It’s one month since Indian Country Today Media Network unexpectedly went on hiatus and ceased active operations. I’m in trouble. Most frustrations I have are not unique even as a multiply-disabled doubly neurodiverse Nanticoke and Lenni-Lenape Native American WOC, but they are humiliating.
When not being summarily ignored and erased, WOC on Twitter discussing Depression and other forms of Neurodiversity and Disabilities are routinely shamed for not being the “strong” women we are stereotyped as by WP and other POC. *ANGER AS AN INDICATOR OF DISTRESS* is never considered.
Jason Arnopp @JasonArnopp (Author, scriptwriter. Doctor Who, Sarah Jane, Friday 13th) is working on a book regarding professional (Fiction) writers and Depression. He asked me to contribute. This is what I had to say…
On Writing & Depression: Creative Down-swings
A well-meaning new-found long-lost relative decided to comment on my NaNoWriMo 2011 Facebook entry referring to my struggles to participate because of Major Depression: “truth is I’m strategic…” she wrote. “…the goal is achievable you have to trust yourself to make it happen.” Her sentiments are typical of the simple-minded inspiration porn that I am forced to put up with routinely. My response is always that I do what I can, when I can, but unfortunately more often than not it means struggling immensely to do not very much at all. I give myself pep talks and formulate strategies to try and be productive to no avail.
The greatest irony for me as a writer living with Depression has always been that I get my best ideas and am the most prolific when in a severe down-swing. I find that writing fiction, even Harry Potter fan fiction, is therapeutic in a way that Cognitive Behavioural Therapy has never been for me. I even managed to put this into one of my stories with a fan fiction-writing protagonist who proposed that “sometimes fiction serves a purpose in enabling people to live out their fantasies, purge their own demons or perhaps set a standard for themselves. It was only when people confused fantasy with reality that there was a problem.”Self-insertion? I won’t deny it. I’ve learned an awful lot about myself and my illness through writing and making use of my own lived experience (especially post-diagnosis in 2009). This in turn informs others including those who live with it – something still sorely needed to combat the stigma of mental illness. I would also agree that I lose myself in the gloriousness of creation process. This is even more pronounced during manic cycles of insomnia. Perhaps that’s why I have so many epic tales that remain unfinished after starting them nearly a decade ago and have failed to live up to the potential I’ve been told that I have. Depression has impacted every aspect of my life for good or ill, and my interests and ambitions as a professional writer are no exception.
Lisa J. Ellwood
@IconicImagery ( & Communications account)
#NaNoWriMo 2011 (#disability #spoonie #mentalhealth) – #amwriting (thecreativecrip.wordpress.com
#NaNoWriMo – Day 2: Not #fitforwork or anything else… (thecreativecrip.wordpress.com
@CreativeCrip in the media: #xmasathome #nyeathome interview GRAZIA Australia (thecreativecrip.wordpress.com
“Be careful who you follow because you never know where they will lead you”
~Mark Hancock, “Third Wave (Experiment)” Student
“Thinking must never submit itself, neither to a dogma, nor to a party, nor to a passion, nor to an interest, nor to a preconceived idea, nor to whatever it may be, if not to facts themselves, because, for it, to submit would be to cease
“Cowardice asks the question – is it safe?
Expediency asks the question – is it politic?
Vanity asks the question – is it popular?
But conscience asks the question – is it right?
And there comes a time when one must take a position that is neither safe, nor politic, nor popular but one must take it because it is right.”
Dr. Martin Luther King, Jr.
Regular readers of this blog and followers of the related @CreativeCrip Twitter account might recall in February of this year I rashly pulled myself out of ESA hell in favour of being self-employed. Being honest – I knew at the time that I still wasn’t ready to make such a move. Atos phoning me at home about another WCA was the catalyst. I literally could not face having to deal with them again and was so desperate that taking myself off the merry-go-round seemed like the only thing that would bring some relief.
It’s been touch-and-go ever since, largely because of the appalling lack of support from my old GPs & CMHT Psych Team. As I’ve said before, being a Native American merely Permanently Resident in the UK is not without problems. Every inquiry and appointment turns into an immigration interview – which is not only unnecessary it is quite inappropriate. One of the things that I constantly struggle with in trying to get help is that the professionals I am meant to be dealing with don’t leave their politics and prejudices at home. It’s much the same dealing with engineers from telephone companies, supermarket delivery drivers and neighbours. Everyone has really strong opinions on immigration, benefits and disability and there is no hesitation in imparting their wisdom to me no matter how malicious and ill-informed.
