Anyone on a board hosting a convention knows they will muck something up at some time. But not ME!! I was on the board, helping to bring break food in, since they hadn’t a large allowance. The meetings were to begin one day earlier … But I got totally lost at the airport. Was there 8 hours looking for where I was supposed to be, finally rebooked. I fibbed that my flight was canceled. It was the 4th time this had happened. So frustrating. How could this happen to ME??!!

And when I finally arrived, a board member said in front of my boss, “Well, Vicki, if you are sincere about being president you should probably have been here.” My boss looked at me. And before I could say anything, the other party said “And lying about a canceled flight won’t help.” And then I wanted to crawl in a hole as my boss, stunned, looked at me for a long time.

I was up for election as president of Catholic Academy, something I had dreamed of for 8 years. But why stop there?? I had a booth I needed to be at when I wasn’t in a meeting. Not a problem, juggled multi-tasking all my life.

Then my good friend came by – as the aisles and booths were filled to overflowing – and said “Vicki, will you do the invocation for today’s luncheon?” “Not a problem, if you have it written out,” I responded. She flung over her shoulder, “I don’t have anything. You can wing it!”

Omg. I could not wing it. My brain just closed down. I had 5 minutes to prepare. Our booth was, luckily, on the route to the Ladies Room. Not a lot of eye contact, but the traffic was good. For 3 days I’d escorted ladies – with no obligation to my product – into the Ladies Room and showed them the quiet back exit.

Something happened when I was told to extemporaneously do the ‘invocation’. My favorite author, Mary Higgins Clark was there to honor those attending. But she couldn’t make it, but her lovely daughter took her place. We were honoring Cardinal Foley and the best Editor/Writer, Fr. Jeremy, from St. Anthony Messenger Press. A BIG luncheon, to say the least. The MC and his counterpart had rehearsed. When I heard there was no script for me, I just shut down.

Since my booth was the entrance to the ladies room, I ran to my comfort zone for 5 minutes. However, as I rested on the red lounge, 3 men suggested I might like the Ladies Room better. ???? I looked around and sure enough, men were at urinals and I had fled to the wrong restroom.

I fled, with one note scrawled large “God, help me!!”

Friends said I was funny, but I don’t remember. All I remember was an out of body experience, looking down at someone I loved, floundering, grasping for any words to fill the silence. I remember thanking the men in the men’s room … and near the end, promoting Mary Higgins Clark to a saint.

To this day I am very vulnerable about what people say I said to Cardinal Foley, Fr. Jeremy OFM, and everyone assembled there. I have no recollection of what happened. But after this embarrassing 15 (!!) minutes of infamy, I can recite what everyone said: “Say Amen, Vicki, next time just say Amen.”

That was the first time (after getting lost for a full day in the airport) and blabbing about why I should be Catholic Academy’s president, that I knew something was wrong.

I had never heard of FTD/Picks as an early onset dementia (I was in my 50s) with the shortest lifespan, no medication, no cure, the fastest killer of adults between 20 – 50. I only knew I was ashamed of what I presented to Catholic Academy and as the awful world’s longest invocation …

Humility has become my angel’s wings, wrapping herself around me. I have days I cannot speak at all (where was FTD/Picks when I needed it???!!). But most days I can write. And my long term memory brings out times of crushing embarrassment.

I had such simple, humble plans for CA … but now I have the same ideas about how long I will live and make sense when I write for others who have lost their voice and their words.

I pray that the Catholic Media Conference bears great fruit. How I would love to join you, but likely, I would probably forget the words, or the voice to speak with you, were I there amongst you.

Love to you all. Don’t stop being open to new ideas. The worst you can do is have dementia …

xo Vicki

Picture us, in our bunny suits, on the Commons, with a special invitation by the mayor to kick off the Easter Egg Hunt.

Picture “- – -” symbolizing our routes, like in “Family Circus” by Bill Keane.

Picture us: End of day lining up for the judges, showing what we had collected.

The picture: lines of FTD bunnies, opening their baskets to claim their prizes, with a background of hundreds of un-collected eggs in plain sight.

The first FTD bunny proudly opens their basket: 3 sets of car keys, 1 egg – half eaten, cigarette butts, flowers, 5 business cards, a purse, and someone’s leftover McDonald’s Egg McMuffin. The judge looks to his panel and says, “In hindsight, inviting those with FTD to oversee the Easter Egg Hunt may have been an error.”

