Look at my self portrait. What is this philosophy of kindness? Perhaps it was how I was raised, or my late mother’s genes, but one thing I always try to do is see the good in others. I do my best to be kind and helpful when I am in the position to, even with folks I may only encounter once. I have met many wonderful people this way. Usually kindness is returned, even if only through a smile that tells everything. I think back on how even small kindnesses in my own life truly helped in the end, even when I didn’t always recognize them at the time. Sometimes this philosophy backfires, but that’s life.
As shown in my self-portrait from 2017, this approach often gets wildly misconstrued by folks who haven’t cared to know me well. Read the writing in the drawing and note the contradictions. People see what they want to see. Read the quote on the right from Ralph Waldo Emerson and know where I stand. A huge part of the “something” that I am involves my philosophy of kindness. A bit of the rest is covered in Forced Restart. My likeness above is distorted. That is a goal of most who criticize. It impresses me that these criticisms came through in the expression of my shape in this drawing.
My motive in being openly complimentary about things I’m truly excited about is an attempt at spreading some positive notions in a currently overtly negative world. I feel it bitterly necessary when so many people senselessly beat others down. Of course I don’t like everything, but I try to encourage and appreciate what is good. There IS actually good in the world.
If I do feel the need to criticize, I still try to be kind, or even clever. My mom’s philosophy strikes again. What good does it do to dwell on negatives? I am not perfect myself. Nobody is. I do not believe we are meant to be. Imperfection is often beautiful in and of itself. Seeing the world this way is a survival technique. Seeing “beauty” is crucial.
I am willing to overlook others’ imperfections and interact with people I see a spark in. By the same token, I defend solidly against manipulation by those who might be false or even aggressive. Manipulative kindness is not true kindness. This gal believes in truth.
Philosophy of Kindness
In life, you must *somehow* see good and beauty, or your spirit will die. The negativity you project will very likely come back to you in an even bigger dose. If you only see negatives your life will be negative. You must also know yourself to see the true beauty in others. That can be an excruciating process, but it is worth it in the end. That is life.
“Just” a Fan
As an art and music geek, I am curious. I love talking process, simply because it is so fascinating. If anything is spiritual for me, it’s music. As far as teachings go, the Golden Rule is imperative. In truth, everybody approaches things in their own way. Everybody must also find their own way. My favorite experiences as an artist have been the sharing experiences with many talented individuals who I admire.
I try to operate with humility. Do I believe I’m “all that”? No, nor do I want to be. I do what I do with my art, and if it resonates with someone, all the better. It’s another part of my philosophy. From that angle, I am truly an art fan and a music fan. I am much more likely to cheer on others’ work by word of mouth or social commentary than exclusively drawing attention to my own efforts.
My own efforts are self-driven to provide inner balance in the face of ugliness projected, spewed out, and grinned in by the world. Sometimes I add beauty through my own artistic process. This process lets me more readily concentrate on the good around me. It gives me focus rather than letting me become consumed by the misfortunes and ill influences I face.
Retrospective of 2018 from Melasdesign and a portrait battle for most desirable subject between Donald Trump and a teacup Yorkie.
Which do you prefer? Political satire in art concerning President Donald Trump (“My Trump Fantasy” aka “Resisting the Urge”), or the cuddly cuteness of Chewie the Yorkshire Terrier’s pet portrait?
Welcome to my summary of the end of 2018 – a year so screwed up I can hardly look at the rest. I’ll touch on earmarks of the dramatic year and spotlight a new piece of political satire (Donald Trump art) and a photorealistic Yorkie pet portrait. Both of these genres are becoming audience favorites for fans of me, artist Susan Hicks.
After honing my drawing, graphic design, social media, ad design, and handmade artisan (metal clay) skills heavily in 2017, continuing the trend regularly in 2018 didn’t quite go as I might’ve desired as an artist, or simply a normally functioning person. I was not alone.
A Year of Di-SAS-ter Political Satire in Art
First there was website hell. I had to phone my hosting service with just about every site update of my own, and each software update from their end. My initial build is *still* not complete. A shop is yet to come. Taking a break for some Trump political art was actually a satirical relief from *that* chore.
WordPress was shifting and changing in fast progression upping a new block based builder called Gutenberg. The trickle-down effect into the plug-ins that run the show was like an earthquake. Everything was constantly updating and often breaking. An artist needs time to create, and I was consumed with battling a technical monster. An artist who doesn’t create loses revenue and a little sanity.
Then there were the national tensions evident for every US resident, expanding from vicious social media and news in the aftermath of an election that was deplorable on *both* sides. The last “new acquaintance” in misery was myasthenic crisis, which nearly killed me.
Sadly, so many people in my close circle had fantastically bad years too, and the more I ask around, the more I find folks having the same bad luck. I feel for you all!!!!!!! – SO, what follows is a bit of a look at my Trump political art and pet portrait work, which is always what gets me through the bad times.
