This is my own story. My experience. My take.
(Endo)metriosis, like any disease, is never just about the disease itself, but the havoc it wreaks on your life. It is the fact that “nothing lasts forever”….except for this disease, incurable and terrorizing. And for those of you who do not experience severe endo, I would never wish it upon you. It is also most likely that if you are reading this, then you do have serious endo and have asked, “who can I trust?…with my disease, my pain, my health, my life?” After having seen a plethora of doctors, even to this day, I can easily say that bedside manner is overrated. I have had sweet, smiling faces and follow up phone calls from MDs who’ve failed to admit their treatments have simply not worked. They talk a lot but produce little results. I have experienced money-hounding MDs who couldn’t care less about your well being only to fake it with a tie and a calming voice where passive aggressive accusations lie hidden beneath. And because endo is an invisible illness, you might be called a liar, a faker, an addict to painkillers, and these hurtful accusations will bring you to your knees. Your pain is real, and no one can tell you else wise. You might become tired of defending yourself at the end of the time. The world is not kind sometimes. These accusations will sting because you know who you really are, and this is why you must precious those doctors who do believe you, even if it is only giving you the benefit of the doubt.
I recall when I met Dr.Seckin for the first time, his gruff exterior easily intimidated me. (Remember – bedside manner is overrated). I’d met with another specialist covered in sugar – she talked quite a bit, but never believed my case (this wasn’t explicitly said. It was my takeaway). To make this just a bit shorter, you must trust your instinct. There is often a tradition in weddings that is a mixing of sand to represent togetherness. My own instinct, despite the initial lack of “warm and fuzzy” in Seckin’s office, forced me to pry my heart, my brain, my pain in half and empty itself of sand straight into Dr.Seckin’s hands.
This burden is heavy. Dare to lose a handful of sand.
Consult whom you feel you trust. Meet Dr.Tamer Seckin: In a labyrinth of many doors, you would be wrong to choose the door with heavy décor on it. If fairy tales have not taught you that as a child, then let me teach you now: The door that is simply a door, transparent, perhaps more humble…is the door you must venture to step into, for the door with sounds of revelation and peaks of light is simply an illusion. Ask yourself if you prioritize inexperience with a personality of singing birds, bells and whistles to hide this, or if you prioritize the best hands, expert hands…one that may not always explain everything to your liking, but hands that you can hold and that will not fail you. This is trust. With your best interest in Seckin’s hands, try your utmost (and I know, I know how difficult this is), to let the questions go, and to find peace…for you truly do not know how often he thinks of you and your case…maybe only at work, perhaps while he plays tennis vigorously as if it was the Wimbledon opening, or over dinner and a glass of wine. Trust that he has answered your questions in his mind – do not debate it, do not fret over it. Remove them from your head.
Before meeting Dr.Tamer Seckin:
I had had two laparoscopic surgeries, one of which was an emergency surgery. Both were done by an OBGYN who I still, to this day, truly love and respect. This was back in 2012. I recalled sitting on the patient examination bed in her office after recovering from my first surgery. I’ll never forget my arms tucked near my body and my hands, palm down, supporting myself in a slouched position. She asked, “Have you ever heard of endometriosis?” That was beginning, and since I’d never heard of it, I never thought much of it. I was unaware of its damaging capabilities, its life changing terror, its seriousness. I shrugged this off as much as I would a pimple on my forehead. Here today, gone tomorrow. Whatever. I carried on.
The second surgery happened less than a year later. Cramping pains, the inability to lift things, to work, to walk my dog, the struggle to simply walk at all. I felt the pain with every bump in the road the taxi crossed, yet I was unable to walk down subway stairs. My second surgery was much like the first: I thought it was the last.
