Mind Games

The last few years have been a conglomeration of really deep thoughts; way beyond Jack Handy’s attempts. 

I’ve come to understand so much about myself, life, my beliefs, marriage, future, goals (personal and combined with those around me), and my journey with Multiple Sclerosis; just to name a few. 

I feel that I’ve really come to understand the power of the mind and the demons within it. I also have a feeling that I’ve only just scratched the surface.

I firmly believe that the minutia doesn’t really matter, just so long as those itty-bitty details don’t take us away from the core of who we are and what we believe. 

If the little things have potential to degrade, distract, or become bigger problems that mess with the core, then we ought not to engage. 

This requires being honest with ourselves - truly honest. Don Miguel Ruiz has it right in so many ways in his books “The Four Agreements” and “The Voice Of Knowledge”. 

Compiling what I agree with in those books to my own personal beliefs has been really eye opening. But it’s more than just the combination of secular and spiritual knowledge. 

It’s the addition of patience, reflection, and discipline. We live in a world of NOW, so patience and discipline are almost foreign concepts. 

Reflection is as well; we are used to having our ears plugged in to something... I know. I am guilty in many ways.

So much of what we achieve, deal with, overcome, and do on a daily basis is defined by our perception(s) and not necessarily reality. 

Yet, if we pause, reflect, apply patience, and use discipline in our actions, re-actions or speech, I believe we might be able to see the situation for what is really is - an opportunity. It’s an opportunity fresh and waiting to be designed, by you.

Mountains Moved And I Just Ran A Mile - Unassisted!

So there’s a 5K in September that I want to run. I want to do it without the aid of my trusty jogger stroller for the sake of balance.

I want to do this run. I need to prove to myself that I can do this. Today I took myself to the track field of a local high school and decided to see what sort of trouble I’m in for; without the aid of the jogger stroller. 

I walked/jogged/ran that and did a mile in thirteen minutes!!!! I know I could’ve run faster, but safety was at the forefront of my mind.

There was one point where I was doubting that I could or should be doing this and then Pat Benatar was sounding in my ear with “Hit Me With Your Best Shot” and it occurred to me, I can do anything I set my mind to. 

Even if I were in a wheelchair, I could push myself around the track. I can do this! I’m not gonna' let MS rob me of what I CAN do, especially when I CAN do it. 

Then “I Believe” by Diana DeGarmo started to play in my ear and I found my focus and released the doubt; I ran. My left leg started to poop out on me in the last lap and then “Dressed For Success” by Roxette brought me in with a strong finish with the first line ringing in my ear.

“tried to make it little by little, 

tried to make it bit by bit on my own” 

And I did; little by little, bit by bit. Because of that song hitting me just right, I smiled the last bit of that run and that smile, that joy, filled me beyond description.

I cooled down just contemplating over the experience and then as I walked back to the car, Joan Baez filled my soul with “Through Your Hands.” 

I’m even more excited because this song means a lot to me and I get to see her in concert this Wednesday. The truth of what this song means to me hit me and hit me hard.

You were dreaming on a park bench

about a broad highway somewhere

When the music from the carillon

seemed to hurl your heart out there

Past the scientific darkness, past the

fireflies that float

To an angel bending down to wrap you

in her warmest cloak

And you ask "What am I not doing?"

She says, "Your voice cannot command,

In time you will move mountains

And it will come through your hands."

I’m in tears as I write this. I’m overwhelmed by the joy that I feel. Because:

...whatever your hands find to do

you must do with all your heart

There are thoughts enough to blow men's minds

and tear great worlds apart

There's a healing touch to find you

on that broad highway somewhere

To lift you as high as music running

through an angel's hair

Don't ask what you are not doing

'Cause your voice cannot command

And in time we will move mountains

And it will come through your hands

And So It Goes...

When joy happens, I celebrate it. When frustration impedes progress, I swear, dwell a little and then move on. When excitement occurs, I am filled with wonder while enjoying the reaction(s) of others. 

Sadness enters the room and I am amazed at the various responses of those around me, while hoping I’m unnoticed long enough to get a grip before I truly respond. 

Regardless of the type of event and the impact, embracing what was learned and then moving on with the new knowledge is crucial. 

I remember times when I’ve sat down and wallowed in pity and have also compared it to being able to pick up and move on. 

I also recall reveling too long in the joy that I failed to see the reality and impact of what slowing down and becoming lazy can do. 

Josh once shared with me a quote about how when boating, the captain must constantly be checking the direction, monitoring the effects of the ever changing weather and how those conditions can alter, enhance, and hinder the progress of sailing. 

A little checking there, a little tweaking here, being mindful of the subtleties in the wind can make all the difference on arriving at the intended destination on time and safely. 

Suddenly the full ramifications of the term “sailing” took on a completely new meaning to me. Rude awakenings occur when ignorance and negligence are present, whereas being aware of the potential of subtle shifts and tracking them aid in gaining more ground (progress) in the long run. 

This constant action of checks and balances in life make things appear to fit together at the right time, just in time, all the time; which give the effect of “sailing”. 

