Standing on Top of the World

The trip to Mount Pilatus wasn’t a planned one. Our group was supposed to just have an afternoon off to relax and mill around the town of Lucerne, Switzerland. Spending the afternoon wandering about Lucerne would have been great, just sitting in a coffeeshop somewhere … Continue reading Standing on Top of the World

Blue Eyes Flashing and other words

I’ve been continuing to face an ongoing struggle with writer’s block. I strongly suspect a sort of fear of writing, a fear of what I might learn if I go to deep, but I have no choice. There are words that I need to share and they’ll be there inside me until I let them out. So, I am continuing to work on letting them out. Today I’m going back through old journals and finding bits and pieces to revise and share more publicly. The first piece has no title yet, but maybe I’ll call it Boots. It was written on 7-6-2000 on the shores of Lake Superior while on a walk around the big lake to protect the waters.

I am standing here

on a precipice

looking out

afraid to fly

wanting so badly to walk away

to not

defend

my people

or

my place

but my boots

will not walk backward

like the staff

my being is feathered

and I will

fly

Another story that I found came from a few years earlier. It is called Blue Eyes Flashing and is dedicated to my great aunt Sr. Christine Mondloch. Sr. Christine was born in 1898. She served as a School Sister of Notre Dame, teaching school for many years before retiring. She lived out her final years in Elm Grove, Wisconsin in a tiny blue room in her convent. She was an inspiration to me. She found such joy and meaning in the simplest life.

Blue Eyes Flashing

(a revision of the 3-4-96 version dedicated to Sr. Christine Mondloch who walked on 2-24-96)

Blue eyes flashing

From behind the clouds

Not recognizing a brother

Only crying out

In fear

Imagining your smile

Wishing for you the great beyond

Remembering the cardboard cutouts 

Stored away in my parent’s basement

And wondering how the demons

Caught your spirit, stole your soul

All my life you gave me cardboard boxes,

Toothpick flags, and empty suitcases

All your treasures in the world

I think of you of your autobiography

98 years written on one page

I remember the tiny blue room

Charity called your home

I walk the halls and feel your footsteps

In time with mine

Changing One Thing

So, I’ve been trying to get back to my blog after several months away, but it seems I’m facing a mild case of writer’s block. Nothing is coming to mind. It’s just empty. There are no topics to write about there. What to do? Well, since it seems the key component to becoming a successful writer is writing, I just used the wonders of the internet and sought out a writing prompt. The one that drew me today was this. “If you could change one thing in the world, what would you change and why?”

This is actually something I’ve had the chance to ponder quite a bit over the past thirty years or so as someone who’s worked in social and environmental justice. I’ve had the good fortune to work with a lot of good people along the way. I’m thankful to say that I’ve found a few good mentors too or maybe they’ve found me or in any case we’ve found each other. There’s something those mentors hold in common. They know interconnectedness. They understand what happens to one impacts us all.

Historically, many, maybe once all, cultures understood that we are connected both to our fellow humans and to everyone and everything else, animate and inanimate, but just in really very recent years (only a few generations) we’ve forgotten and we’re getting sick. We are part of the body of the world. We can’t just care solely for the hand or the foot without the other parts of the body suffering. It makes no sense to hate a part of the body for its actions or its disease. Instead, when we recognize that we are all a connected body we heal each other.

That’s what I would seek, just for us to recognize our interconnectedness, with each other a people and with world that we inhabit and to begin to live that way again.

Now, I am wondering– What would you change?

Looking at Life’s Work

I was interviewing for a new job yesterday and was asked a question that while not totally unheard of was one I’d not heard often in job interviews that I’ve done either as the interviewer or the interviewee. I was asked how I identify myself or what I enjoy outside of my work life. What a wonderful question! Thank you for letting me know that you, as an employer, want to know me as a person that you value my work/life balance.

I grew up on a farm. My parents both grew up on farms as did their parents and their parents before them. For years I used that as a reason or maybe an excuse to devote my life to my work, putting in far more hours and more brain power than I was paid for. I would talk about how I grew up learning that farming wasn’t a job it was life’s work, and that’s what my work was as well.

