What do you like to be called?

Janey or Janey Mae

How old are you?
31
How Old were you when you were diagnosed with Ehlers-Danlos Syndrome? How long have you been aware of this diagnosis?
I was diagnosed at 21. Im one of the few that was dx without already suspecting EDS. My diagnosis appointment was the first time hearing about it.
Where do you live? (city and state)
Central Oregon Coast (I don't share the city publicly)
How does your local climate enhance or take away from your health?
The main reason that I moved to the Oregon Coast was for the climate. I'd previously lived in a valley that had too hot of summers and tons of other MCAS imbalances like farming, pesticides, season wildfire smoke, etc. In the misty, moody cloudiness and cool sunshine of the Oregon Coast, my symptoms and lifestyle is much more stable and predictable. My soul has found it's home in the nature and peace of the shore and forests!
Would you consider yourself to be sensitive/ tender hearted and empathetic?
All in all, yes. However I personally don't use language often. I see myself as in touch with the subtleties of life, of pattern, or feeling. I live in the layers of life that many people walk by. Overall I see this as a nourishing and enhancing quality that I live with.
Have you been subjected to traumatic events or relationships in your life? How did this effect your physical and mental health?
Not sure if/how far I want to dive into this for this project. We'll circle back
Are You In a romantic Relationship?
Yes!
How long have you two been together? I would love to dive into the health of your relationship and how you and your partner navigate life with Ehlers-Danlos Syndrome. What works? What doesn't work? Does your partner help you in your treatment and lifestyle?
I've been with my amazing partner Dylan for about 2 years now. We found each other with such serendipitous timing and have built such a beautiful and nurturing life and relationship together. We are a true team in life, in adventure, in cooking, in health and in challenge. Joy is at the center of our relationship and compassion and support is our foundation. I know that for many with health challenges (and myself too in the past), the feeling of causing burden to others or having an unhealthy care dynamic can happen in relationships. And while having a complex life and body to manage is reality, the unkind perspective of burden doesn't have to be the way forward. Both of us have our life and body particularities, both of us have varying needs and challenges. The key for us has been tackling things as a team while also embracing that each person has the responsibility to know themselves, to communicate their needs, to balance what they are able and to support the other with love when it's needed. I have so much that I am proud of in what I contribute to the relationship (joy, emotional support, communication, consistency, spiritual encouragement, home routines, yummy food, silly games and an ability to adapt). My partner is an incredible, respectful, kind and goofy man! He has an exuberance for life, for us, for spiritual balance and for adventure that has brought so much light into my life. On a practical level, he has a background as a medical first responder, which has been a huge help in shared understanding and communicating medical things. He also is a licensed massage therapist and reiki practitioner, which has been a huge blessing and shared passion for us. While my partner is amazing, I have fully embraced the life strategy of diversifying my support. While my partner willing helps with a ton, I also ask others in my life to drive me to medical appointments, wonderful friends and neighbors regularly assist in grocery or other errands, etc. For my partner, I'm considerate of non essential asks and factor in the baseline of where we are both at, as my goal is for both of us be in burnout as little as possible. The more I can take things off of his plate, the more room for fun and for sustainability when needs increase for a season or he's having a more taxing time in other areas. . All in all, finding what are our individual and mutual needs and priorities and protecting those with a passion has been a key focus, because sustainability and thriving is the goal. And if aiming for that goal, wherever we land is a healthy place to be.

What are your hobbies?

Ah, so many things! Ive been in a true season of play and experimentation. This has led to many unsustainable roads as well as some that seem to be things that I can explore for ages! I absolutely love and need to creatively work with my hands. It is how my soul understands and speaks. Im particularly drawn to textures, light, patterns and natural materials. My exploration often centers around themes of budding and decay, water movement, and the way that things twist and fuse in nature. Lately i've been playing with clay, making fused barnacle sculptures. I also love exploring natural materials such as cordage from beach grass, making homemade inks/dyes from plants and earth and found object mandalas. Im also in the midst of writing a book! It has been such a glorious and transformative process. It has opened up a door to exploring and co-creating vast inner worlds where my spirit can dance. This has been especially impactful to me as my physical abilities vary. There is no boundary to what can be created in the mind and what can be explored with language.

