Eric Kussin - #MySameHere story

by Eric Kussin - CEO & Founder - We're All A Little "Crazy": Global Mental Health Alliance™
March 18, 2020

I have some very important personal information and updates to share that should take no more than 15 minutes to read through. For the past two and a half years I have suffered through, and then ultimately started improving from a debilitating health crisis. Unfortunately, because of perceptions in our society, as I go on to reveal the details of that last line in the coming paragraphs, your thoughts about what I just shared may change.

I sincerely thank you if you are able to take the time, and pass this on to those who may benefit from reading its contents, as you find out more. I am choosing to be transparent and open in sharing this information, because I believe in doing so, I (or we) may be able to change, or even save the lives of a few or many people who may be in desperate need of help…but do not know where to turn . I am happy to speak (contact information below) with you, or ANYONE in your extended family, or friends group (confidentially, of course), who may be able to relate to some or all I’m about to share.

You may question why, with a very public-facing career on the business side of professional sports, I’d choose to share such personal information in such a public forum; however, looking back on my experiences over the past two and a half years — the struggles I’ve dealt with and the knowledge I’ve gained, my perspective on life has shifted tremendously. I now know I was meant to go through an extremely rough period so that I may take what I’ve learned, help others, and spend the rest of my life breaking down misconceptions and opening up dialogue related to sensitive topics that are still “taboo” to discuss in America and around the world, today — especially because we are all affected to some degree. Now, after a long battle, I am much healthier and ready to talk openly about my journey, and I am eager to help others find a path to recovery. I’m sorry that this is not your traditional fbook/linked-in post solely about celebrating the positive in our personal lives, or the progress we’re making in our offices, but I felt the story had to get out there — and this was the right forum to do so — to my personal and professional network.

  • For roughly the past two and a half years, I suffered with severe clinical PTSD, Anxiety and Depression. To the world, these conditions are put under the umbrella category of “mental illness.” I put that term in quotes because I believe that name and categorization of how our mental HEALTH is impacted, only perpetuates the negative “stigmas” so often discussed.

Every year, we hear about 42.5 million American adults (or 18.2 percent of the total US adult population) suffer from some form of “mental illness.” According to the World Health Organization, Depression alone is the leading cause of disability around the globe. Those stats refer to those who are are believed would fit certain diagnosable criteria. The true numbers are so much higher. However, you rarely hear the topic discussed openly. Celebrities have started to come out in droves to discuss their battles. But the negative perceptions related to these diseases have changed very little; and now after my fight, I believe I know why.

Some I’ve consulted with have recommended that since I have now tamed this terrible period in my life and am the happiest I’ve been personally and professionally, that I should refrain from sharing my story — for risk I might jeopardize people’s perception of me. Instead, I should just go back to living my life and “blend in,” keeping my fight private, and not risking future employment opportunities based on judgments made. However, I feel as though that decision would be irresponsible and selfish given how I might be able to help change the narrative related to these very important topics. Therefore, please feel free to share this information publicly or privately — as I would like to help as many people as I can. I apologize for the length and detail provided, but I wanted to share as much as possible so that if any of it is relatable, those reading it can find comfort knowing they are not alone, and that they too can find a path towards hope and healing.

Back in the summer of 2014, after putting my nose to the ground for the previous 13 straight years working in the professional sports industry — with leagues and teams all over the country, loving most every day in the office, I moved to Florida to take on a role as the Chief Revenue Officer of the Florida Panthers hockey team. I landed in a new city, was excited to take on a new challenge, and was thrilled to come work with such a genuine group of owners and executive management team members. For six months, I was loving the in-office rewards of the day-to-day.

After experiencing some general “lulls” in my overall enjoyment of activities outside of the office, I expressed my concerns to a psychiatrist I had been seeing, and he decided to switch me from a common SSRI drug, Lexapro (that I had been taking without incident for the previous 10 years, consecutively), to a drug I had never taken before, Paxil. The ramifications from that change, at the beginning of 2015, set off a chain of events that caused me to spend the next two and a half years in something I can only describe as a living hell. However, along the way I learned that while genetics, traumas, life experiences, environment and even diet and inflammation can contribute in a big way to how one feels over time; PTSD, Anxiety, and Depression are very much a result of those factors creating imbalances as well as other malfunctions throughout many parts of the body, not just the brain.

