survivingunderwater

[survivingunderwater]

How Chronic Pain Taught me to Breathe Underwater

I’ve wanted to share my story for a long time. It is a small snapshot of my life with a pelvic nerve disorder that causes severe, debilitating chronic pain and has no known pathology or treatment. I realize this a long post, but you know what? People write 509 page  cookbooks about the types of flour to use baking. 

This story is not sexy, but it is real. 

It would mean the world to me if you could share this, so that together, we can promote awareness for a silent condition, and remind ourselves to never judge a book by its cover.

Read time: 20 minutes

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For the last 13 years of my life, I have been held under the water and told to learn how to breathe.

Ten years ago, I learned that I would never have sex, and that an intimate life would be nearly impossible.

I learned that my condition would gradually worsen. I learned that over time, I would not be able to tolerate the light touch of clothing, that I’d lose control of my bladder, and that something as simple as sitting down would become unbearable. I was told that I likely couldn’t have children, a family, or even leave the house for long periods of time without complications. Physical activity would be cumbersome. I was told to give up the activities that I loved so fondly because it was further damaging a condition that was irreversible. Doctors foreshadowed that in the coming years, my nerves would become so sensitive that my skin would feel like fire. As the pain worsened, I would likely need to take antidepressants and seizure medications to pacify the inflamed nerve endings….I would be relegated to a life of loose clothes, disability permits, abstinence, and incontinence.

I learned that at best, I would live a life muted by medication. I learned that at worst, I would live a life bound to a bed, consumed by chronic pain. I could kiss goodbye to ever knowing intimate love in the way most people like to characterize it.

For a long time, I didn't even know I had a condition. I just knew that something in my body was wrong.

When I was 11 years old, I reported experiencing vaginal pain for the first time.

When I was 13, I went to a gynecologist, who told me that the pain was entirely in my head. Thinking that unregulated hormones were the source of my complaints, I was prescribed the birth control pill. I didn’t think much about it, and I assumed this would solve my problem.

When I was 15, I entered into my first real relationship. I was confused why I felt sharp, stabbing vaginal pains from something as simple as light touch, so I returned to the gynecologist. I thought this was supposed to be a pleasurable part of life. I was also confused as to why - unlike my friends - tampons were impossible to use. I asked them to examine me externally only, and we agreed that we would talk through any “next steps.”

Without warning, the gynecologist entered my vagina. The pain was so excruciating that I suddenly couldn’t see or hear. I started shaking uncontrollably and fainted. When I opened my eyes again, I screamed and pleaded for her to stop. I’ll always remember the look on her face as she rolled her eyes… as if I were overreacting, that I was weak, that I was pathetic. Was the pain actually in my head? When she stopped her exam, I could not walk.

Over the next year, I saw a number of gynecologists -- each with a different opinion on the cause of my pain.

Some said it was an injury from years of horseback riding. Some said it was a hormonal imbalance. Others said it was an unexplained genetic anomaly. Some doctors said it was possible that this was the aftermath of repressed sexual abuse. This terrified me. My mind ran wild as I imagined the possibility of my brain and body repressing a trauma too young for me to remember, and to manifest in the present as crippling nerve pain. I never recalled any abuse.

But most doctors, however, kept telling me I was imagining my pain. Their rationale: I was attempting to experience pleasure at too young of an age, and my “paranoia” about sex created muscular pain.

There was one commonality among all of my diagnoses. Whatever I was experiencing, all doctors agreed that there was no known pathology… and no cure.

When I was 16, I had a glimmer of hope. In hopes of solving the problem, doctors put me through a surgery they assumed would help. I spent a month bleeding and recovering, only to realize too late that the surgery to fix my pain had only made it worse. At this point, my nerves were damaged so badly that my pain receptors were always turned "on." Cutting through my damaged tissues and surgically stitching them back together only exacerbated the problem.

I learned that sometimes, healthcare professionals don’t know what they are doing, and adults aren’t always “right.” I became my own health advocate.

