Dark thoughts, things no one talks about

Been thinking the last few days of how this blog has changed my life but yet the demons of my mental illness still play their cards. I have not really thought of ending my life today, until now because the physical pain I am experiencing is driving the voices mad. I forgot to take my medication this morning. I was excited in seeing a close friend and just forgot. The price you pay for sanity is a little pink pill. The voices have created this delusion that if I cut my leg open, I will be free from pain. I cannot help but see their point in this line of thinking. I have done everything to try and sooth my pain but cut. Maybe the release of endorphins is what I need to get over the pain but part of me knows I will not feel the release because my leg is numb. The last time I tried cutting which was a few years ago it was a god awful sound of cardbord being cut that I never want to experience again. Who would have thought that being numb had its vantage points. But that is what nerve damage does to you. It numbs you, making you jaded of the things around you. And then when the psychosis starts you begin to wonder what is truth and what is fantasy. I’m in a difficult spot because although I want to cut, I know the consequences of doing so. The chance of infection is greater because of lack of feeling or that I will feel the pain, just not right away like when I stub my toe on my left foot. Funny I remember when I was a kid I thought my left side was the “evil” side of me and had to be removed because my right side was the “superior” one and would defeat all. Yes I was psychotic back then but I always kept it hidden.
See no one wants to know that you are crazy, like really mentally ill and depressed. They say things like cheer up or things could be worse. How can things be worse if you are already thinking of ending your life and you are hearing voices cheering you on, almost daring you to go through with it every day??? Yes, things could be worse. Life as a vegetable or state commitment to a psych hospital would be a  terrible consequence of telling someone that they are NOT telling someone they are hurting. Every time I hear people tell a depressed person to cheer up it makes me so angry because they are so ignorant. I want to shout at that for being dumbasses because it only created guilt in the depressed person that is just trying to survive the day without incident.
But throw in being psychotic and depressed, you have a different ballgame. Voices are constantly criticizing everything you do. You don’t tell anyone because I’ve learned that only the voices care. The voices are with you 24/7 and they know you better than the person that is saying cheer up. That person then becomes the enemy, the object of paranoia where the voices scream that he or she is going to kill you. To beware of what he or she is saying and doing because now they are after you and are going to kill you. This is what I deal with on a constant basis.
So the next time a friend tells you they are down, don’t tell them to cheer up. Find out what is making them sad because if it is psychosis, you might end up being the bad guy…

knackered, short story about Cauda Equina Syndrome

This is a Copyrighted chapter in the book Midnight Demon: My Suicidal Career with Mental Illness and Cauda Equina Syndrome. All Rights Reserved 2014. Collerone, G

