Welcome to this month’s Blog Carnival of Mental Health, on the topic of hope and despair. They are, ostensibly, a simple couple of concepts – but within each, there is a lot to be said across the Madosphere.
So let’s see what our entrants made of it. Please be aware of potential triggers in the following, particularly in relation to suicide. Thank you to everyone that has taken part, and to all that tweeted, Facebooked or otherwise promoted the Carnival; it was much appreciated. In no particular order:
…it’s like a journey of life: how on this 300/800/more kilometre walk on pilgrimmage routes that have been travelled by thousands of people over hundreds of years, you just have to take each step as it comes, and meet each challenge as it presents itself, live with just the stuff you can carry (ie, literally in your backpack as well as mentally). That although there is reasonably good signage *you* will get lost sometimes. You will have problems, sometimes the worst ones you as a person could cope with. But you will learn to deal with these, and learn that you *can* cope. How you have to trust that your needs will be met; that you’ll find water, and food, and somewhere to sleep. That language is no barrier; that we are all people with a common ultimate goal, with the same needs, hopes, and desires. That you can only walk at your own pace; sometimes that means your journey is solo, but at the end of the day, you are never alone, and your camino family is like all the relationships you will ever have.
But that was then. As anyone who has had the misfortune to be traipsing around in my blogland recently, the optimism of hope just hasn’t applied. That whilst I’ve *been* in great places, and was hopeful I’d get back there, it really ain’t gonna happen. This month has seen little cause for hope, and much much more for despair. I seem to be pretty stuck in a downward spiral with the madness really taking over, but the really sucky thing is that it’s been contrasted by some things and people which are so damn rock you wouldn’t believe it. But you don’t want to read about despair, mine, or anyone else’s. It’s shit.
Ash, a commenter here, has emailed the following contribution, which has left me sad but encouraged in equal measure:
‘D’ is for despair and also depression. In my case I naively thought it was a one off event; post-natal depression after the birth of my child. How could this be happening to me? We had wanted this for so long and yet when it finally happened it came along with a side order of depression. I struggled to admit to it. I refused at first to take any medication but then I had to surrender to the truth and -take time off work!
A few years ago my husband suffered a stroke at the age of 37 which left him registered blind. Immediately my symptoms returned.
Here entereth despair. For me now it seems that when something traumatic or stressful at all occurs, depression tightens its grip and I hate it. I was a confident, outgoing person who ok, worried a little about “stuff” but was very positive. Now my head is constantly filled with negative thoughts. I can’t look on the bright side anymore and the rage within me is unbearable. I have lost myself and hate what I’ve become…but hold on…
…Hope – it is out there. Over the past eighteen months I’ve been going to a therapist who has been guiding me along this difficult path. I have the support of my family and close friends. I have my faith. Most of all I have realised that I am not alone. As I trawled the internet I read similar stories. Depression I have found is something that people find difficult to understand if they’ve never experienced themselves, but by reading other sufferers’ blogs and accounts it has given me hope.
I’m so glad the Madosphere (amongst other things) has restored some of your hope, Ash
Depression is not a sin. It has never been considered a sin. It is an illness (and usually a treatable one.) When my Church tells me despair is a sin, it does not mean depression, extreme sadness, or a lack of joy and enthusiasm are morally wrong. These things may be, and often are, things that make me tempted to despair, but they are not despair in the theological sense of the word. If you are a Catholic, despair means that you allow your emotions to stop you trusting in God. I may not feel like God is on my side and that I might as well give up and die but as long as I let my faith and my reason to overpower that feeling, I still have the virtue of hope. It is important to understand that, because I have come across Catholics and other Christians who believed they were sinning by experiencing a mental illness. This is like believing that coughing is sinful.
I have faith that Jesus will pull me out of this. Not that He will magically make it go away. In the early days, I hoped for an instant, miraculous cure – but I really wanted a miraculous escape. I believe God has a purpose I cannot yet perceive in testing me in this way. As Saint Paul said ”We glory also in tribulations, knowing that tribulation worketh patience; And patience trial; and trial hope; And hope confoundeth not: because the charity of God is poured forth in our hearts, by the Holy Ghost, who is given to us.”
