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

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

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.