You told me you’d never leave me. But you did. I know you were just looking for peace. Yet sometimes I’m so sick with grief and sadness that I’m mad. I am mad that you’re not here. I am mad that I’m alone. I am mad at every person, moment and unknown that contributed to you developing that horrifying disease that ultimately took you from me and from the world.
The hardest part about losing you is trying to move forward in life, peacefully and happily when I still feel so broken inside.
I loved you so much that it’s impossible to describe. It was overwhelming. It started when we became really good friends in high school. I used to ditch fourth period just to go hang with you. It was my senior year, after you graduated, that we became more than just friends. Even when we were miles apart we spoke with such depth every night and our connection grew with each passing word. Our relationship wasn’t traditional and at times we kicked ourselves for it. But, as we always said, our story and our love was perfectly imperfect.
You were my safe space and my home. Affectionately, you called me by middle name, Winslow. You believed in me so ferociously.
You once wrote to me, “Just know someday you will always have my vote for you to become president. Please go out and change the world. I love you more than words can explain.”
That unwavering confidence in me scares me. What if I don’t achieve all you believed I would? What if I do something disappointing? What if I can’t carry on your legacy the way your legacy deserves to be carried?
You were my confidant and to this day you still hold secrets no one else knows. You made me feel strong and loved. I truly lost a part of myself when you left.
The night you died is still so fresh in mind. On December 19, 2015 I received a text from you at 12:24 am.
It read, “Thank you for everything. You have helped me through so much and never ever blame yourself for anything. I love you and will always be over your shoulder to look after you no matter what. Always keep having fun. Always remember me. Always keep striving for greatness, or should I say, first female president. Keep fighting for what you believe for. I love you, Winslow.”
My heart dropped into my stomach. I knew what was about to happen but I didn’t want to believe it. Shortly after, you shot yourself in the heart, not only to end your own suffering but also to help prevent others from suffering, too. You were only 24 years old.
My heart dropped into my stomach. I knew what was about to happen but I didn’t want to believe it.
Some mornings I wake up and it feels like it just happened; my gut wrenches all over again. The details are just so clear in my mind.
Almost everywhere I go and everything I do there’s a reminder of you. Of us. Discovering new music on Spotify, ridiculous dance moves at the bars and watching a movie I’ve seen a hundred times all take me back to you and me.
I am angry at the disease in general. It began to develop likely long before I even met you. You started football in third grade. You loved football. You weren’t as big as the others but you were incredibly more powerful in your punch because you used your head. You weren’t afraid to do that.
One story I remember is you had this drill at practice and you went up against our very large friend, D. You definitely knocked him down and he was twice your size. You were determined and unafraid to go head-to-head with anyone on the field.
But as much as you loved football, you also felt betrayed by it. Because the disease torturing you stemmed from all the concussions you accumulated playing throughout your childhood and through high school.
There were so many late nights where you kept trying to articulate your pain and I kept trying to tell you to hold on. We used our connection and love for music to get you through the particularly rough nights.
You struggled to explain your disease. You had headaches and memory loss, among so many other symptoms.
I remember you told me, “I just don’t feel right, I don’t feel normal.”
You didn’t feel like you had control over your mind.
You went to different doctors, who gave you conflicting answers. One said it could be Bipolar Disorder. Another said you would end up homeless or in a mental institution. There were so many different answers, but no answers at the same time. So, you did your own research and accurately self-diagnosed yourself with Chronic Traumatic Encephalopathy, also known as CTE, a disease that results in changes in the brain in response to repeated hits to the head. Once you realized you had CTE you knew there was no cure and no way to even confirm your diagnosis until after you passed away. Nothing could be done and you knew your symptoms were not going to improve.
Before you died you wrote journals, documenting your disease. You also left behind a note, asking that your brain is donated to science to help researchers learn more about CTE. You did all this so you could lessen someone else’s struggle. And by the way, the researchers who examined your brain did confirm you had CTE.
I know you wanted me and your family to also help spread your message. You wanted us to tell your story and to warn and help athletes. I am proud to share with you that we started a foundation in your honor. It’s called CTE Hope. Our goals are to educate people about CTE and concussions, find ways to prevent CTE, and create better return-to-play protocol.
Now I am sure you want an update on my life, too. It’s been incredibly hard to navigate life without you. One minute I was embarking on a new chapter with you by my side, and the next I had the wind permanently knocked out of me. I became a three-legged table unable to keep steady. But I’ve had to learn. I’ve had to learn to be a three-legged table, if for no other reason than that’s what you wanted. I did it for me, but also for you because you couldn’t for yourself.
