WHAT EVER HAPPENED...? Why This Title

WHY THIS TITLE?

Years ago, after many failed relationships, I had begun writing a book about my messed-up love life. I wrote the stories of all the stuff that had taken place in my life from the early 1990s until when I became too sick to teach (around 2006 or so). One of the many stories I had for that book was when a 1993 boyfriend of mine cheated on me, and because of that, I stopped eating. My family flew me down to Florida to try to help me get better. Grandpa Johnson was particularly concerned and very generous. When I was a child, he had usually given me $5 when we were saying our goodbyes. After this horrible breakup, he slipped a $50 bill into my hand that I didn’t notice until I got on the airplane to fly back to New York.

So, to that cheater and you other men whom I was with during that timeframe, consider yourselves lucky that I had a brain tumor, because that book I was writing was airing your “dirty laundry” for all the world to see (with only slight name changes).

The name of that book was the same as this book. I originally was writing about how I never ended up with the husband, babies, nice house, and cozy life that I long ago planned on having. Those three children I wanted (Rachel, Rebecca, and Jonathan – in THAT order) never happened. I married twice – one ended in divorce, and the second one I had annulled.

Now, mind you, there were a few good men in my life that I had dated. In that original memoir, I wrote nothing about “Catholic Boy Jim,” “Banker Bob,” or “Oregon Greg” (my affectionate nicknames for them) because they were sweet and did not mistreat me. I called Jim that because he was very attached to his church. What he learned there helped me too. I wrote about Jim here earlier. Bob was a nice guy too. He even stored some of my teaching supplies (in his garage) long after we broke up. Another good guy was Greg. I knew him when we both worked for Ulster County BOCES, before he moved to Oregon, that beautiful state. I’ve remained friends with all three of them to this day. So, those three men were NOT written about in my former “tell-all tale.” But, the rest of the men I dated WERE described. Finishing the writing of that embarrassing saga was sidetracked by my brain tumor, you lucky boys.

The day I wrote about here earlier, when I almost missed my first appointment with my editor because I got lost so many times when I had to drive myself, is the day I decided this title would remain. One teenage boy who used his cell phone to help me get back on the correct road to the Orange County [New York] Chamber of Commerce yelled to me as I ran back to my car, “So, what’s your book’s title?”

As I jumped in to speed away I shouted, “What Ever Happened to My White Picket Fence?”

As soon as I drove away, I thought to myself, Janet, that was the title of your book when you were writing about your screwed-up love life. But then, the very next thought was this: Janet, it’s the perfect title still! You wanted one life (teaching forever and a happy family life), and you got another (battling disability and advocating for the brain-injured).

Now, I know that not everyone ends up with the comfy-cozy life they planned on when they were so much younger. Everyone has a story to tell. But, I feel my particular story is unique because you don't see too many middle-aged women recovering from a massive brain tumor with no husband, no children, no grandchildren, and no nearby family members to assist.

Though I've had LOTS of help from friends, my dog, Aiden, church folks, former co-workers, and others, I know that God has orchestrated this all. He had a plan for me, and it wasn't to teach special needs children up until the usual retirement age. He knew that I could write (I was published a few times in educational journals when I was going for my Master’s at SUNY New Paltz. My excellent professor there at that time, Dr. Spencer Salend, asked me to be a co-author with him.)

So, as I was saying, God decided I was done teaching. He had a bigger plan. Little did I know that day in June 2009, when the neurologist told me about the size of my brain tumor, that I would “live to tell the tale” and thus, hopefully provide help to others struggling with this “fooler” diagnosis.

I write “fooler” because, as I learned at one of my helpful support groups, MANY of us with brain injuries can appear completely normal, thus no one around us “sees” what’s actually going on inside of our heads. I believe I am an excellent “fooler” because I talk fast, remember others’ birthdays, arrive on time and so on.… What isn't witnessed by the majority of people, is how HARD I worked to get all of that done correctly and somewhat politely.

