My Story: Living With Mental Illness

The first time I can remember contemplating the idea of ending my life, I was eleven years old. I didn’t have a detailed exit plan. It was simply a strong feeling that the world would be a much better place if I wasn’t in it. The idea was shocking, terrifying and sad. “Why did I think that?” As the year progressed, more foreign little dark thoughts would slowly creep in, unexpectedly overwhelming my young brain and then fading away again. We don’t talk about things like that. Even if I’d wanted to tell someone, what words would I use? How could I possibly admit these kind of “bad” thoughts and feelings? What would happen to me if I told? My depression wasn’t something conscious or obvious. It was just something I felt deep down in the murky part of my soul. I was raised in a strongly religious, faith filled home. I believed in God and the power of prayer. So, I prayed morning and night, I attended church, I “lived right”, I trusted that would make everything better soon. I also bought a journal that year and I started writing in it every day, addressed to my“Dear Journal Friend”… and off my mind would race telling about all the very exciting and important things happening in my 11-year-old world like what I ate for breakfast that day and what happened in the lunchroom. I didn’t begin writing about my darker thoughts until I was 13. It took two years to start finding the words and trusting the safety of the journal pages to hold my secret pain. Eventually, it was all that writing that would save my life, on multiple occasions. Writing is powerful therapy. When I was journaling I could always find and hear my “true voice”.

The bright light of beloved actor Robin Williams left our world Monday afternoon. He died a casualty of war. His life was lost during his epic 63 year battle with a brilliant, bruised and broken mind. Because Robin Williams was so well known and loved, his death has rocked our world and opened up a global conversation about mental illness. It’s a subject long overdue for discussion. It’s a subject “near and dear” to my heart; not by choice, but we usually don’t get to choose our battles and causes, they choose us. The brain disorders commonly known as “mental illness” are a part of my genes. You could say it was my “destiny” to have a brain disorder, since both sides of my biological family tree have suffered with and through all variants (both diagnosed and un-diagnosed) of depression, schizophrenia, bipolar disorder, panic attacks, anxiety disorder, OCD, borderline personality disorder, PTSD…and probably many others, lesser known or yet unnamed. Robin Williams lived 63 amazing years on this planet earth with a combination of bipolar disorder, anxiety disorder and related self-medicating addictions. His existence, like mine, was a beautiful and often chaotic tapestry woven in Chiaroscuro; Darkness & Light.  Many choose to focus on the tragedy of his death, and express their anger and pain associated with the circumstances. But, to me, his life is a brilliant miracle to be celebrated. Despite his daily battle with a terribly debilitating illness, look at how long he fought the good fight! Look at all that he accomplished! It’s breathtaking!

Like millions of others who mourn his loss this week, my life was touched for good by Robin Williams. His talent was awe inspiring. His versatility was stunning. His movies were always memorable. His antics were legend. Whether he was a doctor, an alien, a serial killer, an old woman or a genie in a bottle, he was raw and real and believable. He could make us laugh and cry and feel everything in-between all in the span of 60 seconds or less. How did he do it?!

His little spark of brilliant madness of course.

Robin Williams understood how to access & portray the full gamut of emotions, because he lived all of them, from one extreme to the other, every day. Trust me, I know. Like Robin Williams, I also live with the brain disorder called bipolar (aka the illness formerly known as Manic-Depression). Also like Robin Williams, my bipolar is the extra-special-high-octane variety called “rapid cycling“.

WHAT IS BIPOLAR?

Bipolar disorder is a chronic illness with recurring episodes of mania and depression that can last from one day to months. This mental illness causes unusual and dramatic shifts in mood, energy and the ability to think clearly. Cycles of high (manic) and low (depressive) moods may follow an irregular pattern that differs from the typical ups and downs experienced by most people.  – NAMI.org

Unlike Robin Williams, I am fortunate to never have developed any chemical addictions. My method of “self-medication” was writing/journalling, and of course singing/acting. I’m a very big believer in the power of using writing & music as therapy. It helped keep me alive for thirty years until finally learning that I actually had a medical condition [I wasn’t just  “weird” or “a bad person”]. I wasn’t alone! My epic mood swings could actually be treated!

Believe it or not, one of the happiest days of my life was when my doctor told me I had a condition called “bipolar disorder”. For me, I felt nothing short of liberated from a life prison sentence. The dark dragon lurking deep inside of me was finally being named, called out and given an eviction notice! I was validated! There was a reason why my mind had such strange racing thoughts and I experienced so many emotions, confusion and anguish. There was finally hope for better days ahead!

