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Jon's Hideaway

Memorial blog: Jon’s Hideaway

This is a memorial “blog.” In keeping with my husbands wishes and to keep knowledge about depression and its life threatening effects alive and in the public domain I am hosting his work on this site. Jon fought depression and understood it clearly. Here is hoping that his words will help others.  Rest In Peace Jon.  

Entries have been left as he wrote them. I did add a link to a TED talk.  

Book: The Man Who Wasn’t There: Investigations into the Strange New Science of the Self

I stumbled across this interview and found it completely fascinating.  It’s something that I’ve thought a lot about – out of necessity – since my illness causes fundamental disruptions to my sense of ‘self’.  I often say that that I use the pronoun ‘I’ only out of convenience. It really doesn’t have much meaning for me. Rather than being able to take it for granted, as I imagine most people do, I have a kind of methodically constructed definition of what ‘I’ means.  It helps but it’s not a replacement for the real thing.

I’ll write more about this when I’ve read the book.

In the meantime, this interview with the author of the book is really worth reading.

*****Note the link was lost the aunthor’s name is Anil Ananthaswamy and here is his TED talk:

t

This May Seem Like an Ordinary Scene from Anyone’s Kitchen …

The photos at the end of this post may seem ordinary.  But they’re anything but.

I generally use the diagnostic label Bipolar Disorder and ADD to describe my condition.  But diagnoses in the mental health business are anything but precise.

In my case, there’s a component that I generally call just ‘scrambled thinking’.

It’s very hard to describe.  I generally use metaphor to explain it to myself and to help me to understand it so that I can learn ways to cope with it more effectively.  But, in general, just ‘scrambled thinking’ works.

In technical terms, it has to do with the so-called ‘executive functions’.  This is the stuff that happens in the brain’s pre-frontal cortex, behind your forehead.  It’s where you plan, think things through, prioritize, sort, sequence, organize. All that stuff.

Most people take for granted that that stuff just works.  But, if you’ve experienced it when it doesn’t, you know that it wreaks havoc with everything you try to do.

I think one experience that most people have had that might make it a little more familiar is what happens when you lose a lot of sleep.  Have you ever missed a nights sleep because you were cramming for an exam, preparing for an important presentation at work or because you were caring for a sick baby?  You know that foggy, groggy, fuzzy-headed feeling of just not being able to think clearly? Imagine it being that way ALL THE TIME! That’s my life, more or less.

But, since I started using Ritalin over six months ago now, this has gradually improved.  It’s far from a cure. It’s not even entirely manageable. But it’s improving.

So, back to the kitchen …

I like to cook.  First, because I love good food.  Despite the depression, which takes the joy out of most things, I can still enjoy good food.  Second, we’re poor. So, to get good food on our budget, we have to make it ourselves. Third, It’s in the vein of being creative, inventive, building things, in a way, that’s always been rewarding for me.

Finally, it’s been a benchmark for how well my mind is working.  How well my executive functions are working.

I suppose that for people with normal functioning brains, cooking may seem straightforward.  But, for me it’s very, very difficult.

In the past, it’s been a very chaotic process. Even simple recipes were almost impossible and very stressful to cook. Recipes are generally just a linear sequence of steps. Think making pancakes. One bowl. Dry ingredients. Wet ingredients. Mix. Drop some on a hot plate and cook. That should be easy to follow, right?  But, before I could master pancakes, I had to read and reread the recipe over and over again to understand the sequence.

Eventually, I got an App for my iPad called Paprika.  With that I can record and edit recipes in a way that I can understand them.  I have to carefully sequence and word them and break them up into steps that I can understand.  This helps a lot. But, Paprika also allows me to search the Internet for recipes and download them into the App.  The recipes on sites like allrecipes.com are formatted in such a way that Paprika sucks the list of ingredients and the instructions and even the picture in and creates an easily editable recipe.  Often, the recipes are confusing to me. But, I can study them and edit them so that I can understand them and follow them better.

But, it’s still really difficult.  These limitations create a lot of extra mental ‘overhead’ that consumes energy and creates stress that detracts from the rewards of the experience.

I suppose one way to think about it is that I have enormous difficulty seeing The Big Picture of a process like cooking a meal.  I can hold the individual steps in my mind, sort of, but only one at a time. It’s extremely difficult to put them in sequence mentally.  In fact, I get confused very easily and forget steps or get them out of order. I have to constantly refer back to the recipe even for things I’ve done many times.

Pancakes are relatively easy to cook now since I’ve done them so many times and it is a very simple linear process.  But, many recipes are not linear. One of my favorite meals to cook is Chicken Marsala. It involves a frying pan and a sauté pan and slicing chicken and coating it in a flour/spice mixture and slicing mushrooms and spring onions and doing it in several parallel streams.  It took many, many iterations to get this one down. But, even though I’ve also cooked this one many times, each time, I have to sit down ahead of time and carefully review the recipe first. And it’s still difficult to do. But, the results are generally worth it.

The other problem I have is that I can’t see the process from beginning to end.  Only the first step. Then I might remember the next step and then the next. But, generally, I have to refer back to the recipe to keep track of things.

The upshot is that generally cooking is process of carefully reviewing the recipe as best I can and kind of vaguely understanding it and then just diving in and it just kind of chaotically more or less happens and may or may not turn out.  I often feel like I’m flying blind. It often feels like, regardless of how many times I’ve cooked a particular meal, I’m doing it for the first time. It’s very frustrating.

The same applies to every other mental task I try to do, which is everything. I have to carefully think through almost everything I do, no matter how simple and frequently, it feels like the first time all over again.

So, here’s where the pictures come in.  Over the years, at various times, I’ve had the strange experience that all at once it’s as if some kind of neurological switch has been flipped and something just starts working.

Last week, I was going to make good old American hamburgers.  It’s something I’ve done many times and it’s always been the chaotic process I’ve described above.  But strangely and unexpectedly it was different this time. What you see in the photos is how I laid out everything ahead of time before I started doing anything.  It’s probably hard for you to understand, but up until this event, this was literally, neurologically impossible.

I didn’t even consciously intend to do it this way.  It just kind of happened, as if it was just natural, which, I guess, for most people it is.  I laid out the mixing bowl with the burger, the spices, the soy sauce and liquid smoke that would go into the burgers.  I laid out the mushrooms that would be sautéed, the tomatoes to be sliced, the cheese to be sliced, the tools I would use and the bowls they would go in so that we could load up our burgers at the table according to individual taste.  I even laid out a container for the organic waste. I got the grill down and even the flipper that I would use. And I put the sauté pan on the stove with the butter and wooden spoon. The fridge shows the pink lemonade in the white pitcher, already prepared for the occasion.  You see the bowl and towel next to the deep fryer, ready to make the fries. Not shown is that the table is already set, including condiments, ready to use. That last is something that, prior to this, I would consistently forget to do until the last minute when everything was ready to be served.  Interestingly, there’s an onion on the cutting board with one end cut off already. I almost dove into dicing it in the usual chaotic, out of order way I’ve always done. But, I recognised it and checked myself until everything else was ready.

I was able to look over the scene and verify that everything was ready and see in my mind the whole process, from beginning to end, more or less.  A kind of calm came over me to replace the kind of almost panicked anxiety I would usually feel when undertaking something like this.

Then I pulled the trigger and everything went off without a hitch.

It was a magical experience.

That doesn’t mean that it will be like this from now on.  I know from experience that this will come and go. What it does mean is that this is a new high-water mark and a clear indicator that things are improving and hopefully, as time goes on, this will become the norm, not the exception, and I’ll have access to this kind of clear thinking in other areas as well.

***** Note that the images did not transfer. I’ll work on it.

What Do You Do When Someone Tells You They Are Suicidal?

Recently a friend of mine asked for my input about a situation with a relative of his.

He had been chatting with him online and the subject of depression came up.  This relative expressed that he was struggling and said some things that were concerning.  He spoke of suffering from Depression, Bipolar disorder, PTSD and having suicidal thoughts.  He also said that he coped with the suicidal thoughts with humor.