I’ve had to make even more changes in the aftermath of dropping my ESA claim.
- My finances were in such a dire state that I had to borrow money to be able to move house and secure it by paying six months up front. There is no feeling of failure quite like crying to your mother at the ripe old age of 46 and having her cash in some of her pension to bail you out.
- Instead of the accessible ground floor flat that cost £650/mo (downgraded from another ground floor flat that was £800/mo) in Cardiff, I am now living in an old split-level miner’s cottage in the Valleys that is nowhere near being disabled-friendly. It only costs £375/mo – great for someone with very low income. Accessible bungalows and ground floor flats come at a premium I simply cannot afford having already exhausted my redundancy on paying the mortgages of other people.
- I need to find a new GP and essentially start all over again, hoping that I’ll get the support and referrals I need to manage my complex health needs. I haven’t found the courage to actually get myself out of the house to do this – and October marks three months living here.
- When I moved house this past July I hadn’t seen my old GPs in over a year – our relationship was *that* adversarial. I just couldn’t cope with having to deal with them again knowing that, quite frankly, they really didn’t give a shit what happened to me as reflected in their attitude every step of the way.
- The meds I need I haven’t had for some time now so of course my mood and manner are more down than slightly down (I’ve never been an “up” person and never will be). Having said that – there is a difference between Clinical Depression and just being in a foul mood. I am at least astute enough to recognise which is which in myself., but of course not having effective treatment for the Clinical Depression doesn’t help. I had been on 200gm of Sertraline a day but hypersomnia won out. The fact is that the Clinical Depression *is* really kicking my tail in every way, shape and form.
- It seems that I may be an undiagnosed Aspie (and the results of Simon Baron Cohen’s online test support this along with some others) – but unfortunately before anything could be explored on that basis the old CMHT changed Psychiatrists, which they did every few months it seemed. I also missed a lot of appointments because I could not make them for physical or financial reasons or both. Making appointments three months in advance was never going to work. I also begged the CMHT to allow me to have phone conferences. This was laughed at…why I don’t know.
- I have now been on a list to see a spinal surgeon for over two years. Every time I contacted the hospital they were annoyed and told me they would get back to me. Now that I’ve moved house I will have to get a new referral.
- I am also overdue for knee surgery and this has severely impacted my mobility. Again I will have to get a new referral thanks to the house move.
- I am angry about my situation and who I am because of it all the time… and no matter what I try it just doesn’t subside. As I’ve said before, all I’ve ever asked for is the help and support I need to get back to having a somewhat productive life. I’m not the only one in such a predicament but it astounds me still that politicians from all three major UK parties have strong opinions about disabled people and work, yet they seem to go out of their way to make things as difficult and inhumane as possible for us. Everything from Disability Living Allowance to Access To Work to Working Tax Credits is such a nightmare to navigate and especially for anyone who is completely alone.
Some people say that I have to “fake it until it’s real” and other similar Mindfulness pearls of wisdom along admonishments to “play the game” – both of which go down like a lead-weighted balloon. Being fake just does not compute. I am who I am and what I am is tired… just so very tired of the never-ending fighting for absolutely everything in every part of my life. And I am acutely aware that for every person who might *get* what I’m saying there will be a number of detractors. That’s fine… I can only ever tell the truth – my truth. It’s the same for all of us.
So here I am carrying on doing everything that I am told to do and hoping against all reasonable hope that things will get better.
So… the third party who brought me into what is obviously a bogus situation and who couldn’t be arsed to reply to me on Friday now has this to say about my blog relating the details of my suspension:
“I dont even know why I am answering such silly nonsense. THis just nonsense. The _____*whose ID I have temporarily forgotten) is someone I like talking to.
@creativecrip is not. I blocked. “
That is QUITE the change from Friday where she happily tweeted my @CreativeCrip account, castigating him as an idiot and relating the woeful tale of him getting his followers to gang up on her (which others have seen, by the way thanks to searching my ID).
Funny that she’s tweeted a link to my blog calling me out – and has now protected her Twitter account!
Being a liar and a hypocrite aside, what can she possibly be afraid of?