WHY ME???

WHY ME???

When I started writing this blog post, I had a different topic in mind.
That topic was lost when I forgot the password for signing into this site. I then began the task of resetting the password but didn’t write it down each time I changed it. (yeah, I was under the assumption that I could “remember it.”) After the 4th ATTEMPT, I wrote it down and another topic, or rather a question, popped into my mind . . . WHY ME???

I think I’ve asked that question to myself, probably over a thousand times during my almost 57 years on this planet, but each time, I came up with a logical answer . . . 

For instance, “Why did I get punished” was a question I asked myself regularly during my childhood. My most common answers were . . .

“Talking during class time/church or any other place where I was NOT SUPPOSED to talk.”

“Arguing with my teacher/classmate or anyone else I disagreed with during a time when I was supposed to be quiet.”

“Not telling the truth” (I’m still not sure how I always got caught)

“And then the time I got punished for telling the truth and was not believed, so I lied and then got punished for lying.”

You see, my sister, my brothers and my childhood were nothing like the Brady Bunch. Instead of our Dad sitting us down and having a “teaching lesson-like conversation”, let’s just say we had a bit of an issue “sitting down” after our “conversation.” I think you get the picture.

As the years went by, I still questioned WHY anytime something didn’t make sense to me. I usually wouldn’t let go until either I was satisfied with the answer or the person to whom I was asking just gave up answering my questions and moved on.

So, yes, I was very inquisitive because I wanted to learn. I knew that everything happened for a reason and I wanted to know what that reason was.  I would say I had about a 75% success rate in receiving answers. To this day, I’m not sure “some” of the answers I received were “correct” or just “made up” to shut me up, but I at least got an answer.

Then, in 1998, my world changed. My niece, Mary, died from Cystic Fibrosis at the age of 22. I knew how she died for I was there by her side watching her, crying for her, singing to her, as she drew her last breath. My question was, “WHY HER?” I’m not saying I was wishing it upon someone else, I was just questioning, “WHY?”

She struggled all her life. My sister was told Mary wouldn’t live past the age of 2. What her doctors and everyone else who cared for Mary came to know was how much of a fighter she was and how she didn’t like being told what she could or could not do.
She went through, not 1 but, 2 double lung transplants. She fought during all 22 years of her life.  

Mary passed away in October of 1998. One of her last wishes was to take a trip wherever she wanted to go. My sister told me, she chose to come to Pensacola to surprise me for my birthday, which is in September. It was a huge surprise.

I will never forget the last week of her life. She was talking to me from her hospital bed and she asked me, “When are you coming to see me?” I told her I would be coming that next weekend. She said, “NO! YOU NEED TO COME NOW!” I asked her what was wrong and she said, “everybody here is acting all nice and pleasant. When I yell at someone, I want that someone to treat me normal and yell back at me and tell me to shut-up. You’re that person!” I arrived in New Orleans the next day.

I stayed up at the hospital with her, only going to my parents’ house to bathe and eat. On her “last night” one of Mary’s friends and I were with her and we were watching the World Series.  Mary was on oxygen and her tube would sometimes fill with condensation and have to be emptied. If not, she would have more trouble breathing than what she already had. When this would happen, she would alert us and we would drain her oxygen tube.

During a crucial part of the game, Mary was trying to get my attention to drain her oxygen tube. Keeping in mind what she asked of me on the telephone, and in keeping with the sarcastic nature of our relationship, I told her to “keep it down, we’re trying to watch the game.” She started laughing, which made her start coughing, then we were all laughing. All of a sudden, she stopped coughing raised up her oxygen mask, held up a single finger (you know which one) and said some pretty obscene words, put her mask back on and continued coughing! That was my Mary.

We stayed awake most of that night, talking, laughing, telling stories. A little after 1:00 pm the next day, well, you know what happened. Although I was terribly sad, I wouldn’t have traded those last days for anything in the world.

Yesterday, July 29, 2017 would’ve been Mary 41st birthday. I couldn’t help but wonder what a firecracker of a person she would be today.

The answer to the question, “WHY HER?” came to me this morning.
She was chosen to show us, even when in the darkest of times, even during her hardest struggles, all she wanted was to be treated normally. Being she could still laugh through it all was also a valuable lesson. 

The same question arose again in the very late ’90’s when my Mother was diagnosed with Alzheimer’s Disease. I thought it was hard to take Mary’s Diagnosis. Nothing in this world could’ve prepared me for this. 

My question, again, was, “WHY HER?”

Here was a woman who was the closest thing to Snow White I could imagine. People even mentioned that she even sounded like Snow White when she sang.
She was a kind, loving woman who helped take care of Mary (who I just wrote about), her Father (who also had Alzheimer’s), her Mother (who was a paraplegic), her sister (who had brain cancer), my Dad (who, for those of you that knew him, was more than a handful), other friends and relatives, and not to mention 5 children who she had during the first 10 years of 60 years of marriage.

