Creativity and the Fear of Being Forgotten

a piece I only previously attached to the bottom of one of my posts. quote by David Bate.

It was about seven months ago that I made a post begging the question, What all could you do if you just changed your expectations of how to do it? And I affirmed that I was bringing out my art supplies again, because I could still paint if I relaxed the restrictive expectations I put on myself of how it needed to be done.

And thus, over the course of two months, I made this watercolour painting.

Then last month, I had a major epiphany.

It started as a sort of existential crisis, seeing a different butterfly on Instagram which I immediately wanted to paint…until I thought about the actual process of doing so. Then I became very drained, and I couldn’t tell if I just didn’t like painting anymore, or maybe I was just really overwhelmed by all the work it would take. Those seemed the most probable reasons.

And yet the entire week prior, I’d been schooled by the Universe from every corner on the differences between who we once were and who we become. How we progress into completely different people, if we’re doing it right. Even the “us” of several years ago, we appear the same, but–to pull from an episode of How I Met Your Mother–it’s as if we are our own doppelgänger, after having changed so much.

I mulled over my mysterious lack of artistic enthusiasm all day, a bit thrown off at the idea that someone with so much talent might not want to “art” anymore. Do people really just stop being artists? How was it that I identified such a need to paint, yet all I felt was frustration? How was that even possible?

Then something happened that knocked me off my metaphorical feet.

There was a PBS special airing the ballet documentary Dancing at Jacob’s Pillow: Never Stand Still, and at the moment I caught it, they said something really profound about one of the men in the business.

Ted Shawn, toward the end of his life, wrote,

“It is a paradox that I, who have a strong desire for what will endure, and will be permanent, should have chosen the art form which leaves nothing but memories. And yet I am satisfied this is my medium, and my destiny.”

It was exactly what I needed to hear to tie together all my pondering of the past several days. The Universe had been preparing me to let go of who I was trying to force myself to be just because it’s who I’d always been, and embrace all that I was now. And in the moment I turned on the television, I was receiving a wake-up call.

Hearing that segment helped me recognize I wasn’t so much being an artist as I was clinging to the idea of being an artist, to escape a common human emotion.

I realized that I wanted to paint and produce art, not out of a genuine desire and love of the process, but out of fear of not leaving something behind more than memories.

That was a difficult pill to swallow, but finally everything made sense. I was frustrated because the act of painting, in that moment, was no longer about expressing joy, but controlling anxiety.

And maybe I’m not as much of an artist as I used to be, but I am multifaceted, as are we all. Since relieving myself of that burden and seeing things as they are instead of how I want them to be–or otherwise through the lens of fear–I also realized that over the years I’ve slowly made the transition from Artist to Writer. And I say transition because in the past I’ve always been an artist first and a writer second, but now, my creative spirit flows much more effortlessly through the medium of words. I also enjoy being an amateur photographer; the key word being enjoy.

I have the desire to create, and I still very much enjoy painting, and photography, and writing. And this time, I know better than to jump from one label to the next with the implications that it will save me from the fear of being forgotten.

a piece I did a few days ago, out of the blue, for fun, with random inspiration
a piece I did a few days ago, out of the blue, for fun, with random inspiration

a rainbow at night

The Choice of Someone With Progressive Disease to Stop Treatment, Part 1 of 2: Wrestling With the Universe

the-choice-of-someone-with-progressive-disease-to-stop-treatment
[ estimated reading time: 4 mins 20 secs ]
I did not arrive at my decision lightly. I experienced… Ah, I experienced a lot. The Caring Connections organization put together a great example list of the emotions involved in living with serious illness:

Emotional changes that you may experience include:

  • Fear – about what will happen as your illness progresses, or about the future for your loved ones
  • Anger – about past treatment choices, about the change in diagnosis
  • Grief – about the losses that you have had and those to come
  • Anxiety – about making new decisions and facing new realities
  • Disbelief – about the changes that will be taking place
  • Relief – about ending difficult treatments and setting new goals for care”

They also have a list of various myths, truths, and things to remember, such as:

Myth: Accepting that this illness cannot be cured means that “nothing more can be done.”
Truth: When the focus shifts from cure to care, a great deal can be done to relieve physical pain and emotional suffering, and to ensure a good quality of life.
Remember: Have conversations with your loved ones about what you do and do not want. Designate a healthcare agent to speak for you in the event that you can no longer speak for yourself.”

I can talk about this more clearly and rationally now, after several weeks of living with my decision, but like I wrote earlier: It was anything but easy. (This entire post is quite embarrassing to write, actually.) I experienced extreme guilt for not wanting to get treatment.

