To appeal to a wider audience I decided. totry my hand at selling custom collages over on Etsy. These 11x17 (the first batch of photos) look amazing framed, and the 18x24 look incredible as well! You can see how they would look in your home, and have the option of either size with a different variety of images for each one. You can find the shop here :
One of my favorite things in the world is watching someone perform their craft. To add to my love for this, I sometimes get to view people I love doing what they love through my camera lens. Garrett humored me and let me take some photos of him flintknapping (creating arrowheads) early one Saturday morning while the soft breeze accompanied us. Watching him meticulously work his art was mesmerizing and made me want to pick up another form of art because of how his face lit up when he created. Enjoy seeing Garrett create through the angle of my camera lens.. which is such a privilege to be able to see through.
I believe the greatest gift we are given in this life are the relationships that we are born into and the ones that we make along the way in our journey. Over the past couple of years, this family has taken me into their home in the toughest of times and showed me a love that has helped me heal. When you walk through the fire and reside in the darkness of pain, you are left alone with most things stripped from your world. I began to think that there was no way anyone could love me during the overtaking of pain and what it would do to my body.. until Janna and Emmie.
Not only have they opened their home to me when I have needed care and love, they have sat with me and nursed me through the toughest of circumstances. I could be vomiting, thrashing on the floor and screaming in pain and sweet Emmie would hold me and sit besideme telling me everything would be ok and that I was loved. At the same time, Jana would be tending to me giving me nursing care- running fluids, pushing Benadryl, loving and praying. This family has shown me what love really looks like. I was given the opportunity. to take some photos of their love a few weeks ago while we were on vacation. I strapped on my neck brace and played with the sun in a way I haven’t been able to interact with in YEARS. These guys are a miracle in my life, and these photos are nothing short of a miracle, too.
A little bit ago I had the privaledge of working with my sister through a Telepohto Session. It was such a fun and beautiful experience. I saw her be free in her body, and feel empowered in how she looks and feels. She loved being able to see herself as the photos were being taken, which is possible through the CLOS app. She also felt so safe and unintimidated as I was not there in presence with a large camera. It was so fun for both of us, and I’m looking forward to more distance shoots like this one that help women feel empowered and safe in their bodies.
3 x 2 = 6
In 18 months, I have undergone 6 life changing surgeries that I am still very much healing from. Turns out it takes a long long time for your neurological system to heal! Not only that, but I am realizng that although I have physically recovered from most of my surgeries, the energetics of all of these surgeries has caught up with my body and I am never truly “healed” post opp.
Writing this here is an attempt to practice communicating better, as this is one of the hardest things for someone with insane neuro symptoms has to come to tearms with.. as well as putting some of this experience not just in written form, but in a form that communicates what I hope to get across.
I wrote this as I was recovering from second styloid removal this summer. Without the ability to pull the photos and words together, it as stayed locked on a note on my phone. I would like to commit to writing more.. even just for my own sake. Some stability in this never ending hurricane I find myself trapped inside.
Six life changing surgeries on my body in the span of 18 months. That brings the total to 25 surgeries during a tender life span of 35 years. I know these will not be my last. I often crave the escape of a anesthesia, something I’ve known since a child, an escape from the horrible pain, for just a little while. When it wears off, I’m jolted back into this reality with full body muscle spasms, and an exorbitant amount of pain at the surgical site.
We all know that our body keeps the score, and I wonder what my body remembers and holds from all of the knives that have gone into her on the cold, sterile operating table. Not only that, but I often wonder where my soul goes during these interventions? Does it leave me fragmented? Am I off helping another? Am I able to go home to recharge myself with the love I need to keep pushing forward?
What you see as the surgical intervention is neither the end nor the beginning. The emergent state of each of these surgeries is a culmination of a lifetime of pushing my body too hard, not understanding the damage I was doing nor the nature of #ehlersdanlossyndrome . They are the culmination of years and years and years of searching for help, years of fighting for insurance to cover the exorbitant cost of these interventions. Years in solitude spent living hour by hour, with pain beyond what any living being should have to hold. Screaming like a dying animal, with a brain that was unable to form the words to advocate fully for myself. A lifetime of gaslighting from the medical community, belittling the truth of my physical experience, and wearing me down to a place of hopelessness and despair. Years of finding alternative treatments that have helped me function, until they couldn’t anymore.