She did everything. She was June Cleaver and Carol Brady all rolled into one. She was an amazing Mother, loving and patient wife, dependable friend, phenomenal Southern cook, extraordinary singer and possessed so many other superb qualities.

Through her Alzheimer’s Journey, she almost never stopped smiling. Even when she could no longer speak, she would hum or “la-la-la” the words to a song to try and communicate. I think she did it with me to signify our bond for loving music. She was always trying to help and to not be a burden on anyone. If she had the ability to speak she would’ve apologized to everyone for needing assistance and care. That’s who she was.

She passed away in January 2015, only 2 1/2 Months after I was diagnosed with Alzheimer’s. It was an extremely hard time, to say the least, and brought up the question again . . . WHY HER?

Like Mary, that answer came to me through my Mother. She taught me how to live life trying not to burden those whom she loved the most while still staying true to herself through her love of music, her patience and her love of family and friends.

So . . . in looking at the lives of both Mary and my Mother, both of these wonderful, strong, beautiful women who lived their lives in the best way possible, have helped me in answering my, “WHY ME?” question. 

I truly believe Mary and my Mother used their strengths throughout their entire lives and really depended upon those strengths during the last days of their lives. It started me thinking about the strengths that I have that would/has already enabled me, so far, to get me through my Alzheimer’s Journey. I had to look back to one of the main reasons why I got into so much trouble during my early years . . . “TALKING!!!”

Talking is what I have done, and still do, to this day. (just ask my family and friends . . . lol) By using my voice, I’ve been able to speak to thousands of people, telling my story, dispelling the Stigma associated with Dementia-Related Illnesses, laughing at myself as I go deeper into the Alzheimer’s Forest, using my singing talents to bring back memories to others of days gone by.

So, looking at the lives of 2 incredible women, “Mary Estelle Tycer and Norma Mae LeBlanc,” who used their strengths to, unknowingly, teach us how to live our own lives by using our own inner strengths, I’ve finally been able to answer the question of “WHY ME?” 

Thank you, Mary and Mom . . . still teaching me after all these years.
I LOVE and MISS YOU BOTH!

Until Next Time . . .
PEACE!

B

Question Mark On Scattered Papers
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I Miss Reading . . . and A LOT of other things!

A friend of mine recently asked me if I had ever read the book, “tuesdays with Morrie” by Mitch Albom. She said, “he allows himself 10 minutes a day to mourn the passing of the old him.  After that, he lives in the moment for the day.”

I thought about this and although I do “live in the moment”, I don’t take the 10 minutes a day to mourn the passing of the old me. To be honest, I probably take a little too much time to mourn. 

“Don’t cling to things because everything is impermanent.” 
 Mitch Albom, Tuesdays with Morrie

51AhqmiD-oL._SX344_BO1,204,203,200_For instance, I thought to myself, “I would love to read this book, but I wouldn’t be able to remember what I’ve read.” Don’t get me wrong, I “CAN” still read, I just don’t retain anything I have read. Then I started thinking of all the books I’ve read over the years and how much I enjoyed reading. Then I got sad. Instead of taking 10 minutes to mourn, I took a little more . . . OK, A LOT MORE!!!
I not only mourned not being able to retain what I’ve read, I mourned not being able to work anymore. Working not only gave me a purpose but it also provided me with an income, an income that helped me provide for my family. Now, through Social Security Disability Insurance, I receive approximately 3% of the salary I used to receive. I’m thankful for receiving that but sometimes, I only look at the glass half-full.

“I give myself a good cry if I need it, but then I concentrate on all good things still in my life.” 
 Mitch Albom, Tuesdays with Morrie

I also mourn the loss of my driving privileges. Due to my brain hemorrhage that was discovered back in February of this year, as well as the temporary loss of my ability to speak, my Doctor strongly urged that I discontinue driving. I knew what “strongly urged” meant and I knew that would be the last day I would ever drive. I mourned a lot over that . . . and still do, however, it wouldn’t compare to the amount of time I would mourn if I hurt someone in my vehicle or in another vehicle.

“This is part of what a family is about, not just love. It’s knowing that your family will be there watching out for you. Nothing else will give you that. Not money. Not fame. Not work.” 
 Mitch Albom, Tuesdays with Morrie

I mourn the loss of friends. When I told Shannon that I wanted to “talk about my Alzheimer’s” she turned to me and said, “just remember, once you put it out there, you can’t take it back.” She was right!
My thought was, talking is my strong suit. By talking about it, it would hopefully help others have a better understanding of Alzheimer’s Disease and how individuals like me can still live a pretty good life. Also, by talking about it would keep me engaged, keep my brain working.
What I didn’t know was how many people would stop speaking to/with me because they didn’t think I would be able to carry on a conversation with them. Also, as I wrote about in a previous blog post, there are those who feel I’ve been faking this whole thing.
I wish I didn’t mourn that as much as I do.
However, looking now at the glass half-full, I have met some pretty phenomenal people in the Dementia World. These individuals are some of the bravest, funniest, most intelligent people I have come to know.
I have also discovered my true mission in life and that is being an International Dementia Advocate. It gives me purpose, drive and passion to a level I have never experienced. 

