Category: epilepsy

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?”

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?

Not Done Yet

It was four years ago now that I contacted an old friend from high school and asked her for some help. I was struggling with seizures, depression, fatigue, and just general poor health. I was also at my highest weight of my life, tipping the scales at 217lbs. I was tired of my epilepsy medication which seemed to be causing more damage through side effects than helping and I was just tired. I needed some support. I needed a guide to help me reassess my approach to food. Kelly had studied nursing after high school and become a nurse practitioner working in wholistic medicine. She seemed my best chance. I sent her a note and set up an appointment.

It took a great deal of commitment just to make that appointment. Like many wholistic healthcare providers, the company that Kelly was working with at the time didn’t work with my health insurance and cost was significant for my small income. But, as it is with so many illnesses and addictions, there comes a time when we hit bottom and have no other choices. I had to do something and this was it.

After some allergy testing we removed a few foods from my diet and my life began to change. The foods removed for me were avocado, kidney beans, green pepper, black pepper, potato, pineapple, cane sugar, buckwheat, and olives. None were major allergies. All were irritants to my system.

Over the next six months I would lose nearly 50lbs regain energy and start a new adventure in my life that would both cause me great pain and give me some tools to keep healing. That adventure was leaving my work at Toxic Taters (a small nonprofit fighting pesticide abuse in Minnesota) for the University of Minnesota Morris and the Center for Small Towns.

The Center for Small Towns (CST) was a lonely place for me. I loved my students. They were great. There were some wonderful faculty and staff on campus and in the community who I’ll always count as friends. But, it was clear from the beginning that I didn’t fit in on campus. The prairie wasn’t wasn’t my home and neither was my workplace and it hurt.

Thankfully, Kelly’s guidance had given me a foundation to stand on during my three years in Morris. I didn’t stay 100% true to the dietary advice, but I’d made the big changes that I needed. I could now tell the difference when I ate well or I didn’t.

It’s easy to sink into bad habits and over the past four years between the struggles of having spent three years in a place that I didn’t belong, dealing with broken bones, surgeries, getting laid off in the middle of a pandemic, switching jobs, and moving among other things, I have sometimes resorted to my old frenemy junk food. I’ve gained back about 22 of those 50lbs that I lost. But, I’m not done and I’m getting back on track once again. I am happy to be back in my home state of Wisconsin. I’ve recommitted myself to eating what’s good for me and exercising in ways that I enjoy to build my health.

Right now that means that I’ve just restarted running, not fast or far, but my dog and I are running just a bit to start our morning walk. I’m also spending 15 or 20 minutes a day to workout with my resistance bands and later in the day 20 minutes or so doing yoga. Each day I’m watching what I eat, making sure that it’s mostly fruits and vegetables and that I’m avoiding processed foods and cane sugar. I’m just starting to see my weight go back down. I am confident that I’ll reach my goal weight, probably in the next six months or so. More importantly I will continue to meet my goal of maintaining my health and happiness for the long term.

I am thankful to Kelly for helping me out four years ago and hopeful that my experiences can provide something for others moving forward. It’s an up and down road, but we are all moving forward.

New Life

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

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

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

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

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

Five Months Later

It’s been five months now since I lay in the epilepsy monitoring unit at Mayo, practicing my guitar, reading, watching movies, crocheting, doing just about everything but having seizures. But, from that visit and my prior one the doctors had enough information and we agreed to surgery and the installation of my VNS. While my seizures aren’t totally gone yet, it’s been a huge help both significantly cutting the number and intensity of incidents and just giving me better energy and raising my mood.

I am thankful for that for many reasons. A big one is that today also marks the five month anniversary of another huge change in my life. It was five months ago today that Dad made his journey to the spirit world.

I’ve not lived at home for any length of time since 1990. For the six years prior to Dad’s passing I lived in a different state. I only saw him around holidays and maybe for a few days in summer, but until his dementia took over we talked every week, usually Sundays, on the phone. Over the past year with his dementia taking hold phone conversations weren’t an option any more. I saw him last Christmas. He still knew me then, but by Easter when I called, because COVID didn’t allow for a visit, he no longer understood the staff when they tried to explain to him how to use the phone. I would never hear him speak to me again, at least not in this world.

It is the strangest thing, neither sad nor happy, but simply beautiful I suppose. I have seen more of Dad in the past 5 months than I had in years. He visits almost every night in my dreams. I don’t remember what he’s said when I wake, but he’s always happy, always his smiling self, laughing and joking, and just enjoying being where is and still watching out for his baby girl. Each day it seems I have a moment where it hits me again that he’s really gone. I can’t call him. I really won’t see him. He won’t be there when I go visit family. It hits hard and knocks the wind out of me for a moment, but my dreams bring comfort. While he isn’t here, he isn’t gone.

