Thank you for taking the time to read this. I’ll start with a summary before going into more detail.
My wife Natasha has been waiting for two years and eight months now to see medical specialists for a serious multi-systemic genetic condition known as The Ehlers-Danlos Syndromes (EDS). She is in pain all of the time, cannot stand or walk for more than 10-15 minutes without the pain becoming intolerable, and has various others symptoms, detailed below. Just recently things have gotten worse: in the past month she has barely been able to digest anything, has extreme pain in her upper abdominal area, and has been vomiting bile. She’s been in the ER three times suffering from dehydration and an alarmingly elevated blood pressure and heart rate. The best the doctors at the hospital could come up with is: well, it might be a virus… even though we tried to explain to them about EDS, and that it’s the cause that needs investigating, not the symptoms. Our own research leads us to believe that it could be Gastroparesis, which is a common EDS comorbidity. Thankfully now Natasha has an appointment to see a specialist in Montreal on June 22nd – a gastroenterologist who apparently knows about EDS and is very highly spoken of.
We are in Quebec, Canada. I’m from the UK and have a visitor`s visa, so cannot seek employment here. We’ve been surviving for the past three years on very little money – I’ve been able to raise a little through busking – one of the very few things I’m allowed to do here – and I continue to seek employment locally and online. The climate here means that busking with a guitar is only really possible for five months of the year. We’ve also earnt a few extra dollars with the occasional French-English translation, and by looking after pets for people while they go on holiday – but these opportunities are few and far between. There is also my digital zine Wyrd Daze – more on that soon.
Needless to say, we weren’t expecting to still be waiting for Natasha to get the care she needs two years and eight months after we asked for it. Our financial situation has become critical. We have consolidated our debts and bills as best we can but the short of it is that for some time we have not had adequate money for food, let alone anything else. We made it through the winter with the generosity of Natasha’s family and a local FB group from which we have received a few food parcels.
The worst of it, if I may be honest, is the stress, the anxiety, the depression, the fear. This is every single day. It is difficult to describe the turmoil of living like this. And listen: I am talking about me here. I can only begin to imagine what it is like for Natasha. But despite everything she remains the kindest, most understanding, patient, and tolerant person I have ever known.
In Canada I’ve learned that its ok to ask for help if you need it. In fact, if you don’t accept people’s hospitality here, even out of politeness, they may well take offence!
We need help. This is a cry out to the universe: please help us.
Financial aid will obviously not solve all our problems, but it would ease some of the stress and anxiety.
What I’m asking for is for support via the Patreon for Wyrd Daze: the digital zine of speculative fiction + extra-ordinary music, art, & writing. Wyrd Daze is free, but the revenue from the Patreon allows me to pay contributors to the zine, and this includes myself. I’ve created some special perks connected with my own music and writing – The Ephemeral Man perk and the Zenith’s Edge perk – set at $6 (a little over £4) per month – I would like to give something back to people who are able to donate. There are also perks from as little as $1 per month to support the zine in general.
Being an optimist, I see a kind of serendipity to our situation. I am in a position to be able to be at home to care for my wife whilst doing what I’ve always wanted to do: write, make music & art, and experience and support other people’s creations. All of this I can do with Wyrd Daze. I’m also working on my first novel, more on that below. I am convinced that there is an audience willing and able to support what I am doing – I just need to find it. (For those unfamiliar with Wyrd Daze, you can take a look at the latest issue here – it includes a short story written by me called ‘Lightning and the Onu’ and two of my sound collage/music mixes).
My writing and music are a beacon to me these days. When my mind is in turmoil I find solace and meaning in my work. Everything makes sense when I am in the moment of creation. I know that what I am doing is right for me because even if I had all the money in the world, I would still be doing the same thing.
Here is the link for The Wyrd Daze Patreon.
If you would rather make a one-time donation, you can do so direct to Natasha’s Paypal: paypal.me/NatashaEDS
Anything you can give would be most welcome.
Of course, we understand that not everyone is able to donate money. Spreading the word about our situation and Wyrd Daze would be of immense help – you can help me find my audience.
Thank you so much for your time and consideration so far. I’ve tried to be brief above, and I hope it doesn’t come across too abruptly. I’d like to go into a little more detail about our situation, and Natasha’s condition.
When Natasha was young, she dreamed of visiting England. She has a fascination with history, especially the Renaissance, and especially the reign and extraordinary achievements of Queen Elizabeth I. She also has an interest in myth and feels drawn to the legends of King Arthur and the mysticism around Glastonbury, also known as the Isle of Avalon.
