“Sometimes surrender means giving up trying to understand and becoming comfortable with not knowing” – Unknown

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This day. This day three years ago was my breaking point. It was the day I just surrendered to ALS. Surrendered to the disease and the CTE we didn’t know he had. Surrendered to his need to control and be in charge. Surrendered.

We were living in Del Mar, CA, one of the most beautiful places in the country. If you looked to the right from our front gate you could see the ocean. We were so lucky. But on this day, life totally sucked.

The weather had been so nice the last few days. All Duane wanted to do was go to the boat and head out to ocean fish. We had spent the day before at the boat cleaning “relaxing” and prepping for our next trip.  But we had a hospice appointment this day, an appointment we had put off for over a week. We needed meds and to be reevaluated. We couldn’t put this appointment off any longer. 

The morning was so nice – I kept suggesting to go outside, go to the beach or lunch or just sit on the patio. He refused. He was being a jerk, on purpose. He wanted to go to Mexico and fish and I said no. He wasn’t used to me saying no. I dragged, pulled and threw him into the boat way beyond the time it was safe to do so. I drove us 40 miles out, put out lines and trolled for days. It was hard work. Running up and down stairs all day, caring for him, the lines, the fish and driving the boat. But, I always said yes – that’s what you do when someone is dying and they want to go fishing.  

So he was pouting and making the day so much harder than it needed to be. Making up reasons to stay inside. Making up things that “needed” to be done. Needing to pee, poop, eat, try to poop again. Move to the couch, the bed, the bathroom. Any time I grabbed a book to go and read he called me in, within 1 minute, to attend to some new imagery issue. (Even Buddy was getting frustrated). 

The weather turned late in the afternoon (thank god we didn’t go out fishing), it started raining. He wanted to sit outside. I said no, it was raining. He insisted. I transferred him to his wheelchair, with no help from him, wheeled him around the house and out front, and transferred him to his patio chair. 

I went back inside, he called me out. Saying that he was trying to make me happy by sitting outside. Saying that he did what I wanted. He was being so difficult. I went inside. He sat outside in the sprinkling rain until our nurse go to us. He told the nurse that I put him out there and left him in the rain alone, that he had been begging for me to bring to bring him in. 

Luckily the nurse had seen this behavior from him before and knew what he was doing. He “told” me to help him get back inside so we could have our appointment. The rest of the day was fine. Duane acted like the morning had never happened. 

– xoxo Victoria

 

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“Life ain’t always beautiful Sometimes it’s just plain hard Life can knock you down It can break your heart … No, life ain’t always beautiful But I know I’ll be fine Life ain’t always beautiful But it’s a beautiful ride.” – Tommy Lee James / Cynthia Evelyn Thomson

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My sister and her husband are away for their anniversary (YEA!!! CONGRATS!!!), so my niece and nephew are staying with my parents. I hung out with my niece for a few hours today and then went to my parents house to eat dinner with them all. 

As I sat on the couch watching tv I felt my anxiety rising. Similar to how I sometimes feel at my sister’s house (or anyone’s house really). It is SO loud. Everything is so loud. Loud talking, loud laughing, loud tv, loud chewing and really loud walking … I mean stomping. So much stomping.

Every time I am at someones else I think – why are they stomping so much? Why can’t they just walk quietly? Take your shoes off, they are. Put socks on, they are. There is nothing that quiets the stomping. The loud, pounding stomps throughout the house. 

Tonight I realized I have not lived in a home with some else that walked in 5+ years, it has been 5 years since I lived with someone that “stomped”, 5 YEARS?!?!?!?! How is that possible? 

The truth is they aren’t stomping. They aren’t loud. They aren’t talking, laughing, chewing or playing loud. I am just used to the quiet. I have lived so long in the quiet, in the silence.

It makes me sad. I used to love the laughing and noise. I loved being around people and having people around me and now … now it gives me anxiety and makes me uncomfortable. It shouldn’t be that way. 

For a long time I’ve had anxiety at people’s homes, when lots of people are at my home  and around large groups of people and now I realize why. I haven’t had that in so long. And that silence, although deafening and heartbreaking, is my normal. 

Knowing is half the battle – isn’t that what “they” say. 

Wish me luck at family dinner the next two nights! hahahaha

– xoxo Victoria

P.S. I am grateful to spend time with my family and anyone that invites me over, I’m just sharing something that I realized tonight!

“Choose to focus your time, energy and conversation around people who inspire you, support you and help you to grow you into your happiest, strongest, wisest self. ” – Karen Salmansohn

 

Today I finished Reiki Level 1. I received my first 4 attunements and am able to practice on myself, other people and animals. Next month I will hopefully take level 2, and will be able to practice in the hospital. 

