Remembering Cousin Jay

Jay Mathews

Jay Mathews

My dear cousin, Jay Mathews, passed away Sunday morning after a tortuous 3 year battle with cancer.

I – and his family & friends – are devastated. He gave without asking, told the same corny jokes as my Dad, and was enthusiastic about life. He grew up on the AuSable River, as all my cousins did. He was a hunter, a fisherman, He worked in every kinds of profession you could think of: lumberjack with Uncle Claude, septic (Honey Wagon), carpentry, Weyerhauser (which left his lungs a bit messed), tree trimming – a jack of all trades, and master of many things.

And since I have come back to Michigan and have my diagnosis he’s been a Knight in Shining Armor, calling me with the family gossip, dropping by. He was going to take me on a riverboat ride to revisit the places we grew up with: Oxbow, Camp Gingerquill, Canoe Inn (now Gates), it was to be glorious.

When I was hit with the Christmas ice & snow storms, he came to help not only me, but my neighbors dig. What he didn’t say is he’d just finished another round of chemo and radiation, and had a knee replacement. Looking back, as he broke thru the ice encrusted snowbanks, I can’t imagine the extreme pain he was in. But he said nothing.

And so, I guess I should not be surprised that he told his family to not let me know that he was dying, losing the fight. When we spoke not so long ago, I asked how he was doing, and he said, “Great news! No more chemo!” and I wondered about that statement as I had heard that from my Mom’s drs. But he assured me all was good, going on about how his baby grandsons were going to be moving in across the street from him.

We griped about Medicare & Social Security, we talked about retirement vs disability. Investments, stuff.

We talked about the loss of Bonnie Fieren’s husband, he assuring me even tho I couldn’t go to his funeral we were going to all get together for a summer picnic. The whole of the Wells’ Cuz clan.

I will miss you, Jay Jay. You left us too soon. I was too slow to gather us all together one last time. But I am grateful for these last 5 years, getting reacquainted. I love you, Cuz. I’ll see you a bit later.

Vicki – feeling sad.

Permanent link to this article: https://vickisvoice.tv/2014/06/remembering-cousin-jay/

Today is a bad day. Tomorrow will be good

I will never understand how the brain works. Or, in my case doesn’t.

I still have the intelligence to know how things should be. But I have no control over how to perform the actions to make life normal..

Yesterday was a ‘good day’.

What does that mean to someone with FTD? I had no dystonic seizures (uncontrollable movements, grimacing). It was a rainy day. That meant I slept well and later, had a good nap with no dreams.

A good day begins with “Good morning Papa, Beanni” and ends with a thank you at night.

A good day means I can make something to eat that takes more than 2 minutes. With the help of Uncle Ben’s microwavable rice, a friend who brought me asparagus and Schwan’s Italian beef, I made a dinner.

A good day means, when I check my texts they are all current, and family and friends haven’t been waiting for days for a response.

A good day is laughing, venturing onto my porch, picking up my dirty dishes or laundry. That’s a good day.

Today isn’t. But with the grace of God, tomorrow will be. A good day.

Permanent link to this article: https://vickisvoice.tv/2014/06/today-is-a-bad-day-tomorrow-will-be-good/

Late Night and Parish Life

It’s 1:39a. I’m playing games on both my PC and my iPad.

Tomorrow I am hoping (praying) that I can attend our parish healing Mass.

I can’t sleep. I’ve had 3 sessions of dystonia (seizure-like, muscle spasms), and everything points to my past of being unable to go outside my home.

So, I take the drugs and play games wondering if I should just stay up all night or try to get some sleep.

It’s been 4 years since I’ve walked into my parish. They serve me regardless of whether I cross their threshold, nor afford to tithe. Which boggles my mind.

They bring me communion (Eucharist) when I allow it. Socially I am shriveling up. I have a hard time letting people in. A harder time leaving my home. My fortress.

I’ve asked my daughter, Beth, to take me. I’ve invited a dear friend to come with. My Eucharistic Ministers will be there.

I need the fragrance of incense and bees wax. I need the balm of sunlight through the stained glass windows. I need to light a candle for those I love. I need to touch a pew. I need the healing oil Fr. Bob will anoint me with on forehead and palms. I need the forgiveness.

Most of all, I need the hope that a healing Mass provides. To heal, to maintain or to have a happy death with my family around me.

Papa, I’m trying with all my strength to be present tomorrow.

It’s me. Vicki

Permanent link to this article: https://vickisvoice.tv/2014/04/late-night-and-parish-life/

Do Not Ask Me To Remember

When we saw it, Vicki and I each wanted to share this message with you. It captures this time in Vicki’s life so clearly.

Do not ask me to remember

Permanent link to this article: https://vickisvoice.tv/2014/03/ask-remember/

Sims, Design, and FTD

I am a diehard The Sims FreePlay gamer. I work hard on it every day because (1) I enjoy it, and (2) It forces me to think sequentially, which is the hardest part of my disease (Frontotemporal Dementia – FTD). And I am proud of the work I have done.

I’ve begun posting photos of my life in SFP on Facebook. I apologize if I am adding to the FB clutter.

But, I am proud of the work I am doing, even if it’s age 16 appropriate. And so I will continue to share the designs & architecture I’ve accomplished.

I don’t know how to spare you from these posts anymore. Thank you all for the positive feedback, Jim Coyle and Marcia Sorenson Sullivan.

It’s hard, some days, being my new Vicki. Thank you for understanding.

Here are a few of my SFP photos:

Thanksgiving

After Thanksgiving dinner. A US pastime.

Final Rehearsal

Final Rehearsal before Christmas!

Christmas House 3013

Christmas House 2013!

New Years Eve at the Haunted Mansion

New Years Eve at the Haunted Mansion

Finally!!

Finally!!

Permanent link to this article: https://vickisvoice.tv/2014/01/sims-design-ftd/