A Sit Down – with Joyce Almaguer – Reisdorf
A Sit Down with – Joyce Almaguer-Reisdorf
For the benefit of our readers, can you explain how you are involved in Developmental Optometry?
My name is Joyce. I’m a vision therapy graduate of Dr. Marcia Moore, of the Bellaire Family Eyecare. I took VT for about 6 months in 2010.
I’m also a vision therapy parent — my son just graduated from Dr. Ann Voss at the same location. He attended VT for a little over a year.
As part of a larger blog entry on January 24, 2007, you wrote – “woke up feeling bad. I thought I had some kind of weird migraine. My head hurt and I couldn’t see well, and slept, slept, and slept. I begin to lose words.” – What was happening?
Well, I didn’t know it at the time, but in my left temporal lobe I had an ateriovenous malformation, called AVM for short. An AVM is a congenital, spaghetti-like tangle of incorrectly-formed blood vessels. You can have an AVM anywhere, but they are most common in the brain and spine.
Sometimes an AVM can be detected early, but in their worst case they rupture due to the forces of your blood whizzing through the tangle day in and day out. When that occurs, blood begins to flood your brain cells. As the blood is toxic to your brain cells, they begin to die. The pressure from the pool of blood — sometimes doctors call it a clot — can damage the surrounding brain cells as they get stretched or squeezed by the growing pool of blood.
One Monday afternoon in 2007, as I napped with one of my young children, my AVM ruptured.
At 29 years old, I was having a stroke.
Your initial symptoms began on a Monday, and worsened as the days progressed. Can you describe them?
That Monday morning I took my 23-month old twins and mother to a playground. The weather was beautiful–sunny and only a little cool. My husband, Matt, had just flown to California for a business meeting; he was due back Thursday.
At noon we ate lunch, and I started to get the kids to sleep for an afternoon nap. David wouldn’t settle, and I was getting tired, so I lay down next to him. A short time later I woke up, and I felt like I couldn’t quite focus. Everything was soft and fuzzy, like I was underwater. I wondered if something was wrong with my contacts–I remembered having an eye infection that affected my vision in a similar way. I realized my head hurt. And I was sleepy.
I took my contacts out; my vision remained fuzzy. My mother took my children, and I began calling around. What’s this all about? I wondered. I called my eye doctor’s office about a potential infection, but the staff wasn’t very helpful. I called my primary care physician, but the woman answering the phone told me they couldn’t help unless I came in–and I couldn’t really see well enough to drive. I even called a chiropractor I had just seen on Friday. Could this have been related to the adjustment? The chiropractor answered no, and cheerfully told me to feel better soon. I was very sleepy after all of this, so I decided to just go back to bed. Motherhood was starting to wear me out, I figured.
I don’t remember very much, but I remember being able to see well enough that I could tap out little e-mails to my husband on my PDA. I told him something was going on with my eyes, and I couldn’t understand it. Then I slept some more.
On Tuesday I felt worse. I felt like I had something like a sinus headache, but with an awful pressure from behind my eyes. Is this what a migraine is? I thought. I couldn’t stand looking at the computer long enough to even find out. I called my primary doctor again, but the same lady answered the phone. I could barely understand her, and I didn’t know how to tell her how I felt. In fact, it was difficult to say much of anything at all. I felt like the words were just . . . on the tip . . . of my tongue.
I was confused, and for a moment scared . . . but mostly so tired. I tapped out another e-mail to my husband, and went to bed.
In the late afternoon, my husband appeared. Everything was going to be okay . . . after I took another nap.
Wednesday morning, I was finally in the car on my way to the doctor. I squinted. It was so bright outside in the big world. And so fuzzy. When we started to move, I grabbed the arm rest. I suddenly felt like I was in a roller coaster–and I *hate* roller coasters. Whoa! down the driveway and our little street. Whoa! around the corner. I felt the g’s like a fighter pilot, all .05 of them. Whoa! down Richmond Street and Whoa-hoa! over those bumps! I sat rigid in my seat, staring ahead and hoping I wouldn’t throw up. What kind of headache was this?!
At the doctors’ office, I sat on the examination table, gripping the edge because I felt like I might fall off. I explained to two doctors, the regular doctor and a new hire, how I felt: something like major sinus pressure, sensitivity to light, vision like I was looking through water. I felt off-kilter. And I just . . . felt like . . . I had to search for words . . . even though I was communicating well enough in the exam room. “Is this a migraine or something?” I asked the doctors. The doctors agreed to send me to a neurologist in the Texas Medical Center for further evaluation.
