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!

After eight hours in the hospital Emergency Department, "Ken and I went home and crawled into bed. It had been an exhausting and frightening six hours for Ken, and eight hours for me. The question of whether I was going to acquire another diagnosis loomed over me, but I was too tired not to sleep.

"Thursday morning arrived too soon. At 8:00 am my cell phone rang, followed by the sound of someone leaving me a voice message. The ophthalmologist's office was following up on the events of the day before. I rolled over in bed and slept another hour. Later, after following my usual morning routine, I picked up the phone and scheduled two appointments, then canceled a routine dental visit I'd scheduled weeks ago. Clean teeth could wait a few more days!

"The first appointment of the day was at the neurosurgeon's hospital clinic office to meet with Stephanie, the certified nurse practitioner who had followed my case from my first brain surgery. She was ready with the magnetic device that programs the valve on my brain shunt, changing the pressure setting at which the valve is set to open. She applied a small amount of gel to the area on my head where the valve is located. Then she gently applied the programming apparatus to that area, holding it steadily in place for, maybe, one minute. This painless procedure is completely non-invasive, and only requires removing the gel from my hair when we're finished. The comfortable setting varies from person to person, but is always within a specific range. For some patients, she sets the valve just prior to surgery and never needs to change it again. In more sensitive patients, like me, she may have to tweak the setting in order to provide maximum comfort.

"I left the clinic in a good mood, thankful that one more loose end was tied. As I drove up in front of my house, I saw a Cooper's Hawk tearing at his kill, on the ground in our yard. Having striking coloration, Cooper's are handsome and powerful, yet compact, raptors. A family of them has remained in our neighborhood for several years, but this was the first time I'd seen one munching his lunch in my yard. I watched from my car until something scared him off. I wanted to see what his kill was, so looked intently at the area as I walked past. Only feathers remained of the bird he'd eaten, probably a House Sparrow.

"I ate my lunch quickly, so I could jump into the car again to drive my reliable, old Saturn to my second appointment. This one would be less comfortable for me. The ophthalmologist wanted to complete a few more tests in his clinic, in order to finalize my diagnosis. Particularly, he wanted to check the field of vision in my affected eye. We had discussed two of the diagnostic possibilities the night before. The first was a serious one: arteritic anterior ischemic optic neuropathy, or AION. This was part of a vascular disease that could effect my whole body and cause blindness. The second possibility and the one he finally chose was non-arteritic anterior ischemic optic neuropathy or NAION. Even he could not say that ten times fast! In essence, my left optic nerve had experienced an ischemic event, or stroke: the blood flow to it had been briefly cut off for an unknown reason, likely having nothing to do with hydrocephalus, but possibly the result of my sleep apnea. The doctor said I needed to allow it time to heal, but that it may not heal completely, and it may happen again. Another diagnosis to add to my ever-growing list.

"I usually went straight home after an encounter such as this one, to research the items from my discussion with my doctor, in order to understand my condition better. This time, however, I canceled my plans for the rest of the day and took a brisk walk with my neighbor friend. A brisk walk is good for relieving stress when paddling a canoe is not available!"

From The Lakes In My Head: Paddling An Unexplored Wilderness

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. 

While sitting in front of my "Happy Lite" one Minnesota morning in November, my eighteen month old orange cat Mango, politely asked to be on my lap. She tentatively stepped on to my leg, feeling gently whether or not I would accept her presence on my lap. Ken and I had just been discussing whether cats enjoy the full-spectrum lamp for its light or for its warmth. He was not convinced that a cat would seek out the light for any other reason beside its warmth.

My thought was that cats, being mammals, probably enjoyed the full spectrum of sunlight for some of the same reasons we humans do, including the need for sunlight to activate vitamins and hormones that help us have a pleasant mood. I haven't read any studies on the subject of cats' need for sun, so I don't know the truth. It's only a hypothesis, but I think it's reasonable.

