Listening To Your Body: MS Medicine Changes

Comparisons:

MS, the invisible condition. When it progresses rapidly, it's hard to 'prove', people don't readily understand or may not believe that someone is suffering much more than it seems.

The results of my first yearly MRI comparisons are in. Whether it's bad news or good news depends on how you see things. I knew the results weren't going to be 'good'. I know I'm getting worse. Much worse. In only about two years the change is dramatic.

He starts with the MS version of  'good' news. My brain is what the neurologist considers stable. "Three new lesions" he says, "we consider more will appear. Three is within normal expectations." I know I've been losing more words, mispronouncing and slurring sometimes, but not extreme, and my mental faculties are still sharp, I had figured on the results. "Yes, the thoracic, though..."

Lets get to it. This is what I wanted to know. My legs are quickly losing function, and sensory ability has been whacked out beyond all recognition for more than 6 months. This is why, when he wanted to get MRIs of the brain and cervical spine I said no and requested the brain and thoracic instead. My hands, though numbish and weakening, are much more stable and able than my legs, I want to see the thoracic first. He agreed.

He looked at his screen and back at me, we have that rapport now, he finally 'gets' my understanding, so he reads it word-for-word from the radiologist report and I nod. I knew it, but hearing it is another thing. "Significantly more damage, so much he's not counting and he calls it an 'extremely impressive amount of progression', so... not good."

But it IS concrete confirmation of what I know. To me, that is good. I never believed I was in the Relapse-Remitting type of Multiple Sclerosis category. I tried the therapy approved for the course in good hopes, but to no avail. I'm most likely a progressive type for which the drugs on the market don't work. "The Copaxone isn't working for you." and he outlined an aggressive therapy with a couple of scary drugs I'd already discounted from my willingness to try.

His face tells me he knows where my brain was already going, he did his doctor bit and made sure I understood options. I agreed to go along with the blood test to see if I was compatible with the infusion therapy anyway, and told me, whatever my choice, I needed to be off of the Copaxone for 30 days if I wanted to start and was a candidate.

I'm not going to go over side effects. In reality, it boils down to this:

Am I willing to sacrifice the health of my brain, heart, liver and/or kidneys to save my legs? Am I willing to risk shortening my life to *maybe* climb mountains?

The answer is no. Hell no. Am I willing to research and seek alternative therapies? Yes. Am I willing to treat myself well and go as hard as I can for as long as I can? Yes.

Am I doing the right thing for me? Yes.

I quit Copaxone on Thursday, after 1 year and a month. I'm keeping track of the differences I feel being off of a daily injectable drug. Listening to myself.

After all, I am the only one who knows what is best for me. I have listened to the feedback my body has given me all of my life. It led me to a quick diagnosis of this awful condition. It will lead me through it.

The Naming of the Hug

The multiple sclerosis ‘hug’ is a tight feeling around the torso of some people living with the condition. I understand it to be caused by the spasms of intercostals, the muscles present in between the ribs. It is hard to describe, and harder to live with. I was afflicted by several symptoms of MS before the hug came, but it was the hug which alarmed me enough to seek a doctor.

It came on slowly. It wasn’t a constant sensation, this tight-band feeling just beneath my breasts and all the way around my torso. It felt like I was wearing a 34 bra on my 36 frame, uncomfortable, but not painful. It came and went, depending on my activity level.

I’m not sure of the exact date it came and stayed, but it has been constant for a year. It is easily the most insidious of my suite of MS symptoms. It changes the shape of my ribcage when it becomes very tight. On a good day, it is a 3-4 on a scale from 1-10. Most days are a 5-6, and when relapsing, 7-8. I don’t want to know what the worst of it feels like.

Last month, I realized it was about a full year old. I decided it wasn’t going to just go away. I gave it a birthday of May 1^st and told everyone I was going to name it since it was a real thing. Everyone knows I’m a namer-of-things, so this isn’t anything out of the ordinary.

This MS hug is now always present, but it is never seen. It is always in the background and always unpredictable, yet if it wasn’t for the hug coming to join my party, I might not have sought medical attention. I could have had my treatment delayed and been far worse off than I am now.

So to that, I have decided to name the constant hug around my chest Boobs Radley. While many people identify with Scout in the story ‘To Kill a Mockingbird’ I identify closer to Boo, and so does my hug ;) I’ll probably shorten the in-novel nickname to an even shorter nickname for my purposes.

If you can’t live with it or rip it out and burn it, you ought to give it a name and throw a party for it.

