Summary of Chronicon 2023: an amazing day for the disabled and chronically ill community to come together to celebrate all that we are
This post was written by @invisibleCRPSstargazer, a member of the Diversability Leadership Collective who was sponsored to attend Chronicon.
As a chronically ill, permanently, and totally disabled person myself, I have lived many, many years in incredible pain with an invisible medical chronic pain condition known as “ Complex Regional Pain Syndrome” or “CRPS.” The most common symptom of this illness is that it causes a terrible burning sensation in your limbs, in my case, my legs. It causes extreme sensitivity to touch, weakness, and a sensation of pins and needles in your extremities, such as your hands and feet. Often you lose control of these extremities, tripping and falling, and/or continually dropping things. The most difficult symptom of CRPS for me is not only the severe burning nerve pain and sensitivity to touch, but the constant pain signals it sends to your brain. It is extremely difficult to deal with CRPS. In fact, on the McGill Pain Index, it rates above cancer and the pain of childbirth. CRPS affects the nervous system and as a result, many other bodily systems as well. Therefore, I suffer from other medical conditions, such as, severe neuropathy, depression, anxiety, migraines, IBS, degenerative disc and joint disease, spinal stenosis, insomnia, chronic fatigue, and many others. I often experience many effects on my thinking, such as confusion, brain fog, memory loss, distraction, and poor listening skills.
My CRPS was caused by a serious spinal cord injury that affected many levels of my cervical, thoracic, and lumbar spine. I have had numerous surgeries, medical interventions, and medical devices. Doctors have tried numerous medications. All have failed because there is no cure for CRPS. It continues to send constant pain signals to my brain because that is the very nature of the illness. My back, neck, shoulders, legs, feet, and hands still hurt because that is where my spinal cord injury did most of the damage, thus affecting the areas the spine controls. Makes sense, right? However, you can’t necessarily see my pain and struggles. I often hide them in public and do more than I am medically advised. I try to remain positive, but the truth is I have suffered for years in silence, isolating myself. I have had little hope of ever accepting my disability and chronic illnesses until today!
Being chronically ill and disabled, I fight everyday in silence, with “invisible” disabilities, like so many other people. What makes our daily struggle worse, is the fact that we are constantly judged by healthy people. They truly don’t understand how our pain dictates all of our activities each and every day. They simply can’t see our “invisible” disabilities and chronic illnesses, and yet they still judge. The chronically ill and disabled community certainly needs increased awareness and systemic change, but why is the battle for understanding so difficult? Acceptance and accessibility shouldn’t be so hard to obtain. It is something we need to manage our day-to-day tasks and survive. Today’s message is all about having the audacity to thrive. I am so excited to be at Chronicon today, meet the community, and learn more!
On May 19th, 2023, a group of fabulous and caring people put their heart and souls into bringing the disabled and chronically ill from the Chronicon community, from all over the US and Canada, to meet each other face to face in many cases for the first time. They gathered to celebrate all that they are and all that they can and will become. It was truly the most amazingly iconic day…
The Chronicon venue with peach and green curtains hanging from the ceiling in a wave (Photos courtesy of Laurel Creatives)
The Chronicon 2023 venue is one of, if not, the most beautiful venues I have ever seen. It is a stunning gallery in Brooklyn, NY, overlooking the East River, called the XX Venue. Upon entering, you immediately notice the walls are painted in white with the Chronicon logo and the theme of this year’s conference, “Chronically Iconic 2023.” There are other messages of inspiration on all of the walls as well. It is truly uplifting. The main room of the venue is a very large, naturally sunlit room, filled with colorful pink, mauve, and green sheers hanging from the ceiling. There are colorful peonies gracefully placed everywhere in the room. It is so warm, calm, and inviting. There is a fabulous coffee station serving lattes of all kinds, cold brews, and coffee. It smells delicious. There is a manicure station to have your nails done if you would like. There are product samples in the bathroom for all sorts of feminine products and written on the doors and walls are some very good health reminders and inspirations, such as, “Your illness does not define you and not every illness is visible.” There are also easels set up for you to paint these incredible portraits of lovely women. There are chill rooms set aside in case you need to take a break to lie down or get away from the group to rest. There are also numerous soft couches set up behind the conference chairs for the very same purpose. The chat room is set aside for gathering with friends. The stage is carpeted and set up with a background of the Chronicon colors of green, mauve, and pink. It is also made easily accessible with a ramp, which is something you typically don’t see at an event, but of course, here the Chronicon Production team ensured every need that mattered most to our community was well taken care of. They didn’t miss a single detail. When you walk in, everyone is so warmly welcoming. You know you are safe, in very gentle hands, and in for an absolutely fabulous day!
