(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!
5 comments:
I have had this tab open on my computer since the day you posted and I read it. I guess I kept thinking I'd find the right words to say, or at least something not completely useless. However, it didn't happen. I wanted to at least let you know that I read your words, and am glad you have them here for others to read as well.
Mary, as always, you inspire me with your honesty, your empathy, and above all, your courage.Thank you for sharing so generously of yourself.
Take care. You're often in my thoughts. Hugs, D.
@andrea!
Thank you so much for your kind, kind words. Nothing you say is useless. The simple act of reaching out and just speaking is so meaningful. I understand what it is like to ponder on something that makes you think, or is so moving, but you feel you haven't the adequate words to use. That isn't important. The reaching out is and being there. There have been times, when the only thing that made me feel better, was just to say to someone, "Hi, good to hear from you!" That humanity is felt. Thank you so very much, from the bottom of my heart. It does get better and I still feel so badly about Robin Williams, but maybe, we're only supposed to have someone like that for a short time. I don't know. Thanks again, love! Mary
@Damyanti!
I am always so humbled to hear your words. You are an amazing woman of courage and strength and optimism, as well. I have tears of joy in my eyes writing this. I too, think of you often. I must tell you, that I haven't written much, because I was practicing my viola.
I'm playing in the Tampa Bay Symphony; I passed the audition and was invited to join on the spot! I had to play "Beethoven's 5th Symphony" which I took as a sign, as he is my muse! So, I'm tickled to death! I'm feeling wonderful, but with people like you, how could I not. We don't do these things by ourselves. I get so much inspiration from you, Damyanti! I know of your struggles, too. You are a part of my life and I'm just so happy we met. I'm going to be writing more now, too, that the audition is over; practice and rehearsals are going amazingly well!
With so much love and joy, thank you, thank you, thank you! Love, Mary
Thank you for sharring
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