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. 

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! 

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

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

We LOVED the 4th of July! Fishing, fun and fireworks! Boats, beer and bikinis! hahahahaha We always saw the most epic firework shows!

Today I realized there was another thing I missed about Duane – something that I hadn’t thought about before …

When there was a disagreement with people in my life Duane always had a witty comeback (something I never have) and then the ability to load the boat, pack snacks and take me somewhere to fish where we wouldn’t have phone reception for a few hours, or days. It was so nice to just leave all the crap behind. He would give me that last closing statement and “we’re out”!

He had this ability to make you want to leave it all behind and to make you realize life is so amazing and can be so peaceful and beautiful without all the bullshit. I didn’t worry when he said say this and we’re done, lets go. 

I miss that. 

– xoxo Victoria 

P.S. How tan were we? (Other than my face) hahahahaha

Happy Birthday Duane! Today you would have been 47 years old!!!!

Holy crap that’s old! I would have spent all day teasing you and making fun of you for how close to 50 you are. Your come back would have been some smartassy one about how you didn’t act almost 50!

We would have woken up from camping, morning fished and then water skied and wake boarded. We would have ridden dirt bikes, and flown somewhere for dinner.  The day would have ended with a harbor yacht ride eating your favorite – my mom’s carrot cake – double decker like she only makes it for you! 

We always managed to fit so much into a day! Today I bought (you- hahahahaha) a pool, “installed it” and ate that special carrot cake you loved so much. 

I miss you. Buddy misses you. Everyone misses you. I love you! Happy Birthday!!

– xoxo Victoria

I don’t talk about loneliness a lot but it’s deafening. Even with the tv on, music playing and a dog barking the loneliness seeps in. 

I am lonely. So so lonely. I have lived in North Carolina for almost two years, and I have just as many friends if not less, than when I moved here.  I have tried. I know I am weird and quirky, I have been called both by numerous people, but I still don’t get it. I will drop anything to help someone. I’m easy going and don’t care what we do. I’m up for anything. Maybe it’s because I talk too much? I’m alone a lot, so when I’m around other people I tend to talk a lot because I don’t socialize very often.  

It’s hard because sometimes I think I have plans and then when it comes to the day before or the day off I never hear from the people. I will reach out and not receive a response. And then right before it’s a half assed text apology and still no real invite. It sucks. 

It’s hard to be the only single one. I am always the third, fifth, ninth or eleventh wheel, I don’t care but I think I am excluded a lot because of it. It makes people uncomfortable for some reason. I’m fine with it, but it bothers others. The thing is … I’m not single by choice and widowhood is not contagious. 

I don’t need pity invites or pity calls and text messages. I’m okay. Just realizing how lonely I really am. I feel like I have given this area a shot but maybe I need to consider moving, or just find an area that is not this area. hahahhaha 

If you are lucky enough to have someone sitting next to you right now, tell them you love them.

– xoxo Victoria

“Loneliness is, like, when you wish someone else was there, and solitude is when you enjoy being alone. I don’t always wanna be alone, but I definitely like pockets of solitude to recharge and come back to myself. I think that’s so important for everyone.” – Jonathan Van Ness

This is an amazing documentary, everyone should watch, NOW. Talk about the power of the mind. True grit and willpower… And LOVE. 

This is Grant Korgan’s story … In a nut shell – he is an adventure athlete that suffers a life alerting spinal cord injury but pushes himself to “ski” the South Pole. Very cool. 

Im not posting this to share a cool movie I saw, I am sharing this for all my caregiving friends. Grant said something during an interview that spun me. Literally spun me. 

Grant was being interviewed and sharing what he was thinking right after his accident. I am paraphrasing here –  He said he felt so bad for his wife. What had he done? He had broken her husband. He had changed their life together. The life they had and he had promised her was cut. He was no longer able to do what they had always done. Everything was different now. HE WAS BROKEN. 

WOW! As these words came out of his mouth tears welled in my eyes. I hit rewind and watched it again, taking it all in and feeling the words as he was saying them. Realizing that Duane felt this way. His frustrations and sadness were made from feeling broken. From feeling like he couldn’t give me the life he always had. (And we did have an amazing life!)  I had never, ever considered Duane could feel this way. I never thought of Duane as broken, never thought about our adventures being curtailed. Never thought our life wasn’t amazing. 

