My IOCDF News Letter Article Submission: Alexandra’s Journey to Recovery

 

Alexandra’s Leap of Fate;

A Journey to Recovery

I am the mother of an amazingly kind, witty, charismatic, 13-year old daughter, Alexandra. Until recently, Alexandra was plagued, for years, by extreme, debilitating OCD. As these years passed, slowly and painfully, she, and I, have endured innumerable manifestations of this horrific illness. She had become convinced, after nine years of inept treatments and constant suffering, she’d never be freed to, once again, walk amongst  the “land of the living” but be destined to forever endure a lifeless, fear-riddled, solitary existence. The apex of Alexandra’s extraordinary journey seeking freedom from her ubiquitous obsessions, compulsions and rituals is marked by her recent, hard earned, astonishing ascent from the subterranean bowels of the OCD Hell she’s inhabited for as long as she can remember to being catapulted back into the light of day to reap the rewards of a new way of living: one devoid of terror and filled with opportunities.  Little did we know Alexandra’s road to recovery would begin with the help of a relatively new form of technology known as an “app” and the aid of a highly specialized OCD specialist, hundreds of miles away?

Our journey began on an evening like any other.  Shortly before turning 4, I read Alexandra a bedtime story and off to sleep she went. To my astonishment, overnight, upon her awakening, she was different. Different as she began endlessly, verbally obsessing over peculiar topics. I immediately scheduled her with a pediatrician and exclaimed upon arrival, “I think Alex is having compulsions!” The freshly graduated MD was quick to correct my inaccuracy as ‘she was experiencing obsessions not compulsions.’  I, like most of the general population, had very little knowledge of Obsessive Compulsive Disorder. I vaguely recalled seeing Elizabeth McIngvale on Dr. Phil years before, but that was really the extent of my knowledge about OCD.

Unable to find her help at such a young age, Alexandra’s obsessions and compulsive rituals worsened.Trying to keep up as they switched, morphed, left and returned so fast, I felt as though my mind would simply implode! Her symptoms were ever-present, unless someone else was watching. Everything had to be “equal.” All furnishings were to be squared off against the walls with no spaces remaining.  It could take her 20 minutes to walk across our 8’x10’ patterned living-room rug. Alexandra also struggled with bouts of Trichotillomania, skin-picking, hoarding, and magical or superstitious thinking which caused her to do any number of repetitive behaviors.

At one point, she developed an intense fear of blood or anything related to blood (knives, guns, people’s tattoos, pictures on t-shirts, CD/DVD cover pictures, TV shows and commercials, etc).  Even the spoken word, sight, or anything colored red would catapult her anxiety into a state of panic. Not understanding how best to help her and not seeing any other options, I hid all the knives in the house. I cut her food when she wasn’t looking and basically tried to do whatever possible to protect her from the things which would trigger her crippling anxiety.

Throughout the following years, Alexandra received several evaluations and extended ‘therapies’ but her condition continued to steadily decline.  At only 7, Alexandra was even admitted into a well known pediatric psych unit for treatment but it, too, proved unsuccessful. Her formal diagnosis of OCD wasn’t until she was 7 and by 8, she was diagnosed with PANDAS. I wrote the following poem entitled “Mommy’s Cry’s,” venting the absolute frustration, sense of hopelessness and helplessness I felt being unable to stop my child’s merciless suffering.

Make this three-lettered evil go away

I just need to cry, fall upon my knee’s

Let me hold my precious child, comfort all her needs

Can’t anyone help us, please?

“You can’t touch me mommy

For surely I will die!

 

No mommy, no, don’t touch me,”

Echoes within her mind

…She cannot be touched

Any germs will kill her dead,

That is what she hears

Deep within her own head

 

Someone, please help her

She is inexplicably entangled

Wound tightly in a web

As if in an endless, awakened dream

And all that’s left are the silent screams!

