Goodnight lovers, Goodnight Survivors

So, I led services tonight at temple and this always gives me energy, spiritual and communal energy to keep on plugging away at this life. I am memorizing 'The Song of Songs' by heart so that I can start the Friday night prayers with beautiful poetry. Yes, beautiful love poetry. Poetry about our yearning for love and for God and for intimacy. I am looking forward to memorizing the third chapter by heart and reciting it next time I lead services. The beginning of the third chapter speaks about the search and the quest for love; the finding and the losing and the expectant faith that it is somewhere. Oh, how I connect to the search.

We had our first Art Therapy workshop on Tuesday and it went well. I will post some of my drawings here but only once we finish the workshop. It is five weeks long. It was important for me to draw and to see the same drawings that I drew when my body was my torture cell. It was important to be able to draw this and to see it when I was not alone. There is something healing about being with others who are grieving and processing. Something about being together in this makes it easier to carry. Both of the women who are with me in the group are sensitive and caring. It was also an interesting challenge for me to be facilitating and participating at the same time.

My father is in the hospital again and this breaks my heart. Why is this relevant to my blog and to pudendal neuralgia? My father fell into a very deep depression or had a nervous breakdown. For months he could not sleep from anxiety about me. He watched me suffer and was helpless in the face of my despair, anguish and pain. He used to "walk me" (get me out of the house to see the life outside). On these walks I would talk about my desire to die. Must a child live for the sake of their father if their pain is unbearable? I asked him these type of questions often. I wanted to be granted the right to die. My father sunk further and further into his own despair. He lived in constant fear of losing me and became more and more helpless.

There is only so much that I can share out of respect for my families privacy. I tend to be very open so I am sure that I have shared more than my family would appreciate already. But I feel that it is important that I share this information because Pudendal Neuralgia devastates and destroys individuals and their families. Oh, there are so many 'if onlys' in this story and each 'if only' is more painful than the next. I try not to think this way anymore. But, 'if only', 'if only' the doctors would have taken me seriously in the beginning. Oh, 'if only......'

So there is so much pain and trauma and my father is suffering from severe anxiety and depression and probably from (undiagnosed) ptsd. He still cannot sleep without medications.
The Song of Songs is one of his favorite. I live his love and his deep friendship and faith in me when I recite it. My Abba (father in Hebrew) is a gentle, kind and compassionate man. He has always been so proud of me and so trusting and curious of my ways. When I got this condition I felt like a failure as a daughter too. I could no longer make him proud. I could only make him sad. And now he thinks that he is worthless as a father because his depression and suffering only make us sad. Oh, but love goes much deeper then that and many hearts beat together in one soul. That is what love does, it binds souls together so that they become one. I have learnt this from all this suffering because we suffer each other's pain.

How many friends do i have that are willing to suffer with me?

All i need is a few.

i know what love is, and i know that loving hurts
tomorrow i will visit my pops and maybe together we will read the next chapter of  'The Song of Songs.'

Goodnight lovers, goodnight survivors.

Sleep Well

Friends

Friends is a story in and of itself when it comes to suffering and sickness. Who really stood and stands by me? How painful it has been to feel the lack of responsiveness from certain relatives and "friends". And then there are those friends who were and continue to be with me through it all. Friends that love with a heart full of love. Friends that care with a deep and wide compassion. Friends that met me over and over in the pits of despair when all i wanted was to leave my forsaken broken body. Friends that cry with me and laugh with me. Friends that are not afraid of my suffering and despair. Friends that know the essence of love. These are my friends. Maybe i have fewer friends then i thought i had. But i know that the few that stick by me are the gems and jewels, my kindred souls and spirits. I think that it is for them and for my family that i continued living. i knew that they were not yet ready to let me go. They held onto me with their love and their tears and their faith that life still had a role for me to play. My friends. I can name them, count them on one hand.   Truthfully, i know that i am lucky to have true friends. I know that i am lucky that despite the long distances i can feel their presence, heart and mind with me. I know that I too am a friend in the way that they are. And I am grateful, so ever-grateful for the love and faith we share together.

I get tinges of pain, when i think of the people i had hoped would be there for me. I used to feel angry, forsaken, bitter. The dumb silence is infuriating, i try to let it go......breathe and let it go....
And to focus on the people who i never knew were my guardians and who showed me their faces and shared with me their light: a friend of my brother who sent me a book that helps me work on acceptance and loving-kindness. A friend of my mother who sent me packages full of beads and a wonderful book about healing through Judaism. And when memories of the mean and uncaring doctors that i met along the way take over i remind myself of my current doctor, who is full of compassion and care.

