Two Weeks Worth of Blog!
May 30, 2009
We start the day at 6:30 AM, in a lovely accessible bed and breakfast in Cambridge, Mass, and by 7:30 are loading all our nine bags and my power wheelchair into taxi for our Air Canada flight to Montreal. Our driver is a laid off hotel manager turned taxi driver, the fourth Moroccan to help us on our journey. When we get to Air Canada's desk, they ask if we'd like to go on an earlier flight with a larger cargo bay for my chair, so we take off for the 38 minute flight over New England and spend the day at the Travel Lodge, resting and looking for edible food. This time the cab driver is from Mauritania and proves unreliable, as does the porter who promises to meet us in ten minutes where we've checked our bags. The result is that we get to Cubana late, and I have to fight with the local employees about whether my chair can go on the plane. One man tries to tell me it will have to stay in Montreal until I return. I just keep repeating that I need it, and eventually the man who actually has to fit things into the cargo hold shows up and figures out how to do it. Then we have Canadian Customs. What freaks them out most is my possession of yogurt and a screwdriver for disconnecting the wheelchair battery. They want a note that proves that it's medically necessary for me to eat. They need a supervisor to authorize the tools. The Cubana desk clerk has told us to run. Customs tells us to wait. Eventually, the Cubana representative is found and authorizes tools and yogurt, and we're told the chair will probably make it, so we go on board. Our seat-mate is Veronique, one of a group of ten from the Comite de Solidarite Trois Rivoirs from northwestern Quebec. They are going to spend ten weeks in Cuba teaching about prevention of animal diseases that can affect humans.
By now it's been twelve hours and I'm exhausted to the point of nausea—too tired to enjoy reading, ready to arrive. A half hour out of Havana everyone begins chattering, the sound of happy excitement like a multitude of sparrows all chirping at once. And then the lights of Havana are below us, and we land.
We stay in our seats, waiting for a wheelchair. I'm expecting it to take a while, but suddenly two men in guayaberas wearing tags from MINSAP, the Ministry of Public Health, appear on the plane, talk with the crew and come to announce they are here to help me to a manual chair while my power chair is unloaded. They will stay with me, they assure me, until I'm at the van. At the bottom of the ramp is a smiling woman with a clipboard, looking amazingly fresh and relaxed given the late hour. Aurora? She asks. When I say yes, she says she's Rosa from CIREN, here to welcome me. The MINSAP guys and a large male nurse from CIREN take the bags from Leah's hands and we go off to customs. Here the yogurt and tools don't interest anyone. It's the CPAP machine that needs explaining. Rosa tells me that the director has told her to take very good care of Sra. Aurora. When I mention that I'm from Puerto Rico she says, we know. As we roll down the ramp into the airport, my eyes fill with tears. She asks what's wrng and I say I'm happy. She says, “Estas emocionada? “ (Are you moved?) Eso es bueno.”
Outside, four Cuban men and Leah are trying to figure out how to fit all our luggage plus all the people into the small van. Come on, Rosa says. Let's go change your money. When we get back to the van, people are eyeing Leah's slender build and proposing that she and Rosa share a seat when the nurse says he's going to take the wheels off the manual chair and stow them above the suitcases. The driver says it will be difficult. The nurse is scornful. “How can this be hard, when I take wheels off trucks?” Sure enough, in two minutes we're all in, though the back doesn't latch and there are jokes about people running behind us picking up bits of our belongings.
By the time we arrive at CIREN it's close to 1 am, but the nurse on duty, Lula, is bright eyed and warmly welcoming. She says they're going to take good care of me. She shows us our rooms-- a spacious living room, bedroom and gigantic bathroom with cement tile floors and fluorescent lights on the walls. Air conditioned, thank God. Cuba in summer is no joke. Then she sits next to my bed and does the intake interview. She says the on call doctor would have come by as well, but they've decided to let me sleep. Over and over, everyone tells me I'm home, that I'm among family now, that I'll be cared for. Estas en tu casa, says Lula, as she gets up to go.
May 31. Awake at dawn. Bird song fills the air and I get up and go to the door to get my first glimpse of CIREN by daylight. There are trees everywhere: palms, banyans, almonds, flamboyanes, a small pomegranate, and lush, brightly colored shrubs. Our house has five bedroom and a dining area. Lula has said to call her when I wake up so she can introduce me to the other staff. Nurses work one day on and two days off. She also introduces me to the cook and the woman who will be cleaning our rooms. Right now there are only two other patients in our house—one Cuban and one Venezuelan. A Haitian woman will be coming in a few days. Lula and the nurse just coming on duty look at my power chair and agree I won't be needing it except for the longest transfers. I say I'll use it to explore the neighborhood. In chorus they say-- at the beginning. Lula says firmly, you won't need it after that. You can count on giving it away or selling it. I can't imagine a nurse in a US hospital making a promise like that. It's all about liability and caution. I try to explain this to Lula. She says, well if I'm wrong it will be a pity, but I won't be. Your quality of life will get better. You'll see. We have a whole cemetery of canes and chairs.
Lula, the new nurse Barbara, and the cook confer about my allergies and decide I should eat my sardines until I speak with the dietitian. Trying to get me yogurt and boniato (Cuban sweet potato) before there's been paperwork will involve “tramites.” I have sardines and fresh tomatoes. Then Leah and I go for a walk to buy fresh produce and explore. We end up getting pineapple slices and cucumbers. For lunch, they've made me rice and grilled chicken, and a tomato and cucumber salad. It's delicious. I don't at all mind the prospect of daily chicken and rice.
That's when we meet Robney and his mother Teresa, the Venezuelans. I say hello and we exchange basic data. They are finishing their second 28 day cycle You've landed in the best there is, Teresa says. Robney says, in one month you'll be walking. I smile and say I hope so. No, he says. It's your decision. We're the ones who do the work. His speech is hesitant, as if he needs to search for words. I saw him earlier, walking slowly along the side of the street with a young woman. His right arm is in some kind of splint. His mother turns to us and says. Three years ago he couldn't walk or talk. My eyes widen. Robney was in a car accident and had a hematoma, bleeding in his brain. They came here and he was properly diagnosed and got surgery. Now they're back for rehab. Thanks to our president Chavez, Teresa says. He put it into the constitution that health is a right. They can't take it sway from us now unless they have another coup and run off with the whole constitution. He made an agreement with Cuba: oil for health care. All of this is free for us.
June 2, 2009
It's dawn in Cuba, the beginning of my first full day of testing at the International Center for Neurological Restoration. Ever since our arrival, late Saturday night, we've been immersed in generosity and kindness. Everyone tells me I'm in good hands now, that I'll be taken care of, that they are here to help. Five people meet us at the airport-- two men from the Ministry of Health, a male nurse, a driver and Rosa Maria, the representative from CIREN's International Relations office. Rosa Maria waits at the bottom of the ramp, beaming welcome, walks us through customs and money exchange, and tells me the director of CIREN has told her to take very good care of me.