The Texas Medical Center is the largest medical center in the world. It is a city within a city, with tall skyscrapers full of doctors’ offices, universities, hospitals, and tall parking garages for all the visitors. Tall, skinny, parking garages, with ramps that go around, and around, and around, and if you’re already dizzy, when you go around, and around, and around, you pretty much might feel like you’re going to die. Especially when you find out that the neurologist actually wants to see you tomorrow and your primary doctor says it’s okay, and especially when you feel helpless and you really just want to be in your dark, quiet, still little bedroom, asleep–but you can’t until your first go back down around, around, around the ramps you just came up. (That parking garage still gives me the willies!)
At home, I told my mom she could go back to San Antonio. Matt was home, and I was going to see the doctor, eventually. Then I think I slept some more.
In the evening I made dinner. It was worst ever. Nothing tasted right, and I kept making mistakes. I tried to be busy around the kitchen but felt . . . a little . . . slow. I smiled and told my mother goodbye. I was confused, but wanted to everything to be normal. Everything was beautiful. A little weird at the moment, but beautiful. I just needed to sleep.
Unfortunately, you were not able to see a doctor until Thursday morning. What occurred during that visit?
Matt (pictured below) was very worried and tired of waiting, and by Thursday morning he wanted to take me directly to the ER.
The ER was empty and quiet, but it had just been cleaned and the smell of disinfectants made my stomach turn. “I’m gonna stand over here,” I apologetically told the nurse at the desk. “It . . . stinks.” I leaned against the wall, and then slid down to a squat, where I felt a little more stable. The lights, the hospital sounds, that chemical smell–it was all so much.
It wasn’t long before the triage nurse called me back. I explained the fuzzy vision, the dizziness, the fatigue, the weird sinus headache that wouldn’t completely go away, the sense that I was searching for words. She sent me out for a CT scan.
Very soon I sat in a bed of the ER. A doctor leaned against the counter at the foot of the bed. She crossed her arms. “Do you know,” she started, “that you have a clot the size of a small lime in your brain?” “How did it GET there?” I blurted.
“We’ll find out,” she answered. “You weren’t kidding when you said you had a headache, were you?”
Matt called my parents — they needed to come back.
What was the outcome of those doctor visits?
After a while I was being pumped up with anti-seizure meds and getting prepped for a cerebral angiogram, a special kind of x-ray to visualize the blood vessels. The doctors would be able to see why my brain was bleeding. As the angiogram team worked I remember listening to the sound of everyone working together, the catheter tickling its way inside, and the silver sparkle of fireworks that burst in my eyes every time they pushed a bolus of contrasting media through. The contrast media allowed the AVM to glow. It was small as AVMs go, but it sure had made a mess.
I was wheeled to the Neuro ICU unit, and the rest of the day seemed to pass quickly.
It was dark when a neurosurgeon came in to see me. He explained the discovery of the AVM, and what he’d do, and drew on a white board that I couldn’t quite see with or without my glasses. He would remove the AVM, and then clip off the scrambled blood vessels. I could see a general shape of my brain, and a little scribble somewhere in the middle. As he spoke I thought of Bernoulli’s Principle. Flow. Friction. Vessel weakness over time. The blood vessel rupture. I squinted at the picture again. Was the scribble drawn not far from my ear? I tried to formulate a question but the words couldn’t quite come. Think, think! I settled for a verbal shorthand. “Wernicke’s? Okay?” Broca’s was near there, too.
“There is a chance,” the doctor began, “that you will wake up and be unable to speak, or process the language you hear.” I thought about my babies. I thought about my husband. Holy moly. “And there is a small chance you could die.” Oh, good grief.
I was thinking as fast as I could. But where were the words? Think! I went back to verbal shorthand. “But, the cells, you clip . . . hypoxic?” I was getting dizzy but tried to draw a picture with my fingers. “No,” he had responded back, “It won’t matter.” But . . . won’t matter? I didn’t understand until later that those neurons were already damaged–they had basically drowned in my blood.
The doctor came to my bedside, so I could see him. He gave me two options — I could wait several months for the blood to clear and begin treatment then, or he could operate as soon as tomorrow. Most doctors would ask me to wait — the clot would make it difficult to see the tiny tangle of blood vessels that made up AVM — but this surgeon was confident he could do it tomorrow.
I had babies to take care of. They were so little. I didn’t have time for a blood clot to stabilize, then dissolve whenever and however it felt like. I didn’t have time to worry about it coming back.