I spend hours upon hours planning and orchestrating my day. I have lists everywhere so I can remember the simplest of tasks, as I've written here already. But, just because I look OK, doesn't mean I'm doing just fine.

I find myself to be in many settings where I feel like I'm about to explode due to someone else's rudeness, and so, I talk to God to help me calm down.

I don't know if it's my brain injury or not, but I just witness way too much selfishness everywhere these days. As I was compiling this chapter, a family of four (two parents in their early 40s and their two teenagers) were on a line in a grocery store ahead of me (and also an elderly woman behind me).

I was in a back brace and purchasing one item. The elderly lady had a cane and was purchasing two items. I thought the parents would model for their teenagers how to take care of others. Instead, they placed their MANY items on the conveyor belt even though they saw my brace and her cane.

Wasn't that a teachable moment? Instead, it illustrated one more time how people think of themselves first.

          So, we ALL had to wait so the father's beer could be sold by a manager (vs. the under-21 register girl). My back ached, and the elderly lady looked mighty uncomfortable. In my opinion, those parents modeled selfishness, not kindness. Since I've created a scene in the store once before (as I wrote about in my chapter about the things people get right even when I don’t), I bit my tongue so as not to create another scene. God does “overtime” with me with that tongue of mine!

I don't really know if it's my hyper-vigilance or what, but I'm sad to observe how often others think of themselves first. Also, as I was compiling this chapter, I observed a selfish daughter on Father's Day, of all days. Guess what, daddy's little girl? It's not all about you! I truly pray that our world will improve and more people will put others before themselves. I strongly believe that that's the only way our world will get better.

I do know that I now have a “bigger” everything: my feelings are stronger on all topics; my emotions are displayed much more often than ever before; my reactions to others’ behavior is grandioso; my sensitivity to anything and everything that takes place is over-the-top, sometimes embarrassingly so. This list is just the tip of the iceberg….

And that's why this book had to happen. So many people are experiencing the aftermath of their brain injury but without others in their lives understanding how to: take better care of them more; forgive them more; appreciate their difference more; tolerate their “odd” behavior more; ask how they're doing more; be helpful, just to be kind, more; put the brain-injured person ahead of themselves once in a while more; ask if they need anything, more, and so on….

And remember – no two brain injuries are the same. I actually know people that are offended by me calling myself “brain-injured” when I'm still driving, feeding myself, etc. They think that someone who is not in diapers in a nursing home should not be labeled that. But, guess what?

I may be able to do so much more than others who are also labeled “brain injured,” but I certainly have lost the life I once had when I was completely able to take care of myself physically, financially, emotionally, and behaviorally. As someone stated in one of my support groups, “Brain injury is NOT a competition!” [Exactly!]

And the same is true for many others who, like me, have been labeled “brain-injured” by their doctors, not by themselves. So, instead of treating them badly because they’re higher functioning than the person in your realm who has a more severe brain injury, treat them with kindness because their life is altered permanently also.

The best person who could model for you how to do this is Barbara Sickler. I wrote about her in the chapter “Friends,” but she needs more of a mention right here and now. Though her sister’s traumatic brain injury forced hospitalization and then nursing-home care, which eventually led to an early-in-life death, Barbara treats me with such warmth and love. She sends me cards and notes to cheer me up when she knows I'm experiencing a “rough patch.” We met because of the subject of brain injury. But, we will remain friends forever because she lovingly cares about those of us with all degrees of brain injury.

I've experienced first-hand the opposite of her warmth, and it's very difficult to write about because it's so close to home. But, as always, I've prayed to God to lead me, and I have an overwhelming feeling that this has to be stated: take care of the person who had a tumor, stroke, aneurysm, or any other acquired brain injury just like you would the person who had an accident and hit their head. They all have damage to their brain; it just took place in different ways, and in various severities. The only commonality is the life they once lived is now permanently gone. Those of you who treat others badly because of your own self-centeredness are very difficult to be around for those of us who can't keep up the pace any longer. Cut us some slack. We deserve kindness, not phony friendliness.