Jessie and Sam

Jessie and Sam:

Mere weeks before MS blew up in my lap, I’d spent an afternoon painting a landscape study outdoors by the side of a neighborhood road. A woman stopped and admired the work I had propped up beside me. We talked for only a few minutes, then in her thick German accent, she wanted to know if I could do a portrait for her from an old photo. For sure, I can, ma’am. We exchanged particulars, size, price, and then I told her I would be back at that same spot the next morning if she decided to commission a portrait.

She was waiting in the morning light when I got there. She had a black and white photo of a couple sitting on their farmhouse porch. They were her husband’s parents, now gone. Her son, their grandson, was moving into a house on the property and she wanted to gift the portrait to him at the housewarming party.

“Do you want it in color?”

“Oh? Can you do that?”

“Yes, ma’am.”… I asked what color his eyes were, and she described the shade of blue then described every other possible color in the photo. She was charming, and I commented how much I loved her accent, it reminded me of my teens in Bavaria. We were fast friends.

She paid me half then, as discussed, and then before she left, I asked “What were their names?”

Her eyes lit that I would ask, “Jessie and Sam”.

So I started like I do all of my oil paintings… sketching it in with warm sienna, a natural base for any outcome, just to get it situated in the canvas to my liking, sharpening the shadows and erasing with thinner when needed and laying white in where I know the highest areas are going to be.

sienna sketch

 Then I started adding some color and sharpening details

 The finished portrait

 

 Details

She loved the finished painting, and hung it in an unused room until the housewarming.  I saw her a few weeks later. She reported that her husband found the painting, and loved it so much that he wanted to keep it. It hangs in the formal living room. He said, "I'm keeping it, he can have it when I die"

Awww!

Killing Painkillers

Killing Painkillers:

Major Pain, reporting for duty.

MS comes with it. Neuropathy, muscle pain, spasms, tingles, burners, zingers, and aches, in varying strengths and lengths and in any area. I chose to battle the sudden onslaught with muscle relaxers and a narcotic pain reliever.

With my background of helping nursing students through anatomy and physiology, and my degree focusing on anthropologic sociology of health and wellness, I am not a good patient. I’m an aggravating, semi-demanding, know-it-all with only my survival needs mattering in the maze of the modern-medical complex. I came armed with knowledge and particular questions and an attitude. I’m not the average patient (no one is), and patronization pisses me off. “I’m not… You will… and I need” is my modus operandi … It is not pretty. I had to eyeroll him once when I showed him a trick with reading the MRIs …

Dr. “Oh wow, how did you do that!” …

Me: “First you do this then click here and roll your wheel…”

Dr: “Huh! I learned something new… I never knew about that”.

Me: *smirk* “I told you before; I do this for a living.”

When you get in the rhythm of neurologist visits, it’s every month until they get a diagnosis and get you on meds. After that, it is every six months…”Howdy, hey, how’re you doing, uh-huh, uh-huh, here’s six months of refills, see you later, bye”.

Well he can’t give a six month refill on a narcotic, so on our last visit in January, he gave me one more month Rx of the narcotic and six months of an anti-seizure drug commonly used to treat nerve pain. Supposed to be taken strictly, regularly, and without stopping unless talking to him first, this medication is well known to me. I have been warned, and I’ve seen it make people cuckoo-crazy.

I refuse to take it; I’m not in that much pain, right?! I split up the narcotic pain medication to make it last, and it helped dull everything and let me relax enough to sleep, yet it added to tiredness, and could jack-up the digestive system. Also, the wasteland epidemic of hard-addicted people it has left in its wake.  For certain it helped, I was more than grateful to have it, however MS is one big side effect, and adding new side effects to it doesn’t help me.

I’ve been building a life-long habit of NOT taking the medicines prescribed by my doctors, unless I feel I’m in desperate need. As I have said before, I’ve maintained a scant conventional medicine cabinet. I will, however, use near surgical precision with the medications I deem worthy of accepting. More often than not though, I’ve been heard to say: “Aw, naw… I ain’t taking THAT shit.”

I don’t function well without the muscle relaxers. The way MS affected me, damaged nerves lead to periods of spasms of confused muscles. Allowing them to chill out enables me to move more fluidly. The stumbles and falls are a direct result of those confused muscles (temporarily) unable to operate my personally learned balance.

I can only describe it as like being a toddler again, learning which muscles turn and balance. Reorientation is what I’m focused on trying to do. Now that I feel that have stopped the barreling train of damage my body was inflicting on itself, I’m going to try to start backing it up. I’m still not in remission, it’s still pretty bad, but I’m not getting “worse”.  The relaxers are enabling me to reconnect with the world and relearn balance, and I feel I have tweaked the amounts and scheduling to their most beneficial, and am near religious about Copaxone, and feel it is finally holding me steady.