My Trump Fantasy – Political Satire in Art
Despite all the medical adventures (and misadventures) I suffered in 2018, despite all the people drama on the internet and closer, despite technology hating me with every circuit involved, and despite so many having an awful year, one thing overshadowed the 365 days; something of odd color (to even non-artistic types) and little content.
I donned my political satire artist cap and created the work below entitled “My Trump Fantasy.” Also known as “Resisting the Urge,” it’s up for sale on RedBubble and Society6. This political art is about our current President Donald Trump specifically, and is not accusatory of those who voted for him (unless they actually do find themselves embodying any of the not-so-charming characteristics scribbled in below). Voting is a right and a duty, and I congratulate anyone who takes the time. Just as voting is such, speaking out with art (even Donald Trump art) is also a right and a duty for those inclined. The rest should be fairly self-explanatory. At the very least, I do not feel he embodies my own philosophy.
As far as the cartoon goes, I’d had the idea since I created my well received design “Alternative Facts” (Society6 / RedBubble), but at that time (a year ago) it would have been too soon to begin its creation. The “Alternative Facts” design shows redacted text with “Make Америка Great Again,” showing “America” in Cyrillic.
This artwork is available in my RedBubble collection “Taking a Stand” on many fine merchandise items from posters to fashion. You may also purchase it in the other art-to-product Melasdesign shop on Society6.
I suspected what is now coming to the forefront in the news even before the election, but needed to wait for the predictable to actually happen and be reported. Now we read, and wait. This has been a crashing rollercoaster of an administration.
When the time came to draw “My Trump Fantasy,” (see it on S6 too) it was a nauseating experience. Even so, I felt it my duty to create this political satire art of Trump. The guy just isn’t very pretty! Yes, it really was necessary to use quite a bit of orange to get his face and hair looking anywhere near correct. That part had me giggling. It was a sort of giggle, gag, giggle, wretch experience.
Now a Cutie – Meet Chewie
But enough ugliness! Onto a much more pleasing subject, by my way of thinking. My other final project of the year was a photorealistic pet portrait drawing of Chewie, an adorable teacup Yorkshire Terrier. Using a photo on screen for visual reference, I declared the drawing done after about 22 hours drawing time. Wasn’t it a great model pic?
When my eyes work with me, and my hand control is normal, these are examples of my abilities.
The drawings in this post are achieved thanks to availability of an Android platform tablet computer with pressure sensitive stylus combined with the inexpensive and the wonderful drawing app ArtFlow, which gives me the ability to step backwards and “ignore” any wild mistakes in muscle control of from distorted vision.
The good news as of January 2, 2019 is that a good deal the folks close to me suffering their own dreadful years have already had (at least temporary) reprieves from their drama of the last year, and I heard several positive turnaround stories in dealing with folks out and about on January 1. So fingers crossed for us all.
A Myasthenia Gravis patient’s 20 year trek to get a correct MG diagnosis, including examples of misdiagnosis, descriptions of diagnostic tests, and personal recollections of dealing with the process.
Getting diagnosed with Myasthenia Gravis was a long, frustrating journey. My official diagnosis was brought down in 2009, but only after visits to a myriad of doctors and a lot of heartache. From neurologists, to endocrinologists, general practitioners, psychiatrists, counselors, and even a disastrous visit to the Cleveland Clinic, there were many trials and tribulations in my Myasthenia Gravis diagnosis story.
Now that I have a solid Myasthenia Gravis diagnosis, I recognize the symptoms easily. In hindsight, I believe I had been suffering MG since the late 90’s. That is presently about 20 years ago. My get up and go had just got up and went. I often had a puzzling symptom where I would suddenly lose my balance out of nowhere when standing still. I chalked it up to inner ear problems, and tried to make a point of being near something to lean on when standing. I knew to expect a pinball-esque trip navigating through crowds. Once an avid walker, I became more and more fatigued. Already then, although I had never been a fan of warm weather, dealing with Virginia Summers had begun to feel like death. I began to limit my time outdoors, much to the chagrin of friends and family.
My vision had gone to pot, as is shown by the painting below, which at the time seemed sharp to me. It was one of my more crisp images from the period and is even sharpened a bit in photographic editing here. Happily, this is a popular piece of mine.
Another example of myasthenic blur is represented by this photograph from September of this year, which I perceived as sharp at the time. The body and the brain have an interesting way of compensating. That’s all party of a typical MG diagnosis story.
Already in the 90’s, long before my Myasthenia Gravis diagnosis, driving had become a real problem due to visual anomaly. I managed getting around town, but anything at highway speeds was a game of strange, nerve wracking blurriness. I kept passing on the highway to a minimum. My peripheral vision was shot. It almost seemed like tunnel vision when in motion. I now know that it is probably a good thing I did ask for help with transportation. I was very lucky to have assistance.
