It’s Shabbat.  In the past, that meant going to the synagogue and participating in all kinds of Jewish rituals and songs.  But because of a combination of sexism in the Sephardic and Mizrahi communities and some combination of racism and persistence attachment to ignorance in the Ashkenazi community, Shabbat has turned into a day of just kicking back and relaxing, on my own or with close friends.

One of my DBAs

Factoring chronic pain into my choices, I usually spend Shabbat lolling about the house or hanging out with my best friend and my DBAs (Daughters by Association – ie, her kids). But today I was wondering: If I did not have chronic pain, what else might I do today?

• Drive to the mountains and go for a hike.
• Bike about 20 miles.
• Go running on the beach.

Okay so I’ve had this crazy spastic random nerve pain all over my body, in addition to the usual pain suspects.  But I don’t want it to limit me more than absolutely necessary.  So how can I modify what I would do with no pain, so that I can do it with my pain levels the way they are today?

Maybe I’ll take my bike to the shop (if I can lift it into the car without exacerbating my pain), to get my tire fixed, then bike an easy 3 mile round-trip distance and see how it goes.  Or maybe I’ll go to the nature reserve that is a 15 minute drive from my house, then walk a one-mile loop.  I don’t think I’ll brave walking on the sand just yet, because of the intense growing pain I’ve had for the past month or so (which left me under chronic pain house arrest).

Either way, I’ll start off with a nutritious meal and a dance session.  Then I’ll put myself out there and do whatever I can.  Because sometimes, if not most of the time, progress happens in baby steps.

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I’ve got that the strange kind of contradictory life that seems fairly common for highly-functioning disabled people:

On the one hand, I have written for top magazines and newspapers globally; I have given lectures at some of the most prestigious institutions in the world; I have published two books that are taught throughout the Ivy League and at universities across the country; and I have been a featured expert in numerous film, television, radio, and print media outlets.

On the other hand, I am always either just breaking even financially, living in debt, or on the verge of homelessness, for reasons directly related to my condition of chronic pain: 

Over the past decade plus, I have spent over a quarter of a million dollars (ie, enough to buy a pretty house in a nice neighborhood) on my explicit health care expenses. A significant chunk of this sum was for my useless, yet crazy expensive, health insurance.  The bulk of it was for the health care that actually worked and therefore was not covered by aforementioned useless, yet crazy expensive, health insurance.

Then we’ve got all the additional expenses that come with naturally managing a chronic health condition, including but way not limited to the following:

1. hiring help for things I always used to be able to do on my own (everything from transcribing an interview to scrubbing a bathtub to carrying groceries);
2. purchasing computer hardware and software, enabling me to work despite hand pain;
3. paying full fare for travel on business trips, instead of getting cheap deals requiring that I sit in a middle seat (hideous pain for hours straight) or fly at a certain time (losing the ticket if my body isn’t cooperating at that moment).
4. buying organic, pre-washed, pre-cut, pre-packaged produce (getting proper nutrition while avoiding pain and fatigue that can accompany healthy cooking);
5. paying for a cab or rental car instead of taking public transportation

These things add up. In a big, fat, tens-of-thousands-of-dollars-difference-between-living-with-a-chronic-health-condition-and-not kind of way.

And let us not forget the hidden costs, such as running my own business, instead of working for someone else — so that I can set my own hours, work from home, and therefore function despite my disability. Taxes for the self-employed are not a pretty thing, never mind the additional cost of renting an apartment with extra room for an office.

And how many gigs have I been unable to take, as a result of being bedridden from debilitating pain for days, weeks, or months at a time? What’s more, how many networking opportunities have I missed, because my body could not deal with traveling, or because – and here we have a vicious cycle – I could not afford to attend a conference where I may have made connections leading to new work opportunities?

I am now in the throes of putting my engines behind my mind-body media and education company, Dancing with Pain®.  The irony is that the chronic pain struggles this company is designed to address are playing themselves out in the development of the company: For starters, I am launching it with no capital, for aforementioned chronic-pain-related reasons. 

Second, and perhaps more significantly, I’m having one hell of a time staying on top of everything while also taking care of my body.  Last week, I worked 12- to 14-hour days, leaving little or no time to dance or sleep.  Of course, my pain levels jacked up as a result, which is completely ridiculous, considering the whole point of the company.

But what else can I do?  Our system is set up in such a way that those of us who are living with a chronic health condition, yet are somehow managing to stay just above the water, fall through the cracks.  We are not destitute enough to qualify for social services (seriously – to get disability health insurance, you pretty much have to be living on the street or in a drug-infested urban hovel), yet we are not perceived as being financially solid enough to secure key business investments and bank loans easily available to people with capital.

