Category: VNS

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.

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.