These are all PHYSICAL malfunctions of the body (and brain); just like other, more openly discussed complications are PHYSICAL malfunctions of the body, such as: diabetes, heart disease, cancer, etc. The difference is that for some reason in our society, genetics & traumas affecting our system are looked at as weaknesses and are covered-up, causing patients to suffer alone; whereas other diseases are openly shared, and patients are comforted until they recover. I believe this may be due to the role that the “life experiences” factor can play in bringing about those physical malfunctions — leading people on the outside to believe that sufferers are “weak.”

Once again, the categorization of these issues as “mental illness,” the constant perpetuation of the labels and the belief that only “1 in 5” are affected, only exacerbates the issues. Instead “poor mental health” better describes the fact that mental wellness exists on a continuum. We all are affected in some way by mental health slips because of life’s inevitable stresses, traumas, and battles. However those at the end of the spectrum where their mental health has suffered the most, are put into the category of the “mentally ill” and are unfairly “thought less of” for something that we all deal with, just to varying degrees.

I am happy to share my story below, in the hopes that I can help others. I fought my battle with the help of supportive family and friends I opened up to, and I am now feeling much stronger and ready to be of service to as many as I can. Below is the short story of how I got “there.” I am hopeful sharing this journey will help many people and give me a platform to speak more broadly about the topic.

I mentioned above that one’s “life experiences” are one of the factors that cause physical malfunctions of the body and brain. Growing up, despite having a very loving and supportive family and friends group, and being involved in many activities, I had a very difficult childhood, watching my older brother, four years my senior (starting from the time I was nine years old), go through the following over a 20+ year span.

In chronological order, he:

Broke the largest bone in his body, his femur bone, in an accident and was placed in a body cast for a year, home schooled

Came down with A.L.L., a children’s form of Leukemia, for five years — which came along with chemo, radiation, spinal taps, home schooling again; he fortunately went into remission, when he…

Flew out of the back of an open jeep while a friend was driving, landed on his head, was in ICU for a month and lost partial vision in one of his eyes

Came down with a relapse of A.L.L. Leukemia

Went into septic shock from a stronger chemo protocol

Fell into coma for almost three months, during which point my family did not know if he would have any brain function at all, IF he woke

Finally arose from the coma and needed a shunt put in his head because too much fluid had built up in his the brain while in the coma

Went into kidney failure from the trauma the septic shock did to his organs and went on dialysis

Received a kidney transplant, donated by my father

Has most recently dealt with a number of issues related to the shunt, as well as blood clots

Incredibly he is doing well now, working as a lawyer in New York City, with a loving wife and two beautiful little girls. However, I didn’t know from mental health complications at the time I was watching this all take place from a front row seat. I didn’t know from psychiatrists or psychologists, and I thought PTSD, Anxiety and Depression were just chapters in high school health textbooks that defined the conditions simply as “seeing great atrocities, being on edge, or feeling sad.” Due to this lack of knowledge, I coped the best way I could, and held in all the traumatizing memories from those experiences, never speaking to anyone about them. To everyone else, I was the smiley middle child of three boys who played on every sports team and was dealing just fine. I made my way to have a wonderful experience at Cornell University, got involved with an incredible group of friends, walked on to the basketball team my senior year, and landed my dream job with the NBA League Office upon graduation. I was hanging on just fine, as stressful work environments and public presentations seemed to bring out the best in me.

However, at age 25, while working for the NBA League Office, I experienced some higher than normal Anxiety symptoms (unsure at the time of the cause), and at the suggestion of an extended family member, went to a psychiatrist, and was put on 30 mg of the prescription drug, Lexapro. This drug served me well enough, along with the coping mechanisms I had learned to deal on my own, to put a band-aid over any symptoms I might have, and to live an enjoyable, almost care-free next 10 years working in various markets around the country.

