“Today I found my community and they are absolutely EXTRAORDINARY!” - Highlights from Chronicon 2023
This post was written by @invisibleCRPSstargazer, a member of the Diversability Leadership Collective who was sponsored to attend Chronicon.
On May 19, 2023, I attended the most amazingly iconic seminar for chronically ill and disabled people. It was held at the XXVenue, along the East River in Brooklyn, NY. What a Chronically Iconic Day!
Chronicon 2023 merch area at the venue with "Celebrate All That You Are." printed on the wall (Photos courtesy of Laurel Creatives)
Upon arrival, I could feel my excitement grow! It was one of the most beautifully decorated venues I have ever seen. The Chronicon Production team didn’t miss a single detail. There were beautiful green, mauve, and pink sheers delicately hanging from the ceiling and the “Chronically Iconic 2023” theme painted on the white walls. There were other inspirational messages painted on the walls, mirrors, and bathroom doors, such as, “Your illness does not define you,” and “ Not every chronic illness is visible.” Peonies were gracefully placed everywhere, and there were soft velvet couches that were so comfortably inviting. There was the most incredible coffee and latte station, an easel to paint stunning women portraits, a manicure station, and above all the most warmly welcoming and friendly ladies. I knew from the start the day would be incredible and memorable!
Chronicon founder & CEO Nitika Chopra wearing a green dress speaking into a microphone (Photos courtesy of Laurel Creatives)
After an inspiring welcome from Chronicon CEO and Founder Nitika Chopra, in her beautiful green dress, the conference was off to an incredible start! It opened with the most angelically sweet voice of Nina Grae. She sang the most beautiful song about “L-O-V-E” and couldn’t have opened my heart anymore to the willingness to receive all of the love, care, and support that the day would bring. She was truly stupendous! I can’t wait to hear her perform again!
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 difficult symptom of CRPS for me is not only the severe burning nerve pain and the 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. You can’t necessarily see my pain and struggles. I often hide them in public and do more than I am medically advised. I really can’t explain why. 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!
One of the first things I noticed at Chronicon 2023, was that every accommodation for the disabled community was taken care of. There were COVID testing and mask requirements, ASL interpreters present, televisions with closed captioning, chill rooms for rest, high-backed, well-padded and spaced-out chairs for the attendees, a ramp for the stage, and many, many other considerations. I wish event planners for every conference held today would do the same. In fact, it was Mira Mariah who lost her leg at 17, who pointed out that "if we could just make things work for the most disabled people out there, it will work for everyone.” Isn’t that the truth? I mentioned Mira because she left quite an impression on me. I definitely need to step up when it comes to my awareness and advocacy in this area. I need to advocate for big changes in event management, even if it is just making phone calls to people I know who can implement change on a daily basis.
Presentation after presentation, I learned and grew. I felt my nervousness and anxiety ease. I felt my tendency to hide my disabilities in public dissipate. I was finally surrounded by a group of women who totally understood my daily struggle. The struggle of my pain which dictates my everyday life, every hour, every minute. Today I found my community and they are absolutely EXTRAORDINARY!
Sadly, many of us know firsthand 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.” Ableist statements like this are the exact reason we need to educate others. We got some great advice from Dr. Akilah Cadet, who 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.”
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 response, Dr. Darien Sutton has created TikTok Med School, because he believes that there is a tremendous need for more education in healthcare. Dr. Sutton stated, “If you speak to someone in the way they understand, they will get it.” He discussed a very helpful tool to better educate others about our disabilities and chronic illnesses, called “The Levels Of Competence.”
Secondly, Dr. Sutton emphasized communication in his presentation. He suggested that 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 and ensure your doctor understands exactly what your concerns are.
“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. Finding answers to our problems as disabled and chronically ill people can be extremely difficult. That is why it is important for us to seek out answers by finding our community. Don’t live struggling in silence and loneliness by isolating yourself. I have been doing this for 16 years. It is time for my life to change. Today is a new beginning.
Taken from the back of the room, 4 speakers on stage for the “Ignite Your Inner Activist” session (Photos courtesy of Laurel Creatives)
We also explored the topic of activism and the need to eat, breathe, 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.
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.
In our next topic of discussion, we focused on designing our ideal work week. Amina AlTai said, “Your day should be arranged around your brain and your body.” She encouraged us to ask 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?” Amina 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.
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.
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. There is a large connection between chronic illness and mental health. Minaa B. 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 hunger, a need for a connection. She also reminded us that friendship happens “organically,” not everyone has to be your best friend.
In Simmone Taitt’s practice, she focuses on the non-clinical aspects of childbirth, so she was able to ask her patients how social media affects them. 98% of the patients said it made them feel worse. Amy Keller Laird reminded us that everything we do affects our mental health and sometimes therapy can be found through humor on social media. 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.”
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. One of the questions discussed was, ”Are we making our illness ourselves?” 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.”
Similar to the other sessions today, this group of ladies continued to truly convince me and probably everyone in the room that no matter what your circumstances… “You can shine!”, “Come to Chronicon…It’s Amazing!,” “Join Chronicon…You have found your people!”
Keynote speaker Alyson Stoner seated in conversation with Nitika Chopra (Photos courtesy of Laurel Creatives)
Alyson Stoner, an Actor and Founder of Movement Genius was our Keynote Speaker. She believes the healing process between the mind/body connection should be a holistic approach. She 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 thought? 3) What is the color of my thoughts?” She created an online business known as Movement Genius. 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.
When the conference was coming to the end, it was absolutely wonderful to see Nitika 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, 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 overlooked or taken care of!
When she hit the stage, everyone was just so excited to honor her and applaud her! It was absolutely tremendous! 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!
*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!
*Lastly, one last note: There were so many great panelists and discussions I learned from today. I honestly couldn’t fit them all here, so if you are interested in reading more, the next post will include a complete summary of Chronicon 2023