It all started on a Friday morning in early June 2018, I had taken the day off and
was looking forward to not spending 5 hours traveling back and forth into the
financial district in NYC. The plan was: I was going to spend the day enjoying our
newly build shore home and riding wave runners with my daughter Jordan. Wave
runners were a passion of ours, something we had done for over 15 years. The
weather was nearly perfect for an early June day. Unfortunately, Jordan had some
emergency dental work and at the last minute wasn’t up to riding. So, I
remember telling her I’ll just take the wave runners across the bay to fill them up
and I would be back to check up on her to see if she was up to riding later on in
the day.
I filled one up, rode back across the bay jumped on the other and filled that one
up next. On the way back I decided to ride over to a specific spot Jordan and I had
been to the night before. Some huge house that use to have a private bridge out
to it before super storm Sandy but was now sitting in the bay on its own island
that had been completely taken over by birds. A weird and
eerie site to say the least.
The next thing I remember was waking up with my family and love ones around
me crying smiling and looked genuinely surprised to see me.
My entire body was
pretty numb, my mind pretty foggy and I had a pounding headache but I
remember asking (or at least thinking I asked) what’s wrong, what happened and
why are you all so upset? I knew I had what felt like dozens of wires hooked up to
me, a bunch of IVs but remember feeling around for a trach and there wasn’t one
so I figured whatever happened wasn’t THAT bad so I didn’t understand what was going on but I truly had no idea what they had been going through and for how long. Why I was in ICU I had no idea.
For a couple days I vaguely remember only a couple very short conversations and
being sedated and only wanting to sleep. I do remember whenever I opened my
eyes they were there, I remember them holding my hand, rubbing my arms and
head. What I remember the most was the smiles and the signs of relief on their
faces. I felt terribly bad, clearly, I scared them horribly, I tried to assure them I was
just fine. I still had no clue.
Over the next few days as the numbness of being in a coma started to wear off so
many things became very real. First and foremost, I learned the odds of me
surviving the first 24 hours after the accident were pretty slim. It turns out I was
flying around on the wave runner and hit what the State Police who did the
investigation believes was a sandbar in the middle of the bay. The most amazing
part is the only other boater on the water that early that day turned out to be a
cardiologist from NY who was fishing a hundred or so yards away.
He happened to look up saw me riding around and then later looked up the wave runner stopped and no one on it and decided to pull his anchor up and head over there to take a look. I was unconscious face down in the water. He estimates I was
under water for over 5 minutes and it took him another 4-5 minutes to get my
heart beating. The State Trooper who was at the marina where I got taken to by
the cardiologist met with my family at the hospital and is the one who told them
the whole story.
The State Trooper had gotten my phone off the wave runner and was able to get a
hold of Jordan who less than two years ago had lost her mom Michele
unexpectedly, which was devastating for both of us. Jordan was able to get in
touch with Goldine, my girlfriend and someone I’ve known for 40+ years. They
met each other outside the hospital too afraid to go in alone based on what Jordan
was told by the State Police on the phone.
Once they did go inside what they were told truly was horrifying. The Dr’s were
still trying to pump all the bay water and sand from my lungs, my fever was
extremely high. I was in a coma and they had to paralyze my muscles to stop them
from convulsing. They were told the by the lead Neurosurgeon and a handful of
other Dr’s that they had done all they could for me at that time. It was now
entirely out of their hands and if they believed in prayer they should pray, hard.
The neurosurgeon made it very clear even IF I were to survive my brain function
was very much at risk being without oxygen for that long. If I were to wake up, I
might not even know who they were. You normally begin to lose brain cells at ~4
mins without oxygen. It was the first time any of us heard the words Anoxic Brain
Injury. But first I would have to survive the afternoon and evening.
Fast forward about a week a later and I was awake. Somehow, someway even if
there wasn’t much of a medical reason why I was still here. My personal belief is
I’m here because of the people around me who love me as much as they do and
willed me to live, and to Michele who wouldn’t let me leave Jordan, one
unthinkable loss was already one too many for her.