After Ken left the room, Mango settled on to my lap for her morning snooze. As she stretched and sought a comfortable position on her side, she pushed her back against my arm, her paws pushing against my other arm. Eventually, I needed to move my arms, but I didn't want to disturb her sleep. I carefully pulled a folded blanket over to replace the arm she was leaning her back against. She tried out the blanket, but it just wasn't the same as my hand and arm supporting her back, neck and head. After a few minutes, she got up and rotated her body so she was leaning her back against my stomach. As long as I didn't move my legs, she stayed that way and slept contentedly. Her breathing became slow and regular as she warmed my legs with her body curled in a ball.

We all need each other, though we don't always understand why. Warmth, light, comfort, support, a sound board for thoughts, or a push in the right direction are necessary for us to survive in the world. We can't do it alone. We are social animals that can only live so long without another. Some days we need to be surrounded by a friend or two or three. No need to apologize for support.

I am here for you, you are here for me. We need each other.

"Part of the problem with the word disabilities is that it immediately suggests an inability to see or hear or walk or do other things that many of us take for granted. But what of people who can't feel? Or talk about their feelings? Or manage their feelings in constructive ways? What of people who aren't able to form close and strong relationships? And people who cannot find fulfillment in their lives, or those who have lost hope, who live in disappointment and bitterness and find in life no joy, no love? These, it seems to me, are the real disabilities." --from The World According To Mr. Rogers: Important Things To Remember, page 25.

There is much discussion about the use of the term "disabled" these days. Some people like the term, some don't. Some use other phrases instead, like "differently-abled". Whatever its weaknesses are, the term is one we hear daily. One of the reasons I like this quote from Fred Rogers is that he points out that disabilities can be hidden from sight. Mine is a cognitive disability. I have two complete arms, two complete legs with feet, I don't walk with a brace or use a wheel chair. By looking at me, no one would know that I am frequently forgetful and struggle with depression. No one would know I have a device in my brain to divert fluid to my abdomen. My forgetfulness keeps me from doing things like working a regular job. When I forget that I'm forgetful I make mistakes that could endanger someone's life if I were working in the medical field as I used to. There are few jobs that don't require us to have a good memory.

Yet, just as Mr. Rogers points out, people all around me could be disabled, too, and I might not know it. Some are not in touch with their feelings. Some feel, but never show their hurt, anger, or fear to anyone, even close friends. Some become so afraid and angry that they pick up a weapon and try to rid the world of the people they are afraid of. Some live unhappily with no real friends. Some have lost hope of ever having a meaningful job and are bitter. These "disabled" folks are all around us, hidden in plain sight.

You might be able to bring tremendous joy to someone today simply by smiling when you see them. When you can, take time to ask, "How are you?" and listen carefully to their answer. The next time a passerby compliments you on your outfit, instead of thinking, Good grief, I don't even know that person... respond out loud with, "Thank you! I like it, too!" No matter what our physical or emotional disability may be, we can brighten others' days. Sometimes that single comment may be the one event in that person's day that prevents him or her from committing murder or suicide. I'm not making this up. It really does happen.

Bring joy to someone else's life today. Make a difference in his or her day. What a gift we have been given to bring joy to others!

We have two new furred friends in our home these days. Heidi passed away peacefully in my arms, a well-lived elderly feline, during the summer of 2017. Alec the Cockatiel passed away with no apparent suffering in February of 2018. He, too, was likely an elderly bird.

Well aware of my love for animals, my family encouraged me to look for more critters to adopt. Though I enjoy many species of animals, including reptiles and amphibians, I felt my choice had to be one that Ken also was comfortable with. We looked online at Feline Rescue, an organization that specializes in finding homes for cats. We searched through their photographs and fell in love with a litter of orange tabbies that needed homes. It is unusual to see a whole litter of orange tabbies; the genes that produce orange, black and white coloration tend to be found together, so it would be more common to see, say, a litter with two calicos, two tortoiseshells and two tabbies. Orange or red coloration is linked to the X chromosome in cats, though it is more common to see male orange cats than female orange cats. That may be because females are XX and males are XY, so other colors wouldn't mask the orange in males. In this particular litter, there were two deep orange tabbies and two lighter, more buff (or cream, or dilute) tabbies, all with medium length fur and fluffy long tails. We went to the foster family's home to meet the whole litter, eventually settling on adopting two females, one orange and one buff, who seemed to get along well with one another. By the time we brought them to their new home with us they had been spayed and vaccinated.

