Dissociative Disorder & Me

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IT BEGAN in the EARLY 1980's

Large chunks of time were lost to me. In church or work related meetings, I wondered where I was and how I got there. While washing dishes and looking out my kitchen window, everything seemed unfamiliar. Familiar people looked like strangers to me, and places I knew well blurred eerily into strange locations.

I'd always thought of myself as strong and focused, able bodied and capable. These frightening changes in perception swiftly moved beyond my control until the happy, smiling, well-adjusted woman in the picture here disappeared. (Don't worry. That woman has returned!!)

By writing this lens with honesty, I hope my experience will help others deal with Dissociative Disorder, or help their friends and loved ones understand it.

This lens has been blessed by Squid Angels 

THANK YOU, ANGELS!!

To my faithful readers..

If you've read my other lenses, you know my philosophy. I try to mix life's bitter moments with the sweet and see the bright side. Dissociative Disorder can be a bewildering struggle, but also has it's positive impacts. I hope to show both sides here.

IF MY DIARY COULD TALK..... 

I use a diary or journal to identify patterns or problems that might otherwise escape my attention. Concentrating or lack of same is an everyday problem. Writing down problems I encounter helps me resolve them in practical ways. I share here a few random observations.

JUNE
I saw the first oriental cockroach today and spent hours fighting the urge to scour my house and myself into oblivion. The exterminator swears these bugs are not the kind that propogate wildly and infest homes, but a bug that just occasionally finds its way into the house. I paced and muttered and gagged, searching for more until Ron took up the hunt so I would relax. Maybe I'll settle down for awhile if we don't see any more bugs. Dow Bathroom Cleaner (Scrubbing Bubbles) kills them so will make sure I have a new can on hand this summer.
JULY
We went to WalMart today and I had a particularly strong bout with anxiety. I learned long ago not to weep and wail like a lost child -- which is what I always feel like doing -- but can't seem to overcome the icy cold sweats in crowded places. The check out clerk kept asking me if I was OK and suggested I sit down. I told her to just ignore me. Hate to make such a public mess out of myself. Icy sweat poured off the ends of my hair and dripped onto my shoulders while paying for the groceries. Honestly? I'm not sure if the anxiety kicks in because of being in a crowded place or because food prices have gone sky high. I'll have to think about this one awhile.
AUGUST
I'm always so thankful to survive summer until August. I can see fall in the near future, then blesed winter. This morning was pleasant and breezy so I sat outside under the trees awhile. Nice, but the gnats, mosquitoes, and flies finally drove me into the house. And, of course, I have to check myself repeatedly for hours in case a tick fell on me from the trees. Just thinking the word "tick" can send me into a frenzy, imagining them crawling in my ears and hair. Still, there was a time I couldn't enjoy a pleasant morning at all so I'm thankful for the progress.
SEPTEMBER
42 degrees this morning. OH what JOY!!! I took a walk around the grassy acre today and visited Gray Mama's grave. She was so sweet and loving. Usually I cry so seldom visit her grave, but today I did OK. The air was crisp and breezy, nary a bug in sight, and walking felt good. A small glimmer of hope sparked with this change in seasons. Another month or so of this and I'll be almost normal again.

diary clipart from Clipart Guide

WHAT WERE the CATALYSTS of MY CONDITION?

In retrospect, I believe grief, stress, and mental / physical / emotional exhaustion conbined were the main culprits.

Each loss of a major anchor of my life exacerbated the symptoms, or caused new ones.

I didn't allow myself to rest and recuperate after traumas.

I tried to get by on my own strength alone until all physical and emotional energy reserves were completely drained.

I didn't seek the help and support needed until it was too late.

THE FIRST SIGN 

Changed my world.

One early winter morning, my mother called and asked if I'd take her to a doctor appointment. When I arrived to pick her up, she said, "I want you to know before we leave why I'm seeing the doctor."

She pulled up her blouse, took my hand and laid it along the underside of her breast. A raw wound the size of an orange grew there. My eyes saw it, hand touched it, but my brain withdrew in disbelief. I felt my mind short out and shut down. The woman, daughter, Registered Nurse in me could not accept that my mother had advanced cancer.

She'd lived with this malignant tumor for months, allowing it to grow, waiting to see the doctor until she had Medicare.