And let’s not forget what happens after the surgeries: the long arduous task of recovering. The slow slow healing and recalibrating in a body whose tissues do not heal as a normal human does. I have taught myself to walk again twice in the span of 18 months. Which is huge, considering I was unable to walk further than a block for 7 years prior to these interventions.
I am a person who is able to hold hope in the darkest of nights, but this journey took that hope away. The hope I began to long for was death, and even as I was given the splendor of crossing the threshold of death, pain brought me abruptly back to my body.One time I was even escorted out of an Emergency room by a police officer, I have been put in a psych ward in a foreign city, and have been treated with a cruelty that cuts so deeply into my tender heart. This is not how humans deserve to be treated. I want to believe that people enter into the healthcare system to help, but it ends up being even more traumatizing for people like me. Having to fight to prove your need for medical intervention, to become the healer and doctor yourself, and to understand more deeply the injustice so many people face daily without it being a choice. Love is what will heal. These experiences allow me to love deeper, to step into spaces that once scared me, to provide comfort for others in the raging storm.
Here, I want to provide a pivotal thought. How could you know my gratitide for all of this without my expression here. I write two pages of gratitude daily, It is overwhelmingly beautiful what this practice can do to rewire and open your perceptions. I do not require your pity. I do not any longer require that I am seen and understood. Instead I seek to understand. In that place of understanding and gratitude I can perceive the gift in all that I have been given. I am a white upper-middle class women raised in the south with a very small framework of the real world. I have been given privilege where many do not have, and have been privaledged in existing within a loving and nurturing home.
These instances of injustice I am able to experience have set my life on a very different course than most women from the south with certian expectations placed upon them. I have been able to experience so much more of what it is to be human. What it is to suffer, to choose life, to have been given the chance to transform not by my own choosing, but the choice I keep facing. A choice I made before this life started. Yes, I want to know what it is like to be margenalized so I can understand my neighbor having a disadvantage just by being born with different skin color than me. To experience the injustice in our healthcare system drives me to holy rage.I want to reiterate that I am grateful for all of this. I am grateful for what this path has given me. I am grateful and so proud of who I have become because of it. Not instead of it.
Within it all I refuse to let my heart harden. It is a conundrum to me that with the more I endure, the softer my heart becomes. I understand so well the statement Jesus made as he died, “Father forgive them for they know not what they do.” A body cannot hold hate without it corrupting the tissues from the inside out. So, I choose love. I choose forgiveness of others and even my own tissues.. I choose to forgive my mind for thinking that I was always broken, instead of knowing the truth that there is never brokenness, there has never been inherit sin. I forgive those old beliefs and choose new ones. I will write more about this. I hope you hear that gratitude and acceptance in my words that you read.
These surgeries have been a traumatic miracle where heaven opened golden pathways for me to walk through. It has not been easy, and has taught me even more about surrender and healing. Without meditation and breath, the doors would have stayed closed and I would not have been able to walk through it all with such grace and trust. Without the prayers of the saints, and the devotion of my mother, provision from my father, and insurance through the marketplace none of this would have been possible.
I share this because I am not the only one who faces these insurmountable odds. There are many more brilliant souls who live in a body with hypermobile connective tissue, making the gravity and toxicity of earth a weight almost impossible to move and live within. Our lives are often in the shadows, locked away from the world in which we desperately long to experience. I’ve heard it said that our traumas create a new earth. If that is the case, then we are all imagining and manifesting a new earth right before your eyes. Are we a product of evolution, or a product of a polluted and dysfunctional earth? She is our mother, and our bodies are much more sensitive to her state and the collective consciousness, cosmos and hearts of love around us. You may not see us, but we are here, transforming, transmuting and holding suffering for the rest of humanity. Kind of like angels.. or maybe exactly like angels.
Three years ago, I spent a hot minute in LA. I needed insurance, and I needed healing. As soon as I arrived I found Santina, a cranial sacral therapist working out of Everybody Gym. When we met, we both recognized one another, and our work together began.
I was crashing with some friends in Highland Park when Santina made a home visit. She walked into the house and said “oh my God this is surreal. My ex and I almost bought this house 7 years ago.” We knew we were in alignment.
