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the road to recovery for families
“What A Life Can Be: One Therapist’s Take on Schizo-affective Disorder”
by Carolyn Dobbins PhD
Excerpt contributed by BridgeRoss Communications Publishing
Dr. Carolyn Dobbins struggles with schizo-affective disorder and after a 25 year career as a successful therapist, admits that she suffers with this disease.
The book chronicles her descent into madness, homelessness and jail and her struggles to obtain a PhD from Vanderbilt in clinical psychology.
“It will challenge your thinking about mental illness, about hope, about faith, about who you are.” George E Doebler, M. Div. Special Advisor, U of Tennessee Medical Center:, Executive Director, emeritus: Association of Mental Health Clergy (now Association of Professional Chaplains).
Excerpt:
THE SIX A’S OF SELF-HELP
There are many suggestions I have when it comes to helping you deal with a mental illness and a “chemical imbalance” in particular. I am basing my suggestions on what seems to have helped me and what I have learned as a psychologist and therapist. I share what I know of myself as examples of what you might do when mental illness happens in you and your life. I do this with patients in mind. However, families and professionals might gain from my effort as well. These six A’s of self-help are as follows: Awareness, Affirmation, Activity, Acknowledgment, Anonymity and Acceptance.
Awareness:
I realized early on that I was “different,” and I became particularly aware of this when I started becoming ill at age 16. People were calling me “weird,” and I didn’t know what to say or do. Sleep patterns, eating habits and my overall behavior felt out of control. I tried to understand myself. I continued to try to increase my self-awareness, awareness of others, awareness of my immediate environment and awareness of society – all leading to what I could change or do differently to make my life for me and others more manageable.
When I was 16 years old, I had a coach who was big on carbohydrates. Whereas a high carbohydrate diet was supposed to boost our energy, I found myself feeling sluggish, heavy and sleeping too much. My performance went downhill, and it was a shabby existence that turned worse. As I became aware of such symptoms, which I would later identify as depression, I also became aware that others were talking about me – some people were worried about me – and there was not a whole lot I or anyone else could do. I felt trapped.
In the throes of initial symptoms of mental illness, not much of anything helped. I understood, deep down, that something serious was going on. Yet I felt helpless. As time went on and as more symptoms arose, I could see that whatever I had walked into did not involve ever going back. I identified a whole host of glaring symptoms that tampered with any kind of life worth living.
By the time I was 21 years old, I was aware enough to know that I had a serious mental illness, one that would probably sideline me for life. My symptoms, which I primarily and reluctantly identified in my Abnormal Psychology class, included hallucinations, delusions, scattered thoughts, trouble expressing myself verbally, erratic sleep patterns, paranoia, mood swings, confusion, difficulty eating, not knowing what foods were right for me and anxiety.
I also knew that many people didn’t and don’t understand me. That’s okay. Enough people did and do – enough people were there to help me and continue to do so. I made a decision to allow all experiences to teach me and help me live my life with my disorder. So in many ways, I have become an expert on being me, which isn’t easy. I also have grown through the years as a person, and I’m not all that different from most people when my disorder is not active. People who know me well tell me that they would never know that I have this disorder if they were to see me for the first time today.
I have, at times, considered taking my own life. I didn’t really want to do that. I just didn’t see any relief, ever. I have learned that time alone can help. Things can change; things can happen around us that help our lives come together, even when we don’t see it. It’s imperative to allow for this, because there’s no going back. In other words, we are not always aware of other workings in the bigger picture, workings I call faith and hope.
In having a brain disorder, I realize that my disorder is a what. I, myself, am a who. Even with symptoms involving my thoughts and moods, it is my opinion that it is still a medical disorder. And I still have a personality that is unique. We all do. I’m told the following things often: I’m honest, compassionate, forgiving, highly intelligent, insightful, patient, unwilling to give up, and tough on adversity. I’ll go that extra mile for just about anyone. My friend Karen said something about me recently. She said that it’s my kindness that stands out above anything else. I said, “How can you say that? I’m a type of genius.” She said, “I know, but it’s still your kindness that stands out.” Another friend also said this exact thing. I was shocked, because I don’t think of myself as all that kind – certainly not that kind.
