The Painful Truth: Why I Haven’t Been Writing

I’m going to come clean about why I haven’t been blogging. It’s not that I have a dirty secret to hide, but that the topic is difficult for me to talk about, in more ways than one. But last night I was sitting in my wheelchair at a Ninja Panel hosted by Amanda Palmer (@amandapalmer) where she brought up the subject of Kathleen Hannah and her autobiographical film, The Punk Singer. Hannah was known as a brash and bold riotgrrl, with a huge personality. In 2005 she quit music in the middle of a tour, just walked out with the excuse that she had nothing more to say, she’d already said everything she had in her. But that was not the truth. This story was being told in the context of women not being believed or taken seriously, and Hannah had a double dose. You see, she wasn’t out of things to express, she was ill. She’d been fighting undiagnosed Lyme disease (not unlike one of the diseases I have, fibromyalgia) for six years at that point, but with her in-your-face personality, plus the fact that people already brushed her off for being a woman, it was easier to say “I quit” than “I can’t”. No one knew what it had taken out of her to keep up her persona through the disease, so no one would believe it if she said she was too ill to carry on. (Apologies if I have misinterpreted this story, I haven’t seen the film myself, only heard the discussions in the panel last night.)

While this discussion was perhaps one minute in a three-plus hour event, I felt like I had been pierced through the heart. Not only do I know what it is like to have people not believe that you are ill, or that you are as bad off as you are, I also know what it is like to put on a “healthy” persona but also to lose your ability to express because illness has taken it from you. So while this probably won’t surprise too many people — after all I am The Sick Chick — I’m going to be painfully honest about it in ways I don’t usually do anymore. People on the internet usually turn away and don’t want to hear sob stories about sick people, but it needs to be shared and I hope that in the telling I can reach even one person who doesn’t already get it.

I used to be a professional journalist, before I went to law school (which is even more writing). While in law school I became an editor of several official university publications, including the uni magazine and some academic journals and books. My hobby was online games; this was in the day before the pretty graphics, where my flavor of online gaming was just telling collaborative stories, acting out your own character’s part in the midst of other characters and storylines, all in text form. It was just a form of fiction writing. This hobby consumed more than a decade of my life and led to professional writing gigs in game books and magazines, but more importantly it meant I was writing up to 16 hours a day, and that was on my days off!

In 2005, the same year that Hannah quit, I had to give up online gaming of that sort because my hands could not manage to type that much and voice dictation software was not advanced enough for that heavy a usage. I cannot begin to describe the hole in my heart, that I feel even now. I still have nightmares from time to time of seeing text roll up the screen and my hands can’t keep up with responses. I consoled myself then with blogging, which I had begun in 2001. But by 2009 even that was becoming difficult. Keeping up with reading other blogs, commenting, replying to my commenters, etc. was draining. I loved it, I loved the people, but I just couldn’t do it anymore. I was experiencing cognitive decline, for reasons we’re still not sure of, and my mind just couldn’t process everything. Again, another hole was ripped out of my heart. I moved to Twitter full-time (I’d been on since 2007) because my cognitive powers could allow me 2-3 sentences and short back-and-forth conversations — perfect for the tweet — but anything more than that was a challenge.

2012 I tried to take up blogging again. I started well enough, and even wound up writing for other blogs and publications. But within just a few months the anxiety of deadlines and the fact that it was taking me four times as long as my colleagues to produce the same work led to countless hours of tears from frustration, fear, and anxiety. Since none of this work was a real paying gig I felt I had no choice but to give it up or risk triggering a full depressive episode (I am bipolar). Around that time even Twitter became hard to manage and I stopped being on it countless hours per day and it slipped to just an hour or two at most.

August of 2012 led to the lowest points ever in my writing ability. I went on a medication that helped my body but sucked out my mind. It crept up on me gradually, so while I knew I was struggling more and more with memory and writing — even reading my email was out at this point, let alone replying — I didn’t associate it with the medication at first. It got to the point where I had an incredibly important document to produce and it would take over an hour to write a single sentence. There are no words that can truly express the despair I felt, and the anxiety and fear of not getting this document done on time. My brain was more broken than ever before and I couldn’t even communicate with the outside world. I was trapped in my bed by my body having a flare that lasted four months and I was trapped in my head by the combination of my cognitive impairments and this drug that was robbing me of the very last dregs of my ability to speak and write.