Chronicon founder & CEO Nitika Chopra wearing a green dress speaking into a microphone (Photos courtesy of Laurel Creatives)
The CEO and Founder of Chronicon, Nitika Chopra, kicks off the day with gratitude. She is so pleased that Chronicon is finally here, because of all of the hard work and every obstacle it took her and her team to make it happen. She acknowledges that the day ahead was planned with everyone in mind. You can hear the excitement in her voice and she is wearing the most pretty green dress. She looks absolutely stunning and rightfully so proud. Her parents are in the audience and she thanks them for all of their incredible support over the years. She shares a story of how when she was 10 years old, she didn’t know what her favorite color was, or who her friends were, but what she did know was she had a chronic illness, psoriasis. That was all she knew about herself. At the age of 19, she was later diagnosed with psoriatic arthritis. Chronic illness became her whole identity at that time. The idea of creating Chronicon came out of her childhood experience and her realization that by sharing her story, she was helping others feel less alone.
Chronicon, Nitika’s, online disability and chronically ill community, is alive with many, many women who need and want to provide support, love, and care to each other, as we (me included) struggle to deal with life’s hardships and celebrate life’s successes, no matter how small they seem to others. As Nitika points out in her opening address, “Although we all came together because of our chronic illness, that is not who we are. We are so much more than that. We are not to accept being placed in the box our doctors often place us in, rather we have a right to choose so much more.” Chronicon is her “so much more.” Thank goodness for her courage to choose more for herself. Now, she is magically changing people’s lives one by one. I have a feeling that after today, she and her whole community will have changed mine.
Nina singing into a microphone (Photos courtesy of Laurel Creatives)
Nina Grae, California Native, Singer-Songwriter, Producer, Creator Group Facilitator, takes the stage with her incredible story of how she overcame a childhood eating disorder. She was going through an inner war, but finally learned how to love herself and the love finally became stronger than her fear. She sang a song that spoke to “our home and our hearts.” She sang about being “everything to yourself, choosing freedom from your mind, choosing destiny, choosing the best in yourself, choosing light, and most of all choosing love, L-O-V-E. LOVE.” I have never seen a more elegant way of opening a conference. Nina was so beautiful, graceful, and sang like an angel. I would absolutely love to hear her perform again very soon.
Four panelists seated in light aqua colored chairs (Photos courtesy of Laurel Creatives)
The conference is off to an inspiring start. You feel as if you are right where you need to be that day celebrating your disability or chronic illness, along with others who truly won’t judge you in any way and instead, will raise your spirits to levels you never thought possible…We are fortunate to have a panel discussion led by Prasanna Ranganathan, Documentary Producer, Human Rights Lawyer and Accessibility Advisor. Our panelists included Dr. Akilah Cadet, Founder and CEO of Change Cadet, Forbes Next 1,000 Entrepreneurs, Dr. Rani Banik, Integrative Neuro-Ophthalmologist, Double Board Certified, and Dr. Gretchen Hawley, Doctor of Physical Therapy and MS Certified Specialist.
We are discussing the audacity of ableist culture and how we have been taught that thriving only looks a certain way. Sadly, many of us know first hand the difficulty of being disabled and chronically ill and trying to thrive in an ableist society. We are told things like, “You don’t look disabled.” What?!!! Ableist statements like this are the exact reason we need to educate others. We are here today focusing on what it means to thrive and how we can set ourselves free, ultimately proving to ourselves and to others that we have the audacity to live our lives as we see fit, thrive, and survive. Dr. Cadet explained that “Audacity is not an action or awareness. It is a mindset. The world tells us everyday being disabled is a problem. We have the audacity to survive in spaces, places, and with people who don’t understand us and with a couple of changes of attitudes, behaviors, thought, and design, we can all feel like we belong, instead of constantly feeling like we are other.” She recommends that if we want to thrive, we have to “put ourselves first, find little things to celebrate, take time for ourselves, have a bad day, and do something that finds us joy.”
