Monthly Archives: February 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.

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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.


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