"My nickname is Bambi - because every time I walk, it looks like the first time."

 

"For Dorton, planning ahead financially has been a huge part of her life since she was diagnosed with two chronic illnesses as a teenager. Dorton lives with Ehlers-Danlos syndrome [...] and CRPS."

"I contrasted the way I felt about David to the way I once had pined for men who had left me waiting, and I found the intensity of my passion for David lacking. The other men avoided talking about my disability. They showed up late."

 

"'Just because someone can do a big range of movement, it doesn't mean they should be doing it. We have to assess whether that individual has the control and awareness to avoid injury before we think of big movement ranges,' says Di Bon." 

 

"In her head, Rosie questioned the symptoms she was experiencing - was this just because of inactivity? Because life was so different? Were they even real? Even her doctors seemed hesitant to believe her, encouraging her to 'just eat'"

"When Grace, 24, dislocated her elbow at work, she didn't call an ambulance or go to the hospital. Instead, she quietly went to the bathroom to pop the joint back into place before returning to her desk."

 

"We absolutely loved hearing from other spoonies out there and we got into it with Karina today. We chatted about her experience with multiple chronic illnesses, we ranted about hustle culture and how it's negatively affected the chronically ill for many years. 

 

"While her diagnosis was eventually confirmed, none of the practitioners in her region knew what EDS was - or how to treat it. [...] In 2017, she founded Rare Diseases Lesotho Association (RDLA) in order to serve others living with rare diseases in her corner of the world."

 

"Bryson is a beautiful, happy boy. But a mysterious illness means he can't walk, talk or feed himself. Scientists working at the cutting edge of genetics believe they know what's causing Bryson's disease - and think it could be reversed. Motivated by a cure, Bryson's parents search for the miracle key that could unlock Bryson's brain."

 

 

"Employers that break down access barriers develop a stronger workforce. Numbering over 1.3 billion worldwide, people with disabilities are the largest minority group." 

 

"Practicing inclusive language and design helps to get and keep customers, boost employee engagement, can help avoid embarrassing PR when the wrong words are used, and more."

by Jeannie Di Bon

"A friendly and supportive community for people around the world living with chronic pain caused by Ehlers-Danlos Syndrome (EDS) or hypermobility. Here we'll guide you through a journey to safe rehabilitation and exercise, so you can live your best life every day."

It is available on Apple, Google and as a web app! 

Find out more

Johns Hopkins University

Jon Rodis shared this important survey and message with us:

"Johns Hopkins is researching the effects of both COVID-19 and the vaccines on people with Marfan, LDS, VEDS and related conditions (including any type of EDS). You or your affected family member must be in the US."

Find out more

Something to watch or read during the holidays

Documentaries 

• Who Am I To Stop It:  "A documentary about isolation, art and transformation after brain injury by Cheryl Green and Cynthia Lopez."
• Trust Me, I'm Sick: "A short documentary series exploring life with chronic illness."
• My Beautiful Broken Brain: "After suffering a stroke at age 34, a woman documents her struggles, setbacks and eventual breakthrough as she relearns to speak, read and write. 
• Seven Songs For a Long Life: "The intimate story behind our changing relationship with death. A terminal diagnosis used to mean death within months. Modern medicine allows patients to live on for years. A passionate and touching film about uncertainty, about the future that faces all of us, following five patients who choose to sing their way through life." 
• Pain Warriors: A documentary that "examines the other side of the OPIOID CRISIS, that of under-treated pain among the patient population of Canada and the USA."