Dr. Hawley, went on to say that “Thriving doesn’t necessarily mean a go, go, go lifestyle.” In fact, she created an online program, called “The Missing Link,” so you can do whatever you can do, from an exercise perspective, on any given day. She wants us to ask ourselves, “What can we do on our best day? What can we do on our most fatigued day? Whatever that is, just do that,” she advises. Dr. Banik, commented that “Thriving means consistently reassessing what we are comfortable doing, what we don’t feel comfortable doing, and what we like to do.” Even if you have a chronic illness, it doesn’t mean you feel the same way everyday, or can do certain tasks everyday, you need to make adjustments to make yourself feel better. If you are having a bad day, do something good for yourself. You need to optimize the things you can control with nutrition, lifestyle management, and stress management. Dr. Hawley reminds us to “Be sure to listen to your own narrative and take action based on how you are feeling. Your journey isn’t linear. Some days may be more difficult than others. Other days you will be more like your best self.” Dr. Banik recommends we be proactive about seeking out supportive people who will help you mentally, physically, and spiritually.
In conclusion, our moderator, Mr. Ranganathan said it best, “Who I am is what I bring and I am damn proud of it! Just as I show up everyday with my education, my skills, my credentials, I also show up as racialized, queer, chronically ill, and as a disabled person. What I bring is value to every place and space I occupy. I bring richness to your organization, which gives you perspectives you didn’t think of. That allows us all to build a future that’s truly inclusive, truly accessible, and truly builds the future we want to see.” Isn’t that the truth?!! It is! I just love his conviction and self love!
Wow! Finally, I feel like I don’t have to “hide” my disability, my limitations, and chronic illnesses like I usually do. I can do certain activities some days, and perhaps not be able to do them on others. That’s OK! I don’t have to define myself by my disability or illness. I can choose to show them to the world or not, depending on my mood. It is my choice! I can’t let others define me. Today is the day I finally own my chronic illnesses and disability and be proud of who I am. Today is truly iconic!
Three speakers and Nitika standing together for a photo (Photos courtesy of Laurel Creatives)
Our next session was hosted by Stacy London and we welcomed Dr. Darien Sutton, Emergency Medicine Physician and Founder of TikTok Med School and Mira Mariah, Artist and Creator of the Brand Girl Knew York to the stage. Our topic was, “You Can’t Be What You Can’t See,” which recognizes that all disabilities and chronic illnesses are not visible and not all people with disabilities and chronic illnesses have the accessibility to quality healthcare and services that they so desperately need in our society. With more education and more disabled people being featured in movies, television, magazines, etc., it really helps in creating power to improve conditions for everyone. We all must remember that everyone becomes a patient at one point in their lives and will need to be seen and cared for just as our community needs today.
In an effort to improve healthcare, we must look at the world as it is today, not as it was years ago. We have all struggled through Covid and some of us now have more understanding of what it is like to be chronically ill. In order to increase that understanding, Dr. Sutton has created TikTok Med School, because he believes that there is a tremendous need for more education in healthcare. His initiative comes from his own childhood experience, when he accompanied his mother and his aunts to doctors appointments and often left uncertain of what the doctor was telling them. Dr. Sutton stated, “If you speak to someone in the way they understand, they will get it.” Therefore, he emphasizes communication and recommends it start at a very young age. He urges us to look at the resources that are available for us to learn.
Dr. Sutton reminds us to not ignore people based on your prejudice. Don’t ignore those people who are often marginalized in society for whatever reason. Teach everyone how to navigate the healthcare system and be aware that not everyone has the same privileged access. Don’t label these underprivileged patients as “non compliant,” and don’t allow yourself to be labeled as such. When you see your doctor, have a list of questions, be sure to tell them what you can and can’t do (be very specific, ie, say something like, “I am not able to do this because…”) Be sure to ask your doctor to review all of your medical options, rank them, and list the risks and benefits of each of them. Be sure your doctor understands exactly what your concerns are, your ability to access the care you need, the time constraints you have if any, and any financial issues that might factor into your ability to get quality healthcare. Dr. Sutton talked about the serious assumption some doctors make when they are unaware of some of these factors. They can falsely label you as “non compliant,” thus immediately eliminating what could be a good healthcare option for you.
