Category: health

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.

Seeing Doughnuts

It’s funny how those little moments surprise you.

I just stopped at the grocery store. I’ve been letting a little sugar sneak its way back into my diet in recent weeks since Mayo doctors assured me that as long as I keep my diet in balance it shouldn’t be a problem to eat. Anyway, I decided to pick up a couple of creme rolls. So, I took a quick walk down the block to Willie’s. I wandered into the bakery department and there they were– doughnuts, the conveyer of memories.

I had no interest in eating doughnuts, but they bring back memories. My dad was a Krispy Creme junkie for years. Oh those things were awful! But he always had a box at his apartment and was passing them out to whoever visited. He was so kind and generous. I just found myself in that moment seeing the doughnuts and thinking– “Dad, he’s gone.”

It’s such a strange thing, such a strange time when I can just be walking through the grocery store and just suddenly realize–“Oh my god, my dad is dead.” It still seems unreal. I still want to buy him a box of those horrible doughnuts. Life is strange. Dying is stranger.

What Can I Do?

It’s been nearly two weeks now. In typical times, I’d be back in Wisconsin probably getting ready to make my trip back to Minnesota. Family would be all together. We’d have laughed and cried and laughed again. We’d have all come together with prayers and stories. We’d have gathered together in Dacada around the spot where Mom lies and laid Dad’s ashes down beside her and maybe gone over across the street to have Uncle Nicky make us all a Old Fashioned to commemorate the day.

These aren’t typical times. Instead of coming home from Wisconsin and time with family, I just got home yesterday from Mayo clinic and surgery. The last two weeks have mostly been a blur. Coming home from epilepsy monitoring, Dad’s death, going back to Mayo for surgery, spending some time at Ann and Christopher’s house.

Today is the day that my tears start to flow again. Tears of thankfulness for the dear friends who’ve held me together and been watching out for me in these recent days. I really do feel so incredibly lucky to have been gifted with people like that in my life, those friends and family who are smart enough to see when I need them and to step right in, not waiting for me to figure it out. I tend to be rather slow in figuring out such things for myself.

Tears today too as I spend my day just resting and relaxing. The pause is giving me the chance to just randomly have these moments where my system seems to say “Dad is dead.” It’s coming to that point where it’s real and none of the age old ceremony that we relied on is there, only the questions of what is the right way to honor the passing of our loved ones now?

It’s different than when I was a little girl and Mom died. First, I was a little girl. Secondly, I was surrounded by family and friends and immersed in the ceremonies. It was too much for a little girl. The pain was far too real and too constant. This is different. With Dad I know it will be okay. I know he’s found his peace and that the sadness is my own. I know that I will always miss him. That’s not going to change, but I’ll laugh at the stories and seeing his grandchildren smile in the way he used too will touch my heart and give me faith. Still, this is that sneaky sadness and it just hits me with no forewarning, tells me that he’ll never give me one of his Dad kisses again, that I’ll never get to hug him one more time. All I know in that moment is that I want that one more hug, that one more Dad kiss, and it’s all gone.

I guess hugs and kisses are something that are handed down. My Dad hugged and kissed kids and grandkids like his aunt Sr. Christine used to. Maybe the only thing to do is keep handing them down. Keep the hugs and kisses going. Keep telling the stories. Honor the spirit. Guess I’m just going to have to be the old auntie with hugs and kisses. That’s what I can do.

You know it doesn’t really matter what else we do. Nothing really is bigger. Dad used to make point of giving me a hug and kiss every time I came to visit. We always made a point to tell each other that we loved each other. As a young adult, I found it kind of goofy. As I aged and Dad got old, I came to appreciate it and recognized how much it meant to him. Now, I think I’ve come to realize the gift he gave me in that little action. That little act told me that I was somebody special and now I get to always carry that with me.

Wow. If there’s someone in your life that you value, please tell them again and again. Please give them the gift that my dad gave me and let them have that treasure of feeling value and self-worth. It is an incredible gift.

Life on My Mind

My dad died exactly a week ago today. Two weeks ago was the 36th anniversary of my mom’s death. Tomorrow, I go into surgery.

No, I’m not concerned for my life. I am looking at my surgery as a step in my mourning process though. They gave me so much giving me life. Getting my VNS implanted now seems the way to say thank you. I have heard so much about the benefits. I am so hopeful for this opportunity to regain the life that was given me.

I can only imagine what might be. Will I be able to focus better? Will I remember more? Will I regain energy? How much will my seizures be reduced? Will I drive again? What dreams might I achieve? Will I act again or maybe go further with my writing? Maybe get back to running or the gym? There are so many options so much to do. So much life to live.

It is a strange thing. The VNS is a small device. I understand that it’s about the size of a half-dollar. It’s like a pacemaker for the brain. That’s what is odd to me. I am only 48. It feels strange to have something implanted in me and to have it compared to a device so often used for the elderly. As a middle-aged unmarried woman with epilepsy, I run a high risk for SUDEP (Sudden Unexpected Death due to Epilepsy). My VNS device might protect me. It also reminds me right now of my mortality. Right now, I am trying to remind myself that someday dying also means right now living and that living is the focus. Dying will take care of itself when it is time. It’s just a whole lot of life on my mind right now.

Where Strength Comes From

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.

Day Four at the EMU

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!

The Continuing Process

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.

What Would I Want?

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.