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Laughter is the best medicine, always. When we go into our chats each week FTDSupportForum. Free to speak about anything, right up to our dying, or loss of bowel or bladder control. With our ‘FTD family’ we can reveal everything without being judged, or taken from our homes by well meaning people who care for us. We console, encourage and accept one another just as we are that day.

I have to emphasize that day. FTD is a ‘hit and run’ condition. One day you can’t walk correctly, the next you can walk, but can’t speak; or you cook for your family one day then not eat at all for days. There are no peaks or valleys. There is our distinct ‘manic’ and normal is a flat line, we cry over an ant we stepped on, then turn on our family and lash out.

There is no set blueprint for this nasty thing. So every day, 24/7, we are on alert for who we will be in the next moment. Planning ahead for something might include: Depends, many Rx’s, many sets of pants, notebooks, Kleenex. Walkers or canes? Wheelchair or Little Rascal? Pay bills or go bankrupt? Sleep or insomnia? Recognizing you or asking for the 100th time: “Hi, I’m Vicki. Do I know you?”

Easter is the perfect season for us. Death and resurrection, followed by a new life. Only our Lent and Easter season plays 365/24/7. So in my heart of hearts I know we will be in heaven … but we’d like someone else to drive. Oh look! I found an easter egg or something (rolling it around in my hand, looking dubiously.)

Love, Vicki

This came through our guestbook by our friend, Colette.

I think it is hugely important to note. Patient Advocates: BE LOUD about knowing all the risks of major surgeries. I can relate with her information. I believe my condition moved to the forefront because of the anasthesia and recovery.

“Comment:
I have FTD. I was diagnosed at 52 and will be turning 55 this July. My experience that cost us everything (bankruptcy) was that they had to keep hospitalizing me and surgeries and they kept giving me general anesthetic which is contra-indicated with dementia. i’d end up in a psych ward for weeks. all the insurance money went by fast. when i finally demanded a awake procedure; i did not end up at psych ward but i do have to take a lot of meds to keep me from going manic. i type and speak (obviusly); but my ability to spell well and be proper in grammer has gone down. my concern with what will people think has gone way down.

love;
colette”

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Please join us in our conversations each Tues and Friday at 2:00 Central. You can find us at FTDSupportForum

Also, visit FTDTheOtherDementia. Our friend, Susan, has produced a documentary on exposing this secret killer of people as young as their 30s and into their 60s. This is not about Alzheimers, but something unknown, striking people in their prime. No cure, no treatment, no funding, no studies. You can also donate to the project there. Please help.

Love, Vicki

Hailed as King, ridiculed as King, dying as a man, rising as our God, with the Father and the Holy Spirit

She was born the oldest of 3 children in a Catholic Italian family. She was loved in all the traditional ways, rich in the family’s traditions: festivals, family gatherings, playmates at school, parish involvement. She loved art, animals, music like all teenagers, but there was a shyness about her. During high school she became determined to be on the outside what everyone saw on the inside. She lost weight and bloomed in her senior year. As I thumbed through the newspaper, I identified with her struggle with weight, and self image so intertwined with that, to perfection. It was good to leave that cocoon behind, I thought.

Reading on, I was surprised to find that at 26 she had suffered hypoxic encephalopathy – a neurological injury caused by lack of oxygen to the brain, at first put on a ventilator, but soon able to breathe on her own, left with a simple feeding tube. They never would find out the cause. I became more engrossed in the story. It had been five years since that episode and there was no sign of improvement or having her come back to the life she knew. It had moved into the courts, two opposing sides, each maintaining her best interests. She was labeled as being in a constant vegetative state.

Years before, I had a son who was born with extreme hydrocephalus. The standard (Apgar) test for reflexes, swallowing, sight, alertness given to all infants was on a scale of 1 – 10, at birth, and repeated shortly afterwords. He had scored a zero, twice. He was on life support a short time, specialists flown in from around the country. When I awoke, I knew it was very bad. There assembled around my bed were my parents, husband, pastor, doctors, a social worker. There was no sound from the nursery. My son’s life was placed in our hands, to decide whether to keep him on life support, or be merciful, and turn them off. There was nothing in his brain that survived, except his brain stem. He couldn’t breathe, eat, was blind. His head was twice the size of a normal infant. He would not survive surgery. There was little hope that he could live a week.

He was received into the Church, and he was removed from all life support. And… he began to breathe on his own. We authorized a feeding tube, leaving the rest to God. He required constant hospitalization. One week stretched into a month, the months into years. He passed, naturally, 2 months shy of his 6th birthday. It was 1981.

