Daphne J

@daphnejeff | contributor
I am a writer, artist, teacher and butterfly whisperer.
Community Voices
Daphne J

What Hanukkah Is Like With Hypermobile Ehlers-Danlos Syndrome

My bones slip and slide within me so tenderly that a bear hug from a friend causes dislocations and strain. Before I was diagnosed with the connective tissue disorder, Hypermobile Ehlers-Danlos syndrome (hEDS) , people requested their favorite party tricks of me, wanting me to play contortionist for laughs: “Bend like a pretzel!” Party trick? I feel like a trick is being played on my body every time a simple movement becomes a major injury. Can I even receive a hug without breaking? I wish they would ask me to bring food instead. I love to bake bread. Sometimes I hear one of my frequent injuries screaming at me to make bread, desperate for the physical therapy and healing achieved with the motion of kneading. My pain and soul wail for the meditative quality of the action of kneading. Have you ever achieved Zen  while kneading dough? This is not a party trick. I am not a party trick, easily laughed at and dismissed. I am not a sloppy pretzel, a single loose limb dislocated and looped back over itself. I am not only the sum of my body parts, my twisting limbs. I am body meshed with soul, sprinkled with knowledge. I am a vibrant, six-strand loaf of braided  challah  bread, delivering myself on a silver platter to the party for social consumption on my own terms. Each strand of the loaf is a limb of a different flavor, a different essence, braided together to create me. Each imperfect bump folded together in the final loaf creates my beautiful whole like a mountain range with variant peaks. I am a complex blend of unique strands braided together for extra strength. I am more than a party trick to entertain. I can overcome challenges when I am whole, and I am not whole without each strand. Now I bring myself to parties complete, as a whole loaf self-actualized. I become the Life of the Party through my sense of humor, intellect, and the pretty curves of my homemade bread. If needed, I can explain EDS without a pity party or laughter. I can self-advocate and request no hugs. I can move the conversation forward and return it to the party. I know my whole; I understand my collective, connective blend and bouquet. Here is my recipe. A rainbow-colored, six-strand challah bread loaf, homemade by the author INGREDIENTS: STRAND 1) PLAIN – I am honest, I mean what I say, I am direct and clear STRAND 2) “Everything But the Bagel” SEASONING – I am a sassy, kind of messy, bit of everything, I am most definitely extra in every direction I point myself, with a ripple effect of aftershocks, but always careful because I break easily like a chipped tooth STRAND 3) STUFFED ROASTED TOMATOES, GARLIC, AND HERBS – I am a complex, multilayered blend of sweet and spice STRAND 4) TOPPED WITH FINELY GROUND CINNAMON AND DEMARARA SUGAR – I am extra sweet, featuring delicate subtle nuances, with a crunchy bite. STRAND 5) CHOCOLATE CHOCOLATE CHIP – I am mouth-watering and my lovers self-indulge in me STRAND 6) ROASTED GARLIC AND ROSEMARY – My flavors are bold and intense, intelligently textured BAKING INSTRUCTIONS: Braid my six different strands together, then let me rise before baking. I puff up with pride of self as my unique limbs begin to expand into each other, a tangle of variations on the same theme. Each strand is elastic enough to wrap around the other in a braided embrace. After baking, I become one unique loaf, vibrantly striped like a zebra . Let me cool for four hours, then serve. Enjoy me as I am!

