it’s not my fault.   I blame my sister, Judy.

You see, some time in the late sixties Judy pasted a picture on the front of the medicine cabinet above the toilet in our one bathroom.

*

Little did I know at whatever tender age I was that that picture would illustrate my life.  Because in 1972, not long after it went up, I found out that I had ulcerative colitis.  An inflammatory bowel disease.  The bloody flux.  I was in and out of the bathroom and the hospital for much of my teens and early 20s.  What a blast!

Long story short, it ended up that I didn’t have colitis!  But we only found that out when a bunch of men (led by Dr. Herbert Hoover) came at me with knives, removed my large intestine and reorganized my plumbing.  That was when they found out that I really had Crohn’s Disease.

Crohn’s Disease, is, well, worse.  Partly because I can’t for the life of me spell it.  But also because it means I still spend way too much time in the bathroom (although I am very well read).  Oh, and it can affect the entire rest of your body.  Trust me when I say it’s nasty, and that there is no cure.  I would be delighted if that were to change in my lifetime.

*****

Fast forward to now, today, December 7, 2016.  Today ends Crohn’s and Colitis Awareness Week.  There will be a Thunderclap of posts, and tweets, blogs, and Facebook postings to call attention to Crohn’s and Colitis — to Irritable Bowel Disease — diseases that are often “invisible.” Because unless a person goes onto the Internet and proclaims that their life is in the toilet, well, nobody knows.  Unless perhaps if they are in the next stall.

In all seriousness, 1.6 million people in the U.S. alone suffer from Crohn’s or colitis.  These diagnoses are life changing — they cramp not just your gut, but your life.  Your life really does revolve around the toilet.

So I have a favor to ask of you guys.

You’ve all been wonderful, supportive friends, who have laughed with me about my poop problems.  I thank you from the bottom of my heart.  Or maybe just from my bottom.

But here is the favor.

I have been working with the Crohn’s and Colitis Foundation of America to get member of the House of Representatives to join the Congressional Crohn’s and Colitis Caucus.  These Representatives will, hopefully, help direct funding into research towards a cure.  To, in fact, get me (and 1,599,999 others) off the pot.

Please send an email to your Congressman/woman (you can find their information here:  http://www.house.gov/representatives/) and ask them to join the Caucus.  In fact, just cut and paste this into the email/form:

PLEASE JOIN THE CONGRESSIONAL CROHN’S & COLITIS CAUCUS!

Led by Representatives Ander Crenshaw (R-FL-4) and Nita Lowey (D-NY-17), the Congressional Crohn’s & Colitis Caucus is a bipartisan group of Members of Congress dedicated to educating their colleagues and the American public on Crohn’s disease and ulcerative colitis. The Caucus works together to raise awareness, support IBD medical research, and protect patient access to care. The Caucus also works to assert the patient perspective in regulatory decision-making, including the development of a biosimilar regulatory pathway. To join or to learn more information, please contact Matthew Moore in Rep. Crenshaw’s office (matthew.moore@mail.house.gov; 202-225-2501), or Dana Miller in Rep. Lowey’s office (dana.miller@mail.house.gov; 202-225-6506).

Thanks.  You guys are the best.

be-idvisible

 

 

 

 

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Filed under ; Don't Make Me Feel Perky Tonigh, A Little Restraint, Perhaps, Adult Traumas, Advice from an Expert Patient, Being an asshole, Childhood Traumas, Chronic Disease, Cool people, Crohn's Disease, Curses!, Friends, Good Deed Doers, Good Works, Health, House of Representatives, Humor, Poop, Poop transplants, Satisfaction, Saving the World, Science, Taking Care of Each Other

Happy Thanksgiving

This year I feel incredibly lucky at Thanksgiving.  Nobody at my feast will have voted for Donald Trump.

Nobody.

And they will all be relatives.

Didn’t I tell you that I’m lucky?  It’s true — I will gladly spend then next two days cooking for them.

But I know that not everybody is as lucky as me.  I feel your pain, I really do.  One of my brothers voted for Trump, as did a nephew and, I’m pretty sure, a great nephew.  But none of them are coming — they don’t usually come so I did not banish them.

It’s hard to talk to folks about this election and why we feel so strongly that the wrong side won.

It’s hard to talk about this election and not place all Trump voters into Hillary’s stupid basket of deplorables.