I'd already been mildly dissociating from weariness and stress. This episode exacerbated what might have been a temporary mental condition.

This photo shows how I felt that day -- fragmented, confused, shattered into a thousand pieces.

"Large pieces of reality simply disappeared.
My world lost its familiar parameters.
I lost myself."

MY SYMPTOMS in the ORDER THEY OCCURED

These came and went in varying degrees of intensity after the day I saw and felt my mother's cancerous tumor:

Depersonalization

Multiple Identities

Dissociative Amnesia

Fugue State

Phobias

3 YEARS of ??? 

I don't know what to say about those years following Mom's surgery.

I worked a full time job as the Education Coordinator at our local hospital, took Mom to and from radiation and chemotherapy treatments. I socialized with my friends, and maintained life as usual with my husband, co-workers and siblings, but still can't remember most of it.

My perceptions of everything around me were distorted. I felt totally detached from myself and my surroundings. By all appearnces, according to those close to me, I functioned more or less normally, but I was physically ill much of the time.

I knew something was wrong but couldn't effectively verbalize my needs. Treating the physical illnesses didn't stop my mental symptoms.

Mentally, I continued to lose touch with reality. The picture here shows exactly how I felt -- like part of me was separated from the whole, missing.

AMNESIA

While doing Mom's laundry I woke up on the floor of my basement, did not know who or where I was. Did not recognize my husband when he found me. Did not remember any part of my history, family, or friends. This was in October 1984. Mom died in December the same year. Once amnesia set in, other dissociative symptoms hit fast and hard.

I TRAVELED and LIVED with IMAGINARY PEOPLE 

Not all of them were kind

Once amnesia set in, I was a blank slate, learning life all over again.

I couldn't remember how to make coffee or cook the simplest meal, didn't know where anything was located in my kitchen.

When friends came to visit, I pretended to know them. I learned to smile instead of sitting blankly so they wouldn't look at me with shock on their faces.

I didn't remember anyone in my family -- mother, grandmother, husband, or siblings. For several weeks I stayed in seclusion because my reactions in public were childlike and unpredictable.

I called my multiple personalities imaginary people. Although my mind was shattered, I still refused to let them tell me what to do.

After seeing no improvement in three weeks, my attending physician suggested admission to a psychiatric facility as an inpatient. My imaginary people went with me, all clamoring noisily for attention and dominance.

MY IMAGINARY PEOPLE

The little girl -- sweet, childlike, in need of nurturing, demanding attention, wanting to play and have fun.

The praying nun -- prayed or sang 24/7, quoted scripture, desired seclusion.

The wild woman -- wild-eyed, disheveled, profane, aggressive, and determined to be in charge. She was strongest of the three.

A semblance of me -- quiet, bewildered, reluctant to let any of the other three dominate despite their insistence

MY INK BLOT 

The Rorschach Test and Music Therapy

The Rorschach test was given within the first few days of my stay at the psych unit. None of the ink blots registered until I saw the one pictured here. My reaction was swift and scary because I cried for hours after seeing it. No one ever explained why I had that reaction. Maybe they didn't know.

I can't remember the type of music played during therapy. It had Gaelic qualities, haunting and soothing at the same time. This therapy occured at night in a dimly lit room with me lying quietly in bed. One night my mind went blank and I began to cry. I can't remember anything until the next morning when the psychiatrist said, "We've finally had a breakthrough. Now we know the root of your problem."

He explained that most cases of Dissociative Disorder stem from trauma or physical, mental, emotional, or sexual abuse and that music therapy often releases those memories.

AFTER the PSYCH CLINIC, TIME PASSED 

Time and Treatments

My inpatient stay at the psych clinic was a godsend. It took me out of a chaotic world and provided a place of quiet introspection.

My imaginary people didn't like it there because one, the staff helped control them and two, I felt stronger and less bewildered in that quiet place.

The staff evaluated me through Rorschach testing and showing me pictures to see my response. They also questioned my husband and closest friends to learn about my work and interests. My treatment plan included psychotheray, music and art therapy, and physical activity.

The breakthrough came during music therapy. I wasn't cured, but my level of effective functioning improved greatly. A bit of light and hope began to penetrate.