Someone recently suggested that I waitress to make ends meet, during the startup phase of my company. Waitress? With wrist pain, ankle pain, knee pain, and back pain? Sure, I keep my pain levels way down and am highly functional on a day-to-day basis, but that’s specifically because of all the macro- and micro-measures I have taken to live a chronic-pain-and-disability-friendly lifestyle. Pull out any one of the gagillion factors I have carefully balanced, and the house of cards comes tumbling down.

Living with chronic pain, I do not have the safety net I once had – temping as an administrative assistant, waitressing, bartending, working as a clerk in a record shop… All of those options are closed to me because of my condition. In other words, it’s all or nothing. And even with all the accomplishments I’ve got under my belt, and all of the power and privilege that come with them, that is one hell of a scary proposition.

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Many people, doctors and patients alike, are reluctant to try treatments that have not been proven by conventional scientific measures.  In this interview, Andrew Weil, MD discusses effective complementary and alternative medicine (CAM) treatments and shares his thoughts on the relationship between science and CAM.

Loolwa Khazzoom: What are some common ailments that you have seen treated effectively through complementary and alternative medicine (CAM)?

Andrew Weil, M.D.: First of all, in treating autoimmune and inflammatory disorders, I have seen great success using an anti-inflammatory diet that I have developed. I also recommend the use of herbal medication (especially things like ginger and turmeric), mind-body methods (everything from guided imagery to stress reduction), lifestyle counseling, different forms of exercise, and sometimes the use of Chinese medicine.

For depression, I think there are a huge range of approaches that are very effective, from aerobic exercise to high-dose fish oil, and various dietary supplements. I find the anxiety-reducing breathing exercise that I teach to be more effective than the standard pharmaceutical drugs. 

LK:  How is it that these methods work? Why is it that they work? People generally expect to have to do something high-tech to respond to something that’s gone awry in our bodies. 

AW: I think this is the key question of what’s wrong with American health care. It has us all dependent on high-tech solutions that are expensive. I think these low-tech methods work because the body has an innate healing capacity, and there are many ways of accessing it. I think that people, in this culture especially, have little confidence in their body’s ability to restore health.

Many of these methods have very sensible mechanisms behind them. High-dose fish oil affects brain chemistry; there’s a lot of research on that. With breathing exercises for anxiety, there is a logical mechanism: Breath affects the involuntary nervous system.

But there is very little research on the impact of breath work, because it is something that is just not taken seriously by the research community, probably because it is so simple. I have worked for years to try and get studies going on it. There is a little bit starting now, but the lack of interest in this kind of stuff is remarkable.

LK: What do you tell people who insist on having hard scientific data?

AW: There is a lot of science out there. It is just often published in places that most doctors don’t look. I think the first thing is to see what evidence there is. Second, we should get into the habit of using a sliding scale of evidence, which works like this:

The greater the potential of a treatment to cause harm, the stricter the standards of evidence it should be held to for efficacy. In the case of something like a breathing technique, the potential for harm is so low that I feel quite comfortable recommending it, in the absence of hard scientific evidence of its efficacy. I know it works, because I use it myself, and I use it widely on patients. It’s not going to hurt people.

One of my colleagues is a Norwegian doctor, heading the Norwegian government committee on CAM. He’s a research methodologist, and he has come to believe that evidence-based medicine is a conspiracy of the pharmaceutical companies, because all of the evidence-based recommendations come down to drug treatment. They don’t look at other things. 

LK: It also seems to me that the system that has been established for testing effectiveness – the guidelines, if you will – are not applicable to a number of things in CAM. 

AW: Absolutely. It’s a big problem.  It’s easy to blame the pharmaceutical companies for all this, but really they’re just capitalizing on a mindset that has taken hold of both doctors and patients in our culture — that the only legitimate way to treat illness is drugs.  

LK: I find that I keep encountering, not just in regards to complementary and alternative medicine, but in other things as well, a disbelief that simple things can actually work.

AW: This is the infatuation with technology, which developed in the past 100 years. This is exactly what I run into with the breath work: It is one of the most powerful interventions that I have ever discovered, for a wide range of conditions — high blood pressure, heart arrhythmias, chronic digestive problems, anxiety, insomnia. The fact that you can’t get people to do studies on it is remarkable, and it really is because it’s “too simple.” 

There is a prejudice. People wonder how it possibly could work, being that it doesn’t involve a drug, and it doesn’t involve a device. That, to me, is the big problem in this area. I think that the answer is education about the body’s remarkable capacity for self-maintenance and healing and about the value of knowing and using these low-tech solutions before going to complex, expensive ones.

If low-tech methods don’t work, then sure, you go to stronger methods. Or if you’re dealing with an emergency, then you use more drastic methods.  But for the vast majority of conditions out there, there are inexpensive, low-tech, simple methods that people ought to know about. 

