Tag: epilepsy

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?

The Mayo Experience

It’s been two days now at Mayo. Yesterday, I was at the clinic where I met with doctors, had an MRI, and got blood tests. I have decided I am not a fan of MRI machines, though I did make it through. I am happy to say that I didn’t sneeze while in it too. It was definitely a possibility as I have been hit with a head cold for this visit. I could just imagine sneezing and getting snot all over the inside of the machine and spraying into my face.

It was a tiring day. I was supposed to have a sleep deprived EEG in the afternoon so I’d only slept four hours the night before and those weren’t the most restful. So, I wasn’t at my best. But, it may have helped get me to today. Instead of the EEG yesterday the doctors scheduled me to have a multi-day EEG and video monitoring at the St. Mary’s Hospital.

I walked here early this morning. I tried to get the shuttle, but I wasn’t sure I had called it correctly, so it seemed better to just walk the couple blocks from Neuro Hospitality House. I am glad that I did. It’s good for me to walk and be outside, healthy for the spirit. I got signed in at 7:30 and by about 9 or 9:30 I was all hooked up. Within an hour or two I had a seizure just under a minute. It left me pretty confused. The techs came in immediately and were asking me questions. I couldn’t remember the name of the state where I live, Minnesota. I knew it was near Wisconsin and that it started with an M, but it took a while for me to say it. I couldn’t remember Rochester at all.

I’ve been twitching more throughout the day and pretty tired, but I don’t think I’ve had any more seizures yet. It’s been a relaxing day, just sitting and watching movies and napping. I tried reading right around the time of my seizure, but I couldn’t do it.

Staying in the hospital is weird. It brings back memories. I spent a lot of time in hospitals when I was a kid. My mom had cancer. She was diagnosed when I was six and died when I was twelve. She did a pretty amazing job being a mom from her bed. I celebrated my birthday by her bedside. I think it was my 12th. I still feel her with me as I am taking my turn laying in bed. It still feels like she’s here in my heart and taking care of me, assuring me that it will be okay.

We’ll see where things go from here. I am hoping for more of an update tomorrow.

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?

Thinking Deep at 4am

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.