The Return To Innocence

Sooo, you know how I've been chatting with my neurologist a ton, and also with my psychologist? Neither woman has spoken to the other. But they both recently gave me the same diagnosis.
(Now, I need to stress that I am perfectly aware of the "Stop relying on so many diagnosis labels, it's just medical stuff, what does it matter, why do you care, why do you think people would care" cliche that has been poked at me by, well, many healthsplainers and people who just want me to stop talking so much about my medical history, future, and present. And yeah, I get that. But guess what, I don't care.)
The neurologist was kind of relaxed about it at first, and after I left her office I didn't really consider it. Not until that one session with the psychologist, when she looked at me with tears in her eyes.
It's just that the neurologist used one term, and the psychologist used a different term.
And I would love words from those who are there. Because fuck it, it does matter.
http://www.psyweb.com/articles/depression/chronic-stress-disorder

"...Williams died by the claw of the ghastly inner monster that severe depression lodges in the human spirit, losing a long fight with the unholy ghost." -Brain Pickings (included is a link to a book referencing clinical depression to a holy ghost)

In my last session with my therapist, I kept calling depression The Hollow and a Dark Ghost and The Nothing and, naturally, true pure abyss. In such violent howling emptiness, there could be sound and fury, signifying nothing. And sometimes there is just nothing. Fury would be an emotion, after all.
(And I know why depressed people don't tell the tale, lest they be called an idiot. They'll be mocked today. And tomorrow. Tomorrow and tomorrow and tomorrow. And they are heard no more, and as they are poor players, life is but a walking shadow. Out, brief candle. -And people wonder why we get angry when mental illness gets blamed for so many blameless things and things where mental illness is completely not ever the blame. This is why we can't have nice things.)

People always ask me why I cry when I say I am hollow, empty, ghostly, feeling nothing. Isn't crying an emotion? they say Doesn't it mean you feel something? they say. I think Allie Brosh, who wrote the greatest description of depression I have ever read in her blog Hyperbole and a Half, said it best: It is just something that is happening.
Because I don't feel like crying. I'm crying because my body is having a reaction. A symptom, if you will. Something needs to release. Some sort of physiological reaction must occur, lest I literally fade into ghosts.

I understand some of the reasons Robin did what he did. I don't know why he did what he did. No one knows why. No one can know why, because no one is Robin.
People have the same thoughts and feelings and illnesses as Robin had, and they see everything he saw. But none of them and nobody will ever fully purely viscerally know, truly know why he, Robin Williams, the funniest man of a thousand laughs, physically participated in his own death. Only Robin Williams knows.

Cool story, bro:
Someone who survied her own suicide attempt once told me that for her, there was only pain, agony, chaos, and the kind of despair that consumes utterly. Beneath it was a nearly robotic thought process. Any emotional thoughts came from a distance. As she began the process, she became enveloped in a still emotionless sedating transcendent serenity, and time slowed down, and she literally had no more thoughts. Since she was stopped by other people, she couldn't tell me much more. But she told me that during recovery, she experienced every single one of those sensations at once, from the pain and chaos to the calm transcendence. It took a lot of sedatives and intense biofeedback to help her out of that state and she was put on suicide watch again for a few days. They allowed her family to bring in her kitten, which helped so much that she now advocates for cat therapy when treating mental illness. I think of her when I talk to attempt survivors. I only remember her first name and some day I will forget some of her story. But she lives a different life. Not better nor worse, just different. She has learned lessons. She doesn't regret things. She still battles symptoms and switched to a new drug regimen and still does biofeedback. She hasn't had any suicidal ideations in over a year. She also treats her cat like the most important sentient being in the universe, since he helped save her life. Cats are awesome.

http://friendly-crips.livejournal.com/204952.html
So, the comment threads have turned awesome and have been a ton of fun. We're still rolling. Starting with critiquing Temple Grandin's societal status as "that famous autistic" and moving to needing autistic representation to cerebral palsy comorbidity to mental illness and neurodivergence, this is one of the most fascinating off-topic threads I've participated in.

Seizure happened in the kitchen. Jupiter meowed and rubbed against me while I crouched. Adam came in and gently lay me on the floor. My eyes were open and blank. Adam touched my face and reached for my mind, and I spasmed and gasped and blinked. I asked why I was on the floor. Adam helped me up and stood me against the large freezer. My memory is swirling. Alicia is holding me. Earlier, Adam said he told his boss, a fellow animal lover, that he needed an extra day to care for his wife. I rolled my eyes and said that was not necessary; that I was fine. Never mind. It was so dark and so white equally braided as order and chaos magics. I was spinning at ninety-nine percent light speed and thirty-five miles an hour. The world was elsewhere. A few seconds lasted a thousand years. Adam suggested I go upstairs and rest. Jupiter is suggesting a cuddle. I am thinking coffee and clonazepam and baclofen. I am made of light and love and pure order-chaos magic in its simplest form. I can give myself the right strength. May be that I can regenerate. As brightly and intensely as a Time Lord. I always shine enough for everyone.