After a lot of hilarity and improvisation, five people, two wheelchairs and nine pieces of luggage are wedged into a small van and we drive through the night to Neuro Villa, the complex that houses patients from two of CIREN's five clinics. Each house has five or six patients and the person each of us has brought along to help with basic attendant care. We've been assigned one of the best rooms-- a small suite with a bedroom, living room and immense bathroom. And waiting there is Lula, radiating warmth and ready for a preliminary intake interview at 1 am. She says the on call doctor would have come by as well, but they decided to let us sleep. When he does come, the next morning, he asks repeatedly if we have any problems he can solve.
The first co-patients we meet are Robny and his mother Teresa, here from Venezuela. Six years ago Robny was in a serious car accident, with a skull fracture and hematoma. He was in a coma for 18 days. Three years ago, when he first came here, he couldn't speak or walk. Last night at dinner he told us he'd walked 6.2 kilometers at the gym that afternoon. “Paso por paso se llega a Roma,” he tells us. Step by step you get to Rome. When we meet, he looks me over and says one month. In one month
you'll be walking. Thank you. I hope so, I say, smiling. No, he says. It's not with me. It's your decision. You have to work. We're the ones who do it.
The nurses are equally adamant. Lula and Barbara, the new nurse coming on duty, are looking my wheelchair over. They agree I won't need it except for the longest trips. I say, and for getting around the neighborhood. In chorus they respond—At the beginning. After that you'll be walking. Lula says, you'll be giving it away soon or selling it, but you won't be using it. I'm a little shocked. No nurse in a US hospital would say something like that. What with liability and the fear of offering “false hope, “ every word about outcomes is cautiously framed. I tell this to Lula. I don't mind being wrong, she says. If I am, it'll be a pity, but I'm not. We have a whole graveyard of canes and chairs, equipment people leave here.
Over lunch, Teresa says over and over, we're here because of our president Hugo Chavez. He wrote the right to health care into the constitution. They'll have to have a coup and run off with the whole constitution to take it away from us now. Under agreements between the Cuban and Venezuelan governments, Venezuelans come here with all expenses paid. Cuba exchanges medical care for oil. Rodney had brain surgery three years ago. This time he's been at CIREN for two months and has another month to go. From time to time he bursts into song, romantic Venezuelan love songs in a rich tenor voice. He is relearning to read, and then plans to study music.
Venezuelans make up the largest nationality of foreign patients at CIREN, which has seen 40,000 people from 84 countries since its establishment by Fidel Castro in 1989. 22,000 have been Cubans. At our orientation for new patients we meet two more Venezuelans, including an indigenous man from Ciudad Bolivar, and an Angolan woman whose son can neither hear nor speak as an aftermath of malaria. She took him, she says, to a military hospital in Angola, and a Cuban doctor names Raul told her to apply to CIREN. The second Venezuelan, the talkative mother of a fifteen year old, says doctors in her country told her the girl would always use a catheter and never walk. But when Cuban doctors evaluated her they said she didn't need the catheter and had an 80% chance of walking, so here she is. The woman also tells us about Carolina, whom the staff remember, a quadraplegic woman who was here for two years and now walks, using only a brace from the knee down on one leg.
Last night we received a visit from Maria Concha Morales, Mary Conchy, as she's called, a doctor and professor of traditional medicine at the Policlinico Plaza in Havana. She and her friend, a medical researcher, came to collect a suitcase of donated medicine and books. Within minutes she's read my pulse, begun working pressure points on my body, and is teaching my helper Leah how to do Tuina massage one my back until the skin can be easily lifted. She has also offered to set up Reiki training for us both, saying it's the most fundamental level of healing work because it draws on my own energy. It's an agreement with myself, not with an outside force. All the rest, herbs, flowers, medicine, will work much better. Leah and I must become Reiki sisters. How's Sunday?
She also presses points to relieve an attack of my sniffing tic, and arranges to get us a complete alternative emergency medicine course on my flash drive. She lights up when she sees that we've brought her a 2006 Physician's Desk Refernce. “Que maravilla! Now, this is a gift!,” she says. “For this, she says with a grin, we'll teach you a course every week!” I ask her about chronic fatigue, how they treat it. For us, she says, chronic fatigue is from not wanting to be here and now. Epilepsy is wind in the liver. How do I sleep? Terribly, I say, and she says sleep is the most important neuro-restorative there is. We have to take care of that yesterday! Your closet full of pills won't do you any good without sleep. Slow deep breathing, the pressure points for insomnia and the back massage from Leah. That's the homework.
When I mention my power chair, how they tell me I won't be needing it she asks me have I read Deepak Chopra. You have to want this for yourself. You have to imagine it or you won't get it. I tell her I've done that for years. Yes, she says, up here-- touching her forehead. But you have to do it here—from your heart. I tell her about Rodney's long walk the day before, how it occurred to me for the first time, after hearing him, that I could hike again. I told her about my favorite trail in Redwood Park, in the Oakland hills, and how much I loved it, and she lit up.
Her visit has made me relax about all the allopathic medicine in store for me. The epileptologist who passed by yesterday seemed set on giving me drugs. He will be the head of my personal team of five or six practitioners. But after listening to my history, he seems willing to just recommend meds. This morning I will have a blood drawn for a whole range of tests, an EEG, a neurophysiological evaluation and a psychology evaluation. This will be day one of a full week of tests. On Saturday they'll unveil my personalized plan.
Before I left Berkeley I decorated my wheelchair with my photograph, and brought a bag of rhinestones to glue on every available surface. I can't do that now, and I'm removing the photo today. A year ago I wrote that my wheelchair was an exoskeleton. Yesterday it became a bridge that I will cross and leave behind.
Day One: June 2, 2009
The first day of testing starts with an auditory test that measures how long it takes sound to travel from my outer ear through the various stages to my brain, and a nerve test that measures the passage of sensation up my arm—a sensation like an electric pulse that is unpleasant on the left side and painful on the right. Then the EEG, and home for lunch. I tell Lula I've never had these tests, how everything in the US is measure out in the tiniest increments, how every single thing has to be justified. I end up telling her about the abusive ambulance crew that mistreated me so outrageously just before I left. She says she went to Chile once with a patient. She said they had everything, things Cuba lacks, but the nurses would give patients medicine and say maybe three words to them. “The most important part is this,” says, gesturing back and forth between us-- the human relationship.