I’m fairly proud to announce that I’m on zero pain medications. I haven’t even taken an aspirin in a couple of weeks. I do experience the pain, but I have begun to learn my limits. I just can not push myself as physically as I have been able to.

I told my sons I have been lucky to have lived this long with my particular super-human abilities, and now I’m like the rest of the mortals. Along with having already been in a better position than most to absorb the changes brought on by MS, I have learned to use natural means, stretching, semi-meditations, and good old rest to deal with pain when I experience it.

Furthermore, since taking the last of the narcotics, any side effects that came with them have vanished and I feel ten times better by that alone.

Maybe it’s because Spring is here, happy equinox everybody! That may have bearings on the up-tick. A combination of new resolve, sunshine, and plain old fashioned taking it. Sounds like a plan to me. I’ll let you know how it goes.

Chapter: MS and Sex

You may notice I'm working on a set of personal experience chapters laced with my knowledge of human anatomy and physiology. Here is a short one...

MS and Sex:

Where there's a will, there's a way.
OR
There's more than one way to peel a banana
 

Personalized Treatment of Multiple Sclerosis and Disease Pathology

Personalized Treatment of Multiple Sclerosis and Disease Pathology:

Multiple sclerosis is a highly individualized disease. Everyone who has it experiences and develops MS differently, no matter the common hallmark symptoms. More times than I’d like, I’ve heard, “Oh! You have MS like Montel” or Annette Funicello, or ‘Ozzy’s kid’ or ‘Sharon’s son’ or like my aunt, cousin’s friend… ad nauseum. I’ve learned to reply, “No, I have MS like Darla does. Montel (et al) has it like he (she, they) does (do).”

People diagnosed with MS are all treated with different combinations of a wide variety of medications, and I wasn’t about to start taking a basic approach to my MS. I wasn’t going to take my neurologist’s word for any drug, and I was going to ingest or inject my preferred substances on my terms.

During our first appointment, without waiting for tests and results (we both felt my condition was 99% certain) we decided to try prednisone, a cortico-steroid, to see if it could stop the inflammation of any affected nerves and knock the harshest symptoms down. Yay, yes, please. Set up the 1^st MRI and blood work.

By the way, aggressive steroid treatment sucks ass.

6 pills (all at once) first two days, 5 pills (all at once) next two days, 4 the next and so on till gone. Hot, cold, pissed, hungry, nauseated, blech, worst of all… It did nothing, NOTHING for the crazy tight corset hug, stumbling, numb, exhausted, stuttering wreck I’d become in 3 months.

First battery of tests came back positive for lesions on the thoracic and cervical spine and Lyme disease. The FUCK?!

Hazard of living in the swamp with ticks, Lyme disease and MS have many of the same symptoms, and Lyme is known to have false positives, and is a bog of idiosyncrasies of its own.

We treated that with 30 days of doxycycline, a heavy antibiotic which treatment, by the way, sucks ass. All symptoms stay wicked tight, numb and miserable and worsening.

He prescribed Flexeril, a muscle relaxing drug, to help the spasms of my intercostals (muscles between the ribs) which cause the MS hug, a result of the thoracic lesions. Percocet, a narcotic painkiller I was familiar and comfortable with, was prescribed to ease the pain associated with constant spasms. I felt like I’d done sit-ups for hours. My rib cage was changing shape, and my thighs were having the same type of spasms more often.

To be positive for MS, I needed a brain MRI to confirm lesions separate from the spinal cord. The brain scan was lit up. Ding, Ding, I have MS.

My neurologist wanted to me set up on disease modifying drugs (DMTDs or DMT) a.s.a.p. This class of drug is injected by syringe. There are several choices, all with a plethora of side effects, but with the same goal, to stop the progression of damage. I feel I should stop here to give a cursory explanation of the disease pathology of MS.

Multiple Sclerosis literally means multiple scars; the disease causes scar tissue exclusively to the central nervous system (CNS). The brain and spinal cord make up the central nervous system with a marvelous network of nerves which control and sense everything, EVERYTHING, we feel and do. These collections of nerves are known as white and grey matter. The nerves of the white matter are coated with a protective fatty sheath called myelin. It’s like the coating on an electrical cord, protecting the current running on the wires inside of it. This myelin gets destroyed during progression of the disease. And, like that electrical cord, it can get a bare spot and still work; it may spark and short out or slow and fizzle, you may not even notice. If it continues to receive damage, it can get cut completely and never work again. Enter the destroyer of myelin.

