Category: dying

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. 

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

No One Wants An Abortion

No one wants to have an abortion. Let’s just start there. It’s not something a woman does because she wants to have a surgery that will leave her with memories and questions for the rest of her life. She doesn’t want to always be able to look back and ask herself would it have been a boy or girl? Who would it have been? What would she have been like as a mother to that being?

The right to have an abortion is perhaps one of the greatest signs of motherhood. Afterall, the mother’s role is to do the best possible for the being in her womb. Sometimes the best and the hardest is to protect that being from a life of pain and want. Sometimes the best and the hardest is to protect them from abuse or from severe health conditions that would make living impossible. Sometimes the best and the hardest is to protect them from entering a world in which they will be treated with hatred by the people who are supposed to love them. There are so many reasons that a woman may choose to have an abortion. None are so simple as she wants one. All are about doing the best that she can for the being that grows inside her and for herself as well. The mother’s relationship with herself, with the world, and with her understanding of God will all change, but she will have done what she needed to do to care for herself and for the being she carried.

How can the court be so cruel to these women and unborn beings? Without legal abortions these women will not be able to save the beings in their wombs from lives of ongoing pain. If they try they will risk their own lives. What will we have won to lose both the mother and the fetus? Maybe it is these women who would risk their lives for the well-being of someone who they will never know who should be in charge instead of these judges who are willing to force them to put their lives at risk.

Thinking About an Old Mentor

I met him 23 years ago in a McDonald’s in East Tennessee. I was a twenty-something community organizer embarking on my first “real job” after college. I’d only just arrived in Tennessee from Wisconsin a few weeks before full of brilliant ideas and energy, ready to save the world. He was a middle-aged factory worker who’d grown up and lived his whole life in Appalachia. My young and oh so wise self was sure I’d have so much to teach him from my infinite stores of knowledge. It didn’t take long for me to see just how wrong I was.

My co-organizer Gil and I had just arrived. Gil would be introducing me and starting to hand over the work of coordinating the strip-mining issues committee. We were meeting Landon Medley, the committee chair, at McDonald’s that day. Gil and I had spent a lot of time discussing the Fall Creek Falls campaign, a major campaign to protect more than 60,000 acres of land surround the tallest waterfall east of the Rocky Mountains from strip-mining. He’d told me a great deal about the strategy so far and where it was headed as well as about each of the committee members and allies involved. He told me quite a bit about Landon and who he was. I don’t remember if he ever mentioned the crutches though. I remember not quite knowing what to do when this short middle-aged man using Loftstrand crutches walked toward us and Gil greeted him. Should I help him? How could I assist?

It was only a moment. Then as quickly as those crutches were set aside, I began to learn. Landon was one of the children of the 1940’s in Appalachia who survived polio. While the illness left him with a disability that impacted his life and health, it never stopped him and maybe even made him stronger. He had a love for his Appalachian home that ran deep in his soul. I still have a painting on my bookshelf that he made for me of those beautiful mountains. There is no place on earth like it. He was a gifted historian and author. He was also a great leader of the fight to protect his mountain homeland from multinational mining corporations and others who have sought to destroy it in so many ways. It was a gift to call him my friend and mentor.

Today I learned that because he’d had polio as a child he wasn’t able to receive the COVID vaccine. A little boy who won the fight against one the most devastating diseases of the 20th century thanks to medical advances and much struggle, lost the fight against COVID. It hurts to think that he didn’t have to lose this struggle. He lost because of all the people who’ve opted not to get vaccinated, who’ve chosen not to wear masks, who’ve taken unnecessary risks, thinking that their actions only impact themselves. We aren’t separate beings. We are connected. I ask that each person who reads this act not only for yourself, but for the love of others. I wish you all wellness and joy. Take good care.

Back from the Break- More Thoughts Today

I was visiting my family last weekend and stopped at the Farmers Market in West Bend, a town in Wisconsin not far from where I grew up. It’s changed a lot since my youth. It’s good to see. First of all, there’s a farmers market. Secondly, there were people there who didn’t look like me, not a lot, but some. That was good to see. Our small towns are so much more when they aren’t those white bread places, soft and squishy without much to them.

I stopped at a little gift shop in hopes of finding a new journal for myself. It’s been a while since I’ve written my blog or my daily journal for myself. A nice journal that welcomes me helps. I found one with flowers and a bicycle on the cover, nice shades of blue and green. I haven’t been writing every day, but I am starting to open it and free write again.

It always amazes me what thoughts start to percolate when I write. This morning I was out at Indian Lake with my dog, Buddy. I was sitting with my journal while he explored the field and did a little wading in the water. I found myself thinking about where we’re at today. Here we are in this time of pandemic, drought, racial/social/economic unrest, huge wildfires, and all the rest. I can’t help but wonder if we are coming to the time of the seventh fire. Are we coming to the end of this chapter of life or is this simply just another round of challenges the same as faced by generations before us that only seem larger than life because we’re the generation facing them?

What power do we have, if any, to determine our direction? I have to believe that there is some power, that we can make choices that will mold the society for the time to come. I was thinking today too of the world I grew up in and the stories that I was told. I grew up in a home where the bible was much more than a table decoration. I remember sitting in bible studies that my mom hosted in our living room. I recall when Sr. Patricia used to bring communion to our house when Mom was too sick to go to church. I’ll admit much of my beliefs have evolved and I haven’t attended mass for years, but I still like that Jesus guy that we talked about back then.

No, I’m not going to encourage anyone to follow Jesus. Follow whoever you want or just go your own way. What I’m wondering about, what my writing and thinking is drawing out of me as I think about this time of so many challenges that we’ve been going through is the disparity between that man of love and caring and who the stories said gave all of himself that we might live and the followers who’ve chosen themselves over all the gifts he shared and have refused to care enough to do such simple small things like masks and vaccination or a list of other little things of showing care and love for their fellow beings. I simply don’t understand. It seems to me like what I once knew as sin and now might just call sadness.