BTW, I'm officially on MediCare Part B (retroactive as of November) and earlier my Part C Aetna Medicare ID Card arrived, which won't be active until January 2014. It is all good. It will still save over a hundred dollars a month between all insurance and drug coverage. All my doctors are covered, all my drugs will be cheaper, and I have carefully read, re-read, and examined all the paperwork with a magnifying glass (no, really). So December's SSDI check will be less two months' insurance payments, and then January's check will also be less the Part C payment, but it is all good, because it is still cheaper than what I am paying under MHIP Carefirst in general. I feel... well, I don't know if "lucky" is the best word. But it is not as bad as it could have been. I mean, I also ride Metro and local bus transit for free thanks to being disabled and a member of Metro Access paratransit system.

Some fully able-bodied people like to scold me for feeling grateful that I am disabled enough to qualify. It's not about that 'grateful' feeling or that whole "skip to the front of the line" thing. It's not about any of that. It's... I dunno. It's about taking whatever disordered damage you have and turning it into a personal individual advantage that works in your favor. It's about accepting and embracing the awful pained cracked parts of life and seeing that they have been opening all these shiny doors, after slamming closed other doors so furiously that the whole building shakes and walls crumble. You may never be able to walk through those slammed locked bolted doors that most able-bodied people get to glide through easily, but you have all these other doors opening just for you, ready to lead you to places where you, personally, will feel more comfortable, accepted, embraced, and understood on a level secure with your disordered damage. It's not your fault, and the places these doors lead you are fully aware and have already set up a spot for you. You are always safe in those spaces in between.

Like... having mild disabilities. For example: Having mild cerebral palsy is like being in interstitial places constantly - interstice being a small space that lies between things; a space that intervenes between things. Neither completely here nor there. A space in between. A crack in the continuity. Mild autism in that nobody believes me until they spend a few word-filled hours trying to decipher my brain languages. Mild ADD and mild OCD and mild/moderate but fierce migraines and headaches and mild/moderate but fierce epileptic complex partial seizures and mild/moderate but fierce chronic pains and mild inflammations and and this and that. Mild mild mild. Haunting and interstitial. Never bad enough to cause me to be rushed to a hospital, never simple enough to merely pass by with a handwave. I am those spaces in between, as are many, many, many people with certain neurologies. We are in those cracks. Oh, they say, it's all right, they're not too bad, they could be worse, they say. And then what?

Any fellow disabled folk and people who understand want to chime in? Am I making enough sense here? I feel like I am.

This has been running around my head for a few weeks and I've been wanting to get it just right, so other people with disabilities and chronic illnesses can know that they're not alone and that if they're afraid, we can be afraid together.


To quote a friend:

"I’m not very functional. If you see me out and about, I’m either doing well, or I’m going to pay dearly for it later. Probably both."

What this means is that on the surface I might appear perfectly fine and normal in every aspect almost all the time. What this means is that as time goes on, I'm going to be worn down, exhausted, and unable to properly, correctly finish all the things I was doing well.

What this means is that if I have been able to recite entire poems, paragraphs, television dialogue, and instruction lists, I will be unable to do so when I go into a fog. I have been accused several times of lying about my memory disintegration, because if I can remember specific things constantly it must mean I have a perfect memory for everything. Here is the thing about the human brain and memory: Memory is insane. It is fickle. It lies all the time. It writes fanfiction of your life. Just because you can quote everything said by a character in a television show does not mean you have a good memory. It just means that when your brain is in a good place, you can quote everything said by a character in a television show - although these days I cheat by looking it up on Google because I actually can't recall everything. It just looks like I can. That's the trick. I seem so normal.
The point is, when someone is diagnosed with brain disorders such as memory disintegration, it means that it is happening now. Everything is happening now, has been happening for years, and will happen until death.