The human immune system is like a little army running around the body and destroying infectious bodies and agents. The CNS is enclosed from the rest of the body by the blood-brain-barrier (BBB). This BBB allows the exchange of essential nutrients and oxygen, but keeps everything else out, including certain drugs and antibodies. With MS, the cells of the body’s immune system breach the BBB and begin to attack the myelin during some trigger illness as diverse and mysterious as each body MS happens in. We know it is a combination of factors, but it remains difficult to decipher.

The injectable DMT drugs act as a protection to or, in some cases, as a mimic of, the myelin sheath from deterioration by the immune system. This (hopefully) slows, stops, and sometimes reverses damage. Similar to using electrical tape on the damaged electrical cord, it doesn’t ‘fix’ it, but it helps. Sometimes, though, it doesn’t help, the damage is done.

My neurologist wanted me to start on Avonex, a beta-drug injected into the muscle once a week. Often followed by a 24-48 hour flu-like hangover, this drug is also known to cause depression, and heart and liver disease.

No, thank you, that isn’t going to happen. Most of them are scary drugs administered once a week.  One drug, the copolymer amino acid glatiramer acetate Copaxone doesn’t carry those side effects, but you have to inject it every day, and many people have a needle aversion. I do not. However, it does come with one frightening side effect the others do not. Immediately after injection a, 15-20 minute reaction may occur. It comes with a pounding heartbeat, difficulty breathing, anxiety, chest pains, hives, the works. It goes away without further event or damage. Oh, and if you don’t rotate the injections the injection can cause irreversible sub-cutaneous tissue damage. Yet, it has been effective at slowing the progression. For moderate to severe MS like mine, the alternative to DMT is a quickened invalidation to death, like aging 5-10 times too fast or faster.

I did my homework. For one drug, the daily and possibly heart-pounding ride Copaxone, the benefits outweighed the risks. I rejected his prescription and told him I wanted Copaxone and we set it up.

It freaked me out a little, inside. My medicine cabinet before MS consisted of aspirin, children’s Tylenol, and band-aids, I kid you not. Now I was supposed to stick a needle of some crazy concoction somewhere on my body every damn day?!

I had one very paranoid and excruciating anxiety trip one afternoon, and got the freaks out of my system. To add to my resolve, I was getting worse in the interim of getting the meds set up.

My neurologist did not want to prescribe Percocet regularly because it was a narcotic and wanted me take Neurontin, an anti-seizure medication used to treat nerve pain. It came with two different sheets of warnings from two different agencies warning me of the same conditions: behavioral or mood changes, depression, thoughts of suicide, attempt at suicide… stop right there.  My mama always said, “You don’t have to tell ME twice”. And Dr. Neurosurgeon can stick that one.

Zanaflex is a class of stronger muscle relaxers indicated mostly for spinal cord injuries and multiple sclerosis and works well in combination with Flexeril to make the spasms a bit more bearable. The spasticity still affects me daily, but I’m learning to pace myself and predict effects of my efforts.

Treating myself better, sharpening up my diet and learning the ways I can exercise safely is essential, relaxation, napping, and indulgence of self rounds out the treatment I have developed so far.

The Answer

My 18 year old son lives at the old home place with my parents. They’re in their 60’s and he is the strong back of the house. His planned career choice(s) haven’t panned out yet. He, like many 18 year olds, is having a hard time finding a job. This is dejecting.  We talk about this often, and I’ve counseled him on the idea that the traditional job market may not be the way. I’ve warned him of the trap of paycheck grind, and ask him questions meant to make him delve. I tell him the labor-driven mistakes I feel I’ve made. I tell him every “I wanted to be” dream I had (have). 

Recently, I asked him “If having lots of money wasn’t THE variable of your labor, what would you be satisfied in spending your days and nights doing… not counting being a gigolo.”

 
He told me that he would love to sail tall ships… just be a mate and live aboard. I awwwed but it came out arrrrrr. That’s me boy.  

I’ve had serious changes lately, and had to ask myself the same thing. Hiking the entire Appalachian Trail at once isn’t going to happen this summer.  I dug past the layers of archaeologist, artist, teacher, beach bum, sailor/pirate, burlesque dancer, beer taster, deejay, and rock star, to the pure heart of my kernel. I wanted to be all of those because great writers made me want to since I learned to read at 4 years old. I would daydream a million stories of what I could be, what could happen… the eternal question “What if…” 

The answer to the question is to write stories, to record reality as I see it, to fantasize all day, and tell people “What if…” 

I’ve been forced by my own body to drop and rest and now I finally have time to sit and sift through years of writing I’ve done in secret and not-so-secret, then mix it up, light it up, and let it blow. 

