Month: April 2013

Affording care: the politics of wellness

On By Edissa Nicolás-HuntsmanIn Emotional Wellness, Physical WellnessLeave a comment

I’ve been thinking about what it takes for the average person to get care. I don’t even think this is about good care, unfortunately, just plain care. The answer, I find, is disheartening. Women and men avoid care until they are in crisis. The kind of the services one accesses depends on the resources at one’s disposal. Once at the hospital, the quality care varies drastically according to the gender, socio-economic class, and skin color of the patient. In addition, the historical trauma, discrimination, physical and emotional states of the patient can further transform the experience. Never, for example, take pain medicine before you go to the doctor. Being in any nearly relaxed state is not conducive to optimal care. Better yet, be a white male of about 28. I’m told you will receive the red-carpet treatment. I don’t mean to be glib, but it seems that too many of us are going without the basics. There are too many factors interfering with our wellness.

Chronic conditions such as pain and disability tax the body, mind and spirit of people who must endure them. I just met a very nice 89-year-old woman and her daughter at Kaiser. I overheard the two women discussing shingles in the waiting room. I was adamant that she get the vaccine, to which the daughter replied that her mother has had shingles for six years. As I looked into the eyes of the elderly woman, I had so much compassion. I apologized profusely. There was no question in my mind that she was suffering in all her regal kindness. All I could offer was a recommendation that she try Chinese herbs, which she seemed eager to try. While I told her that it worked for me, I wonder what she would think about an additional weekly out-of-pocket expense. Later that day, I found myself in casual conversation saying that I only had shingles for six weeks. It’s all about perception.

I’m convinced that poor people are made to wait needlessly. It’s: “Line up for this; line up for that.” Wait three months for surgery you needed last year. Like my mother, she is 70, has a benign tumor in her nose, and terrible health insurance. Instead of scheduling the procedure, her doctors have prescribed her another batch of antibiotics. This is not only bad healthcare, it’s also silly. First, the antibiotics are not going to shrink the tumor; it’s beyond that as were the first two regimens demonstrated, which is actually my second point. She’s already had two doses of ineffective antibiotics before the diagnosis, neither of which helped her condition. And they wonder where the superbugs are coming from! Hello? Third and possibly last point: when they perform the surgery, (why do they call it a performance, anyway? This is a juicy question that I’ll have to explore. I suspect the gallery-style operating theatres of 19th century Europe.) they will have to prescribe more antibiotics. Meanwhile, poor mom is suffering and lowering her resistance while this tumor is already complicating her life and interfering with her ability to work. Did I mention she works in a school with children? Why she’s working in a school kitchen at seventy-years-old is easy: she’s a poor immigrant woman. They work until they drop, and sadly, they’re not the only ones. If you’re not in the top 5 percent, keep your working papers handy.

The shadow side of this is that my mother’s prescriptions are so expensive that she rations important diabetes medication. Two other women I know make medical choices based on economics instead of the quality of care, and not by choice. Both struggle to afford expense medications, just as my mother does. Another friend’s prescriptions are in the several-hundred-dollars-per-month category. Rather than getting the best medicine for her condition, she gets the more affordable option. Who are these companies planning to sell these pills to, anyway? It’s legalized extortion.

There are simply too many barriers to wellness in our society. How about sadistic, misogynistic techniques like mammography? They’re enough to make any sane woman crazy. I’m convinced that mammography increases the risk of cancer after having only one exam in which my tiny breasts were clamped into a metal device, multiple times on each side, each at odd angles, causing both bruising and swelling; a cold clamp is tightened on the breast as sweat and tears flow down the face and neck; this is followed by several doses of live radiation. Women, this is no joke. I started crying about 20 minutes into it, and I didn’t stop for at least an hour afterward. How does anyone survive that test? Who dreamt up such a nightmare? Oh, I totally forgot to mention that this happens while the victim stands in front of the cold steel table, shirtless. Women line up and wait hours to have this done. I kid you not. It’s like a medieval torture device—that women pay for and undergo willingly. So let’s evaluate the evidence:

  • Torn and bruised tissue
  • Broken blood vessels
  • Physical and emotional stress
  • Physical and emotional trauma
  • Radiation
  • Yearly repetition of all of the above

Do the math. If I were a cell, I might mutate under those conditions. Ridiculous! Maybe mammography saves lives, but I can’t help wondering at what cost. I remain unconvinced. So do several other women, who I love and trust.

