Category: disability

The Little Girl in the Theater- A Dream of Healing

It’s that time of year again. The time of year for dreams. Winter time brings so many dreams, tells me so many stories that help me understand myself when I take the time to listen and understand myself. It’s a good time to spend a … Continue reading The Little Girl in the Theater- A Dream of Healing

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.

MAD with Epilepsy Day 1

It’s already been a long journey even though I only began yesterday. Yesterday was the first day for me on my Modified Atkins Diet (MAD) for epilepsy. I am already learning.

I met with my dietician Kelly Faltersack in the afternoon yesterday. I’d already gotten my starter pack information and had read and watched quite a bit on the diet, so I felt safe eating within the diet for breakfast and lunch and making yesterday my first full day with the program. I will say that I encourage anyone who reads this and wants to start the MAD or another keto diet for your epilepsy or other health challenge, talk with your health team first. There are a lot of details they can help with to save you a lot of trouble and make success more possible.

Just in my first day I was struck by what it really takes to rebalance my diet and get sufficient calories. A number of years ago I worked with a different Kelly, an old friend of mine and a nurse practitioner, to do allergy testing and revamp my diet. At that point I moved from being a junk food junkie to really becoming a pretty healthy eater. I don’t keep sugar in my house. I also don’t keep chips or pop. I will sometimes have some potato chips or a non-caffeinated soda when I go out, or at least I would until now. The point being that for an American I eat well. Still, yesterday I found myself getting hungrier than usual between meals. I looked at the tracking system I am using and realized that even with adding what I thought was quite a bit of additional fats, my calories were too low. Yesterday I ended the day with a grand total of 888 calories. ( *Note- calorie counting is not a regular part of MAD for epilepsy) That was okay for a day, but clearly not healthy for more than a few days in a row. It became rapidly clear that I need to figure out a new way of understanding servings. It is an interesting puzzle– how to get sufficient calories without going over 20 grams of carbohydrates in a day.

So, today I am working on the puzzle. I added another egg and two tablespoons of heavy cream to my scrambled eggs. I am glad to say that I’m not feeling as hungry today so far. It is still fairly early in the morning though. It’s interesting to look at food servings in that different way. Normally, I would want to add something bigger, something that takes up more space or seems heavier to fill myself. It is strange to me to think of just a tablespoon or two of liquid as a large source of calories and energy. It’s always been true. I’ve just never thought of it before.

My other challenge for the day will be building up my water intake. Typically, people are encouraged to drink at least 64oz of water per day which many of us don’t succeed in doing. Because of my epilepsy medication and being on the MAD my neurology team is advising me to drink 74oz. That’s a lot of water! But, it sounds a lot better than the alternatives of constipation and possibly kidney stones, so I am holding up my water bottle and toasting good health to us all.

Is anyone else out there using the MAD to address epilepsy or other health issues? I would love to hear your stories. Please share.

Going MAD With Epilepsy

I was diagnosed with epilepsy nearly a decade ago. I’ve tried numerous medications with some success, but also with quite a few challenges brought on by allergies. A few years ago I had a vagus nerve stimulator implanted to assist in stopping my seizures. It helped significantly, but I still have a seizure every month or two. A seizure once every month or two isn’t much in comparison to the many others who deal with dozens or even hundreds of episodes every day, but it is enough to impact daily life.

A few months ago I gave up driving after an accident involving a seizure behind the wheel. I don’t know if I will ever drive again. Instead, I returned to Madison, a city with reasonably good public transportation and known for its walk/bike-ability. Now, I find myself waiting to find out if a potential employer may withdraw a job offer since I was open with them about my disability, deciding what to do and remembering past similar experiences. Even with just one seizure every month or two it is an interesting learning experience in understanding living with disabilities.

It is a challenge. There are struggles. There are also opportunities to live, to improve life, to grow, to heal, and to become a better me. I am setting forth on the journey of one of those opportunities. I’ll be meeting with Kelly, the dietician on neurology team, on Tuesday for a educational session that will start my Modified Atkins Diet (MAD), a form of the Ketogenic diet.

The Ketogenic diet has been being used effectively to treat .epilepsy since the 1920’s. As medications for the disability became available use of the diet disappeared because of the challenges associated with maintaining it. Over the past two decades it’s become used increasingly with children and now is beginning to be used more with adults as well in forms like the MAD.

Over the past week I’ve been mourning the letting go of foods that I associate with comfort, treating myself, or maybe the “good life.” I’d already made significant changes to my diet a number of years ago, so I don’t eat fast food nearly every day or make pasta a regular part of my diet like I used too. In fact, I don’t even have any cane sugar in my house. Still, I’d rather have a burger with a bun than without, prefer potato chips over kale chips, and like a good piece of pie with ice cream every once in a while. Some things I will say goodbye to, others will be significantly limited. The average American eats about 250 grams of carbohydrates daily. It’s my understanding that the MAD will put me at about 20 grams of carbs each day. My intake of fats will increase and many of my go-to carbs will disappear. This will allow my body to go into ketosis, using fat for energy.