Since I don’t believe in coincidence, it was difficult to figure out whether I’d learnt of the MTHFR gene mutation to get it treated so I could get back on Lyme treatment (but I thought of this more out of habit than any true desire or intuition), or to just be more aware of how I could help my body… I was living too much in the trying to find the Lesson and not enough in the living the Experience (which ultimately gives you the lesson). I heard something like that during Oprah’s Super Soul Sunday several weeks ago.

I knew I’d lose my mind if I tried to do “the Lyme fight” again.

I’m 99% sure I’d lose my mind if I fought my own body at all, at this point, to be honest.

So I didn’t know what I was “supposed” to do. I knew what I wanted, but I felt guilty for wanting it. Probably as a remnant from my more religious upbringing, I actually felt like God would be angry with me for my decision. I automatically felt like choosing to live without fighting disease, would be choosing to die, so how could The Universe possibly support me in that? I felt like I couldn’t trust myself anymore.

But that same day, the guest on Super Soul Sunday started talking about God’s Love, and it really brought me back to my core beliefs… The Universe bringing me back to Itself, surely.

It reminded me that I am not being judged. That God–whether a He, She, It, The Universe, whatever that Source may be–does NOT hold anger or negativity toward me for my decisions, that those feelings come from my interpretation and not reality. It reminded me that I could NEVER be a disappointment, and the most important of all: That there is nothing but Love and Acceptance for me; Love and Acceptance for What Is; Love and Acceptance for what I decide…

As a recovering codependent, I had to realize The God Force I believe in is not like so many humans I have known, who bestow their version of love based upon how much what I do agrees with their opinion.

Probably the craziest part of it, was that in my darkest, anxiety-ridden moment, I felt like if I made the “wrong” decision then all my suffering would be my fault and I would deserve to be punished and abandoned, for not being in alignment with “God’s will.”

Oh, thank you, gene abnormality, for helping me bring all of this to the surface and release it. Those old brainwashed ways of thinking are NOT who I am!

I was so focused on What if I make the wrong decision? that I wasn’t able to stop panicking long enough to figure out from where my suffering was arising. And I was so absorbed in assuming my thoughts were a form of escapism–I must be running from my fear of going to a new doctor, I must be terrified of the new treatments not working, I must be running from the reality of another health problem…right?–that I completely neglected the idea that turned out to be the real problem:

I was actually running from the fear of not treating, and what would happen when I did that.

Treating felt too wrong to possibly be right. But choosing to forego it is something I’ve never done. I can see now, in hindsight, this discovery WAS the lesson in itself. It wasn’t a lesson in what to do. It was a lesson in how to Not do, something I’ve never known how to.. well, do.

I had no idea how much courage it takes to let go. To be continued…

a rainbow at night

 

What all could you do if you just changed your expectations of how to do it?

My art supplies have been in the largest cabinet of my six-foot-tall dresser since I moved into this house, and even in the old house, they were put away because I was too sick to do anything except extremely sporadic artwork. And I don’t believe in putting a bunch of “supposed to finish” projects out and about; I think it leads to stress. I didn’t need to stare at things that were impossible at the time, reminding me of what I couldn’t do because of the effects of being in treatment, and the limitations imposed by disease. I think the things you need to put in your immediate vision, around your workspace, are the things you’re actually going to work on.

And now it’s time to bring them out.

I am going to paint. I am going to convert my desk–which up until now has been used for normal desk activities–into a place for my art supplies. My white writing desk is going in the living room, and I’m bringing in my larger, flatter one to better serve my purposes. And a lamp. And a printer. But I digress…

Most won’t understand the significance of me, someone with OCD, converting their perfectly markless desk into an art station, where it will most certainly become covered in…everything.

Luna got me more watercolours.
Melissa got me more charcoal.
I just re-found my ink.

Things are not going to stay clean.

I can’t do art like I used to do. (Or perhaps I could, just once, but having my arms take two months to recover from such an unwise activity is just..dumb.) And you know what? That’s okay. Now I can do different things, perhaps better things. I’ve only recently begun to see the thrill of painting, and I can learn more. I just can no longer expect myself to sit down and complete a project all in one go, like I used to…

And it wasn’t bad that I did things like that. It was what I was capable of at the time. If I had a random hour of being able to sit up then I had to use it wisely and do whatever I could in that hour, because it could be months before I got that chance again. My usual daily limit of being upright was less than 30 minutes per day, which I usually needed to eat and bathe.

Long before that, I would draw for hours at a time, relax with music and my pencils and everything else faded away…

But some days I still may be able to paint for hours, like the day I made this poster for my niece, combining some ideas I saw online:

For my niece, so she will have something to remind her that someone thought she was amazing and wonderful.

Other days–probably most days–I can go back and forth between desk and bed, whether it’s a physical desk or my overbed desk, sitting up and painting for short stretches of time and lying back down while I wait for the paper to dry between layers. That works out, doesn’t it? And I’m okay with having to do that.