One month after my second surgery, my (ex) husband received his permanent green card from our marriage and swiftly broke up with me. It had been four years of marriage, and a fake one, unbeknownst to me. I left promptly, finding a small place in midtown and moving all of my things within a week. Our mutual friends had altogether decided to stop communication with both of us, although he fared much better than I. Still on the mend, I distinctly remember standing on the fire escape, ready to jump. I was horribly depressed and felt like I had lost everything. Meanwhile, my ex was playing soccer happily with his posse of Greek friends. I struggled nearly the entire year. I tried in every way to numb myself with reckless behavior. The pain returned relatively swiftly after my second surgery, and it was at this time that my OBGYN sat me down once again and said that she’d exhausted her skills. That I needed a specialist. I didn’t understand. I still had not registered the severity. It took a fair amount of coaxing for me to seek help elsewhere, to seek out her referral…to see Dr.Seckin. And I did.
Though a man of little words, it is easy (if you are a people watcher, like myself. If you have been cursed with hypersensitivity to human emotion…) that his mind is ticking, working overtime like a clock with arms spinning faster than they should be. In all honesty, I do not believe that Seckin believed my pain or me. I appeared at our first appointment spaced out, disheveled to a certain extent…a wild overdone, sad woman attempting to hide it all with a little bit of makeup product. I do not blame him, I was not a fan of myself either. Nonetheless, he had given me the benefit of the doubt. Without saying so, he took a chance on believing my suffering…before it showed up on MRIs, CT scans, sonograms, ultrasounds, blood tests, urine tests, endoscopies etc.
What Seckin hadn’t known, and what the world has never known, is that I was at that moment, entirely alone. Depressed out of my mind coupled with the jerking anxiety I had…I tried desperately to find love in all the wrong places. I dated constantly, using painkillers to mask my body that turned against me. I was afraid to tell men about my condition. I was more afraid of my clients finding out. I was entirely ashamed of my mind, my body, my soul. I was suicidal. I absent-mindedly brought myself into abusive and dangerous relationships simply to feel like I was not alone. Some were sexually abusive, some were verbally abusive. In one case, I attended a former boyfriend’s Thanksgiving dinner with his family. He’d often scream at me when I was in pain that I should “fucking go to the emergency and stop calling me.” He lived at his parents’ house and used his obsession with porn to try and inflict his sick fantasies onto me. There was often a feeling of helplessness, and my mind went to a darker, and darker place with each day. It was then that I realized I was suffering so, so much. Mentally. Physically. Sexually. After longer than it should have taken me, I knew I had to extract myself from this relationship before it escalated even further. I broke up with him the day after Thanksgiving. I left, knowing that I would be alone again. I hired a dog walker. I tried, desperately, to fight the thoughts of death. I tried to work, and at some points failed. I left early from photo shoots, and though I produced some of the greatest work I’ll ever have made, I received heartbreaking criticism and angry voices, whose undertones told me that their wedding day took precedence over my health. I wanted to scream. Don’t you understand I am bent over in pain? Don’t you understand that I can only function if I take something for the pain and that is why I am here in the first place? Don’t you see me? I am not okay. And yet, I couldn’t explain that I was unhealthy. I did not have the confidence nor the voice to defend myself. The sicker I became, the more jobs I lost. All this was devastating. I retreated inside myself. My mother was the only one who’d stayed beside me. By this time I’d lost all of my siblings. Granted they are alive and (some of them) are well, it seems they developed their own life. My brother suffers mentally. He is not well. And I cannot reach out to him because I know it would be disastrous. To this day, they do not know about my disease or condition. My father has been out of my life since day one. My only friend was in Tel Aviv, for good.
What Seckin hadn’t known was that his surgical tools would mend my body but also help mend my mind.
The thing about Endo is that it strips you of your sex, of your confidence, of your femininity. It has been implied (not by Seckin) that I am, more or less, infertile. And while I do not wish to have children, there is heavy mourning inside. There is a weighted mourning that my body has failed me, and that this should have been my choice, not this disease’s choice. This body has turned against me in the ugliest way possible. My mother expresses that taking a pregnancy test is a waste of money when my period doesn’t come. I have to imagine a different life for myself. Sometimes I can’t, and all I want to do is curl up. I think not directly of death, but of a way to no longer feel this pain.