Years later, in 2011, Natasha sets foot in the UK for the first time. She visits London during the royal wedding of William & Kate, and then moves on to Glastonbury in time to participate in the Beltane celebrations. At the time I was a Trustee of Glastonbury`s “Library of Avalon” (probably the only publicly-accessible esoteric library in Europe – celebrating its 30th anniversary in 2018), and I was minding the library and practicing some songs with my guitar that I was going to play that evening for a fund-raising event. Natasha came to visit the Library and I invited her to the event that evening. The rest, as they say, is theirstory.
I came to Quebec in 2012, only expecting to stay for a year or two while Natasha finished her degree in Classical Studies. It was in 2015, when Natasha injured herself at work, that it started to become apparent that something was happening with her body. She was a premature baby with some development issues – as a child she had seen various specialists over a number of years, and one of the things they proposed was Ehlers-Danlos Syndromes. By this time Natasha had been poked and prodded around so much that she was fed up to say the least, and the next test they wanted to do involved taking a section of skin off of her back for analysis. When asked whether she wanted to go ahead with the procedure, she declined, and therefore was never diagnosed. It is perhaps worth mentioning here that when Natasha was ten years old, her mother passed away. The exact cause is unknown, but she died from Peliosis Hepatis – a uncommon vascular condition characterised by multiple, randomly distributed, blood-filled cavities throughout the liver.
Full debilitating symptoms of Ehlers-Danlos Syndromes often don’t materialise until mid- late twenties, or can be triggered by a physically traumatic event, and this is what seems to have happened with Natasha.
The Ehlers-Danlos Syndromes are a group of connective tissue disorders that affect the body on a multi-systemic level. They are varied in both how they affect the body and in their genetic causes, because connective tissues support the skin, bones, blood vessels, and many other organs and tissues.
Natasha`s doctor is friends with the geneticist that she has been waiting 2 years and 8 months to see. The doctor told Natasha informally that after some conversation about her symptoms, the geneticist seemed quite sure that the eventual diagnosis will be EDS. This doesn’t seem to have helped her actually getting an appointment, however.
Her major symptoms include the following:
Not healing properly from injuries – intense pain in the joints/muscles – sudden or easy ecchymoses that are hard to heal – inflammation – chronic fatigue – severe and very painful dislocations/subluxations that happen many times a week causing microscopic tears and micro-traumas (these do not have time to heal because they are repetitive), causing long-term degeneration – gastrointestinal issues – respiratory issues – cardiovascular issues.
There are also many comorbidities to the syndrome, including: endometriosis – deficient thyroid – migraines – brain fog – postural orthostatic tachycardia syndrome – mast cell activation syndrome – dysautonomia – temporomandibular joint disorder, etc.
All this means that she has to deal with severe pain and her symptoms on a daily basis. Some days are better than others. Some days are excruciating. In the last few years the pain has worsened and spread, dislocations appearing more often in different joints. She cannot stand or walk for more than 10-15 minutes without severe pain now, and even then she is at risk of dislocations – especially in her hips or knees, but can have dislocations and subluxations in any and all of her joints (especially shoulders, fingers, ankles, wrists – her vertebras slip all the time, her lower back is also really bad). She cannot do much around the house without a worsening of pain, risk of dislocation, and other associated effects. She cannot go outside without her mobility scooter or wheelchair, which needs to be pushed by someone as she can’t physically do so herself. She has to be extremely careful doing everything. Add to this the effects of dysautonomia, gastrointestinal, respiratory and cardiovascular issues, brain fog, headaches, endometriosis… as well as the psychological struggle of dealing with all of this on a day to day basis… to say that it is not easy for her is an obvious understatement.
All that doctors can do, after diagnosis, is to try to help manage the pain and monitor her overall health. The treatment is supportive and palliative because there is no “cure” – what they can do for example is: close monitoring of the digestive, excretory, respiratory and cardiovascular systems, pain relievers, occupational therapy and specialized physiotherapy, orthopaedic support devices (bandages, bracing, reinforcements, etc.). The purpose of all this is to try to reduce the chances of permanent damage, but right now we don’t have help with the majority of this.
There are 13 official types of Ehlers-Danlos syndrome. Natasha`s doctor also considers it likely that she has the “vascular” type of Ehlers-Danlos, which can cause severe and potentially life-threatening arterial, digestive and uterine complications. Or it could be another type with higher vascular risk than Hypermobile EDS. Understandably we would like to know for sure, not least because Natasha will only be classed as officially disabled once she has been diagnosed. Currently she is receiving the most basic of benefits from the government, and I am stuck on a visitor`s visa. Once classed as disabled she will receive a little more aid and might be able to apply for grants for equipment (such as braces for her joints) or the specialist care she needs, and I will be eligible to apply for permanent residence in Canada, which will allow me to seek employment. What we would both really like to do, as soon as possible, is move back to the UK. I`m missing home very much and it is Natasha`s dream to live in England.