 

Books

• My Lovely Wife in the Psych Ward: "A heart-wrenching, yet hopeful, memoir of a young marriage that is redefined by mental illness and affirms the power of love." 
• The Puzzle Solver: A Scientist's Desperate Quest to Cure the Illness that Stole his Son: The story of one of the leading ME/CFS researchers in the world Ron Davis and his son, who lives with severe ME/CFS.
• Haben, The Deafblind Woman Who Conquered Harvard Law: "The incredible story of Haben Girma, the first Deafblind graduate of Harvard Law School, and her amazing journey from isolation to the world stage." 
• ​​​​​​​Laughing at my Nightmare: "With acerbic wit and a hilarious voice, Shane Burcaw's Laughing at My Nightmare describes the challenges he faces as a twenty-one-year-old with spinal muscular atrophy."
• ​​​​​​​Sitting Pretty: "A memoir-in-essays from disability advocate and creator of the Instagram account @sitting_pretty Rebekah Taussig, processing a lifetime of memories to paint a beautiful, nuanced portrait of a body that looks and moves differently than most." 
• Being Heumann - Audio Book: "Tony-award winning actress Ali Stroker reads the story of Judy Heumann - one of the most influential disability-rights activists in US history."
• ​​​​​​​Demystifying Disability: What to Know, What to Say, and How to Be an Ally. 
• The Pretty One: On Life, Pop Culture, Disability and Other Reasons to Fall in Love with Me.

 

Spoonie gift ideas

 

The holidays are around the corner, and soon, we all will be ordering presents for our healthy or chronically ill friends and family. I don’t know how you feel about this, but I always have a hard time finding the right gift. Luckily, there are a lot of great gift guides online, and I, personally, prefer to make very personal gifts, like writing a poem or creating a photo book for my close friends with short quotes that fit the images. However, I often feel my friends struggle to figure out what to buy me since such a big part of my life has to do with not being healthy. The following list has suggestions for gifts for your chronically ill friend based on my personal preference, but I’ll attach some other lists too since, just like with EDS, we are all different when it comes to tastes too.

(These are only suggestions and not an advertisement for either service; we don’t get anything for mentioning the following, and I am not linking to any product specifically).

 

Spoonie gift ideas based on my own experience:

 