At 17, I had a breakthrough. My mom and I found a new team of doctors who validated that in fact, the pain was not in my head. It was not a hormonal imbalance, and it was not repressed sexual abuse. I was diagnosed with vulvar vestibulitis, and I would later learn I had one of the worst forms.

This is a condition where nerve endings in the vulva - and specifically, pain receptors - are permanently “turned on”. I finally felt relief knowing that my pain was validated. As a result, I thought I had a clear pathway for treatment.

I started pelvic floor physical therapy to help relax the muscles around the nerves. I was prescribed antidepressants and seizure medicine, which I refused to take. I occasionally took pain medications.

I quickly realized how women’s issues were severely undermined in healthcare. Insurance only covered a portion of my medical bills. My mother and I had to submit a detailed grievance to the Department of Public Health in order to overturn my insurance denial for continued PT, since our insurance had cancelled my coverage after a small number of sessions. Our letter was luckily a success, and a small victory amidst this journey.

I started to accept my position in life. I began practicing yoga and realized the importance of presence and perspective. I decided that maybe a life with no tampons, no sex, and no kids wasn’t so bad. 

Everyone who knew me, knew me as a happy young woman. 

I was starting to breathe underwater.

When I was 18, I realized that intimacy would continue to be a traumatic and nauseating experience, and that sex would absolutely never be part of my life.

I realized that there were unempathetic people who would try to make me feel worthless about this. 

I also learned there were people who would love me no matter what, and that who I surrounded myself with was entirely my own choice.

When I was 19, I developed anxiety from having so much constant pain, not knowing where or why it was happening, never knowing when my pain would flare, unable to escape it for weeks at a time.

For unknown reasons, I also started losing feelings in my arms and legs, which became fully numb. This lasted for a full year, and I stopped exercising. The loss of feeling scared me so much that my anxiety increased. The anxiety led to intense panic attacks, which led to more panic attacks because I was so afraid of having another panic attack (LOL). I personally thought this was brilliant that my mind went so far. I later talked to a therapist who said that I had developed this thing called panic disorder.

Eventually, I accepted this part of my life, and I realized that those who struggle with mental health truly know what it is like to suffer in silence.

When I was 20, I spent 5 months studying abroad throughout Africa and Asia, staying with local families and learning about the beauty of different cultures. Amidst the highs, I also saw starving adults breast feeding off of each other and dead bodies in the road. I met women who had experienced female genital mutilation, who almost bled to death from having their labia and clitoris mutilated by a dirty blade on the floor of a hut. The experience was so raw and unfiltered that I felt ashamed of myself for ever complaining about my pain.

I realized I had so much left to learn in life.

But with each step forward in self discovery, I felt like I took two steps back in my physical progress.

By 21, my pain took a drastic turn for the worse. I was unable to put on clothing. I threw away all of my jeans. On good days, I wore sweatpants and loose leggings. On bad days, I didn’t leave my bed, and I sat there all day with an ice pack, terrified of peeing. I threw out all of my underwear, as I was no longer able to tolerate the touch of it against my skin, which now felt like fire in an open wound.

Whenever I felt “turned on” by someone, I experienced searing clitoral and vaginal pain. It felt like an unfair punishment, and I was unsuccessful at suppressing my feelings. Women are supposed to feel strong in this sector of life, but I felt beyond traumatized. As I continued to see friends enter into relationships and have healthy, pleasurable sex lives, I could not even wipe myself after the using the bathroom due to excruciating, burning vaginal pain that never gave me a break.

By 22, I obtained a disability permit that enabled me to finish college by completing most of my coursework from my bed. On the few days that I went to class, I stood up in the back of the room, since I was in too much pain to sit.

That year, I was also diagnosed with interstitial cystitis, which causes bladder urgency and enhanced clitoral and urethral pain. The combination with vulvar vestibulitis became unbearable.