Hard to know what is going on in chat, right?

So, here’s what I told him (edited).  I thought it might be useful to someone.

———-

I don’t think you should *ever* take it lightly if someone is talking about suicide or expressing thoughts about persistent depression or mental health issues.  I also don’t think you should just take them at their word or accept their reassurances that they are coping successfully, whether it’s with humor or otherwise.

I’d first want to get an idea of his current state. Is he in some kind of immediate crisis? Is he in a dangerous situation? Has there been a trigger of some kind?  Some kind of stressful event? Is some kind immediate intervention is important? If you suspect that some kind of immediate intervention might be necessary, don’t hesitate.

Also, I think the medium of communication can make a difference. You miss the a lot of non-verbal information in chat, email, etc. But, sometimes people will talk about things in writing that are difficult to talk about in real-time conversation. Be sensitive about using the right combination of methods.  Switch to the phone if you think it will help.

If it really does sound like an emergency, urge him to contact friends of family or call the National Suicide Prevention Lifeline at 1-800-273-TALK.  Unfortunately though, if someone is in an acute suicidal crisis, it may not be possible to persuade them to take action.  That degree of depression and crisis can be emotional and mentally paralysing. He may not be able to think clearly enough to take action even if he wants to.  You can’t be sure if he will follow through. If you think he is in genuine danger and is resisting taking action and you can’t find friends or family to intervene, consider calling emergency services and talking to them.  You can find the suicide prevention number in the front of you phone book. If it is truly urgent, as in, he has gun or a knife or is on a ledge threatening to jump, call 911 and keep him on the line. They are equipped to deal with this kind of thing.

If he’s not in crisis, try to get an idea of the broader picture.  Is he functioning well? Working? Engaged in normal activities and interests? Spending time with friends? Or, is he deviating from normal life activities or withdrawing from them? Is he aware of any changes?  Does he have insight that things are different, for better or worse? People who have insight into their situation are more likely to recognise problems and seek help. You can be discrete by carefully questioning him or if you have contact with his family or friends, you can contact them.

He’s referring to Mood disorders, clinical depression and PTSD. That’s a combination of things that suggest to me some kind of complicated history of environmental and/or clinical issues. This is pretty serious stuff. That also means it means it might be difficult to treat or resistant to treatment. It sounds like he’s got some level of knowledge about it and has put some thought into it. I’d be wondering first if he is self-diagnosing (Internet of whatever) or if he’s in treatment and diagnosed by a professional. The potential seriousness suggests he needs to be in treatment. If he’s not, is he resistant to getting treatment? If so, that’s a red flag to me. If he is in treatment, is he confident in his health care provider and treatment? Psychologist, psychiatrist, whatever. Does he feel like he’s improving? Does he want to get ‘well’, whatever that means to him? How hopeful is he about that? How committed is he to it? How stable is he? Is there the potential for serious escalation? If there’s a risk, Is there an escalation plan? For example, is there a trust level with his providers where he would contact them if his condition escalates? Does he have a social safety network that is aware of his condition that he would talk to if he were to escalate?  At the point in my recovery when I was unstable and couldn’t think clearly, I had a placard posted on the wall in my house with instruction in large print for what actions to take and who to call.

It’s hard to talk to someone about this kind of thing if you don’t have some experience with it. The stakes are high and you’re not sure what to say and the effect it will have.  Trust is crucial. Cultivate it. It sounds like he’s willing to talk to you pretty openly, which is a big deal. Be sensitive to the fact that It’s very hard to find people you can trust to talk to when you have this kind of problem. Most people don’t know how to deal with it. I think a lot of people suffer in silence because of fear of rejection, judgment, stigma.  There is often an increased level of distrust, defensiveness, fragility and vulnerability that is heightened as a part of the illness itself. This kind of condition seriously affects how you see yourself, your value, whether you are deserving of support and your ability to advocate for you own care. You can feel like you are not worth saving. It can feel like the situation is hopeless and the problems bottomless and that no one can help you.  You feel like you have nothing to offer anyone and that you are only a burden. So, you’re not worth the effort, sacrifice and investment in time and resources to support you.

The visible reality of physical illnesses tends to attract attention, concern and support spontaneously.  This kind of illness is different. It’s hidden and it can make you feel like it’s your fault that you are in the situation you are in and you don’t deserve support.  It makes it difficult to reach out. It can be a huge relief when you find someone who is simply kind, gentle, sincere, patient, empathetic and, perhaps most importantly, non-judgmental.  Gently, sincerely telling someone that they are unconditionally loved and valuable, even when they resist it, goes a long way. Try to keep in mind that the resistance to your efforts is probably a part of the illness itself – a product of how the illness makes them feel about themselves – not a lack of appreciation.

To give you a real-world example, 20 years ago I had to gradually convince a friend to get help over a period of several months. She knew something was wrong but thought she was handling it. I used the ‘Depression is as serious as cancer’ argument with her and that finally got her to do something. I eased the way for her by arranging for a consultation for her with my therapist. She ended up being referred to a psychiatrist and started on medication. She’s told me many times since that she’s sure that saved her life.

I hope that’s helpful. If there’s anything else I can do to help, let me know.

Six Months

Six months ago on February 18th, I started taking Ritalin (in addition to the rest of the cocktail that manages my condition).

It has changed my life.

I want to go into some detail, but as it always is, my mental energy level is unpredictable and it’s just not up to it at the moment.

But just briefly, I recently posted about my Mental Health Scaleand I will use that to illustrate how things have changed.

I didn’t really see this clearly at the time, but prior to starting Ritalin, my score on the MHS ranged pretty consistently from -7 to -9.  I would say at the time that it got up to 0 but never got into the positive range.  It’s true that it never got into the positive range, but in retrospect, I can see that it never really got to 0 either.  The best I did was maybe -5 and that took immense and unsustainable effort.

I had resigned myself to this.  I didn’t expect it to improve much and I believed it was unsustainable.  I was committed to holding out as long as I could and doing everything I could to stick around but I did not expect to last forever.  I believed that suicide was inevitable unless things changed.

Now things are different.

I think there’s a good chance that I can avoid suicide.

I think there’s even a chance for stability and semi-normal mental health.

I would say that my MHS ranges typically now between -8 and +3.

NOT ideal, but that’s a huge improvement.

I still have spikes to -9 and occasionally -10.  But I also have occasional periods where I’m at maybe +5 or +6.

At first this happened only in the first couple of hours after taking the Ritalin.  It would kick in after 20 to 30 minutes and then a couple of hours later, I’d suddenly start to plunge back deep into the negative.  A second dose would not seem to do anything.

But, I’ve experimented with dosage and timing and stuck it out.

Often it has been VERY difficult.  It’s often seemed more painful to experience what it’s like to be almost normal and then return to the depressed state than to just stay depressed.  The contrast just makes it more clear how horrible the depressed state is.

It’s like I had a certain equilibrium in the state I was in.  It was horrible and unsustainable and I almost certainly wouldn’t have survived it long-term, but it was familiar and I had ways to deal with it.

Ritalin disrupted that equilibrium.  For months, I wasn’t sure if I could find a new equilibrium.  EVERY morning is still a monumental challenge.  It doesn’t matter how good I felt the day before, I always wake up in a -8 or even -9 state.  Anyone who has experience Depression with the big D probably understands it when I say that it is almost impossible to get yourself to do even the things that you know will make you feel better.  So, every morning, I have to absolutely force myself to take this medication that I know will pull me out of this horrible state.

But, it’s gradually getting easier because several things are happening.

It used to be that the effect of the medication came on suddenly and then stopped suddenly after a couple of hours and then it was back to blackness.  Having the lights go out was worse than not having them going on in the first place. Now, the effect comes on more or less as fast, but it lasts longer and tapers off gradually over a period of hours.

It used to be that a second dose had no effect.  Now, sometimes, a second dose does help, but not as much as the first dose.  So, through further experimenting, it may be possible to further optimize it.

