Friends! We’ve all had them throughout our lives. We’ve had good friends, school friends, college friends, business friends and BEST FRIENDS!
The Best Friends are the ones that, if you’re lucky, last a lifetime. Sure, life gets in the way and may prohibit you from speaking to one another on a daily basis, but the communication is still there whenever you can make time. You catch up, find out what the other is doing, laugh, reminisce, and try to make a date and time you can talk again. Sometimes it works, and sometimes life and priorities get in the way. Somewhere down the road you’ll catch up and pick up right where you left off.
What happens when “LIFE” gets in the way and includes illness, maybe not to you but to a spouse, a child, a parent or grandparent. What happens to those friendships?
I can speak only of my friendships and I can honestly say, it has been been a mix of being happy, sad, lonely and surprising. I could easily blame it on many things like moving to Florida 30+ years ago, losing touch with folks who have moved and not know where they went or what they’re doing now, and I’m certainly not going to blame it on my Alzheimer’s. That would go against everything I speak about. By using that as an excuse it would make me a liar and I could no longer say “I don’t allow Alzheimer’s to define me.!”
To be honest, I don’t blame it on anything other than time and life! Those are two things that are in perpetual motion, that is until life comes to an end.
I must say, since my diagnosis in 2014, I have made some pretty remarkable friendships. Some are more of acquaintances, some are near, some are far, some are somewhere in the middle and some are re-acquaintances from decades ago. (Thank You Facebbook and other Social Media).
One such friendship I hold near and dear to my heart is with Sandy Halperin. Because of Alexander “Sandy” Halperin, I became an Dementia Advocate, a member of Dementia Action Alliance, a member of the Early Stage Advisory Group of the National Alzheimer’s Association in Chicago, IL, which opened up countless opportunities to speak at the National Academy of Sciences in Washington, DC, The National Institute of Health (NIH), and many other conferences, symposiums, and Educational Presentations.
On September 20, 2016, Sandy “literally” passed the Advocacy baton to me. He knew he was not able to do as much advocacy as he had been doing throughout the years so he passed the baton to me, with 1 requirement . . .
When it comes time that I am not able to continue my advocacy, I am to choose a recipient to pass the baton to. My name will be inscribed on the baton as Sandy did when he passed it to me. Fortunately it will not be ANY TIME SOON for I still have A LOT TO SAY!!!
Sandy has given permissions to Maureen and I and a few other folks to post information on his LinkedIn page. He has 30,000 followers on his page and he did not want the page to be empty of current news, stories and Research. So, we utilize his page to continue spreading the word and we are so thankful for him giving us the opportunity to speak to 30,000 of his closest friends.
Sandy’s friendship is more than just a friendship. We are two people from different backgrounds but it was Alzheimer’s Disease that bonded us.
It was Alzheimer’s Disease that taught us ways to live with the Disease as well as we possibly can. It was Alzheimer’s Disease that gave us a platform to speak from.
It is Alzheimer’s that will keep our friendship going.
We both know that it will be Alzheimer’s that will cause other medical issues to take us away, but we don’t worry about that. We still have a lot to say and a lot to write.
Neither Sandy nor I want sympathy from anyone. We often talk about what we don’t want rather than what we do want. What we do want is for everyone to know we lived a full life. A life of passion, a life of hope, a life of love and a life of friendship!
Until Next Time . . . PEACE!
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.