Global Patient Symposium
Together for Tomorrow
March 18-19, 2023 - Einhorn Auditorium, Lenox Hill Hospital, NYC
I did share them with Dr. Suskin. Um, thank you, <laugh>. Thank you. They're, they're, it's a visual diary of how I felt on that day. Um, I was in a Maya fascial program and I was, uh, heard this quote. One of the, uh, therapists had given it to me and I just thought it was beautiful because even though we are in a dark place and pain is dark and hurtful, you know, sometimes out of the darkness comes good. And we just always have to try to keep a positive thought about it. Um, so I don't have a clicker. Yeah. Which one?
This one is the <inaudible>. Okay. And this one's the next slide.
Okay, cool. Thank you. Um, so again, these are just, uh, very small size drawings that I do. I predominantly just draw in pen because I don't want to erase for the simple fact that you have to stay with what it is that we have. Right.
Um, here's some of my conditions. <laugh>. Um, so I'm an artist. I am a retired art educator. I have endometriosis stage four plus. As I was told, I am lymphedema. Stage two, it is bilateral, meaning that I have it in both legs, primary, and I have adeno, myosis cannot say that name. I developed frozen pelvis and then I ended up also getting c r ps. Um, so that's me wrapped up. Um, these pieces actually were done, um, in the nineties. They're just drawings outta my sketchbook. But the ironic part about it is that I had no idea what endo was or anything about endo. Um, I had only known that I was told I had a tilted uterus, uh, and that was the reason for my pain. But as we all know, here, endo is so isolating. So obviously on those days or that night, I felt a little alone.
You know, if you see the, where's the little button? Woo. See my little hand sticking out and, you know, and then just all of the pain and whatever, and kind of being stuck. We all know endometriosis is so isolating. You lose a lot of friends, you lose family. You use a lot of things too to it because people just don't understand. So if you have people that have your back, keep them close. Again, these pieces were all done in my sketchbook, but these were prior to, uh, me knowing what endometriosis was. Uh, I had studied in Paris and, um, so these, this was just a scratch board piece that I did in 2001. I was hospitalized and I didn't know, they didn't know what was wrong with me, the whole thing, you know, cancer, P C o S, blah, blah, blah, whatever. Um, but ironically they had found a lot of blood in my pelvis, so there was a lot of pockets of blood.
Um, and then the, uh, last piece over here again was before I knew I had endo, but you could see how I'm ripping out my abdomen and I'm just, the arms and everything just being torn apart. Um, there's a little backstory to that one, but we'll skip <laugh>. Um, here's my lymphedema. So, um, with my lymphedema, like I said, um, it's primary bilateral. Um, and we didn't know at the time, um, what the correlation was between my endometriosis and my lymphedema, but they both were going up at the same exact time. And then once I became a teacher and I was standing for eight hours a day, it was so much worse. Plus that with my, uh, having my menstrual cycle, my legs really blew up. So I kind of have that fat balloon foot hanging up over there. But this piece over here was like the compression that I feel all the time.
And, and when I get bound, when I travel, which I still do travel, I actually have to wrap my legs in probably about 15 ace bandages in each leg. That's more like this piece over here. So these two pieces here are actually etchings that I've done. Um, but again, just trying to show the feel of what it was. I had told the other group, and I'm just gonna tell you really quick, I was in an, uh, an artist group when I did this upstate. And I thought I was safe because I was around a bunch of artists and I actually was highly rejected and they felt like it was too heavy. And they were like, you should shouldn't be drawing that. You should be drawing, you know, like leaves and trees and whatever. So then I came over here and I did this piece and, you know, told them all to <laugh> hit the road cuz it wasn't that I couldn't draw the trees and you know, the architecture I could, I was trying to draw what I needed to.
Um, this is, uh, from this piece here is actually an etching. It's not finished, but it was me in Paris when I was living in Paris. I, uh, didn't have health insurance in the states. So when I was living in Paris, I had health insurance and I went to the dentist and everybody. So here I am, but it's an etching, but it's that dark lonely feeling that we all have and that isolation doctor's office. This piece here again, was before I was actually diagnosed, but um, you know, if you notice the mask that's I have on up there, um, the mask is what we all wear every single day. We all try to act like we're normal. Um, I am Irish and I was raised to be very stoic and you know, you have that face on every day, no matter what it is that you're going through, you just gotta pull up your boots and keep going.
And, um, the ironic part, which I noticed while I was selecting some pieces for this, was that all of my issues around my left, so technically looking at me, all of the sword should be on this side, but I was feeling it cuz I'm drawing it so it's on my left while I'm drawing, so I'm not gonna reverse it. Do you understand what I mean? So this is actually the way that I felt. So it's almost as if I'm looking in a mirror, I'm not thinking outside of it. And these are all just drawings outta my head. Like I just, you know, at night makes me feel better. Um, just to let you know that it's not just all, uh, endometriosis and lymphedema. I was also hit by superstar Sandy. And this is how they cleaned up our house. <laugh>. They took all your stuff from, uh, your house through it in the street, and you had two bulldozers come from each end of the road.
