I have officially been living with depression for 17 years. I have had emotional problems and was isolating from others since age 5, when my parents sent me to a psych research facility for the intellectually challenged. (I am not and have never been retarded! I got sent there anyway. It has scarred me ever since, especially since my parents were regularly screaming emotional abuse at me over this and other things.)
There is a complicating factor here, several of them. I have cerebral palsy and am confined to a wheelchair. More than once, I have been told I am an inspiration to people. More than once, I have had people feel sorry for me merely by their looking at me. I have had people, including so-called friends, say offensive things to me on a regular basis. Many of them think I am totally incapable of doing anything.
One woman told me: "At least you, unlike walking people with depression, have a valid reason for suicide." (I found that comment quite offensive.)
Yesterday, someone from my church asked me out for coffee. She had depression too. Last summer, my parents asked me to give them Power of Attorney for me, then promptly tried to use it to put me in a nursing home for the rest of my life. At one point, they even tried to declare me incompetant, so they could put me away against my wishes. (I am 38 years old.) They told doctors, my friends, my helpers, just about anyone who would listen, that I needed to be put away for my own good. They never got around to telling me what they were planning.
They remarked to a case manager that "It's a lot easier to get our daughter to do things when she's in a lot of pain." I have had chronic pain for five years and when to my parents for help because the system had and is basically failing me. They insisted on showing up to sign up the Power of Attorney papers during a time when my pain was severe and I tried to get them to postpone the signing. I was in too much pain to even read what I was signing.
The case manager was alarmed by my parents' comments and phoned me. That was when their little plan started to unravel, because my friends and caregivers at least had the decency to tell me what was being done to me. I stripped my parents of Power of Attorney orally. My father phoned me and tried to pressure me into co-operating and when I refused, my parents told me they wanted nothing more to do with me for turning them away.
I have yet to see a lawyer to end the Power of Attorney officially. The woman I was having coffee with told me that my parents were just trying to be nice to me by putting me away and that nursing homes were WONDERFUL PLACES TO LIVE. When I tried to enlighten her on what my parents were like, she told me to shut up and that she would rather I sit quietly and let people admire my courage. Yes, you read that correctly.
I have been in anguish for five years precisely because I am bearing my physical and emotional pain in silence. I have been through three psychiatrists in five years because I have had horrible psychiatrists who did not know how to care for a patient who is handicapped and in severe pain. My last appointment with my current psychiatrist was 15 minutes long and that's counting the time I spent in the elevator. The most useful thing he did during that appointment was help me get a glass of water.
Hey!
I think sometimes the universe sends us to the place where we need to be. I am so glad you have found us here. As I was reading your story...I was thinking a mile a minute or other friends I have and resources which can potentially be of help.
I cannot imagine what all you have been through. You have been treated so horribly and with such disrespect. I think you have every right to feel enraged. Please do not hold this anger in and harm yourself with it. These other people are wrong...wrong in what they have said to you and wrong to violate your rights.
Please remain here...I am going to call upon all my friends and resources out there so that you have some on-line supports.
In the meantime...do you have any friends or family who can help you right now?
Listen...I do not want you hurting yourself. You stay right here and come back to us.
If things get so bad that you cannot stand it any longer...I want you to call one of these hotlines:
1-800-273-TALK (8255)
1800-784-2433
1800-799-4889
I have called them myself several times...the people do help.
I will be back shortly...with other people and supports. You hang in there!
I'm from Canada, but thanks for looking for resources. I feel that the Americans are further ahead on disabled rights than we Canucks.
My family lives 8 hours away by car. My parents were the ones who tried to have me declared incompetant and institutionalized. They rushed down to where I was hospitalized for depression last spring and told me not to go back to my apartment.
They were very nice to me before the Power of Attorney was signed. Too nice. I was their verbal punching bag for the first 22 years of my life. They harboured bitterness and anger towards me, for that 1 1/2 years in the psych hospital, for a botched operation and much more. I was screamed at for crying too much, for being immature. In the summer of 1992, I had a right hip surgically removed and I was screamed at when the surgery did not provide instant and total pain relief. In fact, it clearly made matters worse. This while a nurse coming in to help care for me was telling me how well I was doing, considering I was now minus a hip joint. So I asked her to tell my father that. She did and then Dad yelled at me again when she was gone...for revealing a "private family matter".
Among the worst things about that first botched operation, aside from waking up from the surgery shrieking in agony (age 12) and permanent nerve damage, was the anger I felt my parents directing at me. The pain of that is with me still. I wasn't going to take the fall for a second botched operation, especially for a surgery I never wanted in the first place, so I "decided" to move out.
My father tried to stop me by informing me that if I moved out: "All my friends would abandon you like everyone else has."