Three years ago, I was convinced I would not make it to the end of the year 2008. Everyone kept telling me that I’d find a good place to live in the long run, and yet I believed I was going to die before then. So the hope that people tried to give me, turned to false hope and despair.
Now, I’ve made it three years since then. I still feel sometimes that I’m having a foreshortened future, but I realize this is probably a PTSD trait coupled with despair from it having taken so long for me to find a suitable living place.
Now in September I’ll be moving to a new place that is hopefully suited for my needs. It took years for me and my staff to find this place, but I think it will finally be somewhat safe there. I will also get married this September. Finally, it seems there is hope for the future. Now if only I could overcome my fear that I’m going to die as soon as I finally feel better again.
Not long after my son’s birth, around the age of 47, I started to get sick. I was a pastor of a small church in the Blue Ridge Mountains of Virginia where I could be hiking on the Appalachian Trail in a matter of minutes. It was an absolutely beautiful place to live! This small country church where I served was filled with the greatest people on the earth. I loved them. We grew close together through suffering; like a family that comes together at the death of a parent or a child. Once I arrived at my new church, it seemed that everyone had waited just long enough, so that they could die and have a pastor there to care for them and bury them properly. The old started dying one after the other. There were suicides. There were strange diseases brought about through environmental pollution. Cancer was everywhere. And we held each other, cried together, and relished the beauty of joy when it came to us amidst so many dark days.
Finally [after experiencing a range of somatic as well as psychological symptoms], I came up with the only solution that made sense to me. I was dying of a brain tumor, and it was growing at a pretty good pace. My father was a surgeon and I had heard of some of the symptoms before… The headaches were increasing. I couldn’t read. I couldn’t concentrate. My ability to write was deteriating. I was having trouble walking and standing. I couldn’t sleep. At times it was hard to understand what others were saying to me, and my environment started to take on a kind of surreal nature.
He asked me a couple of strange questions such as, “Do you find that you cry all of sudden? Have you been thinking about death more than usual? What has your mood been like?” And incredibly, about five minutes into the exam, instead of being sent immediately to get an MRI, I was being diagnosed with Depression. I was stunned! “How could that be? What about all the physical aspects of my symptoms? What about my headaches? Are you absolutely sure!” The doctor was confident of his rendering and looked concerned. My wife joined in with the doctor and pronounced, “John, can’t you see that this church is killing you?”
Ten minutes into the examination I was being prescribed my first antidepressant famously named Prozac. Twelve minutes into this mind bending revelation I was ordered to take some time off. Fourteen minutes into this, I was still an unbeliever, but regardless of my personal disbelief, the doctor referred me to a therapist. After fifteen minutes I walked out of the doctor’s office numb, confused at what had just taken place. In one hand I carried a piece of paper to give to the pharmacist. In the other hand I held a card with the name of my first therapist. Fifteen minutes ago I had this picture of dying from a brain tumor with grace and dignity, now, I had to continue to live in my messy life battling some unknown force named depression.
Up until that point I thought I had everything under control–that is, I had developed a set of routines that I thought were impenetrable. However, I went from only going to school online and being subject to few real social situations to having a full-time job and an internship. It was too much. They broke down my structures so much I couldn’t recover. And so I gave up.
I let myself be taken by chaos. I let myself fall further and further down. Granted, I started planning for suicide, which ironically in itself brought structure. But for the most part, I let all structure go.
I am learning that there is a balance between structure and chaos; it’s not an either/or situation. There will always be hope and despair in my life, sometimes at the same time–and I’m learning that that’s okay.
I’ve been ill for more than ten years, this is part of me now. It’s who I am. My illness, by it’s nature, gives me moments of sheer bliss and moments of total sorrow. It’s easy to forget the despair when I feel amazing, it’s easy to dismiss it when driven with manic energy. I can live life at times so full of hope and expectation. It feels like a gift. That’s why there are times when I am well and yet I’ll be craving an episode, a relapse into mania. I want the thrill, the joy, the hope it gives for something better than just mere life.