         

I need to add that as I was compiling a part of this chapter, I also did this: had three chiropractic appointments for my back that was still in a brace; had a very expensive new mattress delivered so I could help my very sore back; cleaned lots of clutter out of the way so the “mattress men” could get it in the door; tolerated very noisy construction going on for days in the condo attached to mine; had a doctor’s appointment, a dentist's appointment (ugh!), a meeting, a funeral, and regular, everyday stuff like walking my dog, etc. I'm proud that I was still diligent enough to get this book work done! Way to go, Janet!

So, it's time to wrap up this book. My editor told me that it takes the average person four to nine years to write a book. I did it in three.  And – I did it the “slow” way (handwritten) because I’m slower on the computer. Even though I can use it, I'm very slow-moving so I needed a lot of help. And – my brain is not always up to challenges.

I've already been asked to speak about this book at 20 different locations when it comes out. My editor tells me getting so many invitations while still writing is rare. I'm impressed with that myself.

I now take on God's “Plan B” for my life. The white picket fence never happened, but so much other stuff did. And a lot of that was truly good too. My best advice to anyone is to enjoy what you have instead of wallowing in what you don't.

In the spring of 2016, on the last day of a Women’s Bible Study I had participated in at my church, a “bright light” went off when the book we were studying from, Jeremiah – Daring to Hope in an Unstable World, by Melissa Spoelstra, had a passage from the Bible that I realized as soon as I read it, it was going to be put at the end of my book. I started to tear up when it was on this large wall in huge letters as we watched this DVD.

Dear, sweet Ilse touched my arm to ask if I was okay. I said, “Yes – I just figured out how I'm going to end my book.” She smiled because she knew how much I was struggling with how to wrap it up.

Writing this book was the hardest thing I've ever done, and with the life I’ve had, that’s really saying something! But, I persevered and never gave up. As Dory says in the Disney/Pixar film Finding Dory, “I did it!”

To those of you who need to get closer to God for any reason, know that He’s always by your side. The Bible states it better than anyone could. God bless you…here’s that passage:

I cry out, “My splendor is gone!

Everything I had hoped for from the Lord is lost!”

The thought of my suffering and homelessness

is bitter beyond words.

I will never forget this awful time,

as I grieve over my loss.

Yet I still dare to hope

when I remember this:

The faithful love of the Lord never ends!

His mercies never cease.

Great is His faithfulness;

His mercies begin afresh each morning.

Lamentations 3:18-23 NLV

The End

of my book!

The Beginning

                                                                   of the rest of my life....

###

I (Douglas Winslow Cooper) have been excerpting, weekly, material from this almost-final version of the fine book by Janet Johnson Schliff, M.S. Ed., which she wrote over a three-year period with some coaching and editing help from me, through my business, Write Your Book with Me.

Her memoir is now available in paperback and ebook formats from Outskirts Press  and amazon.com: 

What Ever Happened to My White Picket Fence? My Brain Injury from My Massive Brain Tumor

                                              ###

BOOK TALKS AND SIGNINGS

Janet is taking a much-needed respite from her book tour. More talks will be planned in the spring of 2019… she can be contacted at 845.336.7506 (home) or 845.399.1500 (cell).

Janet Johnson Schliff spoke at the Oblong Books Bookstore in Rhinebeck, NY, on Tuesday, February 6 at 6 p.m.

Janet was on WKNY Radio 1490 in Kingston, NY, on Thursday, March 1 at 9:10 a.m. 

Janet spoke at Barnes & Noble in Kingston, NY, on Saturday, March 3 at 1 p.m. 

Janet spoke at the Starr Library in Rhinebeck, NY, on March 6 at 7 p.m. 

Janet spoke at the Golden Notebook Bookstore in Woodstock, NY, on March 17 at 2 p.m.