Cauda Equina Syndrome: A complicated syndrome that often brings more questions than answers, more despair than hope. Questions like when will I have my old body back? Will my back/legs/feet ever be normal like they were before my injury? Will my bowels and bladder ever be normal and I won’t have to constantly think about the last time I went to the bathroom. These questions are always, if not in the forefront, are always in the back of the mind of those that suffer from Cauda Equina syndrome (CES as those of us call it). It is a neurological condition that occurs when the cauda equina (horse’s tail) nerves are compressed somehow due to a trauma injuries such as a disc herniation, fragments of the vertebrae, a spinal tumor, or some other injury that compresses the nerve, such as a surgery clamp. The cauda equina nerves ends around the L2 level where the spinal cord ends. The causes of this syndrome are many and as we have 5-6 levels of lumbar vertebraes, the different levels of damage vary. The most consistent rule is that soon as symptoms of weakness, unbearable pain, and/or loss of feeling occur, surgery should happen within 24-48 hrs.
Do we recovery after this? Anything is possible. Some of us do, some are left with permanent injury because treatment did not happen or was delayed or it was simply too late to recover. Some have seen recovery after a few months, a few years, some times more than that. Some have gotten worse after surgery as surgery itself holds its own risk. One thing that has gotten to be the never ending questions is, how do I live like this? How do I live with the pain, the never ending nerve pain that no narcotic can touch? How can I live when I can’t feel myself having a bowel movement or feel myself urinate. How can live with these dysfunctions, always in the back of my mind knowing where my feet are cause if I get distracted or am too tired, I will trip over them.
It has been eleven years since my first injury. Almost six since my second. My first diagnosis happened at level L4/L5. My second was at L2/L3, higher and more disruptive. It caused me to be where I am today, disabled to a degree that is permanent, more permanent than my initial injury. I do not know if all people that suffer CES x 2 will have what I have. I just know that I hurt, that I can’t walk more than a few blocks without debilitating pain, that I have to take meds everyday to live my life with some functionality. Otherwise I will lose my mind and be on a psych ward never to be a functioning member of society again.
The past year has been hard to deal with. I finally realized that my initial injury never quite healed the way I thought I did and so left me wide open for injury when I was hit the second time. Now while I am awaiting accommodations from work, I am doing what I do best. Writing my life story so it can be used as a voice.
By being a voice I can tell people who have been suffering with this condition that they are not alone with this. They have support in their pain and despair. We all have been through the learning to walk again, the painful spasms, the night time burning and shock pains that keep us up at night. The nights of lost sleep from the constant worry of being in pain and seeing endless doctors to find no relief or some relief. My voice can help answer the questions that arrive at each stage of recovery and when there seems like there is no recovery in sight.
It is an always constant reminder that you are not “normal” anymore. You have your good and bad days but a good day usually consists of making it to the bathroom on time or having some pain relief, even if it is for a few hours. A good day might be the day where you just collapse in exhaustion and sleep the day away because you were up all night in horrific nerve pain that just wouldn’t quit no matter how many pills you popped before bedtime. I still have not been able to find the right time of taking my doses. Though it has been a few weeks since the 2-4 am pain cycle, that doesn’t mean that it won’t be back. I think most of the time I have not been feeling too much pain is because I have been out of work the last month or so. Pain has become less but if I happen to walk too much or stand too long, I pay for it at night.
Most of the time, people think that you are fine because you don’t have anything physical wrong with you. I find that to be true because other than my foot swelling up, no one would know that my leg is hurting me so bad I can’t walk far or stand for more than 20 minutes. They might see the AFO (ankle foot orthotic) but that is what helps keep my foot aligned. So far I have not been questioned on this by anyone, but then this will be the first summer I will be wearing it. I got it in early November because I do not walk correctly due to the weakness in my foot. Instead of walking heel to toe, up/down, my left foot goes heel and swerves to go back to the toes. It has pulled my muscles and tendons so badly that when they flair up, I am in such agony, that all I can think about is killing myself. And this pain was 24/7. It drove me nuts because there was nothing I could do for it, nor was anything I was taking calming it down. I was on anti-inflammatories, narcotic pain meds, neuropathic pain meds, and still I was in bone crushing pain. All the tests, MRI and x-rays said things were normal. But if I was so damn normal, why was in so much pain??
Then there is the bouncing game where you go from one specialist to another hoping to get a new treatment, new diagnosis or just plain answers but all they can do is give you no answers and refer you to yet another specialist. My neurologist is good for this. She has sent me to a physiatrist, an orthopedic, and a physical therapist which all said they have no idea what is wrong with my foot. They have no idea what is causing the pain, be it from my back or from my foot (a mechanical problem as it turned out to be).
I have come to the conclusion that despite my many attempts to find the right doctor to see for my physical pain, there isn’t one out there. My last appointment this week was the last new doc I will see in a while. I am tired of being put through the tests and the endless questions just to be told maybe this might help, maybe not but go through it anyway. Seeing as I don’t have insurance at the moment, I say the hell with it. I cannot fathom going through something that might or might not help for six weeks and then be told, well at least we tried. Nowhere in the literature did I sign up for that. AND this is a NEW form of therapy so it might really not work at all. Not everyone is the same when it comes to pain. I don’t even fit the typical symptoms of what my neurologist diagnosed me with (complex regional pain syndrome) so how am I supposed to have confidence for six weeks, oh and did I mention this is a “drug free” program. I am supposedly weaned off my pain meds. SCREW that. I can’t function as it is without them. I can’t take a shower or go down the stairs or walk unless I take them. Living with this, Cauda Equina Syndrome, post (CESp) is life altering. Throw in mental illness and you got a time bomb of suicidality you don’t even want to think about. Most of my midnight demons comes from the pain I feel at 2 am in the morning. No doctor sees a patient at 2 am unless you are in the emergency room so of course my level isn’t astronomical at 11:40 am when I see a doctor or my psychiatrist. All I can do is shoot off an email at 2 am and tell them I am hurting. Sometimes I get a response, sometimes I don’t.
I’m done with seeing new doctors. As long as my PCP provides me with pain relief that is all I care about right now because otherwise I will end up 6 feet under. I can barely stand when I get up in the morning and no one understands. I don’t understand how the medical profession can know so much science and technology yet know so little about how to treat pain. I’m just getting fed up. Fed up and tired that no one listens and cares that someone already with a depressive condition is being made to suffer because of the “ills” of opioid therapy. Granted there are people out there who have addictions but these people can be weeded out if the physician just takes a little more effort in listening than prescribing to get rid of the patient. I still long for the day when I can page a doctor at 2 am and tell them I hurting because I really think then they will understand that I am not just some nut job but a person who is truly in pain and suffering a great deal but that day will never come. I will always be the one to suffer and as long as I do, whether it be physical or mental, I will have suicidal thoughts. I know that one day I will take my life by my own hand. I think at this point I am just too tired to even do that. Yes, TOO TIRED, EXHAUSTED to take my life, to end the pain and suffering caused by the damage of tiny disc fragments that compressed my spinal nerves for 5 long days. That was all it took to wreck my life forever. I often wonder if I would have finished my degree by now had CES not enter my life for the second time. I believe that this second occurrence is what truly disabled me, physically and mentally. I have more damage than I had before because a tiny fragment was left on my nerves for 4 days after my surgery to help me when I was losing control of my bladder. That problem was solved but then because of this tiny fragment, I was left with paralysis of my left leg, the leg that is now the vain of my existence. No one knows of this cauda equina syndrome, yet no one has suffered from it twice and been “okay”. I can still walk but I am tortured by it every day. Every day my ankle refuses to flex when I wake up and now it seems I have to take pain meds just to get out of bed and down the stairs to use the bathroom. That is if I don’t have to go urgently, then it’s screw the pains meds and go one step at a time down the stairs. This is what my life has become. Not one doctor in the entire city of Boston wants to help me. Mentally I can’t really complain. I have the best psychiatrist I could ever ask for. But medically, I do not have anyone I can truly trust. People just take it for granted that after surgery they will be ok. But no doctor deals with the aftermath of traumatizing surgery and the pain that comes with it. I am sure if I go to my surgeon today he will either want to do another one or refer me to a “pain doctor” for an injection but injections in the spine have not been shown to be useful. They might work in 50% of the patients but not all and some may even be harmed by this practice. I call it a practice of negligence.