I tend to be more aware of my character flaws than my attributes. I’m hard on myself, have done too much for people, often think the worst, feel like a second-class citizen, can be too sensitive, think people don’t like me, am sometimes angry, hurt and scared when there’s no point in being so. Some of my character flaws, I believe, stem from living in this society with my disorder.
My desire to help people, to be kind, and to strive for fairness are all attributes that still exist when my disorder is superimposed upon these traits. For example, when I’m disordered, I want to get all starving kids milk, pass out fliers to help increase mental health conscientiousness, help inform people of an approaching tidal wave, make sure no one steps on my soul and set up an underground to help the mentally ill who are treated badly. My ideas and good intentions, which are part of who I am, are sound. It’s just that my disorder imprints symptoms on my personality.
I have also become aware of other things about my disorder when left untreated: it is chronic; it leaves me vulnerable, a potential victim of crime and unable to care for myself; I shouldn’t drive or try to go anywhere or do much of anything; I tend to want to self-medicate with beer; professionals look at me and minimize its nature. I have also become aware of ‘red flags’ – symptoms that suggest I need to take a look at my medication and dosages. These include fitful sleep, talking too much, pressured speech, flipping my days and nights, thinking too much, trouble focusing and remembering, confusion, hearing sounds and seeing things that aren’t present, agitation. Over the years, I have become much more aware of initial symptoms and not letting things get out of hand.
It became vital for me to be able to explain myself to my psychiatrist in order to make him aware of what was going on with me. Outsiders, even trained professionals, do not always recognize when a patient starts getting into trouble until it’s too late. Both a psychiatrist and therapist can be immensely instrumental in helping you learn about yourself and your disorder. This awareness can provide some sense of mastery and make life safer and disorders more treatable.
It is also important to become aware of your environment. Whenever I change locations, I know I need to find my way around. Any transition can be stressful for a number of reasons. I remember feeling overwhelmed at times with the simple task of punching in a new pin number at a pharmacy. I am also not sure how friendly people would be if I were to get confused and need help when out and about.
I’ve learned to take cues from others – sometimes people’s reactions to me are the only clues to what’s going on with me. For example, I might have trouble explaining an idea, and when someone else seems confused, I’m often determined to try harder and think things through. (For the longest time, when I was first ill, I practiced everything in my mind before saying it.) At other times, I think to myself, “I need to go home and get through these moments.” I’m aware that, with many symptoms, time helps. I know how important it is, however, not to leave things to time when I feel certain ways – I might need to eat, to rest, to retreat to my room, take more of a medication, and hang on.
When getting used to new medication, whenever there’s a change in medication, I pay as close attention as possible to any change in me. I need to be able to communicate what I experience to my treatment team. My anxiety is typically higher during these times, and so I expect that and tell myself to hang in there. I also try not to be too aware of details that aren’t important.
Awareness is an essential part of monitoring how and what I’m doing, both from moment to moment and in general. It is a phenomenon that is always developing and is a necessary part of overcoming and living with a “chemical imbalance”. And let’s not forget, some things are confusing, hard to remember…and anyone can show certain symptoms when stressed or just having a bad day!
Affirmation:
I have stated that my disorder is a what, not a who. An affirmation is a statement about who I am. It’s meant to be positive and upbeat, something I can invent and learn to believe about myself. This is particularly important when it comes to “chemical imbalances” because there is prejudice toward the mentally ill and because the mentally ill often feel negative toward themselves. I tell myself daily, “I like me. I love me. I can make it.” This felt awkward to me at first, but this kind of self-talk backed by a determination to be my best friend has helped me immensely.