I’m not going to stop doing things just because I can’t do them the way I used to, or the way I want. The end result is still possible, I just have to achieve it in a different way.

 

What do you think you could still do if you just changed your expectations of how it “needed” to be done?

a rainbow at night

My Life IS My Advocacy: Pay Attention to How I Got This So You Can Avoid It.

by me
original zentangle-inspired art, by me

I was going to concoct a more drawn-out post explaining why I’m not participating in any of the awareness campaigns of May concerning my illnesses…but then I came upon the realization that I don’t owe anyone justification for my actions–or “wise inaction,” as it were–and I am comforted by the knowledge that many other people are feeling the same way.

For those who can advocate–and I do it at random, it definitely has its purpose, particularly in our government to let them know we’re still here–that is more than fine. If it gives you purpose, and belonging, and you feel pulled toward it, then do so.

For others like myself, I feel my entire life is an advocacy campaign. I don’t need a month, or a day: I get 365 days, 7 days a week, 24 hours a day, of this is what this disease does.

Pay attention to how I got this, and how hard it is for me to get my health back, so you can avoid it. Know that I was just like you, once. Know that I didn’t think it could’ve happened to me, either. That’s the biggest advocacy I can do.

Talking about Lyme disease or myalgic encephalomyelitis every second of every day for a month and nothing coming of it–because people who have their minds made up are NOT willing to hear anything else–is not going to help me OR anyone else, at all. I am not my disease. I am not Lyme disease, or mycoplasma, or myalgic encephalomyelitis, or autonomic neuropathy, or dystonia. They’re just things that have passed into my life to help shape and change it into something else. That’s all.

I’ve spent the past decade as an advocate, and I think I’ve done my part. In my absence there will be others. I personally think people learn more if you’re not yelling at them in desperation, but that might just be my personal experience. I’ve been blessed to help several people find out they had Lyme disease, for example, and it had nothing to do with advocacy. You can’t force the information on anyone: If they want to know, they will seek. And if they’re interested, I am here.

So instead of advocacy, myself and several, several others are focusing instead on what makes us feel normal.

Sure, our every waking moment may be imposed upon by symptoms and dysfunction, but that is not all we are. No matter how sick I’ve ever gotten, nor how sick I will ever be, there’s always more to me than an illness. This blog has been my health diary, yes, but I don’t want anyone to get the idea that this is all I am or all I do. I have friends and family and pets and hobbies and interests just like anyone else. And I am an artist. Not because the title makes me feel important, but because at my core, that’s how I express myself, it’s who I become when my physical limitations allow.

“Every job is a self-portrait of the person who did it. Autograph your work with excellence.”

So, there will be no post specifically about my conditions (although I did finish the “What is M.E.?” section a while back). It’s time to cultivate the parts of my life that inspire and enhance, that make me feel human and normal, not advertise what makes my life a living hell for the other 90% of the day, mostly to people who already know what I go through, anyway. And I’m so glad to know I’m not alone in this.

I’ll leave you with this link: 60 Ways To Make Life Simple Again

a rainbow at night

On Livers and Lyme and Dystonia…and Another Antibiotic Break

On Thursday, the 5th of April, I upped the minocycline to 200mg a day. For the next few days I only noticed a greater need for sleep. Since starting the minocycline in general, I had a greater need for lortab/vicodin (at least once a day) to deal with the head and neck pain (read as: severe), so that also got worse temporarily before tapering off into less-severe pain.

Mostly because of this, my sinuses were really bothering me (hydrocodone causes a release of histamine, and when you stop it, then you can get a rebound release of it), so I had to take Nasonex for several days–it helped so much, and by days Three and Four of being on it, I was outside taking pictures of flowers!! I figure it might have been helping subdue some of the herxing because of its immunosuppressive tendencies. After day Four I was able to stop that, too, since my sinuses had returned to normal.

Then on the 9th I got a fax from my doctor saying my liver enzymes were very elevated. This, after them being perfectly normal two weeks earlier, and me still taking milk thistle three times a day!! I was upset, but I had to stop all antibiotics again.

I don’t know if it was from not taking my antibiotics beginning that morning when I got the fax, or rebound inflammation from stopping the Nasonex, but I felt absolutely horrid starting that day, and did every day after/have every day since. We’re talking complete flu-feeling and just.. awful. It was the metaphorical equivalent of hitting a bear over the head once, and then standing there staring at it. Lyme is a very, very angry bear. To further my physical suffering, a few days later my Lyme flare up began! D:

And then an old Lyme-related friend came to visit me: Dystonia.

(I tried to kick it out–you must mean the house down the street; no Kit, here!–but, that didn’t work.)

