DEPRESSION - SOME PEOPLE JUST DON'T "GET IT"

Israel Robledo

(Reprinted from ParkinsonsOutreach.wordpress.com)

"Having seen the news articles today about Robin Williams’ Parkinson’s Disease diagnosis, this post from May 2013 is intended to share that not all that hear the news will understand the serious nature of what those of us whom deal with depression and Parkinson’s Disease have to endure. As a result of the untimely death of Robin Williams, we have been afforded an opportunity to raise awareness to a higher level and educate others to the greatest extent possible.

Some people don't have a clue what living with depression is about and just don't "get it". These are the most difficult type of people to convince that depression is real because these are the same people that don't "get it". It took me a while to realize this when, a few years ago, I asked a co-worker what she did to cope with states of depression or "down" days. She responded that she never got depressed. So much of my time had been spent on trying to figure out what I was doing wrong in dealing with depression, and all the while I had not realized that not everyone was affected by depression.

I have come to the conclusion that depression for me is not something to be embarrassed about. A mental illness is an illness nonetheless, and it is something that needs to be dealt with, attention brought to it, and encouraging people whose lives are affected to seek help to make their lives more bearable, which leads to a better quality of life. I've said that I've dealt with the symptoms of depression for more than half of my life. I tried convincing myself that it was something that all people went through. I tried counseling, that for me was a waste of time and money when I kept being told that I shouldn't feel that way and that there was more to look forward to in life. I tried different combinations of medications (prescribed by a family physician) for depression that seemed to make the condition worse.

The break-through for me, came from having dealt with depression in spite of having a Parkinson's Disease diagnosis, and being depressed as a result of having Parkinson's Disease. For many years, Parkinson's Disease has been known as a movement disorder. It has only been brought about in the last few years that it also has non-motor symptoms associated with it that had been dismissed sometimes flippantly as "it's all in your head", or "you're too young to have Parkinson's Disease, so you must be making these symptoms up'. As most of the people that you meet whom live with Parkinson's Disease, and those also affected by depression, what causes the symptoms may be part of the neurological system that includes the brain, but it is definitely not something that we sit around and conjure up just to make our lives miserable.

My movement disorders specialist, by virtue of having listened to the issues that I was dealing with, aside from the motor symptoms of Parkinson's Disease, recommended as part of my treatment regimen, an anti-depressive, that thankfully allowed for relief from the symptoms of depression. I see it as finally being able to step on solid ground, with a fighting chance of having a good quality of life, and knowing that things can get better.


What frightens me is that there are many people living with the symptoms of depression that don't know where to turn for help. If this post helps someone to realize that living with depression is not something to be embarrassed about and that it is possible to get relief from the symptoms, then sharing my journey will not have been in vain."

I linked back to Israel's original post and posted it here, because it cannot be stated enough: Depression Kills. Pure and simple, and when coupled with a diagnosis of some type of movement disorder (my particular brand of hell is called essential tremor, e. t. or "Parkinson's Lite" all the symptoms, only half the meds) the effect is all the more devastating for the simple fact that where you once had one battle that sucked, you now have two, and they REALLY suck. Probably the thing that bothers me the least is the fact that I am legally blind; no biggie.

But, as to depression and movement disorder, you are talking about two things that are just overwhelmingly hard to deal with. As Israel so rightly points out, you spend years of hearing idiot doctors say "it's all in your head" or supposedly well-meaning friends tell you to "pull yourself up by your bootstraps". In my case, this advice led to some near-homicidal behavior on my part, because I know it's all horseshit. The doctor was one of these guys who had one foot out the door on his way to retirement, and when he tried to blame my condition and my description of my symptoms on my bipolar diagnosis (which was new) I looked at him and said, "But, I had these symptoms BEFORE I was diagnosed!" to which he had no answers and no more straws at which to clutch. The primary concern for him, was that I was on Medicaid, and I would have to wait another entire year for Medicare, although I already had my full Disability, in a record 5 months time. 

To my one jackass roomie, who tried to tell my other roomie in the homeless shelter that she needed to "pull herself up by her bootstraps", it took two men to keep me from throwing her off the porch. So reminiscent of what I had heard from my own mother, although she herself suffered from depression and tried to commit suicide when I was seven years old, it brought a white-hot rage at the unfairness of such a statement. My poor mother, caught in the grips of a suicidal depression and a bleakness that was unfathomable at times, naturally took it out on me, the only child. But, her childhood was far worse. One of the wisest decisions I ever made was to NEVER have children and I can enjoy my friends' kids and now, grandkids.

But, this is about a man who was loved and adored by millions. What I find so striking and in hindsight, seems so apparent, but isn't it always, is this: Robin Williams comedy always had a tinge of the desperate to me. He WANTED and NEEDED to be liked so badly, and tried so hard. What seemed so effortless to some, seemed frantic to me and this is no criticism; it is an observation. God knows, I've had my share of neediness, and it's not worth a shit. I got waaay over that with husband number three, the God-Forsaken William Nunnally, philanderer extraordinaire. What a poseur and phony. 

But I am mentally ill; make no mistake about it. I tell everyone. I have seen God in an ice cube, licked the windows and tried to sleep in the fridge, during a psychotic break, after no sleep, because my Daddy died in his sleep. The fact that he died in 1987 and the psychotic break occurred in 2012, some 25 years earlier, makes no damn sense whatsoever, but there you are. I lost time, and spent a March I don't remember (Mental Awareness Month!) in the hospital. When I came to, the first thing the doctor asked me what I was trying to do. I wasn't entirely sure, but it wasn't trying to kill myself. I was trying to keep from NOT dying. . . or something. He lifted the Baker Act, which he declared the shortest in history, and turned me loose three days later.

