Denial Gratitude vs Genuine Gratitude

During my yatrayoni I have come across a line of thinking in which people are grateful to their illness because it supposedly changed their lives for the better. While I appreciate that they could see that good came with the bad, the concept never sat right with me, and I didn't figure out why until recently. 

This approach does not give credit where the credit is due:

to the individual, not the illness.

This "denial gratitude" denies that a challenge was put forth to the individual, denies the role of the individual in overcoming that challenge, and denies the grief and loss that are inherently part of the process.

I am absolutely NOT grateful to my vulvodynia. Nope, nope, nopity-nope. Wouldn't wish these things on anyone, and certainly not on myself.

But I am endlessly grateful for my response to my illness.

By being brave and persistent and compassionate and curious I have turned this challenge into a great learning experience. I used it as an excuse to cut the bullshit out of my life, and make choices that brought me closer and closer to happiness and meaning.

The illness didn't rescue me, I rescued myself.

Owning my power is a refreshingly strong place to be. By giving the credit to myself I do not fall into the trap of erroneously attributing good to evil, or believing that I am dependent on outside forces to fix my life. 

The fact of the matter is that pelvic pain SUCKS.

Good can come from it, but only if I make the decision that it will.

The International Pelvic Pain Society's Annual Fall Meeting Comes to a Close

As I write this it is early Saturday evening and I am on the Blue Line train headed to O'Hare.

There are more sessions tomorrow for providers who want continuing education credits, but for me the IPPS Annual Fall Meeting is over.

It's hard to believe that less than a week ago I was telling you how nervous I was for this conference. Despite my initial jitters, it was so...easy.

At the end of each lecture there was time for comments from the audience, and individuals making said comments were asked to introduce themselves. Aha! Opportunity knocks! I asked a few questions to the early presenters, so people would know me (I figured this technique out at the BlogHer Conference this summer.) When I introduced myself, I did so in a memorable but not over-the-top way, put my intelligence and humor on display, and...it worked!

For the rest of the conference whenever I introduced myself, people would respond "Oh, you're the blogger!"  Victory!

I was happily surprised by the warmth with which I was received.  The majority of attendees were physical therapists, who generally develop deeper relationships with their patients since they get to spend more time with them than doctors do. Being well-acquainted with the struggles of their patients, and well-aware of the negative impact depressing chat rooms have on patient morale, they could see the need for positive patient-to-patient interaction on the internet. (The doctors I met did too, FYI.)

Some attendees wanted to ask me questions about the patient experience: How do I start a support group? Will patients respond to an invitation from me even though I am not a patient myself? I get so upset when patients fail to comply with my recommendations, how can I build trust and help them help themselves?

One keynote speaker even took it upon himself to introduce me at the Friday night cocktail hour to as many people as he could. "Faith, you should meet so-and-so!" It was great, and I was and still am deeply appreciative to him. I think it speaks well not only of his character but the tone of the society that someone who could have easily overlooked me instead welcomed me and did his best to integrate me into the group.

My mind is on autopilot right now, as it reached full capacity a while ago. It is bubbling with questions, ideas, visions. I learned so much - there were ten presenters on the first day alone - and it will take a while for me to wade through the swirl of thought bubbles and turn them into useful information for you.

In the meanwhile, I am so glad I took this leap. Fun fact: as recently as this past May, I wussed out on going to the Alliance for Pelvic Pain's Conference (which is for patients, and therefore wouldn't have been so scary, right?) At that time I already had the idea for this blog, but was waffling. I wasn't quite ready to share this part of my life with the world. I was scared of being vulnerable and exposed. Getting to a point were I had the guts to attend not only a conference, but one for which I was not "qualified," has shown me how much I have grown in only six months.

You may not think of attending a conference as being a healing agent, but for me it was. More than anything else I have done, attending this conference normalized my experience. Everyone spoke about pelvic pain out in the wide open public! The signs saying "International Pelvic Pain Conference - 4th Floor" or "International Pelvic Pain Conference - Registration" were out alongside the signs directing people to the knitting convention being held in the same hotel. The bathroom chit-chat on breaks breezily used such terms as "vaginal" or "vulvar" or "uterine," regardless of the non-attendees waiting in line alongside us. This group of professionals were more comfortable with communication about pelvic pain than even my old support group, whose members had so many past traumas about their pelvic pain that opening up about it was a challenge. Not these folks. They live and breathe painful pelvises and if they have ever had a shyness or an unwillingness to discuss female anatomy, those days are long gone. 