I guess i can consider myself lucky that I can balance the loss with the love. That I can balance the betrayal with the commitment, that I often find myself writing gratitude notes. I cherish acts of kindness. I always knew how valuable they are. When famine hit, gratitude was the rope that pulled me out from drowning in despair.

Goodnight friends. Goodnight stars.

Vaginas Speak Up!!!

art therapy workshop, 2011

So, this time I will title what I am writing after I write it cuz who knows what might splat itself onto the computer. Well, I wanted to write a bit about the support group that I "facilitate" and take part in. There are a few of us who come together to talk about our beautiful vaginas. My vagina hurts! My vagina burns! My vagina stings! My vagina, vagina, vagina!!! Most of the women suffer from Vulvodynia. They have enough in common with me for me to feel at home with them. (In fact I believe that many women who are suffering from Pudendal Neuralgia are being diagnosed with Vulvodynia. Why? Ignorance.)  Pelvic Pain conditions including Interstitial Cystitis and Endomitriosis and whatever other monsters there are out there are welcome. The sharing and the support are a blessing. I need to be able to talk about my depression and pain and loss and it helps to hear other women share and mirror similar feelings.

Next week I will be facilitating a small "Art and healing" workshop. I am sure that I will want to share some of the drawings/paintings and insights here. It will be a five week workshop. We will meet once a week for 2 to 3 hours. I am looking forward to getting the mess out with colors and drawings. And I am excited about seeing other women's messes too. I believe deeply and passionately in the healing potential inherent in self-expression and in the arts. I have a lot of ideas brewing in my mind. While my pelvis burns my brain churns. And I am excited to put all these thoughts into reality. Truthfully, it gives me a reason to live. I have a mission! All hurting vaginas speak up: We Need A Revolution!!!!

How is it that doctors don't know about these conditions??? Speak Up Girls!! It is up to us to get the word out. It is up to us to inform. We did it for breast cancer. The next revolution has got to be about 'down there.' Did you say down there? Did she say down where I think she said? Yes girls you have heard me correctly! Down there!!!!! No shame, say it loud: My VAGINA IS ON FIRE!!! MY VAGINA IS AFLAME!!! MY VAGINA IS IN PAIN!!! MY VAGINA IS finally beginning to be just another part of the human body that needs to be addressed and spoken about. SO, some of the thoughts that I have are related to creating some kind of show/theatre/art where women will present their works of art. Where women will let their vagina's take the paint-brush or the stage or whatever...

Doing something POSITIVE with all this PAIN

So, I see that I wrote the words positive and pain in the same sentence. That is an interesting notation. Yes, I am trying to create some positive healing spaces. Otherwise I would be unable to cope with the feelings of loss and grief. I have no choice but to create spaces of healing, support and self-expression. I mentioned that I am a Drama Therapist. My certification is from Israel and doesn't hold here. This is unfortunate for me because I absolutely loved my work as difficult as it was.

To put the pieces of my story together a bit more coherently for you: I moved to Israel when I was 17. I left my parents and my childhood life in Newton, Mass. I went to Jerusalem where my beloved grandmother lives. I lived in Israel until two years ago when I had to return to my parent's home because I was not getting diagnosed in Israel and I was overtaken by pain. Oh, this is a long story that I will get too later. (All the suffering of going from doctor to doctor and how miserably I was treated along the way.)

 IGNORANCE, does that sound like a familiar word to you??? Ignorance broken down to Ignore. Is that written in the doctor's text-book? If you don't know what is wrong with a patient then just Ignore them. Send them to the next doctor who will send them to the next doctor. Once again, time is precious for those suffering from Pudendal Neuralgia because the human can only take so much suffering before he/she.....But crying in doctors' offices only made them want to kick me out of their offices faster. Does this sound familiar to anyone??? Cuz I felt like I was going crazy, running to the emergency room only to be told that really, there is nothing wrong with me. Really? Do you say So? I understand that you cannot explain the Torture that I am experiencing, but can you take the time to explore, so that just maybe you could help me. Hello??? Hello???? Hello??? Is anybody out there? Can anybody hear me??? Please, please, somebody, someone, help me!!!!

And suddenly you note that people have begun to judge you for your suffering. They know that it is all in your head. 'She has been acting so strangely.'  'She really is being dramatic about this.'
Well, my intention was to write a bit about the workshops that I am creating and the support group that takes place at my parent's house. And about other ideas that I want to share with you. But I guess I needed to rant and rave. Catch you later, I have been sitting while writing this and you know who is unhappy. My sweet and sorry Pudendal Nerve. Sleep Well.

