NOT WHAT I HAD IN MIND
Master Sergeant Anthony E. Johnston of the 122nd Fighter Wing and his wife Marilyn, at the Fort Wayne Air Force base on Sunday, April 18, 2010. Tony was recognized as Indiana’s Air National Guard First Sergeant of the Year. Brigadier General Goodwin and Command Chief Master Sergeant Newman commented, “He is an amazing MXG leader with a non-stop work ethic-driven to complete each and every mission.” “Johnston’s leadership is recognized and respected across 122nd Fighter Wing.”
Often times, I find myself in a position where the idea for a story presents itself, but I struggle with putting it into the proper perspective. I don’t want it to sound like a sermon, and I don’t want it to sound like an ego trip. I try to remind myself that the best story idea in the world is no good– if no one reads it of course. The two sides of my ego argue over which route to take, and I do – usually unsuccessfully – try to remind myself that it isn’t all about me. So let this one start with this quasi apology, this is a story about me, but it applies to us all.
I was walking into a Veterans of Foreign Wars meeting at 5:30 last night and my wife – who was working – sent me the following text.
“Hey, did you send that insurance paperwork?”
A situation, which has played out hundreds or thousands of times over the past four and a half years, presented itself again, and for a very brief moment – even though I know better – I panicked.
It was May of 2006 and I had less than two weeks to go in my third Iraq War deployment. Try as I may to avoid it, I immersed myself in what has surely over the years killed more than a few fighting men and women. I was involved in a task that required 110% of my attention and I was only running on about five cylinders. In my mind, I was home planting flowers with my wife, and the kids were playing in the yard. The next thing I know, I’m in the hospital tent about 40 miles north of Baghdad and I’m answering questions and wondering what the hell had happened. I knew it wasn’t good, but I had no idea how bad “it” would eventually turn out to be.
Years down the road, the Veterans Administration would finally classify “it” as a Traumatic Brain Injury (TBI) but between then and now, things would get pretty damned murky.
After spending 12 hours waiting for a plane, which eventually came then left without us, then catching another ride that included a one-day layover in Spain and after 20 hours or so on the road, we finally ended up on U.S. soil, in Burlington, Vermont. Their base commander comes on the C-17 cargo plane and welcomes his men and women home, then asks them to take a seat and allow those of us with connecting flights the rest of the way home to hustle to a waiting van which would take us to the airport terminal.
Half an hour later I am sitting on the jet that would take me home.
If you’ve never gone off to war, there is a feeling that you get when you finally make it back home that no one could ever explain to you. You could read every book, watch every movie and talk to as many vets as you want, but unless you’ve experienced it yourself, my words can’t explain it. I arrived at the airport in Fort Wayne and was greeted by family and friends, and it was as emotional experience as I’ve had. It wasn’t my first and it wasn’t my last.
Whoever said “big boys don’t cry,” was a liar, or an idiot.
I woke up the next day and the euphoria of the homecoming was washed away by the headache that I’d had since “it” happened, and prayed, like I had the days before, that today was the day it would go away. But if that morning was one mere step downhill, at times over the next four and a half years I would find myself occasionally a hundred stories below ground.
I was just “there” for a while, and it was, in retrospect, a painfully slow and not-so-dramatic decline in what had been, at least up to that point, a pretty spectacular life.
I was 43 years old, happily married, three incredible kids, nice home in the country, lots of great family and friends, money to do pretty much whatever we wanted, a great job and a budding writing career. Things came easily for me and the struggles were few and far between. I hate to admit it, but it is an integral part of this story. If I had known then, what I know now, I would have taken grandpa’s shotgun to the woods and ended it before it even started. It pains me to say it; in fact it’s hard to even think about it. But it’s a fact of life, played out way more often than it should by those who have carried the baggage of war home and just couldn’t find a place to set that load down, couldn’t find a place to bury it, deal with it, or share it with someone who could have helped. That is a story, which is just a part of this one, but it also deserves its own.
If I wanted to learn a new language, write a story, paint a picture or just do something I’d never done, all I had to do is think about it, and it happened. I never struggled for anything, and life, in retrospect, was easier than even I knew.