On top of witnessing the traumatic experiences with my brother, which I did not know were being “hard-coded” in my brain/body and doing PHYSICAL damage to my system, I dealt with three other major losses in my life over that time:

- I had volunteered with a 16-year-old patient at the Hospital for Special Surgery and quickly became close friends with him and his family. He was an amazing young man who was born with no arms and under-developed legs, yet he taught himself how to play basketball while driving his wheelchair with one foot and dribbling and shooting with the other. His charisma was unmatched. Unfortunately, on a day I was set to take him to the hospital for a reunion with kids he went to camp with, he passed away early that morning from an aneurysm.

- My best childhood friend, whom I grew up across the street from, whose house I had slept over about as many times as my own, passed away suddenly from a heart attack, alone in his apartment. He had just entered his 30s. He was a larger than life character with a tremendous heart.

- A great friend whom I met and became roommates with in NYC, also just as he had entered his 30s, passed away from a heart condition after collapsing during a routine run at the gym on a treadmill. He, too, was one of the sweetest individuals you’d ever want to know, and I miss him more and more every day.

I was fortunate that despite all the difficult things I had witnessed, the Lexapro had kept me in a decent enough of a place as that band-aid, that I was greatly enjoying life and mostly in touch with my emotions — able to keep much of these “bad” experiences suppressed. That was… until all of those experiences and the damage they had caused PHYSICALLY to my system, started to creep up on me and take a more active role in my conscious mind, my body, and my day-to-day functioning.

The switch in Florida to the Paxil, from the Lexapro, was the straw that broke the camel’s back, and my brain and my body no longer had a strong enough of a band-aid necessary to close my wounds and stop them from allowing the bad symptoms from the built-up PTSD, Anxiety, and Depression, to start gushing out. The labels, to me, matter little — what matters is the symptoms were ones that many seem to be able to relate to. That’s the thread that ties us together — challenging life events combined w our genetics that bring us to places where we fluctuate up and down on that same continuum.

When severe, these mental health declines wreak havoc, and the results are scary. I began to experience the following symptoms, which only partially describe the misery early on, and only got worse with time:

Anhedonia — loss of interest in everything in life — food, sports, family, friends, dating — a complete numbness

Depersonalization and Derealization — out of body feelings that leave you to not even be able to recognize your own self

Loss of memory both short and long term

Complete lack of emotional connection to family members and friends

No vision of the future — inability to feel ambition, or see goals or mileposts

Loss of critical thinking skills and an inability to problem solve

Social Anxiety about talking to anyone and everyone

Agoraphobia — fear of leaving the house

Cognitive Dysfunction — I literally could not put sentences together, talk on the phone or have coherent conversations

Almost no connection to the world around me — no care for (nor knowledge of) what day of the week, nor month it was

No “rewards center” meaning I had nothing driving me to go and accomplish tasks or enjoy any actions I might take

Groundhog’s Day — waking up daily and feeling like there was no difference from one day to the next

Somehow, I managed to go to work in Florida for roughly a week after the Paxil change, slipping deeper into the feelings above, until I finally hit a breaking point and spoke with our CEO, and asked to take a leave of absence for an undetermined amount of time. I didn’t know how long these feelings (or lack thereof) would last and had NO idea about the road I was about to go down. As an aside, the owners and management team of the Panthers could not have been nicer and more accommodating and I will forever be grateful that this happened while working for such a first-class organization. I was saddened to have to leave a staff I helped to build almost from scratch (and apologize that I left new hires and friends I had made on the staff so early on), but I had no choice — my brain was “shutting down.”