This is a Copyrighted chapter in the book Midnight Demon: My Suicidal Career with Mental Illness and Cauda Equina Syndrome. All Rights Reserved 2014. Collerone, G

When jupiter aligns with the crescent moon

this has been a phrase the voices have been saying for the past 3 weeks. I feel like i am going mental and probably should be hospitalized but I am too afriad to. I am afriad that the idiot staff won’t allow me to have my pain meds and worse, won’t let me take my meds the way that I take them at home, which is usually the case.  These idiosyncracies are what keeps me up. Every one thinks that I am normal. I put up a great facade that no one sees through. Most people I know would never guess I hear voices all the times, 24/7, a constant stream of sometimes nothingness and at other times confusion as when they start talking all together or at each other, it is hard to follow thier conversations and where it is going. I’m have been under surveillence the past three weeks, constantly watching over my back and my surrounding all the while listening to a cacophony of critical voices that tell me who is watching and who to look out for, who is staring at me or at other times, questioning the way I do things, what I am wearing, why I am going a certain route and why I am not going another. Yea, people would love to know this about me but its better left unsaid as it is too confusing to make sense. sometimes I feel that even when I talk, the outside world just doesn’t understand, that what I am saying is too complex. The voices understand, they know my language, thoughts, movements but the past three and a half weeks now, things are different. they have become more commanding in nature and normally I would be scared but I am not. Usually I would be in the hospital by now but I am not. Almost to defy the world. Funny how my psychiatrist noted that she wanted me in the hospital yet has not done so…but she doesn’t know my plan or the plan that the voices have crafted. Jupter has aligned with the crescent moon and I shall act soon…

Therapy and Therapists (psychological)