Many people diagnosed with a mental illness will need to go through multiple medication changes in order to find the right balance. It’s a very individualized process. There’s no “one size fits all” treatment plan. I was blessed to be referred to a good psychiatrist who found a medication that worked for me within the first 12 months of my diagnosis. I only went through two med changes. This is highly unusual, and I’m very grateful. That first year I was “in crises” mode a lot, but I was never hospitalized. Those first two years after my diagnoses was a critical period for me. I needed to understand and accept my illness, commit to take my meds “no matter what” every day, and to adjust to the “new me” that was slowly transforming through my medication and counselling. I didn’t feel comfortable. I felt dull and sluggish and life seemed “unnatural”, and almost claustrophobic. In truth, everything was becoming “normal” but I didn’t know what normal felt like. I’d never been “normal”. I was used to flying higher than a kite with extreme crashes from time to time. I thought I liked being manic. So, it was a very uncomfortable and even scary journey at first, discovering “me” without the mania. I felt “boring” and lifeless. My family reassured me over and over that I wasn’t boring & I hadn’t lost my creativity and sparkle…I’d actually just become comprehensible for the first time in years! It took a lot of courage to keep taking my medication and stay committed to my mental health treatment plan. After several months, I began to adjust and feel more comfortable inside my skin. After a year I began to see my life from a whole new perspective and glimpse all of my possibilities. It was a slow and gradual process of “becoming me”. I’m still evolving.

Sixteen years later, I’ve been living a very stable and productive life. My illness will never be “cured”. It will never “go away”. But, I am in control and it does not rule or destroy my life like it used to.

I don’t talk about my bipolar disorder much – not because I’m ashamed of it (what’s to be ashamed of?) but mainly because I’m not ill or in crises. This isn’t a hour-by-hour or daily struggle anymore. I’m a normal, average, fully functioning woman with a busy and productive life. Sure, I can get “feeling  a bit off” from time to time with my sleep cycle, which tilts me a bit toward the mania side. Or, when I’m faced with a particularly stressful event [like the hospitalization of my daughter] I can certainly get tilted slightly toward the depression side. But, I recognize it,  and I know how to take immediate action to get myself balanced again. Get more sleep, add more routine, go for a jog, etc. and then I feel back in balance.

During the early years of my diagnosis, I was shocked to find out that not everyone is as understanding, accepting or sympathetic toward a mental illness as they are about “Cancer” or “Diabetes”. Some people whom I considered my “good friends” actually shunned me after hearing about my bipolar diagnosis. They started to avoid me. They had excuses why we couldn’t meet up, or cancelled our lunch dates. I began to find out they had purposely not invited me to events and activities. They were treating me like I was suddenly contagious, dangerous, or someone to be feared. Here I was, the very same Holly that I had been all the days and years they’d known me before, and yet now they couldn’t see past the label of my diagnosis.

It was a heartbreaking experience to suddenly be abandoned and shut out, just because of my illness. I was already in this really vulnerable scary place, desperately needing support, and their rejection was a devastating blow. I would like to believe our society has changed in the past 15 years, that we have become so much more enlightened and understanding now that this wouldn’t ever happen to someone else. But, the truth is, change is slow in this area. We still have a lot of work to do to educate and enlighten our friends, families and communities about mental health issues and brain disorders. Please, choose to be someone who will stop spreading fear and start spreading kindness and awareness. Help break the stigma and end discrimination.

Today, I often forget about how life was “before” my diagnosis and treatment. It’s not something I really want to dwell on. Life is so good now, why live in the past? But, lately I’ve been thinking more about my story and wondering if it might be of worth to someone else out there. I’ve been given such a gift to be a survivor. Perhaps I have a duty to give back and share. I certainly would want to help or encourage someone else if I could. Yesterday after commenting on a friend’s blog post about Robin Williams’ illness I received a private message from a mother with a newly diagnosed bipolar son. She had read my comment and was actually taking the time to thank me!

“Reading your comments helped my glimmer of hope shine a little brighter! . . . I don’t want to force you to write – but you might be the right light for others who suffer.” – Amy

HOW CAN I BE “THE RIGHT LIGHT”?

