Did you hear that?
The last two days I've been given an amazing gift. It's been there all along, but this gift has turned my attention toward the sky.
Two days ago, while walking from my house to the garage, which is also my husband's shop and where he spends much of his time, I heard a faint but distinct bird call. I knew instantly what it was and looked high into the sky to find the caller. My eyes followed and locked on to the source of the calls: a broad-winged hawk. Then yesterday it was two broad-winged hawks calling to each other. It's a little late for the semi-annual hawk migration that occurs every spring, and it's more common for us to hear and see Cooper's hawks or red-tailed hawks in our neighborhood, than broad-wings. What a treat to be rewarded for my many hours of listening to bird song recordings! The sound-siting gave me an inner feeling of accomplishment and thankfulness that still makes me feel good just to remember it.
Almost every day I walk to stay healthy. It keeps my heart and muscles strong, keeps me feeling positive and gives me energy for my day. I often walk outside in our neighborhood near Minnehaha Creek or around Lake Nokomis. While outside I never listen to music with ear buds in my ears; that would block out all the sounds of nature I enjoy. My intention is always to push myself to walk as fast as I can, but so often I get side-tracked by seeing or hearing a bird. If it's pouring rain outside I walk on the treadmill in my basement, and only then do I have ear buds in my ears--listening to recorded bird songs and calls! I am a musician; I love music, but when I hear it I stop whatever I'm doing and listen or dance to it. If I can't walk to the beat of the music it drives me crazy, so exercising to music is out for me unless I find the perfect song to play with the exercise I'm doing. I discovered that bird songs and calls are beautiful to hear while exercising, without the temptation to follow a beat. I can focus on my body, its movements, how I'm feeling, listening to what my body needs that day. The side benefit of this is learning to recognize bird calls.
As all birders know, many small song birds are elusive, hiding in the forest understory and hunting for insects under the dead leaves, or camouflaged high up in the leafy branches of a mature hardwood tree. Even using binoculars they can be difficult to spot. If I pay attention to my ears the sounds of the forest or lakeside will reveal the presence of birds that are concealed there. In my book, The Lakes In My Head, I write about how exciting it was to first hear, then eventually see my first varied thrush four years ago in Alaska on the Kenai Peninsula:
"We saw the peak of Mt. Denali (formerly McKinley) in the dazzling sun from the Alaska Railroad train car. We breathed the fresh, clean air of the Alaskan coniferous forests. I identified over thirty bird species I had never seen before, by sound and by sight, including varied thrushes, a highlight of the trip for me--and a source of amusement for my husband and friend, who teased me about my birding excitement. We saw moose, magpies, and ravens wherever we went, even in the city, and black bear, grizzly bear, porcupines and Arctic ground squirrels in the forested areas."
One night while staying in a tiny cabin at Denali, falling asleep while it was still quite light outside due to the Alaskan summer I was rudely startled by the very loud sound of a wood thrush (or possibly a Swainson's thrush, I don't recall) echoing through the crisp air and bouncing off the hillsides right outside the cabin door. My husband, Ken, was soundly asleep, but there was no way I was going to get to sleep with that "noise" outside the cabin. My curiosity overwhelmed me. I got up, put some pants on, and went outside to quietly stalk the bird. Again, the call told me it would be on the ground among the bushes beneath the pines and I followed the sound to where it was. I was rewarded with a really good siting of the bird standing on the ground singing away with all his might. No binoculars necessary. He kept on singing while I tiptoed back into bed. It took me a bit to fall asleep again. The bird, however, clearly was not going to be sleeping any time soon!
Do you listen? I mean REALLY listen? Do you pay attention to all the sounds around you? Try it some time. The next time your child runs to you demanding your attention, give her or him ALL of your attention. Listen to what she's saying between the lines. The next time you're outside listen to all the sounds you hear. Do you hear the wind rustling the leaves, the family across the street talking to one another, the two men on the corner having a lively discussion, the sound of the mud squishing beneath your feet after a rain? It's such a privilege to be able to hear the details.
Welcome back to my blog!
