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by Susan Abod
February 20, 2002
About the author: Susan Abod is a musician and documentary filmmaker who studied music composition at DePaul University’s Music School. After being diagnosed with Chronic Fatigue Immune Dysfunction Syndrome and Multiple Chemical Sensitivities in 1986, Susan suddenly had to put her dream of writing and performing her music on hold.
After a failed attempt to keep up with a graduate school counseling program due to her health, Susan was inspired to write and produce a documentary about her debilitating condition, called “Funny, You Don’t Look Sick: Autobiography of an Illness”. The documentary screened at the Museum of Fine Arts Boston in November 1995, and has since been distributed to thousands of individuals, schools and libraries throughout the country. Fifteen years after her initial diagnosis, Susan has produced her first music CD, “In the Moment.” To learn more about Susan, her music, and her documentaries, please visit www.susanabod.com.
In 1986, I was diagnosed with Chronic Fatigue Immune Dysfunction Syndrome - and my whole life as I knew it changed. Before I got sick, I was singing professionally in clubs and concerts and teaching music.
When my doctor first told me over the phone that I had this thing, this virus, I was elated! I mean it was weird, but I was so relieved; now I actually had something confirmed, a reason why I felt so wiped out for all those months, wondering if I was making it all up. So at least I wasn't crazy.
Soon I began to notice I was becoming more sensitive to smell. Every time I went to the movies or to public events, it seemed that someone who had a lot of perfume or after-shave on would always wind up sitting right next to me. A few minutes later, I’d get a throbbing headache and a sore throat that was searing dry and burning. My legs would start to feel heavy. It was like they were being held down with weights. I wondered if I’d be able to drag myself home. Then I started to notice that every time I used my gas oven I lost my ability to concentrate. I'd find myself standing in the middle of my kitchen, trying to think of what to do or say next.
I didn't put any of this together until a friend came over and told me my gas stove made her sick. She said she was chemically sensitive. Her symptoms sounded so much like mine that I went to her doctor - a clinical ecologist.
Test results showed I had abnormal levels of toxic industrial organic chemicals: things like Trichloroethylene, Tetrachloroethylene, Xylenes and Styrenes. Somehow these chemicals got inside me; how, I don’t know. And they were affecting my immune system.
That’s when I was told I had something called Multiple Chemical Sensitivities or MCS. I soon discovered it’s an illness that has many names, including Environmental Illness (EI), Toxic Immune Syndrome, Atopic Allergic Rhinitis, Total Allergy Syndrome, and 20th Century Disease - but it has no cure. And at that moment, like so many others with the same diagnosis, my lifestyle was to completely change.
Thus began my long journey. Since I couldn't consistently keep up just with part-time work and do the basics of taking care of myself, i.e., grocery shopping, laundry, etc., focusing on my healing became my top priority. One of the first actions I took was going to a Massachusetts CFIDS meeting and I joined a support group. Next I signed up with the Beth Israel Mind Body Clinic to learn how to meditate and deal with the chronic nature of an illness that has no cure. I went on welfare and food stamps and Medicaid while I endured the arduous process of qualifying for disability. I think the third appeal was the charmer. All in all, it took over a year.
By talking to others who have MCS, I followed their lead about what services are available to people with disabilities like mine. I needed to learn about, find and create safe non-toxic housing. I applied for and got a section 8 certificate and started searching, searching, searching. It took over 2 years to find an accessible apartment and a landlord that would take the certificate. For over 3 years I lived just dealing with basic survival needs: shelter, food, medical help, and clothes.
At the same time, I started trying things to help me try to get better or at least feel better. Some of the things I tried: acupuncture, lots of nutritional supplements, chiropractic and cranial sacral work (for the Fibromyalgia), polarity, and resting, resting, resting. I also tried ‘pushing through’ when I was tired, Kinesiology, Swedish bitters, several courses of a low dose of antidepressants for sleep, antigen shots, visualizations, affirmations…I’m sure I’m leaving something out. These therapies might have helped initially, but after a while, it all stopped being effective.
What I’ve learned from talking to so many others who have CFIDS, MCS and/or Fibromyalgia, is that each body seems to respond to different things. I know someone who after many years of being really, really sick started taking Florineff, and now she’s working full time and wearing clothes off the rack - and nail polish! She says she still has to watch her energy, but what a turnaround. However, Florineff did nothing for me.
The treatments I tried that I believe have contributed to my increasing energy and health over the years include: eating organic whole foods, a diet of no sugar, no caffeine, bottled water, very little raw vegetables, and fruit which is mostly cooked.
Homeopathy continues to contribute here and there. I did a course of EPD (Enzyme Potentiated Desensitization) for six years, which I feel greatly increased my resistance to reacting to chemicals and foods. Physical therapy and exercise continues to help increase my strength. I’ve recently worked with an endocrinologist taking very low doses of t-3 and t-4. This has increased my energy and mental clarity. I have been involved in ongoing emotional healing work that involves clearing away the past’s effect on my present thinking. Creating and maintaining intimate friendships is so important to my well being. I can’t say enough about the benefits of talking daily to friends and support group members. I email people with MCS and CFIDS from all over the country, and this helps cut through that feeling of isolation. And I continue to look and pray for a partner.
I have a daily spiritual and meditation practice. Cultivating mindfulness continues to be a firm foundation for me and puts things in perspective. When I have been really flat out sick and can do nothing, meditation has increased my energy level and allowed for compassion and acceptance with things as they are - thus creating some peace within me and a space for healing. Here are some quotes about healing that have helped me, and might inspire others.
