Discovering a Gift I Already Had

I was recently challenged by my friend Diane Tisseur, Groovy Lens Photographic Art (check her out) from Quebec, Canada, to post a Nature Photograph for 7 days, while challenging a new person each day to do the same. I’m so glad she did.

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Photo from Day 1 taken about 3 years ago 

Being asked to do something with my photographs forced me to look at what I had photographed years ago. Seeing these images brought back feelings of joy, peace and satisfaction. It also filled me with a sense of pride to look at some of the beautiful things I created using my camera, my iPhone  but especially, my mind.

Seeing these images transports me back in time, a time I can remember clearly. It’s like listening to your favorite song or smelling a favorite/familiar scent. You go back to that particular time and experience what you were feeling at that time. Being my short-term memory is depleting, utilizing my long-term memory allows to clearly experience the joy and excitement I once had about photography.

It is also forcing me to think outside the box  in an effort to take new photographs. It’s giving me a new sense of purpose, a feeling of excitement. To be honest, it’s giving an escape from thinking only of Alzheimer’s.

So, thank you Diane, for giving me a gift I already had but was hidden in the back of the closet. I’m digging it out and will be putting it to good use.

PEACE,
B

Alzheimer’s Has, at least, Two Faces

Alzheimer’s Has, at least, Two Faces

 

In 1996, Barbra Streisand  directed and starred in the movie, “The Mirror Has Two Faces.”  Streisand plays a homely-looking, Columbia University English Professor with low self esteem issues, who, through a personal ad placed by her sister, meets Jeff Bridges , a Columbia University leading figure in the Math Dept. They agree to marry based upon what they describe as a “palsy-walsy pseudo-marriage.” They see each other, as well as themselves, being not who they really are but seeing themselves only on the surface.

At this point, you may be asking yourself, “What does Alzheimer’s have to do with a Barbra Streisand movie? Well, other than the title of the movie, it has to do with the perception of how we see ourselves and how others see us.  This brought to mind what I wanted to write about. Confused? Great! Welcome to my world.

Maybe this will help:
More than several months ago, at least I think it was, Shannon (my beautiful, understanding, loving wife) and I were returning home after a presentation I gave to a local Rotary Club. I always ask her how things went for I know she will be honest with me. This time, instead of giving me an answer, she started to cry. (I must tell you that due to the fact that Alzheimer’s has already begun its destruction of my short-term memory, I don’t remember many things, however, I do remember this.)
I asked her what was wrong and this is what she told me.

“You stand up there looking all polished and professional, reading from your prepared speech, smiling, cracking jokes, basically being the man I fell in love with, the man I married, the man I  terribly miss.
They, your audience, don’t see who you are when you are away from the spotlight.
They don’t see the confusion, the anger, the anxiousness.
They don’t see the man who can’t remember how to do the simplest of chores.
They don’t see the man who has a reminder on his phone to eat and to take a bath.
They don’t see the man who can’t remember something he was told 5-10 minutes ago.
They don’t see the man who, without a prepared speech or notes can’t speak without stuttering or going blank.
So I’m sad and I’m pissed off that you can show that side of yourself when you are in the public eye but they don’t get to see what Alzheimer’s has done to you . . . what it has done to us.
How do you do that?”

I was speechless. To be honest, I had no answer. I just sat there feeling sad. I knew she wasn’t mad at me, that she was mad at the situation. I feel sad right now writing the words as I recall that event, not sad for myself, but for her. You see, she thought she was getting someone she would get to spend the rest of her life with travelling, laughing, living out all the dreams we shared. Now she sees only glimpses of that man . . . glimpses of me or who I used to be.

The only explanation I could give her was the Public Relations / Marketing / Advertising guy was stored somewhere in my long-term memory bank. When I got in front of an audience, whether it was 1, 10 or 100, something clicked. All of the insecurities and difficulties that Alzheimer’s brought on just went away and the long-term stuff came flooding forward. It only happened when I was Advocating for Alzheimer’s. I had no other way of explaining it.

There’s a part in every speech I give where I say, “This is the best job I have ever had that I don’t get paid for.”

I guess my passion for what I do pushes through the fog and allows me to get my message out. The funny thing is, when Shannon and I first met one another and we just sort of clicked, we said to one another, “Everything Happens for a Reason!” I think there was more to this reasoning thing than we realized.

After she told me how I am perceived in public compared to how I am in reality, it made me realize how difficult it is for people to understand that I, and other people like me, have Alzheimer’s Disease. We probably all have that dual persona, one where the long-term memories kick in and and the other where it turns off. It also makes me realize that more Alzheimer’s Awareness and Education is needed in our society.

The biggest takeaway is understanding what a Care Partner goes through on a day-to-day basis. I (and those of us with Alzheimer’s)  don’t remember how we act, what we say, how we say it, etc., but our Care Partners do and it’s probably the most difficult job imaginable.  It’s why I use the term Care Partner instead of Care Giver. It’s because they are right there along with us, loving and caring for us every step of the way.