As our friendship blossomed, and Santina continued to teach me. We were laying under a tree one afternoon and she said “I think I know part of what’s going on with you. I went down a rabbit hole last night doing training with @upledger. I found a video of a therapist talking about her daughter who has #ehlersdanlossyndrome. From there, she described her daughters symptoms and her quest to find answers. Many of her symptoms were the same as yours..she said she could feel a bone in her throat (which has been my mantra for years) among many other things. She discovered her daughter had Eagles Syndrome.
Eagles is when your styloid processes (usually 2mm long) calcifies and grow up to 4-6 inches. People with EDS produce a ton of calcium because that’s the body’s line of defense when you have instability. If you have instability in a place long enough, calcium deposits occur-adhering to, or creating bones. It’s called “eagles syndrome” because your styloid processes grow to look like eagle’s talons.
When I moved back to Alabama, my CST Melissa told me she was at upledger that summer and heard the same talk. “I really think this is what is going on!” Melissa said.
Intuitively I knew they were correct. Because of their guidance, I have learned how to go into my body and heal. My inner physician is alive and well, but I could not heal this, as hard as I have tried. Before any images were taken, I knew in my bones (ha) I had cranial cervical instability, tethered chord and eagles.. among many other things.
In regards to Eagle's Syndrome, my symptoms have been as following.. and this may not be entirely comprehensive, because all of these acute paints have been effecting my head, spine, and nervous system. This has created a symphony of pain, beyond what even most Ehlers-Danlos holders will even experience in their lives.
- light sensitivity
-sound sensitivity
-sensitivity to touch, smell, chemicals, movement and vibration
-positional (upright) head aches (that feel like a thousand pounds of pressure pushing down on my head)
-the feeling of ice picks in my eyes
- cognitive dissonance ( I could not listen to people talking for long without going into complete sensory overload, which is a pain that is hard to describe. It HURT to try to process language. It HURTS to try to formulate words. At times I still cannot bring the thoughts in my mind to come out my mouth- it is extremely painful)
-screaming- non-stop screaming
-acute pain at the top of my head, resulting in me needing to bend over and put pressure as hard as possible against my head- for almost a year, i carried a metal pie pan around with me wherever I went- because these "episodes" can happen at any minute taking me captive by surprise
-loss of control of my extremities
- extreme facial and jaw pain (particularly right sided). This pain takes on every form of pain possible, from lightning nerve pain, to deep muscle pain, to burning, stabbing, instability type of pain.
- 24/7 activation of my vagus nerve. This manifested itself many different ways. From always being in fight-or-flight in my entire body, to suddenly and randomly having diarrhea + vomiting, to being unable to regulate my temperature, feeling extremely unsafe in my surroundings, heart palpitations, anxiety, and heightened sensitivity to all things
- carotid artery malfunctioning- for most days, especially when things would strike, i would feel like someone was choking my neck, blocking he blood flow to my brain.
- choking- for years, I have been choking on most things I ate. This would come and go in waves, but it has (and still does) feel like there's something stuck in my throat
- The feeling like my head is on crooked, and always off balance. I think this has less to do with eagles, and more to do with the dysfunction in my neck and face.
- 24/7 "migraine", which is quite the understatement. I've had migraines since I was 5, and this experience has been quite different. It's more like constant sledge hammer pain, unable to process anything, always being careful because it was constant and any little thing could tip it over the edge.
- The feeling like there is a "bone in my throat" always poking me and pushing on nerves, vessels and arteries
Then the long long odyssey continued with the medical system, because I was able to get insurance and the support of my family. I’ve gone through 4 highly regarded hospital systems including Mayo Clinic, Cedars Saini, University of Alabama Birmingham Hospital, Medical University of South Carolina, and local hospitals that actually killed me due to neglect and ignorance - This is Decatur General and The Huntsville Hospital Medical system- whom I intend to sue as soon as I am able to get my feet under me. I have had more testing and images than I thought possible- most showing the abnormalities very clearly, but Doctors chose to ignore the signs and symptoms that were in front of them so that they could not get sued.
This road has been so incredibly hard- harder than anything I have ever done. I have screamed for my life and have fought until i’m batterted black and blue to live. My friends have been angels who have called and researched on my behalf, raised money, sent cards of rocks and tarot and loving words. After my fusion surgery and the trauma that surrounded all of that, my mother and father finally stepped up to help, because they really had no choice. My mom has taken me to some of the leading EDS specialists in the US. This is a privilege, while also being extremely traumatizing.