Looking back now, I’m questioning what that “life’s work” means. Sure there is a lot about the work that simply needs to get done when it needs to get done no matter what. When the cows get out, you need to get them back in. There are no choices there. I think I misrepresented the 24/7 nature of “life’s work” types of jobs though. My Mom and Dad worked a lot, us kids spent our time helping out too. But, we also went swimming, watched tv together, took vacations, did all the things that others around us did that didn’t have “life’s work” kinds of jobs. The big difference between a job and life’s work isn’t the level of commitment, but the level of connection. For some farming is a job, a really hard job, for others it is life’s work. For me social justice is my life’s work.

I am thankful for this look at life’s work. It gives me a greater permission to take good care of myself as I move forward, continuing to do what can be very difficult and emotionally draining work. Today, I’m encouraging each of us whose had that great gift of being able to do the work that we feel called to, that we are connected to, that “life’s work” to celebrate that calling by caring for ourselves so that we might continue.

The Power of Paper and Pen

The key piece of becoming an author is writing, or so I am told. So, here I am writing. There are ideas that seem to be stuck somewhere deep in the muck of my brain and maybe even deeper in the mush of my heart and soul, but they are there- stuck. Meanwhile, I am digging through the layers and laying out what comes out in hopes that some of it finds value in the light of the page.

It’s a good tool to understand and care for myself. I stepped away from my blog for a few months this year as I started a new job. The role that I took on in my workplace was a tough one, a young non-profit organization in a period of rapid growth, I was the first staff person. The job was really one for at least two people, but I took it on in my spirit of adventure with a bit of hero thrown in. I set down my blog and my drawing pencils and pretty quickly found my number of seizures increasing, my anxiety rising, and my self-esteem dropping in a really difficult position with an organization that has a good dream, but doesn’t have a structure to support that dream yet.

Thankfully, over the years I’ve learned enough about myself to also recognize when I needed to take the risk to step away. I made the big decision to leave that job that had me struggling away for 50-60 hours a week trying to build an organization without team support. I’m transitioning out now and in the process of finding my next role. That process of finding the next role, not knowing what is coming up is in some way stressful, but it feels so much better. I’ve picked up my blog again. I’ve picked up my pencils. Last night I spent several hours working on a drawing from a dream the night before. I found myself fully focused, thinking about nothing, but shading and how the design was forming without being pushed by me. It’s not a question of me creating the picture, but of me asking the picture where the shading belongs, where I ought to put the pencil to fill in what needs to be there. It is simply working with the paper rather than trying to tell the paper what to do.

These things are a beautiful meditative practice for me, whether writing or drawing or even painting. They are important to my well-being to allow these things to just process through me. I never cease to be amazed at what comes out. I hope that you can find your meditation today, allow your art to process through and learn a bit more of who you are. Wishing you a joyful day.

All in My Head– A Story of Adult Onset Epilepsy

It’s been some time since I’ve written in my blog. It seems time to start again, but it’s a challenge to decide where to start to pick up the speed and reengage followers. So, I’m pulling out a few old pieces that I’ve written, but maybe never posted. Here’s where we begin, with a story from three years ago……..

The bed was surrounded when I awoke.  They looked kind and seemed concerned, not angry.  Still, it’s a bit disturbing to wake up and find one’s bed surrounded by people in uniform.  The good looking fellow standing by my head began asking me questions.  What was my name?  Who was president? What day was it?  Even in my confused state I saw this fellow was quite attractive and I felt I should make a good impression.  I tried my best for witty answers, but the words wouldn’t quite form.  All I could manage was a garble.  It was as if my brain and mouth weren’t fully connected.  Nothing was quite making sense.  Where was I?  Who were these people and why were they here? Why did everything feel so unreal?

