Sylvia Brain Bear came into my life around Valentine's Day of 2007, just after I was informed that my newly discovered medical condition required brain surgery. A gift from my husband, I named her Sylvia after the aqueduct of Sylvius. Also called the cerebral aqueduct, it is a narrow passageway in the human brain through which cerebrospinal fluid gently flows as it leaves the ventricles, or "lakes" in my head. Here is Sylvia lounging with Mango on a spring day in May.
Sylvia enjoys being with her friends, discussing important things, championing causes near and dear to her heart (with Boozle Bear and Hydro Angels Bear), and just plain goofing around!
Sylvia's favorite movie quote is from "Christopher Robin" (2018).
Pooh: Christopher Robin, what day is it?
CR: It's today.
Pooh: Oh! My favorite day!
CR: Mine, too. Mine, too.
Pooh: Yesterday, when it was tomorrow, it was too much day for me.
CR: Silly ol' bear!
Sylvia Brain Bear accompanies me on my Hydrocephalus Association Walks, riding in her backpack. You'll be seeing more of her in the days to come, as we prepare together for the 2019 Twin Cities Minnesota Walk on September 21st!
Why do I write about hydrocephalus using lake imagery?
I think it is because here in Minnesota we are literally surrounded by lakes, and many of those lakes are connected to each other by rivers and streams. We see them every day. Most people don't realize that inside our brains there are pockets of fluid connected by channels called aqueducts. The fluid is cerebrospinal fluid, often called CSF. It's filled with nutrients that feed our brains, and at the same time it flushes away waste from our brain cells. This is exactly how we--and all life on earth--use the lake and groundwater around us, to give us necessary nutrients and flush away waste. In hydrocephalus, there is an excess of that normally helpful fluid, CSF, which creates pressure on the brain. The cells that usually assist us in re-absorption of the CSF can't keep up with the production of it, which as far as we know is constant. The pressure prevents the brain from functioning properly, resulting in symptoms like headaches, nausea and vision problems. If caught early enough, permanent brain damage can be prevented. Coincidentally, here in Minnesota and elsewhere in the world we are trying to figure out how to live with an excess of water caused by climate change, cleaning up after severe rains, extreme storms and flooding. The parallel is all around us, all the time.
Why should others know about my condition?
Hydrocephalus, like depression and other illnesses, can seem invisible to us. I am not limping, not wearing a cast, not showing obvious signs of having a medical condition. Yet I do have a daily struggle with memory problems, recurring headaches, and the ever present threat of my brain shunt malfunctioning which is life-threatening. I pay a lot of medical bills. Many of us struggle with depression. Some have other conditions along side their hydrocephalus, like Spina Bifida, seizures and Chiari malformations, that present other hurdles, as well. We want to be accepted and respected by others, and would like others to realize that we may have special needs, but inside we are just like you. There is much more to us than just our medical condition. We want to be treated kindly and compassionately, with respect and dignity.
What advice do I have for others who have this condition?
Don't be afraid to tell others you have hydrocephalus and at the same time don't use hydrocephalus as an excuse to not be your best self. We all need close friends to be able to share our lives with. We need intimacy. Share your hydrocephalus struggles with those with whom you already have a close relationship. Lean on their support. Let yourself be encouraged by their love. Then try new things. Wear a helmet when you do activities during which you may injure your head. Find out what you're good at. Be reasonable about your limitations. It is immensely freeing to not live your life in fear of others finding out about your condition. By the same token, it may not be necessary to tell some of your acquaintances about it. You may or may not want to reveal it to your employer. It depends on your personal situation. Hydrocephalus will not keep you from enjoying an abundant life, but fear will.
For more, read The Lakes In My Head: Paddling An Unexplored Wilderness
Two years ago today, a litter of fluffy orange kittens was born and brought to Feline Rescue, with their feline mother, here in the Twin Cities. My husband, Ken, and I adopted two of the kittens, naming them Mango and Butternut (after the squash--see my previous blog post to find out how we named them). Happy Birthday, Mango and Butternut!