Depression

The depression is heavy today, a heavy static and sinking feeling wrapped in one. Looking at pictures of when life was on my side. I always had a smile on my face and I was always excited about something. Today I feel like my face is a smile-less cavern. Then I look in the mirror and I see that I still am pretty and it makes no sense to me. That my face could stay the same after everything that I have been through. No sense at all. It is all so unreal, I guess as unreal as the face of a murderer who looks just like any other human being. Does it make sense that after so much torture I would still look the same. Is it fair that doctors did not believe my agony because they could not see the pain? Only my family saw the pain and it took them a long time to get it too. Every day is another one to get through. Some are easier then others. There are times when I feel that I can tackle this, that I can live with this, that I can voice all of this and help others too. And there are times like today where I just want to stay curled up in my shell, diverting my sad eyes away from my family, pretending that this is life. And it is life, a new life.

How do I come to terms with it all? Does anyone have a suggestion cuz today I just want to get off of the merry-go-round. I am dizzy and disheveled and just a little sorry for myself.

I made a huge order of beads today so that finally I can get to work on creating stuff. I do want to get serious about making jewelry and I would like to have my own little web-site one day. That is what I do with my time a lot now. I order beads and surf the web getting ideas. My desire to create is still relatively strong. Though there are many days when that also just ebbs back and forth between the rocks. Until something happens and I am pulled back into life and with that comes the desire to create, beauty, delicacy, patience, femininity, compassion. I would like to think that like flowers and poetry, my jewelry too could speak and tell of the gentler kinder softer parts of life.

As for healing. I will save that for another day. Today I will stay quiet and low, licking my wounds, counting my losses and wishing.....

What I went through

It is hard getting used to a life in bed. Because I cannot sit, I do most of whatever I do (read, write, work on the computer, make jewelry, talk on the phone....) in bed, lying on my side. It is hard getting used to a lot of what this condition demands that I get used to. Very hard. Still, compared to where I was before I got on the medications that are helping me, I am doing better. There were months where I lay in the corner of my little room, rolled in a ball, being stabbed by sharp knives. The stabbings were relentless and excruciating and went on for hours, days and months. There was no blood, and how I wished there was, so that I could bleed to death and die. What kind-of mad-creator had created this form of endless torture? When I pleaded to 'God' it was for mercy. Tears streaming down my bloated (from crying) face I begged "Please take me away." I repeated this over and over, my spirit and soul caged in my body that had become the cruelest of torture cells. I was jealous of those that had terminal illnesses, those that knew there was an end-date in sight. Those that could say their goodbyes and leave with morphine pumping through their veins. I was jealous of the living too, but health seemed to belong to a world that was so far away from the one that I inhabited. The outside world was something that was "out there". Something that belonged to the living. I was neither alive nor dead. I was a victim of the unbelievable, the unfathomable. There was no way that my mind could process the intensity of the "pain" that I was experiencing.  Electric shocks, stabbings, wrenches, balls of fire turning and twisting my flesh from the inside. What kind of a devil was putting me through this? What did I ever do wrong to deserve this? I had always been a caring and compassionate soul. The knives worked for hours on end, ripping me apart and then ripping me apart again. If it were real knives or electric shocks that were creating this mind-blowing, excruciating 'pain', I would have been dead after the first round. But instead evening after evening, night after night I was butchered again and again and again.

Needless to say I suffered from severe anxiety and depression. The terror of what was happening to me left me in a constant state of anxiety. I had no control over the pain. I could not put an end to it. It was merciless and all-powerful. I was terrified of the dark places that my mind was taking me to;  death by drowning, slit-wrists, the bath-tub filling up with bloodied water, my parents finding me, i could never do that to them, freezing to death,... my thoughts scared me to death. I had never contemplated suicide before this condition. While my pelvis/inner vagina was being wrenched and shredded apart, my tormented mind was desperately trying to find a way out of this torture. The only way out it knew of was suicide. And this scared me to death. I was terrified that I would act upon my thoughts, terrified that one day I would have no choice but to take mercy upon myself and to end my suffering by suicide.

I was alone in a world that 'normal' people did not even now existed. Alone in a world that the average doctor did not know existed. Alone in a world that 'God' had abandoned for certain.

belladona and opium suppositories

   


So, last night was my first night of trying the suppositories. I did feel less pain and more comfortable in my body. I think that I slept better too. I am on 300 mg of Lyrica. I take 100 mg 3 times a day. I also take 120 mg of Cymbalta in the "morning". My "morning" is a bit different. The Cymbalta gives me a pretty intense insomnia so usually I fall asleep around morning time and get out of bed (still feeling exhausted) at about 12:00 (my morning). I slept better last night and got up spontaneously at 10:00. I had no feelings of a "high" and I am happy with this. Just felt a reduction in pain. So, I will keep up with the suppositories and see how I feel. Damn, is it nice to feel less pain. How lucky are the people who live in pain-free bodies. Who knew that such horrible conditions existed? I did not until it hit me over the head and knocked me down and left me begging to be released from this misery. Begging to die, wishing that the pain would just kill me already. Whoever suffers from this condition knows what I mean. The heights of agony are unfathomable to the mind that has not been scarred and shaken by them.