Now, in 2018, I do not drive at all after several incidents of leg muscles not cooperating while behind the wheel. There was a startling, loud, but non-damaging collision that was viewed as intentional by the other driver, sitting innocently in her new car behind me. I was parallel parking, and hurtled into the parked car during the last reverse move. I meant to hit the brakes my leg didn’t move to the right position. My intended brake force became acceleration, and the resulting crunch echoed through the street. How humiliating to be outside the shop I was about to do business with for Melasdesign. No doubt stress and anxiety had weighed in here. The other driver was livid and only ceased attacking me verbally after an onlooker came from inside an establishment to defuse the situation. Additionally there were several close calls involving getting said leg to apply breaks in traffic. After that I hung up my hat.
Adding to the puzzlement in the search for correct Myasthenia Gravis diagnosis were the distracting health problems I already had. It seemed to make most doctors throw up their arms in disgust that I might suggest something more was up than what had already been diagnosed. I was sedated by psych meds for major depression and PTSD, which contributed to severe weight gain (and yes, they do increase appetite).
I suffer hypothyroidism. My endocrinologist finally found a happy balance of Synthroid at .3 mg after much experimentation. Later, a veteran hospital nurse saw the level and said it was the highest dosage of Synthroid he had ever seen. My Vitamin D values were low (a very important MG factor). Sadly, starting from day one my medical rap sheet is a yard long. A doctor recently expressed dismay upon reviewing the list during a check-up, saying I’ve “been through enough.”
In the new millennium, things got especially grim – an especially bitter chapter of my MG identification pre-story. I had to have emergency gall bladder surgery. I feel blessed that the anesthetic did not cause complications, as special measures are required for MG patients. Employment became physically very difficult, adding to hanging on by a thread mentally from the stress of continually pushing through illness, and being forever treated by doctors (along with other, closer people) like I was “just crazy,” seeking attention, or just plain lazy.
Regarding all of this: It’s never been a goal of mine to fake illness, and I am offended by people who say they are “jealous,” when I “get to stay home.” They take so much for granted. Even this blog is meant to be informative, more than a journal of “aches and pains.”
A Telling History
By the early-2000’s I could hardly move off the couch at home. I was still a long way from the Myasthenia Gravis diagnosis. At work, I used the break room couch intermittently for naps. My staggering depression became debilitating. I deal with the condition, a PTSD diagnosis, extreme anxiety (and variables thereof) to this day. I will not go into that here, other than to say I suffered early traumas and got caught in many other bad situations throughout the years. Through not recognizing abuse coupled with horrendously low self esteem and lacking knowledge of a person’s basic rights as an individual, I repeatedly wound up with manipulative, toxic people in my life.
This history and psych diagnosis is a monster to deal with and greatly limits my normal functioning in society. These stressors greatly effect myasthenic symptoms. Many patients with an MG diagnosis deal with depression. The link between childhood trauma and later Myasthenia Gravis is examined here. Through the combination of all of this, I broke down completely and had a decade of sheer mental and physical hell. The term “basket case” was once aptly used by a counselor.
Then there’s my mystery illness link to MG: I was sick for a year in my teens with what doctors at the Medical College of Virginia declared to be a “self limiting unidentified virus.” It was said to be similar to the Epstein-Barr virus, to which an MG linkage has been found. I will write more about that in a future blog entry.
There was a glimmer of hope when a hometown neurologist decided to send me to the Cleveland Clinic. I in no way expected a Myasthenia Gravis diagnosis, but I had hope something would finally be figured out. When I made that appointment I was at wits end. I had a gut feeling that neurology was the right direction. I was also having strange pain and odd sensations in my head (which were not MG related). At that neurology appointment I had trouble explaining more than the abstract notion of feeling terrible. I did not understand my symptoms enough to describe them.
During the examination I had a limp, which I had never noticed. The doctor picked up on it. This is still a very typical symptom of mine. I was and still am so used to living with symptoms that they do not always register consciously. This initial neurologist ordered an MRI. The only thing I remember specifically about the results was that it was said to show some hydro-encephalitis. I still don’t know what in the world that was about, and nothing has been said since. I was off to the big guns.
A Jerk with Credentials
During the Cleveland Clinic scheduling, I was asked if I would agree to seeing a doctor’s assistant. I thought and responded “only if I must.” I felt this would leave the decision open to the hospital, but express my preference. I was exhausted after all of the dead end streets and was trying to stack the cards in my favor. My dearly missed, late and long suffering mother flew with me to Cleveland.
Much memory of the visit is blocked, as is wont to happen with bad experiences. I just know that when I saw the doctor (who I suspect was not happy about me specifically wanting *him* that day) started off edgy, and then flew into an utter rage when I had a hard time naming specific symptoms. Fatigue and feeling awful were apparently not a big enough complaint for this clinic, although in hindsight the Myasthenia Gravis diagnosis definitely was. He yelled and cussed loudly, “why are you here if you can’t even name your symptoms??!?!?!?!?!?” I wish I had heard of patient advocacy at the time.
I was terrified. A doctor who has it in for you is not a good thing. I had been so anxious about the appointment that I had made a graphic of key points the referring neurologist had brought out. That was in case I didn’t have the courage to speak. It was daunting. I suppose that didn’t set well, or maybe this “top doctor,” like most others, only saw the face value of a depressed, fat woman with her mother and made up his mind. I will never know.
