POST BY RICH: Climbing

Ok. Today, I’m in the “cheerleader” mood in our fight for inner peace. You know, if you’ve read my other blogs, (and if Patty posted them) that my outlook on “the fight for inner peace” has not always been positive. I’ve had, and continue to have, days where I feel like crap and would want to kick the crap out of anyone who gave me the “cheerleader” rah, rah junk when I’m in Hell experiencing the pain from my demons! So, if you’re having one of those days today, and would like to kick the crap out of me for what follows, please, don’t read on.

I just heard this for the first time. Interpret it how it fits for you. I did. Today, it is helpful. Tomorrow, well, I may feel like kicking the crap out of myself!

“The Climb,” sung by Miley Cirus –

I can almost see it; that dream I am dreaming.
But there’s a voice inside my head saying ‘You’ll never reach it.’
Every step I’m taking, every move I make feels lost with no direction.
My faith is shaking, but I gotta keep trying.
Gotta keep my head held high.

There’s always gonna be another mountain.
I’m always gonna wanna make it move.
Always gonna be a uphill battle.
Sometimes I’m gonna have to lose.
Ain’t about how fast I get there.
Ain’t about what’s waiting on the other side. It’s the climb.

The struggles I’m facing, the chances I’m taking, sometimes might knock me down.
But no, I’m not breaking.
I may not know it, but these are the moments that I’m gonna remember most.

Yeah just gotta keep going.
And I, I got to be strong; just keep pushing on.
‘Cause there’s always gonna be another mountain.
I’m always gonna wanna make it move.
Always gonna be a uphill battle.
Sometimes I’m gonna have to lose.
Ain’t about how fast I get there.
Ain’t about what’s waiting on the other side.
It’s the climb, yeah!

There’s always gonna be another mountain.
I’m always gonna wanna make it move.
Always gonna be an uphill battle somebody’s gonna have to lose.
Ain’t about how fast I get there.
Ain’t about what’s waiting on the other side.
It’s the climb, yeah!

Keep on moving.
Keep climbing.
Keep the faith.

Baby, it’s all about, it’s all about the climb.
Keep the faith.
Keep your faith.”

I find the words helpful in my battle. But, I don’t agree with all of them. For example, the “mountain” of which she speaks, I see as the inner peace I so desperately seek. In that context, it IS how fast I get there. It IS about what’s waiting on the other side. Yes, to get there you have to “climb” the mountain. You have to keep on moving and you have to keep the faith that it waits on the other side, whether it comes from therapy, medication, meditation, a combination of each or any other process that brings that inner peace to you.

In the word of my loving sister, Claire – Namaste.

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POST BY RICH: The Power of Prayer, Meditation and Positive Thinking

I am not a “formally religious” person, however I follow a spiritual path and believe in a higher power.

Since I have been struggling with this illness, family and friends have told me with extreme sincerity, that they pray for me. They do this in a formal religious manner, a spiritual manner and a more non-religious or non-spiritual manner. Other people have stated that they maintain a daily routine of meditation or positive thinking for my relief from the daily pain of depression, anxiety and its related demonic cousins.

I appreciate the time they take to spend a moment or two sending good thoughts my way. Often days, I can feel the energy from their efforts. Other days, I’m so wrapped up, or taken over by the emotional problems that I can’t even carry on a conversation with Patty. Nonetheless, there is power in their efforts. The energy they put out is heartfelt and genuine. I am grateful and appreciative for their “blessings.” The thought that they are there for me is comforting and reassures me I have a team of people that are contributing to my fight for emotional stability and survival.

Then, there are my personal prayers, meditation and positive thinking. I use them all. I use these when I have the ability to do so. Sometimes, I am so overwhelmed by the pain of my internal struggles, that I can’t think of anything positive to apply towards my health. To the contrary, I can’t think of a damned thing, of a positive nature, that gives me any relief.

When I’m in the pit with the dragon, I’m IN THE PIT WITH THE DRAGON! There seems to be nothing I can think, say, do or otherwise give myself for comfort. That’s just the way it is.