So the headache never went away, and the pain from the back injury that came along with the TBI got worse. I tried to deal with that in various ways and had I had the text book of knowledge then that I have now, I would have noticed the big van with “Post Traumatic Stress” (PTS) painted on the side, driving up the lane. I refuse to use the word “disorder” with that term because if you would have seen what I’ve seen and lived what I’d lived, you wouldn’t call it a disorder either. A disorder is something that is not in order, not supposed to be there. What the men and women of this war, and every war before and after this one come home with, is a container full of PTS. For some, it’s a thimble full dumped down the drain the first day home–as they brush their teeth and get back to life, like nothing happened. But for others, it’s a 55-gallon drum strapped to their back, which they will carry around for the rest of their days.
Here’s painful revelation number two; five years ago – before my life altering injury – had I seen you hunched over with that drum of Post Traumatic Stress strapped to your back, choking the life out of you and sloshing out to contaminate those who love you, I would have told you to “Man Up!”
Like so many other things that come with war experiences I do believe the old adage that what doesn’t kill you makes you stronger. But at the same time, what kills you is also what kills you. Period.
I laugh a little now when I think back to that first time I locked my keys in my truck. By then I was 44 and I specifically recall thinking, “I’ve never done that before?” But, thankfully, I was also the guy who was prepared for absolutely any contingency life threw my way. It’s an ongoing joke in my family, you need a Band-Aid, ask Uncle Tony, need a flat tire plugged, ask Uncle Tony, on a hike in the forest and have a piece of beef jerky stuck in your teeth and have an immediate need for dental floss…you got it, ask Uncle Tony.
My life went to hell one little piece at a time.
I used to tell stories, and some of them were even true. I used to write without any effort at all. I’ve been published and I’ve had a lot of people describe with tears how much some of those stories have meant to them. I’ve also used my talents to raise money – and I’m talking tens of thousands of dollars – for just about anyone who crossed my path and had a legitimate need. I used to joke, but only a little jokingly, that I had never been lost in my life. I was truly blessed.
The pieces continued to fall away one blank face at a time. People would talk to me and I could see their lips move and had no idea what they were saying. I came home from work one day and told my wife that long married friends were getting divorced and the next day I told her the same story, oblivious to the fact that she already knew. And a thousand other stories, all with the same beginning and end happened to me, around me, and through me. And I couldn’t see the forest for the trees. It’s like being a spectator watching the movie about your life, but you are completely amazed by what happens after you think it can’t get any worse. But it does.
At some point I looked in the mirror, into those sad sunken eyes where my life used to live, and convinced myself that I was in the first stages of Alzheimer’s, and what do you do about that? You go to bed and stay there. You go to bed and hope you don’t wake up. You go to bed and hope if you do wake up things will look better in the morning. And they don’t. By then you’ve already denied so many times that anything is wrong that you’ve even convinced yourself. But lies have a way of finding their way back to you, and if I had a dollar for every time I lied about remembering something that I didn’t and another dollar for every time I said, “Oh I remember when you said that, I thought you were talking about the time when you said this,” I’d be a very rich man.
In fact just recently I had a woman come up to me and say “You look familiar, do you have a brother?” and it took me every bit of 15 or 20 seconds to think about the correct answer? If you think that doesn’t rip out a piece of your heart, you’ve never lived it, and you’ve never read “The Notebook”.
Eventually I find myself in the Veterans Administration Hospital in Fort Wayne talking to a doctor. He looks at me as if I’m speaking Portuguese as I complain about the headaches and the back pain, after a while stumbling for words, he interrupts “have you ever been evaluated for a TBI?” and for a very brief moment I considered saying yes, because I don’t remember if I have or haven’t, and I really don’t think I’ve got anything left to give. That was one of the rock-bottom moments I’ve had. But someplace way back in the corner of my mind – where my long-passed grandparents reside – Grandma Densel says, “Tony you know that’s what you need,” and a week later I’m on my way to the VA in Marion to meet the TBI expert.
As I typed the paragraph above, three times in a row I typed “rezide”, and three times the auto-correct fixes it for me, and I still think I am right and the computer is wrong, which is a small glimpse of what this has done to my life.