I quickly ran out of the room to the bathroom and broke down and sobbed in relative privacy. I guess my limp wasn’t exhibiting that day. Maybe nothing was. MG is not constant or consistent. It is ever-changing and in many ways unpredictable. It is unique in every patient and therefore nicknamed “The Snowflake Disease.” That’s another reason diagnosis can be so difficult. Afterwards at the Clinic, I saw other supporting doctors who, from their recommendations, also concluded that I was simply fat and “mental.”
Many people close to me were incredulous about my experience. I guess at that point I was so used to folks coming up with the wrong conclusion about me in general that I was somewhat numb and resigned to it. The hard thing is convincing yourself not to internalize these nay-sayers. It’s important not to lose yourself. That in and of itself is a special Hell.
The following years were a downwards spiral of continual doctors’ appointments. The Myasthenia Gravis diagnosis was still the holy grail. None helped my fatigue and underlying symptoms. As wonderful as exercise is, it is not always the best recommendation when symptomatic for MG. It was the number one doctor recommendation. I tried my best, Virginia Summer or not. I scraped and scraped by. When I did manage to get up, I spent most of my time at the computer, trying my hand at computer graphics – less physical than painting or my beloved textile design. It’s so important to have an activity to distract oneself with – some way to look “out” and “ahead.”
A Diagnosis, At Last
Somehow, by sheer providence, I met my husband online as the decade started to wane. In the process of moving to the DC area I had still employed my hometown psychiatrist who was also a neurologist. I’ve been through enough terrible medical experiences (on two continents) that changing doctors is daunting. Near one of my last appointments with him I told of often waking up seeing completely, widely separated double. I love my husband, but am not sure I want to see two of him. I mentioned this to my psychiatrist, and he said to go to a neurologist and get a scan.
I decided to make the move to find a doctor in Northern Virginia. After an MRI showed no brain tumors, or the like, I was tested by my new neurologist for a possible Myasthenia Gravis diagnosis. He proclaimed it “was a leap.” I had never heard of the disease, so it didn’t mean much to me. I thought it was probably just another mundane item for my medical rap sheet. The leap landed solidly. The blood test for MG was positive. I was nearing a diagnosis.
An EMG/Nerve Conduction Study was administered on the day my blood had been drawn. In this test, your extremities get shocked in quick procession to measure nerve fatiguability. See a video of the process below. I do not endorse Hattiesburg Clinic, who may be perfectly wonderful. I am using the video only to illustrate the test procedure.
The test wasn’t pleasant, but also not excruciating. It was just kind of an odd, fast, repetitive feeling that went on for about 40 minutes, by my husband’s assessment. I did my best to mentally zone out during the process. The blood test that followed that day was easier, but costly.
The next step got relinquished by my doctor to a neurologist at Georgetown University Hospital. He has locally been called “The Myasthenia Gravis God” by yet another neurologist I visited. Hmmmm. I can’t help but notice I’ve named 6 neurologists in this article alone. Getting the picture? My doctor had been on the fence as to whether to get me to do a single fiber test for additional verification. Thankfully, Dr. “MG God” was conservative and said the blood test would do. I was very relieved. The single fiber test sounds awful to me. Think of the above test, but with a metal fiber inserted directly into a muscle (from what I have read).
I finally had a correct Myasthenia Gravis diagnosis.
The Next Step
It was quickly decided that I should have my thymus out. At the time it was still a somewhat experimental notion that has gained ground in the past decade. The thymus is a gland in the chest that usually shrinks to a mere nothing after puberty. MG patients often have an enlarged, tumorous thymus. It is suggested that having it removed improves the patient’s chances of not progressing to worse symptoms. A thymectomy can even promise improvement of current symptoms, even into remission. I was once again lucky for having gone to Georgetown University Hospital for all of this, because there was currently a surgeon spearheading endoscopic thymectomy surgery, much less invasive than the other option of trans-sternal thymus removal. She helped pen this paper on the subject.
The operation went well, and I hear the scar looks great. I ended up staying one night for low lung capacity after the lung collapsing process for the procedure. I’ve never been one to bounce back quickly. Most people think I’ve had thyroid surgery, but the scar is actually a good deal lower and wider than would have been caused by such. I started on a regular regimen of Mestinon, and everyone was happy. So far the Myasthenia Gravis diagnosis was in the “very treatable” realm.
MG patients: If you want to have fun, keep track of how many people can actually say “Mestinon.” Have further verbal adventures with the generic “Pyridostigmine Bromide.” Hey – You have to get your giggles where you can.
Along the way I switched to “The MG God” for my regular check-ups. It’s a bit of a hike, but this doctor has never kept me waiting 2 hours after a silver covered platter got rolled in for him to sup on, while reception mumbled things along the lines of “he’s doing it again.” Nor has the current neurology staff ever left me waiting in a room, forgotten, after the doctor has long since left for the day. Ahhhhh yes. Fun times.
