Tag Archives: Thanks

Blue Eyes Crying

We all have them.  All five of us were born with Mom and Dad’s Irish blue eyes. They light up with laughter and mischief.  Especially when we were all together.  The last time all seven of us were together, the jokes ricocheted around the room as if shot from an AK-47.

Eva Cassidy.  Bob gave her to me.

It’s one of my first memories.

We headed up Wells Street.  Bob, my eldest brother who is seven years older than me, was riding me on the bar of his bike.  I was about 3, and I sat happily on the bike, watching the baseball cards that were clothes-pinned to the spokes of the front wheel click.

“Lease,” Bob said, “Make sure to keep your feet out of the spokes!”  He didn’t tell me why.  Maybe he should have.

We turned onto Charles Street, next to St. Pat’s School.  Our brother Fred was standing there on the corner.

“It’s one of the funniest things I’ve ever seen,” Fred has said 3,428 times in the intervening years.

It had never occurred to me before Bob mentioned it, but I was suddenly curious as to what would happen if I DID put one of my feet into the spokes. So I just put one little piece of my sneaker in.

“You guys came around the corner, and all of a sudden, the bike just STOPPED! In slow motion, Bob flew over you and the handlebars, and then you, Lease, flew over too, and landed on top of Bob.  The bike followed, and there was a big pile on the corner,” Fred has said, often.  “I laughed and laughed.”

The lesson I took from that experience was that if somebody tells you not to do something, think about why they are saying that.  They might just be right.  It’s possibly one of the more important life lessons I’ve ever learned.

Of course, he taught me many other things.  Big brothers do that.

Another lesson is that slapstick is hilarious.  Unless you’re the one slapped.

As I write this, my big brother Bob lies in hospice in Florida, dying.  His illness and deterioration happened incredibly quickly, and I can’t get there for a few more days for medical reasons.  Fred is trying to get there to be with him.  Bob is unresponsive, incoherent.  Mentally gone.

As Bob is unmarried and has no kids, the decisions for his care have fallen to me, as I was named his medical proxy, and I’ve shared that responsibility with Fred, just as the three of us shared the burden (along with Beth’s sons) when our sister Beth was in Charon’s boat.

Writing comforts me, and you are all my friends, who have read the stories of my childhood, my family. Bob hasn’t appeared in many of my stories, as he was much older.  He doesn’t fit into the narrative too often.  Moreover, as an adult he has been a difficult guy.  Reculsive, introverted, angry. His has been a difficult life.

But he was also a sensitive man, with a big heart that he kept well hidden.  A writer’s eye for detail, and a love of eclectic movies.  Like the brilliant comedy, What We Did On Our Vacation

Appreciate the folks you have who love you, and whom you love, no matter the differences.  No matter how big a pain in the butt they are.  Because you just never know.

 

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Filed under ; Don't Make Me Feel Perky Tonigh, Adult Traumas, Cool people, Crazy family members, Family, Good Deed Doers, Good Works, Growing up, Hanky Alert, Humor, laughter, Love, Nurses are Wonderful, Sad News, Shit, Taking Care of Each Other

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