My new roommate, Jane, had just moved in a few days before.  We’d been acquaintances for a while, traveled in similar circles, but it was only now that we were starting to get to know each other in any real way.  We’d just spent a nice evening visiting, swapping stories, and talking about what was important to each of us when sharing a house.  At the end of a pleasant visit, I went to bed just like any other night.  A few minutes later Jane began to hear noises from my room.  It seemed strange, so Jane called out to ask if everything was okay.  When I didn’t respond she came to my room to find me groaning and twitching, foaming at the mouth.  I was having a seizure.  

The EMTs continued to ask questions and slowly my brain and body began to reconnect.  Eventually, they asked if I would be able to walk, with support, to the ambulance.  We lived on the second floor and carrying me down the narrow staircase was a challenge they wanted to avoid if possible.  I was sure that I could.  I got up leaning on my new helpers and wandered through the apartment I’d lived in for over a year and didn’t recognize.  Seeing Jane I thought to myself, “I wonder who that is? She looks nice.” 

I’d begun having headaches in my 20’s, some two decades earlier.  I’d wake up barely able to function.  The nausea and squeezing pain would simply be too much.  I couldn’t eat.  Looking at a computer screen or television would be out of the question.  My mind couldn’t focus to allow me to read or do much else.  So, on those days all I could do was to call in sick, go back to bed, and sleep the day away.  The headaches would take all my energy.  I’d sometimes sleep the whole day only to sleep all night too.  It would take a few days before my energy would return.  My head and stomach would ache for sometimes a full week without reprieve. 

Since I was incapable of doing much of anything on days with headaches and just wanted to hide away from all humanity, it was impossible to see a doctor during an event.  The headache events didn’t happen often, usually only every few months, but as the years went by they became more frequent probably as much as monthly.  I needed an answer.  I read. I watched videos and documentaries.  I studied everything that I could find.  I went to doctors, but could only visit when I felt well and this did me no good.  They listened to my stories, ran tests, and found no answers.  I took to calling my headaches migraines and just hoping they’d stop some day.  

That first observed seizure took me to the ER and started my long and varied relationship with neurologists.  It didn’t give me a confirmed diagnosis of epilepsy at least not on its own.  It did, however, give me a good idea of what my headaches over the past twenty years really were. It also concerned the neurologist who saw me enough to encourage me to start taking medication.  

Dry mouth, heartburn, nausea, bone loss, weight gain, weight loss, memory loss, trouble with words, difficulty walking, irregular heartbeat, loss of consciousness, aggression, seizures, depression, and on and on.  This is just a partial list of the side effects to most anticonvulsants.  Typically, once a person begins taking anticonvulsants they are on a lifetime journey of taking them.  Seizures are an invisible disability that can be controlled, but has no promise of being cured.  

One seizure, that couldn’t mean that I needed to embark on a lifetime of these side effects could it? It seemed that the treatment could be far worse than the disability itself.  How could all these horrible things be considered getting well?  I wasn’t ready to go down that path.  I had to find another answer.  There had to be another choice.  

Diet changes, meditation, essential oils, supplements, massage, exercise, acupuncture.  I kept reading. I kept researching. I dabbled in everything I could find.  A lot of things helped, nothing was the answer.  I still shook and not only did I shake, I stepped out of myself.  Seizures aren’t just the ones that we see in the movies where people fall to the floor and thrash about.  There are at least six different types of seizures.  It would be rare for me to have a tonic-clonic seizure that the media has made so popular.   

Instead one day when I was walking the dog, suddenly everything went dark.  I couldn’t see where I was. I heard something in my head. Was it voices?  Was it just sounds?  I don’t know, but I was in another world for just that moment.  I knew where I was in this world.  I knew where to put my feet as I walked.  I didn’t stumble.  I didn’t fall.  But, I was in another world too. I had seized.  This was to become a part of my new normal.  

Months passed.  I was unemployed. My job of nearly a decade had ended when the organization closed.  My options for healthcare were limited with state health insurance that covered very little and left me with medical bills that I couldn’t pay.  Still, I kept doing whatever I could, getting acupuncture or seeing a chiropractor when I could afford it, trying to eat well, take supplements, meditate, exercise, and whatever else I could.  Things didn’t seem to be getting any worse, but there didn’t seem to be any improvement either.  