A Welcomed Hug
I did show improvement post-thymectomy, and my husband and I were able to have some grand adventures. I even got a huge hug from an artist idol, Isaiah Zagar, when we visited Philadelphia’s Magic Gardens – The Gardens are an affirming and inspiring location of respite for me to this day.
Zagar saw me with the very fresh scar and was impressed that I’d made the trip. It was like unexpectedly stumbling on a dream in the middle of Philly, when we happened upon the South Street location. We did not know it was a lot open for touring and wondered what gnome or wizard might live behind the gate. For me it was art therapy and an illustrating experience of how I strive to forge forward instead of crying in my soup. Years later I showed this master my portfolio, and he sent a very kind letter with a drawing and the encouraging words “Keep on keeping on.” That’s where things stood for about five years. But not all good things last.
Please subscribe, for my continued story. Read about my Myasthenia Crisis experience and how I’m dealing with the aftermath. It is what inspired me to start this blog.
It’s nice to meet someone who loves Halloween as much as yourself. It’s also great if they too have dreamed of creating a DIY, homemade Halloween yard display. Better still if they are a gifted creator. Fantastic if their talents work complimentarily to your own. This was the experience which ultimately led to “Hick or Treat” in Thomas, West Virginia – a magical Halloween featuring Terry Pratchett’s Wyrd Sisters.
Disclaimer: “Hick or Treat” refers to the last name of co-creator Susan Hicks. Nothing more. We promise.
I had been already been thinking about decorating for Halloween, but the plot thickened when I was approached by Thomas, West Virginia native Andria DiBacco. The concept was simple: Create a scene featuring the trio of witches known as The Wyrd Sisters as created by British writer Terry Pratchett, also known as Sir Terence David John Pratchett. His title surely indicates his stature in British literature.
He created this trio as a comedic fantasy partial coven, loosely representing the Maiden (the green Magrat Garlick), Mother (the bawdy Nanny Ogg), and Crone (stern Granny Weatherwax) female symbols and added overtones of Macbeth. His writing is stylistically similar to movie scripts of the beloved comedy troupe Monty Python. He’s not afraid to throw a punch and is wickedly funny.
When Andria approached me about making the scene, I believe she already had a pretty good idea of what she wanted to do. It would be something new in Tucker County. With a surplus of currently unused chicken wire (there were once chickens up the hill) and old PVC piping formerly used for same, she had a ballpark idea. Determining the figures’ poses and final stability was a dual task, and my husband lent multiple tools.
I was given the task to make the faces and hands. My as-of-late unused polymer clay supply was revived, and my assortment of acrylic paints opened. I had never sculpted a face before, and my portrait work was mainly limited to drawing cat and dogs. I was excited to tackle the Wyrd Sisters likenesses as a first portraiture attempt. See close-ups of my modeling and painting in the short video below. We had the initial vision of our DIY Halloween display.
Creative Minds Don’t Always Think Alike
That’s no biggie when dealing with creative work. Read “A Philosophy of Kindness” to be clear on my personal life philosophy.
In the case of Hick or Treat, this was a great thing. I feel the two of us compliment each other nicely with ability and style. Andria’s technique for creating the chickenwire armatures for the Wyrd Sisters figures was different than what I would have suggested, but it worked out wonderfully. The witches took impressive form. I am used to felting garments where no sewing is needed. Andria has the mind of a tailor. There was a lot of wire to clip and fasten, so we both pitched in.
We brainstormed on how to cover and clothe the figures, and a sort of landscaping cloth was chosen as the material of choice. We needed something that was lightweight and preferably waterproof. Thomas weather is very erratic and can waver to extremes. Imagine my surprise when the basic covering turned into full fledged dresses, plus divine hats for two of the witches in Andria’s hands. For Nanny Ogg, we used thrift store clothing. No need for a tailored look there. I made amulets of polymer clay. Andria had made suitably witchy potion bottles with hand lettered calligraphy to help set the scene. A DIY Halloween had been on her mind.
The thrift store did indeed come in handy, and I recommend shopping there for your DIY Halloween activities. Thank goodness for B-thrifty. Not only was there witchy clothing a plenty in September, but the perfect wig for the Maiden, and sundry Halloween decorations to scatter about and upcycle were also scored. Instead of buying black cloth for a black light banner, a black duvet cover was chosen at a high discount. Dollar Tree was also a preferred destination.
I found the perfect used buttons, lace trim, and long pins for fastening, plus the fabric for face and necks at Fabric Place Basement. The gracious owners were getting used to me squeaking in at the last minute for Halloween fixings, and never hesitated to quickly help me find what I needed. Next year I promise to get the hours straight. We tried to avoid store-bought main props, but the Spirit of Halloween was helpful for lighting, cobwebs, and a really cool cat. It’s also terribly fun to visit when getting in the Halloween mood. I just wish there were one in Tucker County, West Virginia.
