Tag: disability

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 Making Schools Safe

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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.

The Gift of Going for a Walk

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I’ve disappeared from the blog-o-sphere for past few weeks. In fact, I’ve disappeared from quite a bit of life but with good reason. You see, about three weeks ago I was laying in bed watching Netflix when suddenly I had a broken ankle. Seriously, that is the truth no matter how strange it sounds. It’s not clear how my ankle was broken, but as I was diagnosed with epilepsy about six years ago, there’s a good chance I had a seizure. I don’t have seizures often, maybe two or three a year. Usually they just leave me with a headache and a sore tongue, but this one didn’t give me a headache at all, didn’t really hurt my tongue either, but it impacted me in other ways. That is, of course, if it was a seizure. There’s still the possibility that it was my dog jumping up on the bed and landing on me. My memory suggests that may have been what happened. My dog’s size, about 35 lbs, makes it pretty impressive that he could cause that kind of damage.

It’s been an interesting journey. The injury happened Monday night. When the pain wasn’t gone and there was some swelling, I decided to go into urgent care on Tuesday. The staff were pretty amazed that I was walking on a broken ankle. I was a bit surprised to learn it was actually broken.

They gave me a cool moon boot and crutches and sent me home to rest. I slept for about a week. It is amazing how much energy it takes to heal. That first week really sleeping was almost all I did. By week two the swelling was down enough that it was time for surgery. I thought with just a block of anesthetic behind my knee that I might get to experience the operation in a conscious state. I didn’t. I slept. Then I spent the night in the hospital so they might monitor for seizure activity. There was none. I did learn that I do not like percocet. Heavy duty painkillers are horrible things. I took it once and refused it thereafter. I really didn’t have any significant pain. At that point, I actually couldn’t feel my foot at all yet so it made no sense to me how the hospital staff kept trying to push painkillers that set my motion sickness into high gear. I couldn’t move without feeling nauseous.

After a few more days at home with my foot up I returned to the doctor and got the okay to return to work with my walker. That’s been the true gift. Before this accident I walked to work, and most everywhere else, every day. In my little town of about 5,000 people, I would typically put on one to five miles a day just doing what I needed to do. Right now, walking a block with my walker is significant exercise. My ankle is healing fast and I’m hoping to get back to a more normal routine in the next month or two, but this is where I am right now.

I find myself thinking a lot of some old friends who taught me about accessibility from their wheelchairs. I am especially thinking of Mark. He was a volunteer when I worked for the Grassroots Leadership College. He had severe physical limitations. I remember him apologizing once when he was late for his shift. He told us how when it was raining the bus drivers would often pass him by. They didn’t want to get wet helping him board the bus. That was just one little example of how the world treated his disability. There were too many others. Eventually, he had enough. He rolled himself down to the lake, propelled his body out of his chair, and landed face down in the water and ended his time being discriminated against.

My experience is nothing like his, but it has been a gift to look at accessibility issues and at how I see myself in this world of varying abilities.

First, I kind of have to laugh at myself. I found myself thinking the other day, as I was trying to open a heavy door without losing my balance, “this would really suck if I really had a disability!” Okay, now I am traveling around on eight screws and a plate, using a moon boot and a walker, because of a broken ankle that was quite likely caused by a seizure. Some might say I have a disability. I don’t really identify with that. It doesn’t make much sense to me. So, there is that, the whole question of what is it to have a disability in the first place? Who gets to decide who has a disability? Why do they have that power?

Then, I have to say “god bless the elders who do this in snow or on hills!” I live in Minnesota so I am thankful that my injury didn’t happen just a few weeks later. Did you know that if you hit a crack in the sidewalk your walker might veer off the wrong direction? Or did you realize that walkers really don’t have very good brakes and can start speeding along on even the slightest incline? I have the gift of being an in shape and strong middle aged woman. I can handle these challenges pretty easily. But, it’s tough for me to imagine what it’s like to use a walker if you don’t have the upper body strength or the sense of balance.