It was now in the early ’90’s, and I am reading of this poor young woman, empathizing with her and a drama that is unfolding in the national headlines.

But life goes on, and I lost the thread to her life, with my everyday-ness. I accept a job in St. Petersburg late 1994, as a communications director for the Catholic Diocese. Moving from Michigan, a whirlwind of activities met me on the first day and only grew. One day at lunch a name is mentioned. Terri Schiavo. I was startled. I thought she had passed away. But no. She lived not far from my office. A court fight is about to take place to remove her feeding tube. This was to be the last attempt, after several other removals and re-insertions.

Terri Schinder Schiavo, b. December 3, 1963; collapse: 1990, d. March 31, 2005. May you rest in peace.

Going through the files, the court documents & church statements, I stumble upon the photo I saw in the news of a beautiful, laughing young woman, filled with life. And I look at the tapes submitted to the courts. Life had first smudged, then began erasing her unique features, as it had my son’s, and as it would with me. Her body was contorted by constricting muscles, dying nerves. Her peaches & cream complexion was now pocked by acne born of normal irritation. This beautiful young woman may have aged from 26 to 41 chronologically, but she looked ancient. “Terri,” I prayed, “if you are going to wake up, do it now.”

I lived and breathed her last days on earth. There was not a paper, tabloid, news vehicle or magazine that did not grace Terri on the covers of this event. No dignity. No privacy. Voices were conspicuously loud or silent. There was no middle ground. Protesters disrupted the quiet of the hospice where she was being cared for. Pseudo-friars ran the circus as much as the jugglers for life. I would drive by every chance I could. I took death threats for both sides, thousands of emails and voice mails overflowed the phone lines. And in small pockets, away from the cameras’ prying eyes, were small groups of our parishioners, members of religious and priests, compassionate visitors praying the rosary. Holding no signs, but maintaining a vigil. For some it was a daily pilgrimage for years.

I did what I could, but it wasn’t enough to give her dignity, to find a voice just for her, the silent woman, with the huge dark eyes. It was – without a doubt – the darkest time for me professionally, and as a mother and woman who identified with her in so many ways.

The drama played out for 14 days, slowly, painfully. People began fasts with her. It moved into Palm Sunday, and I felt like I was following the path with Christ, with Terri and with her family.

Five years ago today, Terri Schindler Schiavo breathed her last breath. Courts had denied both husband and her family mutual visitation during her death watch, even in her death. The circus would continue, but she was now safe. She was beautiful. She was whole. She had not gone to a better place, but I believe, the best place. No longer caught between life and death, court nor church, but free.

I didn’t know it, but I had already begun my own journey into dementia. And I have chosen to speak for myself, and on behalf of those who cannot. I don’t know how long I will be able to physically speak, but God has allowed me to write, but if I can provide dignity for those who cannot, then it’s a step I wish I could have made for her, and the thousands who face those decisions every day. I will only have good photos, good memories when people remember me. And, when it’s time, I will be clothed in God’s love, standing by the family I love, with Terri and my son.

To the family of Terri Schindler Schiavo:

You remain in my prayers. You keep her alive, you remind us how fleeting life can be, and to love and speak to one another about all things. May you find solace in the love that still connects you to your daughter, your sister.

One thing I learned was to have an Advance Directive (living will) prepared, another way to speak for myself. I have durable power of attorneys, I even have the grace of planning for my funeral. I have a will. I have good people to take over, when I no longer can. And I have the privilege of watching, mere days after Terri passed, the last days of Pope John Paul II, who taught us all how to live and how to die.

I want to thank the Florida Catholic Conference for the amazing work they did, storming the legislature, day and night, for keeping me on top of everything. Of all the unsung heroes in our US Catholic Conference who work for the marginalized, the wounded, poor, the elderly, immigrants and more. Your pioneering efforts, assisting our bishops in challenging issues, are the voice of the silenced.

House Health Care Regulation Committee Amends Nutrition & Hydration Bill:

Legislative Updates:

House Health Care Regulation Committee Amends Nutrition &  Hydration Bill (Florida, 2005)

Advanced Directive Forms by State:

http://www.caringinfo.org/stateaddownload

Show your love for yourself and your loved ones, so that no more people have to endure what Terri did.

With love and blessings, Vicki

The Venerable Pope John Paul II, b: May 18, 1920; d: April 2, 2005. May you rest in peace, and be waiting to meet me in the next life ... Thank you.

From the death of winter, we find life in spring. At the end of the storm, we seek a rainbow. Papa, are you listening? It's me, Vicki