Over this period, despite the ups and downs, there has been long-term improvement in both emotional and mental function.  I thrive on improvement. As long as I see improvement, however small, I can keep going. That’s why the resignation to my state prior to Ritalin was so dangerous.  But, I’m learning to recognize and deal with a pattern of punctuated improvement, plateauing and then punctuated improvement again.

My confidence that this is for real and that I will continue to improve is increasing.

So, I can feel good and optimistic, at least part of the time now.  For at least short periods of time, I can see how to solve the huge backlog of problems I have to deal with after many years of illness.  For short periods of time, I can actually enjoy things.

And, at least for short periods of time, for the first time in my life, I feel happiness.

I guess that’s worth something.

The Mental Health Scale

Have I talked about my Mental Health Scale before?

It’s how I tell myself, and others, what my mental health status is.  I often can’t do that in conventional terms because my mind and emotions don’t work in conventional ways that most people can understand.  I don’t even understand them very well. But, I can kind of generalize. I’m one of the lucky ones who, while I suffer from a condition that confuses my emotions and thought processes, has some insight into what’s ‘normal’. So, the scale is built on that insight to kind of indicates generally how healthy and/or unhealthy my state of mind is in terms that others can understand and that help me to understand where I am in relation to ‘normal’.  It’s also an indication, generally of how well I can function at any particular time. And it can be an indicator of my risk level for dangerous behavior and therefore when intervention is needed, such as changes in medication, therapy or, if necessary, hospitalization. Fortunately, in the almost 30 years I’ve been in treatment, while I’ve been on lots of medication, hospitalization has only been necessary once.

So, the Mental Health Scale goes somethings like this:

It ranges from -10 to +10.

The ‘normal’ range is from approximately -5 to +5.

+5 is a typical good day.  You feel good. You are looking forward to the day.  You’re optimistic, hopeful and maybe even happy. You have interesting things to do.  The future looks reasonably positive. There’s nothing excessively stressful happening.  You’re not overly anxious about anything. You’re enjoying hanging out with friends, family, your partner, your kids.  You’re enjoying leisure activities and hobbies. Maybe you’re enjoying binging on your favorite TV series on Netflix.

0 is neutral.  You’re not feeling up or down particularly.  Things are just ok. Maybe this is how you feel when your just waking up and having breakfast.

-5 is normal discouragement, anxiety or sadness.  Your overly tired. There’s too much work to do and you don’t know if you can get it all done.  You’re boss is hassling you. Maybe things are a little rough with your partner. Maybe your kids are giving you problems.  Maybe you’re depressed about Donald Trump leading in the GOP polls.

From +5 to +9 is the really good range.  I don’t have much experience with this range, so I’m kinda speculating.  But I think you would put things like getting a promotion, getting a new car, a dress or a cat in the +6 or +7 range.  Maybe going on a first date with someone you really like or celebrating your birthday.

+8 to +9 are really special days.  This is graduating from college, falling in love, moving into your first house.

+10 is a perfect day.  Getting that perfect job, getting married, having a baby.

I’m more familiar with the other side of the scale.

On this side of the scale, -5 to -7 is where you start to cross over into crisis.  Maybe work is not going well. You’re in danger of being fired. Maybe your relationship is on the rocks.  Maybe your child or a friend is sick and you’re worried it’s serious. Maybe your wrecked your car. You’re stressed, anxious and depressed.  You’re really sad. You’re not sure how you’re going to deal with this. You’re life is going to change. But, you think you can handle it. You’ll find a way.

Beyond -7 going down to -9, things get more serious.  This is something more like, you have lost your job. What are you going to do?  You’re marriage is breaking up. Your partner, a parent or a friend dies. This is a serious crisis.  You don’t know how you’re going to deal with it or if you can. You may start to question everything. Values. Priorities.  Goals. Your decisions, plans and strategies. The world is turned upside down. It’s more than sadness. It’s depression, hopelessness and despair. Somewhere in this range is what I call the ‘soft-suicide line’.  You’re not necessarily really thinking about suicide but you are starting to think about whether life is really worth living.

By the time you reach -9, you can’t deal with it yourself.  You’re losing control of your thoughts and emotions. Your ability to think clearly and your judgement is deteriorating.  The depression, hopeless and despair are turning into total, seemingly inescapably blackness. You’re starting to seriously question whether life is worth living and you may be having serious suicidal thoughts and may be thinking about suicide plans.  You are in danger. You may try to cope with it by ‘self-medicating’ with alcohol, drugs, sex or other high-risk activities. You need outside intervention from friends, family, professional support, or you’re likely to slip further, possibly past the point of no return.

-10 is the most serious.  This is, simple put, the hard suicide line.  You are in mortal danger. You *are* past the point of no return.  If you reach this level, and stay here for any length of time without intervention, you will kill yourself.  I think everyone has built in resistance to suicide and some reserves even at this level. But they are finite and won’t last, unless there is intervention.

I’ve logged a lot of time in this state.  So much, and during some periods for such long stretches of time that, honestly, I really don’t understand how I survived it.

-10 is very, very dangerous.  But, many people don’t know that there are people who also get into danger at the top of the scale too.  For healthy people, +10 days are wonderful but they are transitory. Too much +10 is very dangerous though too.  This can be the result of the euphoria of drug use, such as cocaine, for example. But, this is also a characteristic of the Manic Phase of Bipolar Disorder.   People who are manic may appear happy, positive and euphoric but they can also be very unstable. They can be prone to very poor judgement and risky behavior. And, much like it is with drug use, someone in the Manic Phase, can suddenly crash into the Depressed Phase.  Someone in a +10 state can suddenly and unpredictably crash into a -10 state. This is why Bipolar Disorder is arguably the most dangerous mental health condition. It has a very high mortality rate. Approximately 50% of people with Bipolar Disorder attempt suicide one or more times.  And about 25% die by suicide.

I’ve experienced the Manic Phases a couple of times.  The euphoria is intoxicating and it was a wild, fascinating roller coaster ride.  Your brain is on fire and you can do, think and feel things that you can’t in a normal frame of mind.  It’s a kind of window into what our minds are truly capable of. But you can’t control it and I’m a first-hand witness to the kind of collateral damage that someone can do to themselves and others in that state.  For all the excitement, I would never want to repeat it.

Sometimes, it’s hard to tell the difference whether someone is in a dangerous +10 state because of drugs or because of Bipolar Disorder because people with Bipolar Disorder, especially when it is undiagnosed and untreated, sometimes self-medicate with alcohol, drugs, sex or other things in order to cope with their mood swings.

Having said all of that, I kind of imagine that the ideal would be to range from 0 to +5 day to day with occasional dips to -3 to -5 and occasionally ranging up to +7.  Hopefully there are special events that reach up toward +8, +9 and even +10. And, while inevitable, hopefully events that lead to dipping below -5 are rare. I would wish that going into the -8 and -9 range is extremely rare.  I wish that no one ever had to deal with -10.

But everyone is unique.  Each individual has their own pattern and there are countless factors that influence it.

 In future posts, I’ll explain more about this and try to use it to help you understand what people with mood disorders experience and how it is different from ‘normal’ emotional experience.

My Mission and Vision for Jon’s Hideaway

It’s been hard to find the help I needed to cope with this dangerous monster of an illness I live with.  

It’s taken years … decades … to find the right combination of professional help, medication and other resources.

Finally, it seems to be paying off.  Although it is still a roller coaster, it is gradually leveling out.  It’s not easy. A healthy person might think that now that I have an effective treatment, it would be easy to put this behind me and get on with life.  That might be true if I had been healthy once, gotten sick and now I’m getting healthy again. Maybe, I should know how to be healthy and be able to pick up where I left off.  But, in my case, I never was healthy. My depression started at a very early age and my life has revolved almost entirely around coping with it with little left over for anything else.  So, I have to learn how to be a healthy, functional person, essentially from scratch at 55 years of age. It reminds me of accounts I have read of blind people receiving their sight later in life.  It is a complete life transformation.

But, the ‘mood positive’ state on my new medication is really wonderful.  And it gets gradually better and better and I am gradually gaining more confidence that it is real and that this is going to last.

The ‘mood negative’ state is still very difficult.

