Sleeping by Jessie Close

There are few things I hate worse than not being able to fall asleep.  Tossing and turning and punching my pillow and kicking my covers off my feet.  I’ll turn my light back on, try to read a bit, turn the light back off, groan out loud, swear.  This tossing and turning is irritating, to say the least.  It’s part of NOT being manic anymore.  When I was manic I wouldn’t have even considered going to bed and wouldn’t have counted on knowing I would eventually fall asleep.

Sleep is something that’s incredibly important if you live with a mental illness.  I remember my psychiatrist, when I was in the hospital, telling me to sleep as much as I could.  I remember him telling me that SLEEP is MEDICINE.  But in the beginning of my hospital stay I walked the halls, talked to the nurses and attendants until the wee hours of the morning.  I would be told, repeatedly, to go back to bed and sleep.  I’d retreat to my room, read a tiny bit, then come back into the hall to bother them again.  I guess my medications weren’t working yet!

For most of my life I stayed up as late as I wanted.  I loved the quiet and the feeling that I was the only one awake.  For those of us who have experienced mania, we can manipulate ourselves into staying awake until dawn to trigger a full-blown manic episode.  I thought that was my secret until my doctor told me he knew all about it.  He added that most bipolar patients know this instinctually.

My relationship with sleep has been a tumultuous one.  My mother tells me that when I was an infant I exhausted her because I hardly slept.  She would put me down in my crib and before she knew it my head would pop up.  I’ve raised babies myself and know that bone crushing exhaustion and am forever grateful my mother didn’t do away with me.

I discovered that I loved nighttime at the same time I discovered drugs at age 16 in Los Angeles.  An older boy took it upon himself to introduce me to pretty much all the drugs that were available and we would stay up 24 hours many times over.  I guess it goes without saying that amphetamines were my drug of choice.  My family had no idea I was living this way until Glenn and our mother came to visit and saw me – rail thin, my hair falling out from malnutrition.  I was 20 when they rescued me.

As far as nighttime, I remember, when living with the older boy, that he needed more sleep than I.  I would sneak out of our bedroom while he was asleep.  At those times night cloaked me with the blue light of the moon and that was all I needed to enjoy time with my animals.  I had a dog and a rabbit who played together and a huge, orange cat who snuggled with me, purring.

Mental illness was not a subject I heard about back then in the early 1970’s.  My I had no point of reference, no dialogue.  I believe I was only able to sleep when I had drugs make me sleep; street drugs that were slowly killing me.

Nighttime is as important as daytime.  Night and sleep are huge slices of our lives.  My relationship with night and sleep has evolved over the years and circumstances.  Now that I take psychiatric drugs I can’t stay up all night.  It’s few and far between that I don’t fall asleep about an hour or two after I take my medications.  It’s very rare that I can’t sleep and, when I can’t, I suspect mania is punching around in my brain but ultimately not getting it’s way.

I can’t say exactly when bipolar disorder descended on me.  The drugs I took in my teen years and early twenties, even after being rescued by Glenn and Mom, hid my cycling moods.  Then, marriage was supposed to keep me in check, keep me from the wild and crazed, manic me.  And it was supposed to keep me from the inevitable depressions that followed.  But marriage didn’t change anything; it only gave me something to destroy.  Back then I could pinpoint depression but mania left me, once it passed, speechless with grief.

Now, when I think of those forbidden hours between midnight and 7am, I can hold them close to me, in remembrance, and sleep.

 

On the Path to the Tipping Point by Karen Pratt

The theoretical biologist Rupert Sheldrake created the Morphic Field Theory: that a change in the behavior of a species occurs when a critical mass – the exact number – is reached.  When that happens, the behavior or habits of the entire species changes.

Ken Keyes, Jr. wrote the following version of the tale of The Hundredth Monkey:  Off the shore of Japan, scientists had been studying monkey colonies on many separate islands for over thirty years.  In order to keep track of the monkeys, they would lure them out of the trees by dropping sweet potatoes on the beach.  The monkeys came to enjoy this free lunch, and were in plain sight where they could be observed.  One day, an eighteen-month-old female monkey named Imo started to wash her sweet potato in the sea before eating it.  I imagine that it tasted better without the grit and sand or pesticides, or maybe it even was slightly salty and that was good.  Imo showed her playmates and her mother how to do this, her friends showed their mothers, and gradually more and more monkeys began to wash their sweet potatoes instead of eating them grit and all.  At first, only the female adults who imitated their children learned, but gradually others did also.