I manage the SHIT out of my disease and my e. t., but I can pull the crazy card, when needed, since I live in an area where Batshit Street and Dumb Avenue intersect. We had the great good fortune of having the stupid guy who was a pain in the ass in the Family Dollar Store, become a pain in the ass to one whole city block, two blocks south, a week or so ago. Somehow, word got out that "he had guns or something, and a girl or something" and this part of town, being this part of town, the next thing you know, the Tampa Police Department show up, with what looked like fifty SWAT teams, and evacuated all of the block on 18th Avenue. So, no one could go to church, or the diner, or whatever the hell they do on Sunday mornings. 

Anyway, seven and a half hours later, they figured out with infra-red, or something; maybe a crystal ball, that there was only one individual in the house, so three or ten of the SWAT teams kicked the door in and cleared the rooms. They found the culprit, hiding in a back bedroom, curled up under one of the beds. I guess his Hogwart's Cloak of Invisibility had worn off, or the warranty was no good. Honestly, did this igmo think that once the TPD hauls out the heavy artillery, they're just gonna go away?

I bring this up, because I am in a Clinical Trial and occasionally I have to leave at around 6:15 am and catch the bus, to go downtown to get another bus to go to Armenia Avenue, where the Clinic is. It's usually calm and quiet, but a few mornings ago, I was standing there in my armor, with my cane and backpack, dark glasses on. Here comes Otis, or Ice, or whoever, after being up all night, pants dragging around his ass, and he starts in "Dey bitches took all mah money and cigs, now I don't usually ask, but" -- I hold my hand up. "Stop right there. I am not giving you any money and I don't smoke." So, Otis/Ice/whoever starts again. I hold up my hand and repeat myself, a little stronger this time. Take number three, "Dey bitches--" I explode "WHAT FUCKIN' PART OF I'M NOT GIVIN' YOU ANY FUCKIN' MONEY AND I DON'T FUCKIN' SMOKE, YOU FUCKIN' FUCK!?" Dude left the scene like his ass was on fire. I do not hesitate and if they want to get physical, I can do that to. Living on the streets and mental illness will do that to you.

Aside from that, I have to say that we are here for each other. I have a network of friends online, and in real life who suffer debilitating depression. I have been depressed this summer, but it's situational and personal, and mainly the reason I have not been writing. Like Stephen Frye, the sun will come out again, that I know. It's not over for me at all and my health is good. My life is not at all what I imagined it would be, but it's a rich and full life. I'm not a failure, and people respect me and what I "do" although sometimes I'm not even sure I know what I do. I still fix computers from home and help my neighbors. I even have an audition coming up, which I never expected. Trying to play with e. t. is a bit challenging. I have to play when I'm on those meds.

But, for someone like Robin Williams, who was so very gifted and so loved to have taken his life is such a goddamned shame and unconscionable. People still treat mental illness as if it were something shameful and it's not. It's a cold, hard reality and it's a lying bitch. If you listen to her long enough, you'll buy into her lies. I choose not to, because I scream, shout, yell it from the rooftops and from the mountains: I am MENTALLY ILL! But it's not who I am.

I want to give a very special thank you to the Parkinson's Foundation and to the Byrd Center at USF. They are one of the Parkinson's Centers of Excellence and they have provided me with the most AWESOME neurologist in the world and the finest of treatment, which my Medicare does NOT COVER AT ALL. Although I have e. t., it is said 1 in 4 people with e. t., go on to develop Parkinson's Disease. This is not a death sentence. It is a life sentence. We live every day in this moment; it is all we have. Don't waste it!

#ROW80 4TH QUARTER 2013 – WEDNESDAY CHECK IN – AMUSING VISITORS & JC'S COMMENTARY

Somehow, JC and I have managed to become social butterflies without ever leaving the house. Of late, since JC took his bad fall, his classmates have naturally, been quite concerned, and were calling him to see how he was doing. Well, as time went on, and his recovery was being prolonged, they began asking if they could visit. Naturally, I said, “Of course! Invite them over! They're always welcome!” Understand that this is a class rather like group therapy for people who have committed crimes, and the classes are part of the terms of their parole. And yes, rather than making everyone read between the lines, or insult people's intelligence, JC is a felon. JC is also the only man who has ever treated me with the kindness compassion and unconditional love that we all deserve. He is my rock and so steadfast and loyal, in a world where that means nothing. I know of no finer man and I trust him with my life and I love him unreservedly. I am the luckiest woman alive.

The only reason I am not, and 90% of the population with no arrest records is this: we never got caught. Everything looks worse on paper, and I long ago discovered that people with “pasts” and records are much more trustworthy, than the so-called normal, run-of-the-mill populace.

Because of the nature of the stigma applied to people who have been imprisoned, committed for mental illness and have been homeless (I really, really need to get myself arrested to get that golden trifecta, just kidding) I have gone out of my way to let them know they are welcome here. Because what's past is past and this is now. If people are going to look down on us because of what we've been through, either through stupid choices, mistakes, or bad luck, that's THEIR problem, not mine. I will hold out my hand to anyone and try to help and comfort, until I am given good reason to doubt their sincerity and their honesty. I am no less of a person for having been homeless and then, Baker Acted for mental illness. I would go so far as to say I am stronger for it and it allows me to be that much kinder to those who have REAL problems. But I am one mean mutherfuckin' bitch, as they say here on Nebraska, if you cross me, or hurt others. But, I digress.

My life was nothing at all like it is now. In 2003, I had everything, or so I thought (well, except for the asshole of a husband, Bill Nunnally, who reads this.) Never, ever think that this cannot happen to you.