We have had cats in our house for over thirty years, all adopted through shelters. They are wonderful companions, each having his or her own unique personality. Uncoordinated Izzie, motherly Kaci, highly athletic Matthew, we remember them all as individuals. Heidi and Gretchen were tortoiseshell tabby and calico, respectively, and I wrote about their lives with us in my book, The Lakes In My Head: Paddling An Unexplored Wilderness, along with Princess who was the kitten we adopted from a litter of grey tabbies at the animal hospital where I worked. Princess started out athletic and rather aloof, gradually becoming more affectionate as she grew. Her whole litter enjoyed playing in water, a trait uncommon to domestic cats.
Heidi was especially interesting to me, because she started out her life as a little bit moody until we discovered she had bad teeth. Her teeth were slowly disintegrating, a painful process known as feline tooth resorption. She had an anesthetized dental cleaning and examination during which the veterinarian removed all of her painful teeth. Following this, she was a new cat! No longer in pain, she became very affectionate and snuggly.
One of her favorite places to snuggle was curled around my head as I slept. At the time, this was particularly helpful in keeping me warm and comfy. My head was shaved on one side. It got a little chilly at night.
The year before, while enduring excruciating headaches, I'd been diagnosed with a brain condition called decompensated hydrocephalus with aqueductal stenosis. The headaches, it turned out, were due to an excess of cerebrospinal fluid in the ventricles in my brain. When I mentioned this to my friends they all stared at me blankly with a glazed look in their eyes. I had to figure out a way to help them understand what was happening inside my head.
I didn't have to look far. I live in Minnesota the Land of 10,000 Lakes, in Minneapolis the City of Lakes. Here in the Twin Cities we are surrounded by lakes, streams, rivers, and swamps, many of them connected to each other. So, I came up with the description "the lakes in my head" to illustrate how the cerebrospinal fluid in my brain flowed from one ventricle (lake) to another by way of aqueducts (streams) within my brain. Through the third and the fourth ventricles to my spinal column (the Mississippi River) the flow was unhindered, but there was a narrowing of the stream between the second lateral and third ventricles. It was a little bit like having beavers build a dam in your brain. All that restricted fluid created pressure, which caused excruciating headaches.
There is no cure for hydrocephalus, only stop-gap measures to alleviate the pressure. I had surgery to insert a long tube into my brain to drain the fluid to elsewhere in my body. This required that my hair be shaved off on one side of my head. As my body healed from surgery, my hair would gradually grow back, but in the mean time I wore a lot of hats and stocking caps! Thus the pleasure of a live kitty wrap around my head at night.
Heidi and I healed from our surgeries together and became best friends. As she grew older--she lived to be eighteen years old, a ripe old age for a cat--I would curl up around her as she slept on our bed, returning the favor.
So, on this day of wishing Mango and Butternut a Happy Second Birthday, we remember all of our special feline friends and the joy they've given us in our lives. Go hug your cat (or dog!) today and be thankful for their companionship on this planet Earth.
Easter. Easter is on my mind.
I grew up attending a very large Lutheran Christian church. My dad rarely went to church; my mom attended, making sure she was at all our choir events, getting us to Sunday School, driving us to youth gatherings. My brother and I went to summer camp every year, and worked or volunteered at the camp when we were old enough. In confirmation classes we learned about the Bible, God and Jesus.
Yet, though I was immersed in this lifestyle, as I was leaving home for college I had a question that was never answered: Why? Why did Jesus have to die on a cross and then be raised from the dead? Why would a supposedly loving God do that?
In college at Bemidji State University, a public college, I found myself spending a lot of time with my Christian friends. My friends were Baptist, Evangelical Covenant, Catholic, Lutheran, Methodist, Presbyterian, Episcopalian...you name the denomination and I probably had a friend in it! It was my evangelical friends who finally answered my big question. They did it by loving me and welcoming me as I was. They invited me to their events and Bible studies. No pressure. Just welcoming love.
