Loss and thoughts on life, death, suffering and potential (mom & L, please don’t read this…)

Breaking the Silence of Stigma: In Memory of Kaitlyn.

I read the above with mixed emotions.  Loss has come up a lot lately in various forms, and I struggle to make sense of it all…

I had been thinking of Talia Castellano a lot lately, and the news of her death hit me hard yesterday.  I did not know her personally, but I followed her instagram, and wished her strength in her battle with cancer.  But these last few weeks, as she did not post anything because she was so sick in the hospital, I began to think that I wished it was me. I wished that I could give this bright and shinning little girl the energy in my body that was tethering me to this life.  Surely she would make more of it than I ever could.  If I could take on whatever it was that was killing her, if I could switch my life-force with hers, I would have done it.  It was all for selfish reasons though.  Well, not totally, but pretty much so.  I think her impact on the world in her brief 13 years had been greater than my entire 34… She had known suffering and pain, but she would have done better with her life-lessons than I ever could.

Is it wrong of me to be jealous? Probably. Will I ever get over that jealousy? Maybe…

I read the above letter with similar jealousy.  Yes, there is empathy and that gut-reaction of wishing her life was spared and her pain erased so she could live the rest of it happily, but there was also recognition and acceptance of Kaitlyn’s decision to step out of her role and move on.  While I feel for her family and friends, I also greatly empathize with her hopelessness.  I know what it’s like to be so far down there is no longer a light.  I know the crushing weight of depression.  I know what it’s like to long for death because at least it would bring peace.

I also know the guilt for the sadness my death would bring.  I know what it’s like to lose someone you love way before you are ready (are you ever ready?).  I know that lives are shattered and people are shattered by the death of a loved one… but that brings me little comfort when my own thoughts are focused in on any escape.

This understanding puts me in a sticky ethical and philosophical spot when debating the merits of death and suicide.  Why is it ok for a cancer patient to be over-taken by their disease and pass away, but not a depressed patient?  Why can people with terminal physical ailments choose to sign a Do Not Resuscitate order, but not a person with PTSD?  How do we draw the line?  Yes, a person’s body may be so far gone that living is painful, but what about when a person’s mind is so far gone that they experience the same pain?  Why is it ok to send a terminally physically ill patient into hospice care, but not a terminally mentally ill patient?  Just because we can’t pinpoint the mechanisms of failure in mental illness does not mean that they are not there.  This is a morally slippery slope.  I’m pretty sure I will catch hell for writing this, but think about it.  Remove your stereotypes and prejudices for a moment… Yes, there can be treatment for mental illness, but it doesn’t always work. There are some cases that are just too far along, some pain that is just too great, and it is beyond our capacity as humans at this juncture to know how to fix it.  So why is there such a push to then strip away that person’s rights, confine them against their will, and treat them with every last ditch effort we can think of, even if they don’t wish for the treatment?  Why do we not do this to cancer patients?  Why do we not do this to physically ill people?  Because we give them the benefit of the doubt that they are “of sound mind” to make their own treatment decisions.  We accept that if they choose not to go through with a particular treatment for whatever reason, they know what they are talking about…