Mira Mariah was also on the panel for this discussion. She lost her leg at the age of 17 and was once told, “You can’t be disabled, you are so pretty.” WOW! If that’s not the one of the most ableist statements ever! Mira told us how she was inspired by an article by Aimee Mullins, who lost both of her legs, yet went on to accomplish amazingly creative things in the world of fashion. Mira did the same thing. She loved parties so much, she went on to build a business around them. What Mira did so skillfully though was she began to bring more awareness to people that it is extremely important to ask what disabled and chronically ill people need to attend an event or party. This type of awareness was exactly what was taken into consideration at today’s event. The rooms set aside for rest, the high backed and super padded chairs set up with considerable distance apart, the COVID testing and mask requirement, the ASL interpreters, the television closed captioning, and the ramp to the stage are just a few great examples.
I think it is absolutely fantastic that Mira is constantly bringing awareness to this extremely important matter of accessibility for all. I need to step up my advocacy for accessibility, even if it is just making phone calls to people I know who could implement immediate change in the hospitality management industry. Mira’s point that, "if we could just make things work for the most disabled people out there, it will work for everyone” left a huge impact on me. Isn’t that the truth? I truly feel I have a responsibility here and I am committed to making a difference. I need to act right away!
Mira also mentioned some really great ideas that supported Dr. Sutton’s comments. She often asks her friends to help her, to make space for her, and join her at doctor’s appointments. That way she is sure everything she would like to share with her doctor gets covered and her personal needs are met too. I think that is awesome. She reaches out and asks her network or her community for support. The importance of reaching out to people who understand you and are willing to support you is something I am really taking away from today. Also, she pointed out that she educates people about her disability by asking them to recall some of their own experiences. I thought this was a simple and obvious tip, yet I never thought to bring awareness to other people in that way. I thought that was a great suggestion I could use in my day to day life to do my part in creating more awareness of our community’s everyday needs.
In conclusion, both Dr. Sutton and Mira, agree that if we are to be seen and bring about systemic change, our involvement in local politics is essential. I think we all agree it takes a “true calling,” however, Dr Sutton mentioned a tool he used to use when he tutored. It is called the “Levels of Competence.” The idea is to note the phase the person you are trying to educate is in and go from there. The Levels of Competence are…
unconscious/ incompetent- someone who doesn’t know & cannot do
conscious/ incompetent- someone who knows, but says there’s nothing we can do, no change is possible
conscious/ competent- someone who knows it exists & actively takes measures to change
unconscious/ competent- someone who doesn’t even have to think about it, they are naturally engaged, they are looking at their community, talking to their employers and friends to make things more accessible
I thought the Levels of Competence were very interesting and definitely applicable and relatable in everyday life.
One last key point was something Stacy London, our moderator, mentioned. She said, “We need to experience someone else’s lived experience, which is different from empathy. We need to understand if we are going to be constructive in their care.” I couldn’t agree more. The interest in understanding the needs of others is the key to change. First, we need to feel more comfortable expressing what our needs are, educate as many people as possible about what they are, and then stand up for ourselves. The truth is, until other people are in our shoes, we have to tell our story and we have to educate others about visibility and accessibility the best way we can.
Four panelists at the front of the room (Photos courtesy of Laurel Creatives)
“Chronically ill people are one of the largest marginalized groups in the US and we have a lot of work to do in having real equality in our everyday lives,” was our next topic of discussion lead by the following panelists: Komal Minhas, Resilience Educator, Fortune Consultant, and Host, Julia Stephanides, Workers' Rights Lawyer and Founder of Legally Holistic, Dr. Deepek Penesetti, Triple Board Certified Child, Adolescent, and Adult Psychiatrist, and Emily Ladau, Author, Advocate, and Speaker.
Finding answers to our problems can be extremely difficult. That is why it is important for us to seek out answers by finding our community. For instance, “Loneliness is also known as “Death by 1,000 Paper Cuts,” according to Dr. Deepek Pensetti. “When you have something that you do not share with others, that is loneliness.” “Loneliness is also known as “the silent struggle” and the best way to overcome it is with community,” according to Dr. Pensetti. He also added that “change happens when one person humbled by life helps another.” That is what Chronicon is all about.
We further explored the topic of activism and the need to eat, breath, and live our disabilities as advocates for ourselves and others. Komal Minhas, told us that “Activism should be based in our stories to invoke change.”Emily Ladau, who was once featured on Sesame Street as a young child because she was in a wheelchair, says that “Everyone has a story to share. You can speak for yourself, but be sure to bring others into the conversation to promote activism.” She used an analogy of throwing pebbles into the water to make waves. She wants “us all to start throwing pebbles, so we can make the biggest waves possible.”
