It’s the first day of a new life. I began my visit to the epilepsy monitoring unit here at Mayo on July 7th, the day that commemorates the passing of my mom. I am ending my visit with a goodbye to my dad. He died … Continue reading A New Life
Laying here at Mayo on day seven of my epilepsy monitoring unit experience, waiting for seizures and wondering when I will get that heartbreaking message to let me know that my dad’s journey has taken him to the spirit world. I find myself thinking about the history that cradles me in its arms and provides me strength.
Our strength is not solely our own. It comes from the generations before us who have brought us to this place. These days I find myself thinking of many people, one is my great-aunt Sr. Christine.
Sr. Christine was born in 1898 in Wisconsin. She grew up on a farm in outside of Port Washington. Many Catholic families of that time were pleased to have children grow up to be nuns and priests. I don’t know if my great-grandparents wanted Sr. Christine to become a nun, but I do remember hearing that they were unhappy with her choice to join the School Sisters of Notre Dame. They had apparently wanted her to be a Franciscan. But, Sr. Christine was a determined young woman who’d heard her calling and followed it despite the unrest that it caused in her family.
My memories of her are of visits to the convent where she lived in her latter years. I think of that little blue room that she lived in. She had her bed, a small wardrobe, and her chair. I don’t remember any other furniture. I don’t remember if there were more chairs for guests. I suppose there were or maybe we brought them in from another room. Her life was simple. Yet every time we visited she had a smile on her face and was delighted to share in conversations with many questions about how all the family was doing. I remember too how every time we went to visit she would have me or maybe mom or dad go to her wardrobe to pull out a little gift for me, usually a prayer card though once she gave me a lovely heart shaped box that I kept for years.
I think of her now as I lay here in this hospital bed and I recognize who taught me and where my strength comes from. It is from Sr. Christine who lived a life of simplicity and faced many challenges with a joyous determination and simple understanding that things would be okay. It is also from many others in my ancestry who I love and revere, but those stories are for another time. For now, I simply thank that dear woman for teaching me and making me who I am. I hope that my actions in life can honor her.
Continuing to hang out here at Mayo with wires sticking out of my head, waiting for some good old fashioned seizure energy to come coursing through. I think I might have had a couple seconds this morning, but I’ve not heard confirmation of that. I … Continue reading Endings and Beginnings
It’s day four now. Still no seizures and no confirmed date to go home. I did get to sleep for almost eight hours last night though. My medications are done now for this trip in hopes of generating a seizure.
I don’t know if it was a good thing or not, but I read some posts on one of the epilepsy support groups that I am a part of on Facebook. Some poor soul is also in an EMU right now, bored, and anxiously waiting for some seizures. She asked others if they’d ever been in the EMU and not had a seizure. The stories were eye opening. That is for sure. Some people have stayed in their monitoring units for more than 20 days. I am going to need more crocheting yarn if that happens! Others have been given vodka to induce their seizures. I asked my nurse about that one. It is a possibility. When I suggested a brandy old fashioned instead she was apologetic and explained that unfortunately it’s not an open bar. Oh well.
Dr. Lagerland and team did their daily visit just a few minutes ago. He’s encouraging me to keep up with doing sleep deprivation, so I am back to the four hours a night if I don’t have some seizures before then. I’m to keep exercising too.
I can tell that my system is wearing down. I started to get twitches yesterday and words are just a little more difficult. Spelling is a bit more of a challenge. I brought out my Ojibwe language lessons this morning for the first time in quite a while and practiced for about an hour. Learning another language at any time is challenging, in a state of sleep deprivation and medication changes it’s a real trip. But, I suspect it’s good to challenge my mind especially now. Besides there’s only so many television reruns and movies that anyone should watch at one time. Maybe today I’ll go back to the Call the Midwife series though. I’ve seen them all, but they’re just comforting.
I put the message out to my online support groups asking what people would like me to share about my experience in the EMU in my blog. I would love for my writing to be more than just an online journal. I would love for it to be a support or guide for others in a similar space. I hope that my readers will share my blog with others facing similar situations, that you will tell me your stories, and that you’ll let me know what you’d like me to write about too. Thanks for reading!