“You are not responsible for your illness; you’re responsible to your illness…. When we see that we are responsible to our illness, then when pain arises we can send mercy, we can send kindness. Our experience is that when you touch that which is in pain with mercy and awareness, there’s healing. Where there’s awareness, there’s healing.” - Stephen Levine
“If we can be openly present in this moment, even the thought of healing disappears, because healing is a human idea. There is only a continuous process of being in a wholesome relationship to the conditions and situations in our lives.” - From A Zen Story, What is Healing? by Barbara Rhodes
Yes, my energy has increased greatly since 1986. I am able to do more things, more often, but am I cured? Definitely not. My limits are still quite profound and daunting. I’m still unable to work because of the inconsistency of my energy and MCS accessibility issues. But have I been healing? Definitely yes.
One of the greatest contributions toward my healing has been working on creative projects that allow me to express my experience artistically. This work brings me joy and is so life-affirming for me. And joy, whenever and wherever we can find it, is essential.
During a time when I was very sick, I saw a documentary, "The Broadcast Tapes of Dr. Peter" (HBO, July, 1993) that inspired me, and I got a very strong desire to make a video about my experience with CFIDS and MCS. I knew nothing about the medium, but I got out of bed and wrote a synopsis in a half-hour. Three years later, with the help of a few very dedicated volunteers and technical crew, "Funny, You Don't Look Sick: An Autobiography of an Illness" was showing at the Museum of Fine Arts in front of 200 people!
Making this video helped to bring me out of my isolation. Seeing how this video has helped lots of folks and their families has been amazing. The completion of "Funny, You Don't Look Sick" far exceeded my expectations. (For more information about the video go to www.susanabod.com). The video has been screened internationally, both in public forums and via cable television networks. It was distributed professionally by the Cinema Guild of New York to libraries and colleges and is available to individuals through my website.
During the final editing of "Funny, You Don't Look Sick", I realized how much we needed another video to expose the proliferation of MCS and the frightening variety of different causes for its onset. I especially wanted to explore the vital issue of safe housing as treatment and prevention for MCS. My own battle with housing has been, and continues to be, very difficult.
Through the MCS grapevine, I heard many awful stories of people forced to live out in cars or tents, trying to avoid chemical exposures. I also heard about architects, builders and others, ill with MCS, creating safe homes and getting better. I received a grant and in 1997, with a wonderful camerawoman at my side – we went to the Southwest in my van and shot the footage for the second video. Right now as I write this article, there is a dedicated young editor very slowly working on finishing "Homesick.” Hopefully it will be completed by the end of this year! (More information about this project can be found on my website.)
Then last year I fulfilled a life long dream. I made a recording of my music. It was one of the most wonderful experiences I’ve had. The CD is a compilation of 16 songs that I have written and gathered over the years. Many of these songs have helped me through the rough times of being ill. This also took a long time to complete but it was released last May. (To hear samples of songs go to www.susanabod.com) Singing transforms me. When I’m feeling really sick, if I remember to sing - no matter what it is, I feel a bit better in that moment. Since September I’ve been trying to sing once a month or so at house concerts and yoga centers. Wow. It’s hard when I am sick the day of a performance. But if I am feeling well, it’s great. I see that in either situation my music brings joy and comfort to others and that’s the best medicine for me!
After over 15 years living with these illnesses, you’d think I’d have it down by now. But sometimes there will be three weeks or more of feeling so good, I begin to think I’m really better. And then I crash. It’s still so hard to adjust to the not knowing how you are going to feel from one day to the next and not to totally get discouraged and feel hopeless looking into the future.
I do. In fact, for the past few weeks I have been struggling with feeling not very accepting of my situation due to a recent lapse into exhaustion and increased symptoms. Like many of us, I suspect, I want to be completely well, off disability, partnered and working! Can I accept my life on life’s terms? Can I be happy if I don’t get these things? I don’t know. But what I do know, for today anyway, for this moment, I am at least willing to accept that I’m not feeling so accepting today—and this helps me.
The lyrics to the title song of my CD reflects more of this idea:
In the Moment
Well here I am crossing that line/
Taking a step but taking my time/
I just keep moving forward/
Keep moving toward/
The love that's waiting just beyond my fear/
Saying' "In the moment I'm fine"/
So for the moment
Here I am wondering how/
I will ever get through the worry and doubt/
Do I have the persistence?/
To meet the resistance/
I want to run away/
But then I hear this voice say/
What's in a moment will pass away/
So, for the moment, I'll stay/
In the moment/
Where I can find the strength and shelter that I seek/
And just for a moment/
I can believe that I'll be given what I need/
So here I am I’m crossing that line/
Taking a step, one at a time/
I’ll keep moving forward/
Keep moving toward/
The impossible/
And then just let it all proceed/
Cause in the moment I’m fine,/
In the moment I can be/
In the moment, I’m fine/
In the moment there's peace/
In the moment I’m fine/
In the moment, sweet release/
In the moment, In the moment/
In the moment I can see/
That in the moment, I can let all it be.
(© 2001 Susan Abod)
And so today, in this moment, I find myself writing this article. What a gift it has been for me. It’s given me perspective. It has allowed me to look back at what I have accomplished over the years. It has allowed me to reconnect with compassion for myself and for all of us coping with these illnesses.
May you be happy
May your heart be ever open
May you be at peace.
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