I’ve always been a writer, I just haven’t pushed it. Now my inside pushes me in my seat and says “Do it!" 

All right, all right, me! … Damn!

Year 01 After MS

Year 01 A.M.S. – Update/Gut Check:

As far as I can gather, it has been one year since I started feeling (read sensing) the effects of Multiple Sclerosis. At the end of winter, February to March of 2012, I started noticing changes which came as red-flag moments.

One day in early spring I walked outside and I couldn’t see anything in the center of my field of vision from my right eye. I could “see”, but it was as if I’d looked at the sun too long with only one eye, or had a camera flash on only my right side. My depth perception was all wonky, also. Looking at the clothesline or the line of Ginger’s leash would make my head swim and beg my eyes to focus. For a few days, it happened every time I went outside, and I mentioned it to my family a couple of times, because it was weird. After a few weeks, it just cleared up. I forgot about it, mostly, unless it flared up after strenuous exercise or getting overheated.

Then…

“…man, I wonder why the bottom of my foot is numb”

“…huh, I wonder why I can’t walk a straight line across the back yard.”

“…damn, it’s crazy I can’t put my flip-flops on without almost falling over!” and…

“…Oh MY G…move! I have to pee, RIGHT NOW!

And once in the place to go ….now, why can’t I GO???”

Mental changes came last spring, also, but I didn’t recognize those as readily. Honestly, when I think back, the mind slides of multiple sclerosis may have come before my eyesight alerted me to the fact that something was wrong. For months, I’d noticed I would forget words that I was just getting ready to use as I started speaking. Replacing it with the first word that fit, and saying “but no, that’s not the word I’m thinking of, really, but you know…” always with the feeling that the word I wanted was just on the tip of my tongue.

I can taste them, those disappearing words that flit and land in my mind as I form a thought to speak. Then, when I start speaking, it lights away, like a butterfly or a bird you can still see but can no longer positively identify.

That was first, and easily the most aggravating, loss to MS, but it wasn’t the last. Other than some mild foot numbness and ultra-clumsiness, I started getting these lightning, itchy-tickling flitters across the right side of my belly at my waistline. After a few weeks of feeling these, the skin of my belly numbed. I’m a stomach-splayed sleeper, and it felt like I was lying on bunched up blankets, even though I was only on smooth sheets.

I’ve been teaching human anatomy and physiology for 6 years. I knew it was a nervous system issue, so I thought I may be developing shingles since I’d had chicken pox in my teens. I waited for a rash which never came.

By summer, I had no sense of skin sensation all the way around my mid torso and developed a tight-band feeling, like I was wearing a too-tight bra. It would come and go, whether I was wearing a bra or not. I couldn’t feel the exact placement of someone else’s hands on my torso if I didn’t see the touch.

My right hand began to go numb. Washing my hands, both hot and cold water felt different to my right hand compared to my left hand. It tingled and my fine-touch sense suffered.

I began to think I had a vertebral disk problem, maybe brought on by being a tall girl in a world made a bit too short. It seemed to be centered in the thoracic column, which wasn’t as common of an area of disk-slippage. But it didn’t explain my hand numbness, because that would be a cervical problem. I did some research and had a list of possible conditions, one of which was MS, but I didn’t even consider it was anything THAT severe, so I dismissed it instantly.

I was about to take a beach vacation with family, and just happened to have a retired orthopedic surgeon, and a physical therapist as companions, and waited for the beach week to see if they could “see” anything. At this point, I hadn’t drawn a connection between the vision problems and intermittent foot numbness to the more alarming corset-grip I was in.

Nor had I drawn a connection to a particularly strange and repetitive sensation I’d been having for months. When I drive, I keep my phone in my lap, so I don’t have to look for it if it rings while I’m driving. When I safely can, I glance down at it. A lighting flash of sensation, not quite pain, but alarming nonetheless, would shoot down my spine from the nape of my neck to the sacral plexus, and across my shoulders and through my hips. It is sharp and disappears just as quick. I now know it is L’hermittes Sign, common in people with cervical lesions of MS. I thought I’d pushed it too far in yoga, or stretched out my cord as an old headbanger in the 80s, and was now paying the price.