1. Gift cards or certificates: Honestly, one of the easiest gifts for me are gift cards for my favorite stores, for example, a gift card for Amazon, since that’s where I have a never-ending list of medical supplies and other things that I order whenever I have a bit money saved. So if you don't know what your friend really needs, gift cards for popular stores usually are a safe bet. While not the most creative idea, I feel like many chronically ill people have such specific needs or wishes that it is the easiest to simply let them buy whatever they need themselves. Personally, I do love gift cards for everything that makes my life easier. So besides Amazon, there are tons of other options. For example, a gift card for a cleaning service that helps clean my apartment every now and then. Another really helpful service, especially during COVID, is a food delivery service. And especially when I lived in the US, what I always needed was transportation, such as UBER. Other gift certificates I always love are the ones for health-based or wellness treatments, for example, my favorite wellness swimming pool that has a floating tank - I absolutely love floating - or certificates for my favorite restaurant, my favorite museum - all the things that I and many other chronically ill people have to neglect because of health costs. If you know your friend well, you’ll figure out a more personal gift certificate; and if you just met, you can always go for a more general one, which I am sure will still be much appreciated.
2. Health-based and other subscriptions: Gosh, as a journalist, I had to sign up for so many subscription-based services over the last years. Grammarly, Canva, Vimeo, Websites, Podcast platforms and many more. It’s not too much money for each, but together, they are quite expensive. But my work is my passion and all I love, so these are important for me. Maybe your friend has a specific job that requires such subscriptions as well, and you could take over one of them, or maybe your friend needs a new software for her or his artwork which they wouldn’t be able to afford but always wanted to have. And there are other more general subscriptions as well, like Amazon Prime, Netflix or Spotify that just help to relax and get our minds off of our health issues. Subscriptions for services are often a luxury for us and something we cannot afford but would love to be able to have because it would make our life or work a bit easier. Other options are health-based subscriptions, for example, I recently tried a trial version of the Calm app for mediation, which was amazing, but nothing I could continue, and there are so many other options for Pilates, Yoga and many many more, for instance, if you scroll up a bit, Jeannie Di Bon’s new physical therapy app for people with EDS.
3. Journals or other creativity boosters: Depending on the personal interest of the person, journals or books with writing prompts are often a good option. Not only do journals help to cope with mental stress, they also distract and redirect our focus away from pain to writing, which can be helpful, but there are many other options too, for instance, drawing, coloring books, mosaic, knitting.
4. Games: I do like diving into a different world and what I found to be really helpful are escape room games which I can do at home; solving a mystery from my couch. I also love quizzes and everything I learn something from. Well, and then there are Cards against Humanity, but they aren’t for everyone, I must say. I also used to do puzzles and then create frames out of mosaic, which was very calming for my mind.
5. Items that add comfort: I can never have enough pillows, blankets, thick socks for winter, heating pads, and everything that makes me feel cozier on those couch days. One pillow I have found particularly helpful for sleeping is a u-shaped pregnancy pillow because it supports all of my joints in any body position.
6. Helpful household items: One of the last gifts I received was a vacuum robot, and I must say, this is the most helpful tool I got in a very long time. The pain from vacuuming my apartment was no joke. Other items that might be helpful are slow cookers or a Thermomix, every tool that slices veggies into different forms without my involvement. However, honestly, I am the world’s worst cook, so what’s likely more useful to me is a food delivery service with healthy pre-cooked meals.
7. Assistive devices or tools: Depending on how well you know your chronically ill friend, there might be assistive devices you can help them buy like compression stockings, ring splints, orthosis, walking canes, walkers, can openers, seat cushions, orthopedic chairs and much more. However, keep in mind that for some of those devices, you need to know the exact size, which might be tricky. Also, assistive devices are a very personal choice and often won’t be possible without the involvement of the person that needs the assistance. Nevertheless, you could help your friend get the device she or he wants.
8. Exercise equipment: Many people with EDS exercise on a regular basis and might need things like resistance bands, gymnastic balls, a comfortable exercise mat, balance boards, maybe some light weights. You probably need to do some investigating before you know what your friend needs. Maybe ask them to share their Amazon wish list with you because - if they are anything like me - they will have tons of exercise equipment on their list.
9. Handmade gifts: My personal preference are gifts that make me cry. I am not saying you should write me a book - it would be greatly appreciated though, and yes, I have written books for people I cared about - but I love a framed photo of a happy day I spent with friends or, if we have known each other for long, a book that tells our story. And with new friends, I always love a personal card with some nice words. Honestly, those personal gifts that touch the heart mean more to me than the newest Tesla at my front door. It’s about the thought, not the money.
10. Donate your time: Right after a handmade, personalized gift comes donating time. It means so much if a friend takes the time to offer me a ride to an appointment because they know I can’t drive at the moment, or if they invite me for mulled wine at a Christmas market or help me clean my apartment because they know I have a rough pain day. There are many ways to know that a friend cares, but nothing screams more ‘I care for you’ than a friend sitting in the waiting room with me and distracting me from the worries of a medical appointment.
11. I do like nice things! I can’t stress enough about the fact that I don’t want my friends to forget that in the end, even though a large part of my life centers around my chronic illnesses, I am just a regular human being. So while I am forced to spend a lot of my income on medical costs and health-related things, I do like a lot of other stuff as well. It’s not really by choice that many chronically ill people have to invest so much money in their health. I am sure many of us would prefer spending our money on vacations or a pony - ok, maybe that’s a relic of my childhood dreams. So even though I don’t go on girls' trips too often or I don’t buy myself a lot of make-up or flowers or decorations for my home, it does not mean that I don’t like those items. So invite me to a nice day at the lake or a walk at the beach, or buy me an orchid for my home or something else healthy people enjoy. I probably enjoy that too!

I hope this list was somewhat helpful for you, but if not, there are many other spoonie gift guides. Here are some examples:

Other great spoonie gift guides:

The Health Session

Counting My Spoons

Christina Wiebe

Chronically Awesome

Pain News Network

 

Happy Holidays!

Karina