How have these hobbies and artistic expression aided you in your healing journey?
Healing is so much more than strictly increasing function or reducing pain. And while those are wonderful and often essential things to work toward, focusing largely on them redirects focus from many other roads to contentment, fulfillment and joy. Part of healing for me has been redefining what is "health", what is "successful". I don't have to do things "normally" for this to be my version of successful. I have changed my focus from trying to "get better" to instead expanding into what is, focus on balancing and playing rather than pushing. My creativity is where a lot of my energy, where my passion, self confidence and enthusiasm often comes from. There is no right way to be creative. The value of being creative is not dependent on the medium or the product. Often there is no product or its just a step towards the next experiment. To me, I am being successful if I keep the tap flowing, if the ideas spring up and eventually complete their life cycle, if the curiosity and discovery stays alive and if I share it with whoever was meant to be a part of it. To me, I am successful if I nurture my creative spirit and honor the ideas that come into my net, all while respecting and caring for my body. That is successful, that is beautiful, that is art.
How do you express yourself artistically?
I express myself artistically the most naturally with my hands. I am a craftsman by nature. Some of my ancestry were craftsman, writers, woodworkers and shipbuilders. Creating form is in my blood and I feel connected to that lineage when I create. Im considerate of discussing physical injury, but it is a part of how i've landed where I am now with my creativity. With hEDS my hand function (among other things) has been affected. I once was fluent in surrealist pen and ink drawing and now I basically can't use a pen or brush. After I grieved this, I found being limited in how I express forced me to explore all the nooks and crannies of expression and i've found such joy in the unending ways for our souls to express. I still create with my hands, but it's at a different pace and with other things now. It's with clay, with paper and with light patterns. I create with words, with story telling and with poetic conversations. I express with movement and dance! This can be graceful and complex, or simple hand flutters. Often I look out at the horizon, at the waves or at the treetops and I envision a dancer exploring and twirling. I envision a dancer exploring the clouds above me or a miniature dancer in the grass. I dance in my mind, letting my spirit explore without physical limitation. And though some may not see all of this as art or as expression, I believe whatever keeps your spirit moving and the poignant ideas flowing is art. Whatever practice that you keep to cultivate curiousity that leaves you changed or in awe, that is art and that is a part of healing.
How have you creatively adapted your lifestyle and daily life to care for your body's needs?
Finding rhythm and routine has been a huge help in balancing my body's needs. I live simply, in a small space that's arranged in the most ergonomic way that I can. I focus on living consistently and simply and then expanding into all the beautiful corners of that lifestyle. I am still actively working on this as i've found that the easier you make each movement, the more sustainable movement will be throughout the day. The more simplified errands, diet, health routines, and chores are the easier it is to pace and to leave room for fluctuations. Also the more that "exercise" or "therapies" can be just a part of the daily lifestyle the less mental tracking is needed to remember to do them. For example: one of my lights in my bathroom is a red light, so without thinking about it, I get visual breaks regularly throughout the day and I take that as a 10 min reset. Ex: My leg strengthening exercises is a part of my routine when at the shore as I rarely remember to "exercise" at home. Sometimes adaptation looks like getting a device, an aide or a new tool to be able to do an activity. Sometimes adaptation is doing an activity at a different pace. But sometimes adaptation looks like finding a completely different activity and letting the other one go for this season. Butting up against the frustration of a previously loved activity that is still incredibly precarious or unrealistically difficult for my body to do, is not what I find helpful overall. Grieving the loss for now and shifting my energy towards exploring something else often has a better outcome. Last really important thing for me, is quietness and discernment. Without quiet, I am less connected to what my body needs. My nervous system needs stillness and quiet and i'm much better at balancing whatever pops up when my baseline isn't chronically overwhelmed. I had to learn to embrace this aspect of myself as our society pushes us to over ride the need for rest, stillness and quiet. We are culturally encouraged to overcome, to push through and to tolerate noise and information in a way far above what our bodies evolved to handle. But this is not a requirement that I choose to accept. I won't rush myself down a hallway just because the person leading me is walking super fast. I don't take in unending information just because other people choose to. I don't fill my planner or my days with tasks that i've found aren't important or helpful to me (this includes ideas given to me by medical providers. More/new strategies or treatments doesn't necessarily equal better quality of life). Much of the time I choose to operate slower, more simply, with more control of my movements and with settled energy. This is ok and this helps me live more sustainably.

Did you go to College? If so, where and what did you study?

Yes. I did shorter spurts at 4 different universities around Oregon and California. Ive completed an associates degree in general studies and about a year extra towards a Bachelors of Fine Arts.