One day, the scientists observed that all the monkeys on that particular island washed their sweet potatoes before eating them.  Although this was significant, what was even more fascinating was that this change in monkey behavior did not take place only on this one island.  Suddenly, the monkeys on all the other islands were now washing their sweet potatoes as well- despite the fact that monkey colonies on the different islands had no direct contact with each other.

Jean Shinoda Bolen, M.D. writes that:

“The hundredth monkey” was the hypothesized anonymous monkey that tipped the scales for the species: the one whose change in behavior meant that all monkeys would from then on wash their sweet potatoes before eating them.  As an allegory, The Hundredth Monkey holds the promise that when a critical number of people change their attitude or behavior culture at large will change.  What used to be unthinkable is done by some, and then many; once a critical number of people make that shift, it becomes what we do and how we are as human beings.  Someone has to be a thirty-seventh monkey, and a sixty-third, and a ninety-ninth, before there is a hundredth monkey – and no one knows how close we are or how far away that hundredth monkey is until suddenly, we are there. For human culture to change – for there to be a hundredth monkey – there has to be a human equivalent of Imo and her friends.”

What BC2M is trying to accomplish is to find the tipping point, the point at which that final person changes their mind about mental illness and stigma, finally and inalterably changing human consciousness forever. We are seeking the tipping point, globally.  Every person now on Facebook, every person clicking through to the BC2M website and taking the Pledge, every person being reached by the PSA and Close family speeches – every person who is in the process of changing their mind is one more person on the path to the tipping point.  Each one of us is directly creating the possibility of universal change – we are walking together toward a new world.  And, in fact, isn’t each person changed, each mind changed, each life changed also a tipping point within the community in which they live?

Tied to Medication by Jessie Close

            I don’t know what’s taking me so long to write this except that I get paralyzed by the thoughts of medication.

I don’t like to think of my medications this way but, honestly, I am tethered to them, chained, cinched.  If I don’t take them I get sick, like an addict.  It’s the getting sick part that makes me wonder why so many of us stop taking them.  I’m a chicken when it comes to getting sick.  I wash my hands when I get home from shopping and this one habit, I think, keeps me from picking up germs.  I must add here that I don’t wash my hands obsessively but was instructed by my dad, who was a doctor, to not kiss, hug or shake hands during flu season.  I do think that’s a bit obsessive.  The washing hands advice is good though.  See?  It’s so very difficult to keep me on track when discussing medications.

The difference between an addict who uses street drugs, even if they originate via a pharmaceutical company, and those of us who use prescribed psychiatric medications, is that the psychiatric drugs make it possible to live in this world while the addict using street drugs is taken away from the world.  One is about self-care, the other about self-harm.  One is about learning to manage life, the other about mis-managing it.  I know this because I’m a recovering alcoholic who used to pop many different types of drugs.  Now, everything I do is to keep myself alive and free of the wrong drugs and alcohol.  I don’t take kindly to people telling me I shouldn’t use psychiatric drugs.  Street drugs allowed me to either slow down or speed up.  I regulated my changing moods, but not with the needed medications.  It’s a miracle I’m alive.  Aside from seasonal depression, I’m a pretty steady person now and the right kind of drugs have made a difference.

Mental illness is not for the faint-hearted!  If you’re afraid in the beginning, if you persist with your medication, you will earn bravery by taking care of yourself.  It takes courage and organization to manage your medications even, unfortunately, when all you feel like doing is lying on the couch and giving up.  I have my own system for my medications.  Not a month goes by that I don’t think that keeping track of my supply is a major pain in the ass.  I hate re-ordering, hate figuring out when I need to re-order.  The worst is when I’ll get near the bottom of a prescription and see that there are no refills left.  Inevitably, I’ve put off reading the label for as long as possible, not wanting to read CALL YOUR DOCTOR.

My brain goes blank when I have to deal with my medications.  I want to lie on the floor and kick and scream but expressing those feelings that way never works!  Unless I want to stop the medication – and I don’t – I have to pull myself together and order refills.  I would recommend giving this responsibility, temporarily, to a family member or friend who lives nearby if you are too sick to deal with it.

The side effects of medications can also be challenging.  I have battle scars from taking them. – two of my medications had to be stopped because of adverse reactions.  One of those medications left an itchy rash on my skin; I scratched them and now have scars to show it.  Calamine and seeing a dermatologist would have been a better route.  Again, it is learning self-care that is important.  I am fortunate now to have found the right mix of meds that helps me with my recovery and stability and is safe for me to use.