My self-esteem took a beating when I first became ill, if only because my body was sidelined. I could not do what I had been doing, and I was afraid. It also seemed that others lost respect for me, ignored me and talked behind my back. I journaled frenziedly, telling myself to hang in there. Writing affirmations can be helpful. I often ask clients to draw and write affirmations on poster boards and put them on their bathroom mirrors. Sometimes I look at myself in my bathroom mirror and tell myself I can make it. It may seem uncomfortable or even stupid at first, but it can help.
As my illness progressed and I became aware of what I was up against, I began developing a sense of self-respect that is hard to explain. I could tell that my illness was not my fault or anyone else’s, for that matter. My disorder became my challenge – what was I going to be faced with today, every morning, every night? What was it that I was asking of myself? I was asking for one simple thing – to do my best. And when I sometimes lost my footing and saw no hope, there was always someone in my life who affirmed my presence, my right to breathe, to stay in the fight.
Once I recognized the seriousness and severity of my disorder, my goals and values changed. Instead of determining that my disorder was forever disrupting my goals, I saw my disorder as my guide toward learning what I could and could not do. It was just a matter of locking in and trying some things until I met up with “defeat” and adjusted accordingly. Instead of grieving some loss such as sleep trouble in facing medical school, I said, “Okay, I can’t do that. Learn and move on.” I seem to constantly affirm the idea of finding my niche, having a place in life.
I sometimes chuckle about a social worker intern who admitted me to a psychiatric unit and asked me my religion. I told him that I was spiritual, and he said there was no box for that. I told him to make a box for spiritual. I do that every day – when I cannot find a place to exist, I make a place. When you get right down to it, my deepest and most important affirmation is: I like myself, I love myself, and I can make it. When I start feeling there’s no light at the end of the tunnel, I remind myself as best I can that it’s going to take me shining my light forward. Be your own light, shine your way forward to a better life.
Activity:
At times, my fears have immobilized me. There have been times when I thought no thoughts, felt no feelings, and remained motionless. I know of days when my racing, broken mind overwhelmed me to my wit’s end. I remember waking up and not caring if my bed burned to the ground – with me in it.
Momentum helps, it seems. If I can get going, I might stay going. I let my life pass me by for only a moment. I have to face my day, even if that only means clutching a mattress and rolling over every few moments. My connections to the moving world can be sparse, especially when I’ve crashed and burned. Being disordered is exhausting.
I try to get up and go to group or work, depending where I’m at. I try to talk. Words come out in the wrong order. I keep trying. I read self-help books. I push myself spiritually. I commit to a partnership with my psychiatrist and explain my symptoms as best I can. I show up for therapy. I don’t allow others to define me. I keep track of food. I learn what to eat and when to eat and how much to eat and what food helps with what symptoms. I exercise. When I feel stuck, I try my best to change things up! Do something different, try to find what works when! I mess with my chemistry with food, exercise and sleep schedules, in often desperate efforts to get out of the mess my disorder has me in. I talk about these things with my psychiatrist. And I ride that bronco ’til it throws me. When it does, I dust myself off and get back on. More than anything, I tell myself that I belong on this earth, and I need to see myself through.
Staying active is one thing, but not everyone who is mentally ill is capable of employment. Staying symptom-free is not easy. There may be some kind of work, however, that you can do – flexible volunteer work, for example. It’s also possible that a person with a “chemical imbalance” can work around illness with an employer. Taking college or on-line classes are possibilities as well. Don’t let society convince you that there’s absolutely nothing you can do. This world is meant for all of us. Lest we forget, people with chemical imbalances can have other illnesses as well. I know of a woman who has both schizophrenia and breast cancer.
I let people help me. That is my biggest burden of all, being a burden to others. But it’s a burden worth carrying. Let people help you.
Acknowledgment:
Not every moment is painful. I grow to appreciate the better moments and try to learn from all moments. Some moments are highly embarrassing while other moments are shame-filled, anger-filled or seemingly impossible. I have not forgotten that many moments are good when compared to the tough times. Some moments are downright dangerous and life threatening, and it’s not as if I choose to be in harm’s way. Many desired outcomes seem unattainable and are just that, and so I move on – around, under, over, any which way. My disorder has severely limited me, but I’ve simply tried pushing limits in an intelligent fashion.
