HELP ME GET MY LIFE BACK, SAVE MY ART
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HELP ME GET MY LIFE BACK, SAVE MY ART
INTRODUCTION
Hi, my name is Cintia Gonzálvez and I am an artist who can’t do art anymore. I am 35 years old and I suffer from increasing post viral fatigue ever since I got infected with Mononucleosis at 14. I can’t paint anymore, which also means I can’t do many other mundane things such as prepping food for myself or keeping proper personal hygiene, tasks that now fall on my husband’s ability to act as a caregiver. The virus damaged my connective tissue at cervical spine level, thus generating a compression/congestion so tight that my brain can’t correctly communicate with the rest of my body and vice-versa, causing an array of nasty auto-immune symptoms with extreme fatigue being the worst of them. My condition was eventually identified; it’s called ME/CFS or Myalgic Encephalomyelitis /Chronic Fatigue Syndrome.
There exists a surgery that can bring me my life back: craniocervical fusion, an expensive procedure that would restore the flow between my brain and body again, freeing me from my bedridden state, and that’s what I seek: to raise 76K euros to perform surgery on my spine.
Many patients who underwent craniocervical fusion have been able to get their lives back (see the examples of Jennifer Brea and Jeff Wood, two famous cases and now ex-patients of ME/CFS).
Help me become a functioning professional again by donating or, alternatively, by bidding on my NFT art for sale at Foundation! I still have so much to show to the world. Please continue reading to know more.
*screenshot of my CBCT Imaging done by Dr. Vicenç Gilete
MY STORY AS AN ARTIST (WRITTEN ON MAY 12, INTERNATIONAL ME/CFS AWARENESS DAY)
*Closeups of some of my works
I will briefly tell you my story as an artist. I got ME/CFS 20 years ago and as a chronic & progressive disease, it got me disabled 10 years ago and got me fired from my last full-time job at a videogame company.
I’ve been drawing and painting since I can remember, as my father is a painter and I had pencils and paper at hand since I was a baby. I would get As (10 here in Spain haha) in any art class during all mandatory education. I loved art and got hooked to manga and videogame art so much that I soon knew that I wanted to be a digital painter and illustrator in the future.
Around 2006, While I was still studying I was already exploring digital painting and started creating my personal artwork and character designs, which got me featured online and on physical magazine/books. These artworks are the ones I’m currently selling as NFT Art along with more recent and simpler portraits. Yes, they were all done when I was 20 years old approx, around 15-12 years ago.
*one of my most detailed works, 'Back to Life' already wanted to convey about my illness. I was never able again to spend so much energy and hours on any artwork.
But while that was happening I was also feeling more and more exhausted all the time and convinced that something was wrong. Still, blood tests showed nothing. Drawing and painting started getting unpleasant, even painful I’d say, as I’d feel extremely exhausted the following days (I didn’t correlate both things at the time thou).
Back in 2011, painting became so exhausting that it gave me PTSD-like symptoms and I completely stopped drawing. I barely grabbed a pencil or listened to music (my main source of inspiration) for the last 10 years.
As I came to terms with the fact that I would never be able to work normally again, I switched to fashion design, which was a lot less tiring and I also loved it. But it backfired as there was not enough liquidity to hire an assistant and I ended up overworking myself. In 2019, after 2 harsh years but at the same time with the company already in a sweet spot, Strange Couture had to shut down as my investor wasn’t willing to inject some more money to relieve my workload, so in the end, I got so sick that I got bedridden.
I was back to square 1 and spent more than a year with anxiety attacks every evening as I was unable to barely read, listen or watch anything due to ME/CFS, which meant I barely had any distractions. I spent (and still do) more than 20 hours a day in bed/sofa. This got me mentally exhausted but I started thinking more & more about drawing/painting & realized I was really missing it. With no other elements to distract me, my mind was naturally drawn to what I was really meant for.
I slowly started sketching again, no pressure. And thanks to the Ipad I got to keep from work, I could draw from bed/sofa. I was soon drawing some simple portraits with enough ease and that made me a little bit happier. I would still get frustrated as I'd crash the following hours/days and couldn’t paint in the way I enjoyed the most like I used to.
*One of my latest completed artworks, 'The Soul Smoker', shows my new influences after working in fashion design but as you can see it's not as detailed as my pre-disability works.
Soon after, something amazing happened. I discovered the #NFTCommunity (Crypto Art) and put up my pre/post-disability works for sale. And it worked! I'm feeling emotionally better & see the very expensive spinal surgery that some are having to hi-jack ME/CFS a possibility that was totally out of the question before.