Perhaps not drawing that line between psychiatric drugs and drugs taken to get high is a sticking point with some people.  Or perhaps they would rather use drugs that get them high.  I don’t know.  I do know that finally being diagnosed with bipolar disorder and finding the right medications has transformed my life.  My doctor and I monitor my psychiatric drugs.  I tell him when I’m feeling off and he makes adjustments.  When my medications are working well, I don’t feel them in the least.  I feel good, have energy and can think without getting too confused.  They will remain an important part of my life, creating balance and supporting my wellbeing.

I wish all of you a very happy holiday.  I pray that we all pull together to make 2012 an even better year for all of us.  Be good to yourselves and reach out to others if and when you need to.   Remember, we are not alone!

 

A Mother Daughter Conversation by Linea Johnson

Where have you been for the last few months, Linea?

I’ve been living in Geneva Switzerland.

What are you doing?

I’m interning for the Mental Health and Policy department at the World Health Organization Headquarters.

How did that happen?

I had been working for an amazing filmmaker, Delaney Ruston, on her upcoming film “Where in the World is Mental Health” (http://www.unlistedfilm.com/world.html) doing international mental health research when I came across the mental health policy page. On the bottom of the page was a short message saying that they accept interns, so I wrote the director an email, and after lots of hard work, here I am!

What prompted you to pursue international work?

I knew that there was a lot to be fixed in America, but I also knew there were a lot of capable hands working on it. This is not the case in developing countries.  In fact, 85% of people with severe mental health conditions in developing countries are unable to get the support and treatment that they badly need. As I learned more and read the amazing WHO Mental Health and Development Report (http://www.who.int/mental_health/policy/mhtargeting/en/index.html ) I saw that the international development organizations were even missing this very vulnerable population. I wanted to know more about this topic, more about how people are helping, and more about what I can do in the future to help with their efforts.

How did you get involved in mental health advocacy in the first place?

I initially began doing mental health advocacy a few years after I was diagnosed with bipolar disorder. During the entire time I was dealing with the ups and downs of the illness and diagnosis (and the grief and the anger and the joy) I was writing. I eventually, through the help of my wonderful mother, realized that I should put my work together with hers to make a book. This book (which will come out in May from Saint Martin’s Press) began a larger journey that took me to classrooms, conferences, and beyond to share my experience. I was also lucky enough to find BringChange2Mind within the first few months of their childhood and began volunteering. This helped me become even more involved and helped me learn more about how to help others and how to fight stigma.

Who are a few people who have influenced you or mentored your journey?

My mom, of courseJ And my dad and sister. But also people like Delaney Ruston, Emily Smith, Nanci Schiman, Theresa Emerson, and all the volunteers at BringChange2Mind. Also, of course, Calen Pick and Jessie Close who are my heroes. Oh, and of course Glenn too! She’s amazing.

 

You are barely into adulthood and you have certainly had a lot of experiences with finishing college, getting a book published, working with mental health advocacy groups in the US and now working with the WHO. What do you do for fun?

I love reading, running, yoga and knitting. But of course I love hanging out with my friends whether we are talking about art, books, or health or anything really. I also love to play the piano, go to art galleries, and go to the ballet, symphony and opera.

You do have a rather serious health issue. What do you do to take care of yourself?

I do a lot of things to take care of myself. I think the most important thing I have, and I am very very lucky to have this, is a good stable support network. I also have to work hard when that network is busy or in a completely different country so I also see a counselor, meditate, run or do yoga, read, and take medication.

It is said that international travel changes people and helps them see things in a different way. What are a couple of things that you have learned while in Geneva and working with the WHO?

I have learned how much I love the health field and how fascinating it is! Especially at an international level. I have learned just how much I don’t know about the world and people in it. I realized that the most exciting thing for me to do is to meet someone from a new country and learn about them and their life. I have also been wondering about America, for instance, why don’t we use the metric system? Why is our international calling code “1”? And this one is for me, because many Americans don’t have this problem, but why don’t I know any other languages? I have tried three new languages now and none of them have stuck.

What question do you wish I would have asked you?

Do you know French yet? Answer: unfortunately, no. I live in a French speaking part of Switzerland, have a room bursting with French how-to books, French dictionaries, French graphic novels and French fiction and I have not had time to touch any of it! I don’t even remember how to say “this is my stop” on the bus!