LK: With an absence of hardcore scientific evidence proving that some treatments work, how can a person who is not that educated in complementary and alternative medicine distinguish between treatments that really work and stuff that is a gimmick?

AW: This is the whole point of the integrated medicine that I teach. We have now graduated over 500 physicians from intensive training. The training enables them to make those distinctions and teach their patients to do the same.

Ideally, you find a trained health-care professional, preferably a physician or a nurse practitioner who has this kind of training, who can advise you. Our website gives a directory of all our graduates. 

If pharmacists were trained in the use of vitamins and minerals, herbs and other dietary supplements, they would be the best people to advise both patients and doctors about the uses of CAM and its interactions with pharmaceutical drugs. It’s really a matter of getting trained people out there.  

LK: What are three basic steps people should take in trying out natural, preventative medicine?

AW: Learn the basics of good nutrition and how diet affects health. The simplest rule is to try and get rid of refined products and manufactured foods. They may be what is causing all the trouble.

It’s also a good idea to have a home medicine chest with simple remedies. There are about half a dozen herbal treatments that are very useful — like Valerian for sleep and peppermint for stomach upsets.

Lastly, have some kind of relaxation technique to practice. My favorite is simple breathing methods, because they are so time efficient.

 Andrew Weil, M.D., is an internationally recognized expert on integrative medicine, medicinal herbs and mind-body interactions. He is the founder of Weil Lifestyle, LLC, a resource for integrative medicine education, information, products, and services. He also established the Weil Foundation, an organization dedicated improving the training of health care professionals; educating the public about health, healing, and nutrition; reforming public policies governing health care; and researching the application of integrative medicine.

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I just had an easy-breezy, anti-inflammatory, nutritious, delicious meal.  The key is the sauce and dressing — most significantly in this case, Trader Joe’s Satay peanut sauce.  Here is what I ate:

One Pot Entrée

• 1/2 can garbanzo beans
• 1/3 firm tofu block
• Two handfuls of Trader Joe’s prewashed, prepackaged cooking greens
• 1/4 jar peanut sauce, with another 1/4 jar water added

Dump everything into a pot, put on medium heat, stir, and take it off the stove when it’s boiling.

Yam

Yams and sweet potatoes have the comfort food feel of baked potatoes, with the extra nutritional value of beta-carotene.  Because all potatoes take forever to cook, I stick a bunch in the oven at once, bake them on 400 for an hour, then just leave them there or refrigerate them.  Over the next couple of days, I use them as my starch food item during meals.  Not only nutritious, but colorful and delicious!

Side Salad

• A big handful of mixed baby greens, from Trader Joe’s pre-washed, pre-packaged salad selection
• Homemade dressing from flax oil, balsamic vinegar, salt, and pepper (mostly oil, with a little vinegar, salt, and pepper to taste)

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At the end of my dance session today, the word “conduit” came to mind, to express something that I have wanted to articulate about the Dancing with Pain® approach to dance. As in, my body is a conduit for music.

The music shapes my body.  The music penetrates and permeates me, vibrates through my bones, swirls around my nerves, flows through my bloodstream.  It moves me.

In a way, that’s why the dance is safe: I am not trying to impose any preconceived movements onto it.  The music dances me, as my body dances the music.  The relationship is dynamic and alive.

The music informs me.  The music guides me.  The music becomes me, and I become the music, in a state of transcendence.

Today, I started off sitting in a meditative, cross- legged position, for the very soft, a cappella beginning of my session — as I absorbed the music and became aware of and embodied my internal landscape.  I then lay down for the still-soft, ethereal song that followed, and I continued absorbing the music, embodying it.

I remained lying down, as the music gradually increased intensity.  How long will I just lie here, I wondered.  A part of me wanted to actively move — i.e., to initiate physical movements in rhythm to the music. But the deeper part of me, the wiser part of me, knew to continue lying down and absorbing the music, to let the music inform my movement.

As one song transitioned into another, I noticed my body softening, relaxing, surrendering into the carpeted floor. And then, like magic, my body started to move — first my toes, then my fingers, then my torso, legs, and head.

It was therapy.  It was medicine.  It was exactly what I needed.  The relationship between the music and my body knew exactly where to guide me in my movement journey today.

When I release expectations and goals; when I surrender to the magic and mystery of each unique journey; when I experience my body with a sense of discovery and wonder, knowing that each day I am different, then the transformation happens.

Sometimes it is tiny.  Sometimes the changes are almost imperceptible.  Sometimes the changes are obvious, with gross muscular movements.

By the end of my session, I was jumping, leaping to the music.  It was so easy, natural, organic, coming from deep within — that place where G-d and Spirit and joy and possibility and spontaneity mingle. It was delicious.

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