Grant Korgan gave me insight into what Duane was thinking and feeling. The fear he felt when he was diagnosed with ALS. The feeling of being broken, of not being whole, of not being enough.

I’m crushed and heartbroken for Duane. I feel so horrible that he thought this way, that he thought he was broken and that he was “disappointing me”. I hate that he felt like he wasn’t enough. I loved him, still love him and to this day don’t think he was broken. He was an amazing human. 

I wish I had the sense to even consider this thought – I don’t know what I would have done or said but … I don’t know but I hate knowing he felt this way. 

Love your people! Life can change in an instant!

– xoxo Victoria

P.S. They live in Reno and there are so many beautiful shots of Lake Tahoe and Reno – I was filled with wonderful memories of skiing with Duane and our life in that magical place.

P.P.S. Here is his wife, Shawna’s Ted talk – she’s amazing!! https://www.youtube.com/watch?v=-jl51nmLY5k

P.P.P.S. If you tell me Duane didn’t fell this way – you didn’t know him. 

On Friday night I had the amazing opportunity of attending the Vintage Lochmere 2019 to support Team Drea and ALS research. It was an amazing event with wonderful wine, unbelievable food and even better friends. I was honored to speak about Duane and our  ALS journey. 

The event was put on hold a few times during the night. Two massive storm cells came through. Golf ball sized hail, gale winds and torrential rains. It was bad. The event continued and everyone had a great time. 

All I could do was laugh. Laugh at the situation. As the first cell hit Duane’s photo fell and shattered. That was the final sign I needed to move forward. 

Duane always said to me, “ALS is NOT your cause. You don’t need to deal with ALS for the rest of your life. Don’t search for a cure, there will be no cure in your lifetime. But it is your job to help people. You need too help them. But remember ALS is not your cause”. 

I have struggled with this for a year and a half. What am I supposed to do? What did he mean? How do I separate the two? How do I help people and not deal with ALS? In my mind there is no difference. 

This weekend I realized what he meant. I need to help people. Answer questions, help care for them, teach them and support them. BUT I can no longer be immersed in the ALS world. It hurts my heart. There is no cure. Every week I see someone I “know” die. I have great, wonderful friends with ALS and I will continue to be their friends and support them but I need to take a step back a bit. It’s time. 

I have learned so much in the last five years and I will continue to share and help but ALS can no longer control my life! I feel the weight off my shoulders. 

Thank you Duane. 

– xoxo Victoria

I will be the first to admit that I have been very lucky in life.  I have been fortunate to follow my dreams, no matter how many times they changed and have always had the support of my family and friends. 

Today I found out that I didn’t get something that I really wanted, probably the one thing that I wanted more than I have ever wanted anything before. I did my due diligence, did my research, provided the references, followed up but it didn’t matter. This is the first thing that I have gone above, beyond, side ways, backwards and in circles for. 

A bill was recently passed to help family caregivers. They (whoever “they” are) formed a committee of people from all over the country to help family caregivers. Well today, after 6 calls and four messages in three weeks I learned that I did not get a place on the committee. 

The truth is I figured there were really only three to four seats on the committee for everyday citizens, the rest would be for organizations and nonprofits that donate money, because let’s face it that’s the way our government and country works. 

When I found out today I asked questions. Not a single question I asked could be answered. The person in charge of this committee (they are on at least the 6th different person) didn’t know any stats on caregiving. The average age of caregivers, percentage of young caregivers, young spouse caregivers … the number of young spouses who die within a year of their spouse dying, the suicide rates of these caregivers – nothing. 

And you know what – he didn’t care. Any question I asked was pushed aside. He did tell me I am able to go to the first meeting they will have in Washington DC, but they don’t know when it will be, where is will be or how I can find out about it. 

I am disappointed. I could have actually helped, I could have made life easier for thousands of people. But is doesn’t matter. I am sad that the people in charge of this don’t care, they think they do, but until you are IN IT you really don’t. You don’t know the dynamics, the struggles or the real needs to this group of people, until you are this group of people. 

So night I am wiping my tears and figuring out the next step … is there a next step? I know I can help people, but how?

Thank you to everyone who wrote letters of recommendation, nominations and showed their support. I love you all. 

– xoxo Victoria