…[W]hy would I say recovery causes me despair? Well, as I said, this is now part of me. It’s shaped me. It’s who I am, or at least so strongly tangled with who I am I don’t know how to separate the two. What if I lose part of myself?
Despair is then discovering I’m not naturally confident or articulate. I’m quiet and shy. Despair is losing so called friends as you’re not the person you had appeared to be. Monotony. Routine. Feeling tired. Trying to pick up all the broken pieces of your life and rebuild. That one is the hardest. Starting life from the beginning, picking up on life before sickness, being so far behind.
Police baton hits windscreen hard. Hands up. Feet off pedals. People screaming at me. Engine off. Keys in passenger footwell. Reaching for door. Bang of baton on side window, hands around head. Baton through window. Baton hits my head hard. Other window goes in. Glass flying. Door open. Not resisting. Punched twice in face. Being pulled hard by arm. Seatbelt gets done. On floor. On glass. Cuffed. Police screaming at me. Still not resisting. Pulled onto feet. See damage done to car. Absolute pit of despair opens like a trapdoor.
I don’t know how hard that is to read but even after all this time it’s so very very painful to think about. I can’t help but cry as I remember it.
But where’s the hope?
A shred of hope was given that day when a different doctor changed my meds off SSRIs to something totally different. Which got me out of hospital. Which got me back from the abyss.
I despair that I didn’t die every time I remember that time. I just… it… I was ripped apart over several months from that day on.
I hope that others won’t have to go through any of what I went through. From the bad care to the lies of the police. The hell of bad meds choices. Everything.
I despair because I know that’s exactly what will happen.
So I guess all I can do is define what it means. Despair for me is the crash that follows the euphoria. It could be Digging lithium and paracetamol out of the ash in your car’s ash tray where you had to stash them momentarily as someone walked by and still chewing them longingly along with the soot.. Despair is standing with a ready tied noose looking into icy waters, at 3am. Despair is sitting in a crowded AnE department with a security guard within arms reach because you pose that high a risk. despair is being locked away in a cold 6 foot square box for 11 hours while people outside organise one of the 12 mental health act assesments you have had in just a couple of years. But despair really is realising you are treading that final line that your death is inevitable, having your consultant a specialist in your mood disorder, agree with you, hearing him say ‘when you die’ not ‘if you die’. Despair is knowing there is no cure nor may there ever be.
And yet here I am and things did get better. I wont say that things don’t get bad, I recently had another 8 related slip, but I don’t recall any moments of True despair in the last couple of months. I may not always feel so good, but I know there is another path, that with careful monitoring, some meds etc, I can live my life, I can have a family, see my boy grow and hopefully one day soonish I will be back in full time work. Now that is hope- a shy and cautious one but hope none the less and yes it is scary but nothing ventured nothing gained, and there is another world, beyond mental illness, blogging, appointments etc.. and I have lingered too long on its sidelines I want to get back in the game, and live my life as me, not a diagnosis thats all I want from hope, thats enough.
One of a number of people in the Madosphere who is both a patient and professional, Lothlorien addresses this week’s big mental health news story: Marsha Linehan, the creator of (my favourite! ) therapy DBT, suffered from borderline personality disorder herself:
I have spoken to my own therapist about my becoming a therapist and the fact that I would be a therapist who has had DID. I worry about people finding out. What would they think? Would they think I was less competent? My therapist views me as MORE competent, and she says I have so much to offer, not only to clients but to clinicians as well.
The article talks about how Marsha Linehan felt incredibly suicidal and engaged in various forms of self-injury for which she still carries the scars.
My favorite part of the article, which I can identify the most with and is exactly why I am persuing my MSW in Clinical Social Work is below:
….referring to her suffering, suicidality, and cycling hospitalizations which yeilded not much help for her, she says, “I was in hell, and I made a vow: when I get out, I’m going to come back and get others out of here.” (Marsha Linehan)
And she did exactly that.
What an amazing story.
Regular readers will of course know that I am not Marsha Linehan’s biggest fan, because of my lack of tolerance for DBT. However, the article in question did inspire in me a newfound respect for Linehan; just because I don’t like DBT doesn’t mean that it doesn’t work for others, and in any case – Linehan used her own experiences to help others struggling as she did. So I’m with Lothlorien on this
Lothlorian also submitted a revealing and fascinating series for this Carnival entitled Welcome to the World of Inpatient Care. It begins here.