At present I persist in seeing the acupuncture doctor. Apart from wanting to avoid neuralgia, I’ve started to take more careful looks at the gorgeous babies trapped beneath the glass on Dr. Kang’s desk. Apparently, he’s quite famous as a fertility doctor. Any way, for now I’m mostly making sure that I don’t have shingles for the rest of my life. That’s just not okay with me. Each visit costs $90 per week for herbs. This is pricey, especially when you consider this is an out of pocket expense. So how does the average woman, who wants natural healing options, afford alternative healthcare? I’m not sure I can answer that, but it’s led me to think about sacrifice. Since I’m Dominican, I grew up hearing about the value of sacrifice all my life. But really, what does it mean? Well, it’s giving up something you love for something which may potentially be more important, for example, luxuries for your children’s clothes. That translates into to money for me. I’ve never been particularly attached, so long as my needs are met, but this is really cutting into my lifestyle—that and my recent choice to quit one of my jobs. So for $360 per month, I can cure my neuralgia, or I can buy a car or something. A no brainer, when I think of it. To stay healthy, I gave up a toxic environment. Now I need to pay extra to stay well. Hmm…

I’ll say this. I know the herbs are working. Here’s how: the other day I whacked my bare toe on a table leg. As I prepared to react—nothing happened, until about 10 seconds later when the message finally reached my brain. Just as I was explaining that it didn’t hurt after all, I gave a hearty yowl. This delay in the synaptic messages delivery from the PNS to the CNS is significant. Neuralgia is a condition caused the inability to shut down the pain signals of the body. After I soothed myself, I smiled and went on to brew my nightly medicinal herbs. I know that I’m getting exactly what I’m paying for. How wonderful.

Mental health counseling, chiropractic care, massage, gym membership, acupuncture, Somatic Experiencing, yoga—all out-of-pocket expenses—are often expensive and not covered by health insurance. When those services are covered, they’re generally offered to those among us who already have a wealth of resources. This is a good spot to plug Charlotte Maxwell Cancer Clinic for women that provides complementary care for women who were poor before cancer. (Learn more here: http://www.charlottemaxwell.org/). The practitioners offer their services such as massage acupressure, Reiki and hypnotherapy for free in the CMCC clinics, and on occasion, at the home of women who were poor before being diagnosed with cancer. For the rest of us, we need to provide for our care. It’s not an option to go without these types of services and care. It’s easy for me to say that since I don’t have children; however, I am willing to support the care of women around me with fewer resources, and I’m not the only one. I have been a member of a powerful community of people who share resource. Ultimately, we’ll either pay for preventive care and services, or we’ll pay the doctor for prescriptions that don’t always work. Personally, I’d rather not stress out and get shingles. If I had it to do over, I’d go for a few more massages. We need to value ourselves and our well-being by prioritizing our care. We owe it to ourselves and to our families.

Visibility: the Fear and Redemption of Being Seen

On By Edissa Nicolás-HuntsmanIn Emotional Wellness1 Comment

 

 

We don’t want to stand out. We don’t own our gifts and talents. We shy away from the limelight. Students drop a class on the day that they are to present. We can’t stand to have our pictures taken. We put on brave faces and don’t admit to our troubles. Why do so many of us fear visibility? Let’s examine the tendency to hide and the motivation behind this action.

 

 

As an undergrad I studied literature with a voracious appetite. When I first learned the concept of “the gaze” and how some of us have the status of the viewed or the power to cast down our gaze upon the object, the body of the other, it sounded true, profoundly true, and unquestionable. It has the potential to humanize or dehumanize. As a woman of color, I have often been subjected to the unwanted gaze. I have been defenseless against it, and I have also been enslaved to it, desiring it and needing it to feel alive.