So, JC's class buddies (who I think he thought didn't care, because he says he's just an old man and no fun and blah blah blah) have been coming to visit and see JC, who is glad for their company. One young man, Aron* is a viola player and also plays guitar and bass guitar. He's been bringing over his instruments and we've been looking at ways to improve his playing. Aron's friend, *James and his girlfriend, *Camille, came along one afternoon and while Aron and I looked at his guitars that day, she and James and JC were talking about sports, or whatever. I can't remember.

Nice-looking dog; not as nice as the guitars Aron brought over and played.

JC starts talking about Mr. Cantrell's hunting dog. Back when JC lived in Texas, he and this friend used to go 'coon hunting. I think JC just went along for the entertainment value. Mr. Cantrell had 2 or 3 old hound dogs at the time and he bought this beagle, who he was just bragging all about. “She's the best; she can find 'coons here, there, everywhere.” That sort of thing. The way JC tells it is hilarious; I started thinking she was looking for the Scarlet Pimpernel. Anyway, one fine Saturday, after 3 weeks of bragging on this hunter, Mr. Cantrell and JC, load up their dogs and go 'coon huntin'. The beagle had never been out with Mr. Cantrell's dogs before.

They opened the back of the truck and the dogs took off. JC had some old mongrels that pretended to hunt; they'd go about 1/2 mile and sleep in the underbrush. Never caught a damned thing. But, Mr. Cantrell''s dogs are baying and the 2 men go haring after these dogs. They get caught up with them, and these dogs are baying at nothing. And the beagle isn't there with them, she's like 3 miles ahead, hollering. So, off they go, chasing the beagle. This happens about 4 or 5 times, and Mr. Cantrell and JC are like, “the hell with this; we're plumb wore out.” The other dogs had been long gone and were in the back of the truck asleep, when a weary Mr. Cantrell and JC returned. Off in the distance, they could hear the beagle baying.

This could be kind of a "Where's Waldo" thing. I couldn't find anything else, so this is just a random picture. I wanted to post this before 2020. So, where's Mr. Cantrell's hunter?

“She's just gonna have to find her own way home.” She never did and is either still huntin' 'coons, or been taken in by some other family, or maybe several families. When JC was done telling this story, which always makes me laugh, to James, Aron and Camille, I had had noticed that Camille was becoming increasingly restive and kept going into our bathroom. I kind of figured she was going through my stuff, but didn't really worry about it. This poor girl has mental problems and was molested by her stepfather and she's really a sad little person. She has horrendous physical problems with Type I Diabetes and people aren't patient with her. It's not a question of her being a thief or anything; she doesn't understand what is appropriate and what is not and I get that. I think she's a nice person and when I talk to her one on one, she's attentive and listens and is honestly trying to do the right thing; she's another long, long heartbreaking story.

Sad, but a sweetheart. Worth the effort, but people don't want to take the time.

So, just as they're getting ready to leave, Camille says to me, “Do you have any perfume I might, like use? I don't have any. Just a spritz.” So, I knew she'd been looking in my cabinets; I have some dollar store knock-off j-lo, that is 1/3 full. For some reason, known only to him, which he has yet been able to explain (not that he needs to; it only adds to the hilarity) JC rears up out of the blue and blurts, “Perfume? That'll make you smell like a whore!” And, ohsweetjesus that went right over her head. She just giggled and said, "I want to smell nice for my fiance, James!" JC had this look of absolute horror on his face. The kind of horror you see at the old Saturday matinees, when the kid is just about to get eaten/trampled/gouged to death by mutant ants/chinchillas/swamp monsters. JC had the look of horror on his face like that guy on the "X-Files" opening credit, whose face melts during the theme song. It was marvelous to behold. 

Well, I couldn't find the melting guy, but I found this, and this is pretty darn close to how JC looked after he blarted out his comment viz a viz perfume and whores.

He looked at me. I had nuttin' just blank. My face looked like Gort from "The Day the Earth Stood Still," lacking only the cyclops eye, that radiated death, because? My mind was a total blank; fried circuits everywhere. I didn't think “Gee, does JC think I smell like a whore?” or “Gee, how would JC know what whores smell like?” I rebooted my brain and thought some completely unrelated bullshit thought about a job I was doing, “Damn, I sure hope I got that system loaded before that old skinflint leaves town. I want my money” I opened my mouth and said, “Camille, wait right here.” I got the 2/3 empty j-lo bottle and gave it to her. She was delighted.

I was looking kinda like this, except for the laser beam coming out of my one eye. Right about then, my CPU did a memory dump and I'm lucky I didn't display a blue screen of death or one of those hexadecimal errors. Boolean logic is positively emotional compared to me.

It got funnier that night when JC said, “By the look on your face, I thought you were gonna say, “y'all are fixin' to have to leave now. Ima gonna beat the shit out of him for calling me a whore. Unless acourse, that is, you'd like to stay around and watch.” I said, “you weren't calling me a whore.” He said, “my other wives would have jumped right on that shit and I'd hear about it for the rest of my life.” I said, “I can do that; why ruin your fun?” We both went off in a gale of laughter again, at 4:30 am. The poor man next door got up and went to work, muttering something about “Goddamned retirees...”

*Aron, James, and Camille are all aliases, I would never use any of our friend's names without permission.

#ROW80 POST 13 – THE QUESTION

“What makes you think you have Parkinson's Disease?” Dr. Deborah Burke asked me this question after several minutes of very insightful discussion and quick, probing questions, which I readily answered for her. I had done my homework and I realize that these doctors at the USF Byrd Center have only so much time to spend with their patients, even the new ones.