It’s 10pm on my third day at the epilepsy monitoring unit. My first visit here was three days. Tomorrow this will become my longest visit. Still no seizures. Tonight I’ll go to bed closer to my normal time. I’m told it’s not good to do sleep deprivation multiple days in a row. I am glad of that. Two nights in a row of going to bed at 3am was quite enough for me. We’ve stopped my seizure meds tonight too. I hope that this step pushes me into having some seizures.
It is so strange to hope for a seizure. I am in probably the safest place in the world to have a seizure, but still I am asking for something that I know gives me headaches and stomachaches and just generally can make me feel like absolute hell. I am also asking for something that I know always has that chance of killing me. It’s not a big possibility. SUDEP is pretty uncommon, but I am a middle aged woman who lives alone and has uncontrolled seizures. That puts me in a high risk category. So, even here in the safest place in the world asking for seizures seems such a risk.
I re-watched the documentary about the history of Mayo today. I’d watched in December too. I was reminded today that Dr. Charlie was the brother who did much of the work on brains. So, laying here in my hospital bed waiting for the seizures found myself calling on the spirit of Dr. Charlie to watch and guide. That’s it, that’s what I can do. I wonder how many patients every day call on the spirits of Dr. Charlie, Dr. Will and their father and the nuns.
What else is there to do with the crazy balance of fear and hope that comes with asking for lightning to strike in my own brain? I suppose I might again look at it as rebirthing in some way. If women looked only to labor, they would never give birth. I need to remind myself that my seizures right now are only the labor that I need to go through, the birthing to my new life. I believe that I will be seizure free. This is just a process for me.
Nearing the end of my second day in the Epilepsy Monitoring Unit at the Mayo Clinic in Rochester, or maybe not quite the end. I just found out that I am supposed to be sleep deprived again tonight. I am a person who usually goes to bed around 10 or 11pm. Last night I stayed up until 3 am. Tonight I’ll be trying for 3 am again in hopes of inducing seizures. So, right now I have another six hours to go.
Today I am thankful for all the little things that bring me joy. I’ve been sitting in bed all day, but happily keeping myself entertained. I’m glad I brought Sol (my guitar) with me to Rochester. With the help of a nurse who brought it over to my bed for me, I got Sol out and practiced for about an hour today. What a wild thing to be sitting here in my hospital bed just plucking away. I felt like Woody Guthrie for a moment there. I wonder if he had his guitar in the hospital and how long into his illness he was able to play?
I learned yesterday that I’m referred to as being “pre-operative” in my record, so it seems clear that the likely plan is that I’ll eventually be undergoing brain surgery. It’s left me to ask, what is it that I would like to do when I am seizure free again? What are my hopes and goals? It feels like it would be good to write down what I am thinking about to give it some structure, some greater sense of reality, to give myself something to attain, and to hold myself accountable. What I’m writing here is simply what’s coming to my mind. It may grow and change, but it is what’s here now and asking to come to the light.
Here’s what’s come to the light for me, what I want when I am seizure free again. I want to regain my right and ability to drive again and with that right I want to travel home to see my family, maybe take a vacation, and just go visit different little fun sites, day trips to learn about where I live and just have some fun. I’m hoping that ability to drive might give me the opportunity to see my Dad again before he takes his final journey. He’s 92, and a strong man. It’s hard to say when that journey might be, tomorrow or a few years from now. I’d like to do foster care again. I want to build my writing. I’m still unsure of what that might look like, what is my story to tell and where should I be telling that story? I’ve even wondered if I should be taking all of this stuff and creating a book to tell the epilepsy story. There really doesn’t seem to be a lot out there and there are a lot of people struggling. I’ve also thought about children’s books and works on racism and community organizing too or maybe just continuing to grow my blog. In any case I have a duty to keep telling stories someplace, somehow. I want to find my home or maybe it’s make my home. I’m not happy with my work at UMM. I love my students and our community partners, but the hierarchy and atmosphere of mistrust and political game playing is painful. Still, I don’t know if going somewhere else changes that. Maybe the answers are internal as much as they are external. I just know that I want to keep searching and find that contentedness and connectedness with my community wherever that might be again so that I might thrive. I want to act again and to keep playing music and enjoying my fun with the arts. I want to just simply enjoy life, build new connections, celebrate the ongoing connections, and be thankful for all the goodness in my world. That’s what I want. That’s why I want to move forward with brain surgery or whatever course of action that the Mayo staff and I agree on. I want my life back 100%. There’s a lot out there to celebrate and to learn.