Some other key contributions were made by Julia Stephanides, who shared her own personal experience as an employment lawyer, who needed time off for health reasons and didn’t ask for it. Instead her boss suggested it and she took a medical leave and focused on her health for 3 months. It was the best thing she could have done for herself. Her message was for, “people to step into their own power. Step into your own identity and claim it. We all need to empathize with each other and finally, “take off the mask” because it is so nourishing to say this is who I am.” After the presentation, I felt so encouraged and powerful. I finally felt empowered enough to tell my own story, live authentically, and raise my voice to help myself and other chronically ill and disabled people. I am sure many others in the audience felt the same.
Design Your Ideal Work Week session with 2 speakers seated on stage (Photos courtesy of Laurel Creatives)
In our next topic of discussion, we focused on designing our ideal work week led by Nitika Chopra, Founder and CEO of Chronicon, and Amina AlTai, Holistic Leadership and Mindset Coach, Author, and Speaker. Amina has an autoimmune disorder and Nitika suffers from psoriatic arthritis, so they totally understand the daily challenges of our day to day lives.
Amina recommended the book, In the Flo by Alisa Vitti, which discusses the biological rhythm of a woman’s body over the course of 28 days and how you can utilize it to your advantage to “feel better, work smarter, and love more.” Amina said, “Your day should be arranged around your brain and your body.” We asked ourselves interesting questions, such as, “When does your brain work best? When is your energy best? When do you do your best solo work and when do you do your best collaborative work?” Amini also described how she tends to front load her week focusing on times when her energy levels are high to get a majority of her work done, such as, the beginning of the day and the beginning of the week. She rests when she can. Amini also recommends, “working within our genius,” which means working using our innate abilities or using the skills that come most naturally to us.
It was interesting to find out that entrepreneurship is 2.5 times more likely in our community because we find it difficult to ask for the accommodations we need. Nitika told us about her experience in creating Chronicon and her thought that, “she would be there first to build it and hopefully others would follow.” Nitika also shared that, “As a leader, I have had to extend that hand, even though I am someone with a disability, I have had to reach out to other communities.” Nitika also mentioned she continues to have conversations with top leadership because she is trying to “bring other companies into the fold.”
Setting boundaries and not overstating herself by saying things like, “I just want to help,” are things Nitika tries to avoid to make better use of her time. She is also very specific about what she can and can’t do if she takes on a responsibility, task, or makes a commitment to someone. She states exactly when she is or is not available and what she is able to provide or not. That way people understand up front what her schedule is and what limitations she is working with.
I found this session to be a good reminder to myself to not continue to always say “yes,” when I should be saying “no.” I often over-commit myself to the point of stressing myself out, which in turn, physically causes me pain, fatigue, and the need to rest. I also really appreciated the book recommendation from Amini, as anything I can do to make my day to day more tolerable is always welcomed.
Five speakers standing together for a photo (Photos courtesy of Laurel Creatives)
A topic called, “All the Feels,” came next and it was a great discussion of mental health and what it means to be emotionally healthy, how social media affects your mental health, how to navigate it, and sadly how women are treated during childbirth with regard to their mental health. It was a fascinating discussion. Our panel consisted of: Melisse Gelula, Media Entrepreneur, Writer, and Mental Health Advocate. Melisse is the Author of “Well and Good- 100 Healthy Recipes and Expert Advice for Healthy Living,” and another book coming out this summer called, “Owning Our Struggles.” She was the moderator for the panel. Minaa B., Speaker, Therapist, Mental Health Educator, Dr. Ellen Vora, Board Certified Psychiatrist, Acupuncturist, and Best Selling Author, Simmone Taitt, CEO and Founder of Poppy Seed Health, and Amy Keller Laird, Founder of Club Mental, Former Editor in Chief of Women’s Health.
Minaa started the discussion off by explaining there is a large connection between chronic illness and mental health. She explained to us that “people with chronic illness need to find other people who support and understand them because social support helps combat depression and anxiety. Loneliness is a factor and it is like “ a hunger,” a need for a connection. This is where community comes in because many times, therapy doesn’t give people a liveable wage, so the help of a person’s community and their neighbors is what is needed to be a voice for the things to get the support you need, especially in marginalized communities.” Minaa recommended that “you have to be an advocate for yourself, but you also have to be proactive and have the audacity to expect this from the community as well, so it moves from self care to community care.” Lastly, she reminded us that friendship happens “organically,” not everyone has to be your best friend. I thought her comments deserved some personal reflection for sure.