This sailing may not have always been smooth, but more ground was covered almost by leaps and bounds. 

Though there are scary moments in sudden shifts, and while at times it may also have the appearance of trudging through the mire, you still cover more ground. 

You still are propelled at just the right speed, to pick up and find yourself further along (in a good way) than if you’d just let the wind and waves push you wherever they could; without direction or care from you.

“Life” is what happens when we simply let the wind control our direction. “Living” is a conscious effort of aiding the wind to get us where we need to be. 

Sailing requires more action than drifting. I have drifted. I prefer sailing.

Free At Last With Trekking Poles!

In April, I asked my husband, Josh, what he’d like to do before he leaves on his deployment to the Middle East in mid-June. He said hiking at Natural Bridges National Monument. 

I then pulled up the website for the hikes and terrain of the area and my heart sank. Hiking the Wind Caves in Logan (experience noted in a prior blog entry “Track, Basketball, Hiking and MS Oh My!”) was one thing, but the Natural Bridges?!?!

I must admit I felt some inner despair and self-disparaging thoughts. Josh said that he thought I might be able to hike if I had some trekking poles. 

I was doubtful, but I found myself silently humoring him (shh... don’t tell him). We went to the store and found a pair of trekking poles and then in May we took off for a long weekend camping and hiking in Southern Utah.

Long story short: I hiked over slick rock, through sand, crossing creek beds, down three ladders, handled an elevation change of probably about a thousand feet or more. 

In total, I hiked for four hours straight (which was the prescribed amount of time that it would take). Never once did I: get wet feet, need Josh’s helping hand, fall, injure myself in any way. 

Because of the balance that the trekking poles provided, I was able to stay up on my own two feet the entire time!!! I did it!!!

Half of the battle in overcoming a challenge is being willing to submit to a different route, in order to accomplish the same end result. 

The other half of the battle is believing that the desired result can be achieved. Thanks to the faith of my husband (when I doubted), ingenuity of Black Diamond Trekking poles, and God’s continual helping hand, I have a new cherished memory and experience. We did it!!!

Sinking, Swimming, Surfing

(Josh & Diana, Feb 2008)

(Josh & Diana, May 2010)

Note to Self:

Don’t forget the personal success that you’ve had this last year. It’s easy to overlook our own accomplishments and to not accept the amazing strides that you’ve made, especially when you’re not exactly where you want to be. 

In 2008 you lost twenty-six pounds in four months and as one of your New Years' resolutions for 2009 you decided that you would loose at least a pound a week (i.e., fifty-two pounds). 

You not only shed the weight (plus three additional pounds), but you have consistently kept it off. I know that you want to lose another thirty pounds, but you need to allow yourself patience to lose it the right way. You are worth the effort, you have the patience, you will meet your goal.

Don’t forget what it was like to go shopping last week for new pants and to find that for the first time in many years that you didn’t find the pants that fit you in the Plus Size section of the store. 

Remember what it was like to box up all of the bigger size clothing in the “Steroids Happen” bin downstairs. Remember what it was like to make a decision about what size clothes that you would never find yourself in again, and what it was like to take those clothes and donate them. 

Remember what it was like to go biking in Ireland - you struggled, but you did it and it was beautiful.

You will have ups and downs in life. That is the nature of living and not necessarily just your disease. You’ve met many personal goals in 2009. Make 2010 even better. 

You have the power to do anything that you set your mind to. Just look at the goals that you have accomplished, even with MS in the picture.

The weighty issue addressed in this letter is not the main focus of what is to be learned - rather it’s the example of a bigger picture. Attitudes, expectations and unrealistic self-perceptions are what are being addressed here.

Life is an adventure of curve-balls, winding roads, epic journeys and emotional milestones. It is our responses and reactions to these things that determine the outcome(s). 

Do you choose to sink or swim? Sometimes, when the conditions are just right, we can even find ourselves surfing; but it requires swimming first.

Best Regards,

Me

A Thanksgiving Tribute: To Don, With Love

Don & Roxie

My father-in-law (Don) was one of the greatest men I’ve known in my life. I would have liked more time with him. Unfortunately, he passed away this past February from cancer.

Question: What does Don have to do with Multiple Sclerosis?

Answer: Everything.

I witnessed courage, strength, defying odds, tenacity, etcetera in such a way that I think I will spend the rest of my life finding out all the ways that Don has impacted the way that I live with my MS.

There are two key philosophies that I can say I learned from Don, which are: 1) the mind is a powerful tool and 2) the way we live our life is our most precious possession, not the “things” that we accumulate.

~

The first time I met Don, he was sitting in his humble trailer. He spoke to Josh and me just as he would have if he were in his Sunday best. At first I wasn’t sure what to think of him. 

However, I could sense that I was speaking to a man who knows exactly who he is, immediately accepts me for who I am, genuinely wants to learn as much as he can in that moment, and he loves me, his son, his dog and his own life equally. I know that last one sounds a bit odd, but that’s part of the beauty of Don.

