My Endo Journey Pt 4

With my second surgery we learned the lesions regrew on the back of my bladder, my ovaries were covered in scar tissue and more lesions were speckled around. The disease is progressive and will just keep getting worse. No wonder it felt like a knife was in my back, the spots were literally compressing my nerves at the base of my spine. 

After graduation, I finished my internship at a casting agency and was hired as the retail manager at Broadway Dance Center. They were really great at being flexible for auditions and taking class from their incredible teachers. You could be standing next to Bebe Neuwirth at the ballet barre, and it would be just a regular Tuesday morning. I took Frank Hatchet's jazz class nearly every day - being one of his chosen assistants to demonstrate combos - it was a big deal in our world. He was so kind and uplifting. He was tough too but in the best way. I assisted their Radio City Rockette experience at Radio City Music Hall - teaching young dancers the routines and getting to step out on that incredible stage regularly. I must've auditioned for the Rockettes half a dozen times; going thru 10 rounds and getting cut one round before casting. We'd be there for hours watching thousands walk right out the door each round. Every time I would get so close to landing it. I helped develop their student visa program that brought dancers from all over the world to study from the best in NYC. It wasn't enough to pay the high rent in NYC though, so I would bartend a few nights a week as well. 

After a year it became apparent that I couldn't do it all. Full time job, auditioning full time, bartending at night, and the flare ups I had to push thru and keep moving. I'd be lying on the ground in my office writhing in pain one minute and up working the store the next. My work and my dancing were suffering so much.

I danced with the NYC Cheerleaders, Off Broadway Productions, I toured with a Latin Jazz Company throughout the Tri State area as well as overseas in China, and helped fellow alumni produce and dance in their choreographic work. We often had no money for dance space so we would rehearse in Central Park or someone's apartment. Those were some of my favorite days ever.

The years start to get a bit blurry...

My life became a revolving door of auditioning, gigs, quit job, perform, find a new one.  I would bartend until 4a and be at a cattle call audition at 8a. Every time I got a dance gig it would conflict with my bartending job, so I'd have to quit and start over. I can remember 13 different dive bars, trendy restaurants, or clubs I worked at during those 5 years. 

And there was always a local bar around the corner where industry people would go after their shift to wind down. The problem with living a life of chronic pain and flare ups is that when you feel good you don't wanna stop, because when you do you know you gotta start all over. Body is stiff and in pain, so just getting moving in the morning was a game of willpower, many times I'd stay out until it was time for the audition. Just to try and ride that high of feeling good because I knew if I rested even for an hour, I either wouldn't make it, or it would take so much strength to start moving again I'd be useless at the audition. But I was going up against the best at my worst; vying for a couple spots - either way I was up against a brick wall trying to get over it - begging to just have an even playing field. 

I felt too damaged for love. I honestly believed my body would never produce children, and I had come to terms with that a long time ago. I thought I would never find a partner to stand by my side and go through so much; and then have to accept the possibility of being childless. I often fantasized of adopting a child in my (late) 30's, dancing on Broadway, no man needed. I was reckless at times and put a wall up sky high. I didn't let anyone in, and when I started caring for someone a switch would go off and I would destroy whatever relationship I had built.

I was angry and sad; I grieved the life I had when I was pain free and I grieved the life I wanted but felt impossible to be mine.  

I tried every type of birth control - the no estrogen one, the low progesterone one, the one in the pretty purple box. They would all stop working after a while or cause crazy side effects. Eventually, finally something new came on the market - the nuvaring inserted like a tampon it gave me the relief from the time sensitivity of a pill, but they needed to be refrigerated until used and that made traveling difficult. Not to mention an awkward conversation for new relationships.

I'd plan my doctor appts around holidays and after gigs so I could go home and manage the disease with my team there. I'd get a new birth control option and a script for pain medication. Every doctor and ER I went to in NY would just placate me or worse gaslight my pain and call me a drug seeker. Dr Sauer was my life force and kept me functioning. I don't think I would have survived that time without his care, empathy, and support.