Dr. Vora takes a functional approach to medicine, stating that mental health is an imbalance in the body. She learned in medical school that it is her job as a doctor to see, believe, and witness conditions regardless of what a person shows up in her office with. Which means, “If there’s no evidence for that, doesn’t mean there’s no evidence,” she stated. She takes a full portrait approach to caring for her patients. I understand that. I think if your doctor doesn’t believe you, then the doctor probably isn’t the right one for you. In my opinion, it’s time to find a new doctor.
Simmone Taitt, brought awareness about how mental health during a woman’s pregnancy is focused on the baby, not the mother. That means that after giving birth and before leaving the hospital, the mother is asked only once how they are feeling. Obviously, the healthcare system needs to change here. She also mentioned that in their practice’s case, they know within 17 seconds whether the patient trusts them to share their story and use their services. She reminded us that, “they are there not to judge, contribute to any shame, or to any uncomfortableness you may be feeling.” Because Simmone focuses on the non clinical aspects of childbirth working with doulas, and birthing centers, she was able to ask her patients how social media affects them. 98% of the patients said it made them feel worse. Interesting, but not surprising.
Amy Keller Laird reminded us that everything we do affects our mental health and sometimes therapy can be found through humor on social media. She is trying to “normalize mental health” with products on TikTok. Importantly, she reminded us to “keep in mind that before deciding to post something on social media, consider the fact that not everyone has the right to know you.”
I agree wholeheartedly. Personally, I prefer to spend my time living my life, not spend my time posting about it, but that could be a function of my age. I must admit.
Five speakers seated on stage (Photos courtesy of Laurel Creatives)
As the afternoon was well upon us, the next session was all about finding your people through a sense of community, particularly finding the love, caring, support, friendship, and laughs that go along with finally finding a group that truly understands what you go through each and every day. In this session we celebrated those associated and involved in the Chronicon community who are so fulfilled with their experience.
Here is a list of the panelists for this session: Karolina Kristina Chorvath, Journalist, Blogger, and Chronic Illness Advocate, Poojay Danay, Co-founder of Woops! Actress, and Mental Health Advocate, Stacy Ballard, Artist, Teacher, and Community Member, Tina Munshi, Chronic Illness Advocate and Community Member, and Nikita Williams, Business Confidence Coach, Endometriosis Warrior and Community Member.
One of the questions discussed in the session was, ”Are we making our illness ourselves?” My answer prior to Chronicon would be an emphatic, “Yes.” It was wonderful to hear all of the suggestions, learnings, takeaways, and experiences of this Chronicon community panel. Tina Munshi said, “I always thought about the things my diagnosis had taken away. This community has shown me that I can redefine what my life looks like, what thriving means to me, what a full life means to me, and embracing that change. I am now realizing that I want to feel more. I want to be. I just don’t want to “do.” My value isn’t tied to what I can produce in the world. It’s not my job title. It’s not my accolades that I can show you with a tiny plague. I am valued with who I am as I show up today in this space.”
Here are some of their other key remarks from our panelists:
Karolina: “Finally went to a room I fit in where everybody understood where I was coming from.”
“Without community there is no liberation”- quote by Audre Lorde
“We are so dynamic and far more interesting than our diagnosis.”
Poojay: “Chronicon is different because you can come as you are, be seen, heard, as well as, be shown how to thrive with the parts of us that makes us feel it is impossible.”
“I didn’t necessarily feel that I didn’t have community, but when I walked into Chronicon’s Zoom room, I didn’t have to explain I went to a doctor's appointment and what happened there. All I had to say was I went to a doctor's appointment. There was so much said with that statement.” “Community really meant meaning to share that experience in that same language in a way without feeling exhausted by explaining.”
Tina: “Community is coming together with something in common, whether that be something in space, or experience, or a shared value. It is caring for each other's lives and well being. We share wins and joys and yes, we share challenges and pain.”
Nikita: “Community is a place where there is no judgment. It is a safe space. I think this is what we have here. Everyone feels seen and heard. This is something special here. You show up the way you want. You don’t have to participate. You show up as you! Whatever that means in your capacity and that’s okay. That’s what is beautiful about this community. That’s what I love about it.”