I have been in therapy since I was fifteen. I entered when I had a breakdown over family issues and cut my wrist. By the time I was twenty-five, I have had ten therapists. Number ten is my current one.
Over the course of psychotherapy, I have seen every discipline in the mental health field; licensed social workers, licensed therapists with Masters degree, psychologists, and psychiatrists. The first was a school therapist and moved on after the school year ended. My second therapist got married and then moved out of state. My third got laid off. I saw two psychiatry residents after her, one had her residency end. The second MD was not a good match for me. I just could not see him because after telling him I was going to overdose and get a hotel room, he asked me if I was suicidal. DUH is an understatement!! The next therapist I saw was a social worker at my place of employment. She was ok but after ten months. One day I got into a fight with my sister and she wanted to know more of my sister’s social life than the anger I was feeling. I’m sorry but I thought this was about me and not my sister? I just decided she was useless and told her she was fired. She responded saying she wasn’t going to get a referral from her for another therapist and I told her, I didn’t need one. I’d find my own. There are other therapists out there. I then called the local mental health center and two months later I had therapist number eight. I really like this one. She was the first to introduce me to DBT (dialectal behavior therapy). She thought traditional therapy was not going to work for me and this would. After the first group session, it was a crock of shit. No disrespect to the creator of this therapy, Dr. Marsha Linehan, but come on…I had to write down every time I thought about hurting myself and at the end of the day it was over 100 times. I felt worse than better for realizing this.
I was part of the lower class system. I was also part of the state’s mental health department’s care because I was frequently in and out of the hospital because of my mood swings, psychosis, or suicidality. After ten years of this and once I found a job that had a stable insurance, my therapist of two years was leaving the local mental health clinic she had worked for the past fifteen years. I was devastated, again. She did not disclose her reasons to me, not did I ask (if I did, I do not remember her answer). I got really mad at the system. I really didn’t want to find another therapist as losing this relationship was so painful as we were in the midst of real work and now it was ending.
I decided to go private after this experience. My yellow pages was my resource book. There were a few things I learned over this process of therapy. Not everyone is suited to be your therapist. You need someone to laugh with, cry with, share intimate things with yet also need someone to be there for you. My search for my current therapist was more like me interviewing the therapist than the therapist interviewing me. I was not going to see someone who did not answer my questions or answered my question with a question. I needed someone to collaborate with me on the treatment plans, not follow some “one treatment fits all” scenario. Each person is different and so is the therapist. What works for one might not work for another.
One thing that has been the glue to most of my therapeutic relationships is the alliance and collaboration between myself and the therapist. We work together for a common goal, usually trying to save my life, or at least make it a little bit better to live it. Let me be clear on this, this is the MOST essential piece not only in a therapeutic setting but also personal relationships. There can be no hierarchy when dealing with a suicidal person. The therapist cannot take the “I know best” routine with a suicidal client. No one knows best except the patient. The patient is the one that needs to have a say over treatment. Being “thrown” in the hospital every time suicidal thoughts come up is a waste of time for both people involved and it only angers the client more than you can imagine. Just think, you are the one seeking help to figure out why you are suicidal and the moment you mention it, you are in a locked unit for 3-7 days, watched like a hawk and then when you get out of the “safe place” , the next session might not happen for several reasons. One, the client is too pissed off to resume and decides to go on their own. Two, the client, once released, does indeed go through with their plans as the ultimate end all plan. Three, the therapist terminates or decides that another therapist might be better suited for the client. Most therapists do not have training in suicidal crisis and suicide scares them more than the clients they are treating. Since the beginning of 2012, I have been trying to find a therapist that is within my 5 mile radius because I do not have a car and rely on public transportation to get me to where I need to go. Soon as the prospective therapists hears that my last hospitalization, which was involuntary, it’s pretty much “have a nice day, I don’t treat really ‘sick’ people”, least that is my interpretation of it.
In 2005, I suffered another severe major depressive episode. My psychache, as Dr. Shneidman, the father of suicidology would call it, had become so severe, I had had enough and decided to end my life in November. One of the greatest books on suicide is by Paul Quninnett, Suicide: the forever decision. I learned from that book that somehow suicide was not to be done in haste. You should give yourself some time and planning. And one of Dr. Shniedman’s famous line is “you should not kill yourself while suicidal”. This is tricky as I am sure most therapists reading this right now are thinking, that is terrible and there will be no coming back when this time has come and the planning is in great detail. True. This can be the case, but is also allows something called ambivalence to take over. When I made my plans for November, it gave me time to think it through, whether I was to go through with this or not; the choice was mine. No one else could make that decision for me and maybe by that time rolled around, I didn’t feel like taking my life, maybe I no longer would feel that way and the day would pass without incident, like, fortunately, many times before. On this occasion, I was hell bent on going through with my planning. Therapy had become useless. I no longer wanted to be in therapy, I was just going to “please” my therapist and made