At every turn, I advocated for myself. Everyday things would get worse. I’d go into some doctors offices screaming in pain. They’d take images. I’d point to my styloid process and say “what is this? This is eagles. You can see it right here!!” At each turn I was dismissed, told I was crazy or that “it’s just a product of EDS, right?” . I have been abused by healthcare providers more than you could possibly comprehend.
Every day I look in the mirror and see the noticeable changes in my eyes, my jaw, my face. I have worked with healers, facing the trauma, learning how to calm my nervous system. Any type of healer and body worker I could find that resonated, I would approach and do the work- physical, emotional and spiritual. I have not missed a day of meditation, a huge tool I have that helps regulate things so I can semi-function. The pain continued amplify. I have spent months screaming with my head against a wall, a pie pan, and with the wooden board I sleep with above my head. I have spent most of my days trying to calm my nervous system enough to function, never knowing what would set me off.
I have felt like my trauma is so deep and my nervous system so fucked, I’d never get out of fight or flight. I’d never find anything to ease the pain. Doctors don’t even touch your body when you ask them to FEEL THE BONE, feel the abyss in the top of my head! That’s always been weird to me, but I recognize how intimidating this is for people.
Trusting the process and trusting divine timing is hard. It’s harder when you feel like you could die at any time, any day. Over the past 3 years I have had 5 major surgeries. How in the world did these reputable doctors NOT see this while they opened up parts of my body?
At my Whits end, my mom called the EDS society’s help line. We were out of options. You have no idea the toll this has taken on me, my family and the people I love the most. The helpline told mom we needed to visit Dr.Chopra in Rhode Island. He is a complex condition interventionalist diagnostician.
This April, Santina came to Alabama for an entire week to participate in healing work on my body. I treasure the gift of her presence so much. We both learned so much. Again, healing occurred and things became a little easier and much clearer. Again, her knowledge and intuition pointed to Eagles. It was my birthday, and we both coined this year as “the year of Meg’s rebirth”.
In May, mom reluctantly (but perfectly!) drove me in my van up to visit Dr. Chopra. He had all my records in hand. I did not advocate for myself, but allowed him to steer the visit- since he is the best complex chronic pain diagnostician in the world. He did a lengthy physical examination. Then he came back and diagnosed me, from my head to my toes. The FIRST thing he said was “you have eagles syndrome” and I wept. The validation was richer than I could have imagined. On and on he went with more clarity and affirming everything I’ve known for a long time.
“Go see Dr. Bolognese. He is the best surgeon and the only one who can help Meghan”. His wait list was 2 years long.
As we started to head home, another attack ensued at a gas station. Everyone was freaking out hearing my screams from the van. We couldn’t go home while I was in this condition. Mom called Dr. Chopra, who called Dr. Bolognese asking for an emergent favor. That following week, my mom and Dr. B’s staff worked together to get all my records in for evaluation. And guess what? He accepted my case and would admit me for testing the following week!! Pre surgical testing happened, and It showed that I had caught the COVID, postponing testing and surgery for 3 weeks. You can read all about this on my caring bridge site.
After extensive, grueling testing, Dr. B ran me through 3D CAT scan with contrast and found my eagle talons. Later that day ENT came and numbed the areas where those talons resided, as a final confirmation. The next day I would have my right styloid removed. The left one will be removed on August 24th
The most unexpected thing has happened with its removal : I am no longer in an intense state of fight or flight in my body! The pressure has been removed from my vagus nerve, among many many other nerves and arteries that have been effected by this rare abnormality. Even if I had spent my whole life learning how to tame my nervous system, I would have never been able to succeed.. because there was an anatomical causation.
After my tethered chord release, (which is another long and beautiful story in itself) Dr. B. Was doing rounds and I was coherent enough to ask a few questions. This was his response,
“ Eagles Syndrome is rare. Within the normal human population, 4% of people may have elongated styloids. Within that group, only 1.5% are symptomatic. Within the EDS population (which fits into that 4%) 25% of you will grow elongated styloids. Only 12% are symptomatic. Yours are the thickest and longest (enter dirty joke) I have ever operated upon. The growth most likely started around age 16.
This is me with a dear friend around the age when the talons started to grow inside my body.