I've been a hermit for much of my life because I figured other people would treat me just like my parents had or worse. The only time I was safe from the yelling was when I was at summer camp, in hospital for surgery, or when my parents left me with a baby sitter. It's hell to know that you actually look forward to surgery because then your parents won't be around to yell. I was hospitalized hundreds of miles away. They called once a week and visited when there was major surgery or if something went wrong. And the first sound I heard when I got home was my dad yelling at a sibling.
At age 8, I dreaded my father coming home from work, right around the same time I tried to run away from home. I tried to tunnel through the wall of my bedroom by using a toy to chip a hole in the plaster wall. In those days, I was going to a special school and they had a tendancy to overreact. Drawing a tank in my writing book basically got me deprived of 1960's Batman for several years.
Family counselling sessions consisted of my parents pointing a finger at me and screaming about what a hardship I was. I'd go to private counselling sessions and return home for more yelling. My father had me pedalling 15 km a day in 45 minutes on a stationary bike, with my legs. I was and am confined to a wheelchair. My bones were so fragile I had a broken leg every six months.
I never questioned what my parents did until that hip removal. Hip dislocation is a side effect of cerebral palsy and I was too young for a replacement. I hid the pain from my parents for a year before my father found out, because I feared the surgery would go wrong.
Last summer, my parents were saying wonderful things to me. My mother went on and on about how families stick together through thick and thin, this while making plans to place me in a nursing home and commenting to the case manager about how it was easier to deal with me while I was in pain. I asked my team to stop co-operating with my parents for that comment, which no one had any reason to make up. It was the case manager who told me what my rights were.
My father phoned me to try and pressure me back into line. When I refused, my mother sent me a nasty e-mail.
Synopsis of letter
" I am very upset with the decision you made.You once listened to a so-called 'friend' and left us years ago.
You had the right to do what you did, but you have not figured out that families are there for one another through thick and thin. Clearly you are not interested in having a family. Tomorrow morning, we will make arrangements with the power company and you will be responsible for your bills once again. You are now on your own. I wish you well but you will not turn us away a third time."
They were helping me with a $1200 debt and that ended when I refused to co-operate with them. The next day, my psychiatrist told me what my parents were trying to do to me. He thought it was funny.
I was withdrawn even from family for most of my life because of the yelling. That withdrawal was the real reason for my 18 months in the hospital. My mother lied to me about that reason for years. I've had no friends until recently and I am shocked when people treat me well. My siblings were never even told why I was in a wheelchair. My sister had to go digging thru a desk in secret to find that out. You would also be hard pressed to find a photo with me in a wheelchair and there were only a handful of photos of me after age 12 when confinement to my wheelchair became permanent.
My family has lived in stigma and fear for years. It's taken me years to figured out just how messed up my parents are. Depression runs rampant in our family. I feel responsible. Communication is not one of our strong points. My siblings at best don't know what is going on and sometimes even taunted me when I was being yelled at. My hobbies and interests were systemically attacked and my father treated me like he felt I was an idiot. And they wondered why I never made progress in therapy.
My siblings are all living close to my parents.
It wasn't like me to consider suicide an option. I changed churches because of their stand on euthanasia, in favor of one that was pro-life. I had been showing symptoms of depression for much of my life. But when my chronic pain was diagnosed, the depression exploded. I've had to fight the urge to make suicidal gestures and feel like my life is over.
The business over my "family" didn't help. Ironically, my parents pushed me to fight for disability rights with my "disabled friends". Had they been concerned about my well-being, my parents would have told me to stay far away from the people who wanted to use my pain to manipulate me.
My mother works with terminal cancer patients. Their "help to me" over the past 16 years was to drive down twice a year with groceries, put in or take out a second hand air conditioner and go home. No letters, no phone calls....my stress and fear skyrocketed whenever my parents came down here...and from this, they pleaded "burnout" with MY DOCTORS, MY PSYCHIATRISTS, MY FRIENDS. My mom is still working so she can "maintain her dog in the way it's used to."
It's been like that all my life...my parents point fingers at me, scream at specialists to jump and the specialists would comply. I am now an emotional quadriplegic and a physical wreck of a human being. I invited my first friend over only this year....I wasn't allowed that growing up.
I have lived with low self-esteem and fear of other humans for my entire life. Psychiatry hasn't even come close to addressing the real issues that are driving my depression. Psychiatrists have told me "You're depressed because you can't do things other able-bodied intelligent people do." I was in too much shock to put these people in their place and I was treated like dirt in the ER during my last psychiatric emergency.
I know there is something deeply wrong with my suicidal feelings, not morally wrong, just something deeply wrong in my brain. My chronic pain has obviously changed my brain workings somehow. I now have high prolactin levels, heart problems and weekly migraines. I can only find temporary peace at a nearby church. It sickens me to come home, even to my two cats. The priest who knows me best and who I trusted is changing parishes. I will never see him again...that's not the reason for thinking of death but it is a serious blow. He knew how hard it was for me to reach out, talk about my issues and make friends. He also knew my heart had been broken more than once.