I returned to New York and the symptoms only got worse. Over the course of the next two-plus years, I spent most of my days laying in a bed, staring up at the ceiling, praying for each day to end so that I could fall back asleep and escape the hell. I didn’t watch TV, didn’t exercise, didn’t listen to the radio and rarely had the energy nor cognitive ability to speak to friends. I went many stretches without eating. My mind was blank, and I was living through a nightmare I saw no end to. My only weekly activity involved going to doctors to try talk therapy (when I was capable), and different treatment modalities including “cocktails” of prescription drugs. Over that time, I tried the following drugs all in various combinations, prescribed by four different psychopharmacologist experts I saw for various periods of time over that stretch. Most of these drugs fell into one of four main categories of anti-depressants (SSRIs, SNRIs, MAOIs, and Tricyclics) while others were “add-on” drugs that were meant to support or boost the main drug at work.

Lexapro

Paxil

Zoloft

Prozac

Latuda

Anafranil

Parnate

Luvox

Pristiq

Adderall

Xanax

Klonopon

Wellbutrin

Abilify

Mirapex

Zyprexa

Seroquel

Thorazine

Atarax

Buspar

Lithium

Lamictal

Vyvanse

Dexadrine

Trintillix

Remeron

Nuvigil

Provigil

Namenda

Effexor

Selegiline

Rexulti

Each drug came with its own set of awful side effects, one of the worst of which was from the Parnate (one of only two MAOI drugs I tried). I developed orthostatic hypotension (or severe low blood pressure: 90/50). Feeling I’d faint if I stood up, I crawled down the stairs in my house, crawled on the driveway on the way to my parents’ car, and my father drove while I was laid down in the front seat, on the way to a hospital emergency room. There, I was given a steroid, Florinef, for five days, inpatient, until the Parnate was out of my system and my blood pressure returned to normal.

In addition to drugs, I tried the following other treatments:

- 22 treatments of Transcranial Magnetic Stimulation or “TMS” where they shoot electromagnetic waves into your brain for 40 minutes each session, trying to correct the malfunctions of the brain

- 16 treatments of Electro-Convulsive Therapy or “ECT” over five weeks, where they shock your brain into seizure while under general anesthesia, again trying to “correct the the malfunctions of the brain;” many may know this as “shock therapy” from the movies

Unfortunately, despite all these efforts, in addition to group and individual talk therapy, I saw little to no improvement. I thought my life was over, and nothing around me mattered. However, something in the back of my mind told me to keep fighting and keep trying different treatments until something got me out of that hole. I had to turn this around and find purpose to my struggle.

I finally started to make a turn for the better in February of this year (2017). I began seeing an “integrative psychotherapist” who sent me to a weekend “breathing” course called “The Art of Living.” Through this psychotherapist and this course, I learned how over time, certain breathing practices worked to naturally repair the “polluted and affected” central nervous system. The active breathing was like a hard brush, with each conscious breath scrubbing the “traumatic pollutants” that had built up over time, off of my central nervous system (very much having to do with the largest nerve in our body, that is signaled when we breathe — the vagus nerve), opening me up to feeling emotions and desires once again, as well as regaining cognitive functioning and drives. This psychotherapist also sent me to a new psychiatrist in Manhattan who is an expert in mixing Eastern and Western medicine. Visiting this doctor proved to be the true turning point on my road to recovery.

After providing my background, he explained to me that this consistent “dysfunction, numbness and misery” I was feeling was likely due not only to shortfalls in how my body processed various neurotransmitters like serotonin, norepinephrine and dopamine, but also other PHYSICAL malfunctions in my brain and central nervous system (like the vagus nerve mentioned above). These malfunctions also involved the speed of various brain waves, and caused parts of my brain that were supposed to talk to one another, to stop talking, while parts of my brain that weren’t supposed to talk to one another, to start doing so. The PTSD (which was his core diagnosis), Anxiety, and Depression caused these physical malfunctions in my brain; however, everyone’s genetics are different in how a brain is able to physically handle the rigors of life’s traumatic experiences…and everyone’s life experiences are obviously very different. In our fast-paced jobs, daily stress is the norm, and we all face difficult life events, so everyone is susceptible (5 in 5, not 1 in 5). Where the previous treatments mentioned above had failed me, rested in the fact that they were pills and procedures that alone insufficiently corrected what was off and needed healing in my brain/body. They also ignored the lack of production of important chemicals coming from my adrenal glands and other areas of my body, chemicals I was no longer producing due to my body’s continued attempts to balance out previously highly-stressful/traumatic situations.