I did what anyone else in my position would do.  I found peace through dry, and often dark, humor.  

I remember my senior year as the year that I sat with an icepack on my vagina, taught myself my coursework, and barely graduated college. I also remember moments of roaring laughter. My college roommate and I made endless jokes about my vagina. We spoke in thick Southern accents and mocked college boys’ sexist comments. My roommate even dressed commando in baggy pants to make me feel less alone. We blasted Lily Allen songs, named all the cockroaches in our apartment, and made a hysterical music video about a territorial wild cat that we spontaneously adopted.

I learned that laughing at yourself adds years to your life.    On my way home from college, I was patted down at the airport. I told the TSA agent that I had vaginal pain, and that if she passed over that area, she could not use much pressure. She told me if she could not touch me, then I could not fly. I asked her to be considerate of my condition. She was not. I was too embarrassed to tell her what she had done. The pain was so unbearable that I cried the whole plane ride home and had another flare up that lasted for weeks.

By 23, I was living at home with my parents. I stopped working, and was sedentary for a full year. I sought help from doctors who didn’t have answers. I couldn't sleep through the night for months. I left the house occasionally for restorative yoga, but I could not do much, and walking and wearing clothing was completely unbearable. To this day, I credit those yoga teachers, my hilarious and supportive brother, and Always Sunny in Philadelphia for why I am still alive. For someone as active as me, being sedentary and in pain was the worst form of torture, and I didn't know if it would ever end. I was told it never would.

I spent most of my time sitting in a chair or in my bed with an ice pack. Once per day, I walked like a penguin up and down my parent’s driveway to try to exercise, but it was painful and all I felt was embarrassment.

This is where, for the first time, I began to feel truly hopeless.

Every aspect of my life was controlled by a condition to which I could not control.

Every time I started to breathe underwater, I felt I was pushed further into darkness with even more limitations.

I was pushed to my limit, and I hit the bottom very hard. 

I often thought about ending my life. I thought about how this would happen, and the aftermath. I begged to have all painful parts of my body surgically removed. I felt searing guilt as my parents uprooted their lives to dig thousands of dollars into their savings to afford my medical bills, treatments, surgical consults, gynecology appointments, and physical therapy.

...But even at the bottom, I found slow inhales and exhales.

I once again realized the only way to change my suffering was to change my outlook. I had and still have pain, but I am not identified as my pain. I decided to pour my energy into seeking love and adventure through creative, dynamic ways. My pain gave me a strength and fearlessness that was and is indescribable.

I wanted to feel all emotions and forms of life whether they were good or bad. I was completely unafraid of death.

I wanted to learn who I was inside and out and give love and beauty to everyone I met on a deeper level than sex and what society perceives as “intimacy.” 

I wanted to learn how to connect, truly connect, with people and express my sexuality in open and loving ways.

I wanted to learn secrets from people around the world in the worst conditions. I found that these people were (as stereotypical as it sounds) the happiest people,

 and that limitation is the biggest factor in creativity, invention, and success.

I would later proudly say that I too was more than happy, I was living in ecstasy. My entire life was filtered in technicolor.

My life is painful, but it is rich.

I invented clothing and found clothing that I could tolerate and still leave the house in. I found the right numbing creams and formulas to tolerate my day. I experimented with a million different diets. I went to PT regularly again and specialists who started a magnetic treatment that worked wonders, even if temporarily. I did acupuncture and regular pain management therapy. I obtained a medical marijuana card, and the CBD helped relax my muscles and loosen tension around the nerves. (Then one day, I accidentally overdosed on gummy bears, and I heard the sounds my brain makes when it has thoughts. I sat on the couch spitting out paleo bread, as one does, and I forgot when to stop chewing and start swallowing my food. Of everything I had survived until that point, this was the night that I was convinced I would die, and unfortunately at the hands of a gummy bear. Though marijuana is a miracle for some, I decided it was not my thing. I never did it again).