When I was in the hospital the last time up North, my attending psychiatrist attempted to convince me to try ECT.  Having quite a bit of training in mental health, I have a reasonable understanding of that particular “treatment”.  I know enough about it, and doctor’s lack of knowledge about it, to know that it is something I will NEVER subject myself to (much like I would never choose a lobotomy, no matter how bad I get).  So why was it then, despite my knowledge and rational thinking behind my decision, that Dr. Fucker decided I was wrong, incapable of making decisions for myself, and that this treatment must be forced upon me?  Why did it suddenly become my job to provide scientific refutes for the use of ECT in PTSD cases?  I had no access to the internet, a library, or any articles on the topic.  How was it that I was supposed to show him that his line of pressuring was wrong?  When I asked for scientific proof, or even just an article, on the benefits of ECT with addictions and PTSD, he told me it was not his responsibility to provide it?  Where was the rational thought behind the response “but you are going to kill yourself if you don’t do it!” And how is it rational that I need to access this information while in the hospital, though I have no actual resources available to me?  He simply told me to “figure it out”… I had told him there were other options I was willing to try.  I had told him of different treatment centers and therapies still available, I just had to find a place to access them.  He refused to listen, and we engaged in a week long battle of wills.  Thankfully, according to CT law, I needed to have 3 independent psychiatrists agree that I was incompetent to make my own decisions before he could bring me in front of a judge.  He did try though.  I was visited my his friends (fellow psychiatrists that worked with him) several times while waiting for the independent interviews.  I was bullied and made to cry.  I was threatened with sedatives that would render me incapacitated so I could no longer resist.  I was yelled at and cornered and they tried all sorts of messed-up logic to get me to agree.  I think they may have even called my family at one point, but I am not sure.  They would have said no as well in any case.  They respected my decision, and equally felt that ECT is scary and barbaric.  I also had a few allies on the unit; nurses and mental health professionals who agreed that I should not be forced into it if I did not want it.  That’s not to say that they did not have conversations with me about it, and try to tell me the benefits they saw come from it, but they did not harass me like Dr. Fucker did.  My case worker was awesome, she told him a few times (in my presence) that she thought ECT was wrong for my case.  She dug around until she found a treatment center willing to take me, and that she hoped would be of help. Also, the additional psychiatrists needed to assert that I was incompetent never were able to do so.  I had individual assessments with each of them, and was able to assert my (very valid) reasons for not wanting ECT.  I was also able to tell them how the procedure worked, and had a good understanding of the outcome.  I was told a few times by nurses and one doctor, that I seemed to have a better grasp on the whole thing than even most medical professionals… It totally saved me.  I’m glad I had the education iIdid, and learned the things I did in the past that helped me escape that fate… but I digress from my initial reason for telling you about my ECT trauma story… I had wanted to tell you because at one point I brought up to Dr. Fucker that a cancer patient would be allowed to refuse treatment, even if the doctors thought it would help, if they felt it was not something they wanted to go through.  So why could I not do the same?  Dr. Fucker’s answer: I would force them into it.  He must have forgotten that they only take away the rights of the mentally ill, and not those only struggling with physical illness… He would have no grounds to force a physically ill person into treatment, and could easily get sued or have his license revoked if he did something like that.

But with mental illness, it’s different.  We justify stripping individuals of their rights as human beings.  We take our own will and exert it upon them because “they don’t know any better” or they “are too ill to be able to make a rational decision”… What about then the times when the illness is in remission, but they make a rational decision about their lives?  Suddenly the illness is considered back, and you lose your rights again… Nowhere else would we stand for such oppression.  But it’s culturally acceptable to degrade and dehumanize a mentally ill individual.  It’s ok to treat them like animals and confine them and take away all their coping skills.  It’s ok to forcibly medicate them.  It’s ok to violate them.  It’s ok to demand unreasonable feats from them… because they don’t have the mental capacity (legally) to know what is best.  I’m beyond happy that we have come leaps and bounds in mental disability rights, but we don’t clump mental illness under those benefits.  If I made the decision to sign a DNR order while I was “mentally fit” and my depression, PTSD, anxiety is considered in remission, I can guarantee that it would not be enforced should I choose to try to take my life at any later point. The wishes of my family, friends, and of strangers would be granted more clout then my own, and I would be forced into emergency treatment… They may honor it if I were accidentally injured, but if it even remotely looked like a suicide attempt, I would be “saved” and carted off to a locked unit, where all my personal freedoms and dignity would be stripped from me while they force me to “get better”…

Have you ever been to a psych unit?  Have you ever experienced what it’s like to be a “patient” there?  While there are some that are better than others, most involve indecency the general public would cringe at.  Initially, you are made to strip bare (fun times for an assault survivor) and examined.  Strangers touch you and poke you and prod you.  They ask questions that they expect honest answers to, though they are things you have yet to admit to your own therapist, forget a stranger. Most places will put you on 1:1 when you first get there, or in the least, 5 minute checks.  1:1 may sound innocuous, but imagine having to do EVERYTHING within arms length of a stranger while they watch (I have huge anxiety about using the bathroom with anyone else around, or even knowing… they watch me as I try).  Every move is scrutinized, every action is analyzed… If you complain or look for space (I’m an introvert and need time to myself to feel comfortable), you are put on higher level of watch because you are clearly looking to hurt yourself.  You are told to spill your very private story to a host of strangers time and time again.  Everyone reacts differently, and many judge you (they are not supposed to, but they do anyway).  If you are not comfortable talking to someone, you are being defiant and resistant to treatment.  If you question your medications, refuse to take them, or ask for a change, you are labeled as a problem and resistant to treatment.  If you acknowledge the thoughts in your head that got you there in the first place, you are deemed incompetent to make your own decisions, and you are excluded from treatment decisions…  You are heavily sedated at the first sign of emotion, because they would rather hand you pills than deal with your crying.  If you refuse the pills and choose to cry, you are put on 1:1 again.  If you dare to lose your shit and scream, you are tackled, injected with medication, and tied to the floor in a “secure” room (never actually had that happen, but have seen it many times.  Even the first time was enough to know that I would NEVER want to be in that position)… All those movies where they show the horrific things that happen behind the doors of a psych unit, they really are mostly accurate… and in most units, things have not changed since the 40’s.