Then came Christmas. I was visiting family when the seizure came.  It was the first, and as far as I know, only time I ever had a full fledged tonic-clonic seizure during my waking hours.  I didn’t know it, but apparently my body knew something was coming.  Moments before the seizure started I slipped out of the chair where I had been sitting and moved to the floor to sit.  I woke up in the ER again.  This time I woke to find my older brother with a look on his face that I hadn’t seen in more than twenty years.  The last time I had seen that look of sorrow and fear was the day our mother died.  When my consciousness returned he told me how my seizure scared him, how he thought that I was about to die.  He pleaded with me to promise that I would work with my neurologist and take medication.  I couldn’t break his heart.  I made the promise.  

Two-thirds of the people with epilepsy can be successfully treated with anticonvulsants.  The likelihood of success falls with each drug tried.  By the time the patient reaches their fourth medication the likelihood of success is two to three percent.  I’m on medication number four right now.  

I’d never had an allergic reaction to a medication in my life.  That was until my neurologists and I started trying to treat my epilepsy.  The first three medications gave me rashes, made me quiver, just generally made life awful.  Medication number four wasn’t much better, but didn’t actually cause anything that fit within the realm of an allergic reaction.  Still for years I lost words, found myself unable to count on my memory, grew frustrated and depressed with my inability to write anymore, my inability to remember names, my loss of my former self.  Perhaps the saddest was the day I had to give up acting.  I’d found so much joy in community theatre, but I could no longer remember my lines.  I had to set it down.  

It’s been about seven years now since Jane saw that seizure.  Epilepsy is still a huge part of my life.  It impacts my every day in challenging ways and in good ways too.  

There have been several times that I’ve had to give up driving.  The laws around driving with epilepsy are different in every state.  Some people choose not to ever drive again.  Some of us return to driving when we are able.  For myself, giving up my car opened the door to friendships as I depend on people to help me to get where I need to go.  It encouraged me to take time for myself, enjoying being outdoors and celebrating my neighborhood as I walk most everywhere that I need to go in my small town.  

Four years ago I started to make truly healthy food choices.  I began with giving up caffeine on the advice of my neurologist.  Before then I had been a big fan of coke products, drinking at least one or two every day. Cutting caffeine cleared my head in a way that I’ve never looked back on. But three years ago was the really big leap. I’d reconnected with an old friend who works in holistic medicine and opted to have my food allergies tested. The test revealed nine foods that cause mild allergic reactions for me.  On the top of that list was cane sugar.  For three years now, I’ve done my best to eliminate my allergens.  Sometimes I fail, but most of the time I succeed.  I’ve lost over forty pounds and gained a new energy.  I’ve learned to limit the processed foods in my diet and to cook real food.  

I don’t like taking medication.  I wish sometimes that I didn’t need to, but until a cure for epilepsy is found I have a disability and I need to use the tools available to me to control it and live my best life possible.  Exercise, meditation, keeping a balance of life and work, finding joy in each day, eating well, celebrating my circle of support, and just treating myself with all the kindness and care that I deserve.  

I’ve learned a lot from these seven years now that I have been able to count myself among those with a disability, but perhaps most importantly I have learned  to study, read, watch documentaries, ask questions. Do everything that you can to learn about the health challenges and disabilities you face, but at the core the most important thing, the thing that will keep you alive, that will keep you going is to just simply recognize yourself as someone who is still worth your own respect, still worth your own caring, still worth your own love.  Our disabilities impact our lives.  They can have an impact daily.  But, they do not define who we are or our level of worthiness.  That’s what moves me forward, to know what is in my brain isn’t in my heart and soul. 

The First Week Going MAD

Tuesday marked the end of my first week on the Modified Atkins Diet for my epilepsy. It’s far too soon to know if the MAD has impacted my seizures at all, but I can say that I have seen some changes and have learned a bit too in this past week.