**Months later when I returned to the hospital to say thank you and to bring
them flowers my Dad and I talking to the Lead ICU nurse Lisa who became
Jordan’s support system within the hospital, letting her bend the rules etc. Said
that she was approached at one point about asking Jordan to sign off on the
process of accessing my organs for donation and she said no it was too soon even though she wasn’t sure she believed it herself. She didn’t have the heart to do it at
that time. She wanted to give me more time to hopefully wake up.
As the days went by in the hospital and the overall numbness wore off. I started to
realize I had some real physical issues. My extremities weren’t acting normal and
they were all on fire. I was still stuck in the hospital bed and was already being
warned I wasn’t getting out any time soon which I thought was weird. But there
was a lot of uncertainty and lack of clarity in my mind which seemed to be
growing. But my primary focus was my legs didn’t feel right and my left arm didn’t
work and my hands didn’t either. Once all the numbness completely wore off my
hands and feet really were truly on fire 24x7 and for an added bonus most of my
ribs were broken so even moving around in the bed wasn’t much fun and
coughing well even worse.
Every day the neurologist would come in and talk for a while he also explained
that when your body shuts down it lets your extremities go first (the body’s way of
trying to preserve your core organs as long as possible) trying to explain why my
legs felt weird and everything was on fire. Then he would ask "Do you feel anything weird
in your head, any cloudiness, memory issues etc." My answer without even
thinking about it was always “No I’m fine there, just have to fix my
hands, legs, feet.” Oh, and the headaches that were only second worst to the
constant burning. I kept asking about when can I get out of bed and walk to the
bathroom etc. The answer was always “we’re not going to do that yet”.
Every day it was the same conversation with the Neurologist for about 7-8 days.
Any issues memory wise etc.? Every day I would get more assertive “No I’m good
there, thank you”. But these other physical things are broken. He would always
explain they can take a very very long time or they may never come back. Finally, I
decided when nobody was looking, I was going to grab my IV poles and walk the 5
feet to the bathroom. Sat up with tears in my eyes because of the pain put my feet
on the floor (I thought I did anyway, I couldn’t really feel the floor with my left
foot) and off I went. I made it less than one foot, landed face first, turns out my
legs didn’t work at all and my arms didn’t work well enough to even break my fall.
I didn’t get hurt but now I was at a whole new level of feeling beyond scared. I got
ripped by all the nurses (except Lisa who had been telling me since the beginning,
don’t you ever give up, I was with you in ICU, when they tell you you can’t or you
may never be able to do something you go for it every time!! You’re here for a
reason, you already proved that).
I remember crying the whole night because I was terrified at how my legs just
didn’t work at all. Things just kept getting worse. But now I was back in bed with
a Nanny Cam and every time I moved anything they would yell stay still don’t move.
Finally, after about two days of that Jordan and I would flip the thing off just to say
“Hi” a few times a day. The people watching would almost always reply that’s not
nice, they failed to see the humor. Every once in a while a nurse would come in
shaking her finger laughing because we were doing it so often.
It was the next day or two that the realization that I had a brain issue became
pretty obvious. I had to call my company to talk to the HR department regarding my
short-term disability claim. I couldn’t answer the simplest of questions, my start
date, my employee number (I had entered multiple times every day for 7 years),
my email address, cell phone #, etc. I had to have my Dad help me call back the
next day to get through the simple gathering of information. Even then though I
didn’t “understand” how it all worked. This after having walked some peers
through it over the years before. So of course, when the neurologist came in the
next morning, I answered THE question with “Nah, I think I’m ok there”.
I eventually got moved over to an in-house physical rehab for about a month. I
learned to walk again although it was really ugly. It was mostly a loss of strength
combined with very little feeling in my left leg. When I left there, I was still falling
a lot and living in a raised house with a ton of steps was, and still is challenging
some days. Even today walking with almost no feeling in one leg is hard to
describe but I’m happy to be able to do it. I made some minor progress with my
arms and hands too. My hands were still very much a work in progress. I left
there with my left arm in some kind of crazy brace that bent my wrist as far back
as it possibly could.
The next 6 months were started with in home physical (a joke), speech and
cognitive therapies. Cognitive therapy quickly proved my biggest fear and the fact
that I was indeed living in complete denial since I woke up out of the coma. There
was something wrong, there was something very wrong. I did 3 months of
outpatient hard core physical therapy 4 days a week after finishing the useless in-
home. I was physically as strong as I was going get (which was better but still
poor, and parts of me physically weren’t and still aren’t right). That cognitive and
speech therapy was good but very short term, I guess the insurance company was
starting to run out of patience with my rehab/spending.