Do you remember that you specifically told me I would make it through law school and I couldn’t use you as an excuse not to graduate? Well, Zac, I not only graduated, but I also excelled in law school just as you expected. I won a national award, in part, because of the work you inspired. I interned for the U.S. Attorney’s Office. I got hired by a great law firm. I moved to New York City, something we always planned to do together. I survived (and passed) the bar exam. I traveled the world. But as great as all those things have been, nothing, I mean nothing has been easy. I always feel a slight sting of sadness because you’re not here to experience these moments with me.
You did tell me to move on and find someone great to spend my life with. Now, when I first read those words, I was annoyed and defiant – how could I ever find someone else? Well, a little more than two years after you passed I did find someone. He is a great person, who supports me and loves me and approaches my past and grief with such grace. I often wonder, did you send me this wonderful human? Do you approve? Do you even want me to ask that?
I still live in this constant state of guilt. I truly love my boyfriend. But I miss you every second of every day. How do I live with that? How do I reconcile these two extremely powerful emotions? It’s tough to grapple with the hard fact that you had to die for me to find him.
Even though I am living my life as you advised and honoring your life as you requested, there are so many questions I still have unanswered. And some days I’d rather crawl back in bed, shut my eyes, and remember what it was like to just lay on your chest and feel your steady breath under me. I’ll forever have a piece missing, a piece only you hold. I’ll never stop loving you, or missing you, or wishing you were here. But I have come to realize, no matter how broken I feel or how much I miss you, I owe it to both of us to live my life for myself.
I have to show the same strength you did and live the life we both deserve. I have to accept this forever new normal and let myself be happy, let myself move forward and free myself of the guilt. I have to be the best possible version of myself. Because by doing so, I honor you, I honor your legacy, and I honor the love we shared.
Zac, I would’ve done anything to heal you. Instead I am now doing what I can to keep your memory alive, while also trying to pursue my own joy in life. However I still can’t do that without you. I know you found your peace but as I move forward in life, I keep you close because it is still you that helps me find mine.
I’ll love you until the end.
About the author:
Alison Epperson is a laywer in New York City. In 2018 she graduated from Case Western University School of Law Magna Cum Laude. She was also named National Law Student of the Year by the National Jurist. She is a co-founder of CTE Hope.
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I have learned over my Fifty-Eight years of life, and more specifically over the last 10 that FDR's words about fearing only fear itself ring true; to me, they do, anyway. And, at the same time, how the words of the 23rd Psalm comfort me and my abundant faith in G-d allows me to fear only fear, knowing full well that He is always with me. Growing up in a Non-Orthodox, yet Observant Jewish family nicely brings both together and not only makes me feel more protected but commands me to believe so. You see, I have lived a different kind of life, as we all have to some degree, but mine changes daily. Not that I am ANY BETTER than anyone else, in fact, probably less so... I stray from my stories often. I shouldn't, but since my Stroke in 2012, I have somehow developed some sort of ADD, so please bear with me, the end will justify the means and I will *try* to stick with my story; for you, my readers. I moved my family of the ex-wife and four children Cross-Country in 2002 to be closer to my dad who was turning 75 that year, and while I could not afford both financially as well as mentally to move back to Southern California (where he and my mother lived), I chose the Midbar (Hebrew for Desert) of Arizona. Within just a few short weeks of moving here, I woke up one day with some of the most severe abdominal pain I had ever experienced. I found a local doctor and made an appointment to see him that day. I arrived at the appointment and was ushered into an examination room by their PA (Physician's Assistant), who is supposed to be the same as a Doctor, but not really (?). I was examined and Prescriptions for a Pain Medication and an Antibiotic. They continued to treat me in a like manner for almost six months when I ended up in an Emergency Room, where a CT Scan was performed and Colonoscopy was scheduled. I was then diagnosed with a grapefruit-sized obstruction and abscess in my colon that would require surgical intervention. Surgery was scheduled for two days later, on a Friday in Mid-March 2003. I arrived at the hospital at the designated time, 5:45 am; was admitted to the hospital; told them about ALL my allergies (including a BIG ONE, an allergy to a particular anesthetic agent), and taken to a room where I was put into one of those awful gowns and told that they'd be "right back" to take me to surgery. They promptly came back at 10:30 in the morning and took me to yet another room... to wait some more. At 11:45 the Anesthesiologist came in to talk with me. He informed