She has asked me to bring the power chair because the clinic we're going to has big ramps and it will save her having to push me uphill. But don't identify with the chair, she says, it doesn't belong to you. It's just borrowed. I tell her what I wrote about it being a bridge. Good, she says—write it down. I tell her how much difference it made when I got it and she says she understands that it played an important part in my life, but that was a stage, and it's over.
We also talk about shortages. The bathroom at the clinic has no toilet paper or soap. When I tell her she shrugs, then goes and gets me a small piece of TP from an office. Later when I'm being amazed about all I'm getting, she says but we lack a lot of things, almost everything. I say I know. She says yes, but reading it is one thing-- now you're living it. Like soap and toilet paper, I say. We talk about the intense alienation of the US, how a lot of the time people don't know their neighbors or make the kind of commitments to one another that are the fabric of life here. She says, we don't have things, but we have ganas—the will—and that goes a long way. In the US you have all kinds of things, but no ganas.
So Leah and I learn to use a hose instead of toilet paper and soak up the ganas everyone has to be of help to each other and to us.
June 4, 2009
After the morning tests, Leah and I head out with Gabriel the taxi driver to run some solidarity errands. First stop. ACLIFIM, the national office of the organization of people with physical disabilities, where we meet Ana, with whom I corresponded. We're shown into a room whose walls are covered with gorgeous, brilliantly colored paintings, the work, Ana tells us, of a quadraplegic man who painted with a brush held in his teeth. Not knowing exactly where to start, I ask about disabled artists. Oh., yes, she says, we have an annual festival. It begins at the local level and then artists compete for places in the provincial, regional and national festivals. This year's event was just last month.
The Cuban constitution guarantees full equality to all people, so there is no equivalent to the ADA, no law specifically made to guarantee the legal rights of the disabled. ACLIFIM steps in to see to it that the policies are carried out. For example, every Cuban has the right to a free education all the way through graduate school, but there is still individual prejudice, which can create administrative barriers. ACLIFIM intervenes in such cases. They also do public education, working to bring popular consciousness into line with government policy. Disabled people are also guaranteed the right to work. Ana tells us there is zero unemployment for any disabled person who wants to work. If a disabled person trains in a particular field, and there is a place near them where that kind of work is done, if there is no job available, one will be created for them. This is when I cry.
Almost all disabled children are mainstreamed. There are two special ed schools, but these are seen as transitional programs, with as many children as are able moving into their local public schools. For children in other areas of the country for whom the general classroom will not work, a traveling teacher comes to the home to do instruction, but takes the child to the local school a couple of times a week to make friends and develop social skills.
I show Ana the materials I have brought from Axis Dance Company and Sins Invalid, whose work centers on disability and sexuality. She is thrilled and starts talking about organizing an international disability and dance festival. They haven't ever invited foreigners before.
I ask her what are the biggest problems they face. Access, she says, is number one. Streets, buildings, transportation are not accessible, and though there are plans to change this, the blockade, with its resulting shortage of material goods and overall economic impact, makes it very difficult. Cuba has a severe housing shortage, which, combined with the lack of accessible buildings, impacts disabled people especially hard. There is also a major shortage of wheelchairs, although two factories have just been built to start manufacturing them in Cuba.
Later in the day, as we roll along the Malecon, Havana's 8 kilometer waterfront walkway, we pass one man and then another in old manual chairs. Both are missing legs. I'm in my portable manual chair, which I consider pretty uncomfortable compared to my power chair. The first man stares openly at my chair and says “that's good!” I move closer so he can look, and he takes in every detail, stares after me when we move on. The second man cranes his neck, and a few minutes later we see him coming back in our direction to look again. I'm glad I'm not in the power chair. It would be like driving a Rolls
down a muddy track where people struggle with mules. Much too much wealth. I'm glad I'm planning to leave the manual chair here, but I wish I could give it away thousands of times over.
Shortages are not what they were in 1993, the year I came with Global Exchange's Freedom to Travel trip, 175 USers defying the travel ban. At the height of the special period, there were almost no cars on the road, only a few hours a day of electrical power and not enough food. Now there are urban farms everywhere, people look well fed and there is traffic, but the bathrooms at the hospital have neither toilet paper nor soap. I show one of the nurses the hand sanitizer I brought, made from oil of thyme and oregano.
Next stop is CENESEX, the center for sex education. The building is undergoing massive renovations so the woman who comes out to find out what we want meets us in the small outer reception area, with dust and tools all around. Magaly Gonzalez Jimenez is one of the specialists on staff. When she grasps that I'm there to give them things, not ask for them, she is delighted. When I tell her about Sins Invalid, she gets really excited. That's just what we're starting to work on, she says-- you can help us! There is going to be an international sexology conference in January and I should get people to come. And to write for their journal, Sexology and Society. The radio is on in the background and she says, that's one of our staff people. She turns it up so we can hear. The speaker is explaining that when a trans man is in a relationship with a woman, this is a heterosexual relationship. Directed by Mariela Castro, daughter of Raul Castro, CENESEX has pioneered trans liberation work in Cuba, as well as work on lesbian, gay and bisexual liberation, all of which comes under the heading of sexual diversity. In the entryway is a poster of two shaving brushes side by side. “Two of a kind can make a pair,” it says. By the time we leave we are loaded down with educational materials, including a book on transsexuals in Cuba, all of which will be invaluable for my writing. “These are some of our three a.m. hallucinations,” the woman tells us--”things we dream up.” They include pamphlets on STD/HIV prevention specifically written for different populations: adolescents, medical students, cross-dressing men known here as transvesti. We leave with an appointment for July and several copies of their journal.
On the way home we stop for more phone cards, and a bottle of hot sauce because the food at CIREN is dreadful. No one can tell me why there's no seasoning on the daily chicken. We also picked up some ripe tomatoes and limes. Tonight's chicken will be much more flavorful.
June 4, 2009
Day three. So far I have had a full panel of blood tests, tests to determine how well sound travels from my ear to my brain, and sensation from my wrist to my elbow to my brain, an EEG, a neuropsych/psychology evaluation, a series of tests to establish a baseline in terms of my motor function, including a lot of measurements of my legs and arms—an intriguing combination of high and low tech—, a dental check up and today a nearly two hour holistic medicine evaluation. Tomorrow I'll an MRI and some x-rays and possibly a psychiatric evaluation, which is always included for epileptics.
The dentist talked to me about my tooth grinding, explaining that there's a vicious circle of tight jaw muscles and tooth grinding that can be interrupted by a combination of wearing a tooth guard to stop the signal to the brain created by contact between my teeth, and by practicing consciousness of the habit and deciding to stop. She also recommended using a muscle relaxant at times of stress, to interrupt the cycle from the jaw-muscle end. So they'll be making me a mouth guard!