I see a few people nodding. So they were also destroyed and they scooped up all your house and threw it into a dumpster. Um, but this piece actually won. So whatever. But you could see like all parts of the family woo <laugh> course. Um, did I skip one? I don't know if I skipped one. How do I go back? No, we're good. All right. So, um, amongst all the endometriosis, um, I had been dismissed whatever by other doctors before I found my excision specialist who was, you know, absolutely saved me. And I'm not kidding because my, uh, descendant colon were diffused into my abdominal cavity. So I wasn't able to have any bowel movements and I wasn't keeping any food down either. Um, I was dismissed by the other doctor Haphazardly gave me the name of my excision specialist. He had me in his office within a week. And I'm gonna tell you this quick little thing that, um, my sister came with me on that day and as I was leaving the exam room, she saw me crying. And so she turned around and she said, don't worry. She goes, we're gonna find someone to take care of you. And not even a foot behind me was the excision specialist. And he said she's not crying because of that. She's crying because someone believes her. And that was when I knew.
So, um, unfortunately, uh, after my second excision surgery, which was a year after the first one, that is when we did find that the endo was on my lymphatic lands and on the arteries. So the endo and my lymphedema is, uh, correlated. Um, but to thank my surgeon, I, uh, painted him this painting. It was the last painting that I finished. And, um, this piece here, uh, hasn't been finished, but the next day when I went back to school, 21 days after returning after my second specialist excision surgery, I was hit with a steel door and I have permanent, uh, nerve damage in my neck. I have four herniated discs and my hand got crushed between the steel door and my laptop, but I don't give up. So this was actually a month after and I just realized it last night when I was picking my slides.
Um, I could see right here, my accident was march, uh, 14th 2016. So this was a month later and I was trying to draw a lefty. I was trying to still continue to draw my nudes. Um, and then this here was just a landscape I just did. You could see everything's like curved cuz I'm going lefty. Um, this was right before I had my last surgery. Um, I was passing clots the size of livers. It was absolutely horrific. I was supposed to have surgery in, uh, 17, but unfortunately my mother broke her neck. So that was put off. Um, and I spent the year, um, really passing really heavy duty clots. And, um, here, you know, like we all have had, um, like we all have had days, you know what I mean, where you get ready to go out and you can't, you know, and that was a Halloween.
I was dressed up to go but couldn't go. Um, the background is, uh, a watercolor piece that I did where I just was thrown red on red on red because that's what was happening to me that day. And then if you look on the other side, I just did a little quick drawing of my frozen pelvis feeling that my entire body was encased and being wrapped and bound. Um, after my, I, after the last surgery, I was having issues, so I went back to my excision specialist and I thought I really needed to have another surgery. Um, he had, we discussed and he knew that he'd gotten everything out of me. So had suggested that I try pelvic floor therapy, I went to pelvic floor therapy. It made an absolute change, um, in my life. And while I was there, um, with all the damage and scar tissue that I do have, my therapist had suggested that I go to the John Barnes Institute for myofascial release where I went for two weeks.
It was an all in, uh, in very intensive. It was nine to five Monday through Friday, and it was just n nonstop pelvic floor therapy for hours, hours. You got a lunch break, but it was rough. Um, but what I was showing people in the conference earlier on was the fact that, you know, these are just collages from stuff that I had gotten and I really did love. Um, Sam, I, I don't know if she's still here, but Sam had said yesterday, uh, must be uncomfortable to be comfortable. And that is so true with our path, we have to fight in order for us to, you know, keep going. I, I don't act like I have all the things that I have. At least I try not to. But anyway, I, for the sketchbook aspect, I was just showing them design your cover, make it yours, make it your own so that this way you have a personal attachment with it.
And also keep it small so that this way you could draw on it when you're on the subway. You could draw it on the bus, you could draw it when you're waiting in your doctor's office. Keep it by your bedstand because you might wake up in the middle of the night like I do and you have to draw because you're in a lot of pain. The pain, the drawing's not gonna take away your pain, but what the drawing's gonna do is it's gonna slow you down. It's gonna slow down your breathing, it's gonna kind of pull you away from it. These pieces are just two co two end pages. You know, when you open up your book on the inside. So again, the one over here, you know, I just, this is actually a card, um, my friend had given me after Sandy. And here's, you know, a blessed mother of God, Lupe.