Reiki is channeling energy. You have 7 chakras and reiki works to move energy through them. (That’s the basic basic).

We spent the class getting our attunements and practicing. I was paired with our instructor – I feel incredibly fortunate about that. She performed reiki on me and was able to enlighten me on so much. After multiple sessions and clearings she told me that my throat and heart chakras were blocked. Along with my solar plexus chakra a little. This translates to I have a lot of information to share and stuff to say but I am holding back. I just giggled.

She (the energy) was right, I have been holding back. I have so much I want to share and talk about (on both blogs) but I have been holding back. Afraid of what people will say or think about me. But you know what – that’s none of my business. What other think about me is none of my business. I believe and feel the way I do.  I and the information will find the right path and people.

I am so excited to started really sharing with you all. 

– xoxo Victoria

P.S. If you want a reiki experience let me know! 

“She says, yeah, he’s still coming, just a little bit late He got stuck at the laundromat washing his cape … She’s waiting for Superman To lift her up and take her anywhere Show her love and climbing through the air Save her now, before it’s too late tonight Oh like the speed of light And she smiles” – Martin Johnson

Today I bought paint. A 5 gallon bucket weighs way more than I thought it would. But I got it from the store, into the car and into my house. I stood in the store and sent 15 pictures of paint swatches to my dad in Mexico so he could help me decide what colors to pick. I know – lame. 

I’ve never bought paint before. When I told Duane I wanted my bathroom painted, I came home form a work trip and I had a new bathroom. I wanted a pink bedroom and lime green living room in my tiny Vegas rental, Duane did it. New kitchen cabinets, closet organizers, built in dog door, a motor on my pontoon … Duane did it. 

He did all of it. Before him, my dad did. Now I do, with A LOT of help from my dad. HAHAHAHAHA 

People ask me why I’m single or what I’m looking for… 

He needs to be very handy – I am NOT going to be the handiest one in the relationship. the other day I was called “one of those girls” because I can fix my own stuff. I don’t want to be “one of those girls”, but I am proud that I am. Proud that I was taught how to do things and take care of things on my own. Proud I don’t have to call someone when something breaks. He also cannot be a fireman or military member that served in the middle east (60% higher chance of getting ALS), no family history of ALS – or any terminal illness, has a job, no crazy mom, no shrinks in the family, must know how to tow a boat, do household maintenance, be taller than me, likes fishing and camping, makes me happy and loves dogs. 

I’m picky, I know, but I’m allowed to be. I’m lonely but not willing to settle. I’d rather be alone than unhappy. 

I’m waiting for Superman. 

– xoxo Victoria

“But somehow I can’t shake, The feeling I might make, A difference, To the human race.” – Avenue Q

From flip flops to compression socks, filleting fish to taking vitals, how has my life changed this much? I never imagined a life where I wouldn’t be on a boat, on the water catching fish and drinking beer. I never imagined buying compression socks, wearing crocs or taking blood pressures, and yet here I am! HAHAHAHA. 

This new life has its perks, health insurance, 401K, a paycheck. But it lacks freedom, afternoon naps and I’m stuck inside for 12 hours a day … and Buddy hates it! 

I had a funny blog planned for tonight comparing my past to my present and where I’m going, but my heart isn’t in it tonight. I received a message tonight from a friend. She told me her friend’s boyfriend was diagnosed with ALS and asked if it would it be ok if she reached out to me. YES!!  Absolutely!!  As it turns out I know him, or knew him many years ago – we spent a fun filled summer working alongside each other at the waterslides  He has an aggressive progressing ALS. An ALS similar to Duane’s. My heart is broken for them. For him, for his family and his friends. 

ALS is a monster. An unrelenting, non-discriminating horrible monster. People are diagnosed everyday. People die everyday. And yet so little is still know about it. 

I have no real words tonight. I hate ALS.

Hug your people. Love your people. 

– xoxo Victoria

“Here’s to whatever puts a smile on your face Whatever makes you happy” – Brandy Lynn Clark / Lori McKenna

Disclaimer  – This is a post I wrote for my other blog, but I thought I should share it here as well, sorry if you’re seeing it twice. 