The cognitive issue denial truly came to an end around Oct 2018, roughly 6
months after the accident. The neurosurgeon recommended Bancroft
Neuroscience for serious cognitive, speech and psychotherapy treatment. I had
two choices when I walked in there, was I going to be brutally honest which was
going to “hurt deeply” and reveal my true difficulties, or do I just want to do my
time there and shake hands after a few months and move on. Honestly, it wasn’t
an easy choice but I knew that I owed it to those who had dedicated their lives the
past 6 months to taking care of me to try and help myself, they at least deserved
that from me. At the same time the anxiety and panic was becoming
overwhelming. I feared (actually really knew) that I had lost my career, which meant so
much to me, but also had a new house to pay for and had no idea how anything
was going to work out. Life was once again flipped upside down.
After meeting with my psychotherapist Dr. Michael Heptig, it was suggested that I
take a Neuropsychological Test. A stressful 5-6 hour test where they can help pin
point any issues the brain may have processing things in many different areas. I
was really hesitant to take it because I was afraid of the results. I mean I was
crying enough already about the state my life was in with the endless physical
pain, headaches, sleepless nights, just embarrassed to be me and who I now was.
It had become painful clear to me over the past several months I was living in that
world of denial and in such a huge way, I didn’t really need the proof. I wasn’t the
same, nothing cognitive or physically wise was the same. Nothing was normal, my
denial was based on fear and the fact that with all the physical things that were
broken I couldn’t take on another elephant at the same time. I thought at some
level I could fake my way through whatever was going on in my brain. I was wrong,
dead wrong.
The results came back and showed my Executive Function within my brain is impaired as a result of the Anoxic Brain Injury. Taking those results and following up with over 18 months of ongoing psychotherapy the following are some of the things that are drastically impacted for me each and every day. When I say impacted, I really mean my inability to do them:
Planning and organizing
Flexible thinking
Multi-tasking
Problem solving
Self-awareness
Making decisions
Motivation
Concentrating and taking in information
Working memory
Controlling emotions – specifically sadness
So the results were officially in, and the results confirmed what I had been feeling
since the first day I came home from the hospital and looked in the mirror
physically and now cognitively : BROKEN.
The thought of ever looking into a mirror makes me cringe, I truly feel broken in every sense of the word. I’m embarrassed of who I now am and how I live my life. The feeling of I use to be somebody – most importantly as a Dad and a partner in a relationship, a son, brother, uncle. But also as somebody who was well respected in the business world. Someone
who fought and earned his way into a position in my career I never thought I
would have been capable of achieving. Not only achieving financial success but
more importantly earning the respect of those I managed around the globe. They
were a second family which is now lost. Can’t have a career like that ever again or
even a normal life with these deficiencies. BROKEN.
The fact that until the day I die my hands and feet will feel like they are literally on
fire. My headaches continue to be incredibly difficult to describe. My body hurts
from head to toe. I have no balance. I have no memory. I have no ability to read
the simplest of instructions and follow them. I more often than not stop in the
middle of sentences with Jordan, Goldine, or any of my other loved ones. Even
worse is looking foolish in front of friends or people I am introduced to and having
the same thing happen. Start to say something and get lost after a few words, it’s
humiliating. Not being able to remember the name of the cross streets that I live
on. I’ll routinely ask the same question twice within the same conversation. At this
point preferring to hide and shy away from conversations in fear of looking stupid.
BROKEN.
Hey what do you do for a living? How do I answer that question? BROKEN.
Burden – what’s worse than being broken, being a burden.
Not being Superman to your “Jordan”. Way worse than not being Superman
how about not even being able to have a simple fully intelligent conversation. Not
being able to give the advice you want to give because you can’t find the words,
sometimes you can even “see” them in your mind but you can’t get them out, the
harder you try the more you draw a blank. Not being a great partner to your
“Goldine”, one who can be present in an everyday relationship and isn’t always
looking for a way out because of being a failure. A strong independent son to
your loving parents one they can lean on after being my rocks since the day I was
born. A strong dependable brother to your loving sisters, and a great uncle to your cool nephew. A better buddy to Nitro.