I hung in there and somehow have made it to “today,” maybe in part because I did see the good moments. Maybe it was because I wanted and needed to learn about me, my predicament and my disorder. I have tried hard to be the best person I can be.
When it comes down to it, we are each responsible for managing our own health, that is, if we are able. Some people with mental illness need someone to hand them their medications, keep a close eye on them, go to the doctor with them, and so forth. For me, I manage my health and my illness, but I have help. And it’s up to me to utilize that help. I rely on a psychiatrist, friends and family. At one time when a psychiatrist was many miles away, I relied on an internist to prescribe my medication. (I wouldn’t recommend an internist for helping you change medications.) At times, I’ve seen a therapist, and I recommend it whenever you can afford it. It’s great to have someone to talk with freely.
In managing my health, I realize that I needed to admit that I have a problem. I don’t like the harsh reality of having schizo-affective disorder, and I did not want to hear those words from my psychiatrist when I was originally diagnosed. Deep down, I knew that I had some form of schizophrenia, but it helped me, for a while, to deny it. I knew that I had a serious disorder, and I knew enough to take my medication. I knew that my prognosis was not great. And so, I called it a metabolic disorder or an atypical bipolar disorder, names that sounded more in line with something I could conceivably conquer.
Why me, I asked early on. I don’t seem to fit the stereotype, whatever that is. I am intelligent, talented, and caring; I certainly don’t deserve it. Why me? Because I can handle it? Because I wear my illness well? Because it makes me a better person, a stronger person? Because I have something to offer people in having it? I don’t know. Maybe the better question is, “Why not me?” Why can’t a kind, loving and smart therapist have schizo-affective disorder? Apparently, she can. She has worked as such for 22 years, brilliantly and with great compassion.
One advantage I have over a lot of people is that I’ve been evaluated and know my mental health. I’ve made it back from insanity several times, and I don’t have the worry of many people and therapists, such as Oh, how embarrassing to go crazy. Will I be doomed? How will I manage? I’ve overcome many fears others have yet to reckon with. I’ve been embarrassed; I’ve been doomed; I’ve not managed. Yet here I am! I also have had to work so hard to gain every ounce of mental health possible that I’m mentally healthier than many people. Now that’s a paradox. Put in more understandable terms, I’ve taken such good care of myself that I rarely get sick in any way, and I’m typically in a better mood than most people despite my troubles.
Of course, I struggle. My worries just might not be exactly the same as yours. They needn’t be. We don’t have to be the same to get along. However, we can all strive toward better mental health practices, and this involves getting educated for your own sake but also for your neighbor’s. I grew up with the idea that you need to keep your problems at home and not tell your neighbor. The only trouble with that was that I would get on the phone or take off running out the door. Oops!
Surely there is meaning and purpose in life – we need meaning and purpose, and one of the joys of life is finding your purpose, creating your purpose. Since I’ve lived a life of driving backward and looking in the rear view mirror, I don’t know my purpose. But I do think that everyone’s life has some meaning, and I’m not convinced we need to see it at all times for it to be present. One of my purpose’s has been to be a good family member and a good psychotherapist. Perhaps there are more.
Anonymity:
Some people with “chemical imbalances” choose to tell others about their disorder. Why? Perhaps they think nothing of it and talk about their health with anyone. I suggest that patients put some thought into whom they tell, what they tell, how they tell and why they tell. It seems to me that it would be difficult to keep information away from family, unless there’s no contact with family. In my case, my parents know. Some close family friends know. My friend, Karen, in Branson knows as do the people with whom I worked in Branson. Anyone who has known me in a medication or doctor change knows. My psychiatrist knows. My internist knows. Some people at Vanderbilt know.
The question is what do they know? They each know only bits and pieces, that’s all. Telling everyone is a personal decision and should be thought through. I inform people on a need to know basis or for a really good reason.