I looked at Matt, then back at the doctor. “Give us a few minutes?”
I blinked back tears. The doctor walked out, and the nurse walked in. “Do you know,” I told her, “How much we read before we bought our Subaru? And now? We just say yes? Is he good?” What if he blew it? The nurse was new to the unit. “I’ll tell you what I find out,” she said, and stepped outside. After a while she came back in. “They say he’s very good,” she reported back. “Everybody likes him.” Nurses know everything. If they thought he was good, then he was good.
We told her he could come back in — we were ready.
Was your surgery successful?
The surgery was supposed to last a few hours, but it wound up taking more than ten. There was so much blood, and the AVM was somewhere in the middle of it. But they performed angiograms during the surgery, and several after, and we’re confident they got it. That’s important, because otherwise an AVM can grow back!
What was life like in the months following surgery?
Boy, it was hard, and we were all totally unprepared for it.
I needed to sleep a lot, and sometimes I would just be caught unaware by it–I just needed to shut down right then and there. And everything still seemed so offensive and big–daylight, computer screens, smells, sounds–even the ones coming from my own house.
Matt’s housework and the pitter-patter of my children’s feet became a herd of running buffalo shaking me to my bones, and the scritch-scratch of forks on a stoneware plate during dinner became the scraping and clanging of a crowded New York diner during lunch hour. We began eating from paper plates, and then graduated to plastic ones when my ears stopped hurting so much. The occasional rumble of trucks down the street–we had moved to the central city right before the stroke–reached me to my core and took away any previous train of thought. Every now and then I’d make my appearance to the people in the living room, and then creep back downstairs to the bedroom and hope they’d all be quieter.
I spent much of my time in the bedroom, which was dark and cool and relatively quiet. When I began to emerge outside, I often shielded my eyes with sunglasses and hat. Because our monitor felt too big, bright, and busy, Matt bought me a laptop which I could use for short periods of time, with the brightness turned down way low.
It took forever, but sometimes it was easier to write than try to talk, because writing gave me more time to figure out what I wanted to say. Words weren’t always at the ready when I needed them, and even the most familiar ones sounded odd:
“Can I have, uh . . . this?” (I was making an ASL sign.) “Two pieces of bread and something in the middle?”
“Yeah! Sandwich? Wait, did I say that right? Sand . . .wich?”
“Yes, sandwich. You want some meat inside? I have turkey.”
“No, no, no! Uh . . . peanut butter!”
Writing also meant that I had time to read the responses. Distractions and a slower processing speed made me feel like everyone around me was speaking at 90 minutes a minute. I struggled to understand phone messages, people at stores, or even my family. But I could read at my pace–slowly, and with lots of breaks, because reading itself as difficult.
As I recovered I found I could comfortably tolerate and do a little bit more, but then at some point I would find myself nauseous. To cope I went through bags and bags of ginger candy, and they seemed to help. I wore special earmuffs and earplugs on occasion, but after an exciting day–exciting being relative, here–everything still sounded so loud and ugly and distracting. An afternoon nap, or at least some resting with the TV on mute and the brightness turned down low, helped me recharge so I could make it through the evening.
And then at night, after spending the day trying to do some of the normal day-to-day things most people do without a thought, I would lie down on my bed and feel a boat-like sway and pitch, or sometimes sense of spinning in my head, until my brain and body both finally felt to rest.
Following your surgery, can you describe any changes you noticed in your visual system?
Immediately after the AVM resection, the fuzzy, underwater character of my vision noted the previous week started to go away. But when I was finally allowed to stand up and shuffle to the window, I tried to look at the cars parked across the street and couldn’t. Everything seemed distorted, too far and too close at the same time. I looked away, not realizing that my inability to take in the view had just signaled a serious problem.
Even what I caught in my periphery–while walking over a bridge as cars passed underneath, or while sitting in the passenger seat and watching out for a car in the lane to the right–seemed too close and too far at the same time, and I found myself often woozy at the perspective or startled at the movements.
As time passed everything became easier, but not easy. I couldn’t look inside even small aquariums without feeling woozy, and sitting as a passenger on a ride down the freeway was a largely failed practice in Zen meditation–the cars were so startling. They seemed to come out of nowhere, and felt so close. So I ate my ginger, tried to get through whatever I had to get through, and promised myself a nap when I got home.