The two states are so very different in so many large and small ways.

Out of this comes what I think is a chance to carefully observe the difference and document it and share my experience.

I’ve been struggling though to understand why I feel such a passion for writing about my experience.  It’s very difficult. It requires being painfully frank and open. I get positive feedback which is essential to being able to have the strength to do this but I know that, this being the Internet, I’m going to get negative feedback too.

Then i saw this article on Upworthy and which draws from Stephen Fry’s brilliant documentary about living with Bipolar Disorder, ‘Stephen Fry: The Secret Life of the Manic Depressive’ which I saw a couple of years ago.  You can find it on Youtube here and you might be surprised at some of the people who he talks to about their own experience.

What really struck me though was this statement at the top of the article:

Every fearless ambassador for mental health is a lifesaver.

That sentence keeps echoing through my mind.  A lifesaver. Is it really that important? I believe it is.

I have often said: Depression is as serious as cancer.  When I was visiting my older sister in the US recently she reminded me that I had told her that almost 30 years ago.  She said that that was what convinced her to seek help and she told me that it saved her life.

It’s really true that helping people with mental health issues can make a difference between life and death.

I put those things together and realized that this is why I do this.

So, Here’s what I want for Jon’s Hideaway:

For it to be a place to go to hear about my experienceand see that it’s possible to survive, cope with, manage, overcome and live a full life with a mental health problem.  While this is still very much a work in progress for me, I have periods now of real happiness and well-being. I’m learning to cultivate those periods and expand them. And they help me to cope with the other times when things are not so positive.

To provide a collection of curated resources to help those with mental health issues.  It’s hard to navigate through the endless supply of available articles, blogs and websites to find quality information, especially in a format that is easy to understand when you mind is not working normally. In my view, people with mental health issues need concise information with substance to keep them moving and improving when it is difficult. This will include educational and reference material, sources of inspiration, biographical material about people who have coped successfully and resources about new or upcoming treatment options.

To provide a collection of practical tools for every day use.  Resources, inspiration and stories are helpful but you also need tools you can hold in your hands, literally or figuratively.  I have had to be proactive, creative and inventive to come up with ways to live with this thing. I’ll share those plus anything else I find that others have used.

Those are the basics.

I’m not a crusader or a rescuer.

Just someone with some knowledge and experience that I hope might be helpful.  And I just hope that it will be useful to someone and make a difference.

Depression and Anxiety Made Visible

I have always tried to capture my experience with Depression and Anxiety in writing, mostly through metaphor.  I’ve thought that music might be a good way to convey it but that requires skill I don’t have. I do make extensive use of abstract visuals such as charts, graphs and diagrams to both represent it and cope with it.  I’ve thought of using painting or graphic design … but again, the skills. But for some reason, I never thought of using photography until now.

I wonder if these images mean something to someone who has not experienced Depression or Anxiety, but they resonate deeply with me.

Please visit Katie Crawford’s site to see the whole collection

Here’s just one example: 

Happy Birthday to Me!

Well, I’ve hit the double nickel.  At 16:30 my time, here in the Netherlands, I will have arrived on this planet fifty-five years ago.

It’s been quite a ride.  It’s amazing I’ve survived it.  I don’t really understand how I’ve done it.

I don’t remember anything from my first five years but photographs from that period seem to show a normal, happy, healthy kid.  But, in my earliest memories from kindergarten and first grade I am already struggling socially and experiencing serious depression.  It’s a long story that I intend to write about as time goes on and I hope it’s helpful to someone, at least to know that they’re not the only ones and that maybe there’s hope to overcome it.

Fast forward to 1985, three decades ago, and I was descending into the worst 3 years of my life from ’86 to ’89 and honestly, I did not expect to survive another year, let alone till now, three decades later.  It’s staggering and incomprehensible to to me that it’s been this long … that I’ve been on this long detour this long.

I call that period from ’86 to ’89 ‘The Dark Ages’.  I am a native Californian, but in 1985, I was living in Utah, one of the last places on earth I even wanted to live and my mental health was deteriorating rapidly.  In early 1986 it was becoming dangerous, and on July 4th I left Utah, and returned to California for treatment. My first diagnosis was schizophrenia, one of the darkest and most terrifying of all mental illnesses.  I was told I it was incurable and that I would have to accept that and adapt to as best I could. And I was put on heavy medication with terrible side-effects. I was devastated. But, I refused to accept that diagnosis.  As fragmented and impaired as my mind was at the time, I didn’t believe the diagnosis was correct and I had reason to question the competence of the doctor who diagnosed me, despite his impressive qualifications.

Had that turned out to be an accurate diagnosis and prognosis, I am virtually certain that I would have chosen not to live that way.  Not because of the limitations that it imposed – I probably could have adapted to that – but because of the suffering it caused. The pain I was experiencing at the time was almost unendurable and I think it would have been unendurable long term.  But there was something in me that comes from some source that I still don’t understand that wouldn’t allow me to give up. And I clung to a few specific reasons why I was not going to let this thing kill me.

Fortunately, although my symptoms were severe enough to mimic schizophrenia, that was not the underlying cause.  Although diagnoses in the mental health field are of limited value, we’ve settled on Bipolar II with AD(H)D, which is generally more treatable and/or manageable.  But that’s another story.

The Dark Ages came to an end in ’89 when I found the first medication that was effective and the long, slow climb out of the illness began.  I was finally able to return to work full-time in ’94 and had a period of relative health and productivity for a few years, but for complicated reasons, it was not sustainable and another crash came in the 2008 to 2010 range, though it was not nearly as severe.  Since then I’ve been on another slow climb. Even a year ago – In fact, even 3 months ago – I was saying that I was not in immediate danger but my lifetime risk of losing the battle with this condition was very high.

But, now I feel genuinely hopeful again. In the past, after each new round of treatment that seemed to provide a little hope, I would ask, ‘Is this what it’s like to be normal?’ or, ‘Is this what happiness feels like?’.  But after a kind of honeymoon period, it would prove, indeed, to be a real improvement but not a sustainable solution.

I seem to have the right formula now though. I feel ‘normal’ – and even ‘happy’ sometimes – for at least for a few hours a day, and that helps to tank me up to deal with the condition the rest of the time.  I don’t have to ask myself, ‘Is this normal?’ When I’m in that state, it’s self-evident.

Now, I just have a decades-long backlog of accumulated experience to process that’s been on hold while my attention has had to be concentrated entirely on this other little problem.

And I have to figure out what to do with the rest of my life.  And I honestly, really have no idea what to do about that … at present I feel like an almost entirely blank slate as far as the future is concerned.

I’m still scared to death that this isn’t going to last, but I think that’s probably irrational.  Living with a condition like this becomes a kind of lifestyle and breeds an entire worldview and way of coping with life which isn’t easy to change.  It can be hard to adapt even to positive changes in your life.

I hope by next year, I’ll be past that and that the future will be a lot more clear and I can celebrate July 4th as a true Independence day.

The Anti-Food Babe, Cross-Cultural Wisdom, Tolerance and Being an Expat

I’ve been reading Kavin Senapathy for a while, mostly because she’s the Anti-Food Babe.  But I was struck by this article. I’ve added the comment that I left.

Grounded Parents | Go Home Little Terrorist!.

I’ve been living in Europe for the last 17 years. There’s a phenomenon that’s familiar to many expats that for the first couple of years, you go through phases of having your eyes opened about the world beyond your shores. 1) Everything is new and exciting and different! 2) I can’t get Cap’n Crunch and bacon, houses are small, gas is way too expensive! And there are all of these other differences I don’t like. 3) You start to realize there is good and bad at home and abroad and hopefully learn to take the best from both. This takes a couple of *years*. It forces you to recognize that your default values are not universal and forces you to come to terms with other cultures who see things differently. Ideally, you come out of it appreciating the differences and realizing you don’t have a monopoly on the good. And it helps you to better understand the complex dynamics in world affairs and that rest of the world doesn’t see the US as the beacon of pure goodness that many Americans see it as – sometimes for good reason. But it’s not just Americans. All nationalities tend to favor their own perspective. I often say that I think that the world would be a better place if everyone lived outside their own country of origin for at least two years. Maybe people would be more understanding, accepting and balanced in how they understand the world and more likely to cooperate to solve our increasingly complex, globally intertwined problems.