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(That’s me and my dad wearing matching our beer belts at the Reno Rib Cook-Off)

Tonight I was sitting in the lobby at hot yoga, chatting with the instructor, waiting for class to start. During a lull in the conversation a guy, in his mid 30’s (I’m guessing) looked at her and said, “What do you do for a living? This can’t be it”. Those of you who know me, know what my face looked like when I heard this. My head snapped around so fast I’ll be massaging out the whiplash for a week. She looked down and started talking and explaining that she was a substitute teacher as well as a yoga instructor. As she stammered her words and explained her choices, he lost interest and turned away. 

This bothered me more than I can explain, I have been on the receiving end of this question for the last 20 years. I thought about it all through class and when class ended, after a few minutes in shavasana, I grabbed my mat and beelined out of there. 

I found her, I looked at her and said, “That guy earlier” she immediately looked down and said, “I know, I just …”. I grabbed her hand and said “You can do what ever you want. I doesn’t matter what anyone else thinks or says.” I went on to tell her something my dad had said to me many, many years ago when I dropped out of college and walked away from a swimming scholarship. He had to come pick me up and bring me home. “As long as you can put a roof over your head and food on your table it doesn’t matter what you do, AS LONG AS YOU ARE HAPPY! I have always lived that way. I have had an amazing life and I have been so lucky. I have done what I wanted and I love my life.”

Yes, there have been hard times and heartache but I have had and do have the most wonderful life. I’ve been stuntwoman in live shows and movies, been a model in print ads and commercials, had a juicing business and a talent agency. I’ve been a bartender, a caregiver, a server and a stay at home dog mom. I am currently a NA in a hospital and I have no idea what will be next. As long as I’m happy who cares. No one else has to wake up to my life everyday. No one else pays my bills, cooks my food or is responsible for my happiness. 

In the last few years my dad’s advice has taken on a new meaning for me. It means more now. After watching Duane, and so many others, get sick and pass away I realize that life is short. You never know when your time will be up. You owe it to yourself to be happy and live the best life you can. It’s not about having a huge house, or money or stuff – you can’t take that with you. Be happy, enjoy everyday you can, because you never know when it will be the last one.

– xoxo Victoria

“But it’s all an adventure That comes with a breathtaking view”  – Benj Pasek / Justin Paul

“I took advice no fool would take I got some habits I can’t shake I ain’t the sharpest knife in the drawer But I know enough to know If you’re gonna be dumb, you gotta be tough” – Rick Giles / Steve Bogart

I can’t stop laughing. I spent 40 minutes looking for these pictures of Duane when he crashed wake boarding. HAHAHAHAHAHA!!!! I remember laughing so hard because he got hurt, that’s just what we did, he was doing something on a wakeboard he had no business doing and he crashed … hard. It was so bad he couldn’t go to work for a few days … this was not the first time or the last time he was in this position. 

Well guess what happened to me today. I crashed … hard. I don’t think it was one crash – I think I slammed into the water, bounced and got slammed into the water again, with my head bouncing at least 4 times. So dumb. Duane would have been laughing hysterically if he saw what happened (after he made sure I wasn’t dead).

Back in the day when we crashed our options were this “high-tech” ice machine thing, that circulates freezing water around your injury and controls swelling and pain, or to shake it off. Its actually really good, I still have it! But today I opted to go a different route, hot yoga, CBD cream and the massage chair.  I have to be up at 4am for work tomorrow so lets hope this works … 

– xoxo Victoria

Duane was 40 when he started having to recuperate from crashes … I hope this isn’t a sign. 

“Heads Carolina, tails California Somewhere greener, somewhere warmer Up in the mountains, down by the ocean” – Tim Nichols / Mark D Sanders

Two years ago “heads” won. 

I can’t believe its been two years – it feels like 10, even thought I am still constantly lost! hahahaha

The past two years have been hard, so incredibly hard. Moving cross country in and of itself is exhausting, but couple that with loss and grief – it’s immeasurable. I have felt like I was barely hanging on more times than not. I have felt lost and confused more often than not. I have doubted every life choice I have ever made more times than I can count. I’ve cried over lost friends and family, questioned what to do with my life and doubted myself almost every day. 

But on this two year anniversary of crossing in North Carolina I can say I have an idea of what I want and what that looks like. I have come to terms with many types of loss and heartbreak. I have learned that no life is perfect and it is ok to have questions without answers.

Life has not been a fairytale, it isn’t happily ever after (so far) but its good. I have finished a little more school, published a book, made some friends and started a new job. I have a plan, a very loose plan, but still a plan (kinda). I have goals and so much that I hope to accomplish in the next year.

I am not sure I will stay here, but I am so thankful that I had a soft place to land. I am thankful that so many people have and continue to welcome me with open arms. I am lucky that I have so much support, near and far and so many people that love, support and believe in me. 