Did your physical body impact you in what you studied and how you were able to study?
Yes! I was not diagnosed with hEDS or it's comordbidities throughout college, which added to the pattern of trying to do things and having to drop out due to confusing health issues. Looking back, dysautonomia was one of the biggest factors in not being able to sustain schooling. Studio classes for a Fine Arts Degree are also quite physical. At a certain point, even with assistance, it was not a sustainable direction at the time.
I'd love to know your 'career' or work path. How have you had to adapt to accommodate what is best for your body? Are you still able to work? Do you work for yourself? Would love to hear any advice you have for other EDSers from the path you've walked.
What are the pillars of healing in your life? What specific tools have you found that help give you a better quality of life? meditation? prayer? acupuncture? Jin Shin? Body Work? Tell all!
So far, ive found that the best foundation to a better quality of life for me is simplifying my responsibilities to a point that is comfortable to my nervous system, living quietly but in regular contact with wonderfully loving and mutually caring community, clean air and environment that is considerate of MCAS, eating red meat regularly, regular sun exposure and red lights at night, having an active creative project to let my mind play in and regular explorations in nature. I go to the shore often and have many goofy and meditative practices there! Exploring wild and ever-changing nature is a constant source of inspiration and a grounding reminder of where we are at and the awe beyond our routine lives. Though at first it was uncomfortable being seen in public, I love practicing Qi Gong and dance at the beach! Settling both body and spirit in a natural place is so much more impactful. It also tends to increase the benefit of doing those practices at home, since your nervous system now knows the settling effect of nature. Beyond belly breathing, I don't do many breath work practices but I encourage anyone to explore this if they'd like. As part of my meditative and creative practice, I often do a loose form of visualization. I visualize the image or concept that i'm exploring in art at the time, visualize sending nourishment to different places in my body or injury, I visualize and explore environments and I dance in a visualized place. This has been a muscle that has slowly grown over time and it has been so beneficial to my life! I always have creative projects going on in some way and I arrange natural materials into designs and patterns as a creative practice and tactile meditation. I love flavors, playing with herbs and teas, boardgames and houseplants. As for body work type things: my partner is a massage therapist and I'm unendingly grateful for how much that has helped me. I often have secondary muscle issues due to joint problems. His regular help in this area has both decreased pain or stiffness and also benefited many types of activity and exercise. We all need a way to help calm down the inevitable toll living takes on our bodies and massage helps me a lot with this. Physical therapy is also hugely important for joint and organ issues.
What have you tried that HAS NOT worked to help you in your healing journey?
Acupuncture caused too much bruising and wasn't very compatible at the time. Restrictive diets beyond working around food allergies can be problematic. To me its more important to eat what my body can, when it can, and I try to make it as clean as possible. Intense forms of tracking things, symptoms, food logs, etc. I find it clutters my life unless there's one or two simple or focused things that i'm wanting to keep tabs on.
Are there any Doctors or Healers that have aided you or changed your life for the better? Please share with us so we can find them too!
Im so thankful for the relationship that I have had with my physical therapist of...17 years now! The long standing relationship (before and after diagnosis) has been so valuable and creating a consistency of care that has been super impactful to my life. Together we work on structurally related issues but she also helps reset the regular organ and reflex disfunction that pops up due to POTS or MCAS.
Are there doctors/ groups/ healers we should know to stay away from?
Though online support groups were helpful initially after diagnosis (mostly for information and recommendations) it has been many years since I found being active in groups like that to be helpful. I have one body and one life to live and my mind and spirit does better when I process that reality, those pains, those injuries, etc. Just my one narrative plus those that are my close friends and community. Being in a group where huge numbers of people are experiencing and speaking of their realities, their pains and their injuries is not in balance to me or what my spirit or mindset needs to sustain this complex life.
What does resiliency mean to you?
To me, resiliency is about finding your footing again. It's not being invincible or never feeling grief or pain. Instead, it's about walking through discomfort, feeling the wholeness of what that journey is like and then finding your footing again. It's not always getting the same abilities or things in life back, but it's finding a way forward with things that nourish you. Community, love, feeling connected to others and to things outside of yourself, I think are all important for resiliency. Having a healthy inner world and a craft or expressive output is also important for resiliency.

How do you make friends? Do you often feel lonely?

Some dear friends I have met over the years and now we are all sprinkled around the world. Some I have met online in creative or health circles in the past. I love and value these relationships immensely and I know that they are true, caring and genuine friends. However, we are all meant to be a part of a community face-to-face. We are meant to be a part of a mutually supportive group that interacts regularly. When I moved to the Coast by myself a few years ago, finding those people was on the top of my list. I wrote out an intentional goal that I still have on my wall today. Part of it says "I want to fill my life and heart with calm, loving, memory-makers, dreamers, goal makers, poetic souls, encouragers...I want to find and nurture companions who are in alignment and who desire to nurture me back." I am so blessed that I found those people through art and nature organizations locally. It was challenging to find people who also wanted to be in community, it was challenging being vulnerable and transparent about my realities, it was challenging to figure out transportation when at the time I was unable to drive, but I am so so glad that I went through the discomfort. Im so glad that I found others who were stoked to find community, people that value the intentions that I set, people that inspire and demonstrate vulnerability back to me so beautifully.