The point of all this is to open yourself up to, at the very least, the gifts your family and friends send your way.

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It cracks me up that Rich wrote a post about “have a nice day.” I have been writing one in my head called “have a great weekend.” We haven’t discussed this much and I had no idea he was writing about it.

There is this new trend with retail sales people to inquire, with great enthusiasm, “How is your day going? Have any great plans for the weekend?” For quite awhile I have been bristling inside when I hear these platitudes. Besides feeling insincere, as if their employers have scripted the statements and demanded the employees say them, they actually feel intrusive. I have found myself not wanting to go through Dutch Bros Coffee or through the line at Holiday Market because both of these places have this practice firmly in place. I’m tired of lying and acting like things are wonderful and at the same time do not want to tell strangers the situation we are going through.

A few weeks ago, I was in the Verizon Wireless store replacing my phone when the sales person began the “are you having a great day … any plans for the weekend” commentary. I started off saying, “nah, nothing special.” When she began, “oh come on, you must have something fun planned,” I said, “actually my husband is very ill and making plans right now isn’t possible.” I thought that would put an end to the diatribe. She went on to sympathetically inquire, “oh I’m sorry, does he have the flu or something?” Maybe I cracked a little, but I sweetly replied, “No, he has a terminal brain disease and things have been really bad.” She started stuttering a bit. I don’t know what she said after that.

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“Have a nice day.” How often to you hear those words? Once a day? Several times a day? Do those who utter the words really mean them?

I tell you that every time I hear them, I want to puke! For me, who suffers from mental health problems, I rarely “have a nice day.” Truthfully, I cannot remember the last time I had a “nice day.” Every day sucks!

Where did the phrase, “have a nice day” come from?

I found my information from Wikipedia, the free encyclopedia.

“Have a nice day is a commonly spoken valediction, typically uttered by service employees to customers at the end of a transaction, particularly in Israel and the United States. Its repetitious and dutifully polite usage has resulted in the phrase developing a cultural connotation among some listeners as representing impersonality, lack of interest, passive–aggressive behavior, or sarcasm. The phrase is generally not used in Europe. Many European commentators have stated that it seems artificial or even offensive. Critics of the phrase characterize it as an imperative, obligating the listener to have a nice day. Other critics argue that it is a parting platitude and a trite space-filler used to prevent embarrassing silences. While defenders of the phrase agree that “have a nice day” is usually insincere, some consider the phrase to be comforting, in that it improves interactions among people. Others favor the phrase because it does not require a response.

A variant of the phrase—”have a good day”—is first recorded in Layamon’s Brut (c. 1205) and King Horn. “Have a nice day” itself first appeared in the 1948 film A Letter to Three Wives. The phrase was subsequently popularized by truck drivers talking on CB radios. Variations on the phrase include “have a good one” and “have a nice one”. In conjunction with the smiley face, the phrase became a defining cultural emblem of the 1970s and was a key theme in the 1991 film My Own Private Idaho. By 2000, “have a nice day” and “have a good day” were taken metaphorically, synonymous with the parting phrase ‘goodbye’.”

“Its repetitious and dutifully polite usage has resulted in the phrase developing a cultural connotation among some listeners as representing impersonality, lack of interest, passive–aggressive behavior, or sarcasm.” Other “critics argue that it is a parting platitude and a trite space-filler used to prevent embarrassing silences.”

That’s my point. In other words, I take it as a “parting platitude and a trite space-filler used to prevent embarrassing silences.” Another word to describe this is, “phony,” as it does not necessilary come from the person saying it as being sincere.

Hence, part of my point is that it is baloney. The other point I want to make is that, I, personally, don’t have a “nice day.” Every one of my days is filled with depression, anxiety, anger, sensory overload, being overwhelmed and/or a combination of all of them. Patty says the last time I had a “nice day,” was the day before her birthday. That was in January! Let’s see: I guess that’s not so bad; one “nice day” in approximately six months!

Am I jealous of those who have “nice days?” Hell, yes! Do I envy those who have “nice days?’ Hell, yes! Am I feeling sorry for myself? Hell, yes!