The answer to the question, "Why? Why did Jesus have to die on a cross and then be raised from the dead? Why would God do that to His Son?" became clearer to me as I was reading a book about a missionary--an independent missionary, who felt a calling in his heart, but was not sent out by any particular denomination. He just went. He went to South America, to a tribe of native people who had literally never heard of Jesus. He didn't know their language; he lived with them and learned it. He lived as they lived. Ate what they ate. Got sick when they were sick. He made friends.
One day, he was trying to find a way to explain to them who Jesus is. That's a pretty tough concept to explain with a language he was not born into. He explained it something like this. Looking down at an ant hill busy with activity, he tried to express that he loved these ants, but the ants couldn't know that, because they were ants, not people. He loved them so dearly, but no matter what he tried, they still didn't comprehend who he was or how much he loved them. Finally, he decided to become an ant. He left his human body, took on the exoskeleton of an ant, and crawled into their ant hill. Some of the ants accepted him as their own. Some tried to kill him. In the end, he changed the whole ant colony, and the ants finally knew who he was.
I can't find the book, I don't remember the author, and I don't remember the story in detail, but I do recall that this ant story hit home for some of the people in the tribe*. They understood that God took human form as Jesus, came to us, was loved by many, but hated by some and killed. Yet, because He was God, He rose from the dead, and appeared to those who loved Him many times before going back to His Godly form in the heavens. The one thing everyone who met Jesus could tell was that He loved them, even if He didn't quite agree with what they were doing. He tried to tell them that they need to concentrate on loving each other more.
Well, you know me, so you can guess that the ant story hit home for me, too. It was the frosting on the cake that all my friends had baked for me in leading their lives as Christians. I realized that I was being transformed by the love of Jesus the Messiah. Feeling truly and deeply loved by God, my Creator, filled me with such joy and love for others that I knew I had to share it with everyone.
Easter is always on my mind in some form or other. Jesus rose from the dead, Jesus is alive, and Jesus is coming back! Until He does, we need--no, want--to share His love. With everyone. Share some love today.
* The book is Bruchko, by Bruce Olson
Hydro-what? This is how many people react when I talk to them about the condition I have. Or they give me a “Um...I'm embarrassed to say that I have no idea what that is” look. The condition is not visible to most people when they look at me, and it's not frequently spoken of in the news or among your co-workers. I was born with hydrocephalus, or too much cerebrospinal fluid (CSF) trapped in my brain. Though I was born with it, my body was able somehow to compensate for it until I received a traumatic brain injury at the age of fory-five years.
Last year I had the pleasure of participating “virtually” in the 2018 Hydrocephalus Association National Conference in Los Angeles, California. By logging in to a computer I was able to be in Los Angeles, listening and viewing speakers talking about many aspects of hydro-what-alus. What particularly interested me was all the research being done and how much financial backing the Hydrocephalus Association generously gives out to the researchers who apply for funding.
People living with hydro-huh? have a boat load of questions we'd like answered and decisions to make that we'd really rather not be making. There is research going on that addresses many of these concerns. Should I have brain surgery to place a shunt to drain the excess fluid, or should I have a newer, slightly more risky surgery called ETV-CPC that is also brain surgery and the surgeons have less experience with? (or if you dare try to say it: Endoscopic Third Ventriculostomy with Choroid Plexus Cauterization) What are the pros and cons of each? What type of shunt will the surgeon place: a programmable shunt, a shunt with the ability to compensate for a particular side effect called siphoning, or a plain shunt without any extra attachments? How long will an ETV last before it's necessary to have another brain surgery? What are the complications of these brain surgeries? Why do some people have shunt surgery, not needing another one for twenty years, and others seem to have brain surgery every year? What can we do to decrease the incidence of infection and shunt obstruction following surgery? What causes a shunt to become obstructed? What does that even mean? How does a healthy brain normally recycle used CSF? Can we mimic this somehow? Are there any drugs that can do this, instead of putting folks through surgeries and risking infection?