Let’s Move That Bus – Cinda Johnson

As many of you know Bring Change 2 Mind was featured on the recent Extreme Makeover: Home Edition on November 4^th on ABC. Gina and Allen Hill and their sons were the recipients of a new home, built in Kansas in the hottest month they have had in many years. Glenn Close, the Bring Change 2 Mind executive director, board members and volunteers were there to give a hand and welcome home the Hill family.  Gina was already part of BC2M having worked as one of the first volunteers for the organization. This episode provided a glimpse into the lives of a family who is living with the effects of PTSD. I had the honor to be on the site during the week of the build and I heard stories from so many people who were also affected directly or indirectly by a mental illness. I read the outpouring of gratitude on the BC2M Facebook site and the stories and emails that are arriving daily. The first cry is, “I am part of a community of people who understand what I am going through.” The second is, “Thank you to BC2M for being an organization with a goal to eliminate the stigma surrounding mental illness.” People write, “Maybe now my family will understand.” “I told people that I have mental illness for the first time.” “My son is living with a mental illness and maybe our friends will be more understanding.” These are just a few of the response we have received after the airing of the episode featuring the Hill family. Finding community is the first step. I invite you to take a few more steps with us.

I am a professor in the field of disability including mental health conditions. From my research and education I know that self-determination is extremely important to resiliency and stability. The definition I use is “”the ability to identify and achieve goals based on a foundation of knowing and valuing oneself”.  This includes these components:  know yourself, value yourself, plan, act and experience outcomes, and learn (Field & Hoffman).  I thought self-determination was enough but my daughter Linea has taught me that there is much more.

When Linea was first hospitalized and finally diagnosed with bipolar disorder our lives turned upside down. Although I taught my graduate students about bipolar and had worked with adolescents diagnosed with this illness I didn’t really “get it” until we were in the middle of our own severe crisis. We almost lost our daughter to this disease and it took many traumatic turns and upsets to finally get to the point where we could move forward with Linea in the lead. Her first experience (and therefore ours) of the inequity and social injustice of mental health care came after seven hours in the psychiatric ER in Seattle’s trauma hospital. When a bed was finally found for her we left many patients behind to spend the night on gurneys in the halls because there was no place to be found for them. The majority of these patients were men; men of color, poor and mostly homeless. It was not fair. As sick as Linea was she said, “We have to do something.”

Over the next few years she moved forward to stability and she took the words of Kaye Redfield Jamison to heart. We met Kaye at a book reading in Seattle and she said, “People who are stable and doing well don’t have to tell anyone.” So the public mostly sees people who are not doing well. Those who can’t afford medications or the doctors to work with them to adjust and tinker until things are better. Those who are too exhausted and overwhelmed to make a phone call or follow-up with the next step of finding help and have no one to step in and make the call or go with them to an appointment. Linea knew that she was privileged in her care, her support system and her ability to articulate her needs. We all knew that because of our resources, advantages and simply the luck of the draw we needed to speak up for those who could not.

Linea began to speak with me at conferences and symposiums around the country and soon on her own. She had the opportunity to attend the Fountain House Symposium where Glenn Close received a humanitarian award. Linea sat with Glenn and Former First Lady Rosalynn Carter and other dignitaries while they talked about mental illness. Linea had felt that she was the “only one” and that being with these very influential and highly respected people who were speaking out about stigma and isolation as well as the need for more resources and treatment changed her. She was no longer alone but part of a larger community and one that was committed to change. Jessie Close and Calen Pick are not only inspirations but close friends. The BC2M volunteers joined her circle of support. Her advocacy work has only grown as she has gained more skills and contacts. She had the opportunity to speak on a panel with Representative Patrick Kennedy for One Mind for Research. She is now in Geneva, Switzerland, interning with the World Health Organization and learning about human rights violations around the world in mental health care and what can be done to change this.

I have traveled with her on this journey from patient to advocate and to her rapidly growing sense of empowerment as part of a larger community. I absolutely believe that this has been a crucial part to her stability. She has confidence that she can take care of herself and ask for help if needed. She is honest with the world about her illness but doesn’t let it define her. She is learning about injustice and is taking whatever small steps she can to join a human rights movement to eliminate stigma and assure treatment for people with mental illness.

Linea has taught me that we all must work together and that being part of this movement can be a part of recovery. Not everyone wants to speak on such a large stage but everyone can speak up in their own homes, neighborhoods and communities. Sign the BC2M pledge and ask people who do not have a mental illness (if you can find anyone!) to do the same. Push back at your insurance company to assure parity coverage for mental health care. Help someone else if they are too ill or discouraged to do so. Join local, state and national organizations that advocate for equity and treatment. Most are partners with BC2M and can be found on our webpage. Make a small difference. These together add up to big differences. We have over 18,000 people on BC2M’s Facebook. Let’s each do one thing this week to eliminate stigma, increase understanding and push for justice, equity and treatment for the many people who have a mental illness and are not receiving what they need. Let’s MOVE THAT BUS together.

