Category: mental health

Looking at Life’s Work

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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

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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

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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. 

Thoughts on How to Stop the Violence

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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

Riding the Bus in Madison

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I gave up my driver’s license two months ago after I had a seizure on my way home from the grocery store. Since then I’ve been using my old license just for identification until getting settled in my new apartment. I moved at the beginning of the month and today I was finally able to head to the DMV to replace the no longer valid license with a new state ID card.

The exercise of getting a state ID was a good reminder of what I have to be thankful for and a great look at how class and ability impact our lives. My seizure in August meant leaving the small town where I was living to return to Madison. Madison has public transportation. It is, at least in theory, an accessible community in which to live.

My trip to the DMV today was via the bus. Taking a cab could have been an option, but it cost more than I cared to spend for a trip to just get a new ID. It began by needing to schedule my day according to when the best route options were available. Then waiting at the stop to ride the half hour on what would have been a ten minute car trip. Along the trip I read the information about how the busses are being cleaned during COVID and the rules riders need to follow and pondered how much each ride increased my risk of disease.

Thanks to being given the wrong form and a mildly confused elderly man in the line front of me, my visit to the DMV took a bit longer than expected. That meant walking out the door just as the ideal bus to take home pulled away. So, I walked about a half mile to catch another bus. My trip that would have taken probably about an hour or maybe less if I were driving took about three hours on the bus.

I don’t ride the bus often, but when I do it is clear who the busses serve. The vast majority of people I see are BIPOC, low income, homeless, students, and people with mental health issues. If my experience today is typical and it takes three times as long to complete a task via bus or even just twice as long as it does for someone using a car, I wonder how we can expect people to get ahead? How does someone win when a bus that is a few minutes late makes you late for your transfer or your job? How do you hold control in your own life when you are living by the bus schedule and others set their own times?

The busses are a place where social and environmental justice come together. There are many who care about climate change and clean water and clean air and all those things. Many who know that public transportation is environmentally more sound than private cars, but yet they don’t ride. Why not? I suspect a few things, first there is that issue of timeliness, being able to get to the places they want to go, and get tasks done and secondly there is the issue of the other riders of the bus– those who are BIPC, low income, homeless, and those with mental health issues. Could it be possible if bus service were improved and these individuals were able to begin to bridge the gap, able to access the services they need, get to work, school, and able to run their errands in a more timely way that the busses would become a more welcoming service for all while also making life just a bit better for those who need it? Sometimes we just need to draw the connections. Make it possible for folks to do the work they need to do and life gets better for us all.

Just some ponderings from today’s and a couple of other recent trips on Madison’s busses. What do others think?

New Life

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The pandemic has provided its challenges and gifts. A lot of people seem to be looking at this past year as having been all about struggle and loss. A year that we’ll look back on with horror or at least deep sadness. I’m not so sure, at least not for myself.

Sure, there has been sadness. My Dad died last July. He was 92 years old. I miss him. I’ll always miss him. But, sadness at the passing of someone who is elderly and in the grips of dementia is always mixed. I will miss him, but I am also joyful that he could let go, move on, and no longer be held by the pain and fear that had become his life. Yeah, I got laid off. But, I got laid off from a job in Minnesota at a really unhealthy workplace where rumors, put downs, lying, and just generally disrespectful behaviors were the norm and wound up through a series of events finding myself working for a good friend on an incredible creative project and back home in Wisconsin.

It’s been a year for being open to possibilities. Last January a severe allergic reaction to a new medication for my epilepsy led to my doctor and I pursuing options beyond medications. In July I found myself at Mayo in the epilepsy monitoring unit. I started my visit on the anniversary of my Mom’s passing. I ended it a week later just after my Dad died by making the decision to honor them both by getting a vagus nerve stimulator implanted. I came back a week later and had the little device that is changing my life implanted close to my heart, reminding me of them. Now, it sends a stimulus through my vagus nerve every three minutes and, along with my medication, is controlling my seizures and making life normal again. My energy is back. It’s been months since I’ve woken up in the morning to a headache and sore tongue, and best of all my doctors and the state of Wisconsin agree that it’s safe for me to drive and live with the independence that a car provides when one lives in a small town.

A lot of people have gone on about boredom and loneliness because of the pandemic and I confess that I’ve had some moments of wanting to get out too, but mostly I have to admit I’ve appreciated this time alone. I’ve been reminded of the joy in slowness and the importance of creative space. I took guitar lesson for awhile, long enough to give me some basics to work with and to continue to teach myself. I’ve started to work on becoming an author of children’s books. Now that it’s spring I just started doing a little volunteering at Taliesin. I’ve been reading a lot more, continuing to write here, doing a little drawing too. How could I be bored or seeking something else when I am given the opportunity to find the creative space? The world runs us too fast and I am thankful that we’ve slowed down for the moment. It is sad that it took a pandemic to slow us, but I can only hope that we find some lessons about caring for our creative selves from this experience.

It’s not been all bad. It’s been a year for staying home and eating home cooking, a year for being creative, a year for relaxing and getting to know ourselves, a year for embarking on a new stage of life in so many ways. What lessons have we learned? What will we carry forth? What possibilities have we opened ourselves to? What is this new life that we are embarking on as this pandemic, hopefully, begins to draw to a close?