And this is just a collage thing, so you make it your own and the more that you make it your own, the more that you're gonna work in it and that you're gonna actually like keep it. So I know we're running outta time, but here again is the inside cover here. And then this was the first page. This is my surgery in 2018. I have a book for each one of my surgeries. Um, so what I did here, have my license expired, whatever. So, and you could write it see on the side, like pain is outta control again, not tolerable. And um, you know, so whatever. I just kept some of the stuff that I have that when we go along and we get all this nonsense and sometimes you wanna keep it and you don't know where to put it. So get a sketchbook and you can put it all in and make it one big thing.
Um, here again, uh, I don't know, one of the patients stays here was my tag. I glued my metro card to it, kept it all in the same theme. Get will a healing mask card again. I visit the museum when I come in to see my doctors. So, you know, keep those things. All right. So this was after soup storm, Sandy. I don't have a drinking problem, so Sandy. Um, and uh, so those are just some alcohol and stuff. And I kept the labels and I put them on and wrote little notes as to what was happening to me at the time. Again, this was never for anybody to see. These were just my memories of that day of what had happened. No judgment. Um, I was showing the people in the conference that you don't have to be an artist in order to have a sketchbook.
You can actually take things that you have. Um, Ashley does beautiful flower arrangements. She could take her flowers and dry press them and glue them down. You could find leaves. This was when I was in Pennsylvania in the myofascial treatment. And I would take my dog for a walk and all these leaves were just like fallen all down crazy. And I was just, I don't know why, but I was mesmerized by. So I kept them and I pressed them and I glued them down. Again. I was showing the people in the other group that you, again, you could take pieces that you have, you know, this obviously playbill. I just added more to it and, you know, and whatever. Lithography pencil. And then here, this piece, I found a Colorado on a pack of licorice that I was eating on the airplane right home. And I took some markers and I finished out the rest of it.
So you could always take a picture that you have and you can extend it, fill it out. You could even do it with a piece of wrapping paper, you know, a card or whatever. You could just rip it off and keep it. Um, another thing that you could add into your, uh, sketchbooks are quotes. And that's a big thing that I'm doing a lot. So we always find these quotes that like we find meaningful to us on Instagram or into Facebook. I'm old school, I'm just turned 50, so I'm from the school that you write things and you remember them. So I was writing these down so that this way I was holding it and I was remembering it. And it's so true cuz if you do not address something, it's gonna come back to you in a different way. So these are just things that I found strong and I wrote 'em in my little sketchbook.
You could see by the different books. They're all different books. I have a lot of them. Um, I was telling the people in the group that they could also just write the words over and over again. You could write your name over and over again. You could write curse words over and over again and you could write 'em in different sizes and different colors and different directions and turn your book and whatever. And it comes out cool, you know, and it's for you. And it's just in that process of doing it that you're slowing down. And then I really like the negatives. So if you look at the middle piece here, that was actually the backside of one of those other pages where I wrote all the words. So now you can take that page and you can take a black pen on it and you can make an all these new designs into it.
And they can be abstract. They don't have to be realistic, you know, it's, you'll get the same effect from it no matter how it is that you do. And if you look at the two pieces on the side, there were actually pieces that I had written stuff down. Well, I didn't want, I either didn't want someone to read it and I just needed to write it down or whatever. So I went over 'em with Sharpie marker. Don't rip pages outta your book, you're gonna ruin the binding. So keep it in there and color over it, fold it in half, glue it, you know, make it into something else. Don't rip it out and ruin your book. I used to make my students make books. Um, color theme, right? You could, we have handouts with, um, various patterns of doodles. You know, very simple actually. If anybody was in the group, if you up, there's the, there's the greats that I was talking about. Ooh, does that work on there? Look right there. Those are those grates that I was talking about. Three vertical, three horizontal, just repetitive patterns. And these I just had selected because there's a monochromatic, this piece here, I just used two colors. The two N pieces did more of like, you know, color prism and this small piece in the middle. I just did a brick wall and then I went back and I had a color to it.
You wanna go back, just do black and white, you know? And here this one I wrote first, you know, in August the pain returned. I actually remember exactly when that was. And so, you know, here I just doodled over and over, over and again and there's nobody in here. I don't care who you are, there's nobody in here. Even if you're working with your opposite hand, that can't sit down and do these things. And when you start doing this over and over, you will actually slow your breathing and pull yourself somewhat away from your pain. It's not gonna cure your pain, but it will just pull you away. These were the handouts that we gave out. And then these were the, also the handouts. There's some more of these up at the front desk if you want. Um, you can, um, I designed them and you can fill them out with some of the um, zen dump doodles and all that stuff. And I, you know, oh, oh sorry. Um, and I put over there, um, you know, if you can hashtag the endo fund because I think that would be great for everybody from here who's done a piece that they can, you know, share it and show it with everybody else. And then I also put myself down there cuz I personally would like to see what you did. And I took the, um, original pieces and I'm gonna finish them myself and I'm gonna post them and tag the endo foundation as well. So that's that.