It’s hard to talk about this election to Trump voters and not slap them upside the head for being stupid, for placing our democracy at risk, for threatening the future of the planet either by a Trump tiff or by his unwillingness to accept that climate change is real and to do something about it.

For those of you who need assistance, I give you this video — with a shout-out to my friend Karen:

 

 

Not that it will change anything.

Happy Thanksgiving to all of you who are celebrating.

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The Antidote to Sarah Palin

I’m feeling guilty.  I made you, my blogging buddies, listen to Sarah Palin’s drunken, rambling endorsement of Donald Trump.

I’m hoping you’ll forgive me if I share this with you.

See?  There is goodness in the world. And it can be found in Washington, DC. at the National Zoo.

It’s easy to avoid Sarah Palin, here in DC.  Because they keep her in the reptile house.

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Melancholy Baby

A lot of my bloggin’ buddies suffer from depression and other emotional challenges.

Like Picasso, I just have the occasional blue period.

We all do.  In my book, it’s not always a bad thing.  And apparently I’m not alone in thinking that it’s OK to be blue from time to time.

In today’s New York Times, there is an interesting article:

The Case for Melancholy

The article discusses the fact that, in today’s life, it seems we are all always expected to be happy.  Cheerful.  Perky.

“Bullshit,” the article states.  Metaphorically, of course.

Whatever happened to experiencing the grace of melancholy, which requires reflection: a sort of mental steeping, like tea? What if all this cheerful advice only makes you feel inadequate?

Yup.

I’m not, and the author is not, talking about clinical depression.  Just the fact that sometimes, quiet sad reflection is a good thing.

We don’t all have to be perky all the time.

Google Image

Google Image

 

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Filed under Adult Traumas, Advice from an Expert Patient, All The News You Need, Being an asshole, Friends, Health, Health and Medicine, Humor, Mental Health, Missing Folks, Picasso's Blue Period, Taking Care of Each Other, The Blues

We Are Not Alone!

Last week, I read Bloggess Jenny Lawson’s new book Furiously Happy.

Image from Amazon.com

Image from Amazon.com

Furiously Happy deals with Jenny’s mental health issues, how she copes with them, and, importantly how they help make her the person she is.  It is truly a gift to folks with anxiety, depression, other mental health issues (and to those who care about them).  It shows them that they’re not alone.

The blurb on the flap sums it up pretty well:

This is a book about embracing everything that makes us who we are – the beautiful and the flawed – and then using it to find joy in fantastic and outrageous ways. Because as Jenny’s mom says, “Maybe ‘crazy’ isn’t so bad after all.” Sometimes crazy is just right.

While Furiously Happy is geared towards folks with mental illness, I came away from the book feeling comforted about my physical illness, Crohn’s Disease.  Because Furiously Happy reminded me that other people — probably everyone, in fact — struggles through life with something.   And that’s why we all — every one of use — need each other. 

Because no matter what each of us is facing, we’re not alone.

Plus, the book is hilarious.  You will rarely enjoy mental illness quite this much.

Oh, and go read her most recent blog post, which had me laughing for hours last night.  It is a compendium of awkward moments sent to the Bloggess via Twitter.

 

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Customer Service

Today, my son Jacob is taking his very first airplane trip alone.  So of course I woke up wondering if John and I had told him everything he needed to know before hand.

It was a very early morning flight, so he’d arranged to stay with a friend near the airport and take a cab from there.  When I woke up, I immediately checked up on him.  Err, in on him.

He was at the airport in plenty of time, and had even found his gate.  But I could feel his eyes rolling from across the miles when I suggested he sit at the gate and not move until they called his flight.

Because once I made the mistake of not doing that …

***

It was March 31, 1997, and my mother had died the day before. John, Jacob and I picked up my sister Beth who lived not far away, and they dropped the two of us off at National Airport, to take our flight south to Florida to help Dad with the funeral arrangements.  To be there with him.  John and Jacob would follow in a few days.

“The Terminal is under construction, so leave yourselves extra time to get to the gate,” John warned us as he said good-bye.

Yes, National Airport’s Terminal A was a complete mess.  There were barricades everywhere, dust, dirt, grime.  The air was thick with it.

We found the US Airways desk conveniently located just outside of an Au Bon Pain.

Google Image

Google Image

We got some drinks and sat down at a table.  I took a seat facing the US Airways desk, with the information about our flight scrolling across the top.

