Thanksgiving 1950

Thanksgiving 1950 – forever.

What child has not had a phone shoved into their face, with a mom saying “look who wants to speak with you??”. You roll your eyeballs at your mother, and, upon accepting the phone – MOST reluctantly – you are immediately connected to a relative, male or female, that is most likely homebound, or unable to attend the event.

My mom believed that my voice would make their day, in lieu of a table laden with turkey, dressings, mashed potatoes, and pumpkin & pecan pies. My childlike voice would convey the great day we were having apart from them, somehow make them cheerful, in their nursing home or living room. And anyway, if we didn’t convey that, mom was back to forking the potatoes, refilling the bugles and onion dip.

I did it to my kids. I ran out of things to say and would push the phone into their face, whispering ‘tell them you love and miss them’.

Never knowing how it felt to be alone on a special day. Eating meals on wheels, or a TV dinner. Or to be in a place so far from home, no one could understand. A nursing home, smelling like urine, TV blasting, and hearing the moans of those who don’t know where they are, calling out, to God, to anyone to bring them closer to home…

I hated prepping the plates, and taking them to our family that couldn’t attend, or I thought wouldn’t, come to dinner. When I had my own children, I would bundle them up and make them come with me. I didn’t feel wonderful, I felt irritated. Couldn’t my parents handle this better?

And now I am those relatives. It’s only fair I should endure what I had passed on. I am delighted with a text, an email… there are no phone calls in this generation, and no one shows up with a plate of food with little grandchildren around them. I sound cognizant. Therefore, I should be able to call or text myself. When they invite me I cannot come, I am overwhelmed with leaving my home.

So how could they know when I have a fear-free day, and want to be with them? I’ve turned down all their invitations. But do they know how afraid I am to leave the safety of my home? There are no words that I can use to tell them I am not the mother, aunt, cousin that I was. My world is narrow. My cousin, Jay, blew thru all of that. He knew when to call, when to text. When to stop by. And when to ignore all of the above. But Jay’s gone now.

I fear, Papa, that I have become a liability to my family. One daughter ignores, just as Jay did, whatever I say and stays part of my life. But the others, away from me, get irritated. Disgusted with my stupid repeated requests for contact. Yes, they will buy my groceries, but our visitation is 20 minutes or less. I hunger, not for turkey dinners or hot dogs on the 4th, but for them. To see them, take in what is going on in their lives.

Papa, I was so wrong in my youth to take the telephone, or accompany my Mom on holiday dinner runs. Or newspaper exchanges. Or make short trivial trips to the grocery store for them. I didn’t see that my mother was saying “I love you” with every action. “I love you” with every non-gripe. I’m late in the learning.

Papa, I wish I had learned the lessons you so afforded me. Instead, I passed along being disgruntled, burdened, bothered by family that needed so much more than a phone call or a plate of vittles.

I reap what I sowed, and yet even with that, my family surprises me. Because, despite all my best efforts, they love me.

As do you, Papa.

It’s me, Vicki

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Surprise Fourth Of July

The day dawned, so beautiful it almost choked me up looking out the window as the sun rose. A perfect day from Papa. I just lay there, the breeze shuffling the sheets, the birds singing. A perfect day…

I’d checked with my kids to see if anything was on the docket for the 4th. I remember the old days when we would gather at Beth’s cottage on a tiny lake, not much more than a large pond. We’d have a bonfire, the kids swam in the lake, we played Euchre or double Solitaire up in the cottage. We’d have burgers & dogs, and later hobo pies over the fire.

Someone always had a stash of Indiana fireworks. Dusk came, and we’d settle in for our own celebration. Then kids tucked into the loft, we’d say Good Night to the 4th of July.

So, for the first time in a long time, I was ready to be with my family. No Bertha Lake exists for us any more, but my kids have a boat in Grand Haven. I wanted more than anything to be there with them.

But they all said they had plans. I hinted that the sister who lived near me and I would love to come over. They said they had friends they were hanging with.

Disappointed, I texted my daughter, who said she was on her way to her sister and brother’s. Just after that they sent photos of themselves on the boat in the beautiful harbor of Lake Michigan.

In that moment it was like lightning struck & split me in two! A rage began in my gut, and spread throughout my body. An anger so hot it scared me. And I was over my head in sadness. and I needed to close FB and get away.

The day continued, bathed in rage, throwing things, cursing, weeping, screaming. It was like someone else was driving me. And then the dystonia started just as fiercely. I almost pressed my emergency button twice. Eventually, exhausted, I fell asleep.

I want to tell my family I’m sorry, but a part of me cannot yet. The embers of my anger are still easy to flare up.

I hope they know it’s not me. It’s the evil on my rotting brain.

4th of July

I know they have a right to a life without me. Each does the best they can given their lives. But I’m not ready to be without Vicki. I miss her, too.

So, Happy 4th of July weekend. I celebrate, by accident of birth, that I landed in the best country on the face of the earth. I am ashamed of my reactions, but there was/is nothing I can do when the other side of Vicki takes over.

Blessings. Papa, it’s me, Vicki

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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.

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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.

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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

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