me that he was going to use Propofol for my induction and that he was planning on using the EXACT ANESTHESIA TO WHICH I AM ALLERGIC to maintain me through surgery! "NOT ON ME, YOU'RE NOT", I exclaimed! "I'M ALLERGIC!!!" On my wrist sat a red band that clearly said ALLERGIES: CEVOFLURAINE. I then proceeded to give him a list of anesthetic agents that I knew to be safe. He tapped me on the knee and said: Okay, Smart guy, put yourself to sleep and quickly left the room. I awoke from the anesthesia on the following Wednesday evening. In addition to the NINE small incisions from various attempts to perform the procedure of removing 18" of my diseased colon through a scope, I also had one 6" cut in my belly that began around my navel and continued to just above my groin. I also began experiencing severe shortness of breath. The staples were ripped out of my skin by the Butcher Surgeon two weeks later, but my breathing difficulties continued. After being examined by one doctor after another, I finally decided to be examined by The Mayo Clinic. Over a ten-day to 2 week period, I was examined by multiple physicians, underwent numerous tests and procedures and was finally ready for my Report Appointment. I would learn the results of all of the tests and procedures and hopefully have a clear diagnosis and prognosis. The verdict had come in. Diagnosis: Terminal COPD (Chronic Obstructive Pulmonary Disease Causation: Bacterial Pneumonia due to Malignant Hyperthermia caused by induction of Detrimental Anesthesia Prognosis: 5% chance of Five-Year Survival I then took my report to a highly regarded Pulmonologist for Follow-Up Care, but not before enrolling in Rabbinical School in New York City. I had, (since age ten) always wanted to be a Rabbi. It was now or never. On the advice of the Pulmonologist, I began taking Prednisone (a Steroid) that would open up my Bronchioles and make it easier to breathe. The normal dosage for a man who is 5'9" and weighs 150 pounds (before I got sick, I weighed 174 pounds, all muscle, by the way) is <100mg per day. My STARTING dose was 100mg THREE TIMES a DAY. the dosage was increased every few months for the following THREE YEARS, when, on Sunday, September 9, 2007, at the weight of 340 Pounds (the Steroids had been increased to 250mg Four Times a day), I collapsed and at Mayo Hospital, was intubated where my organs began failing. Two nights later, on the First Night of Rosh haShana, the Jewish New Year, and while being mechanically ventilated, I went into Full Blown Total System Failure, and suffered a Cardiac Arrest for 14 minutes, followed by a Coma of several weeks duration. During my Coma, I felt as if I was in a box. The box had four dirt walls and smelled like the Morning Dew. In the upper right corner of the box sat a red square with a white X inside of it. "If only I could click on that X, I might stop this program", I thought to myself, but I could not move; I could not stand; could not reach, and could not scream for help. I lay in this place crying out in fear for what seemed like days and weeks and months. Suddenly, my cries were replaced by Psalms. I was reciting Psalms, some of which I had never even read before! And the Psalms turned into Prayers; The Kol Nidre, chanted at the beginning of our Day of Atonement, Yom Kippur; every other prayer recited on this Holy of all Holy Days; the Prayers for the Sukkot Holidays that follow the next week and the Readings for every single Torah Portion of the year. I somehow knew them all. By heart. Without hesitation of memory and obviously without any text to look at. I kept reading and chanting day and night; night and day and resting in between. Really resting. Sleeping... until one day, I opened up my eyes to see my beautiful son Zac sitting at my side on my bed. Covering the holes in my throat and on the side of my neck, I managed to spit out "C'était le rêve de dix minutes le plus étrange que j'aie jamais eu"! I told my son that was the weirdest ten-minute dream that I have ever had in FRENCH, my first language and native tongue. He then told me that it had been over two months, and I was in a Hospice Facility. The night before, I had begun to breathe on my own a minute or so after being disconnected from the machines that had sustained my organs since September. A few days later I was wheeled to an ambulance outside to be transported to the truly amazing HealthSouth Rehabilitation Hospital in Scottsdale. The sun kissed my face as I felt like I was pulled up into a body of love. It spoke. In Hebrew: Don't worry, it said. "You and I are going to be okay". I spent the next six weeks learning to do things like eating and holding a pencil; how to shower and dress. I learned how to return to life. Six weeks after leaving HealthSouth, my dad died. In July 2018, my mom joined him. I have had many trials and tribulations over these last twelve years. A Stroke in 2012 took my ability to project my voice loudly; I've been hospitalized many times and know how very precious time is. I do not live for today, rather, I live for tomorrow. I do everything I can do today to help others, and pray that I am again awakened tomorrow to do more good. And if so, great! And if not; if G-d decides to take me tonight, I will hang out with my parents and loved ones forever. I win either way. President Roosevelt was right to believe in only fearing fear. Psalm 23 is even more so, as Faith follows all of us.