I used the money I had saved from working in college and teaching yoga to travel on a pathetic budget. I went skydiving and bungee jumping. I trekked up a volcano in 100 degree heat in Nicaragua, in baggy clothes, one step at a time, even though it killed me and I had a flare up afterwards. I traveled through West Africa, Southeast Asia, and Latin America. I couchsurfed for months in Europe, off of several hundred dollars. I got stuck in horrible situations where I was the only person who could get myself out, and I did. I was stalked by a man who screamed what he wanted to do with me when he finally found me alone. I was harassed. I was lost at night in the woods with nothing but a motorbike and a dead phone in the middle of Myanmar.

I slept on floors and couches and had days where I had to do absolutely nothing and was stalled by my condition. 

I met travelers who flew through monuments at record speed with massive cameras, sleeping with every local or nomad they met. But mostly, I met travelers like me, slowly making their way through untouched corners of the world. I met people who experienced unfortunate or crazy events and illnesses very young in life, and who also found a richness through cultivating perspective by traveling with a tiny backpack and a questionable budget.

I had days that were beautiful.

I learned that everything in life is temporary. Everything. 

When I was in the Czech Republic, I had the most romantic evening with a sexy Colombian man in the old square in Prague. We went drink for drink with fresh, minty mojitos and bounced life stories off of each other in a rowdy bar, where the power went out three times. We stayed out until 5 in the morning, stumbling across the Charles Bridge together, making out at every brick wall. The connection and pulse was palpable. He introduced me to something that would later change my life: salsa dancing. He wrote and recorded a song for me and sent it to me later. I fondly replay our brief and special night together in my head.

Despite my condition, I dated frequently, though I’ve never felt compelled to be in a relationship, because I don’t really feel like anyone truly understands me, and I have always been very content and happy “on my own.” A life free of modern day relationships has been anything but lonely, anything but void, and NOT AT ALL what the doctors told me my life would be living with this condition.

Maybe I cannot have sex, or experience stereotypical pleasure, but I truly believe that my sex life is one of confidence, depth, and beauty. I learned how to confidently communicate about sex and express my likes and dislikes, what I could and could not do, when I was as young as 16. I learned how to be creative in bed. I learned that there are infinite ways to be intimate with someone. I learned that intimacy must always encompass mindful intention and passion, whether it is for two hours, a one night stand, or a lifetime. I learned that “sex” without intention is scary, dull, and abusive. I learned that many men don’t know what to do if you eliminate stereotypical sex from the equation, and they think good sex embodies very minimal foreplay. I learned that this is so boring that I would rather answer my work emails.

I dated and hooked up with men. I dated and hooked up with women. I found myself attracted to people younger than me and twice my age. I quickly learned that I loved the vibe and core of who someone is more than anything else. Superficial things didn’t influence my attraction and desire for someone. I craved (and still crave) people who can feel life deeply, who can understand me and I can understand him or her. I learned that humor, empathy, understanding, and most importantly, sarcasm, were absolutely irresistible. I learned that I have a weakness for accents on men, asses on women, and all French people in general.

When I was 24, I found ways to further manage my pain: clothes that were even more tolerable and made me feel beautiful (not these massive sweatpants anymore!), creams that managed my pain, soaps that didn’t irritate me, a diet that was helpful, regular alternative treatments, maya abdominal therapy for my interstitial cystitis, and a solid physical therapy regimen. My pain was not improving, but it wasn’t getting worse. I moved to San Francisco with my brother, and started a steady job.

I also decided to let go of my fear of physical activity. I would take it easy and try something aside from light yoga and penguin hobbling on my parent’s driveway. The thing that I tried was salsa dancing.

I am not going to get into details about the number of items that need to “go right” for me to make it through a night of dancing without pain. 

Everything from my clothing choice, creams, stretches, and drink choice must all fall in the perfect equation. There are many nights where I reluctantly skip.

That being said, I wholeheartedly believe that when I found dancing, I found the love of my life.