As confident as I like to think I am nowadays as an adult human being [*snort], I still have a lot of trepidation about this one. I’m stepping way outside my comfort zone. This is really personal stuff. There’s a lot of “what if’s” in my mind. What if no one reads my blog post? What if everyone reads and unsubscribes from my blog? What if someone who knows me reads this and shuns me, or publicly humiliates me? Or conversely … what if a lot of people read and start messaging me for help?! Whew!  I’m not a “licensed” mental health expert. I’m not qualified to give medical advice, or tell you what is right for your particular situation. Every person’s illness and journey is unique to them – it’s important to remember that what worked for me might not work for you or your loved one. However, I do have a lot of knowledge about mental illness from both my first-hand experience (my self and my loved ones), and also through the amazing educational support network of NAMI.

• If you need to know that people with mental health struggles “make it”, then I’m happy to be a visual aide.
• If you need resources, I can point the way
• If you need hope, let me hold your hand ‘virtually’ and tell you that “yes, this sucks, but you are stronger than you think. You can fight this battle, one step at a time, and you can win.” And someday you will even be grateful for your unique “brilliant madness”.

I’m alive, and I’m not just surviving, I’m thriving.

I succeeded to live through the years of darkness. The credit belongs first and foremost to God, and to my incredible network of support – a loving husband and concerned family (my ministering angels), proper medication, good therapy, and a personal commitment to my mental wellness. My life has been a series of miseries and miracles. I wouldn’t trade it for another life in a million years. It’s all mine, the good the bad and the ugly. It’s a messy, imperfect, beautiful life. Or, as a new friend recently put it, “A Dark Beauty”.

My Favorite Things

For those of you who are searching for Mental Health information and help for yourself or a loved one, here are some of “my favorite things” that helped me come back from the brink. These are just some of the things I truly could not have lived without.

1. My Journal

I’ve already talked about this one a lot, but I’m putting it on “the list” because it’s so important. I can’t encourage you enough to journal your feelings, thoughts, and document the process of this journey. Whether you are someone diagnosed with a brain disorder, or on their support team, I encourage you to write about it.

2. The Book A BRILLIANT MADNESS  by Patty Duke

If you are as old or older than I am then you probably know who the actress Patty Duke is. A famous child actress during the 1950s-1960s, Patty won an Oscar at age 16 (the youngest recipient at that time) for her portrayal of Helen Keller. If you don’t know Patty Duke then you will probably know her brilliant actor son, Sean Astin (aka “Samwise Gamsee” in Lord of the Rings). Patty Duke was diagnosed in 1982 with bipolar disorder. She wrote a groundbreaking book about it and has devoted her life to advocacy and education of the public on mental health issues.

When my kind, caring wonderful family doctor broke the news to me about my bipolar disorder I was in full-blown mania. Just two weeks before I had come to him for help, admitting I was feeling very depressed and having scary thoughts about possibly harming myself or my children. He thought it was probably postpartum depression. He prescribed Prozac, which would have worked very well if I actually had depression, however if you give Prozac to a person with bipolar disorder it can quickly swing them out of the Depression and up into Mania Never-never-land. Which is exactly what happened to me, of course. I didn’t sleep for 5 days in a row. I was up all night scrubbing the tiles on my kitchen floor with a toothbrush over and over, polishing and re-polishing the bathroom light fixtures and vacuuming endlessly. I reorganized all of my cupboards into alphabetical order. I went for jogs at 2 am, and cleaned out the refrigerator at 4 am. I was on “high speed” mode, talking so fast that no one could understand what I was saying … and then laughing uncontrollably … and then crying uncontrollably … and then yelling uncontrollably … yep. I was super manic. It felt GRAND at first to be on such a long “high” after being in such a deep “low”. Until it got scary. Because, being manic is truly terrifying. To me, it’s worse than being depressed – and of course, depressed is bad, but when you are depressed you are laying in bed not moving and not able to function. It’s horrible. But, it’s fairly safe, as compared to being out doing all these crazy scary dangerous risky things that happen during the Mania. There’s no filter for what you might think or say or do or believe you’re capable of. Rules, laws, morals, conventions and laws of gravity don’t apply to you because you’re invincible. You think you can drive as fast as you like, say or do whatever you wish, charge as much as you like on credit cards . . . all with “no consequences”. When you’re manic, if you get the thought in your head that you can fly, you won’t stop to think about it, you’ll just jump.

