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

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About LISA DOUGLAS

Foremost, I am an OCD awareness, treatment and long-term recovery: advocate, spokesperson, consultant, supporter, and educator. I am the mother and sole provider of care for an amazingly smart, witty, charismatic, 13 year old daughter, Alexandra, who was severely debilitated by OCD. The apex of Alexandra’s journey to simply be like ‘normal’ people is marked by her recent, astonishing ascent from the subterranean bowels of OCD Hell she has inhabited for as long as she can remember, to becoming freed to, once again, walk alongside and among the “land of the living.” Over these past nine years and all the realizations I’ve made regarding the mental health system, its profession and providers, society’s stigmas, discrimination, accusations, insurance debacles and all else involved, I’ve been making belief, someone, someday will help my progressively declining child who’s Y-BOCS consistently remained between 34 and 40 for the past 6 whole years! Until this past April, she and I have been on an endless quest for proper treatment which would help to alleviate and, ultimately, release her from the incomprehensibly horrific, all-consuming, self-harming, isolated purgatory from which she was ever-increasingly, perpetually trapped by her obsessions and rituals. Earlier this year, our seemingly last hope for help was to be an extended stay at Rogers Memorial but after months of fighting with her 2 insurance companies over denying coverage for admittance, I was at my wits end, again! Having immersed myself into the global OCD community for many years seeking help, advice, guidance, etc., I came across a post seeking beta study participants using an app for ERP. Immediately, I applied for my daughter. The director/doctor was very hesitant as Alex’s OCD was so extreme. However, with a lot of persuasion, a remarkably wise and kind doctor, as well as, an enormous ‘leap of faith,’ we began using the app from LiveOCDFree. She has been diligently working with the Live OCD Free app for the past 3 months. During this short time, with much hard work and determination, she has achieved remarkable progress against her, previously omnipresent, OCD symptoms! Her OCD had forced her into seclusion, isolation, and painful 4+ hour ritualistic decontamination showers and had even left her unable to touch or breathe the air of those she loves. Remarkably, Alexandra can now walk anywhere and touch almost everything freely. She can hug and spend time with loved-ones and friends without decontaminating. Ali’s showers are now only 25-minutes and do not involve any painful rituals. She continues to work to conquer her remaining OCD issues and anticipates, in time, a full recovery from the OCD which has plagued her since the age of four. Alexandra, and I, want nothing more than to lead a revolution against this insidious, debilitating monster we call OCD! To help others see how much hope there is with proper treatment, she and I are documenting her OCD recovery process and history through Facebook.com/ LiveOCDFree, Twitter: LiveOCDFree, YouTube.com/LiveOCDFree, OCDKids.wordpress.com and LiveOCDFree.com. Please, join and /or follow her journey so you can be aware of OCD, too. View all posts by LISA DOUGLAS

4 responses to “Mothers Letter To Suffering Daughter

  • ocdtalk

    A wonderful idea……..I hope this is the beginning of increased communication and recovery…….for you both.

  • douglaslisa

    Thank you. I’m glad you think it’s a good idea. It’s something I’ve not tried before. I’m hoping it relieves some of her anxiety by reading my messages and by not being personally approached. I’m reading “Brain Lock.” It is what I will use as a blueprint to, slowly, walk her through the necessary steps towards some level of recovery. Initially, my first goal is to get her back on her medications. Without them, she is simply in a continuous downward spiral and any attempts towards recovery would be futile.

  • Huda

    This left me in tears because I know how OCD can disassemble everything around you. Such an awesome approach of communication, when a mother understands, the world doesn’t matter then 🙂

    • douglaslisa

      Dear Huda, I really appreciate your comment on my first letter to Julia. The jury is still out as to its effectiveness, because she can no longer use the computer without thoroughly dousing it with Lysol. She has reached, yet, another degree of fearing my contamination level thereby disallowing her to touch anything I’ve touched without resorting to decontamination procedures. So, using our home computer and writing letters are no longer an option. I’m having a computer repaired which will stay in her “sterile” bedroom. Allowing a personal computer in her room became another “enabling” question. Since access to a computer affects her home and school life and since I already had one in disrepair, I decided to embrace the idea and focus on larger issues.
      OCD is such a vile, insidious disease. You are absolutely right, it is utterly destructive and very often brings me to tears, as well.

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