The holistic doctor talked about life lessons, how every circumstance offers opportunities to learn what we're supposed to—how to live. He said, “It isn't a matter of intensity—we should live as intensely as we are able to support. It's about balance. The sun is more intense than we can imagine. It lights up the whole solar system and supports all life, but it's in balance.” His perspective of Chonic Fatigue was fascinating. He said fatigue was a symptom not an illness, with many possible causes, and that it was dangerous to treat adrenal fatigue by itself, that often this involved stimulating the adrenals when the underlying strength to support it wasn't there, and this could make things much worse. He said I had excess liver chi constitutionally, which often leads to weak kidneys and pancreas, and that from his point of view the pancreas was the central issue. My blood work shows somewhat elevated sugar, but he was speaking of the pancreas in all its functions-- immune, endocrine, exocrine and digestive. Although his work is usually limited to supporting the neurological rehab, he said that in my case, for love of my father no doubt, he'll work with me to create a plan of action for the whole complex of other problems I have. Diabetes, he says, is associated with over-worry. That will be the emotional aspect of the work. For all of us, he tells me, it's about learning to live, learning the art of living in balance.
June 8, 2009
Well the hot sauce was a disaster because I broke out in hives, had to get a shot of benadryl and was groggy for the rest of the day. That was Friday. On Saturday it happened again, this time with tomatoes. But with the help of homeopathic apis, a remedy made from bee sting, I managed to avoid more than a small dose of antihistamines, and we were able to follow through on our plans for the day.
Vega is an electrical engineer who does a little work as a driver on the side, and my friend Karen has known him and his family for years. Silent at first, as he drives us across the city to the neighborhood of Santo Suarez, he begins a running commentary on the neighborhoods we pass through, until we pull up in front of the home of my father's close friends and colleagues, Daisy and Miguel. It's Miguel's mother's 90th birthday and there will be cake. Daisy's mother greets us with kisses and ushers us into a pleasant sitting room with high ceilings. Daisy emerges, her open face lit up with pleasure. Leda will be here soon, she says. Daisy and Leda have known my parents for 33 years, working closely with my father throughout the years. Miguel is a doctor. I tell them they are like cousins I've heard of all my life but never met. They beam at me, say that my father is like their father, too. I agree to share him, and they start telling stories from the various visits over the years. When I have explained my limited diet, Daisy proposes making me tostones and malanga—fried plantain and a boiled starchy root that I love. With the can of sardines I keep in my backpack, that will be a lovely meal. Daisy says I have to count on them more. When Leda and her husband Manolo arrive, we watch the short video message my father has sent, at my urging. They all melt at the sight and sound of him.
We talk about the health care system. CIREN is a specialist center, with nearly half the clientele coming from other countries, and is better resourced than some. There are hospitals from the 1940s still in operation. While the quality of the doctors and nurses is excellent across the board, that of support staff varies, and while some house patients three to a room, others have dormitory style rooms with up to 25. Recently their grandchild Beatriz suffered a terrible accident, colliding with her grandfather while he carried a pot of boiling water. At the burn center where they took her, there was another child with 2nd and 3rd degree burns over 60% of her body. Miguel says, in any hospital anywhere, they'll tell you you can't save a child burned like that, you ease the pain and let them go. The doctors debated what to do but fought hard for the little girl and were able to save her. But then, Miguel says, she'll need many operations, plastic surgeries, and where are the resources? Nevertheless, the doctors are amazing. While we're talking young Beatriz, four years old, comes home , still bandaged over much of her head. She was in the hospital for quite a while and is not used to company yet.
I ask about the disparities between health care centers. It's complex, they say. There are hospitals that were here at the time of the Revolution, and many more were built in the 60s---but we lack the resources to maintain them. The government wants to keep health care completely equitable, so they repair each one a little, when it would make more sense to pick a few strategically located ones and bring them up to the standard we want, and then do a few more the next year, and soon, instead of having them all be equally run down. Issues of central planning, bureaucracy, and over-literal interpretation of equality Then there are other issues that arose during the years of the Special Period. The Revolution raised people's aspirations, and then came a time of tremendous hardship, when their incomes couldn't begin to meet their goals. Some professionals left to work in other countries, in Latin America, Spain, the United States. The special period saw a resurgence of what Daisy calls anti-values, including the reappearance of prostitution, shady dealings connected to the double currency, opportunistic behaviors of various kinds, begging. PS-- she spells it Daysi, but I can't retype it right now.
June 11. 2009
My physical therapist is Jorge, a young father of two with eleven years experience and a passion for excellence. He's blown away by the dvd I lend him of Axis Dance Company—not just the beauty and power—what has him psyched is what it could mean for his patients if they could learn to flip a fallen chair into the upright position the way Rodney Bell does. Paraplegics who don't leave their homes because of the impassible streets who might brave the broken pavement if they knew they could right themselves from a fall. He takes it to the director who misunderstands his excitement and thinks Axis could be great for a disabled kid's school—seeing inspiration, not new rehab potential. O he takes it to one of the neurologists, starts talking it up to the other P Ts. You have to work intelligently at things like this, he says—plant seeds.
Jorge and I talk and work my body's weaknesses into strengths for five hours a day. I hear about his four year stint as a personal PT in a mansion in Chile with a millionaire family who had to be taught that they didn't own him. Which he apparently did on day one when he refused to work longer than his contracted work day.
June 13, 2009
I've been too busy to write and frustrated by the lack of access to my blog, and am running low on wifi time in the lobby of the incredibly over the top hotel; Melia Havana, so just a quick update. I've had a lot more tests and more to come. They are determined to understand everything about my pain. The MRI machine is finally fixed and I get that Monday morning, plus x-rays to check my spine for arthritis and other organic changes, and an ultrasound of my shoulder. The physiatrist diagnosed fybromyalgia and prescribed magnetic and electrical treatments. I am SO well cared for here! I adore my PT, who gives the most amazing massages to ease pain in my pelvis and upper back. We alternate working out with weights, on a bike, doing leg lifts, etc, with heat lamp treatments. I started outon Tuesday walking 16 meters and yesterday did 50. I also started B12 shots for the neuropathy (nerve pain) which seem to help. Jorge says we'll reach our goal, to have me dancing again when I leave.
There's so much more to tell, but I have to protect my hands and not type too much-- and have tech issues with my dictation program, which i'll try to crack tonight.
Today I sang Kalinka with the brain injured 18 year old girl fromt he Ukraine who gets fine motor and cognitive therapy at the same time as me. It was a deeply lovely moment, as she often spaces out and is unresponsive.
Til soon.