It's been a challenging six months since I last checked in. Many hours soaking in Epsom salts, pampering my back and spine, faithfully doing physical therapy exercises twice daily, more often if necessary to relieve pain, have brought a focus to my life. A focus on caring for my body once again. This led to caring for others when a close relative fell and broke her hip, needing comfort and assistance. She can't care for her dog any more, so I'm doing that as well.
Then, of course, the threat of the novel coronavirus has increasingly become a major part of our lives worldwide. It is almost impossible to get through a day without hearing some news station or neighbor or friend talking about possible infection. With my scientific and medical background I have tried to keep up with all the latest accurate information. "Accurate" is the key word in that sentence! Not all information in the news or on the internet is scientifically accurate. We are worried about losing our jobs, our finances, our health, and our families. It is easy to let that worry take control. Concern and learning about the virus is helpful and can even be calming to know we are doing something about our situations. All of this baffling new information, doing our best to protect ourselves, our neighbors and friends, and wondering when or if everything will get back to "normal" can leave their marks on our lives. This can include back, neck and shoulder pain.
One thing I've learned is that many of us carry our stress in our backs, necks, and shoulders without knowing it. Then one day as we are thinking we're handling life quite well, seemingly without fear or anger, pain rears its ugly head to remind us that we are keeping our emotions inside and not dealing with them directly. Each time we feel strong emotions or are in a stressful situation our bodies release hormones and chemicals that are supposed to help us flee from the perceived danger. If we don't physically flee--as in, run away--those chemicals remain in our bodies. Over time they cause pain and stiffness.
One way I have found to handle stress effectively is to GET OUTDOORS! Fresh air, sunshine, physical movement! Dancing! Running! Walking the dog! Biking! Yoga! Swimming! Do it all outside if you can. Even running on a cloudy day helps. As long as you stay six feet away from others you can still talk to them. The wind, fresh air and UV light from the sun will help keep you safe from the coronavirus. Seeing others out enjoying the outdoors is heartening, as well. It keeps us connected. It keeps us positive. The Bible says in Proverbs that "a cheerful heart is good medicine." That is actually true. Staying positive boosts our immune systems and gives us energy.
Get outside and do something fun! You will feel better for it and so will your friends and family!
It's Minnesota. The green leaves on the trees are slowly turning yellow, orange, and red in response to the cooler nights of September. The animals have begun preparing for winter. Families are re-arranging their schedules to accommodate the kids going back to school. There are sports and after school classes to sign up for, and child care to plan for those times when parents can't get home from work right away. Kids are nervous or excited for starting a new school year.
It's time for me to brush up on the things I've forgotten.
I knew this day would come, the day that I can't remember the details of those challenging ten years that began in 2006. Life has been unpredictable and busy this summer, and I haven't had time to do what I've done every summer since 2010, talk to others who have been newly diagnosed with hydrocephalus. Bring them hope and encouragement as they face the prospect of brain surgery for the first time. Help them understand what hydrocephalus is and how to spell the dang word!
My diagnosis experience went something like this, an excerpt from my book:
"The appointment was scary, no doubt about that. The surgeon wasn't scary; he had a confident yet gentle, and soft-spoken demeanor. He told me I was not alone. At first I thought that was an odd thing to say, but as I pondered it I realized I do feel alone. After all, I am the only one inside my head. He was willing to answer every one of my questions. I had a long list. He actually gently took my list from my hands and read each question quickly, saying 'yes' or 'no' in response, giving a short explanation if needed. He didn't ignore a single question. What I needed to know so badly, he couldn't tell me for sure. I asked, 'Do I have hydrocephalus because I fell and hit my head?' His answer was an immediate, 'No.' 'So, I had to be born with it and no one knew it was there?' I asked. He nodded his head yes. He had seen a lot of cases of hydrocephalus, I reminded myself. He should know. He showed me the MRI images of my brain, and specifically, the colorful hour glass shaped Aqueduct of Sylvius connecting the lateral and third ventricles with the fourth ventricle. Do you recall my lesson on Minnehaha Creek and the four lakes it connects? Do you remember the beavers? Well, my Aqueduct of Sylvius was shaped like an hour glass. It wasn't supposed to be. There was a stenosis, or narrowing of the flow, right in the middle and the fluid had backed up on either side of the stenosis, creating an hour glass shape where there was supposed to be a straight, open canal. The surgeon said this particular condition, aqueductal stenosis, is almost always congenital. I was born with it. The beavers had been busy during my gestation in the womb.