A dream where all reality has been lost

A web of steel she has been embossed

 

And all which remains

Are those horrific thoughts

Which no matter the effort

Can’t ever seem to be tossed

 

My child I knew so well

Has somehow ventured into a deep mental hell

A place of darkness and dread

‘Can’t cross the blue line before the red!’

Where has this ever-present nightmare led?

 

All MUST be Equal or Odd!

Mommy,”The crack’s in the sidewalk will make you die!”

How could this not make you cry?

I listen as she scrubs off her invisible enemies

After which, her perfect fair toned skin is mutilated, raw and dry

Outside the bathroom door, I silently cry & cry

 

Help her Heavenly Father, I would often pled

“Make her life worth living; help her forget this tragic past

Prove her wishes and dreams for a future aren’t really dead”

But with each of the 9 passing year’s exponentially worse than the last

I must resign to silently scream inside my own head

 

What happened to my child?

I know she’s STILL THERE

Surely, the real she is not dead

It is just that she is trapped

Trapped within her own head

By the age of 9, Alexandra became convinced a neighbor child was deathly contaminated. As these fears quickly generalized, her almost 4-year battle with full-blown contamination fears began.  Ultimately, the pinnacle of Alexandra’s contamination fears became centered on her school.  Until recently, her decontamination rituals upon returning from school were seemingly endless.  Her showers took 4+ hours and caused her physical, psychological and emotional agony and anguish.  She had to scrub under her fingernails until her fingers were raw where there once were nail beds.  She washed her eyes and nasal passages with soap to the point of blurry vision, burning sinuses, and a loss of smell.  She violently brushed her teeth resulting in permanent enamel loss.  With Alexandra’s insistence, I decided transferring her to a new school could possibly eliminate these dangerous, self-harming rituals.  Although this strategy offered some temporary relief, her symptoms quickly worsened again.

Having been immersed in the OCD community and desperately seeking help, I learned of the Live OCD Free app. Still in beta testing, Live OCD Free was accepting applications for research participants.  I quickly contacted Dr. Mulcahy regarding the possibility of Alexandra becoming a research participant.  After describing Alexandra’s symptoms to Dr. Mulcahy, she felt intensive treatment was advisable. Given the severity of her symptoms, she was very reluctant for Alexandra to rely solely on the app for treatment.  After explaining, these intensive treatment options were considered “out of network” with her insurance policies refusing any coverage compounded by my inability to afford specialized treatment with a qualified professional or at a residential program, she agreed to get us started using the app.  At this point, we all took an enormous leap of faith, hoping the app would help.

After 3 months of periodic Skype sessions between Dr. Mulcahy and Alexandra and consistently (although highly reluctantly at times) doing her ERP assignments, I am ecstatic to report, she is now able to move about our home, touching everything freely.  Unable to enter her bedroom for months before the app, she is now sleeping in her own bed.  She is able to hug friends and family who were previously “untouchable.” Alex  can, now, also ride in the car (which has traveled back and forth to school) without showering.Additionally, her showers now take only 25 minutes…with no ritualistic behaviors. Her sense of smell has returned and her eyes are, no longer, bleary. In short, in exchange for hard work doing ERP,  her life is being returned.

Alexandra’s progress is truly astounding, and I credit it to our, finally, being provided a systematic approach to strategically attack Alexandra’s contamination fears through exposure and response prevention.  With the help of the Live OCD Free app, Alexandra has been able to be very independent with her treatment, taking more control over her OCD than I ever anticipated.  The app has also allowed us to work in a very efficient manner, using only periodic check-ins with Dr. Mulcahy via Skype.  Although Alexandra still has work ahead to regain complete freedom from her OCD, we are confident she will make a full recovery.