The last time I went to see my therapist, I was talking about how I’ve stopped writing poetry, and how much I miss it. I’ve been climbing walls with how much I miss it, actually. It’s not that I’ve run out of ideas or gotten bored. It’s just nothing’s coming out with the same energy it used to. Most days I feel like I’ve got nothing to say (or nothing worth saying, anyway), and when I write anything down it sounds contrived and dull. I’m reading absolutely loads of it still, and I don’t think I’ll ever be able to get rid of it completely. But something vital is missing at the moment and I have no idea what. It’s been over a year since I finished a poem, and about that long since I wanted to.
She [the therapist] mentioned last time I saw her that I may have been relating to myself back when I wrote the last poems in a way that I won’t be able to do now. I’ve moved on since then, in many respects things have gotten better, although more confusing in equal measure. I’m not the same person, so trying to get back something that I believe has been lost might not be the best way to go about this. It’s true that I have little idea how to relate to myself at the moment. A lot of things have happened very fast recently and I’m still struggling a lot. So trying to recreate a time that is essentially past is not going to bring back my work. The trouble is… I don’t know what will.
I’m going to keep talking about my writing in therapy, and I’m going to keep continuing to feel hopeful that it’ll come back. There’s just large amounts of frustration and despair in the meantime while I work on this. One thing I had an idea of more recently was that I do need to allow myself some space and time to write every day, even if it’s just for half an hour. I gave up on doing that when I thought nothing was coming of it, but I’m starting to see how important it is to allow yourself that space.
NICE (the National Institute for Health and Clinical Excellence) is consulting on a draft guideline on Improving the experience of care for people using adult NHS mental health services. Much of the guideline is based on other guidelines for specific conditions. The consultation is not public even though the documents are — only registered stakeholders can submit comments.
There is little or no mention of discharge from the system altogether. Even the small section on discharge from community care (10.3) emphasizes continuing support and the availability of top-up appointments and re-referral.
It’s as if the entire mental health system has become an asylum in the community, a grim institution that no one ever really leaves, with the hospital ward taking on the role of padded cell for those patients who become too troublesome. This ties in with the widespread belief, a false belief, that mental illness indicates a fundamental weakness in you as a person from which you will never recover, and that the best you can ever hope for is life-long struggle in the care of others.
Lest anyone despair at the bureaucratic numbskullery of the NHS, it should be said that this NICE consultation is hopefully one of the last to get away with a tick-box approach that sidesteps the question of whether people are actually getting better.
Although it may take years to arrive, hopeful new thinking is on the way — the thinking that the outcomes people experience are more important than the NHS’s internal procedures. NICE might have to change or be abolished to make way for the new thinking, but whatever it takes there is at last hope.
I’ve been having “headaches” for a long, long time, and haven’t been able to “see” things nearly as well as most people I know.
My family doesn’t believe in “astigmatism”, and so I didn’t either, really, for many years. (I mean, sure, I bought that it happened to other folks, but my own life hadn’t been hard enough to give me cataracts. Yet. Right?) All of us squint constantly, for what it’s worth.
In the meantime, I tried doing eye-exercises religiously. I did all sorts of complicated things with the contrast and text-size settings on my computer at work. I switched to a diet high in vitamin A, and gave up reading in situations with less than ideal lighting. I wore polarized sunglasses, hypoallergenic mascara, and I did my damnedest to get enough sleep.
But the headaches and the encroaching blindness just got worse.
And then someone jammed a toothpick through one of my eyes, and I finally felt justified in going to the doctor.
I am equal parts hopeful that these glasses that so many people sing the praises of will help me, too, and fearful that the doctor will look at my eyes and say, “Your problem is that you just don’t do enough eye exercises.”
Yeah, I know that feeling I really loved this analogy, though.