"I was in disbelief. How could I have had hydrocephalus for forty-five years without anyone knowing it?
"The solution, I was told, was to surgically place a shunt in my brain to drain off the excess cerebrospinal fluid. A ventriculoperitoneal shunt is a long silicone catheter placed with one end in one of the lateral ventricles, sliding the other end under my skin all the way down to my peritoneal cavity. The end in my brain (the anterior end) would have a one way valve on it that could be set to open when the pressure in the ventricles reached a predetermined setting. Then, fluid would travel down the catheter and be absorbed in my peritoneal cavity, the space in which the lower half of my internal organs lies. The valve setting would control how much CSF is allowed to travel down the catheter and when.
"'So, we should schedule your surgery soon.'
"Brain surgery? But this was not on my agenda, my life's plan!"
Complications with my shunt, or possibly living for forty-five years with a brain condition my body had to compensate for, later caused me to permanently lose some of my brain capabilities. I lost some of my short-term memory and executive function. This means that periodically I need to re-read my book The Lakes In My Head to remind myself why I am anxious about forgetting things. It brings me wondrous relief from anxiety; it eventually returns, but I can take comfort in remembering why it's there to begin with. Writing the book was hard work, but well worth the effort!
Right now, my life is filled with messiness.
Loved ones who need assistance with life-threatening illness. My back is complaining from my recent endeavors, so I have to do exercises for it. I care for babies and kids; they make big messes, sometimes on me. My house is messy. My pets have messy moments. Relationships are messy at times. My writing space is, well let's just say that I can find things, but others who want something from my office can not. Some people thrive on messiness. Artists and inventors often create wonderful art or solutions to problems in the midst of messiness.
For the past couple of summers I have raised monarch butterflies in my house. In my office, in fact. With the door closed it is a haven for little caterpillars working on becoming butterflies. We frequently use the butterfly's process of pupating to express the uncertainty of proceeding through changes in our lives. "Just hang in there," we say to one another. "A butterfly will emerge from all this. It will be beautiful!" Butterflies make it look so easy! A quiet yet spunky, persistant caterpillar emerges from a practically microscopic egg stuck to a milkweed leaf. It blends in so well with the leaf that we can hardly see it. First it eats the egg casing it came out of. It looks like a black dot (its head) munching its way around in a circle on the leaf. When it's ready, it sheds its skin and eats that, too. The caterpillar's skin changes to the familiar black, yellow and white stripes. Eat some more milkweed leaf. Eliminate the waste, called frass. Grow a little longer and bigger in circumference. This is the focused life of a caterpillar. It sheds its skin three more times, each time becoming longer and larger, until after nine to sixteen days it somehow knows to stop eating and eliminates its last frass. Suddenly, it's on a mission: crawling away from the milkweed to a quiet, safe place where it rests momentarily. It glues its tail end to a stick or something else firm off of the ground using a fine webbing of silk. Next it hangs by its tail forming the shape of a J and begins to pulsate internally, pulling itself into an "o" shape, and back down into a J. If you look away at this point to check your cell phone, by the time you look back at the caterpillar it is gone, and in its place is a shiny, mint green, ovular chrysalis with a black "stem" attached to the silky web. It will stay this way for eight to fifteen days, gradually becoming darker and darker, wearing sparkling gold jewelry, thus the name monarch. At the end of this pseudo-gestation period, a wrinkled but beautiful bright orange and black butterfly will slowly, patiently slide out of its translucent membrane, unfurl its wings and fly away to find out the lay of the land. Looking for flowers, it will drink nectar to restore its energy while it searches for a mate.