Sometimes it helps to talk about your disorder and symptoms. Call it venting. Call it accessing feedback from others. Call it staying on track. Call it learning about oneself. Professionals, family and friends can help with this. I have read books written for families and friends that seem to suggest how to deal with symptoms rather than how to deal with a patient with symptoms. I like to think that patients, for the most part, can guide others in helping to understand their disorders. In this light, there are as many people as there are disorders because the patients who are in the driver’s seat can teach and share what may be helpful for themselves and others.
It may also be up to the patient to provide reassurance for others. I can tell people close to me, for example, that I’m having some trouble sleeping or I am not feeling well today. My point is that information should be shared that minimizes stress on the patient and others. For others, once some level of reassurance is provided, it is up to them to trust, let go and see how things go. I might also say to my psychiatrist, on a more detailed level, that I’m seeing things in my peripheral vision, for example.
When I feel particularly bothered over not knowing who knows what, I sometimes tell myself that everyone knows everything, and so what? This approach takes the bite out of paranoia. I also ask myself, what’s the worst thing that can happen in people knowing? They’ll run me out of town? Who knows – there may be a showering of praise over my lifelong efforts. I don’t really know.
In Branson, when people found out my medication had been changed, they showed understanding and acceptance. There were people who still hired me; there were clients who still sought my services. So it’s hard to know what people and other professionals might say and do. I hope I’m spared the shame and humiliation I’ve endured in the past. I do hope that my story, and my risk of presenting myself, might be of benefit to others. I’ll walk through fire to help a person I don’t even know! And it’s not that I’m a great person; it’s that I know the damage mental illness can do and does. And I know I’m in a position to do some possible good. I wrote my story for myself. I got it published for others.
Acceptance:
These past three years have been a real fight for me in adjusting to medications, mopping up the mess and holding down a job. Can you believe it – the mess that happened over a little change of medications?! Getting used to the new regimen has felt like World War II to me, but I feel that overall I’m winning. Unfortunately, I didn’t have immediate access to my doctor, and that was costly.
So how have I managed? It hasn’t exactly been a crap shoot, but especially early on, things were hit or miss. I had to focus on any moment of clarity and normalcy, and build on that. I always worked toward getting my disorder to be treatable. That is my daily goal today and always has been. At age 50, I’m saying, “Oh, wow, God is amazing.” Even in my toughest and seemingly most hopeless moments, I felt His miraculous presence, no matter the situation, no matter the outcome. I’ve worked hard on myself, praying for strength and guidance every day.
I’ve figured out the mind over matter issue – what you should do when your mind goes haywire. I know what I did when I was crazy and exhausted. When I was first ill and had moved back in with my parents (and when everyone else was going to college), I asked for a guitar. My mom said, “Well, only if you’ll play it.” I knew I would, because it felt as if that’s all I’d have. I sat on my bed and played for hours. I sang with some inner voice that I could hear through the music. I think it was an inner voice that I could identify even when I was disordered. Maybe it was another part of my brain that I kept alive.
I practiced the guitar every weary day, and it brought an ounce of sunshine into my world. Not every fiber of our being is crazy when we’re mentally ill. Part of our spirit remains untouched and free. Harnessing that energy sets us free and apart from feeling trapped. My guitar knew no limits, and I didn’t try to be the best in the world at anything. I just tried to belong in the world. I hope that you, too, can learn of your own belonging and find some joy in this world.”
Dr Dobbins was honored by the Disability Resource Center in Knoxville for a life that reflects the spirit of the Americans With Disabilities Act by helping to break down attitudinal barriers in society for those with mental illnesses. She now teaches part time at the University of Tennessee Knoxville to students learning to be mental health counsellors, using her book as one of the recommended readings.
To read more, you read samples online at: www.bridgeross.com
The book is available in e-book formats for Kindle, Kobo, Nook and via the Apple I-book store and Google Play. You can buy hard copies at Amazon, Chapters/Indigo, Barnes and Noble as well as from any other bookseller with titles from Ingram Publishers.