Community Voices

No Trigger Warning

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Community Voices

No Trigger Warning

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Daphne J

The Stigma of Being a Suicide Attempt Survivor

The stigma of surviving a suicide attempt feels exactly like its definition: a brand; a scar; a mark of shame. It’s the proverbial Scarlet Letter that never washes off no matter how much you succeed in life, even if you regret your action. They will never let you forget what you did. It’s a social scandal in a small community, everyone knows the basics, no one knows the details. Somehow, you become a second-class citizen of sorts, someone lesser, someone almost not worthy of a full and happy life. Why? Because you took life for granted? Because you made a mistake? People will always find ways to remind you of what you did as if you will somehow forget, or they will tell others in attempts to discredit your sanity and success. You don’t get a single break. No matter how much you heal, grow and change, surviving a suicide attempt isn’t celebrated in any direction. The focus of their fixation will forever be on what you did. Upon survival, you are about to spend the rest of your life defending your life. Ask yourself this question: Do you actually deserve to be here after what you did? The public is a tough room. When people learn that you tried to kill yourself, no matter five or 30 years ago, they assign themselves judge and jury of your personal case. They decide to determine your worth, to determine if you’re worth their time, worthy of good things, even worthy of life. They will quiz you about what were your motives. Simply, why did you do it? Who, after all, wants to be friends with someone who once tried to kill themselves? They believe it’s their business due to some false sense of self-protection, because no one wants a toxic person in their life. And you might be toxic because you made this specific mistake, because we can see what your Scarlet Letter shows. They will always point it out. They will always make sure it shows, that it’s shiny and clean. Do they want to be seen with someone wearing a Stigma Letter? A Suicide Letter? A Shame Letter. That big shiny letter “S?” “Why did you do it?” they ask, shamelessly shaming you. “Why did you try to take your own life?” Keeping it to yourself is not acceptable. People have a curiosity so intense that it tastes best when served wicked and intrusive. They keep prodding. You know that if you don’t tell them — or worse, stay quiet and tell them it’s not their business, which means you’re rude, too — they will automatically assume the worst and you will be stamped yet again, “permanently damaged.” And again, everyone will hear about how you are still unstable. Not to mention rude! “None of your business” is not an answer that flies well, despite how often you still use it. It’s combative, don’t you know? Stop being so rude! Tell me all your business! Having learned that the truth is easiest, you end up playing their game. You give them what they want by giving them the answer they want. It’s the answer that will have them respond most favorably to you. The truth. Delivered in a fashion designed to make them feel uncomfortable for a moment so they will feel a brief flash of shame at their asking, before they recover and proffer their final judgment. Shamelessly. This is how you achieve their best possible acceptance, this tragic dance. “I was kidnapped. I had an opportunity to escape. I was severely depressed after I got home,” you answer with blunt and unexpected honesty. Watching their face take it all in and figure out how to respond politely is the “fun” (satisfying?) part as you see them briefly recognize their own rudeness and feel a moment of shame at having asked. But they get over those feelings quickly. Their response is then always the same, different forms of the same response, all meaning the same thing. They deliver their barely polite verdict, always with some version of: “That’s actually a reason that is understandable; I could see how someone might respond that way, by trying to take their own life. OK, that’s somewhat acceptable. You might actually appreciate life. I’m going to give you a short leash of trust and allow you a little space to recover and grow. But if you do something I don’t like, I’m going to tell everyone how mentally ill you are because you once tried to kill yourself. Because, really, you should be ashamed of yourself.” After decades of living in the same community, you get used to being questioned and judged for it. They have all gossiped about your kidnapping and attempt, anyway, so you might as well advocate publicly for suicide prevention, tell your story publicly so you can stop being asked. As long as people already know, maybe you could help someone else? But even that isn’t enough penance for many people. No matter how much I succeed or help others — which is actually a lot more than most folx I know — some people will never grant me grace. As if it’s theirs to grant! I have apparently earned a lifetime of punishment in the eyes of most. This seems to be one of those life mistakes from which you are not allowed back up on the same level of society, forever a second-class citizen with a big letter “S” on your chest: S for Suicide. S for Shame, S for Stigma. I no longer experience daily suicidal ideation. I no longer feel shame. My stigma, my “brand,” may have stayed the same letter, but why can’t they see it blazing from my raised chest, head held high with pride: S for Strong. S for Success. S for Survivor. I have no reason to feel shame.You have no reason to feel shame.You owe answers to no one.You are allowed to be silent.You are allowed to speak.You are allowed to heal.You are allowed to grow.You are allowed to move forward withStrength,You are allowed toSucceed,You haveSurvived.You are allowed toThrive.You are allowed toNot look back.You are allowed toFly!