There are a few good ones though.  I’ll give them that.  There are a few places that try their best to keep you feeling human while they degrade you.  There are units that actually try to help you while you are there, but they are rare. (insurance restrictions and budget cuts see to that).  They try to hire people that are not in it only for the cash.  They make sure that you can get in contact with a therapeutic person at least once a day.  They try to be nice as they do the body checks and the physicals.  They attempt to respect you as you go through the triggered reactions to their intrusions… but if you happen to wind up there more than once, they give up on you, label you hopeless, and stop trying…  More and more I am finding that people who work on psych units are there for a short list of reasons, and caring does not make it’s way onto that list for most staff.  It’s either 1) they need money badly, 2) they are trying to get their foot in the door to advance to other positions elsewhere in the hospital, or 3) are on a serious power trip, because that is the only place it is tolerated and even expected.  Don’t get me wrong, I know it’s a high-stress, high-burnout job, but when you go into it for all the wrong reasons, you wind up burning out faster and harder.  You are supposed to be able to ask to do your laundry (you are expected to do your own), but when you ask, you are interrupting their solitaire game or their tv watching or their magazine reading, so you are denied and scolded for bothering them in the first place.  If you happen to be having a rough time and want to talk outside of the check-in times, the power-hungry ones will always turn you away with a scowl.  The nice ones will ask you to wait a minute if they truly are engaged in something else.  And heaven forbid you can’t sleep or need to talk in the middle of the night.  You are scolded and ordered to return to your room – they take lights out as seriously as prisons do, only you are not supposed to be a prisoner, you are supposed to be there for help…  I have to admit, I miss the hospitals in CT where more people cared… I met some monsters there, but I also met some really nice people who were at their jobs because they wanted to be there, not because they had to be there… down here it feels like everyone is only it it for the wrong reasons, and we are all just an inconvenience to their otherwise boring shift that they simply want to suffer through…

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2 responses to “Loss and thoughts on life, death, suffering and potential (mom & L, please don’t read this…)

  • gatito2

    Samantha, I am the mother that wrote the article about Kaitlyn that you mentioned earlier in this post. Please don’t fret though, you said nothing to insult me or my daughter and I certainly take no offense. On the contrary. My daughter took her life because in her note she said she had been sad all her life. She never defined the type of sadness. She also said she could not explain why she never sought help. She said she never told us to protect us from it. But I believe in my heart, that she didn’t tell anyone for many of the very reasons you put in your post. I also suffer from depression and she had to watch as I have been in hospitals for it a few times, changed medicines so many times because either they didn’t work, quit working, or made things so much worse. She watched as I changed psychiatrists so many times because they only give you 5 minutes at best. She watched me change counselors because I mostly got no benefit from it. It’s worth it I suppose, to finally get to a place where you reach some sense of normalcy and I had for the past year. All this while I continued working. I feel so guilty that maybe she saw all I went through and wanted NO part of it for herself. She was a perfectionist, she would never allow herself to fall prey to the stigma attached with mental health. She thought she could handle it I’m sure but it went too far and it finally overwhelmed her. My daughter went about her suicide like she did everything else, she planned it to a T like a project. She never did anything halfway and by gosh she killed herself the same way.

    You are so right. Once you tell someone you are suicidal, you lose all your rights because they feel you are not capablele of making rational decisions when one is suicidal, and they are right. When you are in this thinking, you are not thinking right that is why they take you over. It’s not a good thought, but it needs to be done. Believe me, I know from experience. But here I am still alive. It was hard work to get to where I got to feel normal again, but then my daughter goes against anything I had ever thought about for her, she takes her own life. She, who I never thought had a depressed bone in her body, gone from her own hands.

    She was intelligent, driven and oh so very sweet. But she was so stubborn when she thought she was right and I suppose, she thought she was right about this. I never knew of the turmoil and conflict and torture her soul was in and she stopped it. She should have tried to stop it another way, never this.

    Anyway, I just wanted you to know I respect your piece and I can certainly see your point of view. Life is worth fighting for and there may be some chance you will live if you have mental illness. When someone has cancer, and you are close to death, the choice is no longer yours. But then again, if one is suicidal, the choice is not theirs anymore either, it’s the depression that makes them think it’s the only way. I’ve been there way more than once and I know.

    I wish you peace and happiness and never give up.

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