And I cannot stress how the world just felt so big–there was just so much to look at. Driving was hard–because I had to look around. Shopping was hard–because I had to look around. The library was hard–because I had to look around. Making sense of a six-foot shelf full of soup or whatever at the grocery store just about blew my mind. Even looking around my house was challenging, especially if there was anything on the floor or counters or table. If I had to look for something, I felt the stress of scanning, scanning, and hated feeling nauseous in my own little kitchen or living room. I craved a room with nothing in it, in the middle of the country with nothing to see but prairie and sky.
I shopped by remembering where everything was. When I shopped I tried to look downward at nothing much at all, and then when I approximated the place I needed to be, I would focus on the one thing. When I checked out, again I would look straight ahead, or down at the credit card machine. Trying to keep track of whether or not they charged me correctly for those pomegranates was beyond my reach. When riding in the car, I never looked around. I just looked straight ahead, focusing on the horizon, trying to breathe or sing, and focus on my destination.
My sudden distaste Houston’s big-city visual clutter–cars, signs, buildings, trees, art, people!–made me a little sad. Just a few months before the brain bleed I bought a house in town so we could walk and bike to the store, parks, museums — and now I couldn’t stand it. It was. All. Too. Much. I didn’t really get to appreciate the tree-lined streets or cute little bungalows. I was mostly looking down or straight ahead, trying to zone out and not throw up or trip. Instead of looking both ways to cross the street — moving my head back and forth like that was hard! — I just waited for Matt to take me across.
I also became sensitive to colors and patterns. I still hate Target. Red and white and bright, with gigantic aisles of shampoo or whatever . . . bleeeech. I’ll go, but I’m not really happy about it. I remember the yuck.
Aside from vision, what other treatments had you tried to remedy your symptoms?
After feeling bad for a few months, I asked my primary doctor for help and was sent to TIRR (The Institute for Rehabilitation and Research) after an intense evaluation. I was placed in the Challenge program. The point of Challenge was primarily to help a high-functioning brain-injury patient adjust to their new “normal” as a post-ABI (acquired brain injury) patient. I appreciated the help, but felt like I could still improve–I just needed the right kind of help.
After seeing several different doctors in an effort to feel better, I was finally referred to a sensory clinic in the medical center which focused on inequalities in the way my ears contributed to my sense of balance. But when the therapist there gave me a sheet of simple stick-figure exercises and told me I was fine and wouldn’t need to come back, I decided I needed to keep looking–I knew I needed more help than that!
When you were first examined by Dr. Marcia Moore at Bellaire Family Eyecare, what diagnosis were you given?
Dr. Moore was so nice, and after years of feeling like stressed-out junk I was so excited when she told me she might be able to help! I was evaluated at the learning center and these were my diagnoses:
– Convergence Insufficiency
– Binocular Dysfunction/Instability
– Reduced Stereopsis
– Accommodative Infacility
So, we had some work to do!
Can you describe your experiences in Vision Therapy?
I spent about six months in the therapy program. I attended one-hour sessions weekly, and then worked on exercises during the week. The exercises started off pretty simply, but then got more complicated with the Marsden Ball, Randolph shuffle, and other exercises.
The Marsden Ball is a pretty common exercise, and looks really easy; all you have to do to start is just follow it as it swings back and forth from a fixed point above you. But in my case, at the beginning it was pretty hard to do for very long without feeling yucky. I was pretty impressed with myself when I realized it, and the other exercises, were getting easier and easier to do.
I’ll give you a tip about the Marsden Ball, though: don’t hang it from the ceiling fan, just in case one day your little kids start batting it around like a tether ball and the glass light fixture wiggles loose and shatters the concrete floor, sending glass shards just about everywhere. And don’t hang it from a dinky little hook in the ceiling sheet rock, either, just in case one day your little kids start batting it around like a tether ball and . . . well, you get the idea! Hang it from a good, strong, hook and anchor. You can patch the hole later if you really want to. (Or leave it there to remember your good ol’ Marsden Ball days!)
The in-office sessions were harder than the home exercises. That was fine with me–I wanted to feel better! At the beginning of the therapy course I usually felt pretty tired, and sometimes a little woozy, by the end of the therapy hour. Often I would sit at a friend’s house midway between my house and the office so I could get my wits about myself before going the rest of the way home. (I’m so grateful for those friends!)
One day I got so woozy I must have just about turned green. I had been tossing a ball while wearing these hilarious glasses that distorted my vision a bit. I really learned to appreciate the leather couch in the therapy area–I needed to sit there a little before I faced the big, wide world!