Alexandra and I will be forever grateful to the Live OCD Free app and Dr. Mulcahy for guiding us toward a life of hope and freedom.  I believe destiny and a true leap of fate are responsible for Alexandra’s remarkable progress. Seeing for myself how lives can be transformed with proper treatment, I am now considering a career change into the field of OCD therapy. We think Alexandra’s story offers much hope for others who are struggling and may, hopefully, play a small role in ending OCD’s tyrannical rein.  For this reason, s he wishes to share her OCD journey with others.  If you are looking for inspiration, please watch Alexandra’s first video chronicling her journey toward OCD freedom at WWW.LiveOCDFree.com and YouTube.com/LiveOCDFree.  We sincerely hope you or anyone you know who is struggling with OCD will join Alexandra on her quest to live OCD free.

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Submitted June 10, 2012

Live OCD Free App Now Available

 

 

 

New Options for OCD Sufferers, Therapists & My Daughter

Live OCD Free is a new, revolutionary mobile therapy application which brings Exposure and Response Prevention into your own hands or the hands of your patients in a new and highly effective way. Currently, the app is available for iPhones, iPod Touch and iTablets and will next be launched into the Android market. The Live OCD Free app makes homework easier, holds patients accountable, and enables therapists to track and analyze their patient’s progress. The app can be purchased at the iTunes store for a one-time investment and more can be learned on the LiveOCDFree.com website.

Live OCD Free is ideally suited to help both individuals (adults and children) and professionals alike be more efficient and achieve faster results. Live OCD Free helps individuals and therapists to be more efficient by assisting the OCD sufferer in designing a uniquely personalized Exposure and Response Prevention treatment program. If the OCD sufferer is working with a therapist, all the data stored in the app can be easily emailed to the therapist thus enabling an even more fine-tuned treatment plan.

Live OCD Free helps children and adults gradually face their fears by creating a series of exercises or challenges to practice on their iPhones, iPod Touch and iTablets. These exercises empower users to resist the urge to give in to compulsions, tackle excessive or intrusive thoughts in a manageable way, and reduce anxiety in just a short period of time.

The Live OCD Free app features:

• An individualized ERP program

• Assistance working through exercises
• Reminders to practice
• Goals and rewards
• Prerecorded and customizable motivational messages
• Relaxation and mediation techniques
• A comprehensive user’s guide
• Tutorial videos
• Progress reports to share with therapists

For Children, there is the Live OCD Free Worry Wizard. It is a fun and empowering game with the goal of achieving victory over the “Worry Wizard.” It contains OCD specific music, graphics, and inspirational quotes from other children with OCD.

Live OCD Free is now available in the iTunes store for download on your iPhone, iPod Touch, and the iPad and has been developed by Dr. Kristen Mulcahy, Director of the Cognitive Behavioral Institute in Falmouth, Mass.

YouTube Preview Tutorials are also available:

• Live OCD Free Kids Tutorial.mov – YouTube  http://youtu.be/eLYa65CuBv8
  A tutorial with narration and music, outlining the basic functionality for the Kids version of the Live OCD Free App.
• Live OCD Free Adult Tutorial.mov – YouTube  http://youtu.be/5T63lNyjFb0
  A tutorial with narration and music, outlining the basic functionality for the Adult version of the Live OCD Free App.

*Promotional Code for Therapists: Interested in reviewing or previewing Live OCD Free? A limited number of applications are available for free download.

♥

In closing, this is the most exciting new option for OCD sufferers and therapists alike.  The peer reviews from our most renowned OCD experts internationally are universally impressed with this app!  

My daughter is involved with this application and its developer Dr. Kristen Mulcahy and will  be speaking for and representing the app at the International OCD Foundations Annual Meeting in Chicago in July! Is this not amazing? My daughter’s suffering has been so severe for so long and now she will be dedicating her treatment to this application on her iPhone, serving as its official spokesperson, conducting interviews and will be video blogging on the LiveOCDFree.com website for others to follow her lead!

 

Thank You to the Global OCD Community!