Before my parents rushed to the mental hospital, I had nightmares three nights in a row about their taking away my apartment and putting me in a nursing home...and that's what they tried to do.
I am scared to take my own life, but those thoughts keep coming, even when they are unwanted. They cause uncalculated pain and take away what little quality of life I now have. I certainly wouldn't grieve if a terminal illness were to strike me down...that is what the past five years have done to me...and what my parents tried to do was just the last straw.
I have also been pouring massive amounts of sweat from my body for no reason, adding to my misery. I can only take things one day at a time, but I am in a world of hurt and it just keeps getting worse.
I keep trying to understand why I could be disowned for not going into a dismal human warehouse and forfeit my cats, my books and my rights. I do have some one coming in twice a day, but there is friction with some of the staff.
I am so sorry to hear about all that you have been through - I feel unqualified to respond because I'd hate to say anything that would make you feel worse especially since I understand that once people have gotten under your skin even the smallest wrong statement can hurt so bad it might just be akin to having to deal with cerebal palsy (I hope I'm not overdramatising it or belittling your illness).
I do feel I can possibly explain the sudden sweating. It sounds to me like your body is having panic attacks. Because it cannot give you more pain (what you already go through sounds pretty unbearable) and I presume you've probably cried your fair share of tears, etc, it's getting you through sweat (or that is the new symptom that you are noticing). I have really bad panic attacks where my whole body shakes like I'm freezing but I'm boiling hot to the touch and sweat bucket loads whilst I cry insensently. And even between panic attacks I can sweat horrendous amounts whilst doing nothing to warrant such a physical response - nothing but be overwhelmingly stressed that is. I hope you manage to work on some of what is stressing you because then I believe that symptom will go away in time...
I'll reiterate what everyone has been saying: please do stay on here and keep writing (you are indeed a wonderful writer) and I hope you find some comfort in the fact that people do exist who aren't going to judge you or put you a 'category' because you're in a wheelchair or belittle what you are going through but simply want to be here to listen because you are a wonderful person who deserves so much better.
Hi Hamstergirl
I am glad you came back. Your story is one that reads like...a book. You are very articulate and outspoken. The name you call yourself...can you tell us more about that?
I hadn't known you are from Canada. If you need us to look up any resources for you please let us know.
What help can this community be for you? We are a bit powerless to do much on an internet site but to give you an opportunity to share your story and to provide you with emotional support.
What brought you to this site? How did you find us? And what support can we provide to you?
Please do keep writing and sharing. Let this be a place where you can feel safe to talk about what is going on in your life.
I took the name "hamstergirl" when the events listed below took place. I had never had a hamster, and took the name figuring it would make it impossible for my family to find out I was writing about my past.
The events took place before my depression became severe and before suicidal ideation became a regular part of my life. I am not suicidal because I've changed my mind on euthanasia. I have a biochemical disorder of the brain of which isolation, sadness and desires for death are just some of the symptoms. I take medication and nutritional supplements to help.
I knew things were really bad when I started wanted to act out with toy guns. The suicide rate for chronic pain and depression is quite high and I knew myself to be emotionally vulnerable to begin with.
Doug is the friend I write to every day if possible. He's been here to visit. He's working with mentally ill youths because of what I've told him about depression. There are a few times he's lost it, but he's still a great friend.
I have heard stories about suicidal ideation in chronic pain patients going on for years. Even if I have the goal of wanting to fight these feelings I still suffer from them and feelings of burnout. I have met many wonderful friends at Church and despite some of the hare-brained comments some of them have made, they are still good friends, some of them, anyway.
I am real tired of fighting this out though and I have had to add two more doctors to my file. I go for a brain scan tomorrow. I had a seizure a while back, my first, that or it was my heart acting up. (I have something called Wolfe-Parkinson-White)
I wish I never had to go to a hospital again, let alone live in a "home" surrounded by uniforms. I wouldn't last two weeks in a nursing home. It would be giving up whatever I had left that made my life bearable. I figure my being in severe pain gives me the right to choose where I want to live for the rest of my life.
I was prepared to move closer to my parents, because they wanted me closer to home. It would have been extremely painful to lose all my wonderful friends. But to add to that pain by forcing me into an institution. Since they are so fixed in their vision of me and where they feel I should be, there will never be reconcilliation. I care about my family, no matter what my parents think. I am frightened of my parents and for good reason and I wish they would wake up to that fact and think long and hard about what reason I might have had for ditching a comfortable middle-class existance to live below the poverty line
http://www.catholiceducation.org/articles/catholic stories/cs0379.htm