Category: health

Restart

I wonder what it is about January that makes it such a challenge? There seems to be something maybe in the air or in my being or maybe just in the cold that makes my body reject the entire month. This year it seems the entire country is having to scrape its way out of 2020 to make an attempt to start again and we’ve not quite made it there yet.

I often look back at my memories on Facebook and I’ve learned from this practice that somewhere right around Christmas or shortly after is often time for a seizure. January is time for a nice head cold that’s bad enough to put me in bed for a few days. It’s also a time for dreams and nightmares. A few years ago I also threw in the excitement of appendicitis. Last year I spent New Year’s at the Epilepsy Monitoring Unit at the Mayo Clinic hoping for seizures and asking for cold medicine.

This year I’m laying in bed waiting for my COVID test results and hoping it’s just another head cold and pondering the meanings of my most recent nightmares. I don’t normally have a lot of bad dreams, but I’ve had three in the past week. I suspect it’s both the powers of January and the changes in my life once again.

I’d thought I’d found the perfect job a few months back, but it became clear pretty quickly that the organization wasn’t ready for staff yet and that there were some people in leadership holding views that I believe to be quite harmful especially when mentoring children. I love mentoring, but not at the cost of any child. So, I had to leave. I was extremely lucky to land on my feet. Some friends of mine run The Memory Project and offered me a role which allowed me to leave the group that I was with.

So, after two intense dreams that might be called nightmares, the first of which I found myself I found myself at a circus with a tiger and a panther sniffing at my feet as I sat on a bench unable to move and the second of which I found myself again unable to move in my bed with an intruder coming in and about to rape me, I made the decision to quit my last job and start my new one.

The circus dream was an interesting one. The ringmaster was there and he told me that I didn’t have to fear the tiger and the panther. He told me that they were mine, wouldn’t hurt me, and that I had the power to move if I chose. It was interesting doing a bit of research later to find that the panther and tiger tend to be symbols of feminine power, creativity, strength, and positive change.

The rape dream was another recognition of my own choices and power. As the perpetrator attempted to attack me, my inner being assured me that this wasn’t real, told me that I had the power to move. It took great strength, as if I were breaking handcuffs holding my wrists, but I moved my arms and I awoke and was safe again.

Sometimes dreams tell us a lot. I decided I had the strength to take the leap into a new world. For the next six months or so, I’ll be sorting student art work, seeking out some freelance writing, working on a book, and deciding what I want to do next as my role with the Memory Project is just short term.

Still, my dreams aren’t gone. There’s still something figuring itself out. In last night’s dream, an intruder had again broken into the house. This time a friend told me she found my dog Buddy locked in the bathroom with a loaded handgun and an open window. She was worried that the intruder was still on the premises. The house filled with neighbors, most of whom I didn’t know as I tried to call the police. Buddy wasn’t hurt. I lost track of him for a few moments and was worried he might be, but then I saw him playing happily in the growing crowd.

I woke puzzled, but realized that in my current rental it would be impossible to lock poor Buddy in the bathroom with a loaded handgun since one of my bathroom doors is actually a shower curtain. Ah, the wonders of rental living. But, it does help me recognize the impossibility of the dream and go with Buddy’s joyous innocence approach instead.

With that, I will lay here and rest a bit more, build up my energy and get ready to leap into the next new adventure with faith that the tiger and panther and Buddy will all celebrate with me this new chapter in life with joy, fun, love, creativity, and all else it offers. Take good care and stay well my friends!

Starting the New Year

For the last few years I’ve posted my New Year’s resolutions here. This year I am a bit late, but that’s okay. 2021 seems to be getting a slow start separating itself from 2020, I can do the same. We humans have a strange time to start a new year these days anyway. It’s not the solstice or the equinox. It’s not the beginning of a new season. It’s just a day it seems to me. Anyway, moving into the goals for the upcoming. First, we start with my resolutions from last year.

  1. Getting my seizures to stop
  2. Getting to my goal weight
  3. Reading at least 12 books
  4. Cutting my screen time

Well, I got my VNS and my seizures have been been roughly cut in half and those I have seem to be less intense. So, I’d say I did pretty good with that one. On getting to my goal weight, honestly, I haven’t really worked on it. I feel pretty good about not gaining any weight and actually losing a couple of pounds during COVID. I think it’s a goal that I can let go of. I think I’m on book 15 or 16 now. A few of those were ones I read before, but they were good enough to read again. So, success on that goal. I can’t say the number of hours by which I’ve cut my screen time, but I feel certain that I have cut it. I took Facebook off my phone. I go out hiking and to dog parks more often. I’ve made a regular practice of daily guitar and piano practice, time for household tasks, and reading time all of which take me away from the screen. I’m guessing that I’m probably dropping 1-3 hours a day. I’d say I did pretty well in 2020 toward reaching my goals.

I think 2021 will be for continuing some these goals and adding in a few new ones.

  1. Becoming seizure free
  2. Reading at least 12 books
  3. Continuing to keep my screen time in check
  4. Writing a children’s book
  5. Finding my Ikigai (Japanese concept meaning reason for being)
  6. Getting back to being intentional about exercise 3-5 times a week

This should keep me going and keep me flowing. Wishing you all well in this year to come. Take good care.

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.

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.