I feel blessed to have met such supportive people in the NFT community, it has allowed me to regain some confidence as an artist and sales have given me hope that I can finally get my life back after so long. But my illness doesn’t let me move forward and it’s, once more, keeping me back from moving on.
And that’s when the idea of doing this Gofundme campaign came up thanks to some of my NFT artist friends. I think that only in the Crypto Comunity this might be achievable.
WHY SPINAL SURGERY AND WHY 76K €?
It’s been all around the ME/CFS community that many people have been able to hi-jack the illness through craniocervical fusion and sometimes also spinal cord de-tethering. This is a very new procedure that makes many patients and experts sceptical for this same reason, but it’s already been +2 years since the first patients got surgery and they have fully regained their strength. (see the cases of Jeff Wood and Jen Brea , author of the documentary Unrest that was available for a couple years on Netflix.)
This surgery can only work if the patient is a “good candidate” and for that, you must fit the following criteria: to have CCI (Cranio Cervical Instability) and benefit from cervical traction (preferably Invasive Cervical Traction, which is 6k, hence 6+70K for surgery). This diagnosis is only given at the moment by less than a dozen Neurosurgeons all around the world. We all share our experiences with them in our FB groups, post and pre-surgery, their pricings, their preferences and patient approving filtering. Luckily, one of the most famous and of the 5-6 who perform this surgery, is located here in Barcelona where I live. So I was able to do an initial crowdfunding of 2k to go and get diagnosed by him through MRI and CBCT scans of my spine.
And then it happened. It turned out I totally fit the criteria and was a candidate for surgery! (find the full diagnose by Dr Gilete in the attached PDF file).
This gave us hope but it slowly turned into nothing, as the surgery, even being the less expensive one in comparison to other Drs in the USA, was 70k €, something we couldn’t afford to pay for, even with a loan.
We have public healthcare here in Spain, a fairly good one at that, but they won’t perform this kind of surgery for a ME/CFS patient as they barely know how to diagnose it or what to do with all of us. We have nowhere to go to for proper attention in our healthcare system and even getting disability welfare is quite difficult. Yes, it’s kind of ironic that I can’t cook, do any house chores or shower daily but getting economical help will most probably not happen or take me years and lots of fighting just to get 200-400€ a month...
So I slowly started dropping the idea and fell into deeper depression and anxiety. That is until I joined the NFT community and got my first sales as an artist. I won some money and was able to cover part of the debt I had been dragging, and thinking I might be able to do something to gather the 76k I needed.
WHY GOFUNDME?
I thought I’d be able to gather the 76K for surgery+invasive cervical traction through a collection I already started working on, ‘THE IMPERFECT STRANGERS’. I find it very difficult to ask for charity after all, so that’s why I wanted to work for it. But after weeks and weeks stuck on the first piece, and given that it would require at least 20 of them, I started to get more sick and feeling scared of drawing again, I got back to that time without realizing it and so exhausted that I had to stop if I didn’t want to go from severe to very severe (that’s where you spend your days in a dark and quiet room and need to be taken care of 24/7, sometimes fed through a tube to your stomach) and there’s no way I will tolerate this happening, I don’t want my Husband to become a caretaker, so I must stop for now as much as it hurts.
*WIP of my first piece for IMPERFECT STRANGERS. It was all about lack of energy/power.
After getting suggested to do a Gofundme. I was sceptical since it took me so much effort to just get 2k (Unfortunately, I don’t have much family or friends I can go to for that). But then I realized that I was in a whole new place, a crypto community that had given me in 2 months more than I had earned in the last 10 years, so it started to make sense.
LIVING INSTEAD OF SURVIVING
And here I am!! Fighting for the 100th time to get my life back, to be able and enjoy what I couldn’t for the last 10 years, the years from my 20s to my 30s, when you’re supposed to live your life to the fullest, and most importantly to bet here for my partner, my close ones, and for myself.
*My husband Otto and my two fluffy sons Pisuke and Mochilo <3
I want to feel alive again, I need it. Enjoy things without getting a fever or staying at home while others keep moving on with their lives. I want to be able to open a bottle of water, carry a bag of groceries, walk more than 10 min from home without paying a big toll afterwards. I need to enjoy art again, I feel like a musician with no hands, a bird with no wings, a car with no gas.
Art is what keeps me going, the only activity/profession that can fulfil me completely and part of the frustration, depression and anxiety I’ve been suffering from this whole time are due to my inability to express myself artistically. How beautiful would it be if I recover and could grab a pencil, digital or not, and never ever again stop making art? It makes me cry just to think of the possibility. I can’t wait to do art and share it, to discover my new capabilities and show the world who I really am as an artist.
Organizer
Strange Cintia
Organizer
Terrassa, CT