I also need to comment on how resilient and strong you are. I don’t know how you are sane. From a neurological perspective, I know what has been happening in your body. Everyday you face some of the most intense pain I’ve ever seen. A grown man, in your shoes, would most likely not last long.. even if the pain occurred for a few hours once a week. I don’t know how you are still here, it’s quite amazing” I told him I’ve desperately wanted to die, I have, but I couldn’t move forward with ending my own life. He said, “well I’m glad. You have me now, and we are going to do everything we can to help you.” (Weeping ensued).
From here, Dr. Bolognase and his team were also able to see 3-4 of these extreme pain facial/had attacks, which have not ceased since the styloid removal (as I had so hoped they would). The team commented that this is something they had never witnessed, and it was a “whole different ballgame” than Eagles and Tethered chord. After I had painstankingly started to walk again, go up and down stairs, and walk without a walker, it was time for me to be discharged from Mt. Saini Nassau. Dr. B told me it was time, and I started to cry deeply out of fear of going back home and still having these scary and insane painful episodes and way of being. It is easy to believe that I won’t be given adequate care, and that my case will be dropped since I have gone through years and years of medical gaslighting and dismissal. Things have just been “too hard and too much” for any doctor to get involved. Even still, as I type this, i am learning how to TRUST what Dr. B said next,
“ Meghan, do not cry and do not lose hope. Remember the conversation we had? Where you told me you were ready to die from euthenasia and I told you I supported that IF there was no hope? I told you that you found me, and I told you that Dr. Chopra and I would do everything we could to get to the bottom of what is going on in your body. I like puzzles that are hard to solve. I have all your records here with me, I am going to study them and I will not forget about you. You are coming back here in 2 months for your left styloid removal, and at that time we will be able to run more testing and have you recovered from these past two surgeries. Do not lose hope. Trust me.”
I am now two months out of my recovery, and there are so many symptoms that have gotten better::
vagus nerve pinching is gone- no more fight or flight, no more vomiting.. it feels like I have been deoxing from drugs that were continually being punped into my bloodstream without my consent. I have spent more time deeply sobbing, releasing emotions that had been stored for survival than anything else. The removal of the right styloid coupled with the tethered chord release (which I will share about soon) has taken a coplete overhaul and restructuring of my nervous system. Harder than you would think!
I am able to hold conversations for longer periods of time without shutting down completely.. Not only can I comprehend what others are saying, but I am able to speak the words that come into my mind within seconds (sometimes this is still very hard, though)
Less frequent “ screaming pain attacks”, where the pressure builds and I need to put the top of my head against a hard surface, I cant stop screaming, my entire face feels like it’s exploding from within, and everything goes completely haywire. However, this is still occuring and will come at completely unpredictable times.. and will then stick around for several days.
I am able to read again! I have read 6 fiction books in the past 2 months!
Postural (upright) head pain is minimal, and I’m no longer as effeted by positioning.
light, sound, movement, smell and touch sensitivity has drastically decreased.. I still have to wear my red glasses and a huge hat outside, but there are times where I can be without them.
Increased movement and healing in my jaw and facial bones now that they are not restricted by the styloid
No longer feel like someone is choking me and cutting off blood flow to my brain from my corotid artery on the right side (the left is still symptomatic)
Less choking!
Return of my past facial structure
My head and my face still feel lopsided, which is the indication that something else is happening other than Eagle’s Syndrome
A few days ago, my mom told me she often prays Isaiah 40:31 over me.
“But those who trust in God will find new strength.
They will soar high on wings like eagles.
They will run and not grow weary.
They will walk and not faint.”
She researched how eagles renew their strength and youth. Guess how? They pick off their talons one by one to allow stronger ones to grow.
On This coming saturday, my mom and I ware boarding a train! to make another trip to Long Island. I will have presurgical testing on the 22nd, and will go under for the left styloid removal on the 24th. It is a very complex and complicated surgery, since the styloids are meshed in all kinds of nerves, vessels, arteries etc. Dr. B. is an incredible surgeon and has a team of: a neurologist who applies electrodes to every nerve that could be accidentally cut (I do have facial droop from the previous surgery, but this is said to resolve over time),, and plastics who performs the closure one layer at a time and leaves the tiniest of scars! I have confidence in what I am stepping into.
I know that every person, every situation, every inch of these experiences are divinely guided and are in divine timing. I know I am protected beyond measure by the hand of God and abundance of angels- even when it feels like abandonment.
Now that my talons are being removed, my hope is that restoration will follow and my strength will be renewed. Maybe I’ll even fly.