Salsa gave me a space where I could act out my sexuality in safety. Where I could connect and love my partner in that moment, feel the music deep in my bones, and completely let go. As a follow, I could stop thinking entirely and put my brain on pause. I re-learned to trust men after many bad experiences and violations. I learned to surrender my body and soul on the dance floor, and I never cared what I looked like.

Salsa is a space reserved for old souls. There are no phones to use as a crutch, no photos to take so you can post on social media about the “great time” you’re all having. It is a space where I could truly be a woman, and have an incredibly intimate dance with someone 6 songs in a row and know that our love and connection stays on the dance floor only (most of the time. LOL.). Salsa is in every sense my therapy. It’s my drive to want to heal my body, so that I can dance every day of the week and not have all these ridiculous limitations.

I often cry of happiness when I come home from a night of dancing. 

After all of these years of pain, I am so grateful to move my legs that are sometimes numb! I am so grateful to connect with my partner. I am so grateful to feel sensual, beautiful, and loved. It changed my life, and the gratitude never ends.

Some realities that are important:

1. Pain in an area of the body that is intended to evoke immense pleasure is a constant mental test. It makes other mountains feel like small hills. Nothing compares. Not my worst fever from contracting chikungunya in Haiti. Not my worst breakup. Not the time I was evicted from my apartment, or punched in the face by a homeless man. Or the 3 times I have totaled vehicles in car accidents. Not the times I have disclosed my condition to men and, without apology, acknowledgement of my pain, or empathy, they have expressed that they are no longer interested and that they are “sorely disappointed” that they didn’t receive what they were expecting. The frequency of these interactions has made me briefly lose faith in humanity, though it has never torn at my confidence. Not surprisingly, I never experienced this reaction from women. I was only met with compassion.

2. This condition has made me realize that feminism is more important now than ever before, and I have never been so proud to be a woman.

When I was in middle school, boys teased me and told me that my acne made it look like I had bruises all over my face.

 Now I am older and that is gone, and instead I am treated as a walking sex object. When do women win? I have been grabbed, harassed, threatened, abused, and stalked.

I seldom trust being alone with a man.

Many male doctors told me the pain was entirely in my head from the start. I was told to “toughen” up. I do wonder what would have happened if a man had reported the same levels of penile pain, and if his complaints would have been taken seriously the first time.

I am a woman and am therefore expected to be a sweetheart by day and a freak in the sheets by night. I am not going to feel any less feminine or sensual because I cannot have stereotypical sex.  I am so proud to be a woman and to fight for other women in a world that still roots so strongly against us, especially in healthcare. So here I am, telling my story, in hopes that it will encourage the other “Allys” out there to tell their stories, too. “When sleeping women wake, mountains move.”  

3. I often fight stereotypes of who people “think I am” versus who I actually am. Everyone struggles with this, pain or no pain. It is one of the hurdles of being human.

I am often passed off as a blonde woman who is easily impressed, bubbly, and spacy. This feedback is quite upsetting. I can’t escape my pain. Any conversation I have with someone takes up half my brain, while the other half is trying to shift my weight or body in a way that could potentially result in less pain. This does not translate to gullible, insecure blonde person.

This translates to a strong woman who wakes up every day to the biggest fight of her life.

4. Listening to modern day complaints is exhausting. 

Complaining to me about your sex life is like me complaining about my shoes to a man who has no feet.

It is true that everyone experiences various levels of life, but it is also true that people should be mindful about what they choose to complain about or dwell on. Life is short.

5. This story is not meant to glorify pain. I have had more “low quality” days than “high quality” days in my life, and this reality sometimes kills me.  I don’t want to be in pain anymore. I don’t want to experience throbbing clitoral pain if my leggings accidentally touch my skin. Three months ago, my entire body went numb and I could not feel my legs for three weeks. I stopped dancing and worked from home a lot. I took painkillers and eventually my feeling came back.