Dr. Burke is kind and compassionate and again, possesses a kind of intuitive grasp of things, while maintaining a discipline (staying in her “box” as she terms it) to help keep a patient on track. And lordy, I am a handful and I know it. Having worked in a teaching hospital for 5 years, has given me the ability to understand systems at an extremely rudimentary level, but when you're working with doctors who are teachers by nature, they don't care who's asking the questions, even if it's a wet-behind the ears viola student.

The hurly-burly chaos of a huge hospital that housed some 9,000 souls, many from different countries, also sharpened my skills as an observer, rather in the way the ancient Greeks learned about how things worked. The power of observation is so overlooked; and is a marvelous tool, both within, as well as without. I, of course didn't think of this at the time, when Dr. Burke asked me a question, which literally shut my pie-hole, for a minute. I was flummoxed and several things came to mind, and I went “ah, err, lemme get back to ya on that one.”

She was okay with that. She had me do the walk up and down the hall without whackamole (my controlled fall thing,) some hand thing that reminded me of that awful Disney song “We Are Siamese If You Please,” (my father always cringed at that) and try to draw a spiral, after hers, which was shaky. She then had me write a sentence, which she said, almost apologetically, “this looks like essential tremor.”

We had already gone over the lack of smell, drooling and my horrible new voice, which is just, whatever it wants to be, except what it was for 56 years. Hoarse, croak, weak and unintelligible. I'm going to learn semaphore; the flag thing. Then I can lug around 50 or 60 flags. I'll get it wrong, and tell people to walk out into traffic, which is a bonus around here anyway. It will be quicker than trying to holler and then spitting on people. Another bonus for PD or whatever this is.

I have noticed that doctors of all stripe seem to be really hung up on the tremor thing, but it's not that simple. I have them at different times. They stop when I do something that requires real strength and I have tons of that. I can't play my viola because the delicacy needed to balance the bow and do spiccato and skip around and just even pull a long bow-note isn't in my bag of tricks, or it's hiding. So, I have to leave it alone. I get almost suicidal at the thought of NEVER being able to play, even if it's just for me and that is not going to happen. I am a master at interpretation and long, slow passage work. I'm not boasting, just stating a fact. But I need to be able to feed that beast.

Nobody puts Wolf in the corner.

Play me NOW!! I'm gahddamned history. I was built only 10 years after Beethoven died. PeeDee, ShmeeDee! Get off your lazy ass and play some 3-octave scales. A minor. NOW!!!!!

So, when I thought long and hard about what Dr. Burke asked me, I came up with this answer: intuition, but I didn't voice it. I had my first tremors a week after I was released from the mental ward after my Baker Act. In the middle of the night, when they woke me up. I had experienced some numbness in my hands and forearms in the hospital, but not tremor one.

The Byrd Center also houses the Alzheimer's study and Research Center

The only thing I knew at that moment about Parkinson's Disease, was that Michael J. Fox and Muhammad Ali had it. Why I made THAT connection, I have no idea. Rather than being scared out of my wits, I started reading about different pathologies and etiologies of various neurological conditions. I realized as I was reading, that I had been experiencing some type of PD symptoms for at least 15 years. 

I also realized, through remembered observation that my mother had that type of early-onset disease. Tremors, thousand-yard stare, along with her depression and suicide attempt(s). These were many occurrences with her. Not just once, or twice, but over a course of decades. Coupled with my father's alcoholism, and I was very upfront with Dr. Burke about this, along with my own history, she understood, what I was saying. I didn't tell her about my intuitive reaction. I'm saving that for the follow-up, whatever the diagnosis. She's been so accommodating and kind. This is the type of doctor you want to keep, FOREVER.

We laughed when she said, “I'm sorry to keep harping on this, but your own depression, prior to your psychotic break, when did it begin? Because I get a sense of the chicken, and the egg and the alcohol and the chicken, the egg...” making circular motions, until she got all confused. I said, “Yes, I understand.” Grinning, I said “I was 16. My mom was the co-dependent and living hell. My father was not unkind, but he couldn't cope. I just saw blackness, but I never considered ending it. It's just been there.” Like anything, it waxed and waned. Situational and work, diversions; I took little medication. It's impossible to play the kind of music I've played and take anything. I didn't even drink caffeine. One year, towards the end of this impossibly booked tour, we were in Miami and had 3 performances of Gilbert and Sullivan's "Mikado." I was dead on my feet and drank a Coke. I could hardly keep my bow on the string. Oh, and the "Mikado" is 3 hours long. Disney makes you play like that; it's one reason I ditched them for Warner Brothers, besides who doesn't want to play "What's Opera, Doc?"

Fun Fact: "Ride of The Valkyries" by Richard Wagner (the rest of that entire scene is a bitch) can be played in 4th position on the viola and you barely have to lift a finger! But you sure flap that bow arm! Impressed? Yeah, me neither.

So, all this time; there are always stressors and prices to be paid. My parents were not bad people. I, by far, did not have the worst childhood. I have heard so very much more tragic stories from people I love dearly and people who are far better than I. I have no one to blame, not because my parents are deceased, but because they did the very best they could with the meager tools they were provided. My mother and I mended our broken relationship before her death, which I am so very, very thankful for. My father, in spite of his lackadaisical ways, was my primary caregiver. Although, my mother bore me, my father brought me home from the hospital and raised me. That is why, I was never a very good girl-child. Being an only child I would prefer to while away my time with my computers, music and writing. I made a decision early on to not have children, and I am glad I stuck by it. It was probably one of the few wise things I've done. JC is the other; he is my rock.

JC always knows how to show me a good time. I laughed like a hyena over this. Sweetbay is so used to us, they don't bat an eye at any of our goings-on. Of course, the store is on Nebraska Ave., 33605, where everything happens. This is just one of the many reasons I love him unreservedly.