All of these research topics center around relieving the pressure of hydro-eh? but little research has been done to discover the genetic causes. Until now. Dr. Kristopher Kahle has been leading a team of researchers looking for genetic mutations associated with hydro-what-ulus in all its various forms. They are doing this by recruiting willing volunteers diagnosed with hydrocephalus and their families to donate a few cheek cells. My family has the pleasure of having our DNA as part of that study, due to my being gifted with water-what's-it presumably from birth. The results are in: Dr. Kahle and his team have found four new genetic markers associated with hydrocephalus. They are named SMARCC1, TRIM71, SHH, PTCH1, and we add them to the already identified x-linked mutation L1CAM.
Dr. Kahle is asking the question, “Is hydrocephalus a condition in and of itself, or is it a symptom of a larger condition?” The answer to that question appears to be that hydrocephalus is only a part of a larger genetic condition. When we shunt individuals or perform ETV surgery, we are relieving the pressure of the excess fluid on the brain, but we are not curing the condition. As long as the genetic mutations are present, excess spinal fluid will continue to be made by the body.
I look forward to hearing more about the research being performed around hydrocephalus. Hy-dro-sef-a-lus. Hy-dro-sef-a-lus. Hy-dro-sef-a-lus... The Hydrocephalus Association has recordings of the latest webinar about Dr. Kahle's research, and other interesting Hy-dro-sef-a-lus facts! Check it out at hydroassoc.org.
"It's always best to set up camp while there is still natural light outside. That way one can find the way to the toilet and locate some Large-Leaved Aster leaves to use as toilet paper. Next, assemble the tent, get a good hot supper cooking and have time to enjoy the stars before settling into a comfortable sleeping bag and getting a good night's sleep.
"Throughout most of my life, I'd avoided learning to play piano. I'd played violin for about fifteen years, dabbled in recorder and bowed psaltery, but avoided piano because it was too 'ordinary'. Plus, it required using one's hands and fingers in a 'mirrored' sort of way, which I found difficult. I'd avoided learning to knit for the same reason, though I knew how to crochet and cross-stitch.
"I now had a new brain. The old pressure on my ventricles was gone, the pressure I'd quietly lived with for forty-five years, unknowingly. So, my curiosity overwhelmed me: would this change me in any way? Would I become a different person? Would I suddenly have new abilities previously unknown?
"The answers to these questions were 1.) yes. I now didn't have to live with the symptoms of hydrocephalus, 2.) no. I would still have the same basic personality, and 3.) maybe. The doctors said it was unlikely, but I held out hope to discover new abilities. With this in mind, I taught myself to knit! And I took piano lessons. I experienced something I had never experienced before, a connection between my right and left hands, in my brain. I could actually feel the connection, and the more I knitted and tickled the ivory keys, the more coordinated I felt. Coincidentally, typing on the computer keyboard became a similar experience. I think these activities actually help my brain to function faster."
--from pp. 71-72 in The Lakes In My Head, Paddling An Unexplored Wilderness
You may be wondering why you haven't heard from me for a few weeks. I just got out of the hospital, again, except this time I'd scheduled the procedure in advance. It wasn't an emergency like it often is.
My cardiologist at Abbott-Northwestern Heart Hospital performed an Electrophysiology Study and ablated (destroyed) some cells in my heart that were not behaving properly. These cells insisted on creating an extra loop of electrical conductivity which interfered with my heart's regular, consistent rate. It's called AV Nodal Reentrant Tachycardia. By itself, it's not serious, but living with it for forty plus years does put a strain on a person's heart. Back in the Dark Ages of Electrophysiology, I had an EP done to try to eliminate the problem, but they were unsuccessful. It was a good thing they didn't try again then, because if they had I'd have had a pacemaker all these years. Instead, I went on medication to control my heart rate.
Now, in 2019, it was a completely different experience. In fifteen years cardiologists have learned a great deal more about mapping the electrical conductivity and pathways of the heart. I am part of a small portion of the population that has this extra electrical loop. It's not easy to obliterate that loop without damaging the Atrioventricular Node, the bundle of nerve fibers that assists in keeping the heart beating at about eighty beats per minute, but my EP cardiologist--EP is his specialty--was able to do it. And he's a nice guy, to boot. He was very pleasant and informative to speak with, while also exhibiting compassion and care. He didn't arrogantly build up my expectations of his work, nor did he cringe outwardly at the thought of what he knew might be a difficult procedure. He was just confident in his abilities. His confidence made me feel certain I was in good hands, though we didn't know exactly what the out come would be this time. We agreed he wouldn't do anything that would cause me to have a pacemaker.