Nor the feeling of my thighs needing to stretch when I got up from sitting, you know when you’ve been down too long and you get up and stretch, and you get in it deep and your muscles lock up, like a good full body yawn? It’s like that but somewhat violently and even when I don’t want to stretch. It’s called spasticity, and it too is common with MS.

The beach vacation was very nice, but I was miserable, and everyone noticed I was definitely not myself. Beach heat and MS equals wretched fatigue. I would crash out at 8pm before adult game time/midnight swim hot tub partaking, and I shorted out on hours-long beach combing with the kids. We had a sand volleyball court in the back yard of the beach house, so my son and I began playing, and I fell hard several times stumbling while running and looking up. I blamed it on the sand and age, but everyone knew I was more able than that. It was a shocking display. This was not normal, this was not me. My resident vacation doctors were just as baffled, but they didn’t have all the information, because I hadn’t added the other ‘little’ things into the conversation.

I had already made an appointment to see my doctor the Monday after vacation. In the interim I finally clicked on the MS link on my list of possible causes. It was a veritable checklist for everything I’d been feeling, and it all clicked in at once. Oh, shit.

I started researching MS exclusively, because I knew. When I saw my Doctor, I didn’t say MS, I just described this odd list of symptoms, we agreed I needed a neurologist, and I did the same with him. I described and let him draw his own conclusions; we agreed I needed MRIs and blood screenings. Of course everything was positive. By September, it went on my history. Official: Multiple Sclerosis.

Now that I have researched my way around to my satisfaction, I think the lesions began forming in my brain first before forming down my spine. Lesions have been found on my brain, my cervical spinal cord and my thoracic spinal cord… every where we scanned.

They seem to have developed with devastating swiftness as I have, in one year, gone from a fit and active, multitasking woman to one who struggles through muscle spasms slowing every step to the kitchen for a cup of morning coffee, and needs a nap by the time the school bus leaves. I’ve gone from climbing mountains to using a cane to get around campus so I don’t fall down.

I can’t get all the way through a grocery store for a full shopping trip anymore.

On November 3, 2012, I began disease modifying treatment (DMT). I rejected the medication my neurologist preferred for the one I researched as best for me. By that time, I was having much difficulty walking, using stairs, and I was going down fast. I have no problem injecting my medication every day, because I know what the alternative is. It’s a wheelchair. I started DMT just in time.

I plan on writing about the particulars of treatment later.

I’ve been in treatment for four months, and I think I have finally leveled out and learned my limitations. The DMT does nothing to help the symptoms, it is to slow (hopefully stop) the advancement of my condition. My symptoms have never abated, and have yet to go into remission, but I am learning to carry on. 

Muscle relaxing medications help take the edge off function disability, and painkillers helped with learning to deal with the pain. You will notice ‘painkillers helped” is past tense. That, too I plan on writing about the particulars of later.

It’s a full-on, crazy ass trip. But it is not the whole journey.

I plan on writing about the particulars of the journey later.

Fish

testing 2

The Bomb

A bomb dropped on my lap
I saw it coming, I knew the signs
Nothing I could do to move away,
It came from inside my body.

Now I can't walk straight,
Now I can't talk straight,
Now I can't see straight,
Now I can't think straight,

My hands are numb; they won't function right
My back is afflicted; the muscles are tight
My brain is affected; I can't sleep at night
My pupils are dilated; it affects my sight

The blood-brain-barrier was breached
The immune system attacked its own body
Eating away at the myelin lining
Shutting down communication
Sensory deprivation
Motor discombobulation

No cure, no relief
Damage without reversal
You won't find my grief
To that I give refusal

It's a new normal
Stumbling, stuttering, exhausted
I truly forgot the word, your name, my place, his face,
And what I wanted to say

That's not the word I was thinking of, I say
My concentration falters, my thoughts seem to stray
People who know, tell me I will be okay.
Don't say that unless your nerves began to fray,
And you know what it's like at the end of the day.

I know I'm strong, as the night is long
You haven't heard the last from me, that's a certain guarantee
I carried this bomb inside of me, and you may, too.
I unknowingly lit the fuse, and then it blew

It blew me hither and yon, through dark tight tunnels and magnetic fields, to doctors who see my signs as dollar signs, to unbelieving family, friends who don't understand, to feeling like a stranger who still looks the same, but moves differently, but speaks haltingly, but laughs unthoughtfully, and thinks crookedly.

This little ditty I wrote in one fell swoop, it isn't lyrical, it isn't beautiful, but reality isn't anyway, so I don't care. I am changed, so the world is, too.