It took 10 minutes of me hollering and telling jokes and being, well me to get him to smile. He usually looks like a wooden Indian, or like someone just told him his house burned down.

The other thing I have begun to experience and follow as in over-riding my logic and letting intuition take over, as in the case of PD (I am almost 100% certain that is what this is) is that with the winnowing away of more of my senses (sight, smell, some of my touch, hearing is odd, hallucinations sometimes, when sugar drops) is a heightened increase in compassion and empathy for others. This sounds like some kind of hypocrisy, because I'm not good around people, but I have Asperger, or "doesn't play well with others," as they used to say. My psychiatrist and I laughed about this yesterday; it's agreed that I have bipolar I, but "pseudobulbar affective disorder: cry at nothing, laugh at morbid shit?" I told him I've been accused of bad taste for years and I don't need a pill for it. It's my bad taste. Anyway, while still quick to humiliate and take on the real asshats of the world, both verbally and physically, I am even quicker to recognize and praise or aid those who need it most.

courtesy: James Thurber's "My Life and Hard Times"

Caption Reads: He Caught the Same Disease That Was Killing the Chestnut Trees

I read most of James Thurber's books by the age of 9 or 10. For some reason, I found this hilarious. I still do. Leave my bad taste alone. It's funny. I don't want blah. I want the misery, hopelessness and despair, because behind that is the joy, elation and hilarity of life.

Yesterday, as I was leaving my Psychiatrist's office and making an appointment for August, I felt this jolt on my right elbow. In any other situation, I would have whipped around and been pretty keen on finding out who was invading my personal space. Something stopped me from reacting that way, however. I carefully turned around, and there was this darling little girl. She was a child with Down's Syndrome and she had a cast on her right arm. She pulled on my shirt again, and waved and smiled. I waved and smiled back. Her older brother was there, too. He didn't have Down's Syndrome, but what the Hell. I pulled on his shirt and waved and smiled. He did the same. Their Mama grinned. I was so elated. Beethoven-elated. “Ode to Joy” elated.

So, I believe I have PD. We'll see what the DaTScan says. Then, as Dr. Burke says, “We'll go down SOME road together.” Very cool. DaTSca is June 20th, then I make an appointment for my followup. So, we shall see, what we shall see, no?

BLOGGING CHALLENGE FROM A TO Z APRIL 2013 – LETTER “P”

PARKINSON'S DISEASE

I have talked about the fact that this is Parkinson's Disease Awareness Month, as well as the Blogging Challenge from A to Z month. What I haven't talked about is the advancement of and discovery of my own manifestations of this complex, progress and elusive disease. It's different for everyone in the way it develops and how we choose to react to it. Simply put, Parkinson's Disease is a condition where your brain ceases or slows it's production of Levadopa, a sort of "governor" endocrine chemical that regulates several of your autonomic bodily functions. Without it, weird things happen.

Well, not quite this weird. I thought I was taking a picture of the cat in the next room. This is the stove. It's fun being legally blind, or bland as my "friends" tell me. One of them said I had a future in Paranormal TV.

Depression and other mental aberrations are a frequent companion, as well as the physical symptoms. I have more trouble with tremors and later in the day, in my hands and my head and neck than any other part of my body. I do have dystonia (fancy-shmancy for cramps) in my feet when I sleep and have horrific sleep disturbances and pain in my shoulders, chest, neck and back. The pain is atypical from normal aches and pain of aging and often mimics heart attack or stroke. The back pain is not at all typical and is a deep throbbing, almost to the beat of my heart and so deep that it can become incapacitating. I have had most of these symptoms going back for the last 15 or 20 years, which would put me in the category of young-onset. They were never constant and months would pass without any symptoms at all. I did not have tremors until last March.

 

This is the cat and JC. You can see 2 white feet and also tell we're slobs about bed-making.

A little history is necessary here. I was homeless from September, 2010 until August 2011. I spent 2 months in the hospital, taken from my then-house in a domestic. I had to learn to walk again. Lots of stupid on my part, but I learned and learned for good. I have a great life now. I was already legally blind and had been since 2004. Anyway, after all the trauma and an admission that yes, I was clinically depressed, I started treatment. I received my full Disability based on my hospitalization, after 5 months, a highly unusual move by the SSA.

So, after all the trauma and drama and blah blah, I moved out of my homeless shelter. That's actually how this blog started; with my Homeless Tales, but, my sweetie and I got moved and life was good. Until February of 2012, when for some odd reason, I started being just hyper. All the time. I couldn't slow down, I couldn't sleep. At all. I don't think I slept for maybe 1 night out of 8. I was doing ridiculous things like solving quadratic equations, blogging, gaming and watching “X-Files” all at the same time. I had always multi-tasked, but this was ridiculous.

This is the cat through my fancy lamp. I give up.

At some point, I slipped and I don't remember a thing. Just huge hunks of time are gone. The next thing I do remember, is being in the Mental Ward of St. Joseph's Hospital and I had an attendant. I was not restrained. Pretty soon, a psychiatrist came in, and asked me “What were you trying to do? Kill yourself?” I said, “No, but I couldn't sleep.” I had been out of sleeping pills and taken a bunch of benadryl, according to JC and I believe him. The doctor talked to me for a few more minutes, and he decided then and there to lift the Baker Act. He was nice and visited me a few more times. I noticed then, that I was having some tingling in both hands and the psychiatrist brought in a neurologist to look at them. I have very strong hands and there was no weakness in either of them. So, they kept me for a few more days and sent me home. My own psychiatrist tested me and said I was bipolar, which I know now to be true, although at the time, I thought, WTH?