Before I started this journey I created a list of “MAD Hopes”, 25 hopes and goals that would help me know if I am succeeding or not. These hopes and goals include things related to my epilepsy like seizure freedom and decreasing medication as well as other things related to my overall physical, emotional, and spiritual health. Reviewing my list this morning I can say that I am doing well. I am five pounds closer to my goal weight. I don’t have the bloating that I did before I started. My breathing is better and my athlete’s foot is clearing up. I think I may be starting to sleep a little better. I definitely feel good about my food choices and how they impact the planet and myself. Thus far, the MAD is doing good for me.

It’s not been a perfect trip so far. Each day I check my ketone levels at least once using a urine testing kit. Each day now it seem my ketone levels show up high on the scale. Some days this is not a big deal. Other days it comes with a bit of fatigue and maybe some nausea and stomach discomfort. These are signs of low blood sugar and could indicate significant problems coming. Thankfully, a great lesson I’ve learned this week is one that many people with diabetes have known for years– the amazing healing powers of apple juice. Two tablespoons of juice and I am back within normal ketone levels and fully operational. I am told that my body will likely adjust, my ketones will come into balance, and I won’t be needing apple juice regularly any more.

I’d like to say that the new diet has increased my energy and clarity, but it’s hard to say. My life has been a bit unusual having had a few weeks off looking for my next place of employment. It’s meant a lot more time sitting and typing and hanging out with the dog, not a time that requires a great deal of energy or quick thinking. With luck and some work I will be back in the workplace soon, then we’ll see how the MAD has impacted my clarity and energy. Meanwhile, I am happy with what I am seeing.

Thoughts on How to Stop the Violence

Yesterday, 19 children and 2 adults lost their lives at Robb Elementary in Uvalde, Texas. That means we’re at nearly 250 school shootings since back when Columbine first shocked and terrified us all. Thousands of children and their caregivers and teachers have died. Others have been left behind to struggle with the loss.

Each time another shooting happens the response is much the same. We cry. We mourn. We say this must never happen again. Yet, it happens again. Why?

It happens because there are no easy answers. It happens because the changes needed are needed at many levels; personal, community, political, maybe even spiritual. It happens because the changes require more than the wonderful organizers who are already out there working day and night trying to save the world. The changes require all of us taking action. There are many ways to take action each day. Some listed here may seem obvious and direct. Others may leave you questioning a little. That’s okay. My thoughts here are based on the idea that everything is connected.

  • Tell someone that you love them. If you’ve already told them, tell them again. We all need to hear these words over and over again to hold our souls together and no one wants to say goodbye with these words unsaid.
  • Breathe deeply before you act and then act with the seventh generation in your mind and your heart. Some may ask what this means. The idea of the seventh generation is simple. Imagine a long tunnel. If you look down that tunnel, way down at the other end you’ll see a baby. That baby is the seventh generation, roughly 150 years from now. If you do right by that child, you’ll be doing right for today. Always treat that baby with love and respect.
  • You don’t have to love your enemy, but do recognize that someone loves them and that someone is a valuable person who deserves not to be hurt. Every shooter, every evil politician, every horrible whatever out there has or had someone, their parent, their child, their grandma or grandpa, or maybe a teacher or somebody who cared about them or still cares about them. You don’t have to love the horrible, just know that somebody could see something in them that was good, that was worthy of love and act with that in mind.
  • Recognize the connections. Our mental health is no accident. Good mental health depends on a healthy environment, healthy diet, financial security, and strong social support networks. We each need many things to maintain our stability. Each day we must strive to move toward fulfilling each of these needs for everyone if we are to create a healthy world.
  • Be involved. Find your piece of the action whether it’s working directly on gun safety and stopping school shootings or a hundred different issues. Follow your heart and connect with your community to make the world just a little bit better. It is by the creating of good, healthy communities of many types that we heal and we stop this senseless violence and turn instead to love.

Those are just a few thoughts for the moment. I am sure there are many more. I would love to hear yours. Take good care and wishing you all peace and healing