Have you ever tried naming your pets? Have you noticed how we each choose names in different ways? My husband, Ken, has always liked using human names. We've had cats named Kaci, Matthew, Leonardo, Gretchen and Heidi. Our dog was named after one of Ken's relatives, Lindy. Alec the cockatiel was named after a human actor. I, on the other hand, also enjoy naming pets with descriptive adjectives, like Smoky for a grey cat. Shortly after we were married, our very first cat became Izzie, named after a character in the “Roots” TV series. The cat my college roommate and I took care of was named Smog—a grey cat that didn't seem to fit the name Smoky. I put my proverbial foot down and insisted our orange and buff females be named with descriptive adjectives. So, we assembled a list of ideas. Tangerine, Mango, Sunny, Melonie, Ginger, Marmelade. One day we laughed when Ken attempted to walk down the basement stairs with one of the kittens walking around and between his feet. “We should call her Squash,” he said dryly. I laughed and added the word to my growing list of potential names. Finally, we agreed upon Mango for the darker orange kitty and Butternut for the buff kitty. As in squash.

Mango and Butternut each have different personalities. So far, we've noticed that Mango is a go-getter, one who acts first and thinks later. She'll attack anything that moves, catches a ball well, and is attracted to things that squeak. Butternut, on the other hand, looks for movement patterns. She'll intently watch something go back and forth for several minutes before she finally decides to pounce on it. Her aim is excellent, but she's not fast. Will she ever learn how to jump up without knocking something down? I suspect not; she tends to be a bit clumsy, for a cat. Butternut prefers toys that are red or stringy. Science may argue with me on that one. It is said that cats see the world in blues and grays, not being able to distinguish red, orange, yellow or green. Perhaps theirs is a texture issue: they seem to like soft fluffy toys versus hard bouncy ones. Both kitties enjoy the smallest size of pom-poms, the ones that fit nicely between their lips, Butternut the sparkly ones, Mango the plain ones. Neither cat meows; they sort of coo or whimper. It's a tiny, high-pitched, delicate sound that doesn't fit their size. Butternut likes to do this at three o'clock in the morning, while jumping up to surfaces on which she doesn't belong. Is she trying to get our attention? Is she looking for something? Is she looking for Mango?  We've taken to getting up and closing the door on them so we can continue sleeping all night.

One of the activities that has helped me live with hydrocephalus is prayer. Has someone ever told you to “pray about it” and you wondered why you shouldn't just do something about it?

Sometimes we think that prayer isn't really anything but paying lip service to a custom. We think that praying about something important is not as useful as doing something concrete about it. In Matthew 7:7 Jesus says, “Ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you.” (NASB) Jesus taught his disciples how to pray when they asked him to do so. He used verbs, action words, as examples of how to pray.

When you knock on a door, the owner of the door comes to your aid and opens the door to speak to you or let you in. When you ask, you are humbling yourself, recognizing your need and expressing the need to someone who can help you fill that need. A seeking person is actively looking for something or someone to assist her, whether it be by giving her knowledge or helping her lift a heavy load.

Jesus made it clear by how he lived his life that prayer is far more than just a nice custom. God wants us to actively bring our needs, desires, thoughts and feelings to him in prayer because he answers prayer. God is the god of action. If we ask, seek, and knock at God's door God will answer and help us find that which we seek. God may motivate us to do something we know would be helpful, but are reluctant to do. God may give us the humility to accept a friend's offer to assist, a friend who has been praying to know who might need God's love today. God will answer your prayer by answering his!

Prayer and action go hand in hand, as do trust and motivation. When we trust, we move forward confidently and with energy. We are motivated. 

God is faithful. God will not fail us. God is worthy of our trust.

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!

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."

Next week: a biology lesson that, along with this geography lesson, will answer the question, "What is hydrocephalus?" Stay tuned!