I am sick and tired of having people say those words to me. I want to respond by telling them to take their words and shove them where the sun never shines!

What do I say when I’m in a position where that stupid phrase is presented to me? “See ya later.” Or, what do I say when I’m in a position where it is normally said? “Hello.”

I hope, for you out there who suffer from depression or any/all of the feelings I stated above, that you have the experience of having a “nice day.”

I would love to have “a” nice day even once a week! But, it doesn’t happen!

Yep, I’m pissed off!

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Illness in a home affects everyone. It touches each person in a variety of ways. Ally wrote this sign tonight and I did not even know what to say. I guess because she is right. I don’t think I’m fun anymore either. Fun takes energy, time and the ability to put everything else — all the gotta do’s aside — and just be. Tara talked to Ally about the sign and Ally said she didn’t mean to hurt my feelings. I told her I understood that I’m not much fun right now and that she gets to say that out loud. I guess the one thing we can stay good at is telling the truth and letting that be okay.

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POST BY RICH: Reach Out For A Friend

As you know, if you’ve been following my blog, I walk everyday to exercise and, more importantly, to find some peace of mind even for a little while. While I walk, I listen to music as a further support for emotional calmness. Every once in a while, I come across a song that connects with what my wife, Patty, has gone through in the past, in current times and, I expect, in the future. I post this for her and for you, the families of FTD’ers. I also post it for the FTD’ers themselves. I imagine there is a person who fits the category of strength and support for you, when you need it the most. On the flip side, if you are a friend of an FTD’er family member, this would be appropriate for you, as well.

If you can listen to this music and read the lyrics, you’ll find a good loving and gentle song. I hope this helps you.

“Let It Be Me,” sung by Ray LaMontagne

“There comes a time; a time in everyone’s life.
Where nothin’ seems to go your way;
Where nothin’ seems to turn out right.
And, there may come a time, you just can’t seem to find your place.
For every door you open, seems like two get slammed in your face.
That’s when you need someone, someone that you, you can call.
And when all your faith is gone,
It feels like you can’t go on.
Let it be me.
Let it be me.
If it’s a friend that you need,
Let it be me.
Let it be me.
Feels like you always commin’ up last;
Your pockets full of nothin’, ain’t got no cash.
No matter where you turn, you aint got no place to stand.
You reach out for something and they slap your hand.
Now I remember all too well,
Just how it feels to be all alone.
To feel like you’d give anything
For just a little place you can call on.
That’s when you need someone, someone that you, you can call.
And all your faith is gone,
Feels like you can’t go on,
Let it be me.
Let it be me.
And, if it’s a friend that you need,
Let it be me.
Let it be me.
Let it be me.
Let it be me.
And, if it’s a friend that you need,
Let it be me.
Let it be me.
Let it be me.”

Let It Be Me by Ray Lamontagne

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I just need you here

Sometimes I look at Rich and say, “I just miss you.” He usually answers, “I miss me, too.” This stupid brain issue, whatever it is, has taken so much of him from both of us… from our family and friends. He has become “the shadow man.” Sigh…

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Rich’s intention to do chores and his actual follow-through are two very different things. Sometimes it takes little reminders and then it MIGHT get done.

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Well, as you can see from Patty’s added remarks to my blog from yesterday, despite my “trying,” the hours after my workout, and the remainder of the day, went down the toilet. So much for “trying” to be supportive and act like a cross between a cheerleader and a Marine Corps drill instructor!

“Meltdown,” is the term I would describe. I cried during my workout. I cried after my workout. I cried when I went to Jamba Juice to get a drink when one of my previous clients (now 19), who works there, came out to say she heard about me and was sorry to hear it. She told me about the positive influence I made in her life and how she’ll always appreciate that I really cared for, and was there for, her in the most difficult times of her life. I cried when I bumped into a friend after going to Jamba Juice.

I cried and cried and couldn’t stop, no matter how hard I “tried.” I feel a bit hypocritical as I write this because of my blog comments yesterday and the fact that despite my strongest efforts to “try” and keep the crying (DRAGON) away yesterday, I failed to do so.

