Description

This blog is part of a larger collection of blogs of open letters to people recovering from mental illness. Tony is a composite young man who is very sick and in the early stages of recovery. The home page to these blogs can be found on http://beyondmentalillness.blogspot.com.


Monday, December 19, 2011

12/19/11

Dear Tony,

Focus on moving ahead in one small step. Don't think any further than that step.

Try not to think about failure, either.

In my experience, very few efforts completely fail. If you try, you will often go forward, even if it is not as far as you would like. You might stumble a little but still end up ahead. Or sometimes when I tried I improved but not in the area I had hoped. That can be very annoying, especially if I needed to change certain things, but it is still an improvement.

If you try and are overwhelmed, stop. Most likely you tried to do too much. I say again and again to go in small steps, but figuring out the details of that can be very challenging. If you start to relapse back off. Later on, try to figure out what went wrong. Maybe you need to go a little slower. Also, if your outside life is stressful you might need to stop trying to change yourself. Often, it is overwhelming to deal with internal change as you are dealing with external stress. You just need to cope as best as you can until your life settles down more.

But even if you do fail, you will still learn about yourself and what you can and can not do. That is an improvement in itself.

Sunday, December 4, 2011

12/4/11

Dear Tony,

There was an article recently in The New York Times asking if it is worthwhile to try to find meaning in a person's delusions and hallilucinations. Most doctors say no. But some people who are successfully living with mental illness are saying yes. Here is the link to the article: http://www.nytimes.com/2011/11/26/health/man-uses-his-schizophrenia-to-gather-clues-for-daily-living.html?_r=1&scp=1&sq=living%20with%20mental%20illness&st=cse

I say yes. These thoughts are coming from your brain; they are coming from things you have previously thought or experienced. They are not coming out in a form which is logical or culturally appropriate or easily understandable. But they are coming from you and your past experiences. They mean something.

That does not mean that every thought is worth analyzing. Our thoughts become mixed with each other; you may have appropriate reactions to past experiences at inappropriate times. But overall, I have seen a general pattern with myself. I have recurring memories of being exploited during times when I feel I am being exploited. I have flashbacks of episodes when I could not assert myself during present-day situations when I am unable to assert myself. They do not always come out neatly. Sometimes I am just annoyed for some other reason (e.g., I'm hungry or too tired). But over time I have seen a general pattern.

I would suggest focusing on the thoughts you keep having. Memories you can't rid yourself of, especially if the incident was trivial. It means something. There is something behind it.

Sunday, November 20, 2011

11/20/11

Dear Tony,

How do you choose where to begin? It admittedly can be very tricky.

I've said it before: Start with what you can do, not what you most need.
That sometimes can be difficult to figure out.
Any positive change is a step in the right direction. If you had skills which you lost in the last several months, try to start there. It is often easier to re-gain skills. Somehow our subconscious seems to hold on to them for a while.
Another possibility is to look at something you already do well and try to make it still better. That might be difficult to do when you have other problems. But it is still a positive change, and every positive change is good.

The most important piece is not the change itself. It is learning how to make changes and adjust yourself to changes. That may well be the most difficult skill you ever need to learn. But once you learn how to make your life better your life will become better. No matter how small the changes are.

Sunday, November 13, 2011

11/13/11

Dear Tony,

I want to remind you that you need to go one step at a time.

I have come a long way since I was hospitalized. But I needed to do it piece by piece. If I tried to go too far, I would crumble.  Recovering from mental illness is about a million small steps. In my expeience, there are very few big steps.

I think of it as building a foundation. When you are building anything, literally or figuratively, you build one brick, one nail, one small piece bit by bit.

You can do impressive things, but you need to do them a little at a time.

Tuesday, November 1, 2011

11/1/11

Dear Tony,
I want to expand on what I wrote in the last post about having feelings.

The first feeling you have is pain. That is to be expected. I have really genuinely had some very bad things happen to me, and I would bet you have, too. Of course you feel pain. It would not be healthy to suffer and not feel pain. As I said, pain can sometimes be a good thing. It means that you are still able to have feelings. Some of the sickest people just go numb.

Once you start having feelings they come in out of control. They can come flooding back. There could be a minor feeling about a minor upset that just refuses to leave. They become mixed with each other. For a long time, I would focus and emphasize with small issues while ignoring larger ones. No one has been able to adequately explain feelings. Every conscious human being sometimes wishes s/he had the capacity to turn his/her feelings on and off the way we turn a television on and off. We don’t have that capacity.

When my feelings started flooding me, I had to sort it out. This took just about every spare minute I had (and then some). I had to consider, dwell on, and analyze every feeling which I had. This was not because I really believed every feeling I had deserved such contemplation and expression. I simply lacked any sort of triage system.