While Andria was feverishly working outside, I respected my health (see blog topic Myasthenia Gravis) and worked indoors in the unseasonably warm September weather. I modeled the three faces and painted them to character. There was a bit of drama with cracking during curing, but it was mended in the end. Then was the issue of affixing the “masks” to the head armatures. The technique applied gave extra stability to the heads in addition to the sturdy PVC “skeletons,” and helped keep Nanny Ogg’s noggin from being battered off in the wind one night. She was kinked strongly at the neck, but that was reparable. I have become a true believer in E600 adhesive. The Wyrd Sisters witches were pummeled in the wind and rain, and as the picture above shows, even snow. Our girls survived through sturdy construction and deft ground attachment.
We had no idea what kind of weather to expect on Halloween night. The weather in Thomas, West Virginia this year has been extremely unpredictable.
While looking forward to making faces, I dreaded making the hands. A friend had the perfect how-to suggestion. I am not going to give away the secret method of sculpting, but you might have caught a glimpse of the WIP in the video above. We couldn’t believe we were hanging out on Saturday night making hands. I had to confess that I’ve often been very guilty of weekend “arting” vs. socializing. This was a happy mix of the two. Between that and goofing off with the wigs I bought, there was a lot of laughing.
Apropos hair, Wyrd Sister Granny Weatherwax’s strands were bought at Beauty Island in Alexandria, Virginia, where the cashier somewhat incredulously asked if I was going to try braiding. I didn’t quite have the nerve to state my purpose, and found the only gray hair in the shop. I brainstormed a bit, and found a satisfactory method to affix the locks. Andria then styled the long silver strands perfectly, which was quite a help to this traditionally shorter coiffured gal.
In prep for our DIY Halloween, the Monongahela National Forest offered its wood for the brooms, as procured by Andria, who had a specific location up trail in mind. The forest is a wonderful resource for hiking and adventure in Tucker County, West Virginia. While we stripped branches, our pups made themselves comfortable beds of the discarded leaves on a day that was finally temperate enough for me to enjoy the much missed outdoors.
Otherwise I worked inside on the Wyrd Sisters’ faces and hands, but there was also a spooky soundtrack to make, and I had my heart set on making my house haunted. I had my first experience with track mixing and combined many free Halloween sound files from FreeSoundEffect.com with some spoken Wyrd Sisters dialogue. My cauldron sound was said to be convincing. The dialogue I chose and additional groans, howls, and creepy sounds gave added effect. Have a listen to the churning bubbles and more in the wrap up video at post end.
Artists, Nurses, and Actresses who DIY
With the Wyrd Sisters cauldron and audio completed, it was time to haunt. I have only recently begun experimenting with video, and had only made animated shorts using still images thus far. Tongue-in-cheek video Dry Cleaner Horror is my favorite example thus far, using a Dream Series illustration and putting it into action. We needed something more for our ghosts in this DIY Halloween event.
Andria and I became actresses – not as Wyrd Sisters characters, but ghosts in the house that would peer out of the windows on Halloween night. I gave direction and shot a simple video on my phone. Then I edited the footage to the extreme for a blurry, ghostly effect. I was thinking of horror films from Fritz Lang’s classic Nosferatu to more recent visual effects of modern ghost chillers. I was creating my own lore for our DIY Halloween.
There was another helper too. A home healthcare assistant kindly obliged me for some shots of clawing hands. Through crafty editing, it turned out to be pretty spooky. She was nurse number two, with Andria first in line. My part was being a bit of a magical spook. Andria was the trapped soul peering out the window before striking a ghastly pose. As a final touch, I added a few of my own graphics of macabre and skulls, plus flashes of different colors to move the theme along.
After a lot of DIY work and much anticipation (including both televised and printed news pieces in Tucker Country, West Virginia, featuring Beth Spencer’s expert photography), it was Halloween at last. We made final adjustments, and there were still pumpkins to carve. I found out exactly why my mother advised me as a child *never* to use a baking pumpkin as a jack-o-lantern. It’s an exercise in futility. If you succeed at all (as Andria did), it will probably require supporting toothpicks for the parts threatening to fall out. Imagine carving a spaghetti squash – no solid meat.
While we were finishing up the whole DIY display on Halloween afternoon, a black cat came to visit. Definitely a sign that we were doing something right. I just wonder which witch’s familiar it was. Maybe it had come to check out Greebo, Wyrd Sister Nanny Ogg’s cat. In the end, my little black familiar (Elsa the dog) chased it away. She was also insistent upon staying with us for the festivities and even made some new dog friends. With little time to spare, Andria and I dashed inside to change and then “it was on.”
Family, Friends, and Townsfolk
As the sun started getting low in the sky in Thomas, and visitors started appearing. The littlest ones arrived first. Many were making their maiden trick-or-treat voyage. Baffled and wide eyed, they didn’t hesitate in the least about grabbing candy. A boy and girl who chose to run, not walk, the entire length of the long, hilly street, with their chaperone following behind in his truck tickled us to death. They were definitely going to burn off those candy calories in advance. Respect. I got a huge giggle from the brother and sister who debated whether their mom actually knew “us witches” when she told them to go down the road to get candy. The world changes so much, but kids are still kids. Thank goodness. For me it made all the DIY Halloween work well worth it.