 

 

Unfortunately, too many people wander through life unable, owing to trauma or abuse, to accept love in the form of healthy relationships. When you’re a teacher, you encounter people who reside all along the length of this continuum, in which the opposite extremes of this reality are the most challenging: the needy “hungry ghosts” (so named by Thich Nhat Hanh), whose bottomless hunger attempts to consume your very soul, and the stalker, bent on owning, controlling or destroying what she cannot have. Both are dangerous. Both need love. Both may not be able, ready or willing to accept the gift. Audre Lorde said that “we fear the visibility without which we cannot truly live.” This is must be true. I’ve read that sometimes schizophrenics don’t like to take medication because they lose contact with the voices in their heads, their friends, their community. In a sense, they are constantly being seen by their personalities. They are never alone. Barring mental illness, we all do intricate dances, moving between solitude and companionship, stepping up and sliding back.  But why do we let our illnesses drive us so deeply into isolation?

 

 

I believe we fear the visibility of our illnesses and diseases more than we do humiliation, which tends to be fleeting. We hide our worries, fears and doubts from others. We are expected to mask our pain, hold it together, go to work—crawl there if we must. I think of my unexplainable shame of having a shingles episode, going to work in agony. My mother insists that I not tell anyone about my shingles (if she only knew about this blog: ay-ya-ya!). More commonly, people feel apprehension to discuss cancer, skin disease, mental illness and depression. Ironically, though it is during the times when we are weak that support is most critical, we may not ask for help. Perhaps this ties in to some aspect of the American Myth of Meritocracy, the creed by which we live, consciously or unconsciously; being weak or sick places us in the “other” category, and we all strive to be included in the dominant culture, to assimilate into the norms that govern a “normal” existence, anything—anyplace—so long as we are not “other-ed.” We attempt to make ourselves invisible in order to avoid the yardstick of normalcy. This makes our suffering worse, possibly prolonging illness.

 

 

As a teacher, I find that visibility is a two-edged sword. In my quest to facilitate a classroom that is built on principles of engaged pedagogy, every student has a voice. On the one hand this is empowering for students to be seen; on the other, that visibility carries enormous responsibilities and ramifications. Some students have never been truly seen by a person in authority. This can lead to drunken power in some, usually those who already feel entitled or disenfranchised but who often possess lots of social power. It can also cause fixations in students, with the teacher as the unfortunate object of focus. A student may feel that she is special (which is not untrue) but will not know the boundaries of the relationship. These relationships can be sexualized in the mind of the student, and in a college setting, this doesn’t always feel safe. I sometimes feel vulnerable to the returning gaze. Suddenly the student wants more than I am willing to give; he takes it personally when he is not privileged above others. I cannot turn out the light. I have to see the relationship through to the end, praying that the semester will conclude well. Still other relationships are precious. The connection is deep, lasting and mutually reciprocal. I cannot have the one without exposing myself to the other. I have to be open to both, or I may miss a gem.

 

 

In my maturity, the need to stand out  and take up more room than is necessary has lessened, reduced by the loving relationships that sustain me in authentic ways, rendering the superficial gaze, just that. Yet, I understand that we must be seen in a loving, compassionate light if we are to thrive. In life, our good friends see us; their gaze nurtures us. I am learning to trust people more by opening myself to sympathy and empathy. It does not make me weak, as I have always assumed. It makes me visible. Had I discussed my shingles sooner with more people, I perhaps would have received more advice, and maybe recovered faster. I am stronger in community than I am by myself. I understand that better, and it’s blessing me.

 

Manifesto of Pain: Winding Down a Season of Trauma

On By Edissa Nicolás-HuntsmanIn Pain, Trauma3 Comments

I was wondering why I had one outbreak after another for five weeks. I couldn’t seem to stop them. Every time I thought I was well, a new rash developed. As a result, I wasn’t sleeping properly because of the constant pain I was experiencing. Another interesting detail I noticed, and could not initially interpret, was the odor of my body. I found it acrid, even after a shower. I believe that cortisol and adrenaline were to blame. Like an injured animal, I was in high-stress alert. Stress was prolonging my shingles, causing me more pain. Here’s what I now understand:

Real pain needs real medicine.

