The Working Title Is…The Ache from a Journey Down Memory Lane

I traveled a million miles in my mind before I even got out of bed this morning, and there were four things that fueled my trip.

In fact, the title of this essay should be “My SUPER GROSS Morning with The Boy in the Plastic Bubble, The Big Sick and Princess Diana,” but that doesn’t flow very well.

Let me break down how my day started. I rolled over when the alarm went off and felt a little itch on my neck. This was not so surprising since my one mid-life crisis move so far has been deciding to grow my hair a little longer. For the first time since I was seven years old, I’m getting used to luscious locks that can almost be pulled into a ponytail. As I went to swipe the hair away, I grasped something in between my thumb and forefinger, and when my eyes finally focused, I saw a squished spider.

SUPER GROSS!

There was a god-forsaken spider on my neck. And I killed it with my bare hand.

Just to review for those of you skimming text quickly; a freakin’ spider was walking over my jugular and now his guts were smeared between my fingers.

Final review: Spider. Neck. Guts. Fingers. Super Gross.

I reacted as any grown woman would have…I screamed bloody murder and jumped out of bed wiping my hand on the carpet at warp speed. (After later review of the crime scene, he must have been pretty tiny because I could barely find any body parts to scoop up. But in the heat of the moment, I was a main character in the sequel to Arachnophobia.)

I continued to react, as any grown woman would have, trying to problem solve while sitting on the floor in the fetal position. I asked Siri, “Where can I get one of those giant plastic bubbles like John Travolta lived in back when I thought he was super good looking?”

I suppose my plan to spider-proof my room should have taken me straight to Amazon Prime rather than Siri. Instead, I spent the next ten minutes reading this twenty-year-old Houston Press article about David Vetter whose life story was the inspiration for the 1976 television drama starring John Travolta. And perhaps the inspiration for a less emotional, albeit hilarious, Seinfeld episode.

The Boy in the Plastic Bubble

The actual story is heartbreaking and could fuel debate on a host of topics related to medical ethics, parenting, savior siblings and HIPAA. What is not up for debate, however, is the fact that John Travolta’s path from Bubble Boy to Tony Manero and ultimately Vinnie Barbarino was the thing of which a young girl’s dreams were made.

As I read about David Vetter’s relationships with his caregivers and his family’s struggle to do the right thing, I was soon lost in reverie. My mind couldn’t help but recall the path our family took seven years ago with an army of caregivers searching to find out what was wrong with my husband and how to bring him to full health.

I make a painful walk down memory lane each year. It begins on Fathers’ Day when I recall being first worried something might be really wrong with my husband and ends in mid-August after the anniversary of his burial. This morning I found myself remembering how lost we felt as we searched for answers. I remembered specific meetings with healthcare professionals and discussions with family and friends who felt as helpless as we did.

And when I considered where we were at this point on Memory Lane, my thoughts turned to The Big Sick.

The Big Sick

If you have not yet seen this movie produced by Judd Apatow and directed by Michael Showalter, go now. Like, right now. You can finish reading this later.

The film is hilarious. I mean really, really funny. But it’s also beautiful and heart-wrenching and thought-provoking. It will have you talking for days about love and cultural tradition and interracial and interfaith relationships. And it will have you thinking about The X-Files and how tiny Holly Hunter is and if you could ever make it as a stand-up comedian.

If you have intimate knowledge of the word thoracentesis, it will make you shiver. If your mind’s eye holds an image of someone you love unconscious in a hospital bed and hooked up to machines, it will take your breath away. And if you’ve ever missed hearing that person’s voice so much that you sat in your car and replayed a voicemail over and over and over again, it will make you weep.

Cue the Royal Family.

Princess Diana

As I wiped a tear with my spider gut-free manicured hand featuring my go-to nail color which also happens to be that of the Royals, my thoughts turned to Princess Diana. This week, I watched the HBO special Diana, Our Mother: Her Life and Legacy.

It is recommended viewing for everyone, especially anyone who stayed up an entire summer night in 1981 dreaming of becoming a princess and wondering, “Who the heck gets married on a Wednesday?” Also recommended viewing for anyone who kept their kids home from school on an April 2011 morning while all wearing tiaras and cutting photos from Brides magazine and pasting them into wedding planning notebooks.

Prince William and Prince Harry shared very similar stories of a mother’s love and very different stories of facing and coping with loss. The documentary is a poignant journey down a painful memory lane.

As I stared at the television, I watched our memory lanes converge a bit. William and Harry were 15 and 12 when their mom died. Our daughters were 14 and 11 respectively, and just weeks away from their next birthdays, when their dad died.

So much of what these boys, now men, had to share resonated with me and echoed feelings my daughters have shared. Most comforting of all were continued feelings of the presence of a parent in your life many years after a far-too-early death and keeping memories alive for people who never even had the chance to meet that parent…people like spouses and children and grandchildren.

In the documentary, Prince William says, “There were times when you look to someone or something for strength, and I very much felt she was there for me.”

There is no doubt in my mind that is true.