There were characters of all sorts including a mummy, scarecrow, and my favorite howling werewolf ever. A policeman was on the scene, and as appropriate, a little witch. She looked delighted when I asked her to join our coven. ….. our literary coven, to be clear.
Andria got plenty of help at the cauldron when she began posing as Wyrd Sister Nanny Ogg, leaving the DIY figure to the side. She beckoned the children, asking to throw them in. In the end, they helped toss in frogs and snakes. Whew! I got the impression that some had watched a lot of cooking shows.
My biggest personal achievement resulted when I begged one visitor to watch my “cousins” in the window. They jumped in surprise when a “ghost” appeared. Maybe I do have a future in horror. Nobody noticed Andria taking the place of the Nanny Ogg figure and sitting like a statue. She knew just when to spring into action. Listen to choice crowd reactions in the video below.
“Is that a real person in there?????” / “Look! It’s a witch!!!” / “That’s my worst nightmare!!!!!!!!”
Not only did we have young first trick-or-treaters at our DIY Halloween extravaganza, but we also treated Thomas school’s Chinese teacher Mr. Duh to his first ever Halloween. China doesn’t celebrate the holiday, so I hope we gave him a proper introduction. Welcome to the US and good luck. Thank you for educating our children, and perhaps creating more curiosity about the world around them.
Hick or Treat – Halloween Night Footage – Thomas, West Virginia, 2018 Watch this short video, then get all the gory details at https://melasdesign.com/hick-or-treat-halloween-2018/So much fun! 🖤 An artful offering on Halloween. 🖤
Andria and I are grateful for the outpouring of appreciation and enthusiasm that we encountered from the first day on. We started the actual staging three weeks prior to Halloween and added elements up to the day of. Curious folks would drive by, or stop, admire, and turn around. It was amazing and encouraging to see huge smiles and many thumbs ups. I cannot speak for Andria, but that made it all worth it for me, even before the event. The gracious input and reactions received on Halloween night was extremely rewarding. It’s so rare to hear unbidden “thank you’s” for something purely creative.
Special thanks to Brian Hicks for his patience, support, transportation, and tools. Thank you to Beth Spencer for coming out and supporting our cause with beautiful photography. Dora Clemons, we couldn’t have wigged out properly without you. Thanks for lending a hand.
Thanks to our trick-or-treaters: To Jimmy Wilfong, his family, and pups – we might consider Pepsi next year (wink, wink); The Cooper girls, my first candy recipients; the Clavengers and Ponickvars who came out; the enthusiastic teachers of Davis-Thomas Elementary School; Shanna and Aldean Pennington, our expert policeman and polite jack-o-lantern extinguisher; and lastly, Tyler Elliot, Heather Carr, and Owen with their gaggle of nighttime visitors.
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On May 1 I had my first ambulance ride. I certainly believe in making it a *real* May Day. Fortunately, the fine crew of Fairfax County EMS did a wonderful job in keeping a terrifying situation calm and getting me to the hard working folks at INOVA Mount Vernon ER before I slipped all the way into the great beyond. My Myasthenia Gravis crisis story follows.
A Somewhat Rare Disease
I have Myasthenia Gravis, and it was catching up with me quickly. You see, I was lucky to respond to relatively minimal treatment for years, since being diagnosed in 2009. Well, minimal if you count having your thymus removed as “just a thing,” and obeying the P’s and Q’s of living with the disease.
I somehow find it amusing that needing to go to the bathroom might’ve saved my life. It was the reason I woke up. I was dismayed to find that I could just barely talk, couldn’t move, but very thankfully, had just enough strength to tap my sleeping husband on the back and mumble “Houston, we have a problem.” The myathenic crisis patient is helpless.
Help on the Way
The EMT arrived very quickly, oxygen and resuscitation equipment in tow, necessary devices for treatment of myasthenic crisis. The team navigated the course of loading me onto a stretcher and then down three flights of steps (sorry guys!) into the ambulance. I was asked how I deal with living like this, up so high. It had never been quite that bad before! Otherwise I’m a pretty determined (and possibly stubborn) cookie and hadn’t let difficulty with steps at varying degrees stop me. I was ushered out to the light of dawn and sped to the hospital. I was extremely grateful for the EMT’s help in rescuing me during myasthenic crisis.
My fretting husband followed along in his car, and we left our terrified pup at home. She’s unfortunately very accustomed to me being sick, but not to a hoard of dark-clad figures coming by when we should all be sleeping. As a matter of fact, she took the whole thing very personally and didn’t want anything to do with me for days after I got back home. I promised her I’d avoid further myasthenic crisis as best as I can. She has since forgiven the traumatic event. I have done my best to get on with life after that forced restart.
During MG crisis, patients can (and possibly often?) remain lucid. I heard everything that went on. Whether the eyes cooperate and provide decent vision depends on the incident and the person. I might’ve seen a total blur, or double vision to varying extents. My eyelids might’ve refused to open at all. This time I could keep my eyes open for decent periods of time and keep up with everything. I cannot imagine how much more terrifying I would’ve been without vision.