That’s mania. It’s a big adrenaline rush building up and up and up right before the huge train wreck. And then, when the mania finally ends, down you’re thrown into the darkest pit of despair equal in depth to the height you were just flying at. That’s bipolar. It’s exhausting. It’s devastating. It’s impossible to live like that over and over without starting to look for an exit. I went through this kind of “cycling” for nearly 20 years and barely survived. Perhaps you can better understand my awe for Robin Williams to continue battling that cycle for over 6 decades!

So, there I was back in my dear doctor’s office talking a mile a minute and laughing and crying simultaneously while he kindly and patiently explained my diagnosis, then went into his office and returned with Patty Duke’s book which he gifted to me with the assignment to go home and read it. The story of actress Patty Duke and her desperate struggle and eventual triumph with bipolar disorder is written as part-memoir and part self-help / medical guide. The book is as entertaining & fascinating as it is educational. The book was a miracle for me. It was exactly what I needed to hear presented in a way that resonated with me. Patty taught me that I was not alone. She taught me that having a mental illness is just the same as being diagnosed with any other kind of serious illness like heart disease or diabetes which must be monitored daily and treated for life in order to prevent regression. Patty taught me that if you commit to taking your medicine faithfully, every day of your life, and accept your illness will be your responsibility to manage for the rest of your life, this commitment will allow your mind and body to heal and stay strong. However, Patty effectively warns the danger in quitting your meds because you “feel fine now”, or because you “don’t like the way it makes me feel”, or any other reason. You’re going to be in big trouble and every relapse makes it twice as hard to heal again. Thanks to Patty Duke, I made the commitment from the first day of my diagnosis that I would never stop taking my meds or change dosages without consulting with my doctor, and I committed that I would be actively involved in being well. I would never think that when I felt “better” that meant I was somehow “cured” and didn’t need my meds anymore (this was  a much more difficult commitment at first than I thought it would be).

There is no cure for mental illness (yet). There’s no “sudden miracle” or “magic pill”. This is a daily commitment and a life long battle. But, there are wonderful treatments and great support groups. There is so much more available right now today than I had 20 years ago! And, I certainly had much more than my sweet Grandmother who suffered with clinical depression for the last 3 decades of her life with limited information and options. So, we are making progress each generation!

2. A Good Psychiatrist and A Trusted Therapist

This is your A-Team. You’ve gotta have some expert help medicating and navigating you through this illness. You deserve the very best. Research your illness, Do some homework, get referrals. You can contact your local NAMI office for help. Whatever you do, PLEASE DO go get help immediately from medical professionals! Mental illnesses are treatable, but they are also degenerative if they are left untreated or not managed properly.

3. Supportive Loving Family and Friends

I am blessed to have a very loving and supportive husband who stuck by my side through hell and back. I have caring & concerned parents. I have a few trusted friends to confide in. These people are my angels. When I was at my very lowest point and could barely lift my head off my own pillow my support team stepped in and rallied around me. While I was sleeping through med changes and recovering my strength these are the people who cleaned my house, took care of my babies and did who knows what else to keep things going so I could heal and build my strength. These are the people who quietly listened to me cry or rage or mumble. These are the people who cheered me on and believed in me when I didn’t believe in myself. They prayed for and with me. They were patient with my healing process. They didn’t expect me to heal faster than I could. They didn’t judge. They simply loved me and believed in me.

YES, Family and friends count! YOU MATTER to someone. YOU can make a difference! It’s hell watching someone you love suffering, going up and down on an emotional roller-coaster, sometimes yelling at you or having a complete emotional meltdown. This illness is not pretty. Please don’t give up. Hold on. It’s going to get better. It’s not a fast fix. It’s going to be months, and possibly years, before things start to really stabilize and turn around. You’re going to have to commit to stay in this for the long haul. Your calm and reassuring presence, unconditional love and compassion can make all the difference.

4. NAMI – What I wish I had then, but thank God for now

The National Alliance of Mental Illness (NAMI) are advocates for change and hope. They offer free support groups and educational classes which are life changing. They lobby and advocate for mental health rights. They break down barriers and build bridges. I cannot say enough good about these people and their program. Courses are run by volunteers who are just like you and me with real-life experience who are trained to teach the classes, advocate for you and help you navigate through this challenging emotional, physical, financial and often legal journey.

We are not alone. It’s time to break the silence. I hope by telling my story, I can help someone else cope with mental illness and to overcome these devastating brain disorders. There’s so much to live for and look forward to! – MoSop

IN CRISES? DON’T BE ALONE. CALL 24/7 : 1-800-273-8255 (TALK)

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