The thing about Endo is that it pulls the wrong piece out in the game of Jenga – and all you can do is sit there, watching the world around you fall apart. And while there are better days than other, it is a disease widely misunderstood. It has me in bed around 8 pm with referred pain traveling and shocking my insides. It has me in bed sobbing every other night. It grips my throat and at times, makes me wish this were terminal so that there would be an end. It threatens to destroy the business I so dearly love and built. It tears away the feeling that I am pretty…that I am SHE, and leaves me in oversized shirts that don’t hurt my pelvis. It has me fighting for my life, each and every single day. I miss feeling pretty.
You are damned if you do, and you are damned if you don’t. This invisible monster makes you look healthy while it eats away your innards. People are all too quick to judge, and if you were to put on makeup…you’re clearly healthy. If not, you have let yourself go. A social media photo of you having a swell time seems to indicate that you are well. What they don’t know is that you could be back in bed 15 minutes later. And that a day of activity, whether personal or work, could result in 3 following days of pain and recovery…in bed.
Though unsaid, all of these things…all of these struggles are ones in which I believe Seckin knows. As a man. As someone who is able to miraculously empathize with a type of hurt that only a woman could feel. Behind his few words. Behind his knowing hands and his fixed eyes. Behind his all too straightforward attitude. And if he did not like me when we met, it is because I did not like myself (an understatement). Similarly to how I know I DO excel at my job, Seckin does as well. And that confidence is a main attraction. Beyond the basics of said job, what Seckin may not realize is that it is not simply going under the knife to fix a disease, but it is going under meticulous hands and eyes to sew back together a life you felt had fallen apart.
What Seckin may forget in his endless hours of work is that this isn’t medicine for the flu, but a stairway out of a dark well and a message in a bottle that says in unwritten words, “trust (me)” And so you must. Because that is hope. And if you are like me – controlling and nervous…stuttering and unsure, letting go is a necessity.
What Seckin offers is a choice – an active choice by you, the patience, the victim, to want to be better and to mend the life you felt crash and burn….whether you are married with 2 children already, whether you are divorced, alone, and confused by your own existence, whether you are a teenager who can only sometimes make it to classes because of your pain, or whether you are tired. Just tired of fighting. Tired of your back breaking. Your pelvis throbbing 24/7. The referred pain. The painkillers that you need but that warp your mind. Your mind melting…wearing thin.
I recall on better days, walking up 2nd avenue late at night with my dog (she doesn’t pull at night. I’m not so in danger of being hurt). The fratty, bratty boys (I use “boys” purposefully” would have their rowdy, trashy selves fill the outside of the bar up on 42nd near the Irish pub. I walked by. I would get catcalled. But I retreated so far into my head, into the music that blasted….because we all have to find ways to survive and to fight the demons.
No (one) is an island. And if you feel you are, lie down and wait. Wait until the pain settles itself just a centimeter. And with the little strength you have and the voice that seems wavering, reach for help in any way you can. Have the courage, in an oversized shirt, in an empire waist dress that puts no pressure on your belly, to sit in the waiting room…even if you are alone. And find solace in step one. I am not one to lie. Step one is one of many more steps, harder, more frustrating, more intimidating. But if you’ve gotten to step one, take a breath. Save your energy. And when you are ready, go to step two.
And, when you’ve made it far enough, you will be lying with smiling faces around you that you can see behind the facemasks. Your pain will be relieved through the IV. And before you can count back to 7, the last thing you will see is Dr.Seckin’s face…and I can promise you that that is enough relief before you’re out and on your way.
You are tired. You are tired of defending yourself. From the technology that says nothing is wrong with you. From the pain. From the lethargy. From the back breaking heart aching creature that lives inside of you. You are so exhausted that you walk to the coffee machine bumping into walls along the way. And that’s okay. I applaud you for combing your hair. I applaud you for making it to the coffee machine. I applaud you for standing. For trying.
This is incredibly difficult to say, since I myself often don’t believe it, but for you…suffering…for you…terrified…I believe you. Seckin believes you. And things will get better, should you let them.
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