A Day in the Life

This is extracted from an email I wrote to my sister about what is happening in my life as a result of the new medication I have started.  I always face a conundrum when writing about my experience. I want passionately to write about my experience with this condition because it is 1) highly therapeutic for me and 2) I hope it might benefit others struggling with the problem.  But to do so, I have to write about very personal things in a very public way when I, partly because of the nature of the condition, I don’t have a very thick skin. Call it fear of the insensitivity of the public. Whatever. I lean toward doing what is important to me, come what may.

————-

Last Wednesday, I had a particularly good day.  It was a new high-water mark. I felt a kind of ‘normal’ that I don’t remember feeling before.  This probably won’t make sense but I felt ‘whole’ and ‘solid’. I felt a kind of confidence that things were going to work out and that I could solve whatever problems we have.  I literally felt physically like I could stand up to my full height and say, ‘I have done well’, without needing validation. Otherwise, I feel kind of scrunched up. I want to pull into myself like I want to just be invisible.  And I feel the need for constant reassurance. I felt I could see what I’ve been through in a healthy perspective and that I have done remarkably well with what I’ve had to deal with. I was also able to see what living with the depression has done to me psychologically.  I’ve been intending to write a blog post called ‘Depression as a Lifestyle’. It would be along the lines that when you have a debilitating condition it can breed a kind of dependence – despite your best efforts – that it unhealthy and, for someone like me in particular who is ambitious and wants to be productive, very painful and full of conflict, shame, guilt and lots of other stuff.  This high-water mark period happened to overlap with my session with my therapist and I talked to him about it. I always record my sessions and I have that as reference if I need it.

These positive periods only last for a couple of hours at a time right now and a really positive period like that one hasn’t happened again since.  But I know it did, so that is a new reference point. It’s the memory of reference points like that, however rare they’ve been, that has helped keep me alive.

Prior to starting the medication I would wake up early but I was in deep, deep suicidal depression.  If I got up, that would persist for the rest of the day. If I went back to sleep for a couple of hours, I would have intense, technicolor dreams that were very topical to what was going on in my life and actually kind of positive and therapeutic.  Then I would wake up and be relatively stable and able to function somewhat, although it was very difficult. I try to maintain a work-like routine. I do a lot of reading and ‘studying’ as much as I am able and I choose projects that require work-like activities.  But, my concentration and comprehension was so bad that, for example, I would start reading and article and just have to give up after a half a page or so because I just wasn’t getting it. I’d file it in the ‘read later’ folder and hope to come back to it. But that folder just kept getting bigger.  The frustration, anger, pain and discouragement at this was enormous.

Now, with the medication, I’ve set an alarm for the first time in forever.  So, that goes off at 8:30 and I take the medication and then I just lay there and think about the day and witness the miracle while my mood improves and my thinking clears up over the next 15 to 30 minutes.  I actually want to get up and I have a sort of normal energy level. Then I can go about doing things and getting them done in a kind of normal way.

It seems like I’ve needed more rest in the last week though.  But, I have to expect that it’s going to be up and down. That’s what it’s like for everyone, right.  My range is just skewed way into the negative.I’m getting more confident that the medication is going to continue to work.  But it is very scary. As my mind clears up, I can see more and more clearly what the ‘other’ state of mind is like and I just don’t know how I’ve been able to endure it.  And I don’t see how I could go back to that. I really was at the point of running out of reserves again prior to starting the medication. Had, I not started the medication prior to Mom’s death and then David’s suicide, I don’t know if I could have handled it.You might think that I’d be jumping up and down and saying, ‘Yay!  Fantastic! This is wonderful!’ Sometimes I do feel a little bit of that. But, the thing is that because my mind and emotions are working more normally, it enables a lot of stuff to come up that was otherwise buried. My memory improves, for example, so I get bombarded by a lot of very painful memories out of the 30 year backlog I have that I haven’t been able to process and I have to deal with that.  I can think more clearly so I can see more clearly how fragile our life situation is and how uncertain our future is. So, there’s that to deal with. Lots of things like that. I get easily overwhelmed by all of it because my mind doesn’t have the structure yet to break it down into manageable, step by step pieces. But, with help, that’s coming along.

I am cautiously optimistic, at least during those periods when the medication is working.

Does Ritalin Change the Behavior of the Brain’s Stimulus Barrier?

I highly recommend that everyone study a little basic neuroanatomy.  You’ll be amazed at how much insight it gives you, not only into how the brain works but how your mind and emotions work and into the experiences you have every day that you normally take for granted.

For example, did you know that only a small percentage of the input from your senses makes it into the brain?  Most input from the body, eyes and ears is discarded. It’s the job of the thalamus to prioritize this input and decide what gets through.  Here’s an illustration of the Thalamus:

You can see that it is at the top of the spinal cord where it receives the sensory signals from the body.  In addition it receives signals from the retina in the eyes and the cochlea in the ears. It then decides what to do with these signals and selectively sends them on to the relevant brain areas.  Signals from the eyes, for example, are sent on to the visual cortex, which is at the back of the brain. Smell is the only sense that is routed directly into the brain, bypassing the thalamus. Some speculate that this is why smells are so powerful at evoking emotional responses and triggering memories.

But, getting back to how the thalamus regulates sensory input, have you ever wondered how it is that you automatically turn to see what’s happening when you hear a siren or a baby cry?  It’s the thalamus that is involved in deciding that this kind of sound needs immediate attention.

How is this relevant to mental health?

One theory about what goes wrong in various mental health conditions is that there is a problem with the thalamus in that it either doesn’t pass enough information on to the brain or it lets in too much.  The thalamus provides a so-called ‘stimulus barrier’ which, in this case, does not work normally.

Now, this is my own hypothesis, based on my own observation of my own internal experience with my condition.

This is a bit difficult to explain.  To try to understand how this works let’s try a little math.  As stated above, the thalamus only passes a small portion of the signals entering into it on to the brain for further processing.  So, let’s start with the total 100% of the signals coming in through the senses and lets say that a normally functioning thalamus discards 95% of those signals, passing the remainder on to the brain.  So, the brain normally receives only 5% of the total input. That 5% is what the brain normally processes.

Now, let’s say that the thalamus is not working quite right and discards 96% of the input instead of 95%. That’s only a 1% difference and may not seem like it would make much of a difference.  But, how does this affect the amount of information passed on to the brain? Now, instead of receiving 5% of the total input, it’s only receiving 4%. That’s not 1% less, but 20% less than the brain normally receives.  Conversely, if the thalamus discards 94% of the input instead of 95%, that’s only a 1% difference in the stimulus barrier but the brain now receives 6% of the total input instead of 5% or 20% *more* information than normal.

The point is that small changes in the stimulus barrier make much larger differences in what the brain receives and has to process.

This may explain what happens in some mental health conditions.  A large body of experiments has shown, for example, that the brain doesn’t deal well with having inadequate stimulation.  In sensory deprivation experiments, people soon begin even to hallucinate, as if the brain is making things up to compensate for being starved for external stimulation.

And what if there is too much stimulation?

Maybe this accounts for what I experience much of the time.  I am hypersensitive to my environment. I notice every sound.  I have a low tolerance for disorder and clutter. My office is painted in forest green because light colored walls are ‘too bright’.  I generally keep light levels low. Going outside is generally overwhelming. Just too much stimulus. A short walk around the block is usually all I can take.  I prefer overcast days and night time to daylight. Shopping is exhausting. When I try to go to sleep at night, the opaque blinds have to be pulled but even the small amount of light leaking in around the edges is too much.  So, I have a pair of motorcycle goggles that I have blacked out to give me total darkness. I can hear Gail’s every breath. Sometimes I have to wear ear plugs to be able to sleep.