I wish you all well on your journeys.
It’s day two in the Epilepsy Monitoring Unit. My seizure medication was dropped last night from 250 to 100 mg and I was put on sleep deprivation. I went to bed about 3 am and woke up again around 6:30 am. Still, as far as I know, I’ve not had any seizures unless some brief twitches were actually seizures. If they were they lasted only a second or two.
So, here I sit. I’ve got 32 electrodes in my head which is all wrapped in gauze because of my thick hair which makes it more difficult to glue the wires in place. I’ve got a IV in my left hand though it’s not connected to anything. It’s just there in case they need to put in any emergency meds. I’m getting blood drawn daily for research. I get my vitals checked a few times a day and got my first shot of blood thinner this morning just to make sure I don’t get any blood clots while I’m here.
But, here I am watching movies, writing, reading, coloring. Last night I spent several hours untangling an old unfinished crochet project so that I might use the yarn again for a blanket I’m working on. I’ve watched 3 movies (or at least parts of them), all of which I’d seen before, one documentary, and a couple of TV reruns. It’s really kind of amazing how sexist and hetero-sexist the Andy Griffith show was. We all just thought it was sweet and innocent.
It’s not a bad way to spend a couple days. I’m not bored yet though I suspect that my settle in at some point if my seizures don’t come and take over my mind. That’s the challenge or at least one of the challenges. Most of life is hoping there won’t be a seizure or just living in denial of the possibility of seizures. It’s a strange challenge to sit and wait and hope that one will happen, and not just to hope for any seizure but to hope for 2 or 3 that are long enough and powerful enough to give the doctors the information that they need. Seizures aren’t a pleasant thing. Waiting and hoping for a seizure is like saying to a boxer “Hit me! Hit me please! Hit me again!”
Then the other waiting. At some point today, probably yet this morning one of the doctors will stop in again to update me on our progress. I’ve been told that it’s likely that I have seizures that I’m not aware of. Given that my meds have been lowered and I’m short on sleep I am wondering if I have had seizures that I don’t know about. It’s another strange thing to have pieces of your life, even if they are just seconds or minutes that you weren’t there for. What do I do with that time that I never had? I just don’t know.
So, here I am waiting to be punched by the power seizure and to find out if pieces of my life have disappeared. It’s a strange place to be. Meanwhile, I am also getting sleepy again and questioning whether I might find success in a nap.
It was on July 7th, 1984 at 3pm that my Mom passed over into the spirit world. She’d had a recurrence of her cancer and had spent the last days of her life in the hospice unit of one of the local hospitals. I was … Continue reading Honoring Life
It’s been hanging out around 90 degrees in Rochester today. It wasn’t a good day to leave my water bottle in the hotel room. It was good that I was smart enough to wander through the Arts Center rather than go with my original idea of taking a longer walk along the river. I suspect that feeling of being worn out and the headache that came about by the time I got back to hotel room a couple of hours ago might have moved into seizure territory had I done differently.
It’s funny. I take much better care of myself now than I used to. Not having my water bottle didn’t mean that I didn’t drink water today. I had a sparkling water with lunch and a couple of glasses of water with dinner as well as the water I’d drunk before I left the hotel and a smoothie in the morning. Once upon a time I might have had the smoothie, but lunch and dinner probably would have included a cherry coke or some other sugar and probably caffeine laden poison. Now water just makes sense to me. It’s the thing that I drink most. I don’t eat much junk food either. It really is something that I have as a treat and even then I tend to go for just a bit of something really good. Life has changed me. I see my relationship with my body differently and treat myself better. It’s good.
Anyway, today’s adventures at Mayo were mostly pretty simple. I started with my blood draw and nasal swab. The blood draw waiting area had the grumpiest group of patients I’ve seen at Mayo, but I didn’t find it bad at all. My blood was drawn by a student and she did really well. I was impressed. I know that my veins can be tough and even that early in the morning I was wondering if I was a bit dehydrated.
The nasal swab was quick. It sucks, but that’s no surprise. It’s just not going to be pleasant to have a q-tip shoved up your nose. That’s an obvious reality. I left there thinking, “I am really glad that I don’t have Lauren’s (the q-tip person) job. Can you imagine putting q-tips up people’s noses all day? Well, I am thankful that she does it and hope that she finds reward in her work.