What one word would you use to describe your emotional experience of this journey with Ehlers-Danlos Syndrome?
Transformative
If you could go back to the person that you were before your health declined, knowing all you have learned, would you?
I struggle with these types of questions. There are points to my life that my health declined because I pushed it in an attempt to do an activity at the pace and passion that I wanted to. I pushed myself too far, not accepting my body's needs, and those decisions progressed some of my joint damage. I believe strongly in making friends with discomfort, in letting the cold rain hit your face sometimes and in taking that longer walk when the lighting is right. It expands our boundaries and our resilience. But the consequences of being disconnected with my body and what it needed and pushing myself past discomfort is something that unfortunately I had to learn the hard way. My body was born with these genetics, but how I handle it is my responsibility and I want my best shot at living as fully possible as long as possible.
What do you think is the main thing that is lacking in regards to physician education, community education and health professional education around Ehlers-Danlos Syndrome? What do you say when people say to you "what do you mean there is no cure?!"
It is important to remember that people are experiencing what they are experiencing whether or not it has a name, an approved treatment, a cure or a class title in university. Many people working in the medical field operate under the limitation of if there isn't an approved code or medication for something, they are no longer responsible for caring for that patient, for being curious about it, for researching on their own the latest information or for advocating for that patient with others if needed. Ehlers Danlos Syndrome is complex, it can affect pretty much anything in your body from the way blood vessels stretch to the size of our amygdala. Just because EDS is complex and is still being understood doesn't mean that it and people with it aren't worth embracing. Its exactly because of that that it is worth their time. EDS patients have an immense self awareness and experimental knowledge, yet they need care and support managing the complexity of EDS often times. It is assessed right now that 1 in 500 people have one of the types of Ehlers Danlos Syndrome. And so much of it can be managed, supported and quality of life enhanced with the curiosity to learn and explore with their EDS patients.
Do you have a life mantra?
Gosh, nothing that sounds succinct or catchy. But I focus on play, rest, nourishment and joy.
Do you believe your body can heal?
I believe that our spirits can heal. I believe that our bodies are wiser and more capable than we sometimes can see. I believe with the right mix of inner and outer support that we can thrive in ways that we currently struggle. I don't believe that healing is limited to changing any one issue into a specific desired outcome. That's a nice and tidy perspective to healing but to me it limits what healing means. To me healing is broader then if I can walk again. And at one point I did learn to walk again. To me healing is broader then if I can draw again, because I figured out how to create again.
How have you cultivated gratitude into your experience?
I cultivated gratitude by coming to the conclusion that being grateful for aspects of life doesn't negate or diminish the difficult aspects of life. They are interwoven. Grief and joy are close friends and both need to be given attention. I am incredibly grateful for the opportunities and life that I am able to live. I am incredibly grateful for my mind, my self preservation, my determination and my spiritual resilience. I am incredibly grateful for the community and logistical support that I have around me. I am incredibly grateful for the slightly warmer winter day that we're having today. I am incredibly grateful that I can have the window cracked and that I can hear the slow static of the shore from my home. I am incredibly grateful for my dear friend who has invited me to write out all the of the wonderful and messy things that I've experienced with 10 years of knowing that I carry EDS. I am incredibly grateful for the projects left half done on my desk and the ideas yet to be formed in the air. I am incredibly grateful to you for having the willingness of spirit to read the ideas of someone you don't know and for listening to the lessons that your own soul speaks.
How do you find your footing when your body is intense pain and/or when life throws you setbacks?
Rest, grieve and reprioritize. And then start playing. I focus on experimenting and playing rather than "overcoming". I play without expectation of a certain outcome and let the progress be bonuses to the experience. It's also important to keep the rest mindset even after you might regain your footing. Your foundation needs to stay regardless of how much more your life can expand at the time.
What is your elevator speech for describing your genetic condition of ehlers-danlos to strangers or new friends?

How I explain EDS varies quite a bit depending of the relationship. To strangers: I say nothing unless there's a specific thing that I'm needing. I generally don't feel the need to explain WHY I need something, I just considerately ask for what I need. Ex: "I need to lay down while I wait for this appointment, can I go back into the room early?" or if someone hands me something to carry "I actually will need help carrying that, is that something you have time for?" I'll add details as needed, but generally people roll with it easier if you simplify what you need from them rather than listing all your particularities. For friends: I share much more as my physical reality is a big part of my life. I usually say something simple like " I have a genetic condition that can effect all of my joints, the things I can eat and I have to be careful around fragrances and other chemicals." Then just saying what factor in that situation is needing to be addressed. Ex "I don't think I can do stairs today, how about we go this way instead." Or "Would you mind pushing the cart for me today?" Im very open to questions from those close to me, but don't feel the need to answer questions for people who are trying to decide if what I'm asking for is valid or real. I find the kind and compassionate people in life and let the judgmental ones go on their merry way.