At 57 years old the last thing you ever want to be is a burden to those who love
you most. Those who have proven day after day they love you beyond words,
proven there is nothing they wouldn’t do for you. Who have dropped everything
to hug you and tell you everything is going to be alright when you don’t believe
it in your own heart. The ones who moved into your house putting their lives on
hold to will you back to good health.
As an adult I had always hoped to be a giver when it comes to my loved ones and
others as well. I thought I was doing a pretty decent job of it until that one day
when I made a mistake that they and I will pay for forever going forward. The guilt
I live with each and every day of being a burden is overwhelming.
In my still ongoing sessions with Dr. Heptig we often spend the entire hour on this
topic alone. The short version is he asks, “Is there anything you wouldn’t do for the
people around me who you feel like you're a burden, too? Each and every time I instantly
answer “No there’s nothing I wouldn’t do.” So why do I feel like a burden? I don’t
have a great answer other than the feeling is very real, whether it’s logical or not I
guess can be debated. But it’s real. Very real.
To all the people who have taken the time to say but you look great. I
know in my heart you mean well and the words are meant sincerely. I
appreciate the words even if they sometimes hit a nerve. Hell I’ve even
said it to others in the past.
Living with a brain injury or any kind of illness that can’t be seen is a double-edged
sword. On some days we can “look normal” whatever that is, I’ve come to learn in
Dr’s speak it means we “present well” an even more insulting and hurtful term in
my opinion. Just within the last two weeks I went to a new Dr. as I continue to
seek different opinions relating to the constant burning in my extremities and
about 5 minutes in he said “well you would never know, you look great” my
response was “yeah isn’t that fantastic, how lucky am I”. There was a few seconds
of silence I was going to apologize because it wasn’t the best was to make a first
impression but he quickly said “I know that’s not very comforting” to which I
responded “exactly!” He understood where I was coming from and I understood
he meant well....but damn it. I couldn’t let that go for the rest of the day, the
entire appointment was pretty much a blur.
At Bancroft during a group support meeting consisting of about 15 brain injury warriors and their caregivers, we went around the table and were asked would you wish what you’re going through on your worst enemy? The answer was “No” without a spit second of hesitation, there wasn’t a single snide or joking remark mixed in either. I owe a huge thank you here to Mike Tidaback, a true TBI warrior and his wife Renee who literally almost had to drag me to the meeting which I can
honestly say changed so many things for me in a positive way. Mike and Renee’s
road has been incredibly difficult and my ongoing thoughts are always with them.
Thankfully you truly don’t know what it’s like until you live it.
Some people will understand this next thought some people with find it most
hurtful and maybe worse. It’s it not meant to be hurtful in fact out of all this it’s
what I’m most thankful for. Unless you’re unlucky enough to live in the cruel
world of one of the hidden illnesses you truly have no idea what it’s like for those
of us that do, you just don’t.
Unless you’re unlucky enough to live in the cruel world of one of the hidden
illnesses you truly have no idea what it’s like for those of us that do, you just don’t.
I’ve said it too many times to count to Dr. Heptig (he always fully agrees), said it
to my team of neurologist, physical therapist, and a dozen or so other Dr’s along
the way. Some of the Dr’s took offense for sure, their response was “they’ve
been doing this for decades”. It took me about a year to work up the courage
to say it out loud, however it only took me about two months to feel this way.
I would never ever want Jordan, Goldine, Mom, Dad, Pat, Lisa, Lindsey or Chase to
ever, ever truly understand what this is like nor feel this way for even an hour. To
want to lay in bed nearly every day crying wondering why? Wondering why you
can’t remember the simplest things, can’t find the motivation to walk from one
side of the house to the other. What it’s truly like to feel like you’re irrevocably
broken and a burden to the ones that you love the most. To struggle making
decisions and then second guessing them, no matter how irrelevant in the big
picture of life they are. To live with depression and anxiety levels I would of never
believed possible. Going through life truly feeling and believing you have very little
control over how it plays out. To be trapped within your own mind and body. To
live life looking only in the rearview mirror. Embarrassed to be you. The only thing
you’re sure of is you are now and always will be broken.