I’ve fallen a couple of times since I broke my ankle. I’ve been able to lean into my fall and land gently. Still, I think to myself what more damage could have done to the already broken spot? Or, thinking again of our elders, I wonder about my hips. It seems that for too many the broken hip is the kiss of death. I have two small steps going into my house. Normally, I barely notice them. Now I realize that they could kill someone.

I’m learning the little things about accessibility from a different perspective and it’s good for me, good for us, to know. One of my first lessons was on my first day back to work. I had to go to the HR office to drop off some files about the incident. HR is on the second floor of Behmler Hall. I’ve worked on campus two years, but don’t go to Behmler all that much. I knew there was an elevator, but I wasn’t sure where.

The bus dropped me off not far from the front entries to the building. It was then I really noticed that both of the main entries have stairs. I had to go down the hill alongside the building to come in a back door to find the elevator. Going down the hill I was thanking my lucky stars that there wasn’t any ice yet and wondering how people make that trek in winter. I also thought about how I’ve been on campus for two years and I had to search to find my way. I wondered about people coming to campus for the first time. How can you feel welcomed if you can’t come in the door?

Thinking of doors, I never really realized before how heavy doors can be. I also never really noticed how often there are buttons on exterior doors to open them, but once you’re in a building interior doors often don’t have that access tool. The building that I work in has, what I had always thought were accessible restrooms. They’re big with room to turn a wheelchair, the sink, soap, and hand dryers at good height. I think there’s even a bar to help getting on and off the toilet. But, those doors are heavy as heck when you’re balancing on one leg and using a wheeled device for mobility.

My experience thus far has been a simple one and there hasn’t been much that I can’t find a way around. I have been given the gift of hearing stories though. I know that there are people on campus who’ve not taken on roles that would both benefit them professionally and benefit the campus community because of the challenges of access in some of our campus buildings.

Sometimes people fight for access and sometimes they decide to just take a different route in life because we can’t all be fighters all the time. Sometimes we just need to live.

I encourage my friends to notice the steps, think about the weight of the door, look at where the furniture is placed, acknowledge the shelves and where supplies are kept. Note these things. Decide for yourself what is acceptable and change what is not.

Challenges and Gifts

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My father will turn 90 in just a few days.  Family is gathering for the party tomorrow.  I’ll be 500 miles away.

That wasn’t the plan.  The plan was that I’d drive home yesterday, spend a little time with friends along the way, then head for a weekend with family.  My body, well actually my brain, changed the plan.  I have epilepsy.  I was diagnosed in 2013.  My seizures have been well under control, but one showed up a few days ago and I had to set down the car keys for the next few months.  And, I had to take a few days to just rest and recover.

The good news is that it encouraged me to pick up the laptop again.

I don’t know why I have epilepsy.  I come from a large family and I am the only one with this challenge/gift.  I can hypothesize a list of possibilities, and I have many times. But, the reality is that it’s here and I get to live with it.

Why write about it?  Well, because it is a gift and gifts are good to share.  What? Epilepsy is a gift? No way!

I will admit it’s not a gift I would have chosen and if I had the receipt I would most definitely return it, but it is a gift.  Here are just few reasons why I consider my epilepsy a gift in my life.  I wonder what unexpected and perhaps unwanted gifts life has given you?