The Kintsugi Chronicles is a project I have been dreaming of executing for YEARS. Initially, I had the idea that I would visit Ehlers-Danlos Support groups in my van around the country. While there, I may speak or present some of the intimate photography I had already taken and have a few people in mind to shoot their reality in their homes. Well, traveling is now very hard for me. So is using a regular camera. So hard, in fact, that I have practically closed the doors on my former photography business and only take photos with my camera in short intervals when the conditions are right- usually of friends or out in nature.
When I realized I could utilize this new form of technology (thank you CLOS app!) to take photos again, I was thrilled and overwhelmed. During a pretty awful pain episode, I try to let my mind wonder into creative solutions for the things I want to do and bring into this world..from where I am at.
So, I am mulling through all of this, wondering if it COULD still be possible for this project to make headway. It’s needed. I need the community it will bring, and we all need to see and hear the resilient and healing stories of people with Ehlers-Danlos Syndrome. Each is unique and different, and each person I meet with this same condition I have blows me away with their tenacity, tenderness and strength.
I had been taking a marketing course (which was WONDERFUL, and also very hard.. because I have physically been unable to truly work in a very long time. But, the course (Naked Marketing), allowed me to connect with beautiful people AND really flesh out my vision of what I want to do with my life and how I’m going to do it. (patience meghan, patience). A beautiful human named Kellie was apart of this course, and she had started taking BEAUTIFUL photos virtually during the pandemic. I was blown away with what she was able to execute through her phone’s camera and her subject’s phone’s camera. I reached out to Kelli, and she was kind enough to guide me through her process. It was a bit daunting at first, especially since my eyes cannot look at screens for any extended period of time. Would I be able to safely do this?
The process is a bit more complicated and requires a lot more direction than I had initially thought. It takes a lot of improvisation, because you are only given what the person holding the other phone shows you. You aren’t able to walk around their home and check out the light and the settings, you work with what your given. Not only that, but you are actively coaching the individual holding the camera (or where the subject needs to place their camera) WHILE also directing and interacting with the subject. Since depth of field is very different, you also create different scenarios where depth is created, instead of just changing up your aperture. It is a true creative collaboration, and a lot more fun than I had expected.
It was obvious that I needed practice with this new art form. So, I put a call out for free shoots on my instagram stories, and Margaux was the first to respond. She said she’d been a huge fan of my photos since before I lived in Savannah (wow), and would be honored to play guinea pig with me as I learned how to set these sessions up. As my health has been HIGHLY ERRATIC and unpredictable for the past 4 years, often changing hour by hour, we set a proposed day. That day totally flopped on my end, and she was gracious and kind. Then, the following day I had about an hour of time where I knew I would be able to look at the screen, interact and have some fun. She was ready to go within 15 minutes! She was visiting her mom and dad with her kids during a snow storm, so her mom had control over the camera. It’s so interesting and fun teaching someone how to take a photo and look for light on the fly. Well, I guess I was the one taking the photos and looking for light, and she was following my directions for composition. Everything went so much smoother than I could have imagined, and we all had a really great time.
I think, as I work these into a service offering, I will create a little tutorial and examples of how to look for good light, how to compose a photograph and how to create rhythm and movement with items around the house.. and of course lots of ideas on locations and clothing. Initially, I did not look at this new avenue as a way to take family photos or portraits, but after shooting several sessions, I LOVE IT! Not only do I love it, but everyone who has interacted with this new mechanism has loved how easy it feels, how fun it is, and how “natural” them and their kids are without the pressure of a stranger amongst them holding a camera. It’s actually really really beautiful.
From Margaux
“ I wasn’t sure what to expect from a virtual photo session via phones- would the look like phone photos? would i b able to hear Meghan give direction? Would I have to hold the phone or make it stand up? Meghan answered all of those questions before our session and we had such a great time. She has that special photographer’s eye for light and shapes and spaces, and we ended up with some of the coolest photos that I will cherish forever. I would do this again in a heartbeat!
“Hey sis. I’m done with mayo, they told me to get a fucking heating pad. I cried, and then called Upledger Craniosacral Institute the next day, just to see.. they have a spot open for me in 2 weeks.. In Palm Beach.”
“I’m going to drive you. I’ve got to find a way to work while I’m there..but I’m going with you.”