Who is in your immediate support system? What roles do they play in your health and life?
My immediate support system is my family, my partner, several local friends, several non local friends. I love my people! Community and friendship in life is sooooo crucial.
How have you allowed your body's uniqueness to transform you and your life?
I'm steering headlong into the quirky artsy lady on the coast! Im embracing who I am and slowly growing in my ability to be seen and my ability to display the true exuberance and contentment that I feel. Im the one with the flowy pants and low maintenance bob haircut dancing on the beach! Im the one fully clad in shiny silver ring splints with my awesome friend who carries my veggies at the farmers market. Im the one with cupboards full of herbs and all surfaces covered in crafts and candlelight. I found the joy of knowing my neighbors because I had to walk now, not drive. Im the one with the most organized little kitchen because only middle zone shelves exist. Im the one who has known the deeper depths and will lovingly swim them again with my community. Im the one who has learned some things, lost life altering things and will uncomfortably morph and transform again.
What are coping strategies you have developed over the years? (no judgement here)
Coping Strategies: Disassociation can be helpful. Whether with art projects, visualization or tv. Organizing and optimizing my space helps me manage the unpredictability of EDS. I had to get comfortable with this, but being around people you care about even when you don't feel well is so helpful to quality of life. Many times I do better alone, but it's ok to be social even if I'm not feeling well. Baths are awesome for both physical and sensory issues.
How has your journey effected and shaped your spiritual life?
For so many people, living a challenging life (especially in your formative years) changes and potentially depends their spiritually. It was definitely this way for me. From a young age I was challenged with health and social experiences that changed how I view the world, I became aquainted with loss, with disability, with regained ability, with life and death. Ive had to rebuild foundations and priorities so often. When going through this, it can bring you in touch with a deeper foundation, to a strength inside and surrounding you that is undefinable. This strength and feeling is very interwoven with creativity to me as well. The mystery of it is inspiring to me! Im personally very content leaving my spirituality fairly ambiguous, without name or doctrine. I don't believe spiritually has to be analyzed to find truth and meaning in it and I believe that this leaves the door more open to lifelong discovery and awe.

How do you balance the caregiver/parent/spouse/child (insert role here) relationship?

It honestly doesn't feel like a balance. Im active in my immediate family and as Aunty Birdy to several awesome kids! My close people are all understanding and respectful of my lifestyle and of my partner.

What books have helped you in your physical journey?
No
Are there books that have helped you in your spiritual journey?
Interactions and sharing ideas with friends has been more impactful than any book.
Are there other resources that you would like us to know about that have aided you in your life's journey with EDS?
Not that I can think of now :)
Is there anything else you'd like to share? Remember, this helps me as I prepare for your photographs AND will be used as a bit of a guideline as we move through our conversation.
I love you!
What resources would you like to recommend to other people who are diagnosed with hEDS or other invisible illnesses? i.e.. podcasts, blogs, communities, support networks, doctor networks etc.
Many years ago, I saw a piece of advice from Lara Bloom (who works for the EDS Society) to investigate and research the symptoms and aspects of EDS that are currently challenging, not to tackle it all at one time. While we all have varying and complex issues, the more you can space things out, the better. Learning about one area, trialing things and hopefully managing it better is so much simpler than tackling a bit of everything at one time.
If you could say one thing to someone who has just found out they have Ehlers-Danlos Syndrome, what would it be?
Go slow. There is a lot of information out there and things are still being researched and investigated. While that is needed and hopeful, at the end of the day, you are the expert on your own body. Learn to listen to it, listen to what the symptoms are telling you about what you need, learn with self compassion to give it what it needs and let go of the rest. If a test, treatment, trial or closed door doesn't resonate with you, respect that internal message and advocate for yourself. You are unique and what you need cannot be boiled down to a statistic or treatment plan. You are more expansive than your illness or your genetics. Find your people. Find those that resonate with your goals, your nervous system and those that treat you with love and understanding. Make friends with joy and make friends with grief. You deserve to have joy and rest in your life regardless of your abilities. You deserve to feel and process your grief.

The Kintsugi Chronicles : Embodying the Art of Golden Healing

Davi

Janey Mae

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