Like every shy person I’ve ever known when they’re with someone they know, Beth began talking and kept on.  She talked about Mom, about being a kid, told stories that I had heard, and ones I hadn’t.  It was really wonderful, just sitting there.  Neither of us wanted to be going to Florida.   Neither of course, wanted to be motherless, either.

I kept looking at my watch, and at the information desk, which kept displaying information about our flight.  I was just about to go and check, when the display began giving information about another flight.

“Grab your stuff, Beth,” I said over my shoulder as I headed to the desk to find out what was going on.  We hadn’t heard any announcement.  Fortunately, Beth was right behind me.

“Ma’m,” I said to one of the two women at the desk, holding out my boarding pass. “What happened to Flight 183 to Ft. Myers?”

“That flight just pulled away from the terminal.”

NO!!!!!! BRING IT BACK!!!” I shouted, with a voice full of all the pain of my loss, “IT’S FOR MY MOTHER’S FUNERAL!!!!”

I began to sob.  Loudly.  In the empty airport terminal, my sobs echoed off the ceiling.

“Lease,” Beth said, starting to console me, “It’ll be OK.”

I got what we call the “sup-sups” — where you can’t stop crying, and you can’t quite breathe either.  I couldn’t stop.

The clerks looked at one another.  One grabbed the phone, the other grabbed my arm and pulled me.

“The gate is down here,” and she ran with me, my sister right behind us.

The gate was, in fact, a long fucking way away.  Miles, it seemed.  WTF?

We got there just as they had clicked the landing tunnel back into place.  They opened the door and we ran down it to the plane.

US Airways had brought the plane back so I could get to my mother’s funeral.

Google

Google

As Beth and I moved down the aisle, I was still trying to catch my breath, still trying to stop crying.

Heads were turning, as the other passengers were trying to figure out just who we were, and why we were important enough to bring the plane back for.  (And now doubt that if we were so damn important, why were we in coach.”

But another problem emerged.  Someone was in my seat.

There were dozens of seats on the plane.  But in my rather frantic state, I wanted my seat.

“There are lots of seats, Lease,” said Beth.  “Here, we can sit here.  Or here.”

But I made the person move.

Beth sat next to me as I shook and wept the whole trip.  “We nearly missed Mom’s funeral,” I said, again and again.

“It’s OK, Lease,” she’d say, shaking her head.  “We made it.”

***

I never got the names of the two US Airways desk clerks who helped us.  I did write an incredibly nice letter to the company, though, giving times and flight numbers in the hopes that they learned how much their kindness meant to me.

I’ve always been amazed that a big company, which no doubt faces things like this every day, would demonstrate such kindness.

But Beth said they just wanted to shut me up.  And you know, she may have been right.

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Restoring Faith

You know, I’m getting pretty cynical.  Folks all across the world are going all Ayn Rand, feeling like folks shouldn’t work together to solve problems.  That every body should fend for themselves.  Or, as my Dad used to say when folks just didn’t give a damn about each other (or didn’t save him the last cookie):  “I’ve got mine, how are you?”

And really, I’m getting kind of discouraged.  Civilization was built because humans figured out that working together gets more done than working individually.  And of course, the “cradle of Civilization” is Greece.

I am not an economist.  I am not a European.  Hell, I don’t really know what’s going on over there, what led to the economic collapse that Greece is experiencing.  I don’t know why the Germans and the French are standing idly by watching it happen with their hands on their hips.  But even I’m smart enough to know that the impact of a collapse of Greece, in both actual and symbolic terms, is not a good idea.

But I just read the coolest article.  Thom Feeney, 29, of London, is a shoe salesman.  And he has set up a GoFundMe site to collect donations to enable Greece to pay its loans.  He said:

All this dithering over Greece is getting boring.  European ministers flexing their muscles and posturing over whether they can help the Greek people or not. Why don’t we the people just sort it instead?”

He has raised more than €500,000 in two days.  The Greeks need €1.6 billion.

(I believe this photo is from Al Jazeera, which reported this story)

It’s amazing what one person can do sometimes. (I believe this photo is from Al Jazeera, which reported this story)

 

Crowdfunding is not the solution to Greece’s problems.  In fact, I don’t think that crowdfunding is the solution to big country-wide or international problems.

But even I, with my belief in strong government, think this is pretty damn cool.

And maybe, just maybe, it is what we need to do more often.

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