Remember, now, that I used to be a professional writer. Maybe then you can imagine how I felt that once again, having lost a great deal of the functionality of my body, now I had lost the use of my mind. Again, there are no words to adequately describe this. I felt utterly useless as a human being and like I would never achieve anything ever again. My dreams of founding a charity to bring the healing power of creativity to other chronically ill adults seemed completely impossible given the state I was in.

Fortunately, we realized the negative contribution the medication was making and I was able to slowly taper off of it over a period of months.  It’s been almost two months now since my last dose and I can feel synapses firing properly again. It is still a huge struggle to write; I have no idea if this blog will ever take off again, but as I will explain in a later post so much of success in the directions I want my life to now go depends on me being able to write consistently and with my former skill. I have a psychiatrist who is working with me to try to reverse the cognitive impairments, but it will be a long road and there are no guarantees. I used to have an IQ of 152, but I am fairly certain that if tested now I’d at best test as average and on my worse days probably below. That is a heartbreak that also cannot be explained in words. It is a howling wind of pain that blows through my soul every day. It is a grief that does not heal.

There is still what I call the invisible wall that comes between me and my words. I *want* to speak out, but so much of the time when I try I feel myself slammed against some invisible barrier that stops me dead in my tracks. I’ve gotten so used to this wall that it doesn’t make me cry every time anymore, indeed I just accept it as part of what I have to go through just to live. But I wanted to let you all know that it is there. To know that when you do hear from me, as I sincerely hope you will more and more in days to come, that it is not easy.

But I also believe in the power of art and writing to heal, so I am going to attempt to tackle this wall with brute force. I hope you will hold my hand through this process and also forgive silences when the wall stops me. I know I need to build my “platform” in order to do the good that I want, in order to establish my charity on sound footing, because without platform there is no support and without support I am only one voice, barely squeaking out a few notes into the wind.

Please bear with me. And please consider helping me with my charity efforts, as I will outline again in my next post (To Crowdfund a Charity or Not?). As inspired by @amandapalmer, I am asking. I can’t do any of this alone. I need you all to help in my journey.

Thanks for your time in reading this. If anything was unclear, or you want more information, please ask. But please also keep in mind that it may take me a few days to reply. My brain can only do so much in any day. Thanks.

Can you give me a hand?

A "missing" hand
I really need a hand...

I’m struggling.  My health has been worse than usual this past year and although I don’t talk about it much it has been very hard.  The depression is coming back after having been at bay for a long time and I’m spiralling downward into malaise.  I want desperately to get Healing Arts (formerly The Sick Chick Crafts for Causes) up, running and fully legal (and thus tax-deductible!) but it’s a lot more work than I had initially imagined.  It will be very worth it, but…like the people I want to help, I’m in a bad place right now and could really use a little lift.

Can you give me a hand?

I mean that literally! I’m asking you and anyone, everyone, young and old to send me a cutout of a hand, decorated any way you please and made from whatever materials suit your fancy.  I’ll use these hands to cheer myself on by affixing them to the bare walls in my room and also sending hands to anyone else who seems to need one. Please write your name or nick on the back so I/we will know who is lending their hand to this project 🙂 (And if you send other contact details I will write you a thank-you note eventually!)

A cut-out in the shape of my hand, coloured with watercolour and markers
Here's one I made earlier...

Please send hand images to:

The Sick Chick
P.O. Box 904
Cary, NC 27512-0904

I will be ever so grateful and hopefully this will be what I need to get myself out of a funk and get cracking on helping others!  Many thanks in advance!

Items to Craft for Chronically Ill Friends & Relatives, Part One

National Invisible Awareness Week has ended but it’s still National Pain Awareness Month and right now I’m well aware of my pain so I thought I’d blog instead 😉  In honour of my Crafting for Causes charity program (which has NO donations yet *sniff sniff* — whatcha waiting on people??) I thought I would list just a small sampling of items that could brighten an ill person’s day and/or make their lives easier. Of course some of this depends on what kind of illness they have but you’d be using your judgement, of course!

Papercrafting

  • Handmade cards and postcards (can involve sewing/quilting/fabric/etc too!)
  • Signs of good wishes to hang up near their bed/lair
  • Mini-books filled with inspirational quotes
  • Personalized stationery to make it easy to write notes to friends — with postage included
  • Blank journals to record their health, feelings, dreams or wishes, etc.