Sounds neat and organized, doesn't it? It is, for the most part, and since butterflies are insects their bodies are following a predetermined schedule of transformation. Individual butterflies don't question their purpose, decide to go on a vacation, or demand a different schedule. They quietly do what they're created to do....unless...someone or something interferes with that schedule. Then, their lives become downright messy! Parasites may lay eggs in a caterpillar, causing it to die when the alien eggs hatch, releasing the newly emerged flies or mites. And though the chrysalis looks shiny and smooth and even peaceful on the outside, what's happening inside is anything but! I have accidently disturbed a caterpillar in the stage of forming the chrysalis (pupating), killing it and turning it into a puddle of bright green goo with no sign of a caterpillar or butterfly body. It was like a scene out of a horror movie. It worried me for days! Once I realized that the goo was just part of the process, and how fragile the chrysalids are I felt relieved and ready to try again with a new caterpillar.
Maybe we can learn a lesson from this. When life throws a wrench in our neatly organized plans, relax and remember that the green goo before you is simply a messy part of life.
I love my mom!
Today I spent three hours with her, taking her to an appointment, buying food and treats for her and her dog. While we were at the grocery store I purchased food for my husband and I as well. My mom lives in an apartment with her "chiweenie", Jewel. Jewel is a rescued dog who is part chihuahua and part dachshund. I take my mom where she needs to go, because she sold her car to me, knowing she was not a safe driver anymore. It is my way of showing gratitude both for the years she chauffeured me to teenage activities and for her wisdom in admitting her weakness as a driver. I have never wanted to receive that phone call telling us she has been in a car accident.
In high school and college she patiently drove me everywhere I needed to go as I was afraid of driving. After completing driver's education I needed practice, but I really had no desire to drive a car, so I had no motivation to practice. Eventually, a very patient and special college friend allowed me to use his vintage car to practice behind the wheel in Bemidji. He suspected I just needed to build up my confidence in order to take the behind-the-wheel examination. He was absolutely right and I completely surprised my parents on my college graduation day with a trip to one of Bemidji's local restaurants for a post-commencement meal they never forgot. I drove them there, proudly showing them my new driver's license. Even then I knew I'd show my gratitude by giving others rides when they needed them.
Many people growing up with hydrocephalus have difficulty learning how to drive. Taking their behind-the-wheel examination several times is not uncommon. It's challenging enough being a teenager without adding the pressure our society puts on us to be independent by having a driver's license. After my last brain surgery, followed by cognitive therapy, I was assigned a therapist specifically trained to assist behind the wheel of a vehicle, coaching me and testing me when I was ready. I had to relearn how to use my peripheral vision and to pay close attention while driving. I was nervous about this but in a few weeks --with practice-- I was certified as a safe driver.
As I look back on my life, I see how so many family members and friends patiently endured inconvenience for my sake. I am incredibly grateful for their kind, truly loving actions. My husband has accompanied me more times than I want to admit to the Emergency Department. My daughter had to rely on her dad and Grammie for support through junior high and high school, while I was recovering from the latest hospital adventure. My good friends in Bible study last week listened to me rant and rave about how angry I was about something that happened to me on social media. A friend once painted our kitchen for us when both my husband and I were unable to do it. Our neighbors mowed our grass when we were both having back problems.
Kindness and caring go a long, long way toward building peaceful communities. They are also helpful in relationships with those who have disabilities. True friends will take time for you. And remember to thank someone today for their kind help. Needing help is not a weakness. It happens to all of us. On the other hand, not being able to ask for help is a weakness. We often hide our frailties
In 2006 I was diagnosed with congenital hydrocephalus. At that time I was forty-five years old, but congenital means being born with it. So how could that be and what is hydrocephalus? An excerpt from my book will help explain.