I have been accused several times of lying about my level of physical disability, because if I can walk and run without a cane for a few hours it must mean I don't actually need the cane or any sort of assistance. I have been accused several times of deliberately wanting my symptoms to get worse, of living inside my disorders so that I don't have to face reality, which aggravates and irritates me, since it is the exact opposite of what I actually do - reality is happening no matter what I believe, and my reality is that I am permanently disabled and I am not getting better. The thing about cerebral palsy is that patients as young as twenty-five will begin to feel physically aged due to wear and tear on their muscles, joints, bones, and nerves. This is called Post Impairment Syndrome.To quote: Post impairment syndrome is a combination of symptoms that affect adults with cerebral palsy. According to the National Institute of Neurological Disorders and Stroke, this combination includes fatigue, pain, arthritis and weakness that is often a part of daily life. This symptom is due to the muscle abnormalities and bony changes that happen as you age with cerebral palsy. You can use three to five times more energy each day than an able-bodied person just to complete your daily living activities. This extra expenditure of energy combined with the spasticity and extra wear on the joints is a hallmark symptom of adults who suffer from cerebral palsy.

What this means is that when I say that I feel sixty at age thirty, I really mean it. I am not exaggerating or subconsciously causing it. What this means is that no amount of positive magical thinking and no amount of disbelieving my conditions will make me better; I might feel better for a while after psychically insisting that I don't hurt too badly, but eventually that will stop working and the symptoms will strike even harder, especially if I have been highly active from my positive magical thinking and my belief that I was not in pain. What this means is that I can decide my symptoms are gone and my bodily systems will just laugh; for someone like me, there is no power to make myself not have symptoms. What this means is that my problems are not temporary inconveniences that I can massage, medicate, meditate, and wish away... when I explain that I feel decades older, I really mean it, and I cannot slowly heal myself just by forcing myself to feel better.

Having a permanent physical disability means that I cannot just recover easily. Having a chronic pain disorder means that I cannot just force pain to disappear. What this means is that no matter what, I will be living alongside my medical issues.What this means is that I am never the same from one minute to the next.

What this means is that I really need to quit talking about my health conditions with people who don't want to know. I make too many assumptions when acquaintances and random people ask about my conditions. I have to remind myself that they don't want to hear about it. I have to remind myself that people will start thinking that I do want to live inside my medical conditions if I talk about them in so much detail. I have to remind myself to simply say things like, "I am reasonable" and "I'm disabled with cerebral palsy" and to expand only if asked. When I get scolded, snapped at, accused, and told that nobody wants to know about my medical issues, I often don't understand what is really happening. I need to remind myself that social interaction means holding back. And this is why most social interaction makes me want to curl up and hug a book, because books don't scold me for trying to talk about myself. Also, cats. Cats just want me to pet them.

****
Long quote, which I am quoting because many people I have met over the past few months literally do not believe that my health is declining on its own, and they literally believe that I could just make myself feel better with magical thinking, ie positive thinking, law of attraction. This is also why I've joined support groups. Being told "You're making your disability worse on your own" is starting to chip away at my optimism. I'm making this public so those new acquaintances can read and come to their own conclusions.

All Americans are living longer than people did years ago, and people who have cerebral palsy (CP) are no exception. For people with disabilities, however, living to an old age is a new phenomenon. We are just now learning what it means to grow older with a disability.

Although much of the information we are gathering on the topic is discouraging, there are strategies to make aging with a disability a more successful experience. “I have seen many advances in diagnoses and treatments since I was young,” said Bonnie Witt, an adult who has cerebral palsy. “People with disabilities are living longer, more productive lives. Doctors who treat adults with disabilities are navigating uncharted territory. This is a fairly new area of medicine, so—in a small way—we are pioneers.”

Symptoms of Aging Appear Earlier

People without disabilities reach the peak of their physical function between ages 18 and 25. After that, their abilities decline about 1 percent per year. At age 70, therefore, people without disabilities are likely to have about 50 percent of their top lung function, 50 percent of their peak kidney function and so on.

Even before their abilities begin to decline, however, people who have disabilities typically don’t reach the same highest points of physical function that people without disabilities do. And when the decline begins, it might be steeper in people who have disabilities. Author and Professor Bryan Kemp reported that people with disabilities show a decline of 1.5 to 5 percent per year after reaching their highest level of physical function.

In addition, people with disabilities experience aging-related changes years earlier than their non-disabled peers do. Although study results vary, aging-related changes generally occur 20 to 30 years after the onset of a disability. For people who have CP, such changes can occur in the 20s, 30s or 40s.

Pain Is Common

Pain is the most common initial problem for adults with CP. Studies show that most of the older adults who have CP report daily pain. One-third report constant pain.

The hip, knee, back and neck are the most common sites of pain. Medication is the most common treatment for pain. Studies show that 92 percent of people with CP report that exercise helps their pain symptoms, but only 49 percent report that they exercise even infrequently. People with disabilities use other methods of pain treatment, such as biofeedback or counseling, less frequently than people who don’t have disabilities do.

People with CP who walk have the most problems with pain, because their gait and movement patterns cause abnormal wear and tear on their bodies. That leads to arthritis. Twenty-five percent of people with CP who walk as children lose that ability as teens or adults. Others stop ambulating in their 40s because of pain. For all people with CP who continue to walk, distance is compromised—in other words, they can’t walk as far as they used to.