Ikigai

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There is a Japanese concept known as Ikigai or “reason for being” that I was recently introduced to by a dear friend who is providing me guidance as I think through where I might go in my next adventure. It is a bringing together of that which you love, what you are good at, what the world needs, and what you can be paid to do.

Find your Ikigai.

I’ve been delving into this idea, seeking my Ikigai for some weeks now. I remain confused by exactly what is the difference between what the world needs and what I might be paid for. I don’t know if this is a result of having spent too many years in low wage sectors of the work force or being overly influenced by the realities of a capitalist society. But, in either case, or maybe some combination of both, I tend to believe that anything the world needs is something that one might be paid for. I suppose the question then becomes if one could be paid enough to live on, but as I said, I’ve worked a long time in low wage sectors of the workforce. My pay expectations have risen a great deal since I first began, but monetary riches aren’t really on my radar at all. These days I believe in a living wage, good benefits, and a welcoming work place. When I first began all I sought was a welcoming work place, the other two were just added plusses.

Writing my lists of loves and things that I’m good at brought back many memories. So many were filled with songs and stories, art and laughter. They were memories of caring times, whether those caring times showed themselves in miles of hiking for peace or to protect the water or raise funds for raptor rehabilitation or rocking babies or teaching adults or standing on the strike line. They were creative times filled with ideas showing themselves in a myriad of different ways. Some were sung out. Some acted. Others written in poetry or prose or simply spoken in stories.

This is what I have learned or maybe was just reminded of. I thrive on the creative, both that of others and my own. It simply feeds me. I value the opportunity to care, but care alone can drain me. The two together help me maintain a balance. As I seek my path forward I seek the creative and the caring.

I wish you all the best as you move forward and hope that we might all find our Ikigai

Restart

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I wonder what it is about January that makes it such a challenge? There seems to be something maybe in the air or in my being or maybe just in the cold that makes my body reject the entire month. This year it seems the entire country is having to scrape its way out of 2020 to make an attempt to start again and we’ve not quite made it there yet.

I often look back at my memories on Facebook and I’ve learned from this practice that somewhere right around Christmas or shortly after is often time for a seizure. January is time for a nice head cold that’s bad enough to put me in bed for a few days. It’s also a time for dreams and nightmares. A few years ago I also threw in the excitement of appendicitis. Last year I spent New Year’s at the Epilepsy Monitoring Unit at the Mayo Clinic hoping for seizures and asking for cold medicine.

This year I’m laying in bed waiting for my COVID test results and hoping it’s just another head cold and pondering the meanings of my most recent nightmares. I don’t normally have a lot of bad dreams, but I’ve had three in the past week. I suspect it’s both the powers of January and the changes in my life once again.

I’d thought I’d found the perfect job a few months back, but it became clear pretty quickly that the organization wasn’t ready for staff yet and that there were some people in leadership holding views that I believe to be quite harmful especially when mentoring children. I love mentoring, but not at the cost of any child. So, I had to leave. I was extremely lucky to land on my feet. Some friends of mine run The Memory Project and offered me a role which allowed me to leave the group that I was with.

So, after two intense dreams that might be called nightmares, the first of which I found myself I found myself at a circus with a tiger and a panther sniffing at my feet as I sat on a bench unable to move and the second of which I found myself again unable to move in my bed with an intruder coming in and about to rape me, I made the decision to quit my last job and start my new one.

The circus dream was an interesting one. The ringmaster was there and he told me that I didn’t have to fear the tiger and the panther. He told me that they were mine, wouldn’t hurt me, and that I had the power to move if I chose. It was interesting doing a bit of research later to find that the panther and tiger tend to be symbols of feminine power, creativity, strength, and positive change.

The rape dream was another recognition of my own choices and power. As the perpetrator attempted to attack me, my inner being assured me that this wasn’t real, told me that I had the power to move. It took great strength, as if I were breaking handcuffs holding my wrists, but I moved my arms and I awoke and was safe again.

Sometimes dreams tell us a lot. I decided I had the strength to take the leap into a new world. For the next six months or so, I’ll be sorting student art work, seeking out some freelance writing, working on a book, and deciding what I want to do next as my role with the Memory Project is just short term.

Still, my dreams aren’t gone. There’s still something figuring itself out. In last night’s dream, an intruder had again broken into the house. This time a friend told me she found my dog Buddy locked in the bathroom with a loaded handgun and an open window. She was worried that the intruder was still on the premises. The house filled with neighbors, most of whom I didn’t know as I tried to call the police. Buddy wasn’t hurt. I lost track of him for a few moments and was worried he might be, but then I saw him playing happily in the growing crowd.

I woke puzzled, but realized that in my current rental it would be impossible to lock poor Buddy in the bathroom with a loaded handgun since one of my bathroom doors is actually a shower curtain. Ah, the wonders of rental living. But, it does help me recognize the impossibility of the dream and go with Buddy’s joyous innocence approach instead.

With that, I will lay here and rest a bit more, build up my energy and get ready to leap into the next new adventure with faith that the tiger and panther and Buddy will all celebrate with me this new chapter in life with joy, fun, love, creativity, and all else it offers. Take good care and stay well my friends!