AMNESIA for 8 MONTHS, FUGUES & PHOBIAS

I fought my imaginary people for dominance, and won.

My phobias took over in their place -- fear of germs, bugs, crowds, blood, walking outside, being thin -- and caused debilitating anxiety attacks,

I got lost while driving and couldn't find my way home.

I drove from Kentucky to Kansas, alone, but thought someone else was driving.

Was my hope for improvement and a halfway normal life even possible?

Yes, I can testify that hope and normalcy are possible!!

THANKS to ALL MY "KEEPERS"

I smile while writing this.

Since for many years I was prone to wander off and get lost, a couple of my friends became what they jokingly called my "keepers." That gave my poor beleaguered hubby a break. I voluntarily stopped driving for safety reasons, so my keepers took me places -- shopping, lunch, on short pleasure trips.

Thanks Sam, Eldeen, Nancy and hubby for being my helpers, protectors, and keepers until it was safe for me to drive again.

HOW I LIVE WITH DISSOCIATIVE DISORDER 

It took a little time and adjusting my environment

I've lived with Dissociative Disorder for 28 years now and most of what I've learned came from trial and error.

Medications did not help me in the slightest so I had to learn coping techniques over time.

I can still be productive and creative, but have to monitor my stress levels and physical tiredness carefully. If I get too tired or stressed, I detach, depersonalize, or have a whale of an anxiety attack.

I voluntarily gave up nursing because it was the only practical thing to do under the circumstances.

I maintain a peaceful, uncluttered environment because that keeps me centered and focused.

If I'm feeling "off" at any time, I stay home where it's quiet.

I'm honest with family, friends, acquaintances about DD. I'm not ashamed of my condition. I broke down and can't do some of the things I used to do. But I'm still a productive, functioning human being. That's the crux of it.

Today I'm safe and smiling. Some days I muddle through. Most days I triumph.
Dissociative Disorder did not beat me and it does not have to define your life, either. You are stronger than you realize.

MOST OF MY MEMORIES RETURNED INTACT

Slowly, over time, those precious gems of my past returned.
"From memory's scattered fragments, scraps of emerald, amethyst, and pearl..."
quote from a poem by William S. Trout

Advice from one who's lived it.

Accept support from friends and loved ones.

Don't let scary symptoms dominate your life.

Spend quiet time thinking about what will help you get through each day intact.

If you feel lost, confused, or have a history of wandering during fugue states, stay home.

Control your environment, not the opposite.

Don't be ashamed of having a mental disorder.

Smile, be kind, and educate others in hopes they'll pass that on to someone else.

A WORD to the WISE

If you have symptoms of a mental illness, or know someone who does, see a medical professional immediately. DO NOT try to muddle through on your own.

My problems increased because I ignored the early symptoms & thought I was tough, believed I could get well without psychiatric help.

I know the financial cost of psychiatric care is a worry. If you're concerned about that, contact me. Been there, done that, bought the tee shirt!!!

Don't struggle needlessly. Seek professional help.

TODAY

Summer is the worst time for me. I struggle in summer because of a phobia for insects of all kinds.

I imagine germs are more prevalent in summer so spend a great deal of time and energy sanitizing surfaces.

I have more anxiety attacks in summer, but they aren't as frequent or strong as they were 20 years ago.

I've learned how to manage the symptoms so no longer need to see a therapist.

I know my symptoms won't actually harm me, that I've survived and will continue to survive.

LET ME KNOW WHAT YOU THINK. 

If you need more information than what I provided here, feel free to contact me.
If you need support and don't know where to turn, I'll be glad to help in any way I can.

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  • Reply
    thesuccess thesuccess Dec 3, 2009 @ 7:41 am
    Wow, You sure can do a great lens!
  • Reply
    JaguarJulie JaguarJulie Nov 30, 2009 @ 7:04 am
    You are quite brave my dear. I know your story has touched many of us -- and leave us at a loss for the right words to enter here in your guestbook. May your journey be a blessed one.
  • Reply
    Joan4 Joan4 Jul 18, 2009 @ 10:28 am
    Oh Lollj! What a horrific experience for you and your family -- and what tremendous courage and honesty you have -- Thank you for sharing this experience. I can just envision all the people around the world who will receive hope from reading your story. I am so happy that you were featured with this lens today on Squidoo Lens Reviews. Happy Birthday! Blessed with thanksgiving for you by a joyful angel!
  • Reply
    GrowWear GrowWear Jul 17, 2009 @ 12:00 pm
    Lolly, my heart goes out to you. You are a survivor, indeed. Much health and happiness to you, your hubby, and those three wonderful "keepers."
  • Reply
    aj2008 aj2008 Jul 17, 2009 @ 7:48 am
    Lolly - I am so glad I have found this lens. What you must have gone through! This lens is so well written and illustrated and a great example of a quality writing for this topic.