Sometimes even during the day, it gets to be too much.  I have another pair of motorcycle goggles with lenses that have the same prescription as my normal glasses.  They block my peripheral vision, reducing stimulation, and sometimes putting them on is like taking a tranquilizer.  I pull the blinds in my office. I close the door. Sometimes music is helpful. But, sometimes during the day, I get so overstimulated, despite the countermeasures, that I have to go into the bedroom, turn out the lights, put on the goggles, put the ear plugs in, and just lay there in the dark and the quiet until the overstimulation subsides.

Ritalin helps sometimes too.  After the 20 or 30 minutes that it takes to take effect and for the couple of hours that it’s effective, I am much calmer.  The overstimulation subsides and I can function more or less normally. This isn’t what you might expect from a medication that is actually a stimulant.  In fact, it’s chemically similar to cocaine! This is characteristic of the ‘atypical response to stimulants’ that some people like me have who have AD(H)D.  One therapist told me that when a client reports that cocaine calms them down, they screen them for AD(H)D and their response to medication like Ritalin. It’s hypothesized that sometimes people use drugs like cocaine to ‘self-medicate’.

This leads me to hypothesize that Ritalin is affecting the stimulus barrier.  Ritalin *is* a stimulant, but the brain works in complex ways. Maybe Ritalin is stimulating it in a way that adjusts the thalamus so that it discards a little more input than it otherwise would.  So, by nature of how the stimulus barrier works, my brain is getting significantly less input and so it doesn’t have to work so hard just to do it’s normal job.

In this way, Ritalin, rather than inducing a ‘high’, induces a ‘normal’.

It’s a hypothesis that I need to research further …

Boundaries, Constraints, Overhead, Achievement and Health

My life has been overwhelmingly dominated by my mental health condition.  It affects *every* conscious thought and feeling. It affects the pace and organization of my thoughts.  It even affects my physical coordination. It has bounded and constrained everything I’ve experienced and done.

I think that it’s probably hard for healthy people to understand this, but maybe it shouldn’t be.  They are also bounded by their subjective conscious experience. They go where their minds take them, partially carried by subconscious brain activity, which influences us much more than most people are aware of, and partially by conscious choice.  But they are constrained by where their minds allow them to go. They encounter obstacles in much the same way that I do. We all have free will. But, free will does have constraints. We just may not be aware of them consciously.

For the healthy, these constraints are relatively benign boundaries that they encounter at the edges of their experience. They can choose to allow these constraints to limit them or they can choose to challenge them and cross into new territory.  They feel a reasonable and manageable level of anxiety, risk and danger at the boundaries.

I think it’s different for someone like me because the boundaries are higher.  They are more threatening. Crossing them seems more risky and dangerous. And, even though I’m fully conscious that these heightened boundaries are the product of an illness, that doesn’t decrease their level of intensity.  In fact, one of the key characteristics of the condition, in my experience, is that emotions are relatively disconnected from intellect. I can know – with certainty and clarity – that something is not threatening and I can attempt to reason myself through it and it will have no effect on how I feel.

I hope it’s obvious what the potential consequences of this in someones life can be.  Take two people who have the same goals and equal levels of ambition and willingness to take risks.  Now think about the trajectory that their lives might take if their brain delivers to them a conscious experience with differently weighted boundaries.  What is going to happen? It’s a complex question. Some people accomplish *more* because they have greater boundaries to overcome. But at some point, the boundaries can overwhelm anyone’s resources.

Why?  Because achievement requires effort, energy, work.  And, there’s always an element of mental and emotional ‘overhead’.  That’s the part of the effort, energy and work that just goes into managing mental and emotional wear and tear.

What the healthy often don’t realize is that for people like me, the overhead can be much higher.  I mean much, much higher. I believe it can be orders of magnitude higher. The ‘overhead’ can exceeds the resources.  I’ve been there for much of my life. There’s some kind of deeper level of reserves of some kind that you have to tap into in this case, but it too is limited.

So, today I am starting as a volunteer at a Elder Care Facility (Best translation I can come up with for the Dutch Zorghuis voor Ouderen).  For the last couple of years, since my health failed the second time in 2010, my ‘job’ has been getting my mental health condition under control and learning to manage it in a sustainable way.  This the first conventional ‘job’ I’ve attempted since then.

I’m scared.

Should I be?  No. Probably not.  I’m going to be pushing old people around in wheel chairs, for heaven’s sake.

But, what would I be doing if I didn’t have this illness?  I’m a pretty smart and creative guy. Even despite the illness, the highest level of professional success, without college, was as an IT Project Manager for biotech company.  I worked my way up from personal computer technician. Not bad, I think. But that wasn’t sustainable, unfortunately.

It is partially speculation, but had I not had the illness, I think that I almost certainly would have completed a university education with at least an undergraduate degree, but most likely a graduate degree.  That’s if I dropped out to start a company to build iPads or something . In fact, I had just been accepted into the Electrical Engineering program at the University of Utah when my health failed the first time in 1986.

Someone might ask whether there is value in that kind of speculation.  For me there is, because it gives me some insight into what my theoretical capabilities are and as I look to the future it informs my thinking about what ‘subset’ of what I might have accomplished I might still accomplish.

I don’t seem to ever be able to give up on the future … and maybe that’s part of what’s gotten me through this.  I’m only 55, after all.

But because of the elevated, irrational boundaries created by the illness, even simple tasks – like helping elderly people enjoy some time in the open air are dauntingly difficult.

A lot of living with chronic illness is about realistic, often lower, expectations.  And it’s about values. Maybe building iPads isn’t so important. Maybe helping old people is.

Private: The Personal Narrative.

Everyone lives a narrative in their heads, whether they realize it or not.

We have a story that we tell ourselves about our lives that gives it continuity and meaning.

Where there is lack of continuity and meaning we feel distress.

Such a contrast – Draft

My experience with my new medication gives me a perhaps unique – or at least uncommon – opportunity to observe and comment on the difference between a normal state of mind and a depressed state of mind.

Usually, the climb out of depression is slow and gradual.  And, I think, usually people are just glad to be out of it and move on.  They don’t necessarily want to reflect on it.

As for me, I’ve had no choice but to reflect on it because that’s how have I coped and survived.  Had I not deliberately reflected on it, consciously analyzed it and applied my intelligence and talents to developing coping strategies for it, I never would have survived this.  So, after a couple of decades of coping, I’ve catalogued a lot of observations and developed a lot of survival strategies.

I’ve often wondered, if I could push a magic button and make the condition disappear completely and permanently, would I?  When I was in it, I wasn’t sure. The only meaning I could find in my life was in battling the illness. I couldn’t see beyond that and literally couldn’t form a mental picture of a life without it.  I tried to imagine life without the condition as clearly as I could so that I could somehow plot a course to get there but it was as if my brain was incapable of forming those thoughts.

So, now here I am and a ‘magic medication’ pushes that button, at least for brief periods of time and I see the stark contrast between what the Universe looks like with the condition and without.

Now, that I see that, would I push the button and have it gone for good?  Probably yes. The difference is so stark and dramatic in so many large and small ways I would opt for life without this condition.

But, I don’t have that option.  The medication is only a partial solution, at least so far.

First, I can’t be sure it will continue to work.  I’m terrified that I will develop a tolerance for the medication which will require me to take more than I can safely take without dangerous side effects.

Second, when it works it’s only for brief stretches that it’s really optimal.  I mean an hour or two at most. Then the condition starts to creep in again. It’s not always safe or wise just to take more medication.  The roller coaster ride is difficult to deal with.

Part of the reason it’s difficult is that there’s a whole lot of momentum behind the condition after a couple of decades of living with it.  The brain is plastic. The short version is that the number of neurons that we have is more or less set by the time we’re in our mid 20s. There are a few areas of the brain where new neurons form but not that many.  The number of ‘wires’ and connections between neurons is amazing though. There are about 86 billion neurons in the average human brain with 16 billion of those being in the cerebral cortex. But each of those neurons is connected to tens of thousands of others meaning that there are tens of trillions of connections.  And each of those connections is not just an on/off connection like in a computer. It’s very sophisticated and has many states. The total state of the brain is continuously changing. It’s continuously rewiring itself. The wiring of the connections are changing. The characteristics of the connections themselves are continuously changing.