It is time to take a look at the body’s Central Nervous System (CNS). Our bodies have a dual nervous system, the CNS and the PNS or Peripheral Nervous System. The Chickenpox virus lives in the spinal cord, the CNS. The rash itself attacks along the PNS on the body and skin. Neuralgia, associated with shingles is a consequence of nerve damage on the PNS. The PNS system contains the nerve cells that travel to the CNS. Nerve cells, unfortunately have a kind of binary functionality; they’re either on for off. After weeks of being on, nerve cells may no longer know how to shut off. In a sense, they atrophy in an “on” position, which is why a very common side effect of shingles is the chronic pain caused by nerve damage, known as neuralgia. Some unfortunate souls experience neuralgia for upwards of six months post-shingles! Poor dears.

  nervousatlasgroups

It was only while talking to a friend of mine who lives with chronic pain that I understood that my pain had not been addressed by my medical provider. Even though the doctor herself told me to expect pain, she never prescribed a pain medication beyond Motrin, and even with Motrin, I was not prescribed the maximum dose available. My gynecologist gives me a higher dose of Motrin for menstrual cramps. At any rate, after trying to “bite through a nail” for another week, I crawled back to the doctor, balled myself up on the examination table, and wept openly. I managed to finally get the lowest dose of Vicodine available. It didn’t help much, but I stopped sweating. My offensive B.O.? Gone by morning! Also, the doctor doubled my dose a day later. I finally slept the entire night. The next day, I had a smile on a face. I knew my body could finally begin the healing process.

 

I’m fascinated that while in my doctor’s office, writhing in pain, she was trying to give me antibiotics. Surely I had something else, she thought. This was not a normal shingles outbreak. Well, what if one’s skin is brown and one has had about four consecutive outbreaks in a five-week period? How will that look? Through my pain I had the presence of mind to reject the antibiotics, which were in part responsible for my weakened immune system, leading to my original outbreak. At home, while awake in the early morning hours, I looked at pictures of shingles rash. They, in fact, looked exactly like what I had, only on brown skin, no big surprises. But, was my skin color playing a leading role in my treatment? I think so. An additional powerful realization of how lucky I really am, knowing things were bad for me, was seeing that I’ve had a relatively mild case of shingles. My heart goes out to people who are suffering with severe cases. That pain must be unforgiving. I pray that those people had proper opiate pain medicine. I’m convinced that untreated pain will prolong shingles. This is a compounded travesty. Let no one who reads this allow anyone you know to go without the appropriate pain medicine during shingles.

 

I have had some comforts, one of which is laugh therapy—did you even know that there’s such a thing as Humor Therapy? Well there you have it. We all need a good friend, or ten, to make us laugh, let us cry and miss us when we’re down and out. One friend in particular has seen me through this crisis with sheer exuberance. Somehow, just at the moment when we are both about to cry, Robyn will say something that brings tears of laughter to my face, sending me running to the bathroom to void my bladder and avoid an accident. I don’t know how we manage it, but this unexpected joy has brought me back from the brink of darkness numerous times over the past five weeks. I know it has been the same for her. Even when we are laughing at ourselves, we look through a lens of compassion, understanding and childishness, touching the innocence in ourselves. We get silly people! And, it heals us deep down where the hurt curls itself up. Laughter is one of the few ways I know to naturally get high, elevate your mood, and stay in your body.

 

 

I don’t have all the answers or even fully understand this episode in my life, yet. What I do know is that talking to friends has helped. They have led me to alternative care. Their advice has translated into self-advocacy. Friends have driven me to the doctor’s office. Friends have let me cry when I couldn’t hold back the tears any longer. Friends have made me laugh my head off. Mostly, I don’t feel alone in my suffering. This has changed everything. I know I can’t rush ahead blindly. I must be mindful and manage my stress, avoiding extremes. I get to start over. Tea, anyone?