Over time, I suspect, both the daytime hits to my heart and the nighttime dreams will fade and eventually go away. But, I really do believe that Dad will always be there. That he will always be watching out for his baby girl. I feel so lucky.

Here I am five months later in a new job that I like, living in a new place close enough to family and friends that even with COVID I’ve been able to get together with people for hiking and dog park visits. My seizures are getting a lot better. And, having just looked at the goals I wrote before moving, I can see I’m doing well is most all of the area that I want to. I am thankful.

Growing Clarity

It’s been almost two weeks now since my VNS device was turned on and nearly a week since my first increase in voltage. There will be six more increases in voltage until I reach my full dose that will, hopefully, significantly decrease if not stop the seizures that have been a part of my life for so many years.

Already the little device seems to have become a natural part of my being. This is so much different than medication. Sometimes I can feel the little buzz in my throat. I think of it now as a frog in my throat and it reminds me of Kermit singing “Rainbow Connection” from the Muppet Movie, one of the first movies I ever went to see as a child. It brings me good memories and comfort.

Where almost every medication I’ve tried has brought me rashes, tremors, fogginess, and just a general feeling of malaise, I am slowly feeling the curtain lift with this treatment. Buddy and I are back to walking about 2 hours a day. My focus is returning at work. I’ve been feeling good enough about myself and my direction to get myself a few household gifts, things I’ve needed for quite some time but just never got around to purchasing. I’ve returned to actually reading, not just listening to audio books. A lot of little things, good little things. I feel the world turning in a good direction.

I am once again beginning to move toward bigger questions. Walking through the small town where I live I’ve been seeing lots of Black Lives Matter signs. I have one in my own yard. There are very few Blacks who live in the community. I find myself wondering who the signs are for. Are they here in support of Black people facing discrimination and racism or are they here to make White folks feel good about themselves because they put up a sign? I don’t know. I keep puzzling and have found no easy answers, but it does seem to be a question worth pondering.

Mixed Feelings

What strange times. I continue to find myself flying about in this bizarre whirlwind of transition where I don’t quite know what to feel or how.

I spoke with a financial counselor this afternoon. I’ve worked most of my adult life in small nonprofits and childcare, so low paying jobs without a lot benefits beyond feeling that I’ve done some good in the world. That means I’m like most Americans haven’t built up a big nest egg and have a few bills to deal with, nothing major. I decided to talk with the counselor though after becoming a beneficiary of a small sum of money. I wanted to use it the best way possible. She was really helpful and we were able to figure out a good plan to address my debt and build my savings. I left the conversation feeling really good. Yet, it feels strange to feel really good about those kinds of conversations.

Mixed feelings came with my VNS implant too. It’s an amazing thing to be there in the doctor’s office getting this little device turned on, to feel that little tickle and feel my voice change, to know that it might really be the ticket to regaining my life and stopping my seizures. Yet, when it was done I couldn’t call my Dad to tell him how it went. All I could do was rely on the belief that he already knew, that he was there in the room with me, taking care of his little girl.

He keeps taking care of his little girl, helping me with my finances, making sure I’m safe and doing all that he can to help me be healthy again. It’s making me so happy, so thankful and at the same time I just want to see him smile, to give him a hug, to tell him I love him one more time. I guess that’s how it always is and that’s how it will be. I am so thankful though and amazed at that power, that power of love that keeps taking care of his baby Amy even after his body is gone.

A New Song

My mom loved to sing. She sang all the time. She was part of the church choir. She sang while she did housework. She sang in the car. She sang while she rocked the grandbabies. She even had a really annoying little ditty that she sang to wake up sleepy kids who were in danger of being late for school. I miss that voice. I’ve been thinking of that voice as I prepare to get my VNS to turned on in a few days.

I’ve sung since I was a baby. Mom and I sang together all the time. It was something we both loved and that brought us together. These last few days I’ve been listening to a lot of the old country songs we used to sing together. What an amazing era of music. I don’t sing as much as mom did, but I still sing quite a bit and find it to be one of my greatest healers

The VNS is implanted in my chest with wires that go up into my neck and wrap around my vagus nerve. It will send a small electrical wave every couple of minutes on a regular schedule and whenever my heart rate jumps or it’s manually set off. When that electrical impulse goes off it’s likely my voice will change, getting a bit scratchy or maybe causing a cough. I find myself wondering if I’ll be able to sing.

I was listening this morning to Dolly Parton, Loretta Lynn, and Tammy Wynette singing together and thinking about mom. I was reminded mom never sang like any of these women. I don’t sing like any of these women. It doesn’t matter. There are times and places where hitting the right note is important, but the thing that really made my mom’s singing beautiful was the way that her heart showed through in every note whether her pitch was perfect or not. My voice will scratch. I might not be a good addition to a choir again, but I’ll still be singing along with the radio and with the little kids in my life and that’s what it’s all about.