Funny my mom passed in 1991 as a 13 year old it was hard but she was much more then beauty. She was a fighter from the beginning and I will never be able to explain her impact. It shows you came from a strong famiy and I'm glad you had both a mom and dad because a lot of people don't. I pray your truth can make a difference
This is trying to scare us with more misinformation then actual information but thank you for giving us your reality. I like it a lot.and people just wash your hand like you should be doing anyway 😂
Great discussion, as well as some interesting numbers which I'm not sure are meant to calm us, or install even more fear. I have many of your same concerns. Just yesterday I scheduled a work trip to Miami for late next week, but am unsure if it will happen or not. And while i say or act like i'm not concerned, sub-consciously, i am quite sure it is weighing on my mind each time i cough, or sneeze, or feel "a little warm", or if someone around me does. One of the biggest fears i have is that with all of the media coverage and the additional testing becoming available, the numbers are sure to skyrocket, and this is going to really set some people off. Our country is going to go absolutely bonkers . We are all guilty of taking limited amounts of information and either talking about it like an expert, or completely overreacting. Here's hoping that the number stat to level out, and then drop. Lets hope that the American people can follow simple suggestions. Lets hope that countries from around the world can work together to come up with a viable plan to slow this train down. And last but not least, lets hope our politicians can come together to provide our country guidance as we all try to get through this. Lets hope they can forget about the presidential race for just a minute to remember what their job really is; to serve the American people. And now is their time to really step up and lead by example.
Lauren, like you I have to balance my fear and confusion. I work directly with the public and I have an immune system that is partially suppressed as a by product of treatment for Rheumatoid Arthritis. I fear for my Father the most as his body is much weaker than even mine. I visited the Cleveland Museum of Art on Sunday just to learn three people were positively diagnosed on Monday in Cuyahoga county. You aren't alone in that fear. I think that we must turn to hope to keep us in this trying time. We have to...
Terry, As a man who has lived and breathed baseball, your letter was an absolute joy for me to read. What young boy wouldn't want to be in the clubhouse with his Dad? During your time as manager I've been to quite a few games in Cleveland. None though were as special as July 12th 2014. That was the day I celebrated my 30th birthday. Though the day centered around my birthday it saw me doing something for someone else. It was the day I took my Father to the very first professional sports game in his 59 years of life at the time. It was so touching the certificate that he got from the wonderful folks at Guest Services. And although the home team lost to the White Sox that day, it will always remain one of the best days in my heart. Letters like yours only serve to renew my love for the game of baseball. Thanks for sharing it with the little boy still inside of me wanting to throw that 0-2 curveball to the best hitter in the league.
[…] enough, in the email was your letter to your late father, former NBA basketball star Anthony Mason, talking about your struggles after his death. You wrote […]
Sweet Lauren, I agree completely with the promise that Brian asked you to make. Frankly, it is the only way that I know to love; totally, completely, wholly and unconditionally. You deserve nothing less, nor does your future love.
Wow. What a truly moving and powerful story. We often take for granted the small gifts we give each other just by being present. I'm sad for the heartache. I'm glad you stayed and became. Who knows what little girl or boy will be attributing their life's purpose to some kindness you shared. Peace and Sunshine
You’re welcome Lauren looking forward to all the future stories :)
Thank you Tony. I appreciate all your support.
Thank you Tony. I appreciate all your support.
I’m sorry to hear about Brian but he was right you are too beautiful to not receive roses Lauren:)
[…] Here is why you need to stop being nice and start being loud […]
Thanks for this! So what movie set did you get on?
So nice Roger <3
Pat, Your letter touched me in a very profound way. It left me in tears in the middle of my work day. It made me want to share something with you. On a July morning in 2007 a police officer answered a 911 call I had made when my Mother went into cardiac arrest. Between that officer, my best friend and the fire fighters who showed up minutes later they were able to restart her heart, however at the hospital she passed away an hour later. At the end of his shift that officer stopped by my home to check on the situation and cried when I told him the unfortunate news I received only 4 hours prior. He tried to apologize to me. I looked at the anguish in his eyes and asked him directly what for? He described the ways he felt sorry. What I want to leave you with was my reply to him. I told him he had nothing to be sorry for because he answered the call in what was the darkest moment in my life. I told him that he was a hero regardless because it takes a special person to answer calls like that. You are a hero to people Pat. No one can ever take that away from you. I understand the process you're going through as I've been there myself and like you I still struggle with it when no one is looking. You aren't alone in this. I hope your healing process continues on and you can regain the happiness in this beautiful life. You'll always be a hero to those people, because you were there when the call came Best wishes Roger Chamberlain
Ruth, your letter moved me to tears. Once upon a time I was very closed off about the LGBT community but over a course of several years, I turned my fear into understanding and I actively stand with the community for their equal rights because it is the right thing to do.