“Devote yourself to loving others, devote yourself to your community around you, and devote yourself to creating something that gives you purpose and meaning.” 
 Mitch Albom, Tuesdays with Morrie

I mourn a lot of other things, too many to go into here, however, I’ve realized by writing this blog post, and although I didn’t read “tuesdays with Morrie” I read some of the quotes from the book (some of which I’ve listed here) and I made myself a note and stuck it on my desk so I will see it every day. I may have to put one on the bathroom mirror, one by my recliner, make it my opening screen on my phone . . . 

  10 min

Whatever it takes to remind me to keep the mourning at a minimum.

“Life is a series of pulls back and forth. You want to do one thing, but you are bound to do something else. Something hurts you, yet you know it shouldn’t. You take certain things for granted, even when you know you should never take anything for granted.” 
―  Mitch Albom, Tuesdays with Morrie

I’ve never tried to paint a rosy picture of what it’s like to live with Alzheimer’s. I wouldn’t be honest with myself or with you if I did that. Just know, I don’t do it for sympathy. I don’t want nor need anyone’s sympathy. All I want to do is to live the best life I can possibly live in the remaining years that I have, which I hope will be many.
Until then, I’m going to continue my Advocacy Journey, doing the best I can to share awareness and education as it relates to everything Alzheimer’s and other Dementia-Related Illnesses.

Oh yeah, and remember to mourn no more than 10 minutes a day!

Until next time . . .
PEACE

B

Still Riding that High

Still Riding that High

Have you ever gone somewhere or had an experience that stuck with you for days, weeks or months after? I describe that type of feeling as a high (not drug induced) or a euphoric feeling, like catching the perfect wave and you ride it all the way to the shore. THAT kind of feeling.

Well, I’ve been in my “euphoric state of mind” for the past week and it was all due to a conference I attended in Atlanta, GA. The “Dementia Conference and Technology Showcase” was put on by Dementia Action Alliance of which I am a member of the Advisory Board. (being I’m a member of the Board has nothing to do with the way I’m feeling) The conference theme was Re-Imagine Life with Dementia . . . Engage – Empower – Enable. To you, they may be just words but to me, they were so much more.

I’ve been to Dementia conferences in the past and they have been great, informative and educational, but the one ingredient that was missing was inclusion. For those of us Living with Dementia, we are often spoken to or spoken about, but not heard from. Other times, we are there for other people to say, “Oh look, there are the people with Dementia! It’s so nice to see them out and about!”  Kind of makes us feel like a side show at the circus. 

This conference was all about us. Hearing from US! Listening to US! Learning from US!

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We were not only included from the very opening of the conference, we were a big part of what the conference was all about, and then we closed out the conference. 

 

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We were on panels, we were part of break-out sessions. 
We were even part of an Improv event at the Buckhead Theatre with “30 Rock’s and voice-over actor ‘Jack McBrayer’.”

And the individuals we worked with, the Dementia Action Alliance and ALL the wonderful sponsors of the event . . . THEY GOT US! They Got “IT”!

I’ve given my “Alzheimer’s: Up Close and Personal” presentation to an audience in Washington, DC at the National Academy of Sciences. I’ve spoken at a conference, In Chicago, IL for a national Insurance company about what type of decisions to be made before the end of life. I’m honored to teach“Crisis Intervention Team Training” to Law Enforcement  Officers and First Responders. These types of instances are what I hold near and dear to my heart. 

Not to downplay anything I’ve done in the past, however, to not only attend but be a part of this conference was life changing. It wasn’t the participation as much as it was meeting others like me, others who I’ve been speaking to for years either through teleconferencing or video conferencing but have never met in person, people I have come to know and love, people who I call friends. THAT was the highlight.) 

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We weren’t gawked at or talked about. We were celebrated. We were spoken with. We were asked questions. We were INCLUDED in the conversation. WE MATTERED! Our Dementia-Related Illnesses were still there, but they were not what was seen.

WE WERE SEEN!   WE WERE HEARD!   WE WERE UNDERSTOOD!

I guess the best way to sum it up was something I tweeted a day after the conference ended. It simply stated:
“You know why #DAAcon17 was such a success? THEY GET IT!”
#dementiaawareness #dementia #livingwellwithdementia #dementialife 

THEY GOT IT! There was no other way to state it other than that. 

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And . . . somewhere along the way, we had some fun, just being ourselves, so much that a comment was made, “I’m having so much fun ‘I FORGOT I HAVE ALZHEIMER’S’!”
I may or may not have been the one to say that, but I forgot! 

Until next time . . .
PEACE!
B