 

A Visit to the Medicine Man: My Introduction to Chinese Medicinal Herbs

On By Edissa Nicolás-HuntsmanIn Chinese Medicine, Pain2 Comments

On my odyssey of healing from shingles, I’ve stepped into the world of the ancients: the Art of Chinese Medicinal Herbs. I know nothing about Chinese Herbal Medicine except what I’m experiencing with Dr. Kang, O.M.D., in San Francisco. So far, I’m loving it.

To me Chinese Medicine means acupuncture needles. Because of this association, I was nervous about receiving an acupuncture treatment as my past experiences with acupuncture have all led to intense physical and psychological reactions. The needles stimulate me in profound way. More than once my head and feet have been on fire with enough vivid sensation to make the doctors react with haste to remove the offending needles. My first visit resulted in a nearly psychotropic trip in which I could not walk properly because I had no depth perception. The world was flat as I held my hands out in front of me, feeling for objects jutting into my space and patted at the ground with a foot that extended into the nothingness before me. Needless to say, I’m apprehensive to undergo acupuncture treatments, so it was only because it was recommended several times within an hour that I agreed to make the journey to see Dr. Kang.

To my delight, I was not treated with needles. Dr. Kang is all kindness and compassion. This is really important since shingles is traumatic enough without one having injury done by practitioners. I found him to be intuitive and a deep listener. He warned me to avoid stress, admonishing me to not repeat such a dreadful experience. To this wisdom I could only nod my head in agreement. He seemed to understand my pain so well that my friend, who took me to see Dr. Kang and sat with me during the examination, and who has been under Dr. Kang’s care for about five months, wondered if he hasn’t endured shingles himself. I personally doubt that such a calm man could work himself into such a place, but I’m the patient here, not he, so it shall remain a mystery.

After a consultation with Dr. Kang in which he asked me questions about my situation, he prescribed medicinal herbs. Dr. Kang measured my pulse on both wrists for an extended time, making notes all the while. He examined my tongue, too, which even I will admit looks scary. (More on the tongue in a future post, I promise!) What’s fascinating about this process is that I know nothing of what I’m ingesting in this steamy cup of root slivers and flower petals. It’s a faith walk. But isn’t this what we often do with Western medicine, as well? A doctor looks at us for five minutes, maybe he looks us in the eye, maybe not, and depending on your skin color, gender and age, a range of possible treatments will result. Dr. Kang, unlike some, is prescribing the medicine for the illness and the person without such a filter of services—you’ll get the herbs you need for your ailment. He’s treating human beings with human kindness. Lest you think that was all, he also gave me a list of food restrictions, which means that I can’t eat anything in my refrigerator. What a hoot! I don’t even mind, especially if it means that I’ll be well again, soon, and fully recovered. I’ll give up just about anything for my health. I’ve already given up so much.

His diagnosis of my situation confirmed my own insights and inspired my trust. The real threat to my health is permanent nerve damage, also known as neuralgia. My impressions during meditations are that my pain is manifesting in my body often without any corresponding tissue damage. Dr. Kang seemed to think that the rain exacerbates the symptoms of pain. I wasn’t sure, but the three days prior to my visit had been hellish, and there was rain a foot in San Francisco. Everything he said meshed with my understanding of my own situation or of my visualizations from Reiki sessions. In the end, Dr. Kang felt that acupuncture would not help me. I actually breathed a sigh of relief because I was secretly terrified of my entire body catching fire this time. Thank God for small favors! This gave me the opportunity to look at my healing through a new lens.

I took my herbs home and boiled them down to a concentrated brown liquid. The first sip was interesting, bold and pungent with a bitter aftertaste. At this point, I’ve stopped trying to taste the stuff and simply give thanks for the medicine I believe can heal me. Cut to the chase, Edissa. Drink your medicine! I downed the remaining elixir in three gulps and struggled to catch my breath, relax and hold it down.