For the past six weeks things have gotten worse for Natasha. She has been in the ER three times at two different hospitals, dangerously dehydrated and with an alarmingly elevated blood pressure and heart rate. She is having a lot of sometimes quite intense abdominal pain (liver and stomach) and has barely been able to eat, let alone digest properly. The doctors in the hospitals couldn`t do much other than rehydrate her, run a few basic tests, prescribe a pill that is supposed to ease the digestive process, and tell her to come back if it continues. Just to illustrate further the kind of desperate anxiety we`ve been going through – Natasha`s doctor has been unavailable for three months due to burnout.
Through contact with RQMO (an organisation and centre of information & resources for rare diseases), Natasha heard of a gastroenterologist in Montreal who knows about EDS and is well-liked by all who have visited him. One kind doctor in the hospital Natasha was last admitted to, took the time to listen to us and agreed to forward her file over to the gastroenterologist`s department. We have since received an appointment for Natasha on June 22nd. This feels like some sort of progress, and we are grateful for it, though it is only really the first step. We don`t know if Natasha`s digestion is going to eventually return to something like her normal (which was never that normal), if she might need surgery, or if she might end up needing to use a feeding tube, as is the case with some people with EDS and gastrointestinal issues.
So here we are.
Without Natasha there would be no Wyrd Daze and no Ephemeral Man – I started both projects when I moved with her here to Quebec. It breaks my heart every day that she has to suffer so, and I often feel powerless to do anything. We are incredibly isolated here – as is sadly often the case with those who are suffering through illness or disability, people tend to shy away, not knowing what to do or say, or not wanting to involve themselves in “all the negativity”. The stress, anxiety, depression, and fear always lurk, though we try to make the most of it from day to day. Natasha suffers with such dignity that I am sometimes ashamed of my own feelings of weakness. I also have my own medical issues. My own digestive system doesn`t work that great. I get frequent sinus headaches. Over the past couple of years I seem to have fractured something in my right foot that won`t heal properly so it pains me sometimes when I walk, as too does my left knee, which I collapsed on and injured last year. Did something to my right thumb and pulled something in my left shoulder recently, too – sometimes it never rains, but it pours. There is some arthritis and fibromyalgia in my family, and I seem to ache, pain and strain rather a lot myself these days. As I`m on a visitor`s visa I have no access to medical care unless I pay for it – which obviously we cannot do. This in itself is quite scary.
Creativity is my beacon. When I`m writing or crafting one of my sound collages, I feel a kind of bliss and everything makes sense: This is what I`m supposed to be doing. The Ephemeral Man is six years old now, and Wyrd Daze about the same. I`m also deep into my first novel, a fantasy/scifi hybrid about six god-like beings that have existed in various forms since the beginning of time, but whose time has finally come. I have created six unique worlds across a multiverse, and have a skeleton plot for the entire trilogy, including all major events and character developments. I had an incomplete first draft of 75,000 words from a few years ago and I`m reworking that now I`ve figured out exactly what the story is about and where it`s going. I`ve also started publishing world-building snippets, short stories, and other multimedia projects based on my “Zenith`s Edge” multiverse within Wyrd Daze.
Wyrd Daze is fulfilling for me on several levels:
- Zines are cool.
- Freedom of creativity. There are no rules. Wyrd Daze is a multimedia experience. This encourages me to try things I wouldn`t otherwise and push at my own boundaries.
- I can showcase the creativity of others and interview the creators – this is always a joy and honour for me. I`ve hosted some truly wonderful creations over the years.
- Via Patreon, Wyrd Daze creates a revenue with which to pay people to showcase their work. This is a big deal for me. I believe writers, musicians, artists, creators – deserve to be paid. This seems obvious but isn`t always the case. I`ve been quite coy and apologetic about the amount I`ve been able to offer people from the Wyrd Daze budget thus far, but in fact I have seen several well-produced publications/blogs/whatever that pay less than Wyrd Daze.
This is why I am asking for people to help if they can by donating per month via the Wyrd Daze Patreon – to create a sustainable revenue which boosts support not only for myself and my wife, but for the expanding creative community around Wyrd Daze. I have set up two special $6 per month “perks” – one for my Zenith`s Edge multiverse, and one for my work as The Ephemeral Man. There are also perks from as little as $1 a month to support Wyrd Daze in general. Anything you can give would be very much appreciated.
You can view all the perks at the Wyrd Daze Patreon
If you would rather make a one-time donation, you can do so direct to Natasha’s Paypal: paypal.me/NatashaEDS
If you are not able to donate, help spreading the word about this blog post and Wyrd Daze is invaluable. I`m convinced that there is an audience of people out there who would enjoy Wyrd Daze and be willing and able to support what I am doing – I just need to find them.
Sincere thanks to all of you who have taken the time to read this far. Thank you for your kindness, your patience, and your consideration. Any correspondence to me or Natasha can be directed to email@example.com