    SquidAngel Blessings to you.
  • Reply
    Jun 19, 2009 @ 10:39 pm
    very well done, im sorry to hear you had to go through that, it is never easy, but you learn alot, especially about yourself going through things like that.
  • Reply
    Frankster Frankster Jun 7, 2009 @ 10:15 am
    Lolly, your story is so well written that I read every single word. I know it will help many people and I thank you for sharing it so honestly. It was also wonderful to know that your support system stayed in place. I think that's a big worry among people who suffer illnesses. Thank you also for sharing your insights. I'm not a squid angel, but I bless you too! Bear hugs, Frankie
  • Reply
    Bette Taylor Bette Taylor Jun 6, 2009 @ 7:49 pm
    You are one amazing woman. I always knew that. Now...I KNOW that. There are times when I wish I could be DD. It is a wicked world. Love you. Know that.

    Love, Bette
  • Reply
    matt arnold matt arnold May 25, 2009 @ 11:12 pm
    Man, what an intense tale. Thanks for sharing.
    Do you still enjoy reading? You read and wrote amazon reviews for my two novels (Crossroads and An Open Universe). I just published a third, about an obsessive-compulsive mute who suddenly begins speaking at 32, the adjustments and relationships in his life after this, and his search into why he never spoke. I lost your email, and couldn't find you on the midwest review but came upon this. Send me an email at GraniteMountain@comcast.net if you'd like a copy of the new novel....m
  • Reply
    DougP DougP May 25, 2009 @ 8:24 am
    If the reason for creating this lens was so that others could recognize this disorder and understand those who suffer from it, then you succeeded mightily, and five stars for that!
  • Reply
    May 11, 2009 @ 9:56 am
    very well written, im sorry to hear about what you had to go through, but i am glad that you shared it, that takes a lot of courage
  • Reply
    lollyj lollyj May 2, 2009 @ 7:02 am | in reply to Scout59
    I'm so happy to hear your positive report, Scout. In so many ways, life is better for me now, after the onset of DD, than it was before. I know my capabilities, know I can be in control of my situation and that the DD symptoms are just a small part of my life like aging and the weather. I firmly believe we create our own happy endings and it sounds to me like you have done exactly that. Big hugs to you.
  • Reply
    Scout59 Scout59 May 2, 2009 @ 1:53 am | in reply to lollyj
    Even though my career ended sadly, I know because of having been hurt so badly from such a young age until about 18-19 yrs of age, I NEVER hurt one of my students. And
    I/We made learning fun; the kiddos wanted to come to school. Most of them are grown & having families of their own. But, when we see each other in public, out come the bear hugs. I know good
    solid bricks were laid in the beginning of their educations. (10 yrs in 1st grade)
    Initially, losing the career for which I had worked so hard, led to deep depression & worse. But, now, since I've had time to focus more on healing and exploring what I CAN DO with the rest of
    my life, I know that there are purposes/reasons for everything.
    Thank you so much for sharing your coping skills; they are right on! I wish all those w/ dissociative disorders would use them. I am one who believes in, what we like to call unification or
    wholeness. And since my T & I have worked together so long, I/'We'll make it. TY
  • Reply
    lollyj lollyj May 1, 2009 @ 7:24 pm | in reply to Scout59
    That's a sad story, Scout, and a fairly typical response to mental illness.
    After the onset of DD, my friends, doctors, and co-workers looked at me with almost horror. They couldn't believe I was so fragile that I cracked up. But it can happen to anyone at any time. Mental illness is not a disease of the weak. Even the strongest among us can fall.