Daphne J

The Stigma of Being a Suicide Attempt Survivor

The stigma of surviving a suicide attempt feels exactly like its definition: a brand; a scar; a mark of shame. It’s the proverbial Scarlet Letter that never washes off no matter how much you succeed in life, even if you regret your action. They will never let you forget what you did. It’s a social scandal in a small community, everyone knows the basics, no one knows the details. Somehow, you become a second-class citizen of sorts, someone lesser, someone almost not worthy of a full and happy life. Why? Because you took life for granted? Because you made a mistake? People will always find ways to remind you of what you did as if you will somehow forget, or they will tell others in attempts to discredit your sanity and success. You don’t get a single break. No matter how much you heal, grow and change, surviving a suicide attempt isn’t celebrated in any direction. The focus of their fixation will forever be on what you did. Upon survival, you are about to spend the rest of your life defending your life. Ask yourself this question: Do you actually deserve to be here after what you did? The public is a tough room. When people learn that you tried to kill yourself, no matter five or 30 years ago, they assign themselves judge and jury of your personal case. They decide to determine your worth, to determine if you’re worth their time, worthy of good things, even worthy of life. They will quiz you about what were your motives. Simply, why did you do it? Who, after all, wants to be friends with someone who once tried to kill themselves? They believe it’s their business due to some false sense of self-protection, because no one wants a toxic person in their life. And you might be toxic because you made this specific mistake, because we can see what your Scarlet Letter shows. They will always point it out. They will always make sure it shows, that it’s shiny and clean. Do they want to be seen with someone wearing a Stigma Letter? A Suicide Letter? A Shame Letter. That big shiny letter “S?” “Why did you do it?” they ask, shamelessly shaming you. “Why did you try to take your own life?” Keeping it to yourself is not acceptable. People have a curiosity so intense that it tastes best when served wicked and intrusive. They keep prodding. You know that if you don’t tell them — or worse, stay quiet and tell them it’s not their business, which means you’re rude, too — they will automatically assume the worst and you will be stamped yet again, “permanently damaged.” And again, everyone will hear about how you are still unstable. Not to mention rude! “None of your business” is not an answer that flies well, despite how often you still use it. It’s combative, don’t you know? Stop being so rude! Tell me all your business! Having learned that the truth is easiest, you end up playing their game. You give them what they want by giving them the answer they want. It’s the answer that will have them respond most favorably to you. The truth. Delivered in a fashion designed to make them feel uncomfortable for a moment so they will feel a brief flash of shame at their asking, before they recover and proffer their final judgment. Shamelessly. This is how you achieve their best possible acceptance, this tragic dance. “I was kidnapped. I had an opportunity to escape. I was severely depressed after I got home,” you answer with blunt and unexpected honesty. Watching their face take it all in and figure out how to respond politely is the “fun” (satisfying?) part as you see them briefly recognize their own rudeness and feel a moment of shame at having asked. But they get over those feelings quickly. Their response is then always the same, different forms of the same response, all meaning the same thing. They deliver their barely polite verdict, always with some version of: “That’s actually a reason that is understandable; I could see how someone might respond that way, by trying to take their own life. OK, that’s somewhat acceptable. You might actually appreciate life. I’m going to give you a short leash of trust and allow you a little space to recover and grow. But if you do something I don’t like, I’m going to tell everyone how mentally ill you are because you once tried to kill yourself. Because, really, you should be ashamed of yourself.” After decades of living in the same community, you get used to being questioned and judged for it. They have all gossiped about your kidnapping and attempt, anyway, so you might as well advocate publicly for suicide prevention, tell your story publicly so you can stop being asked. As long as people already know, maybe you could help someone else? But even that isn’t enough penance for many people. No matter how much I succeed or help others — which is actually a lot more than most folx I know — some people will never grant me grace. As if it’s theirs to grant! I have apparently earned a lifetime of punishment in the eyes of most. This seems to be one of those life mistakes from which you are not allowed back up on the same level of society, forever a second-class citizen with a big letter “S” on your chest: S for Suicide. S for Shame, S for Stigma. I no longer experience daily suicidal ideation. I no longer feel shame. My stigma, my “brand,” may have stayed the same letter, but why can’t they see it blazing from my raised chest, head held high with pride: S for Strong. S for Success. S for Survivor. I have no reason to feel shame.You have no reason to feel shame.You owe answers to no one.You are allowed to be silent.You are allowed to speak.You are allowed to heal.You are allowed to grow.You are allowed to move forward withStrength,You are allowed toSucceed,You haveSurvived.You are allowed toThrive.You are allowed toNot look back.You are allowed toFly!

Community Voices

Niagara Falls Lights Up for DES (Diethylstilbestrol) Awareness Week

<p>Niagara Falls Lights Up for DES (Diethylstilbestrol) Awareness Week</p>
Community Voices

Start a Non-Profit Foundation for a Rare Disease Community

START A NON-PROFIT FOUNDATION FOR YOUR #RareDisease COMMUNITY

RareLaunch Workshops by NORD (rarediseases.org)

There are over 7,000 #RareDisease impacting more than 25 million Americans. More than 90% of #RareDisease do not have an FDA-approved treatment (rarediseases.org/nord-rarelaunch). Non-profit foundations and advocacy groups are needed for these #RareDisease to spread awareness, raise funds, and stimulate research. Does your #RareDisease community have a nonprofit home? Are you ready to create one? Do you have a nonprofit that needs to be taken to the next level? Are you ready to empower and educate your #RareDisease community? Learn how with these FREE virtual workshops hosted by NORD, the National Organization for Rare Disorders (Mission Statement at bottom of article).

Forming a Foundation

Wednesday, December 2, 2020

10:00 am – 2:00 pm PST/ 1:00 – 5:00 pm EST

Help give your rare community a voice. Learn the nuts and bolts of creating a nonprofit foundation from a panel of experts!

Register here

(nord.cventevents.com/event/52776133-cee2-4f9a-8c67-03de02d78...)

Research Ready

Thursday, December 3, 2020

10:00 am – 2:00 pm PST/ 1:00 – 5:00 pm EST

Educate and empower your patient community to become research ready so they can support research and development when it begins.

Register here

(nord.cventevents.com/event/b0dbe6e6-47e8-4bda-9304-9c1e9a93c...)

Following each workshop, participants will receive a toolkit including templates, checklists, and related documents to reinforce learnings.

MISSION STATEMENT: NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with #RareDisease and the organizations that serve them.  NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through #Programs of education, advocacy, research, and patient services. (rarediseases.org/about)