“We,” the FTD’ers and families, are just subjected to this horrible disease. We are at the dragon’s mercy. Despite the crying yesterday and the depression/anxiety this morning, I still have to advocate for not giving in. In other words, I still have to stand by my word, “try.”

I was incapable of trying this morning due to my emotions. But, it’s early in the day, and I will try to do my workout later.

I now realize that it’s easy to give positive pep talks, with good intentions, but it feels phony when the person doing so can’t follow through with their own advice when things are tough!

That reminds me of the saying: “When the going gets tough, the tough get going.” Maybe, my “warrior’ will surface today and I’ll get going with my cheerleading advice from yesterday.

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“Try.” A word consisting of three letters. A small word? No! Why? Because to “try” means to put out an effort to accomplish a specific goal. Go ahead and ask yourself, “how often have I set goals and succeeded? I don’t know about you, but I’ve set many goals over my life time and have been lucky enough to achieve many, but certainly not all. It all has to do with the motivation, desire, capacity and capability to “try.”

In December 2011, after suffering depression and anxiety for over 35 years, I was formally diagnosed with Major Depressive Disorder – Severe; and, Generalized Anxiety Disorder. Despite the multitude of psychotropic (anti-depressant) medications and cocktails thereof over many years, I’ve was also diagnosed as being “medication resistant,” because nothing worked. So, after research on my part, and consultation with my psychiatrist, it was suggested that I try electroconvulsive therapy (ECT – otherwise known as “shock therapy”). Well, that didn’t work either.

So, Patty said it was time to get a psychological evaluation by a neuro-psychologist. I did. The result: a diagnosis of Frontotemporal Degeneration (FTD). The doctor’s conclusion was that my frontal lobes are being affected first. He said that the frontal lobes control emotions. Hence, given that this is a physiological issue and not a chemical one, the meds couldn’t ever work to solve my depression.

As time goes by, my emotions are all over the place. I can experience depression, anxiety, irritability, anger, sensory overload and a combination of all in one day’s roller coaster ride. Or, if I’m “lucky,” I can experience just one of those emotions in a day. But, I experience at least one every day.

That’s why it’s important to “TRY.” You ask, “try what?”: anything to help chase the dragon away, at least for a while.

For example, this morning I was experiencing anxiety. It became increasingly stronger as the early morning hours ticked by. So, in an effort to accomplish the goal of getting away from the dragon, I took my daily walk. After approximately one hour of walking, the anxiety increased to such an intensity that I started crying. Yep, I’m walking the trail (which, thankfully was not crowded) and crying out load with tears rolling down my face. I couldn’t stop. So, I called Patty.

She said that she’d come and get me. I told her, “no, I have to fight this and literally get the anxiety out of my chest. In other words, I had to put out the effort to accomplish the goal of getting away from the dragon (in other words), I had to “TRY” by walking it off. As I continued to “try,” I passed a friend, Lorie Burch. She looked at me and asked if I was okay. When she stepped up to me and put her arms around me, I lost it. Lorie held me sobbing on the trail. She was an angel. I called Patty again, who had not left for work yet, and sobbed into the phone. On her way to work, she drove by to check on me. I was still upset, but I told her I was going to keep walking (“trying”). A short time later, my youngest daughter, Ashley, was waiting in her car about a mile away from where Patty stopped me. She was the backup “tow truck” in case I needed to be hauled in. I was still upset, but told her I was going to keep going (“trying”). So, I did.

I finished my walk and then did my weight workout. Guess what? The majority of the anxiety disappeared by the end of my workout. As I write this, I have a miniscule amount of anxiety (not even really worth mentioning).

My point: don’t give into your emotions, if possible, whether you are an FTD’er or his/her family. “TRY” anything that you think might help; but, “TRY!” Anything worth accomplishing requires “trying,” and if you really want to get it, you have to, at the very least, “TRY!”

(Note from Patty as she puts this onto the blog a couple of hours later: Rich slid into severe depression, again, about an hour after his workout. He is now escaping into sleep to try to keep the dragon away. It breaks my heart to watch him be so tortured.)

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