My Nils – by Jessie Close

            Every weekend morning back in the ‘50’s my dad would ride an old horse across the fields and into the woods of Connecticut.  The neighbor’s dogs would join up with my father’s to form what was called the Flea Pack.  At one point my parents owned five dogs so the ensuing pack was quite large.  These days, my siblings all have dog packs, some only two dogs, but never only one.

I have a pack of four small dogs but also another species: a tiny yellow cockatiel I called my best guard dog because she heard people at my gate even before the dogs.  Her name was Nils.  My sister, Tina, has two birds but we’re the only ones to venture into the avian world.

Last week, I found Nils hunched up and puffed up on the bottom of her cage.  I wasn’t sure if there was something wrong with her or not but I took her out of her cage and held her close.  One of my dogs, Snitz’s son Uno, jumped up on the couch to get a good sniff.  He seemed concerned which alerted me because he never usually pays any attention to Nils.  It was evening, and a weekend, so I called the 24-hour vet emergency clinic over in Bozeman and readied myself for the hour drive.  Even though I brought Nils’ traveling cage, I tucked her into my shirt, her head peeking out from my neck.  She didn’t move once during the drive.  Of course, the four little dogs came along too.

When we arrived at the hospital Nils was put into an incubator right away where the air was warmer and more humid.  She was still puffed up but not as badly as before.  The veterinarian was very kind and told me he would transport Nils to the avian vet at 7:30am the next day.  He also told me that many times birds come into the clinic when it is too late for them.  The reason this happens, he told me, is because birds are flock creatures and when a bird is sick the flock turns on them.  I was Nils’ flock and it was to her advantage to not let me see how sick she was.

My four little dogs and Nils inhabit my world.  They keep me laughing and calm, provide me with ears to hear when I speak and bodies to hug when I need a pick-me-up.  I can’t honestly say I live alone because I live with them.  But Nils held a very special place as ‘only bird’.  She would sit on my shoulder as I did the dishes or sit on the back of the couch when I was reading or watching TV.  Her favorite place, however, was on my chest with me massaging her neck.  Whenever I stopped massaging she would shriek and pretend to bite me.  Of course, I would continue to massage her.  She also liked to be with me when I was writing.  She’d peck at my laptop but knew she wasn’t allowed on the keyboard.  When she could get away with it, she would peck at the keys while her feet wrote gobbeldy-gook, quickly, like feet crossing coals.  Nils and the dogs provide something that medication, talk therapy or exercise just can’t bring to the table.  They provide a form of love that cloaks my being.  I guess it’s called unconditional love.  However you want to label it I don’t think I’d live as well as I’m able to without them, my furry and feathered friends.

The next morning I met with the avian vet and he told me the same thing as the vet last night told me.  He said an x-ray was really the only way to see what was up.  I waited while they took an x-ray then the vet showed me how three quarters of Nils’ body was filled with fluid.  There was no curing that.  In fact, Nils had been so very brave to try to keep her illness from me but in the end she had to succumb.

I remembered at a DBSA Conference in Chicago I had met a woman whose service animal was a cockatiel.  She pushed her bird around in a perambulator, cage inside it.  I understand how a bird can be a service animal.  They are brave and delightful tiny personalities.

I miss my tiny friend.  I know she’s with a flock up in Heaven, thousands flying together, all yellow with orange cheeks.

 

Weighty Subject by Jessie Close

Weighty Subject

Karen, a dear friend of mine, and fellow bipolar disorder sufferer, inquires, when traveling, if her chosen hotel keeps a few rooms/bathrooms with no mirrors.  Since I have ballooned up while taking anti-psychotic medications, I so understand what she’s talking about.  I believe that when I’m traveling I should look my best, feel my best in order to impart those feelings to the audience.  But, when I’m in a hotel bathroom behind closed doors, there’s no escaping the huge reflection of large me.  I mutter rude things at myself and feel awful.  This encounter is a wake-up call every time.

Wikipedia defines metabolic syndrome as follows:  “Patients with schizophrenia, schizoaffective disorder or bipolar disorder may have a predisposition to metabolic syndrome that is exacerbated by sedentary lifestyle, poor dietary habits, possible limited access to care, and ANTI-PSYCHOTIC DRUG-INDUCED ADVERSE EFFECTS.” (Capitols are mine)  Metabolic syndrome changes our metabolism by slowing it down and can cause massive weight gain.  Of course, many people eat the right food and exercise but when psychiatric medications are on board, weight gain is a struggle all too often fought and not won.