My cardiologist was only one cog in the system. There were about fifteen people who were also members of the team that cared for me. Two anesthesiologists, three surgical nurses, transport aides, post-anesthesia recovery nurses, at least two nurses who cared for me during my overnight observatory stay, more aides, and we surely can't forget the staff who cleaned and prepped the surgical suite and the room I slept in overnight. All were pleasant, efficient and cheerful in welcoming me to the various rooms and suites. Having worked at this hospital in the past, I know there is a high level of excellence expected from the staff, and they perform up to that level. The result of this is that the hospital is able to afford to choose its technology wisely. The surgical suite was well-equipped. Electrophysiological equipment is high-tech, so the suite used for EP's reminded me of watching a show like Grey's Anatomy or The Good Doctor. Plus--get this--the surgical table had a layer of memory foam on it just for me, the patient, and my comfort. Discreet ties held my arms and legs down on the table, and the anesthesiologist put his head down close to my ear to speak to me, even offering to use saline wash to clean my eye when a tiny speck of lint from one of the warm blankets flew into it. I felt a bit pampered. I'm not deserving of this pampering. They did it because they care.
The result of all this, hopefully, will be that I will be able to race-walk a 5-K in five months or so without having to take any medication to slow my heart. That would be absolutely amazing and worth celebrating in a big way. What do you think I should do to celebrate? I think I'll just walk another 5-K, and another, and another...
Good afternoon from snowy Minnesota, USA!
Let me introduce myself: My name is Lesli. I have a husband named Ken, two cats named Mango and Butternut, and a freshwater aquarium full of small fish. My adult daughter is on her own now, but we enjoy seeing her frequently. I've lived in Minnesota all my life, but I've traveled all over the U.S. and to England and South America. I enjoy camping, being outdoors, singing in choirs at my church, learning as much as I can about music, and caring for my neighbors' children and pets. Oh, and I also have hydrocephalus.
I worked for close to twenty years in the human medical laboratory industry and in veterinary clinics as a vet assistant. I have a bachelor of science degree in biology, having taken many more credits than I needed because I couldn't narrow down my field of study. Everything fascinates me. I also love to learn. I pursued becoming a medical technician, a physical therapist, a naturalist, and a veterinary technician. I was persistent. It seemed like I was always struggling with medical conditions that were limiting me. Then I was diagnosed with hydrocephalus.
Over the course of my life I've raised rabbits, cats, a dalmatian, fiddler crabs, freshwater fish...even an anole from Florida that piggybacked into my house on a Norfolk Island Pine. I adopted a cockatiel that had escaped from his owners, flown an unknown distance and landed in my neighborhood. One of my cats died from feline leukemia; Matthew's heart stopped because of hypertrophic cardiomyopathy; Kaci, Gretchen and Princess all died of different types of cancer. The dalmatian had a spinal injury of some kind, but lived to almost thirteen. Feline Heidi and cockatiel Alec actually lived into old age; we were pleasantly amazed. Turns out, I have a medical condition, too.
I've lived along side two parents, my father and my husband's mother, as they struggled with dementia and then passed peacefully away. There have been two suicides in my extended family. I would never consider suicide as an option; I have way too much to live for. I was there when one grandfather, several great aunts, several cousins, an uncle, and both of my grandmothers passed away. To our knowledge, none of them had hydrocephalus, but now I do.
By the age of forty-five years I had already lived a full life of service to others and to God. Actively involved in the Christian church as I was growing up, through my college years, and the years following, I had a firm foundation of faith to rely on. Faith in a loving God who is always by my side. Faith in a just God who acts in our lives for our good. Then, I was diagnosed with the kind of hydrocephalus that is usually diagnosed at birth or soon after. The surgeon said I was probably born with it. Aqueductal stenosis, he called it.