Hurray for Opium!! Hurray for doctors who understand the danger in leaving their patients in pain! We have a lot of work to do. A whole lot of work. So this is my information for now. Cymbalta helped a lot but it only helped once I went up to the higher numbers. I used to cry every night cuz the pain was too much to bear. It helped tone down the burning and saved those nightly tears from spilling.

Don't give up!!!

   
 I wanted to share something beautiful that I read the night before last. Victor Frankl in his beautiful and extraordinary book (which he wrote in nine days!!!)  "Man's Search for Meaning" writes this: "It had been a bad day. On parade, an announcement had been made about the many actions that would, from then on, be regarded as sabotage and therefore punishable by immediate death by hanging. Among these were crimes such as cutting small strips from old blankets (in order to improvise ankle supports) and very minor "thefts". A few days previously a semi-starved prisoner had broken into the potato store to steal a few pounds of potatoes. The theft had been discovered and some prisoners had recognized the " burglar."  When the camp authorities heard about it they ordered that the guilty man be given to them or the whole camp would starve for a day. Naturally the 2,500 men preferred to fast."

    
When I read this I was blown away. The fact that 2,500 men preferred to starve for a day when they were already suffering from life-threatening starvation is HUGE. Victor Frankl's use of the word "naturally" also amazes me. The fact that it was natural that 2,500 made this choice together is incredible. It is a magnificent triumph of the spirit. It speaks of unity and oneness and of the victory of dignity and humanity over brutality and cruelty.

    
Never give up hope. We have too much work to do. There are too many of us suffering. We with all our limitations have to get the word out. We have to help each other. I won't believe that all my suffering is for nothing.

Goodnight girls, goodnight sisters.

Goodnight Donna and Liat and Dganit. Goodnight Peshie. Thank you for having stayed by my side through all of this.

Love

The things I miss

Oh, the things I miss.

It hurts to think about them, so, why would I want to write about them?

I miss walking down Emek Refaim on Shabbat, in Jerusalem, and feeling beautiful. Dressed in my Shabbat skirts, adorned with my jewelry, a bit more aware of my femininity in the slightly high-healed sandals that were perfect for strolling. Strolling or walking through the streets of Jerusalem, on my way to temple, to let my voice glide, roll and somersault with and into the hundred other voices that came to praise and thank God for all that was glorious in their lives.

Towards my last few years in Israel I had slowly developed a taste for jewelry that was made out of silver and gold and gem-stones. Being a Drama Therapist I could afford sterling silver and gold-filled necklaces. But I could only afford to marvel at the beauty of gem-stems. Recognizing beauty was not expensive, it was just an art. There was joy in spotting a beautiful necklace and then obsessing about it for weeks and then finally purchasing it in honor of the holidays or in honor of my birthday. Small delicate stones strung together, things that glistened or sparkled like the stars in the desert sky. Opals that shined like the moon on my sun-brown skin. There was always a reason to celebrate something because life was generous. I often carried a sense of gratitude within me.

It feels like a different world. Must I return now to this one? It feels like a different me. She. She. How I miss her. That beautiful one that seemed to always be smiling at the world. That beautiful one that seemed so often to be overwhelmed with love and compassion. That beautiful one. The one that wore the skirts that are hanging in my closet here in America. The one that adorned her ankle with an anklet made of tiny light blue opal beads. You know that one? You know. It is laying here on my childhood desk in the room I grew up in. It is here. I put it out to remind me of her. Even if it hurts, I don't want to forget her.

"She is gone. I have lost her forever. She will never come back. " I cried hysterically, shattered and crumbling under the realization that the life that I had lived and known would never be mine to return to. Shattered with the awareness that  the body I inhabit will never feel the same as the body that "she" inhabited. "She is gone."   My mother and father sat beside me as I mourned the infinitely painful loss of everything that I had loved and wished my life to be.

If each tear that I shed over these past two years had crystallized into a gem-stone I would have strung for all of you necklaces that would remind you of the stars and of the moon and of your femininity. I would have given them to you so that you never forget. Never forget who you are while you grieve the incredible losses and while the shards of glass scrape your insides into longings for death. You will wear the necklace. I am making it for you. I swear, I am working on it now. You will wear it in order to remember who you are. I won't let you forget. Woman.