A Crucial Question
I figured the best thing was to stay calm, because nothing will lead down the wrong course as quickly as being written off as a panic attack. I had been in the ER before in more minor stages of myasthenic crisis and knew the drill. MG symptoms also worsen with stress, and being misunderstood is always stressful for me.
I took this golden opportunity to ask my EMT caregiver whether the fire department does drills at a certain time on Summer nights. Even though I doubted it, my husband and I noticed recurring sirens at 9 pm each night for a while. I like to take advantage of the opportunities that present themselves, and have a long tradition of asking the question never asked before. This earned a recorded comment during stats notation that I was “very amusing.” If I’m gonna go, I might as well keep my sense of humor. Sometimes it’s the only thing you have to hold on to.
At the ER my neurological strength was barely 2/5. This is what myasthenic crisis is all about. 2/5 means you can only twitch a little. My breathing was very weak. My heartbeat was slow. I felt like I was sinking – as if I would disappear into my gurney. Not quite as dramatically as the scene below and definitately not involving Freddie Kruger, but still.
I still had to pee! When it came time to take my MG medicine from home (Mestinon / Pyridostimine Bromide), when asked, we said “it helps with nerve / muscle communication.” My poetic and philosophical nurse didn’t miss a beat, exclaiming “THAT sounds like a very good thing!” His recitation of verse by Greg Allman was extremely comforting. In the ER, you do what you do to get through.
How I became a Gourmet Vampire
The ER was put in touch with my neurologist and I was started on a drip of IVIG – an infusion of concentrated human antibodies. I had started IVIG a month before, making me a sort of gourmet vampire. I only take choice parts of the blood.
In the course of my visit, I stated I’m on good terms with the greater power (I am spiritual, but admittedly not the biggest fan of organized religion). If I hadn’t yet queued in as to my condition, this was a bit of an eye opener (no pun intended – I still couldn’t do much visually). I was aware of someone coding in another bay, and thanked my blessings to still be alive, while also thinking privately “here we go again.” I’ve had my share of health drama. At some point during the morning I was transferred to my own doctor’s hospital to continue the IVIG treatment, and was admitted for 5 days – one more day of treatment and then time for improvement.
My Own Daytime Hospital Drama
It took until the second hospital staff shift during my stay to convince all workers that I truly could not walk, while my husband was finally getting some rest at home. MG is an invisible disease. Eventually a special chair was procured to save my caregivers trouble getting me across the few feet to the bathroom, and to save me stress. Note to MG sufferer’s families: Immediately ask for the Sara Seat. I was on choke risk status for 48 hours, but didn’t have any appetite either way.
I saw a neurologist once a day for about 5 minutes (occasionally more if colleagues were present to halt his exit). Otherwise I saw nursing and tech staff. In general, there was simply not much information provided. The future was a big blank of “well, this is the usual treatment regimen, and most people improve” type talk, but no certainties were given whatsoever. It seemed only to be important to this young doctor that I was alive. It was daunting to think that alive could possibly continue in this helpless manner, when I had gotten by thus far with no major crisis. I guess it was finally time to gather my own first-hand information for this Myasthenia Gravis crisis story. I hadn’t planned on writing one.
There were blood tests to see if any unidentified illnesses had led to myasthenic crisis. There were none. Questions about my stress level were top on the list, and I know my dear husband was probably suspect. If I tried to address the stress of the hospital and dealing during the past month with scraping by after an initial, non-EMT involving crisis on Easter, my statements were shrugged off. Having no information is extremely stressful to me. Face planting on a bed, because a non-MD staff member doesn’t seem to know your condition is also stressful.
Through all this and double room drama, there were really more good staffers than the few star bad examples forever burnt into my memory. They seemed to have a similar life philosophy, for which I was thankful. Within 5 days I got to where I could stand up to use a walker with extreme difficulty. I could take inch-long steps then. I was being routed into in-patient physical therapy, but was emotionally kaput, stressed out, and missing my dog. I traditionally do not do well at all in hospital settings, and not in the “everybody hates the hospital” kind of way. I also now know that the CellCept I had been taking for a month was fueling high anxiety on top of an already well established fear of hospital admission.
Finally, with a bit of finagling, I got the go ahead from my own neurologist to go home. Getting up 3 flights of steps took over an hour, but like I said above, I’m stubborn! Why not pretend you’re the troll asking payment before neighbors could pass by my chair on the mid-levels? It definitely broke the tension.
That was the most terribly spectacular day of my history with MG. The other most spectacular day was in late July, when I took my first purely recreational walk since May 1 in an air conditioned mall. MG and heat do not mix. On the vernal equinox (that’s September 22) I took my first recreational walk outdoors in cool mountain breeze.
There were other scares too and so much to learn about the condition. Even getting diagnosed was a long, awful process with many misunderstandings. Most people have never heard of the disease and many doctors are very hesitant to deal with you for other maladies once they see your MG diagnosis. It’s complicated. Sadly that’s a part of every MG crisis story.
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