HomeCritters

Many places get little guys like this, and that is wonderful. Hummingbirds are truly awesome creatures.

Many places get little guys like this, though people sometimes never see fence lizards. I think it's because many people never pay attention. Did you know, over the span of about 70 years or so, scientists have seen the evolution of the hind limbs of the fence lizard which allows them to get away from the fire ants which have been predators of fence lizards? Cool, huh.

Many places have snakes like this black rat snake. Many people would have killed this harmless guy and asked questions later. This snake eats rodents and stuff, which many people would pay a man to get rid of, sometimes using poisons and dangerous traps. Silly people.

I hung out with this one for a while, I named him Curly.

 I mean, what else would you call him?

 I loved the way he smoothed out when he was done talking with me, I sent him on his way. I think I saw his daddy the other day.

 Many places have bullfrogs, but lots of people would rather eat their legs than listen to their fabulous bass notes in the night symphony. We have several. This is Bocephus.

 But not too many people get this behind their barn. I got up to walk Ginger one morning, and there was this thing in the mist.

 I hustled Ginger back into the house, grabbed my ever-handy camera and stalked around the edge of the barn and caught it by the pond... he's lived here the whole time, but this is the first shot I've had.

Good Times

Published on The Red Barn Dispatch first.

Bell Haiku

Dinner Bell by Darla Vaughan

Call me what you like
Don't call me late for supper
You can ring my bell

Reality is not a Double-Fronted Cookie

It has been driving me silly all week.

I watch TV for entertainment yes, but I also watch to get a glimpse of the man behind the curtain.You know, the one we aren't supposed to pay attention to.

This commercial is a fine example of the little things. It's all in the details no one ever notices except people whose job it is to separate you from your wages, and freaks like me who recognize these details.

Does no one else notice, after she bites the cookie and they flip the camera angle back and forth, the cookie is a 'front' or 'top' in both views?

All cookies have bottoms, yo. But not in never-never land.

I could bitch all day about the veneer that so many people buy into, but either you get what I'm saying, or you don't.

Not to mention... "Bitch ate my COOKIE!" the youtube site comments on this video have me smdh.

Ahh, the public. I'll just sit here and eat my homemade cookie and laugh and laugh.

An Inch of Rain, A Drop of Time

I heard on the local news that September '11 was the last time we've had an more than an inch of rain with one system, in this area.

Here in the swamp, we got 1.73 inches yesterday. A veritable deluge, comparatively.

It has been the same length of time since I blogged Barefoot. Much has happened since then, maybe not on the face of things, but inside of my cosmos (which is me, yours is you).

I take that back, on the face of things, too. I mean, I did, after all, quit my job a couple of weeks ago. Just up'n quit. No safety net, just my own talents. I mean, I have them (so do you), but I don't use them efficiently (neither do you, well you over in the corner, you do, but not all of you), because of trying to keep up the farce of 'employment'.

It was simply taking too much of my precious energy, without true reward. I was giving of myself, but not to myself. I see that now. I could complain about the reasons I gave my coordinator, all valid, true, but undeserving of rumination.

Instead, this little drop of time, this period of drought, has been washed cleaned and revitalized of this dry, odd, winter with a drenching of life-giving rain.

Seemed the right time to blog about the little dormant seed in my universe, which took advantage of a crack in its tough coat and decided to burst forth. I'll nurture it for all I'm worth, for it is all I have to feed myself.

protective seed coat

only holds the germ so long

it wills itself out

Liberty in Low Light

This past week I have been subjected to stories and images which have dug into scars, designed specifically to tear them open, to make them fresh, to make them worse.

These stories and images aren't designed to heal, rather they are designed to make their indelible mark on the psyche of anyone within their reach. A media storm endeavoring to keep the machine in motion by preying on empathy.

Call me heartless, call me a bad American, I don't care. Our liberties have been consistently trampled on for ten years, culminating in a decaversary which has made the news media slobber all over every one of us.

You may fall for it, you may fall in line to pay your respects to the traveling chunks of wreckage, buy the books, gobble up the coverage, and, quite possibly, you may have your identity as a global citizen drawn on a backdrop of two iconic buildings, photographed with the rising sun, creating a religiously enticing image. Add an eagle and a flag, and you have an industry of bumperstickers, memorial flags and yellow ribbons.

I can't take it anymore. I am sickened by it.

A beam from the World Trade Center and a chunk of stone from the Pentagon came touring to my area this week. Of course, the news was there. Also, there was a line of people there to view these bits of wreckage. When the news reported this, several images and words disgusted me beyond anything I have seen or heard lately.