We start the day at 6:30 AM, in a lovely accessible bed and breakfast in Cambridge, Mass, and by 7:30 are loading all our nine bags and my power wheelchair into taxi for our Air Canada flight to Montreal. Our driver is a laid off hotel manager turned taxi driver, the fourth Moroccan to help us on our journey. When we get to Air Canada's desk, they ask if we'd like to go on an earlier flight with a larger cargo bay for my chair, so we take off for the 38 minute flight over New England and spend the day at the Travel Lodge, resting and looking for edible food. This time the cab driver is from Mauritania and proves unreliable, as does the porter who promises to meet us in ten minutes where we've checked our bags. The result is that we get to Cubana late, and I have to fight with the local employees about whether my chair can go on the plane. One man tries to tell me it will have to stay in Montreal until I return. I just keep repeating that I need it, and eventually the man who actually has to fit things into the cargo hold shows up and figures out how to do it. Then we have Canadian Customs. What freaks them out most is my possession of yogurt and a screwdriver for disconnecting the wheelchair battery. They want a note that proves that it's medically necessary for me to eat. They need a supervisor to authorize the tools. The Cubana desk clerk has told us to run. Customs tells us to wait. Eventually, the Cubana representative is found and authorizes tools and yogurt, and we're told the chair will probably make it, so we go on board. Our seat-mate is Veronique, one of a group of ten from the Comite de Solidarite Trois Rivoirs from northwestern Quebec. They are going to spend ten weeks in Cuba teaching about prevention of animal diseases that can affect humans.
By now it's been twelve hours and I'm exhausted to the point of nausea—too tired to enjoy reading, ready to arrive. A half hour out of Havana everyone begins chattering, the sound of happy excitement like a multitude of sparrows all chirping at once. And then the lights of Havana are below us, and we land.
We stay in our seats, waiting for a wheelchair. I'm expecting it to take a while, but suddenly two men in guayaberas wearing tags from MINSAP, the Ministry of Public Health, appear on the plane, talk with the crew and come to announce they are here to help me to a manual chair while my power chair is unloaded. They will stay with me, they assure me, until I'm at the van. At the bottom of the ramp is a smiling woman with a clipboard, looking amazingly fresh and relaxed given the late hour. Aurora? She asks. When I say yes, she says she's Rosa from CIREN, here to welcome me. The MINSAP guys and a large male nurse from CIREN take the bags from Leah's hands and we go off to customs. Here the yogurt and tools don't interest anyone. It's the CPAP machine that needs explaining. Rosa tells me that the director has told her to take very good care of Sra. Aurora. When I mention that I'm from Puerto Rico she says, we know. As we roll down the ramp into the airport, my eyes fill with tears. She asks what's wrng and I say I'm happy. She says, “Estas emocionada? “ (Are you moved?) Eso es bueno.”
Outside, four Cuban men and Leah are trying to figure out how to fit all our luggage plus all the people into the small van. Come on, Rosa says. Let's go change your money. When we get back to the van, people are eyeing Leah's slender build and proposing that she and Rosa share a seat when the nurse says he's going to take the wheels off the manual chair and stow them above the suitcases. The driver says it will be difficult. The nurse is scornful. “How can this be hard, when I take wheels off trucks?” Sure enough, in two minutes we're all in, though the back doesn't latch and there are jokes about people running behind us picking up bits of our belongings.
By the time we arrive at CIREN it's close to 1 am, but the nurse on duty, Lula, is bright eyed and warmly welcoming. She says they're going to take good care of me. She shows us our rooms-- a spacious living room, bedroom and gigantic bathroom with cement tile floors and fluorescent lights on the walls. Air conditioned, thank God. Cuba in summer is no joke. Then she sits next to my bed and does the intake interview. She says the on call doctor would have come by as well, but they've decided to let me sleep. Over and over, everyone tells me I'm home, that I'm among family now, that I'll be cared for. Estas en tu casa, says Lula, as she gets up to go.
May 31. Awake at dawn. Bird song fills the air and I get up and go to the door to get my first glimpse of CIREN by daylight. There are trees everywhere: palms, banyans, almonds, flamboyanes, a small pomegranate, and lush, brightly colored shrubs. Our house has five bedroom and a dining area. Lula has said to call her when I wake up so she can introduce me to the other staff. Nurses work one day on and two days off. She also introduces me to the cook and the woman who will be cleaning our rooms. Right now there are only two other patients in our house—one Cuban and one Venezuelan. A Haitian woman will be coming in a few days. Lula and the nurse just coming on duty look at my power chair and agree I won't be needing it except for the longest transfers. I say I'll use it to explore the neighborhood. In chorus they say-- at the beginning. Lula says firmly, you won't need it after that. You can count on giving it away or selling it. I can't imagine a nurse in a US hospital making a promise like that. It's all about liability and caution. I try to explain this to Lula. She says, well if I'm wrong it will be a pity, but I won't be. Your quality of life will get better. You'll see. We have a whole cemetery of canes and chairs.
Lula, the new nurse Barbara, and the cook confer about my allergies and decide I should eat my sardines until I speak with the dietitian. Trying to get me yogurt and boniato (Cuban sweet potato) before there's been paperwork will involve “tramites.” I have sardines and fresh tomatoes. Then Leah and I go for a walk to buy fresh produce and explore. We end up getting pineapple slices and cucumbers. For lunch, they've made me rice and grilled chicken, and a tomato and cucumber salad. It's delicious. I don't at all mind the prospect of daily chicken and rice.
That's when we meet Robney and his mother Teresa, the Venezuelans. I say hello and we exchange basic data. They are finishing their second 28 day cycle You've landed in the best there is, Teresa says. Robney says, in one month you'll be walking. I smile and say I hope so. No, he says. It's your decision. We're the ones who do the work. His speech is hesitant, as if he needs to search for words. I saw him earlier, walking slowly along the side of the street with a young woman. His right arm is in some kind of splint. His mother turns to us and says. Three years ago he couldn't walk or talk. My eyes widen. Robney was in a car accident and had a hematoma, bleeding in his brain. They came here and he was properly diagnosed and got surgery. Now they're back for rehab. Thanks to our president Chavez, Teresa says. He put it into the constitution that health is a right. They can't take it sway from us now unless they have another coup and run off with the whole constitution. He made an agreement with Cuba: oil for health care. All of this is free for us.
June 2, 2009
It's dawn in Cuba, the beginning of my first full day of testing at the International Center for Neurological Restoration. Ever since our arrival, late Saturday night, we've been immersed in generosity and kindness. Everyone tells me I'm in good hands now, that I'll be taken care of, that they are here to help. Five people meet us at the airport-- two men from the Ministry of Health, a male nurse, a driver and Rosa Maria, the representative from CIREN's International Relations office. Rosa Maria waits at the bottom of the ramp, beaming welcome, walks us through customs and money exchange, and tells me the director of CIREN has told her to take very good care of me.