Quilting

  • Lap quilts for wheelchair users (I like 30 inches square finished size)
  • Small throws for lounging on the sofa
  • Bed quilts, especially for the hospitalized to bring to colour to the room
  • Padded cases for eyeglasses
  • Thick quilted “pot” holders to be used for hot OR cold items (my hands can’t handle taking things out of the freezer, for instance)

Sewing

  • All kinds of warmers made with grains/rice inside of fabric that can be microwaved; these can be shaped for certain body parts or square for a generic heating pad
  • Nice pillows to put said warmers into, or just in general
  • Fleece hats
  • Extra-warm Mittens
  • Bed jackets and shrugs
  • Bags and totes for carrying things to appointments
  • Bags, “backpacks” and other items to add storage space to a rollator or wheelchair
  • “Slanket”/”Snuggie” type throws
  • Cute animals to cuddle up with — yes even adults like to sleep with a friend sometimes! — ideally very soft as well

Knit/Crochet

  • Lap blankets for wheelchair users (see above)
  • Throws for lounging
  • Shrugs and cardigans for those who get cold easily
  • Gloves, mittens or fingerless versions thereof
  • Wrist, arm, legwarmers
  • Hats, especially soft ones that are washable but don’t have bulky brims (for those of us who have to sleep in hats a bump at the brim can be uncomfortable)
  • Handmade socks
  • Prayer square where appropriate
  • Cute, soft animals (see above)

Toiletriescheck with the person first for allergies/sensitivities!!

  • Lotions for those with skin problems
  • Unscented items for people allergic to perfumes
  • Exfoliating items for people who can’t bathe/shower every single day (dead skin can build up quickly)
  • Aromatherapy blends for relaxation, stress reduction, mental clarity, etc.
  • Bath blends without harsh chemicals; salts are usually good for this
  • Massage oils safe for use on the temples and forehead or warming or cooling ones for the body

Beading

  • Bookmarks
  • Stretchy jewelry for people who have trouble with hooks and clasps
  • Pretty, sparkly things for women who may be feeling unfeminine b/c of illness or side effects of treatment
  • Prayer beads where appropriate
  • Tiaras to make them the Queen of their Domain 🙂
  • Medic alert IDs — make the medic sign very visible
  • Awareness jewelry relating to their specific disease(s)

This is really a small sample of things that can be made, and things I plan to make for others.  Watch this space for more ideas in the weeks to come, and of course feel free to ask any questions about the items listed or to make suggestions of your own!

Sick Chicks, Chaps and Children Who Craft — Represent!

I’ve been trying to make a list of everyone who has publicly acknowledged that they have a chronic illness and who also are crafters.  Maybe they make their living crafting or just use it to cope with the everyday stresses of living with illness.  However, this is obviously an impossible task — there are millions of people who fit this category!  So I’m just going to do what I can and start the ball rolling!

Since this is Invisible Illness Awareness Week, I can’t think of a better time to start ah, taking names 😉

If you are, or know of, a person who is out about living with chronic illness (please don’t divulge secrets not your own!) who is into crafting, please please comment!  Leave the blog, website, Twitter, Facebook, Etsy or other URL where we can find them so we can spread the encouragement!

Invisible Illness Awareness Week 2009
Invisible Illness Awareness Week 2009

And please don’t forget that I am crafting for the chronically ill & their support teams, donations of craft supplies & postage greatly needed!!

Crafting for Causes — Check out my new charity work!

In case you haven’t seen yet, I have pledged to craft little gifts for chronically ill people, their carers and medical professionals that deserve our thanks. I am in need of craft supplies, but anything else anyone might want to send to be distributed to these lovely people would be greatly appreciated!!! Chronically ill adults benefit the LEAST from programs designed to give cheer to the sick. Most of the money and effort go to children or adults with terminal illness or cancer, while funds for chronic illnesses go to research. Research is a good thing, but when you’re feeling isolated and lonely it’s not much to go on.

Since I know most of my readers ARE chronically ill people, what I would really like from you is just to spread the word that I am looking for supplies. Please tell everyone with excessive stashes or any craft supply companies or book publishers who might be able to donate. Thanks so much for your efforts!!!

For more info please see: http://thesickchick.com/causes