After that was a trip to the allergist. She’s not convinced that the diagnosis of DRESS Syndrome that I got back in January was correct. She’s wondering too why my rash reappeared several times since then. But, since it’s gone right now it’s a bit tough to tell. She’s going to keep studying the information that we have. I’ve agreed to see about getting a skin biopsy if the rash reappears again. Personally, I think my hope is that whatever it was is just done.
The most interesting thing though about the visit with the allergist wasn’t so much what I learned about the issue, but what I learned about my memory of the past few months. Thankfully, she could access all my records because even with my notes I had jumbled dates and wasn’t even certain what month things happened. It was really interesting. It leaves me wondering how much my memory is being impacted by my seizures and medication and just how much is the stress of life these days, but it was a mess. I suppose I will learn more when I have my memory tests next week.
Until then, I am on vacation enjoying the sites of Rochester and, honestly, mostly just taking advantage of being in a larger city than my current home of about 5,000 and eating a whole lot of good food at all the sidewalk cafes!
Yesterday was the first day of my Mayo Clinic “retreat.” Ann and I arrived at my hotel shortly after noon. It brought back memories of the dorm rooms at UWSP, not bad and it provided a good, not too expensive place to sleep. Ann wanted to get back before rush hour in the Twin Cities and I couldn’t eat lunch because of my PET scan in the afternoon so she left and I took the opportunity for a much needed nap.
After my nap I walked to the Mayo campus and, with the guidance of some good Mayo workers, found my way to Charlton North and the area where my test would take place. It was my first PET scan, I think. I’ve done MRIs before. Sometimes I am fine. Sometimes I find the tube and all that it entails just a little crushing, not to the point that I need sedation, but just to that point where I need to remind myself that yes I can breathe, it will be okay, it’s almost done. Yesterday though was very smooth, an interesting journey through my mind.
I don’t quite understand how the PET-MRI works, but for those who haven’t experienced it here’s what happens. With a PET scan you get an injection of fludeoxyglucose more simply known as an F 18 injection. It’s a radioactive sugar injection. Yes, I got to mainline sugar! Then you sit in a dimly lit room for about a half hour not doing anything, but waiting for the F 18 to just work its way through your body. It’s a nice opportunity for those who meditate and those who keep an internal radio station of all their favorite songs. I do wonder how more antsy people especially kids handle it though?
Then, the staff walk you to the room with the scanner. It’s a long tube. They help you put in ear plugs and lay down. Then they gently make things comfortable, sort of packing you in like a holiday gift. You can’t move while the scan is happening because it will mess with the pictures. Once you’re all packed in they hand you a ball to squeeze if you need anything and the fun begins. They go to their control room, turn on the scanner, and slide you into the machine.
I closed my eyes as I entered the machine. I wanted to keep myself centered and not to see how small the space was around me. The noise of the machine was loud. It began with a frequency that felt like woodpeckers just outside doing their work, moved to sirens, and to other sounds, came back to the woodpeckers only they’d moved to the left or the right. The sounds kept changing. Then came vibrations. At one point it almost felt like a the tremors surrounding an earthquake. The interesting thing though was what was happening in my mind.
As the test started I tried to think calming thoughts, but I quickly realized that as the sounds and vibrations changed so did what was happening in my mind. Soon I just opted to go with the film that was playing for me in my head. It was a great show. Much was going through pictures of my life. There were a lot of little things; remembering the front steps where I used to sit as a child, the glasses with the wild animals painted on them in my parents’ liquor cabinet that we used for social gatherings, my first communion, just a whole array of generally happy and comforting things from my life.
Then, late in the scan, we came to a point where it changed. It didn’t get scary or anything, but the memories went away and in their place came colors, mostly blues and yellows I think. They were more vibrant than any I’d ever seen seen before. They shifted and changed, a sort of flowing cloud I suppose. It made me think a couple of things. First, I thought “wow, this is what psychedelics are like!” Then, I thought “yep, left front temporal region, I think they just found where my seizures are located.”
I’ll be interested in finding out if what I saw in my mind really matches what they found in the scan. Our brains are incredible things. This has been a fascinating journey so far. I am hoping for mellow day today with blood and COVID tests and a visit to the allergist.