After a lot of hilarity and improvisation, five people, two wheelchairs and nine pieces of luggage are wedged into a small van and we drive through the night to Neuro Villa, the complex that houses patients from two of CIREN's five clinics. Each house has five or six patients and the person each of us has brought along to help with basic attendant care. We've been assigned one of the best rooms-- a small suite with a bedroom, living room and immense bathroom. And waiting there is Lula, radiating warmth and ready for a preliminary intake interview at 1 am. She says the on call doctor would have come by as well, but they decided to let us sleep. When he does come, the next morning, he asks repeatedly if we have any problems he can solve.
The first co-patients we meet are Robny and his mother Teresa, here from Venezuela. Six years ago Robny was in a serious car accident, with a skull fracture and hematoma. He was in a coma for 18 days. Three years ago, when he first came here, he couldn't speak or walk. Last night at dinner he told us he'd walked 6.2 kilometers at the gym that afternoon. “Paso por paso se llega a Roma,” he tells us. Step by step you get to Rome. When we meet, he looks me over and says one month. In one month
you'll be walking. Thank you. I hope so, I say, smiling. No, he says. It's not with me. It's your decision. You have to work. We're the ones who do it.
The nurses are equally adamant. Lula and Barbara, the new nurse coming on duty, are looking my wheelchair over. They agree I won't need it except for the longest trips. I say, and for getting around the neighborhood. In chorus they respond—At the beginning. After that you'll be walking. Lula says, you'll be giving it away soon or selling it, but you won't be using it. I'm a little shocked. No nurse in a US hospital would say something like that. What with liability and the fear of offering “false hope, “ every word about outcomes is cautiously framed. I tell this to Lula. I don't mind being wrong, she says. If I am, it'll be a pity, but I'm not. We have a whole graveyard of canes and chairs, equipment people leave here.
Over lunch, Teresa says over and over, we're here because of our president Hugo Chavez. He wrote the right to health care into the constitution. They'll have to have a coup and run off with the whole constitution to take it away from us now. Under agreements between the Cuban and Venezuelan governments, Venezuelans come here with all expenses paid. Cuba exchanges medical care for oil. Rodney had brain surgery three years ago. This time he's been at CIREN for two months and has another month to go. From time to time he bursts into song, romantic Venezuelan love songs in a rich tenor voice. He is relearning to read, and then plans to study music.
Venezuelans make up the largest nationality of foreign patients at CIREN, which has seen 40,000 people from 84 countries since its establishment by Fidel Castro in 1989. 22,000 have been Cubans. At our orientation for new patients we meet two more Venezuelans, including an indigenous man from Ciudad Bolivar, and an Angolan woman whose son can neither hear nor speak as an aftermath of malaria. She took him, she says, to a military hospital in Angola, and a Cuban doctor names Raul told her to apply to CIREN. The second Venezuelan, the talkative mother of a fifteen year old, says doctors in her country told her the girl would always use a catheter and never walk. But when Cuban doctors evaluated her they said she didn't need the catheter and had an 80% chance of walking, so here she is. The woman also tells us about Carolina, whom the staff remember, a quadraplegic woman who was here for two years and now walks, using only a brace from the knee down on one leg.
Last night we received a visit from Maria Concha Morales, Mary Conchy, as she's called, a doctor and professor of traditional medicine at the Policlinico Plaza in Havana. She and her friend, a medical researcher, came to collect a suitcase of donated medicine and books. Within minutes she's read my pulse, begun working pressure points on my body, and is teaching my helper Leah how to do Tuina massage one my back until the skin can be easily lifted. She has also offered to set up Reiki training for us both, saying it's the most fundamental level of healing work because it draws on my own energy. It's an agreement with myself, not with an outside force. All the rest, herbs, flowers, medicine, will work much better. Leah and I must become Reiki sisters. How's Sunday?
She also presses points to relieve an attack of my sniffing tic, and arranges to get us a complete alternative emergency medicine course on my flash drive. She lights up when she sees that we've brought her a 2006 Physician's Desk Refernce. “Que maravilla! Now, this is a gift!,” she says. “For this, she says with a grin, we'll teach you a course every week!” I ask her about chronic fatigue, how they treat it. For us, she says, chronic fatigue is from not wanting to be here and now. Epilepsy is wind in the liver. How do I sleep? Terribly, I say, and she says sleep is the most important neuro-restorative there is. We have to take care of that yesterday! Your closet full of pills won't do you any good without sleep. Slow deep breathing, the pressure points for insomnia and the back massage from Leah. That's the homework.
When I mention my power chair, how they tell me I won't be needing it she asks me have I read Deepak Chopra. You have to want this for yourself. You have to imagine it or you won't get it. I tell her I've done that for years. Yes, she says, up here-- touching her forehead. But you have to do it here—from your heart. I tell her about Rodney's long walk the day before, how it occurred to me for the first time, after hearing him, that I could hike again. I told her about my favorite trail in Redwood Park, in the Oakland hills, and how much I loved it, and she lit up.
Her visit has made me relax about all the allopathic medicine in store for me. The epileptologist who passed by yesterday seemed set on giving me drugs. He will be the head of my personal team of five or six practitioners. But after listening to my history, he seems willing to just recommend meds. This morning I will have a blood drawn for a whole range of tests, an EEG, a neurophysiological evaluation and a psychology evaluation. This will be day one of a full week of tests. On Saturday they'll unveil my personalized plan.
Before I left Berkeley I decorated my wheelchair with my photograph, and brought a bag of rhinestones to glue on every available surface. I can't do that now, and I'm removing the photo today. A year ago I wrote that my wheelchair was an exoskeleton. Yesterday it became a bridge that I will cross and leave behind.
Day One: June 2, 2009
The first day of testing starts with an auditory test that measures how long it takes sound to travel from my outer ear through the various stages to my brain, and a nerve test that measures the passage of sensation up my arm—a sensation like an electric pulse that is unpleasant on the left side and painful on the right. Then the EEG, and home for lunch. I tell Lula I've never had these tests, how everything in the US is measure out in the tiniest increments, how every single thing has to be justified. I end up telling her about the abusive ambulance crew that mistreated me so outrageously just before I left. She says she went to Chile once with a patient. She said they had everything, things Cuba lacks, but the nurses would give patients medicine and say maybe three words to them. “The most important part is this,” says, gesturing back and forth between us-- the human relationship.