The Mind: A Powerful Tool

About a year after Josh and I married, Don was diagnosed with Inclusion Body Myositis (IBM) http://en.wikipedia.org/wiki/Inclusion_body_myositis. Doctors told him many things, but the main idea was that it would be less than a year before he would be severely disabled by this disease and in a wheelchair. 

He also was told that this disease, although a form of ALS (Amyyotrophic lateral sclerosis), would attack and destroy only the muscle with the exception of the heart muscle and that it could leave him a total vegetable but would not take him. 

With this devastating news he and his wife left the doctor’s office. From that moment, Don was determined to defy the odds of that disease… and he did.

Don never willingly submitted to his body’s decline. He relied on his faith and religious beliefs which told him he still had work to do in this life. He kept serving and doing. 

He complied with the doctors when the advice made sense to him. He followed his body’s own instincts into the realm of alternative therapies and was blessed. He filled his time with service and continued living life. The biggest point is that he was as proactive as he could possibly be.

“Things” Don’t Matter; It’s What We Do With Our Life That Counts

Though rapidly losing muscle mass Don predominantly walked with just the aid of a cane after his IBM diagnosis. He eventually used a wheelchair, but not exclusively – he preferred to get up on his own two feet. 

After a time it wasn’t safe for him to drive, but it wasn’t the collection of cars that he lamented; it was the journey and the company in the car that he missed. One day he decided that he would take his trusted dog Roxie out for a walk; well Roxie walked and Don supervised from his Jazzy wheelchair. 

After a time Roxie became so tired that she wouldn’t walk any further. To solve the problem and get her home, he had Roxie stand her hind legs on the footrest of his wheelchair and her front paws essentially hugged Don. 

That was a special time and memory that simply emulates the core of who Don really was on so many levels. Don loved, lived, did and made special memories out of most everything.

The last two years of his life required the use of a walker indoors and his body’s deterioration then forced him to a wheelchair when leaving the home. This did not stop him. He kept pushing to meet every commitment he had made. 

His great desire was to continue living life with his wife and his family. He did not want to leave that which he had come to love so very much.

In January 2009 Don called to tell us that he had just been diagnosed with an advanced stage of cancer. He sure kept pushing though. Up until the last few days of his life, he used a walker to get about. 

In his fight with cancer he was unable to eat and went from approximately one hundred sixty-five pounds to about one hundred twenty-five pounds. Don had really no muscle on his body in the end, but he moved, he walked and was determined to engage.

Don never limited himself in the years that I knew him. When he believed in or wanted something, he went to work - even near the end. In fact, Don’s brother Ray and a friend took Don for a ride in the friend’s Humvee. 

The Hummer ride was kind of a “last wish” and hurrah. The Sunday before Don’s passing his brother and friend picked him up and put him in the vehicle to take him for a ride and off they went! They were gone for about five hours. 

They went off-road with him! Snow fell through Don’s window as he stretched his arm out as far as he could; laughing and loving every minute! When they got back Ray told me that Don’s only regret was that he didn’t have the energy to get under the vehicle and “see how it all worked...” He wanted to know how the tires inflated and deflated as needed according to snow depth.

During our six-week vigil, Don would just lie on the couch and listen to his kids talk about the good ol’ days and all the trouble they’d get into that Don didn’t know about. The last night he sat on the couch with us in the living room, then decided he was done and needed to go lay down. 

As usual, he refused all help to get off the couch, except for a strong and steady foot against his own to prevent him from slipping. After several attempts and many minutes he was able to steady himself at the walker and go into the bedroom. 

While watching him I saw pure nerve and determination move his limbs. It was raw nerve, not muscle, driving his ability. It was just a day or two later when he passed on surrounded by those he loved most dearly.

This next to last memory of Don as well as the entire six-week vigil will be one of the things that I will ponder for the rest of my life. I have many more lessons to learn from this experience alone. 

The impact has motivated me to take better care of myself, treat those around me with more respect and to live in the now despite how difficult it is to get off of the couch.

Narrow Daylight and The Peace It Brings

Close your eyes, take a moment to yourself and drink in the peace that these song lyrics bring. Point to ponder: “are we stronger than we believe?” If you have the audio of this song, I strongly encourage you to press play, if you don't, well then... invest!

When I hear things like this, prayers (old & new) are answered, healing occurs and suddenly I have the faith, hope and courage I didn’t think I had...

Narrow Daylight by Diana Krall (click here to play on YouTube)

Narrow daylight entered my room

Shining hours were brief

Winter is over

Summer is near

Are we stronger than we believe?

I walked through halls of reputation

Among the infamous too

As the camera clings to the common thread

Beyond all vanity

Into a gaze to shoot you through

Is the kindness we count upon

Hidden in everyone?

I stepped out in a sunlit grove

Although deep down I wished it would rain

Washing away all the sadness and tears

That will never fall so heavily again

Is the kindness we count upon

Is hidden in everyone

I stood there in the salt spray air

Felt wind sweeping over my face

I ran up through the rocks to the old

Wooden cross

It's a place where I can find some peace

Narrow daylight entered my room

Shining hours were brief

Winter is over

Summer is near

Are we stronger than we believe?