Additional Issues

People who are in pain typically experience more fatigue than other people do, so they tend to do less and rest more. When people are less active, they lose strength and endurance. Less strength means less ability to perform necessary or enjoyable activities, and it results in a decreased ability to care for oneself. That, in turn, can lead to depression, a need to ask more from family members or a need to hire more assistance. The effect on relationships and the corresponding financial consequences are obvious.

Falls are very common in adults with CP. Reports show that 40 percent of adults with CP fall at least once each month, and 75 percent fall every two months. In fact, falling is so common that most people do not even think of reporting the falls to their doctors.

Because the risk of breaking a bone increases with age, it’s important to improve strength and to plan movements, as much as possible, to reduce the incidence of falls. Other problems that occur in people who are aging with CP include increased bowel and bladder problems and more joint contractures.
***

So, stuff.
My body and brain have been up and down in normal chronic pain ways, and now that I'm medically on the autism spectrum with Nonverbal Learning Disability, my doctors and therapists can focus on more specific treatments for the sensory and communication issues, and I no longer feel I need to justify why I do so many weird and fucked up things that make people angry. I'm not gonna use any of my disabilities as an excuse, because I find that revolting, but I will merely say, "Look, I'm super neurodiverse and I have issues, so just hang on a minute while I get my brain in order, okay?" I don't think I have ever been neuro-typical.

I've been venting on Facebook more than LiveJournal, which i find backwards, but I have so many friends on Facebook who are immediate and who know exactly how it is. I refuse to leave Livejournal, since it has been my home since late 2001, so I plan on writing here more and more, copying between here and Facebook.

So, I have been in a major depression episode for several weeks now. It has been quiet and lurking, like a huge tar pit, and every so often a creature rises with flashing claws and strikes and I break down and my insides begin screaming. It happened last night, while Adam and I were eating the rabbit stew he had slow-cooked. I randomly, suddenly began sobbing in heaves into a napkin, and Adam placed his hand on the back of my head gently - it's a gesture he does to Mikey to let Mikey know he is there and to guide Mikey in his blindness, and he's been doing it with me ever since we met. Adam began massaging my neck and shoulders, and then I began gasping and rasping "I'm sorry, I'm so sorry, I'm so so sorry..." and Adam asked "Why?" and I gestured violently at my body and rasped, "THIS. I just... I just... I can't. I fucking can't. I can't even eat a whole meal with out..." and I sobbed again and he held me and held me, and I cried about how broken I was and that i was a horrible housewife and how I couldn't do the things he needed me to do sometimes, and he said, "Honey, it's okay. You are so important. You pay our bills, you make the appointments, you keep the house from exploding, you remind me to take of myself. I bring in the money. I may break my back doing it, but you're already broken and it isn't anything you did, and that's okay. It's all okay. Everything is okay. I love you."
We had moved to the couch, and I cried and cried while he held me, and Jupiter came over and sat like a sphinx on us and purred with his entire body and we pet him and scritched him, and the creature in my brain faded.

Adam needed to wake up around five in order to go to his IT/AV shop in Virginia and then to New York for a job overnight. We went upstairs and prepared his luggage and had sex that comforted me and made me happy with the afterglow jokes, and then later, Luna came over in one of her precious rare moments and settled between us on a small pillow to purr us to sleep.

I still have this weird lump in my throat from... so many things. I still need to print out that form that my new psychologist needs for insurance and such, and on Friday, our second appointment, we may try hypnotherapy. I'll tell her about the spectrum thing just so she keeps it in mind. I think we'll get along just find.

I sent back the forms to get Medicare Part B, and once I'm enrolled at the end of the year, I shall enroll in Part C with Aetna, and then things should be cheaper for me. Next week will be the dentist and then the pain physician.

I still need to eat more.

And then... and then, there is this. Found and shown to me by the magnificent naamah_darling, it is the absolute ultimate expression of what I've been calling The Spear Theory (as opposed to the spoon theory).

Always. Forever. I am my shield and these are my spears. Because spoons can only do so much. The spear theory leaves me scarred and shattered and covered in the blood of my pain monsters. And after I recover and refresh there is a new set of shiny spears waiting to be hurled, broken, stuck in the bodies of my pain monsters, and repeat.
And as I rest and recover, spoons are there to help feed and nourish. But there will always be more spears.
I am a pain warrior. A warrior in an old way.
http://internal-acceptance-movement.tumblr.com/post/61136577036

And Naamah's thoughts:
http://naamah-darling.livejournal.com/633319.html

It is too perfect.