    I was luckier than you. Everyone where I worked knew about my illness. My boss created a modified job position for me when the doctor said I could try returning to work. I had lots of love and support, and eventually resumed my profession. In the end, though, I had to manage my own life and work around DD. I hope life is better for you now.. Thankis for stopping by and leaving a message.
  • Reply
    Scout59 Scout59 May 1, 2009 @ 4:59 pm
    Thank you for writing publicly about DID. I, too, have on the same journey since my late 20's.
    Finally, in July of 1991, a teaching colleague told me that if I didn't do something about me, she
    would. She suggested a psychologist with whom she had sought treatment. At first, I only saw him every 2 weeks; we spent almost the first year in discovery.
    And I, too, finally needed to be hospitalized. I was then formally diagnosed and began to see my T
    every week. I was still teaching at this point...school year '92-'93. After about 6 years, a new superintendent was hired. The summer before, I collapsed in my kitchen from heat exhaustion &
    was taken to our local small town ER. When I awoke, I "came back" as one of my 5 yr olds.Someone in that ER let it out to the public in this small town. By the end of '97-'98 school yr,
    my principal & this supertintendent managed to convice the shool board to non-renew my contract. So, I agreed to resign, but had to teach until the end of the year.
  • Reply
    tandemonimom tandemonimom Apr 25, 2009 @ 7:09 pm
    What a terrible disorder! Thank you for sharing your story to help others.
  • Reply
    Spook Spook Apr 25, 2009 @ 3:17 am
    I admire your honesty and your courage. Excellent lens and keep up all the great work
  • Reply
    Janusz Janusz Apr 13, 2009 @ 4:05 am
    Such a Brave lady deserves an Angel Blessing :)
  • Reply
    Janusz Janusz Apr 13, 2009 @ 4:05 am
    Such a Brave lady deserves an Angel Blessing :)
  • Reply
    WhitU4ever WhitU4ever Apr 8, 2009 @ 5:39 pm
    I just happen-chanced upon this lens, but I don't have time to read it yet. I can't wait to read it! ~ Whit
  • Reply
    mysticmama mysticmama Apr 6, 2009 @ 12:13 pm
    Thank you for sharing this moving personal story and welcome to the sharing hearts group!
  • Reply
    Eldeen Eldeen Mar 22, 2009 @ 5:13 pm
    I remember that time well and rather enjoyed (enjoy) being your keeper. :))
  • Reply
    Joyce Scarbrough Joyce Scarbrough Mar 13, 2009 @ 1:42 pm
    Laurel, I always knew you were a special woman. Now I know just HOW special you are. This is beautiful, inspiring, and should be shared with the world.
  • Reply
    lollyj lollyj Mar 4, 2009 @ 10:45 am
    Thanks so much to everyone for visiting my lens and leaving a comment. I appreciate the support.
  • Reply
    stevie10772 stevie10772 Mar 3, 2009 @ 11:20 pm
    Lolly: It takes tremendous strength and courage to go deeply inside and explain the facets in such detail as you have done of DD so that others can understand. You are giving the public such a rare and exceptional gift. I can only imagine delving inside to recapture those early days in order to paint the picture for those of us who have not had to endure such catastrophe. The inner strength to face such memories takes great fortitude. That is your priceless gift of vulnerability and openness, a gift indeed.

    Thank you for this treasure. Understanding opens eyes and minds, and you may be very pleased and proud of yourself. I know it is hard to be open to raw times, to lay every thread on the table, yet you are the gift in this case. The gift of yourself is gold. ~ Stevie
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MORE INFO ABOUT DISSOCIATIVE DISORDER 

You can find symptoms, treatments, and info about medications here:
National Alliance on Mental Illness
You will find support links and helpful information here.
If you need information, this is an excellent resource.
Mayo provides information in terms any lay person can understand.

Books about Dissociative Disorder 

FRACTURED MIND, A: MY LIFE WITH MULTIPLE PERSONALITY DISORDER

Amazon Price: (as of 12/07/2009) Buy Now

Beyond These Walls: The True Story of a Lost Child's Journey to a Whole Life

Amazon Price: $16.95 (as of 12/07/2009) Buy Now

by lollyj



Dissociative Disorder did not cripple my life and does not have to cripple yours. Since my first dissociative symptom almost three decades ago, I'... (more)

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