And, guess what? It can't be cured...yet. It can be treated through brain surgery, often several or many. This was my prognosis. I knew what hydrocephalus is, but how could I have it now? I'm not a newborn! I'm forty-five years old!
Well, I'm making it through this latest journey in my life, and I am happy. It's been twelve years since that diagnosis. Twelve years that haven't been easy. I'm still here on the planet and I have a story to tell!
Read The Lakes In My Head: Paddling An Unexplored Wilderness, published by Xlibris Publishing, written by yours truly.
"The National Weather Service has extended the Winter Storm Warning to include Hennepin County from 10:25 am February 7th until 12:00 am February 8th. We are expecting an additional 3-5” of snow and blowing snow. Wind gusts could reach up to 35 mph. Driving will become more dangerous, leave early and increase following distance. For up-to-the minute weather data, visit hennepinwestmesonet.org. Hennepin County is also in a Wind Chill Advisory from 12:00 am tonight until 12:00 pm February 8th. Wind chills are expected to drop to around -30 °F Friday as temperatures will be around -18 °F with wind speeds between 10-15 mph. Make sure you and your loved ones are bundled up, and check on neighbors." Be sure to heed these warnings, Minnesotans!
Cold weather doesn't always have to be about warnings and danger! Here's a reprint of my earlier blog about winter camping in the Boundary Waters Canoe Area.
In my book I write about canoeing in the Boundary Waters Canoe Area of Minnesota, a wilderness area adjacent to the Canadian Quetico. Without question, it is some of the most beautiful wilderness I have ever been to for canoeing and rustic camping, but did you know it's a great place to ski camp in the snowy Winter months?
Right now in Minnesota there are several inches of snow on the ground. This means we are in Winter camping mode, not canoeing mode! Camping in the snow is amazing. Let me tell you a little about one of my trips to the BWCA in Winter.
As always, our group began with several meetings to plan and become acquainted with each other. I would be spending a week in wilderness with men and women I didn't know very well, and we had to build trust with each other. We would be away from civilization, so our planning was detailed and thorough. We began our trip in Ely, Minnesota, on the edge of the BWCA. The town of Ely is well equipped with businesses that cater to adventurers and campers; this industry is the mainstay of the town.
Our group cross country skiied with heavy backpacks, towing specially designed sleds from our starting point near Lake One. We were transporting everything we would need for a week to our first camp site on the ice at the shore of the lake. We skiied from lake to lake, and across the ice, following our plan. Upon arrival at each camp site along the trip we prepared our tent by burying the base of it in the snow to secure it to the ground, carving a "kitchen" area out of the snow, looking for a good place to cut a hole in the ice to obtain water, and preparing our insulated sleeping pads and winter weight sleeping bags for use later that evening. We boiled the water and made yummy hot meals for ourselves with our portable camp stoves.
After cleaning up the kitchen we split up, taking time to do personal things, like drying out any damp clothing. One important rule of cold weather camping is to remain dry on the skin but well hydrated inside! Just before climbing into our sleeping bags each of us filled up our water bottles and took a few swigs of water, placing the bottles in the sleeping bag with us to keep the water from freezing. We slept in as little clothing as possible, stuffing the unworn clothing into the bag with us to keep it warm and dry. Our first layer was long underwear made with polyester, polypropylene or wool, all of which trap heat even when wet or sweaty. Next came polyester jackets or pullovers, then a down insulated layer and lastly a water repellent wicking layer to keep snow from melting on us, but allow the sweat generated by skiing to evaporate into the cold Boundary Waters air.
Part way through the week an Ely dog musher met us at one of our camps, staying with us for a night and a day of learning about dog sledding. Each of us had the opportunity for a try at mushing if we so chose, and at skiing while being pulled by dogs. The dogs were friendly and obedient; they trusted the musher who was the leader of their pack. They slept outside buried under the snow at night and ate high protein, high calorie food to stay warm and happy.