My home in Montana has had one small mirror above the bathroom sink since 1996 when I weighed 120 lbs.  This mirror is 12”X16” (I just measured it) and frames my head and slightly below my shoulders.  I would have to haul my step stool in to see anything further down my body, and I have done just that, but not recently.  This was not a plan on my part.  What it is, really, is an untoward trick on myself.  When I see myself in the hotel mirrors I am shocked.  I can go for weeks without seeing below my shoulders in my bathroom mirror at home and here is where the trick happens: I begin to feel thin!  Really and truly, I do.  I know I’m not thin but it certainly seems like it.  Left to my imagination, I’m thin.  I have to catch myself in window reflections to have a realistic notion of what I look like.  Did I fall out of love with mirrors as my weight gained or have I never thought much about my image?  I think the truth is that I was slender for most of my life and didn’t understand anything about negative body image.  It’s been a constant shocker for me to see how large my once slim body has become.  Mirrors don’t minimize my rude awakening.  What mirrors have helped me do is understand just how I look, no rosy glasses involved.  And I have actually begun to do something about my weight.

 

The weight gain from medication is a terrible side effect.  If our self-image is already terrible because of our mental illness, then weight gain certainly doesn’t let us  feel any better about our selves. I find the weight issue connected to psychiatric medication a sad, embarrassing, humiliating gift of self-consciousness.  If we can lift our heads high when we are asked what mental illness it is we endure then, I believe, we can hold our heads high when we, who have metabolic syndrome, see ourselves in a full-length mirror.  Could-a should-a…  I still feel that terribly sticky emotion of shame but now that shame makes me angry.  I need that anger to make me eat more healthy food and exercise even if that’s using a jump rope or bouncing around in the living room or actually taking a walk with my dogs.  What am I angry with? My own complacence? My dangerous belly fat?  My self-pity?  Actually I think the anger helps fuel a strong will, which is what I need to get healthy.

Let me tell you about my son, Calen Pick.  Calen is my hero.  He was almost up to 300 pounds a few years ago because of his anti-psychotic medication.  Then I began using the same anti-psychotic he does and I learned first hand how difficult it is to stay slender while taking clozapine (Clozaril).  But as a young man Calen wasn’t surrendering.  He lost a ton of weight using the Fat Flush diet and now he exercises everyday with his wife.  I used to think that Calen was able to lose because he is young.  Nope.  It’s what he eats and how he exercises.

I now keep very little food in my refrigerator.  This system works well as the nearest grocery store is a thirty-two mile round trip and cravings haven’t yet made me get into my truck to drive that far.  I have two servings of carbs in 24 hours.  I eat mostly vegetables and protein.  I succumb to a chocolate bar (Cadbury with Roasted Almonds) about once a week.  If I don’t feel like walking I jump rope outside.  If I don’t feel like jump roping, I grab my 5 pound weights and bounce back and forth, sideways and up and down.  I hate exercising but I’m finally convinced that diet without exercise just doesn’t work.

Possibly someday I’ll have a full-length mirror in my home.  Probably not.  I do know, however, that I’m losing perhaps 1/16^th of an inch every day.  Now, I’ll take my new resolve on the road and see what happens.  Those huge mirrors will tell me.  And it better be good!  (I’ll let you know.)

 

What a Difference a Friend Makes – Chrisa Hickey

When my son Tim was younger, he didn’t have a lot of friends.  From a very early age, he didn’t relate well to other kids.  He didn’t want to play with them.  It wasn’t a matter of not wanting to share toys; he had no interest in people his own age and size.  Adults thought he was charming because he would sit on their laps, giggle, and even flirt with them, but a small child can’t form a relationship with the occasional adult visitor.  We let Tim’s lack of friends slide, describing it as one of Tim’s idiosyncrasies; another piece of shrapnel inflicted by the war on his mental illness.  Until he went into residential treatment.  There he met other teens like him with the same challenges, and through living with them, going to school with them, and playing sports with them; he made friends, for really the first time in his life.  And I firmly believe that his friends have played a huge role in his stability.

It’s strange that I thought that way, considering I reached out to peers and made new friends to help me deal with my emotions about raising a child with a mental health condition.  I know that I could not have kept my sanity intact if it hadn’t been for the amazing friends I’ve made through The Balanced Mind Foundation, BringChange2Mind, NAMI and my blog.  Why didn’t I realize that Tim needed – no, deserved – the same kind of support from peers?  And I really didn’t understand the role that stigma – or fear of stigma – played in my rationalization around Tim’s lack of friends, and what that missing component meant to the struggle to achieve his stability.  It was so much easier for me to isolate him from other kids to save him from, what, ridicule? Shame? Being singled out as different?  Hindsight being 20/20, yes, probably all of those, but I also simply didn’t realize how great the role of friendship would be for him.