Last week, I had so much pain that I vomited, then fainted and hit my head on the mirror. My roommate found me on the floor when she heard the thud.

This is not a normal life, but it is a life that has taught me more about living than most.

6. This isn’t a romantic story. This is not a sexy story. But it’s a real one. When I look at my life, sometimes I wonder why I am so happy all the time. It is almost annoying, and people have said that I annoy them because of how much I smile. I technically have so much to be upset about, if that’s how you want to look at it. People pity me and say that I deserve to wake up and put on a pair of underwear, and walk around without feeling stabbing pain. That I deserve to have sex and make little mini Allys one day.

They say that I deserve to experience the full spectrum of life, that I deserve love and happiness.

What is so ironic is that I more than experience the full spectrum of life, and in a way, I often pity the people who tell me this, because I feel they are missing out on so much in this world. My entire life is filtered in technicolor.

When I am happy, I am euphorically happy, perhaps because of my journey with pain.

Maybe a bizarre part of me realizes: the only way to feel ecstasy from putting two feet on the ground and standing up in the morning, is to to be sedentary with numb legs for a full year.

What if the only way to uncontrollably cry of gratitude from something as simple as 3 minutes on the dance floor is if you know what it is like to not walk at all?

What if the only way to feel complete peace is to have 7 panic attacks in a row until you end up in the ER?

What if the only reason I feel so alive is because of the year I fantasized about gluing the pedal to the floor of my car and driving straight into a wall until there were silence?

What if the steamiest sex of your life isn't through touch.

What if the piercingly deep intimacy, romance, and connections I've had with others isn't possible for people without pain?

What if breathing air feels lifeless?

I was never told that 13 years under water is where you learn, feel, and evolve into what it means to be a loving, passionate, and soulful human being.

I was never told that the darkest part of the ocean is where you learn to take your deepest breath.

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We live in an ironic world. People often know more about the Kardashians than they do about Malala Yousafzai. They celebrate and photograph weddings and their newborn children, but you never see professional photos taken of those who survive terminal illnesses. Who determines what is “celebration” worthy?

I want to celebrate people in the middle of the fight, not the people at the end.

I have always wanted to honor my journey with pain: my sexuality, trauma, freedom. My tenacity and power in being a woman. I’ve never had professional photos taken until one month ago, when Andrea Padilla fulfilled a dream of celebrating this journey through a boudoir and nude photoshoot. I did this photoshoot to show the rawest form of who I am in this moment of my life (we had our tricks so that I could tolerate the pain from lingerie ;)). I did not smile. This is about honoring courage, and carrying this strength with me into 2018. If I were hobbling like a penguin two years ago and spent most of my time in bed, and today I am dancing... who knows? I don’t know what can happen in the future. My life can turn in any direction at any point, and I am here to soak up each moment and learn with every step. 

My dream now is to dance salsa on the world cup stage. Life is unpredictable, but it is also boundless.

THANK YOU:

To my amazing brother, Robby: Thank you for keeping me afloat, making me laugh, saving my life and then adding years to it, spending months sleeping on the couch to take care of me, and being there for me through thick and thin, even when I gave you so many reasons not to be there. I love you more than anything in the entire world and would be nowhere near who I am today without you. You make me a better person every day and laughing together makes life beyond worth living.

Sue: Thank you so much for your prairie dog driving skills to take me to the doctors, even though you took out a tree one time and we’ve had to leave many notes on people’s doors from destroying their bumpers in the hospital parking lot with your Denali. Thanks for never giving up on me. Thanks for your endless excel sheets documenting my symptoms and calling doctors all over the world. Thanks for putting your life on hold for me. Thanks for being one of the few people who believed me from the beginning. I would never have been properly diagnosed without you.    

Dad: Thank you for sharing many poisonous moscow mules with me when in a crisis. Thank you for believing me, and for believing IN me. Thanks for listening to my TMI stories. There is no way I can ever repay you for the way you have put my health first, but I hope to make you proud.