What keeps me going?
A few things, as you might of guessed I am surrounded by people who love me
fiercely in spite of how I feel about myself. The least I can do for them is to keep
trying, even though some days I fail miserably. Some days it’s still
about the tears, some days the pain and realization that will never change wins
out. But their hugs, I love you's, words of encouragement and endless patience
are priceless. I have tried repeatedly to push them all away or shut them out and
they won’t have it. I’m not proud to say it but I still am guilty of doing it at times.
There are still lots of days when I think they would be better off without me in
their lives. Through it all it is them that have never wavered, truly remarkable,
they are the best of the best. I am most thankful it is me going through this and
not any of them.
Secondly, I want to try and help anyone who might be going through anything
similar to what I’ve been through with my family.
I want, no I NEED you to know you are not alone, there are those of us who
truly do understand what it’s like.
While no two brain injuries are the same, I believe based on my experience
and the experience of the brain injury survivors that I have met there are some
similar themes and stages that we all go through.
I also believe it’s possible that some of those themes carry through to other
illnesses that can’t be easily seen from the outside. Having been a part of
Fibromyalgia support groups for over two decades. I see many similarities and
how deeply the quality of lives have been impacted and even ruined completely
by that invisible illness. The impact on the supporting families can be and is often
devastating.
I am always here to listen.
Holding in these thoughts is extremely detrimental to your path to recovery and
can be devastating to your emotional health. In my opinion there are two distinct
paths that are equally important when it comes to your recovery and health going
forward. Your physical and emotional health certainly have ties to each other but I
think it requires different therapies. If you would of asked me prior to my injury
do you see yourself ever committing to long term psychotherapy, I would of
emphatically said “no”. I can honestly say it’s coming up on 2 years working with
Dr. Heptig. I’m still very much a work in progress trying to find acceptance and a
path forward I have learned a lot about myself, some good some not so good. I
have gained the ability to see things through different views and it’s helped me
immensely continue to fight the toughest battle imaginable – being trapped in my
own mind and body.
So far I’ve spent countless hours trying to put my thoughts together and to put my
true feelings on paper here. I’ve been at this literally for a week. I find it incredibly
difficult; I can “see” what I want to say but can’t get the thoughts out. I apologize
if my thoughts are all over the place, they are. I’ve started over more than a dozen
times. I’ve read and re-read this version countless times. But it’s time to let it go in
the hopes someone may read it and it may make sense to them.
This is also very personal for a number of reasons most of which I have shared
already. However the last one I’ll share is so so very important to me. Someone I
care deeply about and love like a son was injured one year ago this month and
suffered a terrible TBI. Michael has shown more courage in 12 months than I have
shown in 57 years. I am determined to help Michael every step of the way. His
physical recovery is ongoing but he’s made amazing strides and has accomplished
things that didn’t seem possible even 4-5 months ago. You have shown
remarkable strength Michael, the road is long and full of crater sized potholes and
mountain sized hurdles BUT you are doing this, you’re proving it every day.
Progress always seems to take too long and there are plateaus along the way. The
grind is incredibly difficult and challenging, but your whole life is ahead of you.
You are surrounded by loved ones who adore you and will always be there to push
you, pick you up and hold you whenever it’s necessary. It’s such a terrible club to
be in, that’s no secret but you are not nor will you ever be alone. You inspire me
each and every day when it should be the other way around. I hope you realize I
am here for you every step of the way. Just remember I’m an old guy so when you
start picking up the pace too much, I won’t be able to keep up. What a great day
that’s going to be. #RisingStrong
To those of you that have supported other brain injury and invisible illness
warriors, thank you from the bottom of my heart you truly are angels on earth.
We would be lost without you.
To my angels one last time Jordan, Goldine, Mom, Dad, Lisa, Pat, Lindsey, Chase
and Nitro I am truly sorry, you all deserve better. I am eternally grateful to have
you all in my corner. Somehow someway we’ll keep going forward. I love you all
beyond words.
To my fellow warriors I am available to talk 24x7. Here is my contact information. James “Scott” Racz
jsracz@gmail.com
848-224-2995