The impact of friendship in the treatment of persons with mental health conditions is studied and documented, but it’s often overlooked as an important part of recovery.  SAMHSA, the Substance Abuse and Mental Health Service Administration and the Ad Council have recently launched a new campaign to raise awareness of the importance of friendship in the treatment of mental health conditions.  The campaign is appropriately named, “What a Difference a Friend Makes,” and is designed to educate the public on mental health conditions, reduce the stigma surrounding them, and reinforce the importance of supporting friends with these diagnoses.  The site has education on different conditions, a forum where anyone – those diagnosed or with friends or family diagnosed – can chat anonymously, stories written by real people about their conditions, and information on where to find mental health resources in your local community.  It’s not the most comprehensive or robust website about mental health, but it is a great start towards our government taking an active role to combat the stigma of mental health conditions. 

National Day of Prayer for Healing and Recovery from Mental Illness: Jessie Close

October 4^th = National Day of Prayer for Healing and Recovery From Mental Illness

            I never used to pray.  My siblings and I were raised in an environment that demanded prayer.  Needless to say, when we were out of the parental home we rejected religion and prayer.

“You live in a church where you sleep with voodoo dolls…”

That lyric Sarah MacLachlan sings is pretty much where I was for most of my life.  It would have taken someone with a baseball bat hitting the backs of my knees to make me kneel in prayer.  But that was before I sobered up, before I suffered with mental illness.

Prayer is not religion.  I can even say that reading the Bible is not religion, it’s reading the Bible, which I do.  I have enjoyed attending services with friends although going on my own is yet to be seen.  It has taken suffering to get me on my knees.  Surrender is a scary prospect.  All it means, really, is that we have surrendered to our pain and are asking for help.  We don’t have to know a certain prayer or speak our prayer out loud.  All we have to do is show ‘whatever it is out there’ that we give up in the face of suffering and grief.  We can also give thanks in the same way.

On Tuesday the 4^th we can rejoice in our recovery (no matter a little or a lot) by saying a prayer and sending it out there.  If you need a prop, get hold of a helium balloon and send it up with your prayer.  You can also just tip your head back to get a view of the sky and say your prayer to that enormous piece of heaven.  You get to invent where you send your prayers.  Sometimes I simply picture a meadow or the ocean.  It really doesn’t matter because the results are pretty much the same.  Peace.  Calm.  I appreciate those two attributes so much that I really have stopped asking for ‘things’.  I understand that what comes to me in this life is what’s meant to be, whether pain or happiness.

I did have a crash course in prayer when I finally found the door and walked through to AA (Alcoholics Anonymous).  So many of us with mental illness have found ourselves in AA.  I used to self-soothe with alcohol, especially when I was manic.  But then the addiction happens and we find ourselves with trembling hands and nausea.  I found prayer because I was willing to.  That’s really all it takes.

October 2 – 8 = Hope and Harmony Mental Illness Awareness Week

If you yourself live with a mental illness you know that you don’t need a whole week to be aware of it, but other people do.  Much of what other people are aware of is up to us.  In return I hope that those other people have the grace to not call us names or make “clever” remarks about the mentally ill.

I was handed a perfect example of inappropriate remarks just a few weeks ago.  My friend, Molly, and I drove down to Jackson, Wyoming to see art by a friend as it hung it an upscale furniture store.  We caught up with Bill and his wife, Karen, at their hotel and were introduced to another couple.  I was asked what I do.  I told them I was an advocate for mental health.  The man we didn’t know said something about that being a good fit for me because of Fatal Attraction and my crazy sister.  Whoa!!!  I didn’t laugh.  In fact I told him I have bipolar illness.  Now, the REALLY crazy part of this story is that this man then told me his son has a mental illness.  Double Whoa!!!  He was very apologetic.  I didn’t say it was okay.  I’ve learned over the years that silence is sometimes more powerful than words.  And this is an example of ‘what other people are aware of is up to us’.

So, at all times, but especially this week of October 2^nd through the 8^{th,  I’ll}

be looking  for situations where I can educate, where no one has to squirm.  In the past I have been embarrassed by my mental illness, I’ve regretfully kept quiet when I hear mean remarks.  So, for those of us who are able to speak let’s hold together and speak up, especially for those of us who can’t.  And let’s take this beyond October 8^th.