Medication helps that. But, that psychotic break was a point in time for me. Pre-psychotic break, I did not display overt Parkinson's symptoms. Post-psychotic break, I do. The tremors started, very faintly at first, a week after my hospitalization, and have only worsened. Having this has made me dig into the literature and watch a lot of really horrible videos on YouTube, with boring doctors from the 60s, wearing giant suits from Robert Hall and huge black, plastic-rimmed glasses. But the information is sound, if you can stay awake through their lectures..

Nobody has the same PD. We all have designer PD. My friend Jim Adams and his wife Penny who run the P.A.N.D.A. foundation for Parkinson's have similar symptoms, but others are present as well that I don't have. My symptoms have tremendous psychological overtones. I have periods of dementia and have learned how to deal with them and overcome them. They are usually brought on by a precipitous drop in my sugar, although, I am not diabetic.The great thing is, I remember them now. Actually, to me? The hilarious thing is this; I'm legally blind. Before all of this, I had trouble getting the mascara wand back into the tube. Now, it's like a midway carny game. Some days I can't comb my hair. Not that it's an improvement anyway. Now, instead of being 15 minutes in front of, or behind my next or last stupidity or gaffe, it's more like 7 minutes. When I'm in Chat rooms, I tell everyone to get out their Mary decoder rings and live with it, 'cause I ain't fixin' no typos. And it's great for those nights when I don't want to cook, which is happening more and more frequently. “Honey? Do you mind cooking?” “No dear. Here's a nice bowl of Cheerios and water.”

It is what it is. I love life and this is just another speed bump. I have to think back to when I first was blind. I was incredibly angry and frustrated. This hasn't been so bad. There are times I get down. I had an incredibly dark period, not so long ago, but it always passes. Time will fix it. As Stephen Frye says, it's the only way to approach a bipolar condition. That can be applied to anything. The choice is up to us. My fabulous friend YumaBev, who writes "Parkinson's Humor" is one of the most singular upbeat, terrific people I know. Her life has been one of tragedy and heartbreak. She recently had DBS, which is short for Deep Brain Stimulation, to help curb her symptoms. Like most brain surgeries, you have to be awake. That right there is reason for me to NOT have that particular procedure. If you are going to be poking around in my noggin, I want to be stone-cold out. "To each his own," said the pig as he kissed the cow. Anyway, Bev blogged about it and she was scheming trying to figure out a way to live-blog her surgery. It was pretty hilarious. But, that's Bev, one of my true joys and inspirations in a world that has few.

This is pretty much how Bev always rolls! My hero!

ROW 80 POST 42 – THE RISING OF A DARK NIGHT, PART 2

I didn’t realize that when I wrote this piece that there would be a part 2. Aaron responded to my 1^st post and that spurred further thought. So here we are; I want to quote him:

“I hope this will get people to become more proactive and realize that so much was lost yesterday in innocence. The young man that did the senseless tragedy is responsible. All of the events make me question a world gone mad. A world where we teach our young boys not to cry or feel emotion. We show them examples through the media of other men that are bumbling idiots or uncaring fathers. Young men are unprepared for the perils of the world and they don't know how to get help when they need it because we are teaching them to "be a man." In my opinion, a man is a person that is not afraid to ask for help or too prideful. I will continue to blog and hopefully show the world that boys and men need positive role models and maybe I can make a difference.” -- Aaron Brinker, dadblunders

That is the heart of the matter right there, I believe. Boys are taught to be “men” and not show their feelings. They bottle up their emotions. I recognize this, because I was raised this way, by my mother, not my father, perverse as that sounds. My mother accused my father of being “weak,” when he shed tears, yet she was the one with the psychosis, as am I. To my detriment, I do not cry easily.

In general, when tragedy strikes or we deal with injustices, we turn to humor to use as a bulwark against the pain. In the case of the killings of Americans in Libya and the subsequent furor over the extremely provocative “Muslim Rage” cover in Newsweek, which was completely tasteless, Muslims and non-Muslims, like me, hung out at #muslimrage to make fun on Twitter. “#muslimrage “I hate when the hummis goes off.” It became ecumenical: #catholicrage “when the priest drinks all the sacramental wine.”

Humor is wonderful as a balm and to diffuse even the biggest blowhards, but it can’t bring back the dead, nor heal the broken-hearted. What we are left with is often a sense of bewilderment and helplessness. For someone like me, I understand all too well, how the heart of darkness can intrude.

I have written before of my mother’s mental illness. She was raised by people who were incapable of raising healthy children and should never had had any. The fact that the youngest son of 3 is relatively healthy, but clueless is more a testament to my mother’s care and protection of him as a child, than any actual raising done by his parents, my maternal grandparents.

My mother suffered as a child; much of it, she wouldn’t speak of. Suffice it to say that my childhood was pretty awful, and though when she died our relastionship was mended and I loved her dearly, it has taken me 57 years to gain the insight I’ve garnered. This is no one’s fault. Insight and growing is arduous and change really, never stops.

Anyway, I was a lousy girl-child. More a boy-child in thought and temperament. I was taught to fight back and make bullies pay and pay hard, although my mother bullied me ferociously into adulthood. My father, being the mellow soul, watched over me to make sure I came to no real physical harm. He too, was a victim of emotional bullying from her, but was staying in the marriage I believe, until I was grown.

She left him when I took off for music school. To say that I have Asperger  syndrome (note: at the time this was written, ABC News has helpfully highlighted the fact that there is NO link between violence and Asperger. I thought I was just socially inept all these years...) and do not relate well with people is to put it mildly. After a series of disastrous relationships, broken marriages, drug and alcohol problems, homelessness and ill health, Parkinson’s Disease, or non-Parkinson’s-Disease-that-is-the-question, bipolar, mental illness, psychosis, but perversely, great careers, I’ve finally figured out that I’m not the person my mother wanted me to be.