“We don’t need to be in that box society puts us in. You can do whatever is right for you as long as that makes you happy. That’s how you perform your best. That’s what I’ve learned from Chronicon.”
Stacy: “The Chronicon community is trust, acceptance, the place where I find a lot of unconditional love, intimacy. I show up however I am at the time, a mess or celebrating, and you all love me just the same, and so, when the world doesn’t feel as loving and supportive as I need it to be, that’s why I am at every event. I need you guys everyday!”
“There are so many collectives you can be a part of and I am part of them all, because I need you!”
“Anything you can do to get creative…Do it more! Whatever it is!”
Alyson Stoner hugging Nitika Chopra (Photos courtesy of Laurel Creatives)
Alyson Stoner, Actor and Founder of Movement Genius was our Keynote Speaker. When she was first invited to be our guest speaker, she told us how she asked Nitika if she was sick enough to be our Keynote. The answer was, “Yes, of course, she was.” Alyson grew up as a child actress. She has kept her healthcare journey very private, suffering from migraines, TMJ, and nervous system issues. She is aware that she has “excellent access to healthcare and obvious privilege,” so she wants to be very mindful as she speaks. She wants to be sure she is “relevant to the audience,” she comments. Alyson told us her story of growing up as a 6 year old in acting, under very stressful conditions at times, and her inability to disassociate herself from stress and disconnect when she needed to, but because she was a child in an adult world, she didn’t know how to. She lost the connection to herself. She described it as “seeing her body from the outside in.” Alyson was eventually diagnosed with a condition known as, Alexithymia. She needed to learn to see her body as a “home space” then learn the mind/body connection and how that worked. She believes the healing process between the mind/body connection should be a holistic approach and asks herself the following 3 questions throughout her day “1) If I were a battery, what would be my capacity? 2) What is the speed of my thoughts? & 3) What is the color of my thoughts?”
Alyson’s personal experience and the pandemic led her and her sister to start their own company known as Movement Genius. They saw many people struggling, so they thought why not teach them the mind/body connection skills she had learned after her diagnoses. Well, that led to a following of over 100,000 people taking her classes. They have classes of all types of exercises, meditation, and yoga, focusing on things like the body connection, progressive muscle relaxation, affirmation, stressful energy, migraines, loosening tension, etc. They also have over 250 stress relief techniques and mental health video resources on the platform. They offer live classes and podcasts. Alyson taught us 2 gentle relaxation techniques to end her interview. I was so motivated and feeling so good, I wanted to rush to sign up for Movement Genius. As soon as I got home from the conference, that was exactly what I did. Thanks, Alyson.
It was coming to the part of the day, for Nitika to step to the stage and take in all of the love she deserved for all of the tremendous hard work she, her team, the singers, the speakers and moderators, the gallery owner, the photography and voice recording team, the ASL interpreters, the caterers, the sponsors, her parents for their support, and everyone else involved ( I am so sorry if I left you out, I really tried to include everyone) did to put on such an amazing day for us! All about us! Not 1 detail missed!
Resistance Revival Chorus wearing white and performing (Photos courtesy of Laurel Creatives)
When she hit the stage everyone was just so excited to honor her and applaud her! She was glowing with pride! It was so wonderful to see! It was such an amazing day, but it wasn’t over… Nitika introduced the beautiful voices of the all women Resistance Revival Chorus, who joined the stage and sang with such a spirit of joy, filling the room and your heart with love and the feeling you would leave Chronicon 2023; capable of living your life authentically and having the confidence to go through life with pride that…
You are Not Your Disability… You are so much more! Have the Audacity to Thrive!
*Photos courtesy of Laurel Creatives
*Special thanks to Nitika Chopra, Founder & CEO of Chronicon & Tiffany Yu, Founder & CEO of Diversability for sponsoring me and in supporting me in my self care and advocacy journey. I would be lost without you both! Invisible disabilities take such an incredible toll on all of us. Ladies, your understanding, inspiration, motivation, and advocacy has touched my life in ways you will never know. I am truly so grateful. Thank you from the bottom of my heart!
*Special thanks also to my editor, Jennifer Chassman of New Ground Educational Consulting, for taking the time to refresh my writing skills and do my editing. It’s been years since I’ve written anything. I appreciate your time and assistance so much!