As a result, my doctor began by augmenting the Lexapro I was back on, with various over the counter herbal supplements as I continued with the structured breathing practices, daily. He said these supplements were needed to help the Lexapro (or whatever main drug I was being treated with), to work better and more effectively produce the neurotransmitters I needed. The Lexapro (or any of the other 50 some-odd Rx drug combinations alone) was not sufficient in a vacuum. He also prescribed an alpha-stimulation machine (that looks like earphones attached to an old MP3 player), that I wore for an hour a day and clipped onto my ear lobes, to even-out my brain wave activity.

After combining this doctor’s more “natural” treatment recommendations, with the Lexapro, I started to get my function, feelings, and desires back slowly but surely, and am now back to a point where I feel “myself” again, much healthier and ready to attack the world; and once again at the happiest place I’ve been personally and professionally. As a result of the misery I experienced, I now appreciate even life’s smallest miracles like — being able to enjoy each bite of food, feeling unconditional love towards my nieces, and being able to type this very post. It may sound hyperbolic, but being “able” to do these “normal” every day things, each feels like going to game 7 of your favorite team’s playoff series. You don’t realize all the miracles that take place every second of every single “normal” day, until normalcy is taken away from you. The lowest lows absolutely do produce the highest highs.

Let me use this time to apologize to the people in my life who I was unable to keep in touch with over this difficult time: many friends, colleagues, and partners. My intent was never to fall-off; I merely lost the capabilities and the strength to communicate. Thank you to everyone for understanding and I hope to be in touch with you all soon.

So, I am now working on getting the word out about my experiences so that I can help people and help change the conversation around topics like “mental illness,” PTSD, Anxiety, and Depression — and make that conversation more inclusive.

Why should someone who takes an SSRI or does certain exercises/practices to fix a brain/body malfunction be treated differently than someone who takes Synthroid for a thyroid condition? Why do we label and put people in separate categories when we ALL face challenges in life that leave us susceptible to our mental health declining at various times in our lives,? I will be looking to talk publicly to groups about this topic, and one-on-one, to help as many as I can and am happy to help any friends I have, or staffers you have, who may be struggling. In the meantime I’m working on building a number of start-up ideas with a group of friends who are partners at an ad agency, and have been loving working with them in their offices in NYC in what is a tremendously collaborative, creative and strategic environment. I am greatly looking forward to what the future holds in terms of other work and personal life aspirations.

As my partners are very heartfelt and understanding individuals who also want to change the negative perception of many of these terms and ideas in the mental health space, and bring about a paradigm shift, we are collaborating on the name of a .org that will strongly communicate that these conditions are once again PHYSICAL malfunctions of the brain/body, and should be treated by society no differently than other diseases that don’t come with the negative perceptions — and to also reveal that on the mental health continuum, we all are affected to some degree and are all in this together. I promise to share more as this develops.

PLEASE, take down my information below and if due to personal or professional stress and/or traumas, you have experienced ANYTHING close to what I described above, or know someone personally or professionally who has — no matter how similar or different, don’t hesitate to contact me any time, as I would love nothing more than to help. Thank you for taking the time to read my story — and hopefully, together, we can change and maybe even save people’s lives.

Much love and appreciation,

Eric

(Important update as I’ve been contacted many times from this fbook/linked-in post specifically now — as of 11/14/17, we launched a non profit to help ALL those with mental health complications to get the help and support they need. On fbook check out: We Are All A Little Crazy for stories of every day ppl sharing their own battles and what has helped them. Also log on to weareallalittlecrazy.org for resources (called STARR Treatments) and stories of celebrity battles).

email: contactus@weareallalittlecrazy.org

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Twitter: @SameHere_Global