I’m just going to get it out there, here and now. Parenting a child with OCD is exhausting. I, actually, still feel guilty to even write such a statement about my own child. We all knew, as we became parents that it would, at times, be an effort-filled endeavor for many years to come. I know I, personally, accepted this fact readily and even excitedly. Was I simply being naive or was it that I had no idea what was to come?

I ask myself, how I can possibly complain about how indescribably difficult it is, every day, 365 days, each year caring for and sharing a home with an OCD adolescent. I’d say to myself, isn’t she the one who’s really suffering? Isn’t she the one who must complete these seemingly endless rituals and contend with those ever-present, illogical thoughts? Isn’t she the one who must take the medications and cope with the side effects? Don’t I have it easy compared to her? So, how can I reasonably profess my exhaustion at days end without feeling a sense of guilt?

As the years of raising my daughter, Julia, alone have passed and her illness has contorted into it’s ever so many presentations, I’m only just beginning to understand that it’s not only alright to be exhausted its imperative to recognize how I’m feeling. I must admit, always, over these past ~9 years, I thought I was to forever be my little families rock, never allowing myself any attention. I reasoned, any strength I take to do for myself depletes the little I have left within to contend with Julia and her little sisters daily care. But by solely focusing on their needs, Julia’s doctors, schools and day-to-day living, the precious moments, days, weeks, months and years still continue to pass… indifferent to my plight.

I have recently “come-out” with my story through blogging and joining support groups for caregivers and sufferers, alike. I have learned so much from others on both sides of the OCD fence through these faceless interactions.

By actively involving myself in dialogs with OCD sufferers, I’ve managed to see a more well rounded view of this disease from both the young and old. They have been patient enough with me to carefully explain how life is perceived through their personally OCD clouded eyes. This insight and willingness to help me understand now allows me to better communicate with Julia and better be inside her head while she’s trapped within this ever-sticky spider web disease.

Having only spoken of such matters with medical specialist and a few close friends over these years, I have just realized I was severely lacking one crucial element. The element of compassion and understanding to only be derived through a community who knows these struggles first hand! Through my interactions with parents from around the world coping with raising an OCD child, I’ve gleaned yet another perspective all together. To my surprise, other parents so freely spoke of their confusion, frustration and exhaustion. Meanwhile, the others listened, asked questions and comforted them. They gave them, as well as myself, “permission” to be real to real feelings about their personal struggles. It’s been through these experiences that I now realize all I’ve been missing.

For all of you out here facing the day to day’s with your children, I implore you to reach out. Reach out to people who “get it.” You will gain a new rejuvenation. A new way of releasing yourselves from the ties that bind. A new way to comfort and console yourselves. We all have so much on our proverbial plates, let the strength of the many provide the support to those of us who really need it, whether we recognize it or not. You may be surprised to realize that you can, conversely, help others by way of your experiences, as well. It’s like a balancing of nature. It’s too much to bear alone. Remembering, OCD is a families disease. A disease where all involved need care and compassion. This is how we can each awaken to every new day and lay our heads down each night with the empowering knowledge that we are not alone.

Mothers Letter To Suffering Daughter

My Dearest Julia,

We are going to do things differently. We are going to communicate. I am not going to allow you to give up on yourself. You are a courageous, smart, loving, wonderful person who has a big problem but a problem, believe it or not, which has solutions. You must be willing to, at least, try. I know you don’t feel courageous but courage is not the lack of fear but how you react and cope with the fear.

I know how impossibly difficult it is to discuss your OCD so I want to correspond with you via email until we are able to have a personal, face to face, dialogue. I am only trying to help you the best I know how. I have extensively researched, spoken to experts and corresponded with countess others suffering from OCD. From all this information, I’ve learned a lot and have come to some conclusions.

I realize you feel helpless against your OCD, the intrusive thoughts and need to act upon them. This I now, more fully understand. You must try to understand, too, that I don’t see things through the eyes of OCD so I upset you unintentionally.