By the end of the therapy program, I was really good at Marsden Ball activities, multitasking, clapping beats out, and “dancing” the Randolph shuffle . . . but the best part was Joyce was coming back!
I gradually found myself doing things that had been so hard to do just months earlier, like reading maps in the car, looking around while Matt drove us all to the beach, hiking, watching IMAX movies at the museum, even riding the bikes that I had considered selling the years before. We took a long vacation to West Texas, about 11 hours away, and I was so happy to be able to enjoy the drive.
Many of your sensory inputs were adversely affected by your brain surgery, and many of them seemed to re-integrate as you progressed in Vision Therapy. Would you agree?
I had basically been living as if I had been dealing a multi-year migraine. Loud restaurants, family parties, and performances drove me nuts, even if I really wanted to be there. The loudness distracted me from my ability to understand conversations, and sometimes my ears literally hurt from the overwhelming roar of even a quaint cafe.
When my eyes’ functioning came together, my aversion to those places got better.
Other Aquired Brain Injury sufferers have discussed the importance of a healthy diet and even supplements following their event. Have you found the same to be true?
You know, nobody talked to me about this until I became a patient at the Bellaire Family Eyecare. I had tried to read a book about nutrition and the brain, but I found it all overwhelming (in part because at the time it was hard to read, period!). As a result I was pretty irregular about supplementing, although I did try to eat a plant-based diet and get as much fruit and veg in as possible. I knew my body needed the extra TLC.
Now my kids and I have a pretty solid routine with some multivitamins, and some other nutrients that we know we tend to be a little low on, like Vitamin D. We also supplement with fish oil, to make sure our nervous system gets lots of good fats.
All of this was going on as your twin children approached their second birthday, which must have been incredibly stressful on you, and those around you. Can you talk a little about how your family managed the stress?
Wow, it was hard. Really hard. My body started to wear down from being nauseous and stressed all the time. I got sick a lot, my allergies went berserk, and I started having all kinds of other weird problems.
We tried to feed my body well, and go places where I knew I could feel comfortable that weren’t too far away. The George Ranch was a godsend–it was quiet and open. The staff there was great, as well. We went to the beach–the motion and sound of the waves would bother me sometimes, but as long as I didn’t pay too much attention to them or sit too close to the water I could appreciate the open vistas, and my kids loved having a place where they could play freely and loudly and know they weren’t driving me nuts. I still crave those places–we just got back from Big Bend Ranch State Park, and it pretty much felt like paradise.
Dealing with the kids was really hard, so for a while we hired someone to help us for at least half the day (and the kids and I slept for much of the afternoon). The costs add up, but that kind of help allowed us to be a little more relaxed, and helped my husband maintain his work schedule.
Following your recovery, you’ve decided to offer support to others who may be walking a similar path. Can you tell us about that?
I’ve just tried to be open about it all. I feel like I wasted some time by not finding VT sooner, and don’t want that to happen to anyone else. I also want people to be able to see what recovery can look like.
I kept a blog for a while (slowly under revision at http://www.reisdorf.org). It’s harder for me to update now that we’ve switched operating systems and stuff, but what’s there has served some people who have found the blog Google. I think it’s really important for parents with young children to share some of their experiences, because even before their brain injury they have a lot to juggle, and the brain injury makes even the little things exponentially harder.
The past couple of years I’ve tried to figure out what I should be doing next, and have been involved in some diverse projects related to sustainability, transportation, and urban planning. I’ve been interested in sustainability for a long time–I have a graduate degree in ecology and evolutionary biology and worked in the nonprofit sector for a while–but transportation became really important to me when driving (and walking, and riding a bike) became so hard. I realized when I was spending so much time bouncing between doctors that we need to design our communities so that everyone can get around safely; right now a lot of people are driving around who shouldn’t because they feel like they don’t have any other option to get to work, run errands, or engage in their community.
I feel really fortunate to be here and want to make sure I’m leaving my community better than I found it. I still haven’t quite figured out how to balance everything out — it’s part of the conundrum of parenthood, I think! — but I’ve been grateful to have already been able to do so much.
Some Closing Thoughts: Special thanks to Joyce for sharing her story. After we completed this interview, Joyce emailed to ask I planned to edit any of her responses. How could I? Her story is amazing just as she tells it! Joyce’s strength and perseverance continues to be just as much of an inspiration today as she was the day we met in the therapy room. Vision Therapy helped to give Joyce her life back, and ensured that she can enjoy every moment with her husband and children. Please join me in wishing Joyce, Matt and their wonder children the absolute best!