She has asked me to bring the power chair because the clinic we're going to has big ramps and it will save her having to push me uphill. But don't identify with the chair, she says, it doesn't belong to you. It's just borrowed. I tell her what I wrote about it being a bridge. Good, she says—write it down. I tell her how much difference it made when I got it and she says she understands that it played an important part in my life, but that was a stage, and it's over.
We also talk about shortages. The bathroom at the clinic has no toilet paper or soap. When I tell her she shrugs, then goes and gets me a small piece of TP from an office. Later when I'm being amazed about all I'm getting, she says but we lack a lot of things, almost everything. I say I know. She says yes, but reading it is one thing-- now you're living it. Like soap and toilet paper, I say. We talk about the intense alienation of the US, how a lot of the time people don't know their neighbors or make the kind of commitments to one another that are the fabric of life here. She says, we don't have things, but we have ganas—the will—and that goes a long way. In the US you have all kinds of things, but no ganas.
So Leah and I learn to use a hose instead of toilet paper and soak up the ganas everyone has to be of help to each other and to us.
June 4, 2009
After the morning tests, Leah and I head out with Gabriel the taxi driver to run some solidarity errands. First stop. ACLIFIM, the national office of the organization of people with physical disabilities, where we meet Ana, with whom I corresponded. We're shown into a room whose walls are covered with gorgeous, brilliantly colored paintings, the work, Ana tells us, of a quadraplegic man who painted with a brush held in his teeth. Not knowing exactly where to start, I ask about disabled artists. Oh., yes, she says, we have an annual festival. It begins at the local level and then artists compete for places in the provincial, regional and national festivals. This year's event was just last month.
The Cuban constitution guarantees full equality to all people, so there is no equivalent to the ADA, no law specifically made to guarantee the legal rights of the disabled. ACLIFIM steps in to see to it that the policies are carried out. For example, every Cuban has the right to a free education all the way through graduate school, but there is still individual prejudice, which can create administrative barriers. ACLIFIM intervenes in such cases. They also do public education, working to bring popular consciousness into line with government policy. Disabled people are also guaranteed the right to work. Ana tells us there is zero unemployment for any disabled person who wants to work. If a disabled person trains in a particular field, and there is a place near them where that kind of work is done, if there is no job available, one will be created for them. This is when I cry.
Almost all disabled children are mainstreamed. There are two special ed schools, but these are seen as transitional programs, with as many children as are able moving into their local public schools. For children in other areas of the country for whom the general classroom will not work, a traveling teacher comes to the home to do instruction, but takes the child to the local school a couple of times a week to make friends and develop social skills.
I show Ana the materials I have brought from Axis Dance Company and Sins Invalid, whose work centers on disability and sexuality. She is thrilled and starts talking about organizing an international disability and dance festival. They haven't ever invited foreigners before.
I ask her what are the biggest problems they face. Access, she says, is number one. Streets, buildings, transportation are not accessible, and though there are plans to change this, the blockade, with its resulting shortage of material goods and overall economic impact, makes it very difficult. Cuba has a severe housing shortage, which, combined with the lack of accessible buildings, impacts disabled people especially hard. There is also a major shortage of wheelchairs, although two factories have just been built to start manufacturing them in Cuba.
Later in the day, as we roll along the Malecon, Havana's 8 kilometer waterfront walkway, we pass one man and then another in old manual chairs. Both are missing legs. I'm in my portable manual chair, which I consider pretty uncomfortable compared to my power chair. The first man stares openly at my chair and says “that's good!” I move closer so he can look, and he takes in every detail, stares after me when we move on. The second man cranes his neck, and a few minutes later we see him coming back in our direction to look again. I'm glad I'm not in the power chair. It would be like driving a Rolls
down a muddy track where people struggle with mules. Much too much wealth. I'm glad I'm planning to leave the manual chair here, but I wish I could give it away thousands of times over.
Shortages are not what they were in 1993, the year I came with Global Exchange's Freedom to Travel trip, 175 USers defying the travel ban. At the height of the special period, there were almost no cars on the road, only a few hours a day of electrical power and not enough food. Now there are urban farms everywhere, people look well fed and there is traffic, but the bathrooms at the hospital have neither toilet paper nor soap. I show one of the nurses the hand sanitizer I brought, made from oil of thyme and oregano.
Next stop is CENESEX, the center for sex education. The building is undergoing massive renovations so the woman who comes out to find out what we want meets us in the small outer reception area, with dust and tools all around. Magaly Gonzalez Jimenez is one of the specialists on staff. When she grasps that I'm there to give them things, not ask for them, she is delighted. When I tell her about Sins Invalid, she gets really excited. That's just what we're starting to work on, she says-- you can help us! There is going to be an international sexology conference in January and I should get people to come. And to write for their journal, Sexology and Society. The radio is on in the background and she says, that's one of our staff people. She turns it up so we can hear. The speaker is explaining that when a trans man is in a relationship with a woman, this is a heterosexual relationship. Directed by Mariela Castro, daughter of Raul Castro, CENESEX has pioneered trans liberation work in Cuba, as well as work on lesbian, gay and bisexual liberation, all of which comes under the heading of sexual diversity. In the entryway is a poster of two shaving brushes side by side. “Two of a kind can make a pair,” it says. By the time we leave we are loaded down with educational materials, including a book on transsexuals in Cuba, all of which will be invaluable for my writing. “These are some of our three a.m. hallucinations,” the woman tells us--”things we dream up.” They include pamphlets on STD/HIV prevention specifically written for different populations: adolescents, medical students, cross-dressing men known here as transvesti. We leave with an appointment for July and several copies of their journal.
On the way home we stop for more phone cards, and a bottle of hot sauce because the food at CIREN is dreadful. No one can tell me why there's no seasoning on the daily chicken. We also picked up some ripe tomatoes and limes. Tonight's chicken will be much more flavorful.
June 4, 2009
Day three. So far I have had a full panel of blood tests, tests to determine how well sound travels from my ear to my brain, and sensation from my wrist to my elbow to my brain, an EEG, a neuropsych/psychology evaluation, a series of tests to establish a baseline in terms of my motor function, including a lot of measurements of my legs and arms—an intriguing combination of high and low tech—, a dental check up and today a nearly two hour holistic medicine evaluation. Tomorrow I'll an MRI and some x-rays and possibly a psychiatric evaluation, which is always included for epileptics.
The dentist talked to me about my tooth grinding, explaining that there's a vicious circle of tight jaw muscles and tooth grinding that can be interrupted by a combination of wearing a tooth guard to stop the signal to the brain created by contact between my teeth, and by practicing consciousness of the habit and deciding to stop. She also recommended using a muscle relaxant at times of stress, to interrupt the cycle from the jaw-muscle end. So they'll be making me a mouth guard!