"I believe a geography lesson would be appropriate here. Stick with me and you'll see how this fits into my story. Minnesota is known as the Land of Ten Thousand Lakes and is the birthplace of the mighty Mississippi River. I was born and raised in Minneapolis, one of the Twin Cities of Minneapolis and St. Paul. The Twin Cities metropolitan area is roughly in east-central Minnesota; Warroad, Minnesota, is almost as far north as you can go in the United States, except for Maine and Alaska. Minnesota is that place the meteorologists often say is the coldest location in the lower forty-eight states.
"We love our more than ten thousand lakes and rivers here in Minnesota. We enjoy swimming, boating, fishing and scuba diving in the summer and snowmobiling, ice fishing, cross country skiing, downhill skiing, and snowboarding in the winter, in or on the lakes and rivers. Some (fool?) hardy residents even take the plunge by jumping into water surrounded by ice after warming up in a sauna. It started as a Scandinavian thing and many Minnesotans are of Scandinavian ancestry.
"Living in Minneapolis, the City of Lakes, I reside near Lake Minnetonka, Lake Pamela, Lake Nokomis, Lake Hiawatha and the creek that connects all of them, Minnehaha Creek. Minnehaha means 'curling waters' in the Native American Dahcota language, though it is frequently mistranslated as 'laughing waters'. The water from Minnehaha Creek becomes Minnehaha Falls, then empties into the Mississippi River which meets up with the Minnesota River and becomes the back bone of our country. The headwaters of the Mississippi, Lake Itasca in northern Minnesota southwest of the Boundary Waters Canoe Area in Itasca State Park, are not dramatic to behold. They trickle placidly and grow in strength as they flow south toward the Twin Cities. The mouth of the mighty Mississippi is way down South in New Orleans, Louisiana. That's a lot of water making a very long trip to the Gulf of Mexico. It mixes with saltwater from the ocean, forming a unique and special habitat known as an estuary. Estuaries are fascinating. Freshwater and saltwater wildlife live together, taking advantage of the ocean tides to obtain the nutrients they need to survive.
"Along the way, that water is vitally important to the whole planet. The United States relies very heavily on the Mississippi River to transport food and supplies. The river feeds a thirsty country. It provides essential habitat for birds, fish, crustaceans, insects, restless families in canoes... you get the picture. The water in the river evaporates into out air, fueling weather patterns. Nothing is wasted. Our economy is heavily dependent on the Mississippi River, and natural disasters like flooding effect how we all spend our finances. The Mississippi is written about in recreational books and textbooks. History has been made around it."
Up next: a biology lesson that, along with this geography lesson, will answer the question, "What is hydrocephalus?" Stay tuned!
It's time to go back to school, readers. Here is a biology lesson on hydrocephalus.
“Carefully protected inside the human head, inside your brain there are four compartments called ventricles. Filled with cerebrospinal fluid, they are connected by several narrow passageways and special cells. Cerebrospinal fluid, or CSF, flows between the two lateral ventricles, down to the third ventricle, through the Aqueduct of Sylvius (also called the cerebral aqueduct), and down further into the fourth ventricle, then into the narrow space surrounding the brain and the spinal cord. The CSF that bathes our brains provides important nutrients to the neurons and spinal column. It helps clean out cellular waste, and protects us by filling the space between our brains and our skulls with an absorptive cushion of fluid. Without it we would experience major brain trauma each time we bumped our heads.
"Our bony skulls act as armor. Newborn babies have a soft spot, the anterior fontanel, where the skull has not finished growing together. Their brains are protected in that spot by a membrane that covers the hole. Soon after birth, the hole disappears and in its place is a completed bony skull. As the baby grows and matures, the brain and skull grow and mature as well. Once the CSF has made the rounds, so to speak, through the whole system, it is expelled from the brain by special cells, and absorbed into our bodies. Nothing is ever wasted.