I found a quote from “The Mirror Has Two Faces” that I thought to be pertinent.
Rose Morgan: This thing that we call a wedding ceremony is really the final scene of the fairy tale. They never tell you what happens after. They never tell you that Cinderella drove the Prince crazy with her obsessive need to clean the castle, cause she missed her day job, right?

The quote reminds me of my diagnosis and because I’m not able to work any longer, how I probably drive Shannon and the kids crazy with all my bitching and complaining about things that really don’t amount to a hill of beans; how they have to put up with my anxiousness and OCD; how I snap their heads off if I am having a bad day; how I forget things oh so quickly.

I know I’m not easy to live with because of this damn disease, but I’m still me, not all the time, but for now at least some of the time. I know the face I and my family see in the mirror. We don’t like it all the time but it is what it is. I have no choice but to accept it. My family chooses to accept it.
I think it’s why the one thing I DO REMEMBER is how much I love them and how very much they love me. I also appreciate the friends that have not deserted me, with hopes they NEVER go away.

PEACE,
B

 

Thank Goodness My Long Term Memory is Still Intact

Thank Goodness My Long Term Memory is Still Intact

This past weekend, I attended a reunion of sorts. We celebrated 75 years of educational achievements St. Agnes Parochial School accomplished. Thousands of boys and girls passed through the doors of St.Agnes, boys in their tan khaki shirts and pants, girls in white blouses and navy blue skirts. (the uniform code was changed later on, but that was long after I left) Unfortunately, due to low enrollment over the past several years, the decision was made to close the school.
Like anything else that happens in New Orleans, whether good, bad, happy or sad . . . IT WAS PARTY TIME! Thus, The Final Bell Has Rung Celebration was created. I’ll get to the celebration in just a bit.

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I must admit, when I first read about the closing of the school, it saddened me. So many memories came rushing into my head; teachers, classmates, activities, school plays, field trips, etc. I had my own personal movie playing in my head. I also visualized the layout of the school. (Spending 8 years in the same building, you get to know your way around) I could see the cafeteria and remember the smells of the lunches Mrs. Jeansonne prepared for us each day. I think we were all too young to appreciate how good her food was. How I would love to taste her chicken and rice again.
(Friday nights, all 3 of my brothers, at one time or another, as well as myself, attended Boy Scout meetings in the cafeteria. Although smaller in numbers, Troop 36 is still in existence today.)

It amazed me how much I remembered and how clearly the memories were. Most of the time, I have trouble recalling 11219047_10205504736072068_5639772073333305210_nevents from the day before or even 5 minutes ago, however, Alzheimer’s, if there is such a good thing about this damned disease, still allows me to recall memories of long ago.

One of my fondest memories was due to the huge enrollment in the 60’s (we were the Baby Boom Generation). The school ran out of classrooms. So, my 1st Grade class (1966) was in an old house behind the school. The next year the portable buildings were completed and they housed Grades 1-4. The main building was for the upper grades.

Moving into the main building for the 5th grade took a little getting used to. The hallways of the second and third floors always seemed so dark, long and daunting. I guess anything would look like that at such an early age. Now, still a bit dark, everything looks so small.

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Flash forward to the present and the “not-so-clear-memories.”  If not for the photos that my wife took, as well as others, at The Final Bell Has Rung Celebration, I would not have remembered who I ran into. Those who I did manage to see, although I hadn’t seen some of them in 45 years, I still recognized them. They still had the same faces, just a little bit older, sometimes grayer (like me), but I knew exactly who they were.

Some of them knew I had Alzheimer’s and were amazed how well I looked and that I remembered them. I’m not sure what they expected, but it goes along with the stigma of having Alzheimer’s. You’re supposed to be elderly and sickly looking. Don’t get me wrong, I’m not complaining or insulting anyone. I’m probably the first young(ish) person they have seen with Alzheimer’s. I totally understand and appreciate every one of them. I also ignore the stigma. Like Popeye says, “I yam what I yam!” and as I always say, “I’m Still Me!”

My wife, Shannon, stated in one of the pics she took, “Brian having a great time at the St. Agnes reception. He has seen and talked to so many old friends….he is so happy and in his element….this is ‘my Brian'”

It made me realize that she saw me as I “used to be” and it made me happy that she could see that. On the other hand, it saddens me that I am not that person all the time anymore. I want to be, and sometimes I am, but I want to be that person all the time, if not for any other reason than for her. She married a man who was funny, lively and outgoing and I still am at times, but I’m not as spontaneous as I used to be. It makes me extremely anxious and that pisses me off.

Anyways . . . as I said before, if it weren’t for the pics, I would have a hard time remembering a lot of what happened and 10416617_10205504735472053_8447422720410854227_nwho I ran into. I can be reminded of something if someone prompts me or brings up a certain situation but unfortunately, I’m not able to remember those things on my own.

As long as my long term memory stays intact, I can recall many memories, have many movies play in my head and still recall those dear friends from 40+ years ago. I just can’t remember the present too well. And that my friends is the beginning of a long, horrible road that I know I will travel, but I will travel that road with all my memories of yesteryear and those memories will include those of you whom I have had the pleasure of making your acquaintance.

Until next time,

PEACE
B