Moving Forward Toward Health, Hope and Healing:
By Delinda McCann
Early in December eight members of the FAS FRI board met to discuss the topic of caregiver stress and proposed healing techniques and avenues. We started with the current research on the topic of how stress affects the body at the cellular level and proceeded to an overview of the mind/body research. From our discussions we were able to define several directions for future action and advocacy.
First and foremost is the topic of caregiver stress. The stress of raising a child with FASD can be a killer. Jocie and I noted that our Post Traumatic Stress seems to be more related to events of living that everyone can face. The unique thing about FASD caregiver stress is that we often need to be vigilant 24/7 with responsibility for unpredictable, irrational children, on top of the normal life stresses. We can never fully sleep. Meals are disrupted. We live waiting on high alert for “the other shoe to drop.” In addition, with FASD, the stressful events we endure are often outrageously bizarre.
As life’s lessons go, we experienced a graphic real life demonstration of just how constant and strange the stress of living with someone with FASD really is. One mom needed to have her son with FASD with her at the retreat. She had recently faced some heavy duty legal issues and was about to take him to live with some of his birth family. While these big issues were obviously causing stress, it was his constant little FASD behaviors that were driving his mom to tears. Those of us who still had children at home did not seem to notice anything unusual going on with this young man. Those of us who have not lived with our kids for several years got a great reminder of how many children with FASD seek to be the center of attention all the time. The vigilance needed to keep this nearly adult child marginally socially appropriate and fully clothed was exhausting. It is this constant, grinding vigilance that prevents the body from resting and recouping, thus compromising its ability to cope with stress.
The goal of the retreat was to move beyond acknowledging the stress to looking at alternatives for managing it or treating it. We are a cynical lot, evidently. It took us mere moments to dismiss western medicine as a solution. Those of us who have faced life threatening health issues this year are well aware that relying on western medicine, particularly as practiced in the US, is not going to keep us alive and certainly not healthy. As we talked about what does help, our vision of seeking alternatives was validated.
It was at the point of looking at healing alternatives to help the caregivers return to health and wholeness that our discussions came full circle to the point where we all began when we made the commitment to raise a child with FASD. In looking at alternative or complimentary ways for us caregivers to return to health and wholeness, we explored the possibility that some of the techniques might be helpful for our disabled children as well. As Ann Waller was talking about Theta Healing I realized, that we were on to a plan that would help my daughter overcome some of the traumas in her life that we have been unable to address before because of the limits of her disabilities. (She has more than “just” FASD.)
It seems obvious when we stand back and talk about the issue of health, that we need to address the body mind and spirit as a whole in order for us to become more healthy. The reality of making a holistic approach happen in our lives is challenging in several ways. For me personally, I am constantly coming up against the barrier of my own childhood learning as I try to address the issue of controlling my hypertension. I have learned that my old thought patterns ie “If I just try harder, I can make this work.” and “good” values ie “Good girls don’t get angry.” lead directly to dangerously high blood pressure and stroke. Practicing different thought patterns such as knowing it is okay to give up or say no and throwing out much of what a “good girl” should or should not do, like stomping my foot when angry is lowering my blood pressure to that of a physically fit adolescent.
The FAS*FRI team plans to continue to explore this topic with the goals of keeping ourselves and others in the FASD community alive, improving our health and wholeness and finding new pathways to health and wholeness for our affected children.
Rip Van Winkle Revisited
Part 2: Waking Up from PTSD and Moving On
As you may remember from Part I, “my PTSD didn’t begin with cancer; it began the day I cried too much, when I was 21 years old.” After the doctor told me of the impending death of a second sibling, I blacked out and apparently started screaming and tearing up the waiting room. When I returned to consciousness awhile later and the nurses told me how I had lost control from the overwhelming grief, I was really embarrassed and made a strong commitment to myself. I gritted my teeth and thought, “I will never let that happen again.”
From that point on, whenever I was faced with deep grief, I gritted my teeth and stuffed my tears deep inside my heart and soul. It wasn’t that I thought I had done something “wrong” but I made a subliminal connection between my natural, innocent grief response of crying and losing control. When I was diagnosed with cancer, I didn’t cry one tear. I gritted my teeth and marched ahead for as long as I physically could. But a person can’t run from grief forever. My subliminal associations had unwittingly entrapped me and set me up for triggering PTSD last summer when I could no longer deny or escape the trauma in my life. Because I had subliminally blocked myself from a typical expression of grief, I had developed a kind of detached grieving response. It felt almost like an out of body experience. Tears flooded my eyes and flowed uncontrollably down my face–day after day, week after week, month after month. I was still so detached, I didn’t feel anything; I just “watched” the tears flow. At the time I didn’t realize what was happening, but I was headed toward a crisis.
Then, like Rip Van Winkle, I came to a point in my life where I just physically collapsed. My medical doctors, friends and family decided that it was time for me to look back and figure things out. I am now able to see how complex the subject of PTSD really is. But, for me, recovery from PTSD came down to taking a couple of major steps. I had surrounded myself with really good people and my first step to recovery was taken by following their advice–getting a good medical evaluation. After telling me that there was no new illness or physical condition, my doctors validated me by telling me to remember that I am a good, kind, loveable person and that I do the best I know how in difficult and traumatic situations.
It wasn’t that I needed to find out what I’d done wrong, so I could be fixed. Recovery from PTSD meant that I needed to be surrounded by people who were healthy enough to offer and give unconditional love and support while I was physically incapacitated and just let myself grieve about nothing in particular, and yet anything at all. Sometimes unconditional love means giving yourself permission to just let the tears flow and flow. At other times, unconditional love means being together with other people who genuinely know what PTSD means and validating each other. In my case, I didn’t really start to recover from PTSD and find joy in my life again until our FAS*FRI board met at Vicky McKinney’s house in December in order to gather the Collective Family Experience on caregiver PTSD.
It was at her house, surrounded by supportive friends, that I was able to take my second major step in recovery from PTSD. By listening to those who loved me and who let me talk, I was able to understand once again the difference between depression and grief. Grief is a process and in the 1960’s we just didn’t understand that. Besides, even if someone had told me that, I probably would have decided that I was just too busy to be interrupted by a lengthy grief cycle. The truth is that grief isn’t something you can hurry or shortcut. In our culture today, we are considered successful if we are good at multi-tasking. I am very good at that, but I couldn’t really heal from cancer or anything else (much less the trauma of FASD) until I set aside time with my Lord, my friends and my family and allowed grief to run its natural course to full completion. And now like Rip Van Winkle, I am awake, it’s spring and it feels great to be out in the sunshine again.
During the next few weeks other mothers who were at the retreat will share some of their experiences with PTSD too. We have set aside this little Blog as a safe place for all of us to share with each other.
Have you had personal experience with caregiver PTSD? What has helped you?