Janet spoke at the Morton Library in Rhinecliff, NY, on March 28 at 6:30 p.m. 

Janet spoke at RCAL in Kingston, NY, on April 3 at 4 p.m. [They gave her an impromptu book-launch party.]

Janet spoke at the Parkinson's Support Group at the Starr Library in Rhinebeck, NY, on April 4 at 2:30 p.m.

Janet spoke at the Stone Ridge Library in Stone Ridge, NY, on April 27 at 5:30 p.m.

Janet spoke at the Hurley Library in Hurley, NY, on May 4 at 6 p.m.

Janet spoke at the Kingston Library in Kingston, NY, on May 9 at 6 p.m.

Janet spoke at the Staatsburg Library in Staatsburg, NY, on May 14 at 7 p.m.

Janet spoke at the Clinton Community Library in Rhinebeck, NY, on May 31 at 6:30 p.m.

Janet spoke at the Mountain Top Library in Tannersville, NY, on June 9 at noon.

Janet spoke at the Gardiner Library in Gardiner, NY, on June 11 at 7 p.m.

Janet spoke at the Marbletown Community Center in Stone Ridge, NY, on June 20 at 6 p.m.

Janet was interviewed on radio station WTBQ-FM (93.5) on June 29 at 12 p.m.

Janet spoke at the Esopus Library in Port Ewen, NY, on July 13 at 7 p.m.

Janet spoke at the Pine Plains Library in Pine Plains, NY, on July 20 at 6 p.m.

Janet spoke at the Ulster Library in Kingston, NY, on July 23 at 5:30 p.m.

Janet spoke at the Northern Dutchess Bible Church in Red Hook, NY, on August 11 at 1 p.m.

Janet spoke at the Inquiring Minds Bookstore in New Paltz, NY, on September 6 at 7 p.m.

Janet spoke at the Adriance Library in Poughkeepsie, NY, on September 15 at 2:30 p.m.

Janet was interviewed on radio station WRIP-FM (97.9) on September 21 at 8 a.m.

Janet again spoke at the Mountain Top Library in Tannersville, NY, on September 22 at noon.

Janet spoke at the Enchanted Cafe in Red Hook, NY, on September 28 at 7 p.m.

Janet spoke at the Hyde Park Library in Hyde Park, NY, on October 4 at 7 p.m.

Janet participated in an Author Weekend at the Barnes & Noble in Poughkeepsie, NY, on October 14 from 11 a.m. to 3 p.m.

Janet spoke at the Tivoli Library in Tivoli, NY, on October 22 at 5:30 p.m.

Janet’s interview for the TV program Wake Up with Marci on the You Too America Channel aired on Monday, November 5, and Friday, November 9. It can now be found on the Internet.

Janet spoke at the Germantown Library in Germantown, NY, on November 7 at 6:00 p.m.

Janet participated in the Red Hook Middle School's College and Career Cafe in Red Hook, NY,  on December 19 at 10:30 a.m.

Janet will speak at the Stanford Free Library in Stanfordville, NY, on Saturday, March 9 at 10:00 a.m.

Janet will speak at the West Hurley Library in West Hurley, NY, on Saturday, March 23 at 1:00 p.m.

Janet will participate in an Author Talk at the Saugerties Library in Saugerties, NY, on Saturday, April 13 at 1:00 p.m.

Janet will speak at the Moffat Library in Washingtonville, NY, on Saturday, May 11 at 1:00 p.m.

More signings will be coming up. A fine feature about Janet by John DeSantos [845 LIFE] appeared in the Middletown Times Herald-Record on Monday, March 12, as part of Brain Injury Awareness Month. An article about her book was just published in the May 2018 Living Rhinebeck Magazine. An article about her book appeared in the May 14 Daily Freeman of Kingston, NY. and another in the Family Life section of the Poughkeepsie Journal on June 8th. The Millerton News published an article on Thursday, August 2, about her talk at the Pine Plains Library.