I was touched by how much the attendees cared about helping their patients get better, and saw that many of my frustrations were theirs as well. They too were upset that most medical professionals don't know about pelvic pain, that their patients often showed up to them in tears after years of failed attempts at getting appropriate care, that insurance wouldn't pay them for the time and attention needed to work with people facing the complexities of chronic pain.

It was comforting to be surrounded by 380 people from a variety of specialties who knew what I was talking about, could empathize, and were invested in making my life better. Everyone there realized that our numbers were small given the immensity of the problem at hand, but knowing that there are wonderful clinicians out there - few in number though they may be - made me hopeful.

Yes, this conference was great. Owning my pelvic pain, instead of detracting from my happiness, has instead added to it. Who knew?

Yay!

Here are some fun photos of Chicago I thought I would share with you:

The skyline with the Lurie Garden at Millenium Park in the foreground.

The edge of Lake Michigan. I love that the two boats on the left belong to the Oakland Park District - I wonder what they are used for?

Another shot of the lake.

I spotted this along South Michigan Ave...Swami Vivekananda spoke at the Parliament of the World's Religions at the Chicago World's Fair in 1893, became a well-known orator in the United States and Europe, and is widely credited with introducing yoga to the West - which is why I know about him, and why I took this photo.

Tables set up for chess players on South Michigan Ave. It was fun wandering through the river of big city life, getting caught up in the flow and then pulled into an eddy like this scene, a point of slowness and concentration alongside the zooming current inches away.

More Good Times

My husband and I wisely tacked on a few extra days to our trip, so we could be together after my in-laws had returned home.

This was a great idea.

We got to connect and have some quiet time to recover from the hustle and bustle of family before we returned home. We had originally planned on staying in Miami, but on a whim drove an hour south and spent the weekend in Key Largo. It was our first time in the Keys and we had a great time, snorkeling, kayaking, splashing in the hotel pool, watching the sunset, and singing the Beach Boys "Kokomo" ("...Key Largo, Montego, baby why don't we go to the Kokomo...")

Here's another postcard I picked up:

And here's a gorgeous image I snapped of, believe it or not, the cover of the Florida Keys Visitor Guide in our hotel room (I wish I remembered to write down the artist's name!) I find the colors and texture of this painting so inspiring and beautiful. It makes me grateful for art and artists.

Thank you artists.

The time in Key Largo gave me time to reflect on the trip, and made me realize how far my husband and I have come from the deep and dark times of the pain days.

As much as I would never wish chronic pain on anyone, I am so grateful to myself for making lemonade out of this big kahuna of a lemon. I have learned so much about myself and life, way more than I could write here in this one post.

Within this post I can say that all of these lessons have brought me to a place where I can enjoy time with my in-laws, an area of life that is a struggle for many married folks. I am grateful for that.

Again my dears, there is light, there is hope. While pelvic pain is all bad, it's effects don't have to be. You have the choice to create beauty out of the misery you are in.

Much love...

Taylor Swift, Dance Healer?

In my early days of vulvar pain, I noticed very quickly that my symptoms would worsen when I felt angry and powerless. There was something about that disheartening mix that produced searing pain spikes. 

Over the years I slowly learned how to feel angry...but not powerless. I learned how to recognize anger as an indicator that my boundaries had been crossed or my values violated, and that instead of feeling like there was nothing I could do, I could channel that energy for change, either in outside circumstances or how I perceived them.

My emotional boundaries were therefore gifts rather than liabilities, and I learned how to recognize, strengthen, and respect them. Instead of being porous, with everything hitting me right in the heart, I developed a thick skin, allowing me shake off the slings and arrows of life on Planet Earth.

And now, finally, there is an anthem for my newfound freedom... Shake it off, Tay-tay!

Lazy Late Summer

After coming back from a busy and fun vacation, I found myself craving a bit of quiet time. It felt like I had been going, going, going, since...well, for a long time, at any rate. Rather than jumping back into my old routine, I gave myself the gift of taking it easy, slowly coming back to daily life. I took naps, laid in the hammock, watched the late summer unfold.

I found these quiet moments so nourishing.

As we close in on the autumn equinox (Tuesday, September 23rd), the shorter days nudge my body and mind to take stock of the summer's bounty. The idea for this website poked it's head up in the spring, and finally came into being in the summer. I am so grateful for this site, for this blog, for the opportunity to help raise awareness about pelvic pain. 

What crop have you cultivated this summer? How is your life unfolding?