A New Beginning

It’s been over a month since my last post. A lot has happened since then. I got laid off. My last day at the Center for Small Towns was yesterday. I found a new job. I’ll be moving back to Wisconsin in a few weeks to direct Kinship Mentoring of Columbia County. I’ve found a place to live. I’ve been doing all the pieces that it takes to move from one place to another. All of this on top of my VNS implant, dad’s death, and just living in the reality of the COVID pandemic made for a very intense summer.

It’s been a challenging three years here in Morris. There are good people here, definitely some that I’ll miss. I loved working with my students and the community partners. But, the Center for Small Towns had been getting less and less university support for years. I was too optimistic thinking that it could be anything but frustrating to work in that type of situation. It feels freeing to be done and like I really am starting off on a new adventure and new phase in life.

It feels important to me to treat this moment like I would a new year and to name the things that I want to hold myself to as I launch this next phase. I don’t know that this list is complete or how long any of these things goes for. But, these are the things I’m thinking about to do for myself in this next phase.

  1. Getting back on track with my healthier eating habits (cut out that sugar)
  2. Getting the phone and computer out of my bedroom
  3. Learning guitar
  4. Learning Anishabemowin
  5. Becoming seizure-free
  6. Cutting my social media time and increasing my fun stuff time
  7. Keep my new home in a comfortable order
  8. Becoming an active part of my new community

I’m sure there will be more to add and to change as time passes, but that’s the list for now that I want to focus on for now. It feels good to be starting again.

Wishing you all good adventures!

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.

Mixed Feelings

What strange times. I continue to find myself flying about in this bizarre whirlwind of transition where I don’t quite know what to feel or how.

I spoke with a financial counselor this afternoon. I’ve worked most of my adult life in small nonprofits and childcare, so low paying jobs without a lot benefits beyond feeling that I’ve done some good in the world. That means I’m like most Americans haven’t built up a big nest egg and have a few bills to deal with, nothing major. I decided to talk with the counselor though after becoming a beneficiary of a small sum of money. I wanted to use it the best way possible. She was really helpful and we were able to figure out a good plan to address my debt and build my savings. I left the conversation feeling really good. Yet, it feels strange to feel really good about those kinds of conversations.

Mixed feelings came with my VNS implant too. It’s an amazing thing to be there in the doctor’s office getting this little device turned on, to feel that little tickle and feel my voice change, to know that it might really be the ticket to regaining my life and stopping my seizures. Yet, when it was done I couldn’t call my Dad to tell him how it went. All I could do was rely on the belief that he already knew, that he was there in the room with me, taking care of his little girl.

He keeps taking care of his little girl, helping me with my finances, making sure I’m safe and doing all that he can to help me be healthy again. It’s making me so happy, so thankful and at the same time I just want to see him smile, to give him a hug, to tell him I love him one more time. I guess that’s how it always is and that’s how it will be. I am so thankful though and amazed at that power, that power of love that keeps taking care of his baby Amy even after his body is gone.

A New Song

My mom loved to sing. She sang all the time. She was part of the church choir. She sang while she did housework. She sang in the car. She sang while she rocked the grandbabies. She even had a really annoying little ditty that she sang to wake up sleepy kids who were in danger of being late for school. I miss that voice. I’ve been thinking of that voice as I prepare to get my VNS to turned on in a few days.

I’ve sung since I was a baby. Mom and I sang together all the time. It was something we both loved and that brought us together. These last few days I’ve been listening to a lot of the old country songs we used to sing together. What an amazing era of music. I don’t sing as much as mom did, but I still sing quite a bit and find it to be one of my greatest healers

The VNS is implanted in my chest with wires that go up into my neck and wrap around my vagus nerve. It will send a small electrical wave every couple of minutes on a regular schedule and whenever my heart rate jumps or it’s manually set off. When that electrical impulse goes off it’s likely my voice will change, getting a bit scratchy or maybe causing a cough. I find myself wondering if I’ll be able to sing.

I was listening this morning to Dolly Parton, Loretta Lynn, and Tammy Wynette singing together and thinking about mom. I was reminded mom never sang like any of these women. I don’t sing like any of these women. It doesn’t matter. There are times and places where hitting the right note is important, but the thing that really made my mom’s singing beautiful was the way that her heart showed through in every note whether her pitch was perfect or not. My voice will scratch. I might not be a good addition to a choir again, but I’ll still be singing along with the radio and with the little kids in my life and that’s what it’s all about.

Fears and Hopes

It’s been ten days now since I had my vagus nerve stimulator implanted. It will get turned on in just four more days. The healing has been smooth other than a little itchiness and redness from the surgical tape. The tape is now all gone, so hopefully the redness and itchiness will be gone soon too.

Such a small thing and such a huge thing at the same time. The device is only about the size of a half dollar. The surgery took less than two hours. The healing is going quickly and I keep hearing that there won’t be much scarring. I also keep seeing stories of how stimulating the vagus nerve does a boat load of amazing things. It lessens the severity of, stops, and prevents seizures. (That’s why I got it.) It also can apparently help with depression and anxiety, improve metabolism, lower heart rate and blood pressure, improve digestion, and just improve the body’s response to stress. It’s both really wonderful to hear all these things and frightening.

It’s been seven years since I was diagnosed with epilepsy. I suspect that it’s been closer to twenty years that I’ve been having seizures and all the stuff that goes with that– the stress, the depression, and growing anxiety and all of those pieces. So, I find myself both very much excited about the new adventure and all the possibilities and at the same time asking myself what happens if it works? Who will I be without these things to define me? And, of course, wondering about whether or not it will work or if all these great stories I’ve been hearing are only dreams for me.

I guess we’ll see. Some people say they see results quite quickly. For most it takes months. I’ll do my best to keep telling the story.

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.

A New Life

I’ve done it. Surgery was this morning. I got to the hospital at 5:45 and went into the operating room about 8am. I guess surgery started by 9 and I was done about 11am.

The anesthesia was the worst part. Thank goodness for good friends. Ann got us a hotel so I didn’t have to try to make the ride back to their house. Instead, I just had a mile ride to the Kahler Suites and an afternoon to sleep and get my stomach back under control.

I can’t turn my neck. It will be a few weeks to heal. I’m checking to see if Buddy can go to doggie camp for the rest of the week. After that I’ll need a dog walker for at least a week. After that we should be back on track.

I am really feeling proud and relieved. I did it. I am starting a whole new part of my life. Mom and Dad would be so proud. There it is. My VNS is implanted, close to my heart– right where Mom and Dad are. Just a couple weeks and we’ll turn it on. Let’s hope this thing works!

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.