One evening the weather was cold and it had been snowing all day, so we were tired, but kept warm as we told jokes and stories in the tent, which stayed about ten degrees warmer inside than it was outside, just from our body heat. A member of our group had a minimum/maximum registering thermometer in his pack. He was able to confirm that the temperature one cold night got down to thirty-two degrees Fahrenheit below zero, and yet we all stayed warm and dry by wearing the right clothing, eating well, drinking plenty of water and using our muscles. By the end of that week, I was ready to stay outside even longer, my body was acclimated to the cold and enjoying the beauty and peace of living on the edge in the BWCA.
The lakes in Minnesota offer the opportunity to enjoy team work, friendship, learning by experience and seeing indescribable beauty. The lakes in my head offer me the same opportunities. I learn more about how to live with my hydrocephalus and other chronic medical conditions by making new friends, sharing joys and sorrows with them, walking or rolling along with them on their hydrocephalus journeys, and seeing how beautiful each one of us is just by being who we really are with each other. As Winter campers sharing practical camping techniques or equipment with friends, those of us on this hydrocephalus journey can encourage and share practical advice.
Last night I had the honor of attending a memorial service for one of my most influential teachers. My high school choir and orchestra director, we called him "Mr. A." While at the service, I saw a teacher who was also my brother's track coach. I was a statistician/assistant to the coach for a short time, back in the day. Each one of us is running a race called life. We have hurdles to leap over, some people more than others. I don't remember what his coaching style was like, but I do remember my choir director's style. His teaching style was that of a beloved older brother showing you the way. He had a beautiful professional singing voice, but none of us students ever knew that. To us, he was a friend and mentor. After the service, many of us gathered to share stories of how we each had experienced his jovial, enthusiastic, warm and caring personality. We were invited to gather as a group and sing a song for his wife, a hymn from the Lutheran Hymnal. While stepping forward to sing, I saw a fellow choir member approach the stage, immediately recognizing her wonderful naturally curly hair and precious smile. It was such a joy to see this great friend and fellow Pop Group singer after...how many?...over thirty years. Yes, I used to be able to sing and dance at the same time. Not anymore, but I'm slowly working on it.
She and I began discussing our lives as people do after being separated for decades and discovered something absolutely amazing. We were both intimately acquainted with hydrocephalus. As far as we knew, we were the only two students from our class who attended the service. Amazing odds? You bet! It turns out, her first-born son acquired hydrocephalus within his first year of life. She had no one to turn to for advice and not much money for medical care. The clinic she attended for emergencies apparently had no knowledge of hydrocephalus. A relative who also happened to be a nurse finally saw her son and immediately knew he needed to be seen by an experienced pediatrician. Her relative helped her pay for his care. Thus began her journey at the side of a boy requiring multiple brain surgeries throughout his life. He is a young man now, with a college degree, looking for a job. He successfully completed school, but has been struggling with motivation. Don't we all? She had tears in her eyes as she told me her story. We hugged a lot. During the drive to my modest middle class home I was on the verge of tears, too, but happy tears, tears of joy.
Meetings like this were the reason I began volunteering with the Hydrocephalus Association years ago. The opportunity to be in the right place at the right time to encourage people who were having to constantly explain to others what hydrocephalus is. Who had to fight for assistance with their children's medical care. Who were finding out for the first time that Spina Bifida runs in their family. Who were afraid their child might not make it through high school graduation. My friend made it through all of those things by herself because she is one strong and persistent woman. I became a volunteer so that mothers, fathers and care givers might not have to travel this journey alone. I can't always give them the answers they seek, but I can refer them to professionals who may have the answers. And I can tell them not to give up when the medical community seems cold, like they are only a number. I know from my experience inside the medical community that no one is just a number. Surgeons, doctors, nurses, nurse practitioners and lab staff are all doing the best they can. We need to support them as they support us.
So, this is why I speak openly about my life experiences. I love my high school friend. It was good to see her and remember choir adventures. It was also good to know that my struggles in life may have given her some hope and encouragement. This is why I volunteer for the Hydrocephalus Association!