  1. It’s helped me look at the temporary nature of life to better understand that there was a time without me and there will be another time without me.  That’s ok. Now is my time to be alive.
  2. It got me to take pause to take care of myself.  I’m now a whole lot more conscious of when I need to just relax.  I’ve totally changed my diet, lost a lot of weight, and feel much better and happier.
  3. It’s helped me empathize with the experience of others.  Seizures scare people.  They also sometimes limit some of the things that I am able to do.  Epilepsy is covered by the Americans with Disabilities Act.  So, I am told, by the law, that I now have a disability.  Some days I agree.  Some days I don’t.  But, I do know that I have a better understanding of how both my brain and societal rules create limits.
  4. I have found great support.  I am a lucky one.  I have a strong family and friends that don’t run when they get scared.  I’ve also been able to find some excellent online support groups that have added to the group of people that I have that understand.  How amazing is it when people stay with us through the our rough spots?
  5. It’s continued to inspire my work to encourage healthy living both as individuals and as community.  My experience simply reminds me that we need to take care of ourselves individually and as a community if we’re to survive and thrive.

What challenge/gifts inspire you and carry you forward?

Thinking Deep at 4am

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July 18th, 2013

A few weeks ago I had a seizure. It was a night like any other until I went to sleep. I had just gone to bed when my housemate heard unusual noises coming from my room. When I didn’t respond to her calls to me she looked in on me. She found me having what appeared to be what is now known as a generalized tonic-clonic seizure. They are more commonly known as “grand mal.” Because the seizure lasted several minutes and I appeared to be having trouble breathing she called 911.

In Madison we do 911 calls with style. They came with a firetruck and ambulance. I regained consciousness to see half a dozen uniformed men and women surrounding my bed. The really good looking guy was in charge of asking me questions. I did my best to answer those really tough ones like “what day is it?” Who knows what day it is when you’re awoken in the middle of the night? It’s tough to answer questions when you’re struggling to form words and figure out where you are and who these people are.

They decided to take me in to the ER. My housemate, Jennifer, met us there and helped me understand what was happening and was my advocate.

The days following that event were really tough. First, of all dealing with the migraine that came along with the two seizures that I had that night and all the other physical side effects. Secondly, exploring all the fears and new understandings that arose as well.

My family and friends have told me how lucky I was that Jennifer was there. I definitely was lucky. I’d thought for months that I might be having seizures. Now I have proof and can figure out how to address them. On the other hand, however, had she not been there I would have slept through it and just woken with a nasty migraine and nothing to fear.

So what does this have to do with organizing?

Lots I suppose. You can’t deal with the issues until you know what they are and you can’t change them, can’t win until you face the fear. It’s also a reminder to me that I am not permanent. There was a time before me. There will be a time after me. Some day my eyes will close for the last time and there’s a good chance I won’t know it.

How do we continue to do the good work with that knowledge, with a recognition of our miniscule space in the grand realm? Again I have no answers.

I do know that over the years I’ve had hundreds of conversation about burnout, trauma, stress, depression, and hopelessness as a part of what we do. I’ve been a part of many efforts to address such things. Some have helped. Some simply died away themselves.

I know that I struggle with those same things sometimes. I find myself losing my ability to feel the passion that I once felt. I am often left with just sadness and emptiness. I both miss the passion and am thankful to not have that intensity that has worn me out. Still, I look for ways to maintain and build my ability to feel and embrace and love this world and its beings.

We, as activists, organizers, and educators, need to figure out how to not just support others but support each other and ourselves. I find the last the hardest. There is always someone else who needs care, who needs support, who needs strength. They don’t jump in front of me in the line to receive care. I step behind them, push them forward. It’s easier to address another person’s needs than my own.

Tonight, or rather this morning I’m staying awake. I have to. I am going to get my brain scanned in the morning to see why I had those seizures. I have to be in a sleep deprived state. In a little more than an hour I will have been awake for 24 hours straight. Surprisingly I still feel quite awake. In fact, I’m going to take a shower and go for a long walk with the dog when I’m done writing this. It’s been a while since either of us has seen a summer sunrise.

I hope to learn something there that will help me move toward caring more for myself and through that care rebuilding my passion. I ask my fellow activists, organizers, and educators out there, don’t wait for the seizures and brain scans. Show yourself that love and caring that you save for those you defend today and every day. If we are to be in this work for the long haul, we need to be here for the long haul.