I’d like to begin with what I have learned about the brain and OCD. It is not your fault you have OCD. You, and all OCD sufferers, brain chemistry and structures are different than people without OCD. Put in simple terms, 2 parts of the brain are bound together where there should be space in between. Your brain sends a signal and it gets stuck or locked and can’t be further processed. Then that thought gets amplified over and over in a non logical way. It gets stuck or locked. The way to make it better is to re-wire the connections in your brain. I can show you pictures of brain scans proving this fact.

Just so your clear, obsessions are thoughts and compulsions are the actions you take relating to the thought.

Remember when your sister, Carmela, could not speak because the speech part of her brain was damaged? The only way for her to be able to speak was to re-wire the connections around that part of her brain. The same is similar for you. You have to re-wire those connections so that the thoughts and actions will no longer be “locked.” I have learned there is more than one way accomplish this task. As you know, the most popular and most used is exposure therapy. But, there are also other ways which offer really good results.

One person describes OCD this way, “I compare OCD to a spider spinning a web at warp speed. The center of the web is the triggering event. Every intersection of the web is another possibility OCD creates in my mind, and it can grow infinitely. Feeding the spider by acting out the compulsions only makes her spin faster, until the web is so large, the spinning so out of control, the situation so infinite and sticky that all I can do is collapse in a sobbing heap of submission.  How do you stop when you get to that point? How do you know what’s real and what isn’t?  I want to stop being afraid. But I’ve always been afraid, though the crippling nature of contamination fear is new to me. This is not the first time OCD has prevented me from enjoying life, but it is the most severe. It is hell. I just want my life back more than anything in the world.”

She also says, “I f’—ing hate this disorder. It takes everything… I deeply resent the fact that I have to struggle painfully with shit that is completely normal for everyone else.”

That is all for now. I am going to email you often and I expect some response each time. I adore you and want only what is best for you. Sometimes, I may say things you don’t want to hear as you may to me. The point is to communicate. Since your not in any kind of therapy program, we must create our own. This is non negotiable. It will be difficult at times, and I will be here for you every step of the way.

I will listen and respect you at all times. There will be things I am going to require, things for which you may not agree but they will be required, none the less. If we work as a team it will be much better than if we don’t. You must remember, though, I am the mother and you are the daughter. I need you to trust me. And, things in our lives will improve.

Your loving mother,

Momma

Where Do You Go When There’s No Where To Go?

As a parent of a child with severe OCD, I can attest to the difficulties life presents. It’s a never ending cycle just trying to keep any semblance of normalcy within the family. Now, compound this dilemma with a child who’s many past therapist have essentially given up on any chance for her recovery leaves a parent feeling hopeless and desperate. The endless quest for someone to help her recover,even in the smallest of ways, has become a heart breaking endeavor. I’ve contacted the foremost experts in the field, all over the country, and received several referrals to local therapists and treatment programs. One after the next states, “we don’t accept insurance.” I contacted, again, the leading expert at Duke and he stated, “Am sorry to have to be the bearer of hard news—I wouldn’t organize services for kids that way if it was up to me—but just about everyone in the specialty clinical framework is out of network and no one accepts Medicaid.” How can it be true that the most ill children who are suffering so terrible are not accepted for treatment unless you can pay for it out-of-pocket? Everything you read says how critical early intervention is for children with OCD yet they are systematically eliminated from quality care even though they are covered under major insurance policies.

OCD Recovery Avoidance

My daughter has had OCD since before turning 4. She is now 12.5 years old and I’m just now learning about this thing called RA, recovery avoidance. But how can this possibly be? Surely, it’s not for my lack of seeking help from countless doctors, neurologists, psychiatrists and psychotherapists. I personally dedicate my life to her recovery. I researched on, what I thought to be, comprehensive internet searches over these many years. From the age of 4, I began taking her to “experts” in the field of childhood mental disorders. Time and time again, she and I were carelessly dismissed. I was told repeatedly, “she is fine, there is nothing wrong with her.” But how could this be? Her obsessions and compulsions were profound! She had to say and do things which were nonsensical, sometime harmful, endlessly!