I was eventually able to understand, and start to triage most of my feelings. I know I could not have done it without all the contemplation. There are no shortcuts to that I can suggest. It was definitely worth it, and it was definitely necessary to my recovery. But it was very laborious.

Monday, October 31, 2011

10/31/11

Dear Tony,

In pieces of these blogs, I will tell you directly what has worked for me. Most of my treatment is based on Bruce Perry’s ideas. All I know is what worked for me. They are not intended to be general. They are simply suggestions.

Dr. Perry would say that one critical piece in my treatment was that I was about two-and-a-half when these traumas started happening. (There were multiple changes at once — my illness was the largest, but there was a number of other factors.) That meant that my brain and development had the chance to have a good start. If I had become ill when I was six months old I would have likely had very different problems. Most of his book focuses on children who were traumatized at a younger age. Dr. Perry gave me the essential philisophical underpinning, but I was on my own to devise specific strategies.

My first strategy was for a problem I have described earlier: my inability to communicate effectively. That was at the time my most critical problem. My difficulties communicating had landed me into extremely uncomfortable and sometimes even dangerous situations. I tried to think of what young children do and what I missed. Young children struggle to communicate. They focus only on learning to communicate, and often make mistakes with wording, tone of voice, or volume. Which was basically what I needed to do.

I don’t have much experience with children. I have a younger sibling and my mother is an elementary school teacher. Much of what I used is based on stereotypes and my own vague memories. While stereotypes are problematic, it was enough to give me a start.

Another stereotypical young-child activity which helped me is to watch the same television show again and again and ask for the same bedtime story again and again. I started doing that without realizing it, and eventually was focusing on it. I can feel the changes in my own brain. It has to do with moving beyond understanding information told to me directly to picking up cues and subtle hints from the broader culture. I have always had difficulty with that. You need some sort of template in place to do that, and I was lacking one.

I worked with the first season of ER, something which I had rarely watched when it was originally aired. I focused on television strictly for practical reasons: It is much faster to watch the same forty-five minute television show again and again than it is to read the same two hundred page novel again and again. I watched one specific episode over and over again, and eventually was able to figure out what was happening and how people’s words and actions led to different outcomes. It helped me learn to sort out what I do and do not need to pay attention to. I gradually learned to identify what was important and how one specific incident led to another. All of these were things I was not able to do before. If asked, I could explain the meaning of one specific scene, but I could not figure out how that scene connected to those before and after it. I gradually grew able to understand how different interactions worked together.

Although I did not know it at the time, ER was a really good choice because it focuses on multiple characters and on-going situations. Once I had the basic template from one episode in place I was able to follow the different story lines to other episodes. I needed to watch each episode at least twice — and some I watched more than ten times — but slowly I was able to build my capacity to follow different characters and story lines and see how they related to specific incidents.

One final note: I am not advertising ER. It benefited me because it was a longer show (a half-hour sitcom was too short to push me) and had multiple on-going story lines. I think another reason ER worked well for me was because I could remember some of the details people discussed when it was aired and some scenes which I could not understand back then. It was a great thrill to be able to put those memories in context at long last. I later tried to do the same thing with the first season of The West Wing, which meets all the above criteria but aired when I was out of the country. I thought I would enjoy the show, but I just could not become interested. At least for me, it seems that connecting my actions with ancient memories is a critical piece.

10/31/11

Dear Tony,

Do the best you can.

Don’t strain yourself. Making these changes and trying things that you haven’t done in a long time (or never before) is enormously stressful. If you add to that by demanding that you reach certain limits, routinely do something at a specified time or for a certain length of time, you are going to burn out.

A large part of this is discovering what you can do, what your limits really are. People’s limits change from day to day (sometimes from minute to minute), are sensitive to moods and outside events, and frequently are not known in the beginning. People recovering from mental illness are even more sensitive to such issues. Your best work today may not be your best work tomorrow or the day after. Do the best you can at any certain point. Concentrate your efforts on not pushing too far and not burning out.

10/31/11

Dear Tony,

To start, work on one thing. Only one.

Look at yourself honestly and figure out something you can do. It may not be what you most need. I need to emphasize that: Start with what you can do, not what you most need.

For me, I needed to learn to communicate. For most of my life I could not express myself in a way that people could understand. I could not figure out the rhythms. I would explain too little, and people would misunderstand. I would say too much, and people would not be able to follow along. To converse, you need to tailor what you say to the other person. You need to follow cues about what s/he is thinking and feeling. All of that was way ahead of me. Like many people with mental illness, I had difficulty making friends. Even more important, more than once I was seriously harrassed and could not report it because I could not communicate.

To improve my communication skills I needed to focus on just putting my thoughts into words. Only that. Not eye contact. Not my volume or tone of voice. Not my body language. I needed to go back and work on the basics of communication.