The trip started off great, until Atlanta.we ordered Chick-Fil-A & ran right into their metal awning, breaking it, & it totally sounded like the world was ending. the staff just laughed at us. We kept rolling, even spotting a double rainbow.
Around 11pm, 1 hr. from Jupiter, at a gas station.Taryn used the ignition key in the door (which wasn’t even locked)and broke the key.We have AAA, but locksmiths aren’t open in the middle of the night in the middle of nowhere. SO, we got towed 1.5 hrs. to our campsite..which accidentally wasn’t booked for that night. We looked up beach parking lots in Jupiter. Fingers crossed it would work.
There we were, dropped off in a random lot, and 30 min later a policeman pulls up. he thought we were cute damsels in distress,”his station was close and he’d be on watch for us all night” . Great! We were safe! But, not from the gnats or the sharks.
It was HOT, & we had to open the van windows. My neurological system was haywire. Each time a gnat bit me, it felt like bee stings and fire everywhere. I had a panic attack & spent the night under the outdoor showers
We both went to the beach at dawn. The ocean was bliss.I heard screaming from the shore. The sound was muffled so I looked up, and a SHARK!! was jumping out of the water less than 2 ft away from me. I swam like lightning to the shore, then buried myself under the sand as a dystonic episode ensued.
T found me, “ do you want the good news or the bad news?”The good news was that the locksmith was making us a key..bad news was that the other keys AND her wallet were now lost.My good news was that I wasn’t eaten by a shark. We laughed.
The appt. was at 9,we walked in around 9:15.My therapist said, “you know we have limited time with you, and your already 15 minutes late”.we laughed..proud we were only 15 min late.
The entire trip was intense, even after each 2 hour session (that I had two of daily), my body would continue the healing work. I stacked three ketamine infusions ontop of my healing with therapists at upledger, because I knew it would help my body recover and reset… and it did! Not only that, but we were able to spend many hours swimming in the ocean before and after these sessions.. where I would be able to move freely, teach myself how to walk again, play in the waves and soak in all of the glorious salt water.
Looking back on this time and this trip, I have such immense gratitude that I was able to spend time with my sister. We had conversations we had been needing to have for a long time. Not only that, but we had a ton of fun. And fun has been a scarce thing for me to come by during this season of life. Now, a couple of years later, I try to access that feeling of fun inside of my heart, because the road has been hard and dark and fun has not been something I have been able to tangibly participate in or hold onto.
I learned so much about my body during this week. The healer within me had been opening for quite some time, but this week solidified my connection with my body. For months afterwards, I would need to spend hours in the shower working with her as she would show me how to help her realign and come back to homesostasis.
A couple of weeks later, my mom and I drove up to Pensylvania to see Dr. Lasko, a neuro-chiropractor. We worked together for 4 hours a day for a week, and he taught me incredible tools that helped me completely stop my dystonia attacks, learned to walk heel-to-toe again, worked on patterning.. and so much more.
My biggest ambition is to be able to participate in Upledger’s dolphin healing program in Mexico. CST is truly the most valuable healing tool I have yet to find, and I plan to use it as much as I possibly can.
upledger institute healing for ehlers-danlos syndrome with Craniosacral Therapy
I have known sweet Terah since High School. Then we ended up going to the same college in Nashville together. Such a sweet, tender soul and an incredible artist. I had yet to see her in her new role as a mamma, and loved witnessing her love for her kids and her children’s spunky and sweet personalities through this incredible avenue of photography.
She had control of her phone during the session, while I tried to direct her and her kids at the same time. It’s always a guessing game what kind of angles you will get, what the light looks like, how steady someone can hold their phone while wrangling kids.. and I love that “think on your feet” kind of mentality that these create. Both Terah and I had a fun time with these, and her daughter Mary even asked when her friend could come back over through the camera and play pictures. Soon, Mary, Soon.
Three years ago I lived with an artist named Dayna Anderson, who gave me the permission, encouragement, and space to create an art form that I loved. It was rocky in the beginning, but during this time I started to experiment with collaging and what that would look like for me in an art form.
Read MoreSoulmates. A word I have flippantly used and heard, especially as a wedding photographer and hopeful romantic. Are they real? How do you know? I invite you to read a little about my own experience, and you can decide for yourself
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Fill out the form below to book your kintsugi chronicles session, reach about creating your collage, and lets take some fun photos of your family together! your story deserves to be seen and heard, and I cannot wait to get to know you.
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