it look like I was fine if I did go through with this. By mid-October, I could hardly wait the next few weeks. My mood was becoming more bleak, baseball season was over as my beloved Sox had a horrible year with injuries, the psychache was so intense sometimes I couldn’t breathe. But I still carried on like there was nothing wrong with me. I was being cheerful to the outside world. My therapist and I had this game we played to get things going when I didn’t know what to talk about and I sure as hell was not going to tell her my plans so she could stop me. This pain was going to end and no one was going to stop me. The game was twenty questions. She could ask me anything and I had to answer truthfully and honestly. This is because only under direct questions will I open up and I think most patients in my shoes would do the same. I’d rather talk about the weather in therapy than what was really bothering me. This questions game was to delve into that. Except this time, it back fired horribly on me. Twenty minutes into session, I was bored and decided to play the game to pass time. At this point I was seeing my therapist twice a week and though I could cancel, I found it hard to do it. Ambivalence would get me to call and reschedule. My therapist asked, “what was really, really, really, really going on”? I was floored and remembered laughing as I could not believe she asked the one question I was not expecting. It took me a few minutes to collect myself and then the dilemma started. Should I tell her what I was planning to do? I was so damn torn. I wanted to end my life but I also did not want to hurt this person that (at the time) I had been seeing for the past four years. I waited a day then called and scheduled an additional session as I could not wait till out next appointed time and told her everything I was planning on going through. Her response shocked me. She started crying. Never had a therapist cry in front of me. It brought the realness of the situation to light. I obviously meant something to her and though I don’t recommend every therapist to cry when their client tells then they are suicidal, they should at least feel something.
Some people will say that people who commit suicide are selfish. Seeing as my father drilled into me that I was selfish, I decided when I was about eleven to just give myself to others and their needs, even if that meant ignoring my own. When my therapist started crying, I grew ambivalent about my decision to end my life and put the brakes on so to speak. We worked through not going ahead of my plan and I was lost for months afterwards because I felt defeated. Again, I had broken a promise to myself that I would end my suffering.
I think it was a year later that I finally discovered the real reason why I was so suicidal. I was thirty years old and all my life I thought that one day I would grow into being a man. I realized during this time that this would not happen. I would still have female parts, especially breast which annoyed me to no end. A few years later, I realized that periods, being transgender, and suicidal thinking do not mix. I had not said anything to my therapist about these things as I could not put words yet outside my head. I could not face it if she rejected me for feeling this way and neither could I face the possibility that she would say that I am a woman and always will be so get those thoughts out of my head like my family has been saying since I was a kid. I could not possibly deal with it and so became again intensely suicidal. By this time I had found the works of Dr, David Jobes. With his SSF (Suicide Status Forms), we pieced together the reasons why I was suicidal and for the first time in my life while in therapy, my therapist sat beside me while I was crying about not being the real me and hugged me. I was so overcome with emotion, both at her tenderness and my feelings of despising myself, that I just bawled my eyes out most of the session while she sat beside me and let me cry. She told me that we were going to get through this. And those words meant the world to me.
It is this type of work that makes therapists golden. To have a therapist tell you that you are going to get through something very painful, means a lot to someone suffering so much. I know that most therapists do not have physical contact with clients because of boundary rules. I am not saying that all therapists need to be touchy feely to be a good therapist. I am saying that therapists with suicidal clients need to be open minded and try to work through the suffering rather than just say that if the feelings get worse and you can’t keep yourself safe, the ONLY option is hospitalization. Therapists need to work through the pain, despair, and hopelessness to help the client work through their feelings. If they don’t, and the feelings to not get talked about because of the fear of always going in the hospital, then nothing will change and the client will either end up committing suicide or end therapy thinking it is too hopeless to carry on. To build this alliance can be tremendous and life saving.
The things needed to find a therapist are difficult to explain. Everyone is different and so too are therapists. Not every therapist is the same. Each may come from a different discipline such as psychodynamic, cognitive, behavioral, and eclectic. Eclectic therapists means they do not have a specific discipline. They run their practice more on the patient’s need and use each of the different disciplines in a different way. For example, they may use cognitive-behavioral therapy (CBT) for people who are trying to modify their behavior to quit smoking or they might use a combination of psychodynamic and CBT for those with trauma issues.
For those entering therapy for the first time, it can be scary and frightening. Asking for help is not an easy thing and when you do, it can feel really vulnerable. Opening up to a new person about problems that you are having can be challenging. I know every time I walking in the door of my therapist office, even after years of knowing her, I felt a little nervous. No reason why anyone going through the door for the first time wouldn’t. The main thing to remember is that you have the control. If this person doesn’t work out, then there are others out there that might. The important thing to remember is not to give up after the first try or the third. Eventually you will find someone that you can connect with and they to connect with you. That is what makes an alliance of therapy.