That was the only thing that worked for me. After a while I was able to work on eye contact and my other issues. It took a while to reach that point. But I did learn to communicate better.

Sunday, October 23, 2011

10/23/11

Dear Tony,

In order to improve, you need to figure out what you really need.

I attached a recommended reading list to the original page:  http://beyondmentalillness.blogspot.com. My most recommended books are the ones by Bruce Perry, a child psychiatrist. His ideas have formed the basis of my own treatment. To grossly simplify his theories, if a child has a trauma at a young age it does not necessarily matter what they consciously remember or how they feel about it years later. If a child has a trauma before the age of five, when the brain is still forming, and essentially does not have the opportunity to run around and explore the world and act like a child, it can affect the way the brain forms. That can affect things later, even if the child receives good care afterward.

I had a severe physical illness just before I turned three. Dr. Perry blasts many professionals for not recognizing the effects early trauma can have on people. In my case, most people did sort of suspect that my illness was at the root of my problems, but no one could really figure it out.

According to Dr. Perry, people in that situation need stimulation and skill-building aimed at the age they missed it, not their current chronological age. In my case, I needed to figure out what skills I had missed and come up with ways to obtain them. That has been the most helpful approach I have encountered in my life. I needed to build skills one at a time, and it took a while. I am still working on some of the more advanced skills. I will write more about some of the details of what I did later. For now — read the books.

10/23/11

This letter was originally written the week Osama bin Ladin was killed:

Dear Tony,

I will admit that the events going on in the outside world can leave us shaken.

We build a foundation very slowly, piece by piece, around our understanding of the outside world. A surprise announcement like the one we had this week — even good news — can seriously disrupt that foundation.

Many people would admit to some of the same feelings, but I think some of our feelings are stronger. One of the central tenets of mental illness is an inability to handle and process our feelings appropriately. We work on building that, but sudden events can throw them out of control.

That being said, there is not a lot of advice I have. Except to be aware of it, and realize that it might affect your mood and energy for a while. You might need to make some accomodations for that. I cope by reading as much as I can handle about the subject. Some people I know cope by shutting the news out as much as possible. I am not advocating either method. I am just letting you know.

10/23/11

Dear Tony,

One point which is both very difficult and very important is not to think too far ahead.

In her book Nadia Comaneci said that when she was growing up and training for the Olympics her dreams were of obtaining new skills. She never saw the larger picture of fame and fortune. Admittedly, she grew up in strict conditions in a Communist country. Those conditions can’t and probably shouldn’t be replicated in this area today. But I have found that idea of simply focusing on the next few steps, of imagining and fantasizing of building new skills, to be very helpful.

We can only go one step at a time, and (at least at the beginning) I could only work on one thing at a time. Thinking too far in the future can be discouraging as you realize how far away it is. Certainly don’t give up on your dreams. But put them away for now. Focus on what you can do. Try to direct your thoughts as much as possible on the next few steps.

Wednesday, October 19, 2011

10/19/11

Dear Tony,

The leader of my Toastmaster’s group characterizes the club as “a comfortable place to try uncomfortable things.”

That is critically important. And often overlooked.

When you are doing something uncomfortable (which, when you are starting out, probably means any new step), you need to make the rest of your life as comfortable as you can. That means anything you can reasonably control — physical space, time of day, food, noise, etc. Trying a new step is difficult enough. Trying a new step on top of dealing with normal annoyances is usually overwhelming.

For me, it helps to choose the exact time and place and plan the details in advance. If something goes awry, I will reschedule. But I plan exactly what I am going to do before, during, and after the step.

When I am starting, I can’t compensate. If things don’t go as planned, I usually need to wait. When I am just starting out, I completely lack flexibility. When I have done the step a few times and are more used to it, then I can begin to tolerate some variations or surprises. But when I am starting it needs to go exactly as planned.

After I finish that first step I am usually exhausted. No matter how small the step is. I need to relax and do something to reward myself. I need to recognize that these changes are difficult and I need to make other accomodations in my life.

Change is not easy. But it is possible.

Monday, October 10, 2011

10/2/11

Dear Tony,

I am sorry your life has been so difficult lately. I am sorry to hear that you have had so much trouble.
I have been psychiatrically ill in the past, and I hope I can help you. I would like to discuss some of my own experiences growing and staying better.

The first thing to realize is you can grow better. You can improve. Virtually anyone not in a coma can make his or her life better. There are things you can do.

But it has to come from you. Your family, your doctors and counselors, and anyone else who cares about you can help you with this. But the decisions about what to do and how to improve yourself must come from within you.

Try to figure out something you can do. It is probably not a big thing. That's okay. Even making a list or writing something down can be a step in the right direction.

Once you start, you will begin to see more and more things you can do to grow better. But the important thing is to start. After that it will grow easier.