You can see what kind of man you are dealing with when you see how they handle women's reproductive issues.  If they don't grab your hand and walk in that doctor's door ready to be educated, to be your advocate, to be your rock - he's not the one. Life's gonna get messy regardless and you want someone who doesn't shy away from talking about periods and your uterus. Guys had ALOT to live up to because my dad did all those things without batting an eyelash. I could talk to him about anything, and he took it all in just wanting to help me thru it. I was enamored with romance and adventure, but I would never allow myself to fall in love. I was too damaged, too broken for lasting love. We had a term for the guys who got too close - that they had been bitten by the love bug and it was time to go. If I cared about a guy friend who wanted more, I would panic, and friend zone them. Knowing I would ruin our friendship if we tried to date.

9/11 changed me too. I struggled with unrealized PTSD and survivors' guilt for years before I got the help I needed to process it. 

I started auditioning less, bartending more; and I found alcohol took the pain away better than anything. I was coasting in this cycle determined to "not let them win" but I was miserable and losing myself. I enrolled in a Pilates certification class trying to get away from the bar. It was 100's of hours I had to do without pay so I was back to working full time and bartending at night and trying to audition.

In 2003 I went to South Africa with friends to see their beautiful country. We road-tripped around for 6 weeks. It was the first time I had left NYC for an extended period of time in years. It was exactly what my soul needed. 

 

The sky felt massive and I felt so tiny in the universe. You would think it would swallow you whole, but it was the opposite. I felt free from the weight of expectation, pain, grief; and space opened for my heart to be heard. I'd often wake up early and just sit outside staring at the stunning world around me. Looking over the vast beauty one morning, with all the noise and distraction of the city finally melting away I suddenly came to the realization that I had kicked out that whisper from my heart. I was no longer following my bliss and I knew that if I didn't leave NY it would be 10-15 years down the road and everything I had sacrificed and fought for would've been for nothing. Dance felt trivial to me and this career I was holding on to for dear life seemed like a silly whimsy of a naive girl. I had lost my connection to the meaning and the power of art to heal, to challenge mindsets, to process emotions. 

My friend Lu, who had come into my life at just the right moment. She saw life with such raw clarity, and she challenged me to be better. She is still one of my favorite people to this day and someone I can always turn to when my heart is struggling. Her perspective always has a way of guiding me thru whatever is troubling me. I told her my plan and there was this wave of peace that overcame me. I knew it was right and upon my return started making my plans to leave. Not 8months later I was back home in Michigan in my old bed pivoting my life to Chicago. Michigan was never an option for me. My small town always felt suffocating since I was a little girl and Chicago was always my final destination in my head. Big city but close enough to go home whenever I wanted or needed to. 

A year after I left for South Africa, I was moving into my new apartment in Bucktown; I didn't realize it then, but I'd never step into a dance studio for a class again. I felt free of it and even though I told myself it's just a little break, dance didn't serve me anymore. 

The pain was getting worse. I only had 2 close friends in Chicago at the time. I had met Christian out in LA thru mutual friends, when I was auditioning out there. He had moved home to Chicago right before me. We clicked instantly and I was lucky to have him there. We'd go out to dinner at great restaurants, be each other's 'standards' for any event we needed a date for, but we weren't dating. We were best friends. I told him everything I had been thru with this disease, my fears of being childless and never finding love, feeling too damaged and broken to be loved or to love anyone. He listened to it all and he was a safe place for me.

One night we were at the Ritz Carlton having drinks at the bar and he looked at me and said he didn't want to be friends anymore. A little confused, he went on to say that he loved me and wanted more, and if I didn't then our friendship would be too painful to endure. I didn't say anything, frozen a deer in headlights and I excused myself to the ladies room without giving him an answer. I looked at myself hard in the mirror, unable to deny my feelings for him any longer but so scared I'd freak out if we started dating. But I was tired of running from love. I knew if I said yes to him, that I would probably marry him one day.

I walked out and fell into his arms, kissing him and saying yes. It was one of the best and scariest moments of my life. We had planned a friend's trip to Pittsburgh that weekend to see Dave Mathews and it suddenly turned into our first date. Travelling was something both of us loved and it was the start of a beautiful journey. It was so easy and being together didn't change one thing about our friendship. A month later he went to Michigan with me for my 3rd laparoscopy surgery. I was out of it after surgery and don't remember a thing, but I was told he walked right in and took a seat looking at pictures of my ovaries and insides with my parents. 

He didn't bat an eyelash. 

I knew then just how special he was and that maybe I ran from love because my heart was searching for him.