Why I find myself suicidal

I recently was asked this when I was in the hospital on a couple of occasions. A mental health worker just could not understand why I would want to take my life. So many people think life is precious and taking your life is just not right. I won’t go into the religious aspect because I lost my faith years ago and more so when the Catholic church was harboring pedophiles and did nothing about it for years…But I digress…

Most of the time I do not know why I want to end my life, I just feel that life is not worth living that I feel so dead inside that continuing to live just does not make sense. Sometimes I feel so dead that I just wish my autonomic nervous system would realize this and stop working, that my heart and lungs would cease to move as they should. But that isn’t how it works.

I have not attempted suicide in quite a few years. Maybe it is because when I did, I felt panic that dying was going to happen and it changed me in a subtle way in wanting to live, if for that moment.  But since then I have changed methods. Now instead of overdosing on drugs, I plan on putting a rope around my neck or a plastic bag over my head. This is instant death that you can’t go back from without some sort of intervention because without oxygen, you will die.

Another reason I think about ending my life is because of pain.  During my recent hospital stay I was frequently asked what my pain level was every time I had to take my pain medication. Yet when I was given my antidepressant, I was not asked about the level my depression was. I brought this up to my case worker and she said “that is what we are talking about, to assess your pain” but it is not the same as when you are given meds. Shouldn’t the level of depression be assessed when given the meds to know its effectiveness? I know that these antidepressants take time to work, several weeks in fact, but shouldn’t a baseline be used to gauge the effectiveness after a week to see if maybe the drug needs to be increased? I was at this hospital for two weeks and never was my psychological pain assessed. My depression and feelings were but not my pain. Interesting that my case worker thought there was no distinction of pain versus feelings. I guess in her mind, they are one and the same but to me they are not. When you have feelings of killing yourself, the feelings are more than just the typical run of the mill depression that everyone goes through at some point in their life.  When you are CHRONICALLY suicidal, that is, when you are thinking of taking your life every day for months, your feelings have to be so deep and painful that ordinary measures just don’t cut it.  When you have mental pain, it is like you cannot breath with the weight of an invisible 100 lb weight on your chest. It literally hurts to breath and taking a deep breath is the only way to get the lungs moving, least that is how it is with me. Nothing helps this pain and even though I take a narcotic for my physical pain, I do not get relief for the psychological pain. This pain can be defined as the melding of despair, anguish, hopelessness, helplessness, guilt, shame, loneliness, and depression all rolled tightly together in the confines of the mind that knocks out any kind of joy and pleasure life might bring. This pain, this ache is what the father of suicidology, Dr. Edwin Shneidman (RIP old man) called psychache and believed it was the underlying cause of all, if not most, suicides. Stop the psychache, stop the suicide.

This psychache causes the constriction of the mind into believing that there is just one way out of this hell, suicide. As this pain cannot be relieved by any drug known to man, it is this pain that drives one to think endlessly about suicide. It is this never ending all consuming pain that makes life not worth living. This is what drives the suicidal mind. Ending this pain is what suicide is all about.  It is a deep desire to end this suffering of living day in and day out with mind numbing mental pain. No doctor can treat it. And knowing this makes the hopelessness drive on fueling the pain even more so…