Somewhere between Grandma’s urging and my lies to myself that it would get better if I could just wait a few more days, I decided I would go to the Arby’s at Exit 64 (where you leave the highway to get to the Marion VA) have breakfast, read a magazine and then come back home. I’d tell them the doc says I’m fine. No one besides me would ever know, and the friendship that I’d formed with my lying denial side was one of mutual disrespect anyhow, so there was nothing to lose there.
My wife had to work that Wednesday and I thought I was in the clear, my daughter Alex was in high school and Jack – although I’m sure he would have if I asked, couldn’t drive because he was in school too, that and the fact that he was only 10 years old. But into the picture pops my oldest daughter Kaitlin, she was a sophomore in college – and would go on to be one of my biggest advocates, and thorns in my side, in my venture to get as much of my life back as I could. “I don’t have class on Wednesdays so I will pick you up at 0730.” My fool-proof plan to bail out hadn’t allowed for this development.
I still have never asked her if she had sensed that I wasn’t going to follow through, I guess I don’t want to know, but I do remember that it rained the whole way there and being who she is, she dropped me at the door and had to park more than a half a mile away. To prove that I was still thinking, albeit not clearly, I considered meeting her back in the parking lot, telling her Doctor Rivet called in sick and we would have to reschedule for another time – but it surely wouldn’t be on a Wednesday.
Grandma Densel was having no part of that, and she made it clear, so I waited for Kaitlin and we made our way up to Doctor Rivet’s office together.
I sat in a chair next to the desk of the man I’ve credited over these past few years as the one who saved my life. He was a young man with a French-Canadian accent. All I knew about him is that he was one of the VA’s premier Physiatrists, a physician specializing in Traumatic Brain Injuries, and he was young.
Eventually I had to laugh. He looked as though he was a student himself, and since the filter in my brain that used to keep me from asking improper questions was still lying in the sand in Iraq I just asked him how old he was. He looked at me, like you would look at a stranger who just asked a question, the answer to which was none of their damned business and politely replied, “I’m 29.” Apparently he was in high school and college at the same time, and he was, and still is, a genius.
He was also thorough. He started at the beginning, every minute detail of problems I was having and problems I wasn’t even admitting too. He questioned my daughter almost as much as me, because – I figured out later – that after a few minutes he had already realized that I was convinced that there was no damage to my brain…and that I was either in denial or a liar.
I remember very little about the actual interrogation but I do fully remember that after some of the more difficult questions like “are these symptoms having any affect on your family?” I was saying “not much” and “I don’t think so” while Kaitlin was saying “yes, definitely” and “you have no idea.”
As the questions became more personal, and more incriminating the thing I remember is that I heard a sound and looked back over my shoulder and saw that Kaitlin was sobbing. I don’t know if she was just sad to hear the words come out of Doctor Rivet’s mouth, or if they were tears of relief that after all I had put my family through so far, at least now it wasn’t a secret, and Doctor Rivet was pretty clear that help was available.
When I say help was on the way, maybe I should have said the Cavalry was on the way. Help is when someone assists you at the customer service counter. This was help on an epic level. Doctor Rivet ordered more tests, scheduled appointments and set me up with the second person I’ve credited with saving my life, Diane Shafer-King, she is a Speech Therapist at the VA here in Fort Wayne.
To be fair, it would take more words than I’ve already used here so far to describe my experiences with Diane and the help – and hope – she’s given me. It is a story that I will tell at another time, so I will just stick to the high points here.
She often reminds me of our first meeting when I told her, which I’ve told a few select other people over the years, that if it were not for my family and friends, I would just get in my truck and drive away. And I meant it from the bottom of my heart. I’ve even packed twice.
But the words that Diane has used on me over these past nearly two years of intensive counseling and brain therapy, have always been right on track. She was never too harsh, never too meek, always just right. I jokingly refer now to the early days of therapy – when I didn’t really care if I was alive or not, I was that ambivalent – when she put me through a battery of tests and therapeutic exercises for my brain and I cried. I would have never guessed that exercises for my brain would be much more difficult than anything I’d ever done physically. More difficult even than that first week of boot camp. And my brain was nearly as ambivalent as the rest of me.