In some ways this is a fast process and in other ways it’s very gradual.  When you learn a new word, for example, there’s a rapid change in your brain’s state that is lasting.  When you’re scared by a loud noise there’s a rapid change but it is probably not lasting. But, other aspects of our conscious experience only shift slowly over time.

Maybe it’s accurate to say that the overall ‘shape’ of our brains changes slowly but the details can change rapidly.

My brain is connected up, over decades, to be depressed and that is going to be slow to change.

But, with the help of the medication, I have the experience of having many details of my experience change suddenly during the periods that the medication is working optimally.  I think this is what I am seeing.

It’s manifest in so many ways that it’s difficult to know where to start to inventory them.

Why is it even important to inventory them?

Because there is great joy in experiencing every one of them while they last and that’s what keeps me going when the effect fades.

So, when I started this post, my mind was is that, more or less optimal state.  I had wanted to go on but that state is already fading and I have to save what’s left for other things that I have to do.  So I’ll have to continue later.

A Really Rough Blog

I have a lot to say.

A lot of it has to do with my journey through life living with Bipolar Disorder and AD(H)D, though I’ll generally be commenting a lot on Life, The Universe and Everything also.

I’d like all my posts to be coherent and polished.  Unfortunately, while my mental health is relatively stable now overall, from day to day and hour to hour and sometimes minute to minute, it’s still highly variable.

When my brain is ‘on’, I have to strike while the iron is hot and generally can’t type fast enough to capture my thoughts as I would like to.  If it stays ‘on’ long enough, I can usually do a decent job of writing a draft and, through review and editing, produce a decent result. But that’s not always the case.  Not even necessarily the majority of the time.

But, It’s more important to me that I try to say what I have to say than that it is polished.

So, you’re going to see a lot of variability in quality.

I hope that, despite that, what I have to say has some value.

I’m going to try to state in the title of the posts what stage the post is in if it’s not final.  If it’s difficult to understand or I’ve made glaring errors or if you want me to elaborate, please let me know.  If you have any questions or topics you’d like me to address, please let me know that too, either in comments or by email.

This is very difficult to do. The more feedback I get – good or bad – the better. I have wanted to do this for a long time. I feel passionate about it. But, it’s a delicate balance. The nature of the writing is that to be effective I have to talk about very personal things when I have a condition that can make me feel very vulnerable. So, where do you draw the line; where do you set boundaries? And, while I’m told I have some writing talent, I’m not an English major and I’m prone to perfectionism, so there’s that …

Reality. Really? A Mental Health Perspective – Really Rough Draft

There’s an old saying that ‘Perception is Reality’.  It’s used in various ways such as explaining differences of opinion between people viewing the same facts.

Perception is also something that is dealt with in any basic psychology text.  It’s the part of the process of creating consciousness where physical reality interfaces with these senses.

The human brain is the most complex structure in the known Universe.  Recently, researchers found a way to accurately count the number of neurons in the brain.  Not really surprisingly, it’s not the even number of 100 billion that’s been tossed around for decades.  That was pretty much a guess. It’s actually about 86 billion. And 16 billion or those are in the cerebral cortex – the rumply part that is largely responsible for making us human.  By comparison, Penelope the cat, who is curled up on my desk next me, has about 1 billion neurons in her cortex.

I’ll take the ‘Perception is Reality’ now and play with it a little.

Do you think there’s a physical reality beyond yourself that is ‘real’?  I do.

Does it depend on or change based on your perception?  I don’t think so.

We all have this complex experience we call ‘consciousness’.  Is it reality? Yes and no.

What do I mean by that?

Let’s frame the ‘Perception is Reality’ statement differently.  Let’s use some modern technological concepts. How about Virtual Reality?  That’s what we, or at least our kids, experience when they are playing video games or when pilots are training in simulators or when Neo is in the Matrix.  The intension is for them to be ‘immersive’. They should provide input to your senses that is sufficiently convincing that you can at least suspend disbelief and think that those worlds are real.

I’m going to suggest that our ‘consciousness’ is a Virtual Reality that our brain creates based on the ‘real’ physical world around us.

Another of my favorite quotes is ‘Reality is an illusion created by a conspiracy of the sense’.  This comes from physicist Roger Penrose.

The fact is that we really only know about the external world through our senses.  But have you thought about this:

As we navigate through our environment, light reaches our eyes a short time after it reflects off of the object we are looking at.  If we were sitting across the table from each other, that’s just a couple of nanoseconds. But if you’re looking at the moon, it’s more like a second and a half.  So, you’re already only getting the ‘raw data’ about the outside world with a delay. It’s already in the past.

Then that raw data has to be processed by the brain.  That takes time in the tens of milliseconds range before you experience it consciously.  So, you are still further in the past.

Next, the eyes aren’t just cameras that project images into your consciousness.  Vision is an amazingly complex with layers of different kinds of processing for color, shape, detecting edges, recognizing motion and more.

One aspect of it that fascinates me is that color isn’t real.  It’s just electromagnetic waves with different frequencies. In fact our eyes can only detect a tiny range of the electromagnetic spectrum.  This corresponds roughly to the colors in the rainbow. But what I find most interesting is that only the ‘colors’ of the rainbow are ‘real’.  The rainbow doesn’t really have colors. The brain assigns those colors to the frequencies in the rainbow and that’s what we ‘see’ in our minds.  But what that means is that all other colors, shades and hues are produced entirely by the brain from combinations of the colors in the rainbow. They are the products of additional levels of processing and interpretation made by our brains after the raw frequencies strike the retina.  Objects in nature do not have instrinsic color at all.

The same applies to all the senses.  What we see, hear, taste, feel … all of it is not reality.  It’s all a Virtual Reality created by our brain. Our consciousness is a time-delayed Virtual Reality drawn from the external physical reality that we live in.

So, how does this apply to mental health issues?

The average, health well-adjust person probably never thinks much about the above.  Roses are red and cold is cold and they don’t think anything of it. Their brains interact with the environment to deliver a conscious Virtual Reality to them that is mapped to physical reality in a reliable way that allows them to navigate through physical reality, adapt to it, make decisions based on it, etc.  This mapping is stable and reliable. There’s rarely a need to question whether this mapping of the conscious Virtual Reality is an accurate, reliable, predictable and useful representation of the outside world.

But where there are mental health problems this is not the case.  In my view, the essence of mental health problems is that the conscious Virtual Reality is distorted.  It’s not a reliable, accurate or predictable and therefore it’s not as useful to the sufferer as that of a healthy person is to them.

There is a disconnect between the outside world and the Virtual Reality within.

Depending on the nature of the disconnect, the degree of distortion and the nature of the distortion, this disturbance in the sufferers Virtual Reality can make one’s conscious experience very difficult to live in and make it very hard to function in the external world.

In severe cases, this distorted Virtual Reality can be so distorted that it creates the worst kind of human suffering and can render a person unable to function normally at all.

To some people with this kind of distortion, the mapping to the external reality breaks entirely and their Virtual Reality becomestheir reality.

For others, they are aware that their Virtual Reality is distorted but they have insight into how it is distorted so that they can find ways of compensating for it.  But this creates extra overhead for them that healthy people don’t have. This can very stressful, difficult and draining.

For others, like myself, most of my life, the distortion is sufficient that, although I have had insight into how it is distorted, it has not been clear enough to fully compensate for it.  The extra overhead was so great that to maintain any kind of normal level of functioning was too draining to be sustainable.

I have often thought, especially through the worst periods, that it would might be easier to just surrender to the distorted Virtual Reality and not try to compensate and just try to find a way to live within it.  But, for mutliple reasons, I just couldn’t do that, among them, that it would have meant not being able to take care of myself or my loved ones, being dependent on the kindness of others and society and finally, I felt that if I let go, it would be a one-way trip with no hope for return.  Finally, for me, it would still not have been sustainable and I would have ultimately lost the battle and ended my life. I couldn’t accept that.