As my walk down memory lane continues, happy memories soften the ache. And new memories and new experiences and new paths bring the girls and me such joy, just as Pat would have wanted.

Pat would have turned 50 on Friday. On that day, we will toast him and the positive, joyful, witty, calming influence he had on our lives. And continues to have. Everyday.

Who needs a plastic bubble when you’ve got all that?

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The Working Title Is…When Worlds Collide

I watch a lot of television. Always have.

In fact, on some level of my subconscious, the mere mention of Tuesday night forever translates to Happy Days and Laverne and Shirley.

At overlapping times in my life, I have been deeply in love with both Hardy Boys, Johnny Gage, Tommy Bradford, Chachi, Salami, James at 15 and James at 16.

I can trace my slow path toward maturity by Friday nights with Wonder Woman, Donny and Marie, Bo and Luke Duke, Quincy and, eventually, JR Ewing. You don’t have to be Columbo to deduce that I didn’t get out much.

Now, with the advent of DVR and Netflix and all the amazing shows on TV, it’s astounding that I leave the couch at all. To be honest, on more than one occasion, the lines have blurred between my real life and the lives of my television friends.

I was once in an event cocktail hour conversation with a person who shared news of a somewhat unusual medical diagnosis given to a family member. In the course of the conversation, I asked about a specific treatment option and a barrage of questions met my inquiry. How did I know about that? Did I know someone who had this diagnosis? Did they take that course of treatment despite the documented risks?

I stammered trying to remember how I even knew of this disease. Who has it? Did I just read about it somewhere? My cheeks began to redden as I slowly came to realize…it was in an episode of Grey’s Anatomy.   Using a shrewdness characteristic of LA Law’s Arnie Becker, I quickly extricated myself from that conversation, and our paths have never crossed again.

I am not proud of that story. Even more so, I wish it were the only one of its kind I could tell.

This week, however, I find myself the victim of the collision of my real world and my television world. And it has left me feeling ever more desperate yet strangely comforted.

In the huge inventory of good television, Blue Bloods is consistently at the top of my list.   Believable characters intertwine through thrilling storylines. It honors a life of public service but doesn’t shy away from addressing professional failure and weakness. The same balance is offered in the way the Catholic Church is presented. While some may consider it cheesy, the concept of family is held in highest regard with Sunday dinner being a part of every episode.

The Reagan family likes their coffee, their red wine, their beer and their scotch. And I like them. The only conflicting thing about the show is that I find the dad and both brothers equally attractive. The minute the grandpa or the little boys start looking good, I’ll change the channel.

One storyline in Friday’s episode involved Officer Jamie Reagan crossing paths with a delusional woman diagnosed with schizoaffective disorder. Her loving father shared the girl’s life story that included the death of her mother and his attempt, as caregiver, to find the help she needed. As the hour unfolded, viewers were witness to an overworked and ill-equipped Department of Mental Health and learned of the exorbitant and cost-prohibitive expense of care in a private hospital. Jamie asked his Dad, the police commissioner, to consider setting up an advisory committee of leaders from the John Jay Institute, Paine Whitney, the Department of Health and Human Services and those on the front lines to study how we can do a better job in dealing with the mentally ill.

This episode hit home.

My brother faces each day with mental illness. He successfully maintained a job for much of his life, but as he’s grown older, the approach to his care has shifted sails with each emotional trauma he faced. In the last five years, he’s received four different diagnoses, one of which was the umbrella of schizoaffective disorder. He’s had five hospitalizations and six different psychiatrists. He’s been in support groups twice a week. He’s received care in both the expensive private pay hospitals and those covered by insurance.

I’ve been witness to it all. And I can say, beyond a shadow of doubt, the mental health care system is broken.

Hospitals put up hurdle after hurdle while standing on their HIPAA soapbox, yet don’t hesitate to take detailed patient histories in crowded hallways. The family is rarely considered the unit of care, leaving providers to rely on a patient’s self-reporting of a problem and loved ones feeling helpless and out of the loop. Inpatient psychiatric units exude the aura of prison, and the reflection on the patient feels punitive rather than restorative. In the world of mental health care, providers would often rather refer than treat, and there is no question that in this world, pharmacology is creator, redeemer and king.

The front-page article of Sunday’s New York Times tells the story of a man named George Bell who died alone in a setting that left no question of his battle with mental illness. Some may wonder, “How could this ever happen?” I, sadly, read the story easily visualizing the path George Bell traveled. And for a split second, I found myself actually thinking, “New York needs Jamie Reagan’s Advisory Committee now more than ever.”

Rather than being disheartened by the collision of my real and pretend worlds, I chose to be encouraged that a story so prominently discussing mental illness was not just placed above the fold of the front page of the Sunday New York Times, but filled almost five complete pages of copy.

Step one. Erase the stigma of mental illness by bringing it into the forefront of our conversation.

Step two. Fix the system.

Unfortunately, we can’t count on a TV character to do that for us. Even if his Dad used to be Magnum P.I.

I don’t know if I’ll ever have the strength to take on writing that book; but if someday I do, I just pray it has a happy ending.

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