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

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.