Sunday, August 23, 2015



How do I give myself a break?

I have this sense of urgency about everything that I do. Editing in its own way is dreadful. Having to hear myself talk about the pain again and again is hard. I am tired of hearing and seeing and on some level re-living what I have survived. But I have to do it. I have to get the footage out. I know that it has to go out and I know that I have to work now.

Its just hard. Its hard to have PN constantly in front of me. My art helps keep me sane through this too. I get pockets of relief when I create and when my friends on facebook comment and interact with me through my art.

I want to give myself a break, to take myself out of this immersion. But I can't. I know how urgent it is. I know that I am lucky. I know that so many others are still in the dungeon of hell. I want to do everything that I can do that is within my power to reach them, to bring them hope, to bring them relief.

Once again, tears, tears, tears...it is good that they are spilling. I have felt so blocked, like I was just running from one thing to the next and that whatever I do is never going to be enough because I can't change the way things are. Accepting my limitations is hard. I feel like I am constantly diving into the deep end. I want to get my footage out but I want it to be the best that it can be when I set it free. Maybe accepting how hard this is for me is all that I need. Just to accept that this is really hard for me. The art gives me wings to fly into my own world. The video demands that I be present with PN over and over and over again. How many times can I hear myself talk about the suicide, the terror, the abandonment, the isolation....? How can I stop when I know that others are still trapped and chained to what I have been so lucky to have escaped from.

I want to take myself on a vacation. I want to give myself some beauty, some rest, some peace in nature. I want to give myself some breathing space, to explore, to take in, to stroll, to feel gratitude, to be surprised....I want an adventure. I promised myself that if I ever get out of the pain I would take myself out to nature. I would travel again. I would slip away into nature.

I want to do this for myself. I have to put clear goals and then I have to allow myself to step away. The feeling is this feeling of falling into a black hole. Like no matter how much I feed the black hole, it will never be enough. And if I stand over this black hole and feed it endlessly, I will be swallowed into it.

Find. Your. Balance.

Celebrate your achievements.

Slow down to the pace of a snail? What will happen?

I love snails.

I love shells on the sea-shore.

I am thinking of going to cape cod. To the beach. To the water. To me. Just me. Nature. Art. Breathe.







Monday, August 17, 2015


A piece of artwork that I made and sent to Dr. Sandra Carson.


I just got off of the phone with Dr. Sandra Carson from ACOG. Dr. Carson is the vice president of ACOG's education department. She told me that due to our conversation, chronic pain has been added to the list of educational objectives for the gynecologists and obstetricians in residency. This could mean a lot and it could mean nothing at all. At this point, I think, that what it means depends on us and our efforts to advocate and lobby for ourselves. She said that someone within ACOG will be assigned to work on building the curricula for the 'chronic pain' segment. I asked her if she could put me in contact with this person. I will have to inquire about this again soon. I asked her if she would like me to send her articles about the science of chronic pain and about pelvic pain. She said that I should send her a list of articles that have been published in peer-reviewed journals. She said that then they could contact the doctors to create the curricula. For starters, I will work on creating this list with Dr. Echenberg and with Dahri McFaline.

She recommended that we lobby the National Institutes of Health for more funding and research on pelvic pain. She said that we should direct our efforts to the National Institute of Child Health and Disease. The NICHD is one of the institutes within the NIH. It has the power to allocate money for research in pelvic pain. I asked her if she could put me in contact with someone from within the NICHD. She said that I should contact Dr. Spong.

Keeping my emotions out of this is hard. Dr. Carson was clearly oblivious to the magnitude of our plight. I have to work hard at controlling my anger and my frustration. I have to do this if I want to get anywhere.

I should consider it an accomplishment and a sign of god's grace that chronic pain was added as its own educational objective. But I know that this can mean nothing at all and that it meaning anything of significance depends entirely on my own efforts to advocate and to successfully build a movement that is dedicated to this mission.

I have the passion and I have the determination. I have to continue working towards our collective goal, believing in myself and in my fellow pain warriors.

Sunday, August 2, 2015

Jill Osborne, president and founder of the IC-Network wrote a beautiful blog-post about my mission and my artwork. I am very grateful for this. All of our conditions have to be taught and understood together. Being embraced, supported and encouraged by Jill gives me tremendous faith. Our letter-writing campaign has begun. Tomorrow I speak with Sandra Carson. Sandra is ACOG's vice president of education. I have to believe that our stories, our truths, our suffering will be heard. I do believe it. I know that we will be heard. Because we will not abate until we are heard, completely and deeply and powerfully and fully heard. Until ACOG evolves and transforms into an organization that puts diagnosing and treating all forms of pelvic pain  into its top priorities. It will happen. We are going to make it happen.




I am grateful for the support that I am receiving as I journey deeper and deeper into the heart of healing. I want to practice public speaking. I want to develop the courage to stand in front of hundreds and even thousands of people and to speak from my heart. I know that I will be heard. I know that I am being heard. I have to prepare myself for what is coming. I have to be prepared, prepared so that my impact will be great, so that the truth will be heard, so that suffering will be alleviated and justice will stand tall with pride and with honor. I owe this to myself, I owe this to myself first and then to everyone else.

It was generous of Nancy and of April to support my work by sharing my success with a wider audience. At the celebration I could see myself speaking about chronic pain. I could see it and it came easy, very easy. All I need is practice. I have everything else; the passion, the commitment, the dedication, the perseverance, the determination. The audience will come when I am ready.