What took 7 years, until she was 11, was for me to realize that my child was masking all symptoms and denying they even existed to all the specialists as they carried on their “private sessions.” Even from such a young age, she was afraid, afraid to admit these issues plaguing our lives.

When she turned 11, after much persistence, she was accepted into a “prestigious” OCD Cognitive Behavioral Exposure Therapy program at Duke University in Durham, North Carolina. Every week we would drive the hour there and the hour back for her to participate in the treatment process. Finally, for the first time, she began to speak relatively freely to the doctor about the types of symptoms she experienced on an ongoing basis. Although she was willing to tell some of what she was and had endured, she was still holding back the severity of her illness. This too was to be her first opportunity to be professionally evaluated and have the proper tests administered to determine her OCD severity scales. Even with her guarded answers, when the results were soon revealed she was, none the less, still categorized as having severe OCD.

Hooray I thought, I have finally broken through the barriers of providing the source of treatment for my suffering child. I thought, now we will bravely be able to take on this next, difficult task of exposure therapy. There is at last hope, hope for my precious child. Week after week went on. Back and forth we drove but the more agitated she became. Her MD/PhD therapist explained, “she is not ready for exposures, I must first take time with her to prepare her for the upcoming tasks. They then began “talk therapy” or so I thought. As I patiently awaited her to complete each weekly session it became more and more apparent that she was getting worse not better. As I expressed my concerns to the doctor he appeared more frustrated than accommodating. After months of “treatment” with no improvement in sight he called me into his tiny office in the little gray room with cinder block walls to state, “she doesn’t want to get better,” she just isn’t ready” and worst of all, “she isn’t suffering enough yet to make her want to seek treatment.” He went on to say, “I will remain her doctor and prescribe her medications but further treatment is futile.”

My heart broke at that very moment. What does he mean she’s not suffering enough! How dare he make such a comment. She spends every waking moment consumed by the thoughts and rituals. There is never a break, never a rest from this dreadful disease. I wanted to scream, please, oh please, do your job and make her better. We left that day from Duke no closer to recovery that we had been since she was 4. Where was I to go, what was I to do? Again rejected, as though none of them, not a one has a clue.

Now, I’ve discovered RA (recovery avoidance). I now understand, that the experts agree, a certain percentage of OCD sufferers experience recovery avoidance. They simply refuse to take the necessary steps required to release themselves. Its thought that sufferers are either too afraid to do the tasks necessary due to their mortal fears associated with their OCD. Whether their fears are based in reality or not, the fear they experience is their true fear and high walls can be built to create a falsified illusion of comfort and safety in a vain attempt to protect themselves. Or, the other rational for RA is simply called Incentive Deficits. This is where the sufferer does not have enough incentive to allow treatment. We all thrive on incentives to drive our actions throughout life. Wouldn’t the knowledge that treatment will work be incentive enough to release this debilitating illness from ones own mind? I’m so happy to finally be able to give it a name. So at least now, I have two possibilities from which to choose to explain her seemingly inexplicable behavior.

I have since come to understand, or quasi understand my wonderful yet tormented child’s predicament. I believe she allows such suffering and pain to continue because of both factors. She fears treatment because she believes no human will ever be able to help her. She fears exposures as she is convinced crossing her imaginary lines will surely kill her or someone she loves. Most notably, however, I believe the most profound reason for her RA is that she knows nothing other than OCD! Having suffered since she was four years old, this is the only life she knows. She has no memories from which to rely. Memories of better days, happy thoughts from a better life are so far from her scope of reality that she continues to spiral further down the OCD drain.

What is the answer, is there someone to blame? Why was I never told of RA? Why did the doctor just turn her away? I am in a quagmire from which I see no end. Can anyone out there chime in?