"Hydrocephalus (hi' dro sef' uh luhs—from two latin words meaning “water” and “head”) occurs when something prevents the CSF from freely flowing in the “lakes and creeks and rivers” inside the head. Yes, that was the reason for the geography lesson, not to mention it was fun to tell it to you. I am proud to be a Minnesotan. Imagine what would happen if Minnehaha Creek or the Mississippi River was dammed up by beavers. Where would the water go? It would overflow its banks and flood the surrounding land, maybe even spilling over the top of the dam. Though CSF may be impeded by an obstruction in an aqueduct, it continues to be produced at the rate of 0.35 milliliters per minute and flows through the system anyway. In babies, because their skulls are not yet knit together completely, the CSF pushes against the brain, causing the skull to expand to accommodate the fluid. The anterior fontanel may bulge or be abnormally convex. The pressure inside the brain increases abnormally. In teenagers and adults, whose skulls are complete, the extra pressure builds as the fluid has no where to go, so it presses against brain cells, causing pain and problems for normal cell function.
"This may cause urinary incontinence, mobility abnormalities, cognitive and language learning disabilities, and severe headaches, like migraine headaches, and no over the counter medication will suffice.
"Common causes of hydrocephalus include congenital lesions (e.g. spina bifida), traumatic lesions (concussions), and infections such as meningoencephalitis, as well as congenital aqueductal stenosis and a rare genetic disease. One form of hydrocephalus can be misdiagnosed as Alzheimer's Disease or Parkinson's Disease. Usually neurosurgeons can tell you which type of hydrocephalus you have and how best to treat it.” --From The Lakes In My Head: Paddling An Unexplored Wilderness
So, we do have lakes in our heads, do we not? When my hydrocephalus was discovered, my cerebral lakes were filled to overflowing, much like the flooding we have been experiencing in locations all over the world, due to climate change. With lakes in our heads and lakes all around us, it is difficult to ignore our need to use wise stewardship for them both. Let's take care of all of our lakes!
Remembering another June, seven years ago in 2012...
"June was an emotional month. After helping with a neighborhood garage sale, I was hoping July would be more regenerative, but life was reminding me it was still June: while out to dinner with an out-of-town friend, we received the call that Ken's brother with Parkinson's had fallen off his bicycle and was at the hospital emergency department with a fractured cervical vertebrae.
"One of the joys of working with children under the age of six years old is experiencing their intellectual honesty. Their agendas are simple; they are open and honest about their thoughts and feelings. I learned at an early age that openness and honesty are important to me, in both expressing my own thoughts and feelings and others expressing themselves to me. As an adult I learned that in times of crisis it is important to be honest with myself and my loved ones.
"So, here I am being painfully honest with you, dear reader. Oh, *!&*! I wanted to run away! Would the devastating events ever end? Where are You when I need You, God? Please, please, O God, help us now! Is this what it feels like to be a Jack pine in a forest fire?
"The Jack pine is the smallest of our native pines, and the only Minnesota pine tree with short needles. The short-needled trees typically sold as Christmas trees are usually spruces and firs. Mature Jack pine seed cones are curved and sealed shut with resin, making them look like large grubs. The bark is usually grey or brown with scaly or flaky ridges. In favorable conditions (sandy soils and bright sunlight) they can grow up to one hundred feet tall, but are usually shorter. One Jack growing in the BWCA had been aged at two hundred forty-three years old as of 2008.
"Jack pine seedlings need direct sunlight; they will not survive under a shaded forest canopy, so other pine species will take over. This is where fire fits in. Natural, periodic crown fires melt the resin that seals the cones. The mature trees may die in the fire, but soon after the fire passes, the unsealed cones release their seeds into the ashes. The new seeds grow quickly in the fertile soil created by the ash, and bright unimpeded sunlight. The result is a beautiful, pure stand of like-aged Jack pine that are free to grow well into maturity, unimpaired by other trees seeking sunlight." (from Chapter Seventeen, The Lakes In My Head: Paddling An Unexplored Wilderness, Lesli Chinnock Anderson, Xlibris Publishing, 2017)
I am determined to have the tenacity of a Jack pine cone. Fire will not hurt me, it will actually help me. The fire of the trials and tribulations of life, will open me up to teach me new things, not destroy me. I don't seek out fire, but I trust that when it comes my way it will open me up to show me more about myself, my friends, my family, and God. I will welcome life's challenges, knowing that in the end they will make me a better person, not a bitter person.
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