Cinda & Linea: A Journey, by Cinda Johnson

Fear seems to be a travel partner on the road with a mental illness, both for the person with the illness and those who love him or her.  A serious and chronic illness of any kind can easily hold people back from taking risks and experiencing life to the fullest.  My dear friend Jessie Close and I have often talked about the fear that arises when remembering the worst of times that come with a mental illness experienced by a child, even a child that is a young adult and becoming increasingly independent. A mild case of PTSD perhaps but the heart pounds, the mind goes to horrible scenarios, reliving the past experiences, and the very strong urge to control arises. My daughter, Linea, who many of you know through her work with BC2M, left this morning for a 3-month internship with the World Health Organization in Geneva, Switzerland, where she will be working with the Mental Health Policy and Service Development. We both had moments of anxiety and worries over the last few months preparing for this move. At one point she questioned whether she would be able to take such a huge step. Although she was organized and started working on this move months ago, I think she found that preparing for this adventure was much more involved and took more time than any of us had anticipated. Anyone would feel anxious about leaving the country for three months, moving to Europe without knowing anyone, and beginning work at a huge international organization. For a person traveling abroad who has a serious health issue, things get complicated, particularly if traveling for an extensive length of time. We know what helps keep someone with any type of health concerns feeling better: Not getting too tired, regular schedules, enough rest, healthy food and exercise (and perhaps taking prescribed meds). International travel doesn’t exactly support this life-style.  Adding the history of trauma and the fight for recovery to all of this can be enough to stop someone in their tracks. Too much trouble! Too scary!

My emotions are complicated as Linea is winging her way across the U.S. and on to Europe. There is so much love and pride in all that she has accomplished; mixed in with a bit of worry left over from the experiences we had in the past while she was in the process of a diagnosis of bipolar disorder. Those days included emergency trips across the country to her college, a sad and frightening trip bringing her home, taking her out of school on a medical leave, hospitalizations, and a few years of her trying to get stable while battling bigger ups and downs than she could tolerate. It left us all with residual fear and worry. It left us with our own fears about just how much a person with a mental illness could really accomplish.

I have had a few middle-of-the-night worries. I worried that her room-mate in Geneva might Google her and discover that she has bipolar disorder. Linea is completely open about her illness, speaking and writing on a national stage about her experiences…yet, there was a niggling voice wondering if this information would change people’s perceptions of her. And then, I let it go. I worried that the flight and jet lag and stepping into a high-paced intern’s job would cause symptoms to flare. And then, I let it go. It has never been clearer to me that we all need to work together to provide opportunities for normalcy, success, and yes, even failure for everyone, including people with disabilities, health concerns and any other obstacle that whispers, “You can’t.” Linea is a strong, intelligent, fierce, loving and a beautiful young woman. She has proven beyond a doubt that she will fight to stay healthy. She has completed a college degree, written and sold a book, traveled extensively and worked and saved enough money for a great adventure to Geneva, all while keeping herself stable. I trust her to let me know if she needs us. I, too, am healing. She is growing, learning and flying!

Finally, I thought it might be helpful to share a few things that we learned as she prepared for her trip. You likely have many of your own suggestions but perhaps there are a few things from this list that might be useful.

• Make sure you have enough medications for your trip. (No brainer, right? Not always easy!)
• Check with your medical insurance company to get “vacation extensions” so that you can take additional refills of meds with you. (The pharmacist was extremely helpful with this. Linea has a good relationship with her pharmacy and they wanted to help her.)
• Get a note from your physician and a list of your prescriptions to assist through Customs and if you should need more medication while away. (Find out how difficult it is to get refills in the country you are visiting.)
• See if your doctors or treatment providers will email you if necessary.
• Pack all medications in carry-on luggage!
• Be up to date on flu, tetanus and other immunizations.
• Complete an advanced medical/psychiatric directive before leaving.
• Carry travel insurance. It’s not that much more of an added expense and it provides peace of mind if something should happen while you are out of the country.
• Talk with your doctor to develop a schedule for sleep and medications if traveling through many time zones.
• Take care of yourself, trust yourself, have confidence and, as Linea’s dad told her, “Take risks”.

I wish my daughter a successful and confidence-building trip, full of wonderful new experiences, friends and opportunities. Yes, there will be challenges, just as there are for any one of us and, yes, it can be more complicated for someone with health concerns but with planning and boldness the envelope can be pushed, one person at a time. Push your envelope as much as you can. I wish you bon voyage, wherever you take your life.