This morning I sat down and created a list. It was a list of “MAD Hopes.” I am beginning my celebration of a new beginning. It began with a list of hopes for what I will achieve from this journey, both small and huge. The most important among them being reaching seizure freedom. Over the upcoming days, weeks, months, and maybe even years I hope to take you on this journey with me as I blog about my story, share my joys and struggles, and what learn along the way.

What Happened Next? Looking at the History of Underrepresented Peoples

I was watching a documentary on PBS last night about the life of Helen Keller. It was an interesting show that focused primarily on her adult years rather than the childhood picture that so many of us were introduced to as children. It made me wonder about how often we cheat ourselves by contenting ourselves with stories of history that are meant for children and that usually are missing major pieces that really make the story. I wonder how often we cheat the children in our lives by minimizing their education with these simple stories like that of the little deaf and blind girl and fail to tell them of the woman who was a prominent socialist, a skilled writer, an actor, public speaker, ambassador for US, and so much more?

Clearly, stories designed for children whether written or video or some other form are often less complex than those created for adults. But, how do we take that first story and make into a series? When we look at something like “The Miracle Worker” it seems like the story ends with the miracle of Helen learning to communicate, but in reality that’s only the beginning. We do much the same thing when we talk about many other figures in history, particularly those from historically underrepresented groups. Rosa Parks is a great example. We largely get the story that this individual woman was tired, sat down, and refused to give up her seat on the bus. Not only is that historically inaccurate, but it’s incomplete. Mrs. Parks was a trained community activist who had a history in the Civil Rights Movement. She was part of a much larger strategy to integrate the busses in Montgomery. She also remained active working for social justice through the Civil Rights Movement, Black Power Movement, as a staff person to US Representative John Conyers, and working to support political prisoners in the US among other issues until her death in 2005.

People like Ms. Keller and Mrs. Parks are so much more than what we often give them credit for. By failing to recognize the breadth of their contributions and those of others like them we fail to fully support and encourage the next generations of those who share pieces of their realities, whether those be young women, people with disabilities, people of color, Indigenous peoples, or others. Reading the children’s books and watching kids movies about these historical figures is great, by all means do it! Don’t forget the next step though. Dig a little deeper. Ask “what happened next?”

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.

Riding the Bus in Madison

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?

Thoughts on Making Schools Safe

While sitting in the laundromat earlier today waiting for my clothes to dry, I was paging through the news on my phone. I saw an article from WPR that said Wisconsin schools are calling the police on students at nearly twice the national rate. Kids with disabilities, Latinx, Black, and Native students are the victims of most of the calls with Native kids at the top of the list closely followed by Blacks. The article made me ask again what it is that I love so much about my home state, maybe it’s my love of wanting to make things better.

While calling the cops on these kids might simply mean a referral for a child in crisis or a warning for some teenage action like yelling at teacher and aren’t by any means all arrests, it’s still hugely problematic that kids with disabilities and BIPOC youth are being referred to law enforcement at twice the rate as the overall student population and Native kids are three times as likely to be referred as white kids. It’s 2021 and we’re still operating as if it’s against the law in Wisconsin to have brown skin or to have a disability! Come on folks we can do better than this!

While I don’t pretend to have all the answers. I do think there are a few things that put together are worth considering.

  1. Take cops out of our schools. I’m not going to say that police are bad. I am saying that they have a role and that role is to uphold the law. By having them in schools that presumes that the law is not being upheld or is in danger of not being upheld. It tells kids that our expectation is that they will behave as criminals and that their space isn’t safe. Kids getting the message every day that they are criminals in an unsafe environment are more likely to act as criminals in an unsafe space.
  2. Support the support systems. A few generations ago black and brown children were stolen from their families to be sold in slavery or handed over to the boarding schools. Still, family systems remained and adjusted to care for these children. These family systems are under great stress as the dominant white culture continues to steal their children away through foster care, prison, drugs, and other tools. It’s important to recognize that families don’t look the same, nor should they, across all cultural groups. We need to see these systems and simply stop threatening them and stealing their children.
  3. Care for the educators. This is a simple one that we’ve all heard many times. Our teachers and school staff need the physical resources, time, and classroom support to do their jobs. They also need to be compensated for the work that they do. That’s it.
  4. Honor the bodies and spirits of our children. We are all impacted by what we take in. Our kids today are taking in a lot of junk. They’re fed junk on their plates in the form of processed foods filled with sugars and chemicals. They’re fed junk on the screens of their phones and computers all day long. They fed junk in stories about themselves as they’re forced to digest the history of the powerful that doesn’t represent them. All junk. How can we expect anything other than anger and frustration? Feed them goodness. Feed them good food. Feed them the stories of their own peoples. Tell them their histories of strength and courage. Feed them beauty. Give them the opportunity to run and play and explore the world or just the backyard. Feed their souls. Let them stretch their creative selves and find other ways of being beyond angry.
  5. Look at ourselves. These kids weren’t born angry or trouble makers. They were born cute and cuddly, adorable and sweet. We made them who they are. It is us who need to deal with our stuff. It is us who need to look at ourselves each day and ask ourselves how our actions are impacting the world. It is us who need to act.