Gee, what a shock. So, I hate when I start on one topic and it ends up here. But, in explaining all of this, I’m also telling you, that there is something in me, that lurks. That is very dark, indeed. I try to keep it tamped down. It is “impulse.” It roars up, like a lava flow. It tends to come out at the oddest moments. It engulfs like a hot wave and it does, indeed fill my limbs with heat and light. I feel it when something good is about to happen and when I witness the bad. It is something atavistic and it scared me, at first.

It feels about like this looks. For real.

"Angel" is about a vampire who was given a soul and spends his time trying to find redemption and forgiveness for all the wrong he has done over centuries. I can relate, and identify somewhat with both sides of his character, and also how quickly he shifts from the light to the dark. Maybe we all walk that tightrope carefully. JC always says to me when I leave, "Be nice," and in the main, I am. I know I carry something that can easily be used as a weapon. I'm aware that I have to play chess mentally and try to be adept in situations that may need defusing. Not my greatest forté; diplomacy. I've been better lately, with JC's help.

The man got on the bus shortly after I did; I was riding to my local grocery store. The man was short 11 cents. He fussed around for a minute, searching his pockets. We waited a good while. The bus driver was not moving until the young man coughed up the 11 cents. I’m in patient, but not-THAT-patient mode. I sigh. My PD tremors were not noticeably bad. We were still waiting.

This young woman comes tearing up the aisle and puts 11 cents in the change hopper. The two of them go running to the back of the bus. The bus lurches off. The couple come tearing up and plop down in the only seat; the one in front of me and they have a baby. They’re both frantically fussing over their baby. They’re both neat and clean. The baby is clean and bundled up. This family is homeless and they’re on their way to a feed. 

They’re probably new in town. This is my home bus route. Everyone knows me on this route. There are several feeds and services for the homeless along Nebraska. I had an extra 5 bucks, so I handed it to the woman, as I got off the bus, saying to her, “It gets better, honey.” The man started to cry. My limbs were on fire. I hop off the bus and hear “Ha ha, Viola, you a crazy bitch!” My usual fan club.

I think this dark and light is in all of us. I see reports about these young men. They’re described as “geeks, loners, bright.” They may be “geniuses.” I’m no “genius” but, what is that, anyway? Everyone is peculiar. We could so easily be that way, or could we? I cannot for one minute imagine harming another person, especially, a smaller, weaker one.

My psychotic moments are rare and I am not a harm to others when they occur. I get confused, which is funny, because I am confused most of the time anyway. I call it my confuse-a-what. I remember them now; I didn't when it first happened. This is all beside the point. My fears, or psychoses have to do with my overarching fears of not having any security, so if everything isn't so, I freak out. Well, it's really funny if you think of it like that, because when is anything every like it should be, we're talking about PEOPLE for goodness sake! Nothing is ever where it should be! But, moving on, this isn't about me. I'm really harmless, unless I decide not to be and I'm iron-clad on being harmless, unless someone gives me a damned good reason not to be. See? 

But there’s no balm, no easing for wanton destruction of innocent life; here’s where I can’t stop the confuse-a-what. Other than trying to help pass stricter gun-control laws. Other than talking about this now and speaking out against the NRA and starting one of my endless and famous SignON.Org petitions which delights Rick Scott, Governor of Florida and his Minions. Other than that, I got nuthin’ as the song goes. Except an empty heart over this. This tears me up. Both JC and I are stricken. Everyone is devastated and when people are so universally affected by a tragedy of this magnitude, something is deeply, desperately wrong. We have ignored so many signs and warnings. We may not get another.

ROW 80 4th QUARTER - POST 4 – TRIP BACK IN TIME TO GESTAPO HEADQUARTERS AND JEFF’S DEATH, PART 1

After my much-anticipated trip to the Neurologist and what I was sure would be a slam-dunk “bed-side” diagnosis of my Parkinson’s Disease (you have to exhibit 2 of 4 symptoms, there are NO quantifiable tests), I came home in a frazzled state of mind. Worse than my usual state of mind and felt I had been set up. I had all of my paper work and all of my ammunition; MRIs, EMG test results and corroborating documentation from leading neurologists.

The verdict? “We’re not sure you have Parkinson’s Disease; you also have malnutrition, you need your thyroid checked, you take B-12 injections every month, you’re blind. You have mild neuropathy.”  They blinked at me and here came the zinger, “You’re bipolar.” More blinking. “We must rule out stoofs.” This after almost two hours of neurological TORTURE and making me run into walls and try to touch their goddamned fingers. I CAN’T SEE, YOU STUPID SHITS; DON’T MAKE ME DO IT 20 TIMES. I am not an act in a circus.

No. Fucking. Shit. Guilty to all of the above, but for one, assbites. This shit has gotten WAY worse, every fucking symptom I just told you about over the last 2 MONTHS. The tremors, the pain, the ear-hooting, the 1000-yard stare non-vision, the neuropathy, all of it. I’ve had all of that other shit for years. So, tell me, Dr. Mengeles, why the FUCK didn’t you just come out and say “We’re going to wait until Medicare will pick up the tab in March of 2013. We have no intention of lessening your suffering until then.” Fuck you, you Nazis. And Dr. Mengele? If you ever, EVER barge into a room again and say to me “Why are you here?” in that tone of voice as your first word of greeting to me? I will behead you. I mean it. You suck. You can just goose-step right out into traffic.