So to all of you, here and in California (and everywhere in between), thank you, I love you all and am planning on making another cross-country trip soon.

– xoxo Victoria 

I will be in Nevada in January for sure. Hopefully California and Arizona too! 

“Been goin’ through Hell gettin’ over you But it don’t hurt, it don’t hurt like it used to No it don’t hurt, it don’t hurt like it used to I’m finally gettin’ out back into the world Life is good,” – Billy Currington / Blake “shy” Anthony Carter / Cary Ryan Barlowe

Two years ago I “dumped” Duane in the ocean. I did exactly what he wanted. I respected his wishes and the way he wanted it all to happen. 

No one really knows what happened that day, or those surrounding July 18, 2017. It was an absolute nightmare. It was constant fights with my in-laws, betrayals and a refusal to help.  I get it, they lost a brother and a son, but I also lost my husband and best friend. The majority of that family treated me like I was the hired help and it really showed during that time.  

Another little fun fact that most people don’t know. Many members of his family, most of them actually, have never spoken to me again since that day. I have received nasty emails, have been talked about, lied to and lied about. I have received calls from other people telling me what is being said and being done behind my back. 

I not only lost my husband, but I lost everyone that had been a daily presence in my life for the past two plus years (And actually in my life for over a decade). All but one.

My grief journey has been full of anger and resentment. I have struggled with this on top of struggling with the loss of Duane. I have never written about this because it hurt so much. It hurt that I never heard I appreciate you, it hurt that I never heard you are doing a good job taking care of him. I never heard thank you for keeping him alive for so long and giving him a life only you could give him. 

In my mind I couldn’t understand how people who were, well I thought, so close to me could just disappear and they I remember that that is the type of people they are. We went years not speaking to some of them because we were “living in sin”. Others lied to me for months about various situations. They kept lying to cover their involvement and to this day still lie about what happened.  

Lately I have realized something – I don’t need those type of people in my life. I never did. I walked on eggshells for two years while I was caring for Duane. Constantly being second guessed and questioned about our treatment decisions. Being lied to talked about. That is no way to live and I refuse to live that way ever again. 

My life is better without them. It is lonely. But it is better. People wonder why I am so picky about who I spend my time with … this is why. I would rather be alone that be in that situation again. 

– xoxo Victoria

“If I never saw you once again If suddenly you met your bitter end I’m not sure I’d ever understand But I could say I loved a good man … Oh your tender heart, Taught me the hardest part that I could never learn And everything you do promises I love you If you ever slip out of my hands I could say I loved a good man” -Anthony Cameron / Garth Williams

 

You’ve been gone 2 years, my my my have I grown and learned. I think you would be proud. You would be, even if you wouldn’t want to admit it.

Everyone reached out today, I LOVE that they did that. I LOVE all the pictures and memories I was sent today. I LOVE that they still love and miss you.

They were worried about me. Concerned about me. Wanted to make sure I was okay. And you know what I was. It has been two years, but today is just another day. I miss you no more today than I did yesterday and I will tomorrow. I love you no more than I did yesterday and I will tomorrow. The fact that you died sucks, but it sucks everyday. Today is the anniversary of you being pain free and no longer suffering, and for that I am so thankful. The suffering you endured I wish on no one.

Today I set goals and promises to you.

  1. I promise to finish the book you told me to write. I remember standing on the back of the big boat in San Diego, after getting out of the water from cutting fishing line and seaweed off of the props and hooking up the pipes for a bait tank. I had cuts from the knife on my fingers and my jaw hurt from biting down on the zip ties. But I did it, and you taught me how. But as I stood there dripping wet, chugging a beer you said, “When this is all over, you need to write a book, but just the good stuff”.  I remember us laughing when you said “just the good stuff”. That book will be finished this year, it will be full of the good stuff but our story is not complete without including the bad stuff too!
  2. I promise to catch a marlin. We were so close so many times and you wanted it so badly for me. You taught me how to drive to them, set the rods for them and hook them. I am ready to catch one.
  3. I promise to get in real shape. You always said we were all show and no and go hahahhahahaha  …. It’s time to change that! I am 40 after all. The fact that you were 40 when you were diagnosed has been heavy on my mind these last few months and I know I need to make every effort possible to stay healthy for as long as possible. I owe it to you.
  4. I promise to try. You wanted to meet someone and get married again. You didn’t want me to be alone. I’ll try. I promise.  
  5. I also spent A LOT of money on boat parts today … you would be proud.

I love you and miss you today, just like everyday.

– xoxo Victoria