Category: disability

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.

Remembering What’s Important

Image result for St. Coletta School

I remember, as a little girl, watching “Facts of Life” on television.  I always wanted to be one of those really lucky, smart kids who got to go to a boarding school.  It seemed so special, almost magical to have that kind of freedom.  It’s funny looking back at it now.  My older brother actually went to a boarding school, St. Lawrence Seminary,  and I visited him quite often as a young child.  I saw his boarding school first hand often.

I also saw St. Coletta’s.  I was thinking of it today, remembering how I loved to visit St. Coletta’s, how I was really kind of jealous of the people that I met there, how I wanted to live there in that wonderland.  I had no idea, as a young child, that the people who I met at St. Coletta’s had severe developmental disabilities.  I just thought they were happy and having fun.  Maybe they were.

St. Coletta’s is a special place in my memory because of a special woman who left the world this morning.  Sr. Phillip was my aunt.  She did laundry and care giving for residents of the school.

There are many of us in the world who hold that title “I grew up Catholic.”  It seems a lot of us hold an anger about that experience especially about the nuns and priests in our lives.  I don’t.  I don’t hold the same beliefs I did when I was younger, but I look back at some of the believers who’ve taught and guided me and I am inspired.

Sr. Phillip was one of those.  I remember her hands, scarred from years of work.  Her smile and twinkling eyes, her walk that really was just like a penguin.  Her hips and legs had to have caused her great pain.  For the last several years she depended on an oxygen tank.  But, she never complained.  She was truly happy.  So often we’re running from here to there acquiring stuff, seeking accomplishments, trying so hard to be greater than we are and falling short, disappointing ourselves and just being lost.

Sr. Phillip just smiled and laughed and enjoyed the people she was with.  She lived over 90 years.  I knew her half that time.  I don’t remember ever seeing her angry for more than a moment.  I think back now and know that she spent decades of her life working and living with individuals facing huge challenges in their lives.  She lived with a vow of poverty.  She also lived within a loving community, with a faith that meant a great deal to her, as a part of a family that she loved.  She had it all.

I thank her for reminding me what’s important.

Challenges and Gifts

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?