BtF from Behind the Facade looks at the issue of raising suicide prevention awareness using the media:
Breaking down the barriers and creating change is hard. But it can be done, and it has been done in the past. As said by John Brogden, “Forty years ago I’m sure that people would have been aghast if you suggested that we should suggest to women to get their breasts tested. How could you use that word in public? Now cricketers play cricket in pink once a year or whatever it is to promote that you know – how could you talk to men about testicular cancer or prostate cancer – oh my god – we are big enough and smart enough to deal with this now rather than find excuses and I don’t want us to find excuses to telling people who feel this way – there is a way to deal with it. That’s the message.”
The closing message I’d like to quote was also made by John Brogden. “One thing I want to make sure that people watching this show understand and I don’t think there is a person here who would disagree with one message from tonight… it’s that you’re better off talking about suicide than not.. I’ve met parents who say I wouldn’t know how to talk to my kid…. You’re better to talk about it than not talk about it as that will open them up… you’re not going to put the idea in their head and that’s a great worry that too many people have and I’d like to think that people will turn off the TV after this and think about talking to friends and family and this very important issue.” I couldn’t agree more. The time is now to talk about suicide.
I couldn’t agree more either. Perfectly put.
Over at the blog My Crazy Bipolar Life, the author is also writing about suicide, but has an interesting take on the subject (and, indeed, the Carnival’s theme): does the perfect suicide note exist, she asks?
I have tried visualizing how I would feel if it was I who was reading a suicide note of someone I loved and it was through this that I realized that no matter what they wrote it wouldn’t make me feel any better about their death. I think it would be impossible to leave a nice suicide note because no matter how you choose to write it, the recipient is going to be just heart broken. If it were me sitting reading a suicide note from a family member my head would be spinning at a hundred miles an hour. I would have so many questions – why couldn’t they talk to me? did they try and get any help? if they did why did no one help them? why couldn’t they see that this mood would pass and wasn’t permanent? why did I not know something was wrong when I last saw them?
Then that brings the reader to the next point. When did I last see the person? They seemed OK. I’m sure they seemed OK. They weren’t overly happy but joined in with conversation here and there. They stayed a decent amount of time and didn’t seem uncomfortable. Why the fuck have they done this to their self? Confusion. Anger. Heart broken again. Maybe they would even blame themselves. How could I let my Mum or Dad ever think they didn’t do enough or could have done more?
The answer is I can’t. I can’t write the perfect suicide note. I can’t even write a nice one no matter how many times I tell them I love them in it. And ‘I’m sorry’ just seems so trivial, it almost seems rude that I didn’t give an explanation.
…[I]f I can’t write the perfect suicide note, then what hope is there for me having the perfect suicide?
Hopefully (from my point of view) none! Your life is worth an awful lot, you know
Remember how I was in February? I was such a mess, so enthralled with the idea of ending my life, that NewVCB considered putting me in the day bin…My point is, I was in no fit state to do anything. Lifting my head off the pillow was a genuine and concerted effort; getting downstairs was a fucking good achievement.
I wouldn’t even have been able to go on holiday in the first place, never mind committing to driving in a strange land, in a fashion diametrically opposed to that to which I am used.
And if I had got to that point, I’d have had a complete, full-blown panic attack at the first sign of trouble with the car. Having the various mishaps we did have would have probably sent me jumping into the nearby quarry. Having been told that I’d marked the vehicle and was liable to pay for it would have seen me collapse in the street, begging the bloke to forgive me for my (non-existent) carelessness.
I wouldn’t have dared speak anything other than the occasional “hola” or “gracías” in Spanish, and even that would have been delivered with a head-bowed meekness.
Instead, I behaved methodically, calmly and generally confidently throughout.
So I’ll continue to hope – hope for the best, be prepared for the worst, and take what comes.
And that’s all folks!
(I don’t think I’ve forgotten anyone, but I ended up with far more submissions than I expected, so if I have omitted your entry, leave a comment here and I’ll add it straight-away. Please accept my apologies if this is the case!).
The next Blog Carnival of Mental Health will be hosted by Behind the Facade, and the theme will be stigma and discrimination. If you are interested in hosting a Carnival on your own blog, please contact Astrid van Woerkom, who is the facilitator of the project. I believe that she has monthly slots available from August onwards.
In the meantime, I hope you enjoyed reading the blogs here! Toodle-oo