One was a woman grasping the wrist of the very small child she was holding in her arms, and making that child touch and stroke the chunk of concrete as it were a holy relic. She was speaking to the child as she did it. I have no idea what she was saying, as it was just a backdrop to the reporter's story. The image, I suppose was included to pull at someone's sense of loss. After that was a man stroking and patting the steel beam pulled from the tower's wreckage. I had to shake my head at the utter meaninglessness of the actions.

As I was digesting these images, the story went to an interview of a woman and her child. This child, as the newsperson reported, is officially the youngest survivor of the attacks. He proudly declared that he is only "alive today because god has a special purpose for me".

My heart and stomach fell to my feet. I know an adult, most likely his mother, has told him this all of his life. But that did not stop the bilious feeling I had toward that child at that moment. How utterly selfish for anyone to believe such rubbish in the wake of nearly 3000 deaths that day, and the thousands of other lives which have been lost fighting over the attacks.

Did those people not have a purpose? I think the children, wives, husbands, parents, and friends of all those lost on that day, and every day since would disagree. Was the only purpose in these poor dead people's lives to make the rest of us feel lucky? Was the only purpose in their deaths to fuel the machine?

I don't know, right now I don't know much except I am sick from all of this. I am sick of the media leading us down these paths, telling us how we should feel, asking the victims families how they feel just to make a story. Just as sick as the day I walked through Lower Manhattan and was assailed by a man trying to sell me a "Ground Zero Guide" for two bucks. There was another man on the corner across the street doing the same. Sick, I tell you.

I'm sick of the machine that makes money off of this terrible day, while spending tax dollars feeding itself, and creating images to make Americans fall in line, to create patriotism, and to bring fresh tears to the cheeks of people who are absolutely tired of cryng.

I created a few images, last year, of my days in New York. You see, though I am D.C. born, though I have been raised nearly exclusively on Army bases around the world, though I now live in a deep Dismal Swamp, New York has been my city. I love New York. I have spun dizzily while looking up between those two iconic towers, I have walked the streets and absorbed the essence of the city. I feel the loss.

I don't need to be reminded in the name of Liberty. Please, have mercy.



'Liberty in Low Light' painting by Darla Vaughan



To Be At My Own Fingertips

I can't stress enough how forcing myself to go without internet, as well as actually not being able to have it even if I could at times... was an eye opening experience.

I lived as a child before the 'information age'. This didn't mean I was without a craving for information. Forever reading... at the library, through my mom and dad's library filled with encyclopedias and our National Geographic magazines, discarded school textbooks.

Then this thing... AOL a way to get on the world wide web. This... google... ask it anything. Look at this extraultralglobalicious information portal... hooked-up.

You know I was, and am, and so glad to have it back.
All these stupid little phones and tablets and such just doesn't cut it for my X-Gen sized mind.
To be able to be me, and to find me... wherever I want to find myself is so visceral, I have to have it.

Glad to be back,

I have so much to tell you...

a yellow rose watercolor/sketch. Not much time for artwork lately. It depends on how you look at it. I see the work I am doing on the new (old) house as a work all on it's own merit.

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Dismal Haiku

what the water knows

the water will never tell

You'd have to be there

a teeny ode for my sister, the Dismal

constantly in my blood, for we breathe with the same breath

We respire each other.

A paternal link, peat moss in my very DNA, water filtered through her cells sustains my own.

it is the closest, but it is not the end... She and me the two of us we... are part of the whole.

Gaian Collective

Treat us well as you should yourself.

Wherever you are.



A Selection of Scribbles

Propaganda

Poisonous American Discourse.
Propaganda, of course.
Run amok through brains of muck - mired in the bog of McSulci and WalMartapoptosis.
Black orchid of the hot-house variety
Bred intentionally
Forced into existence
Against the natural way of the world

Seeking

Education is not the act of being taught, it's the act of using the tools given to you by the learned to actively seek the truth for yourself.
Take what is told to you lightly, and run to the nearest forest of knowledge and blaze a path to the truth for yourself.
You will never forget the way, then... For you are the trailblazer of knowledge within your mind
 

Free Bird

Hark! The breathless feeling
of change.
A leap of faith
causing me to contort
in midair with
the suppleness of a cat
-- Natural Acrobat --
landing -- surefooted
no matter the takeoff
position, propulsion, or
situation
-- Even Steven --
I live to stay in
this flow no matter its
direction, intention, or
evolution
I make it change
course because I
have that power. I am
free... I can do what I want