This Guy Would Have Been a Better Doctor

I was all set to go off and sulk for 2 months or stay up for a month or set my hair on fire and run down Nebraska Avenue, 33605, but the last time I chose number 2, it earned me a stay at the State-Subsidized Happy Acres. Rather then eat a bunch of pills, stay up for several weeks, have a psychotic break, try to climb in the fridge, go back and play “Wheel O’ Death” with those fine folks at St. Joseph’s Hospital, I decided to write about it instead. Besides, and this is the worst, not the possibility of dying; the fact that I would do something so wantonly callous and thoughtless to JC and possibly leave him behind. That leaves me colder than cold.

One of our compatriots from the shelter died, precisely 5 weeks after Wade died. Jeff wasn’t well and didn’t really take care of himself, but he had a companion who looked after him, Dana McKinney. Ms. McKinney is a dear and loving woman. She promised Jeff, that he wouldn’t die homeless, and she saw to it. I weep now as I write this. I couldn’t always understand their connection. They were rather like 2 children. He would get a bit huffy and leave her behind, but in the end would always return where she would be waiting patiently. Sometimes, when people aren’t well, they require a great deal of patience. We all require a great deal of patience.

She would come by and visit us after we moved, every so often and they were doing okay. He was still working, but had put on a great deal of weight. I didn’t really care for him, because he could be loud, and I was concerned for her. As always, I’m on the outside. I once again, for the millionth time, have had the lesson, “Thou Shouldn’t Judge,” driven home. So has JC. He was critical of Jeff as well and worried about Dana; we needn’t  have.

They moved about 2 months ago. About 2 weeks ago, Jason, who still lives at Happy Acres texted us with a very confused message about Dana and Jeff had died. I called Dana and got an answering machine. She, then called Jason, who called me and we were on some weird 3-way phone connection. Jason is in the main Guy/Frat Party house standing next to Mike, the Manager who’s on the house phone talking with Dana, who’s on the hospital bedside phone at St. Joseph’s with Jeff, who’s in the process of dying. Jason’s on the phone with me, so we have this fucked-up round robin of death thing going on. I want to do nothing so much as hang up the phone. This is so Nebraska Avenue, 33605. Touching, yet a scramble-fuck-wheel-o-mortality of hilarious. These are dear, dear people. We really do care. Possibly because in many cases, we’re the only family we have, as fucked up as we are.

I can hear beeping and yelling from the hospital. I can hear some kind of football game “12 to 3 Bobcats!” and cheering. I can hear somebody threatening someone with a knife “Yo Dude, dem’s my Twinks; I be cuttin’ yo ass! Git yo hands off ‘em!” and rap: “BOOM-dada BOOM-dada BOOM-dada” in the Frat House. Dana’s quiet hitched-in sobs. Jason’s breathing. Mike and I are silent. I’m standing next to JC. He’s looking down at me with his blue eyes. He has such blue, blue eyes. Beautiful eyes, with black lashes. We always argue over who has the prettiest blue eyes. He does, by miles. I look down; I’m welling up. Gradually, I notice the sounds dying out, the TV goes off, music stops, the banter stops, I can’t even hear Jason’s breathing. Just Dana’s quiet  sobbing. It’s absolutely silent…. No beeping. Utter silence for maybe 20 seconds. A long time on a phone. First Dana, then Jason says, quickly, “Jeff’s gone.”

Homeless in 24 Hours or Less...

We are homeless. Some of us arrived in this state unexpectedly, while for others of us, it was a long, slow decline. Some of us have made choices abruptly or over an extended period of time, that now seem idiotic, but seemed logical at the time. Some of us are infirm medically, with serious physical illnesses. Some of those illnesses are congenital, some are brought on by bad life-style choices. Some of us are here because our mental faculties do not allow us to function in the "real" world. We may be afraid, subject to panic attacks, irrationality, or we may be bi-polar. We don't all sleep in the streets, or under overpasses and in bus stations. We don't cart all our worldly belongings around in shopping carts or back packs. We don't all shout at the "normal" passers-by, or cause other disruptions in public. We are not all dangerous, to ourselves or others. We are not all addicts or criminals. We are not all "playing the system." We are not all the other things that have been said about us, or to us in ignorance or with malicious intent by "normal" citizens...

We have feelings, dreams and hopes. We do care about what has happened to us and how we've come to be living in a shelter, group home, or rooming house. Some of us are dealing with terrifying health conditions, financial situations, domestic abuse. We are trying to recover from the situation of being homeless. Some of us are dealing with ostracism from family members, because we have been incarcerated. But we have paid our debts to society, and are ready and willing to work and prove ourselves contributing members of this world. We are badly hurt, but we are still trying to craft new lives for ourselves. We still have hope. Some of us are young; mid-twenties or early thirties. Some of us are middle-aged; fifties and sixties. I am pretty sure that my life's agenda did not include being homeless, legally blind, with cardio-vascular disease, emphysema and COPD at age 55. At least, I don't remember wishing for it, but... here I am.

This blog is intended to give the non-homeless a glimpse into the world I and my fellow homeless friends inhabit. This is not a how-to on how to survive homelessness or a directory of useful services in Tampa for the homeless. This is an attempt to describe our view of the world as "homeless" people. We plan to write stories, chronicle our experiences as we move through dealing with the Medical and Government establishments, on our journeys to... "non-homelessness?" Some of this blog will be amusing; some of it heartbreaking; kind of like "real" life. We will start with my story and get the boring out of the way first. We will be adding pictures and will have a few "departments" of other stuff. Sorry to be so non-specific. As we open this up to the public, I would encourage email from readers (if we ever garner any) to send their suggestions for additional material.

So, please read, and please, please feel free to email with comments, criticisms and suggestions. Just please, no hate mail.

-- HomelessViola
-- May 20, 2011