Diane and I had a long hard road ahead of us, but thankfully she forgot to tell me how much work it was going to be.
Like I said, I can’t do her justice here, but I will say that she has never lead me down a path that I couldn’t or shouldn’t go down, and she’s never been anything but honest, professional and downright remarkable, and I have to smile thinking about her reading this the first time and blushing, and thinking out loud, “I was just doing my job.”
She is that kind of soul.
She’s been there for me, she’s set me straight more than once and she looked me in the eye when she said, “This may be as good as you’ll get.” She knew it would hurt, but she also knew it was time for me to start planning for the next step of my life, time to accept what it is and move forward. If you can’t remember how to get home from work- a drive you’ve made every work day for 26 years, or if you can’t immediately answer a simple question like “do you have a brother?” you don’t have any business working on fighter jets, I’m just sorry I was one of the last ones to figure that out. This brings me back to my original point.
“Hey, did you send that insurance paperwork?”
I looked at my cell phone a second time, as if the answer was going to pop out at me? I knew that I knew the answer. I knew that I had the information somewhere in my brain to solve this great mystery, I just couldn’t access it. Insurance paperwork can wait another day. My wife has become my “reminder,” often it seems that that’s the only way anything gets done. My life is a maze of post-it notes, cell phone reminders and other adaptations. And then I see Diane’s face, and anticipating next Fridays every-other-week appointment, when we talk about my life over the previous two weeks, she asks, “what tools did you have available?”
So unashamed of the fact that I can’t think of the answer to a very simple question, I phoned a friend. Actually it was text a friend, from work, and I said “I am drawing a blank; I can’t remember if I sent that envelope, it was on my desk?”
He replied twice, the first one was the answer I needed, “Yes, I have you covered, I mailed it.” The second text was him making a joke. “If you’re drawing a blank you must be playing poker.” Given the problems I’ve had over the past few years and the lows I’ve had, if nothing else, I can still take a joke. And I laughed.
Later last night I received the following text “Hey man, I know you have trouble remembering things, and I know it’s serious. I’m sorry I made a joke about it.”
Which brings me back to my original point. Finally.
Every person you meet today has a problem, some are very small, and some are very large, some are obvious while others are invisible, or maybe even unimaginable. Every person, even the most happy-go-lucky person you meet has some struggle that no one knows about, and probably hasn’t taken the time to ask about. It may be a problem that you would have no clue and no way to know. It may be plain as day, and you, like the rest of the world sometimes are just afraid of the answer. But a simple question, “How are you doing?” or “Are you okay?” followed by full, undistracted attention to the reply, may be the one thing that keeps that person from the woods and grandpa’s shotgun.
In closing I should add that there have obviously been many other people who have helped me make it this far and if I started naming names and telling stories this would turn into a book. But to my wife and kids I say, “Thank You, for all you’ve done, and I am truly sorry for all I’ve put you through, and I thank God every day that you stuck with me.” Suffice it to say I’ve been lifted up and carried much of the way along this journey by family, friends and more than a few “chance” encounters with strangers and to each one of you, all I can offer is my heartfelt eternal thanks.
I guess one of the things I’ve learned is that of all the things this TBI has taken away, I want to remember it more for what it’s given me. I have more compassion, more appreciation and more understanding. I have a greater tolerance for people and the things that used to drive me crazy. I have a constant reminder that, while life could be better it could also be so much worse.
I’m not one to “settle,” but as the gains get more difficult and the distance between improvements gets further apart, I just hope I don’t get to the point where “as good as it gets” is good enough. There are more long roads ahead, I just thought it was time to stop for a moment, take a deep breath, share this gentle reminder and press on.
I also hope it doesn’t sound like I’m whining, that is so far from what I wanted to express, but with the TBI comes the constant reminder that you never know for sure if you are on the right track, saying the words people need to hear, or if to them you are just speaking Portuguese.
So please look for that person that needs you, and keep looking for the rest of your life. Remember that not all disabilities are visible, not all troubles are apparent and not all despair wears a frown.
There will always be someone who may need their own Cavalry, and their Cavalry may be you.
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