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.

Care for the Water, Care for the Women

I was back at the state capitol today. Sometimes I wonder if I should maybe just avoid that building. It seems every time I go there something makes me cry.

Today, I was there to join with hundreds of other to remember and honor all the missing and murdered Indigeneous women. As of 2016, the National Crime Information Center reported 5,712 cases of missing Native American women and girls. I am terrified to considered how much the numbers have grown since then. Indigenous women and girls are ten times as likely to be murdered as all other ethnicities. More than half of Native women and girls experience sexual violence. According to the Center for Disease Control murder is the third leading cause of death among Indigenous women.

Today, we sat and listened to the stories of survivors and to stories of the families and friends of those who didn’t survive. I found myself in tears and thinking about some of the little girls I got to know during my time in Minnesota. In particular, I found myself thinking about two little girls who are now both just coming to that stage of life of entering womanhood. I remember that time being confusing and hard enough with body changes, the discovery of sexuality, and noticing the cute guy at school. These girls live in a different world and I could only cry as I can’t protect them on my own.

Why is it this way we wonder? Well, all I can come down to is that it’s about power. These little girls, these women are too powerful. If they are allowed to keep their power, the forces of evil would be crushed. Rape is a tool to control and break down not only the individual, but the whole community. If the women are controlled with the force of violence and fear, the children are controlled. If the women and the children are controlled, the men are broken. Nothing works anymore. The community struggles to merely survive when the women are no longer safe.

Who profits when the community struggles? Big oil, mining companies, all the corporations who make money off of Indigenous people’s lands and waters. That’s why we see the numbers of women disappearing and being murdered going up when the mining companies and oil pipelines come in. It’s control. It’s breaking down the community and tearing out the heart.

So, what do we do? Listen to the women and the girls. Honor them and respect them. Don’t allow for this injustice to continue. Remember that these women, they are the keepers of the water. Respect the water and you will respect the women. The two are not separate. Care for the water. Care for the women. I can’t protect those little girls on my own, but together we can. Each action, every day keep remembering. Care for the water. Care for the women. Respect the water. Respect the women.

Women’s Role in Keeping Life

I spent my evening today on the steps of the Wisconsin state capitol along with a few thousand others continuing the struggle for women’s rights. I’ve spent a lot of time on those steps over the past thirty years at a whole lot of rallies working for justice for a lot of people and a lot of places. Tonight as the crowd started to gather I found myself sitting and thinking of one of the first rallies I went to back as a student activist in the 1990’s. We were fighting the proposed Crandon mine. Frannie Van Zile, an Anishanaabe leader of the struggle from the Mole Lake Nation was speaking. I can still hear her voice echoing in my heart. Her words still guide my actions every day. “You women, you women out there. You are the keepers of the water.”

Women are the bearers of life. We are the keepers of the water. This is a great gift and a great responsibility. This is why many Indigenous nations historically hold women with great respect and why everything gets out of balance when women aren’t treated with the respect and honor that they deserve. Things are out of balance these days. The probable overturning of Roe v Wade is one clear sign.

Women must be held in respect as the bearers of life. Taking away their rights to protect their lives and safely make the difficult decisions to choose not bear a child is not respect for the child or the mother. What happens to the child that is born to a mother who doesn’t have the financial, social, or emotional resources to care for them? Is it better to be born unwanted into a world that can’t care for you and to become the scourge of those who are supposedly pro-life when you’re forced to fight to survive outside the womb? The foster care system is overburdened. There aren’t lots of people seeking to adopt. These children forced upon these women will simply die outside the womb either fully or simply in their souls. Is it better for a woman to be held victim to rape or to face the results a failed contraceptive every day for the rest of her life while the father walks away? Or is it better for her to die in the back alley? Clearly none of these options is good for anyone.

When we respect the women, when we hold them up and support them as they make the most difficult decision of their lives they become stronger. When they become stronger we all become stronger. It is when we care for and support these women that they can grow powerful, they can love, and they can bring back balance. Abortion is a painful choice, but it is a choice and as long as it is legal it can be a safe choice. If we lose legal abortions we will also lose women’s lives, and that is not pro-life. It is simply wrong.

No One Wants An Abortion

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

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

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

Ponderings on Race in Madison Today

Ah the wonders of returning to the “thirty square miles surrounded by reality!” Yes, that is what many know Madison as because it is a community unlike any other in the state of Wisconsin. Its hyper-political, ultra-educated, super-liberal personality makes it a strange juxtaposition to the grounded-ness of the surrounding counties in their simply seeking to work hard and live right style of being.

I was reminded of where I am by several interactions this week. One was on my bus ride to work. The driver had just stopped for three teenaged girls, but wasn’t opening the door. Instead, he was shouting at them to put on their masks, telling them he’d open the door when they were masked. Two already had their masks on, the third was putting hers on as she prepared to board. I saw no reason to shout or prevent them from boarding. It seemed their behavior was much like my own had been, still getting my mask on as the bus stopped. The difference was stark though. I’m a middle-aged white woman and they’re teenaged black girls.

I am impressed by these girls, despite the rude and cruel behavior of the driver they moved forward as they seem to each day. They get on the bus, find seats by a woman who I think works at their school, and start to share stories of their day with her. They’re good kids, well behaved, and take good care of each other. I find myself wondering how long they can withstand the expectation that they are something other than good kids? How long until they meet the driver’s expectations because they are told through such actions that they are supposed to be trouble makers or somehow less than?

I found myself too in a conversation about race with a group of white folks from a predominately white group this week. The discussion was about welcoming people of color into the organization. I appreciated the openness and honesty of the group talking. Despite not knowing each other well, or maybe because they didn’t know each other well they took some risks in what they were willing to say. The conversation was interesting and unusual. Instead of focusing on the evils of racism it centered more on the question of being with people of like experience. Asking why would the organization want to increase the number of people of color involved? Do we seek to engage more people of color simply to make ourselves feel better? What does that mean? What value do we bring to the relationship? What are we willing to change in order to share ownership? Are we willing to change?

The conversation was both valuable and ugly. While there were no words spoken in anger and everyone seemed to be taking pause to think deeply, processing ideas and feelings fully, being open to learning still the conversation brought such ideas to light that I could almost imagine the hoods. The questions, the ideas; asking if “they” might not just want to be in “their” own group, if “they” might not want to be with “us”, if “they” might want to have “their” own kinds of celebrations, music, and ceremonies, if “they” might somehow be different than “us.”

These are well educated people. Yet, the world created dividers and told them who the other was. It was so much like the bus driver and the girls. Expectations are set, regardless of reality. I can only hope that we can change ourselves and become like the school staff person on the bus who each morning greets the girls with a smile and a kind word, who sees who they really are.