But, it’s been very hard.  The worst periods have been when I’ve known that a physical reality exists beyond myself, I’ve had some insight into what a healthy Virtual Reality is like, I’ve known what mine is like, I can see the difference and I can’t do anything about it.

From Facebook Following the Death of Robin Williams

My sister shared this with me and here are my comments in addition to it. I’ve avoided saying anything until now because I was afraid that I would be coopting the Williams family tragedy with my own stuff. But this is too good and maybe it will help someone understand this difficult subject

That brought tears to my eyes. That’s exactly what it’s like. I’ve been trying to figure out how to explain this. I have wanted to share it with everyone. It’s not that you choose to commit suicide. It’s that everything in your mind and your emotions is screaming that this is the best and right thing to do and you just can’t think any more of any reason not to because you’re exhausted and you can’t think clearly anymore and you just can’t think anymore about anything else. Your mental world shrinks to the point where there is nothing but the pain and a way out. You’re virtually blind to everything else. You don’t feel any joy or feel any pleasure or find any source of inspiration or peace in anything. You just feel hopelessness and despair and you feel disconnected from everything. You ‘know’ in your mind that people love you but you can’t ‘feel’ it and so it doesn’t provide strength and support and I think that is a difficult concept for most people to understand who haven’t experienced it. And you literally feel like it’s always been this way and you’re deluding yourself to think that it hasn’t. And you feel like it’s always going to be this way. You’re only going to be able to distract yourself from it with whatever obsessive behavior you’ve developed to accomplish that. But it’s only a distraction and the pain is always there underneath it and when the distraction is not there you are completely naked and defenseless against all its relentless, impersonal fury.

There was a time when I literally thought that I was defective, like a factory second and the Universe wanted me dead. It wanted me removed from the gene pool. I was a liability to it and it didn’t want me consuming any more resources. And no one is going to miss me and they’re better off without me anyway. So, who was I to keep resisting? I literally had an item on my to do list once, ‘Check to see if life insurance has a suicide clause. Gail will be able to start over’. I’ve felt that way to one degree or another since at least 1979.

But somehow there has always been this tiny little voice that said, as persuasively real as this seems to be, I choose to believe that it is an illusion. Why would my mind and my brain do this to me? I don’t know, but I refuse to believe it is real and I won’t give into it, no matter what. But, I couldn’t have held out forever.

I don’t know where that voice comes from.

I think one thing that compounds the problem is that you don’t want to talk about it; not because you don’t think people want to help but because they don’t know how to help. They say things that are not helpful and even harmful and you just can’t handle the pain of feeling so alone with something that no one can do anything about. But the self-preservation instinct is still there and it feels safer to say nothing and think that maybe someday, somewhere I’ll find someone I can talk to or some other source of healing, than to talk to people about it and be disappointed.

That’s part of the reason that we call it a disease. This is not rational thinking. Something is causing you to think things that you would not normally think, even in a time of stress.

So, when you have that kind of treatment-resistant depression you think: What’s the point of seeking treatment or support?

The best thing you can do for someone, is just to be *unconditionally* involved in their lives. A person in this situation needs to know that you will be there *no matter what*. I think most of us who suffer this know that you can’t be there 24/7 and that you need a break on a regular basis. But we need to know that there is a lifeline we can count on. And you need to be pro-active about it and not wait until it builds up into a crisis. There usually are things that you can do that will make a difference and make a dent in it, until hopefully, gradually someone can, by their own internal efforts and through treatment, find a way to get out of it. But it requires determination, dedication, creativity and resourcefulness to figure out what those things are.

But the reality is that while many people do respond to support or therapy or medication or other kinds of treatment, some don’t respond to any kind of treatment, regardless of its quality or their own efforts. Then it gets very difficult for the sufferer and those around them.

Lately, I’ve been thinking that my life is divided into two phases: the one where I am depressed but hopeful that it will improve and the other when I am depressed and have no hope that it will improve. The latter state is the risky one. Fortunately, so far, and more and more, the former state has prevailed. I hope that becomes the rule.

Ironically, some people think that suicide is an act of cowardice. The real cowardice is that, in my opinion and in many cases, people around the sufferer and in society in general, turn a blind eye to depression and suicide and do not fully engage in helping. This illness is so common and under-diagnosed that *I guarantee you* that you know someone who is in it. There’s no lack of resources out there for understanding this problem and providing support.

But the thing is that this is not confined to this illness. The principles underlying helping someone with depression are not that different from those underlying supporting someone with any other kind of serious illness. You just have to first recognize and fully acknowledge that it is an *illness*, a serious one, a potentially fatal one like cancer or heart disease. It’s just that this illness has no external signs and you can’t see it on a medical test.

But the reality is that it does. With my extensive experience with it, I feel like I can look around and see it on people’s faces and in their eyes and in their posture and body language and the way they speak and conduct their lives. And there are other signs if you learn to recognize them.

For me, suicide is still a risk. I’ve become kind of philosophical about it. It’s no different than having some other potentially fatal illness. If you have cancer, your doctor is likely to give you a statistic for the five year survival rate for whatever variety you have. Well, the lifetime mortality rate (risk of suicide) for someone with Bipolar disorder is 25%.

It’s far better now than it once was. But I still frequently have periods where, if they were to persist, it would be quite impossible to hang on. But I do, somehow and I keep seeking better treatment and keep finding better ways to cope and I hope this is helpful to someone.

The Loss of Robin Williams

 was deeply saddened and disturbed by the loss of Robin Williams.  It’s going to take a while to adapt to it. I’ve known for years that he suffered from addiction and depression of some kind but I never expected it would take this turn.

I just read an article (1) talking about how there’s always a spike in suicides after a high-profile celebrity suicide, and this is about as high profile as it gets. Another article commented about how this is the first high-profile suicide in the era of social media (2) so the flow of information has been quite different than in the one-directional, news source to audience past.  I’m encouraged that the content of the commentary has almost universally been one of understanding that depression is an illness and that suicide is sometimes a symptom of it. This is in stark contrast to the more judgmental tone that there has been in the past, that it is a sign of weakness, or a character flaw or even, by those who are religiously inclined, a result of sin, which, in my opinion, is the most insidious, if not downright evil, explanation.

I’ve often wished that there was a pill I could give someone that would cause them to experience depression temporarily.  I’m convinced that just 5 minutes would be enough for the average person to understand how debilitating and dangerous this illness is.  The statistics are staggering. Even I was stunned when I read this from the World Health Organization recently: ‘Depression is the leading cause of disability worldwide, and is a major contributor to the global burden of disease.’ (3)  People just don’t realize how common, under-diagnosed and damaging to people’s lives and to society this is. And this is tragic considering that for many people it is easily treated, especially if recognized early.

But, other than experiencing it somehow first-hand, there are other ways to communicate it that seem to help people to understand and encourage compassionate support to those who are ill.  This devastating loss provides just one more reason for me to try.

1) Upworthy: We Need To Talk About The Way We Talk About Robin Williams’ Suicide

(2) Mashable – Finally, We’re Talking About Mental Illness Like Adults

(3) World Health Organization – Fact Sheet – Depression

Het is so ver

Or so the Dutch say in my adopted country of The Netherlands.  It means, ‘Something important is ready to happen.’ And so it is that I just start writing.  I’ve intended to do this for a very long time but various things have held me back. Fears and doubts of all kinds.  That’s a particular issue with me. I don’t deal with exposure easily. I feel terribly vulnerable even in ordinary, everyday human exchanges.  Talking to the cashier at the grocery store is awkward and painful. Even talking to the techie salesman at the computer store, where I know a thing or two, is difficult.

And here I am proposing to expose myself to the whole world.  Not that what I have to say might even attract much attention.  But it’s possible. When kitten videos spread like viruses, anything can.

So, if it’s so hard, why do this at all?

Well, I just can’t help it.  I don’t know if I have anything valuable to say, but I think I do and the only way to know is to try … and deal with the consequences, whether they are friendly, critical, kind or mean.  The Internet is such a rich resource for nearly everyone. But can also be such a harsh wasteland.

All I can do is try.

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