I survived! I rewarded myself with a grape. Let’s see what the doctor says next week. Better yet, pay him a visit if you’re in need of care. I don’t think you’ll regret being seen by the Medicine Man on Clement. photo

Gleanings from a Shingles Bell-Jar

On By Edissa Nicolás-HuntsmanIn Depression, Pain, Trauma4 Comments

This week marks my fourth week battling Shingles. It is now officially a saga. What can I do now that the pain has moved beyond what Motrin can control? I am beside myself with pain—literally; I’m like an alien unto myself, watching myself wriggling beneath a glass. I don’t recognize this body anymore. This new level of pain, discomfort and sensation is almost more traumatic than Shingles itself.

After two weeks, I felt that I had sufficiently recovered to claim that I had overcome my ordeal, surviving all the worse that Shingles has to offer. That is when my second outbreak began. All of the healed areas were once again under siege. A new level of sensation has taken hold; torture owns my body. Itching, biting, and walking creatures move along the flesh of my chest and march beneath my arm at will. This can’t be real, I tell myself, but it is. My face muscles convulse; my eyelids—the tops and bottoms on both sides—twitch and pulse. My fingers go numb, and a star of pain ignites in the center of my back, exploding into emptiness. I cancel plans. Buckle down for another term. My sadness, resignation and grief at my emotional and physical distress are overwhelming.

When this all started, with my usual optimism, I decided that everything would work out fine because it was the beginning of my spring break, and at least, I could stay home and convalesce, and perhaps with some luck, party the last weekend before school. This is the story I told myself. This is the presence of mind I embraced. What a ridiculous fantasy. I urged my partner to go on vacation without me because there was no way I could do anything, go anywhere or see anyone. I have had to remain inside and sit with my pain. I maxed out on Motrin, going to the edge of the daily dose, reeling with pain at the end of the it; watching the seconds tick by waiting for the next capsule. I even tried to dull the pain with alcohol, but the beast will not be lulled by bottled trifles. I must ride this wave. I have no choice. I have to go on.

This is the new trauma of this illness.

The pain overwhelms me and my body coils in on itself like an angry snake. As I catch my breath, my eyes drown in tears. I can’t believe that I’m here—still—again! I’m not sleeping, because the pain is more intense at night. My teeth feel like they will crack from clenching of my jaw against the pain, and my head throbs with the pressure. I don’t understand what’s happening, but my body temperature drops, giving me chills and covering my body in thick sweat; the pain rises in waves all through the night. I wake depressed, but I put on a brave face. After all, I am a warrior. I am a survivor. I can handle this.

I cannot.

I am flooded with heaviness and the weighty tenderness of a body deprived of rest and fed on a sleepless night of torment. I begin to sob in agony. I am home alone; I can weep with abandon and no one will hear me. This is the problem. I am so alone with my pain. Depression has moved in and is finding the ground fertile. I miss my friends. I miss hugging people. I miss running around with the beautiful children in my life. I miss the amorous touch of my lover. I am an alien in this body. I reach out to friends—over the phone. Please make me laugh or forget. It is little consolation. I yearn to be well again, whole and pain-free.

This is trauma, emotional and physical trauma yet it does not compare to other traumas. To me, Shingles is a stern teacher. I must forgive her. Even if I don’t like the lesson, mastery is required. The imposed isolation and the loss of the vibrancy with which I customarily live are more than enough to crush me. I don’t have much to give, because just putting on a shirt feels like an accomplishment. But what I have learned is that people are precious. I don’t think I’ve ever taken this for granted, but now it’s even clearer. I can’t wait to hug people without flinching. Screaming babies will be no obstacle to quality time. I’m looking forward to spending more time with people. I know I’m not the only one affected by this disease. As a community, our lives have been altered.

MilletTheGleaners

On my way back and down from the crest of the curve, I am aware of how steep and sharp the descent is, no less perilous than any other journey of the human spirit. I hope to understand more about myself as I emerge from this dark night of pain. Like one of Millet’s peasants, out of sheer desperation, I am gleaning the earth for sustenance. I plumb my soul in search of the Edissa I’m becoming, holding my hand up to the glass in an awkward greeting. I see me there, and wonder, Who will be left from this fire? Will I know her?