And not just dystonia, but that special brand of dystonia with parkinsonism thrown in there that makes me unable to walk, that makes everything on my left side either fail and freeze, or flail and dance. (Why does Lyme like the left side so much? No one can figure it out, not even the doctors.) It began on the 14th, when I got out of bed, took two steps, and my left leg decided it wanted nothing to do with this “walking” business. Luckily, there are wheelchairs. I still had a lot of movement problems even wheeling about the house, but standing up makes it so much worse in general, even if I’m not trying to walk. It got worse on the 15th and 16th…

I wish I could adequately describe what this type of movement disorder is like. A dear friend of mine in Pennsylvania with Lyme disease has the exact same problems I do (also hypertonia, also brain lesions). A typical “episode” of this happening might start with me attempting to walk. A varying amount of time passes before I slow dramatically and then my left leg will start to drag. If I stand in one place it often curls inward. If I try to walk it is essentially frozen, or moves so little that I might end up walking on the tips of my toes to compensate. Something around my hip/thigh happens and my leg jerks upward, causing me to simultaneously fall forward, often twisting my neck to one side at the same time “for some reason.” I don’t always have to be walking for this to occur. I know low oxygen (or at least low oxygen ratio) makes this worse, because supplemental oxygen always helped in the past.

“A major principle of body movement is that all muscles have an opposing muscle. Movement is possible not just because one muscle becomes more active, but because the opposing muscle relaxes. …Rigidity comes about when, in response to signals from the brain, the delicate balance of opposing muscles is disturbed. The muscles remain constantly tensed and contracted so that the person aches or feels stiff or weak.”

Other times it involves my face and neck–like an episode of Bell’s Palsy that isn’t so much the nerves (I don’t think, at least) as it is the muscles contracting, and causing issues like facial grimacing, an inability to open my left eye all the way (lots of times I cannot look upwards, which is truly disturbing–I don’t think this is dystonia but I wanted to mention it anyway), and my tongue might tremor, etc.

This time, much to my dismay, my arms were involved, interferring with my typing. :( It wasn’t the M.E., and it wasn’t the neuropathy that’s started to invade my arms causing the weakness, but something different. (It’s probably impossible for me to put the difference into words, but I know what that feels like.) They were doing the same thing my legs did–gradually getting slower and slower and it was as if the nerves were failing to send adequate signals, where in my head I was sending them the action I wanted them to perform but everything was going very..very…..slow……… :| (But not the paralysis and takes-five-days-to-recover like the M.E. muscle failure; this is far more neurological.)

And then the 17th happened. Or rather, the night of the 16th, when I tried to sleep. I spent all night waking up every hour going “omg I’m going to vomit” and “omg why is everything moving” and then when I woke up once at 7am, the back of my head was killing me (figure of speech, of course). And thus began the cycle of the next five days. But at least after about the 18th, the dystonia and parkinsonism got better and I could walk again. Oh, the things I had happen every morning… One morning was like I described above; for another, it was all I could do just to roll onto my back and take medicine; for another there was gastrointestinal nerve problems that immobilized me in pain; then to add insult to injury, I woke up dehydrated, because I usually do during Lyme flares. It has been an incredibly difficult couple of weeks!

What got me through it was knowing that it would pass.

And it did.

The 22nd I felt good enough to take a ride to the city, with the help of adequate medication for pain and inflammation. Right now I’m waiting for a supplement to arrive (tomorrow), so I can resume antibiotics.

I can’t thank God enough for such an absolutely amazing doctor to get me through all of this. Especially after so many years of people who didn’t know what they were doing, no idea how to help me, or just passing me around from doctor to doctor. (From primary to cardiologoist to neurologist to immunologist to infectious disease specialist to another cardiologist to another neurologist to a movement disorder specialist to…) I feel safe in God’s hands and my LLMD’s experience to get me better. He called and told me this herb collection to order for my liver, called Liver Chi. He says he has patients with Lyme-induced MS who are on triple IV antibiotics, their liver enzymes inevitably going high, but who can’t stop treatment for fear of their disease progressing. He thinks I am in that group with the rate that my symptoms progress the moment I stop antibiotics. And if this supplement (a mix of chinese herbs) has been able to bring theirs back down to normal, on all of those antibiotics, I’m sure it can help me get back in treatment! So he said to take a two-week break (which I have), and.. essentially, don’t wait, get the herbs, and resume treatment whenever I got them. And of course keep checking my enzymes.


I’ve been indulging my creativity to help me cope, so here are a few pieces:

a rainbow at night


PostScript: Things I want to add into this post but have no idea how:
  • Ibuprofen always helps. Always.
  • My PCP says I should tell my cardiologist about the fact that I feel like I’m going to pass out when I take a deep breath–I actually had to lie on the examining table this time, which is new. My first guess is my usual lack of my heart rate variability and the fact that it’s supposed to vary when you inhale deeply, but mine often doesn’t… But that’s autonomic neuropathy for you.