The holistic doctor talked about life lessons, how every circumstance offers opportunities to learn what we're supposed to—how to live. He said, “It isn't a matter of intensity—we should live as intensely as we are able to support. It's about balance. The sun is more intense than we can imagine. It lights up the whole solar system and supports all life, but it's in balance.” His perspective of Chonic Fatigue was fascinating. He said fatigue was a symptom not an illness, with many possible causes, and that it was dangerous to treat adrenal fatigue by itself, that often this involved stimulating the adrenals when the underlying strength to support it wasn't there, and this could make things much worse. He said I had excess liver chi constitutionally, which often leads to weak kidneys and pancreas, and that from his point of view the pancreas was the central issue. My blood work shows somewhat elevated sugar, but he was speaking of the pancreas in all its functions-- immune, endocrine, exocrine and digestive. Although his work is usually limited to supporting the neurological rehab, he said that in my case, for love of my father no doubt, he'll work with me to create a plan of action for the whole complex of other problems I have. Diabetes, he says, is associated with over-worry. That will be the emotional aspect of the work. For all of us, he tells me, it's about learning to live, learning the art of living in balance.
June 8, 2009
Well the hot sauce was a disaster because I broke out in hives, had to get a shot of benadryl and was groggy for the rest of the day. That was Friday. On Saturday it happened again, this time with tomatoes. But with the help of homeopathic apis, a remedy made from bee sting, I managed to avoid more than a small dose of antihistamines, and we were able to follow through on our plans for the day.
Vega is an electrical engineer who does a little work as a driver on the side, and my friend Karen has known him and his family for years. Silent at first, as he drives us across the city to the neighborhood of Santo Suarez, he begins a running commentary on the neighborhoods we pass through, until we pull up in front of the home of my father's close friends and colleagues, Daisy and Miguel. It's Miguel's mother's 90th birthday and there will be cake. Daisy's mother greets us with kisses and ushers us into a pleasant sitting room with high ceilings. Daisy emerges, her open face lit up with pleasure. Leda will be here soon, she says. Daisy and Leda have known my parents for 33 years, working closely with my father throughout the years. Miguel is a doctor. I tell them they are like cousins I've heard of all my life but never met. They beam at me, say that my father is like their father, too. I agree to share him, and they start telling stories from the various visits over the years. When I have explained my limited diet, Daisy proposes making me tostones and malanga—fried plantain and a boiled starchy root that I love. With the can of sardines I keep in my backpack, that will be a lovely meal. Daisy says I have to count on them more. When Leda and her husband Manolo arrive, we watch the short video message my father has sent, at my urging. They all melt at the sight and sound of him.
We talk about the health care system. CIREN is a specialist center, with nearly half the clientele coming from other countries, and is better resourced than some. There are hospitals from the 1940s still in operation. While the quality of the doctors and nurses is excellent across the board, that of support staff varies, and while some house patients three to a room, others have dormitory style rooms with up to 25. Recently their grandchild Beatriz suffered a terrible accident, colliding with her grandfather while he carried a pot of boiling water. At the burn center where they took her, there was another child with 2nd and 3rd degree burns over 60% of her body. Miguel says, in any hospital anywhere, they'll tell you you can't save a child burned like that, you ease the pain and let them go. The doctors debated what to do but fought hard for the little girl and were able to save her. But then, Miguel says, she'll need many operations, plastic surgeries, and where are the resources? Nevertheless, the doctors are amazing. While we're talking young Beatriz, four years old, comes home , still bandaged over much of her head. She was in the hospital for quite a while and is not used to company yet.
I ask about the disparities between health care centers. It's complex, they say. There are hospitals that were here at the time of the Revolution, and many more were built in the 60s---but we lack the resources to maintain them. The government wants to keep health care completely equitable, so they repair each one a little, when it would make more sense to pick a few strategically located ones and bring them up to the standard we want, and then do a few more the next year, and soon, instead of having them all be equally run down. Issues of central planning, bureaucracy, and over-literal interpretation of equality Then there are other issues that arose during the years of the Special Period. The Revolution raised people's aspirations, and then came a time of tremendous hardship, when their incomes couldn't begin to meet their goals. Some professionals left to work in other countries, in Latin America, Spain, the United States. The special period saw a resurgence of what Daisy calls anti-values, including the reappearance of prostitution, shady dealings connected to the double currency, opportunistic behaviors of various kinds, begging. PS-- she spells it Daysi, but I can't retype it right now.
June 11. 2009
My physical therapist is Jorge, a young father of two with eleven years experience and a passion for excellence. He's blown away by the dvd I lend him of Axis Dance Company—not just the beauty and power—what has him psyched is what it could mean for his patients if they could learn to flip a fallen chair into the upright position the way Rodney Bell does. Paraplegics who don't leave their homes because of the impassible streets who might brave the broken pavement if they knew they could right themselves from a fall. He takes it to the director who misunderstands his excitement and thinks Axis could be great for a disabled kid's school—seeing inspiration, not new rehab potential. O he takes it to one of the neurologists, starts talking it up to the other P Ts. You have to work intelligently at things like this, he says—plant seeds.
Jorge and I talk and work my body's weaknesses into strengths for five hours a day. I hear about his four year stint as a personal PT in a mansion in Chile with a millionaire family who had to be taught that they didn't own him. Which he apparently did on day one when he refused to work longer than his contracted work day.
June 13, 2009
I've been too busy to write and frustrated by the lack of access to my blog, and am running low on wifi time in the lobby of the incredibly over the top hotel; Melia Havana, so just a quick update. I've had a lot more tests and more to come. They are determined to understand everything about my pain. The MRI machine is finally fixed and I get that Monday morning, plus x-rays to check my spine for arthritis and other organic changes, and an ultrasound of my shoulder. The physiatrist diagnosed fybromyalgia and prescribed magnetic and electrical treatments. I am SO well cared for here! I adore my PT, who gives the most amazing massages to ease pain in my pelvis and upper back. We alternate working out with weights, on a bike, doing leg lifts, etc, with heat lamp treatments. I started outon Tuesday walking 16 meters and yesterday did 50. I also started B12 shots for the neuropathy (nerve pain) which seem to help. Jorge says we'll reach our goal, to have me dancing again when I leave.
There's so much more to tell, but I have to protect my hands and not type too much-- and have tech issues with my dictation program, which i'll try to crack tonight.
Today I sang Kalinka with the brain injured 18 year old girl fromt he Ukraine who gets fine motor and cognitive therapy at the same time as me. It was a deeply lovely moment, as she often spaces out and is unresponsive.
Til soon.
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BTW Isabel wrote that she's been in touch with you and hopes to figure out a way to connect while you're there. I look forward to reading more when you're back in the hotel lobby. Take good care. A la proxima.