Thursday, November 26, 2009

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) 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.

Thursday, November 5, 2009

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?

Sunday, October 4, 2009

Track, Basketball, Hiking and Multiple Sclerosis - Oh My!

I’ve tried really hard not to live my life based on my MS, but there are times I really doubt myself and fear rules; especially when there is a real potential for me to injure myself. 

However, I must admit that I was most pleased with my ability to deal with it last Tuesday and to trust in the very patient outstretched hand of my husband. I love you Josh!
My husband and I celebrated our eighth wedding anniversary last Tuesday (September 29th). Josh surprised me by taking me up to Logan, Utah where I lived during my college years while attending Utah State University. We spent our anniversary day hiking in Logan Canyon at the Wind Caves.
I miss high energy, sports and all manner of outdoors activities. There’s a great deal of trepidation that occurs in my heart and mind now, when I think about activities that involve light jogging or running, hiking, etcetera... 

From the Spring of 2007 to the Summer of 2008 I sprained my ankles seven times and fractured my left ankle once, all while experiencing less-effective walking on relatively stable ground.
The recollection of the "Ankle Fiesta of ‘07-’08" is especially humbling and especially difficult because I recall very well being on the basketball team at my high school and even at church with the young women of my area. 

I remember the thrill of running the two hundred yard dash in track events. I vividly recall the dedicated practice when learning how to pass a relay baton, while not breaking speed or dropping the darn thing.
I may not have been the best track athlete (I was really just a filler-body to the filler-bodies in that sport). Probably, the only reason I was picked to play basketball was because I knew how to knock people off their feet with my monster hips. 

I Lettered in basketball, probably only because of my hips and the fact that I had a pretty good three-point arm, but aside from that I have many great memories of torturous practice drills. 

I remember being completely capable of performing on the court, while running, throwing, catching, dribbling and defending. I remember these things and think of them most often when I struggle physically.
So there I was, at the beginning of the trailhead for the Wind Caves, reading the description and feeling angry at the fear I was feeling. I remained silent because I’m tired of hearing my own verbalized worries and complaints, so... I began hiking the 9nine hundred foot ascent, three and six-tenths of a mile roundtrip with a relatively narrow footpath.
I took it one step at a time. There were definite pauses. There was patience and endless encouragement from Josh as we took the mountain at the Diana pace, switchback after switchback, step after step, taking important breaks for the sake of my left leg but we eventually made it to the top. Wahoo!! But making it to the top was only half the battle...
What goes up must come down, and so when the time came, we did. Going down the nine hundred feet was physically easier than going up it for sure; however, going down I now had very tired legs and a barely working left leg. 

I had to work very hard not to go too quickly. I had to watch each step and in some cases hold Josh’s shoulders or hand (as determined by the very narrow path). 

It was during this hike that we determined that I need hiking sticks for balance. But I never fell! My legs sure bounced and jittered, but I never fell.

This may seem small and trivial, but it meant so much to me. I desire to be mobile and active. I want to do these kinds of things more often with Josh, with my children and with friends.
At one point in the hike, I tried to explain to Josh what my legs were really experiencing. And it went like this:
  1. When walking normally, it’s common for my left leg to feel like a weight is pushing against it. As time and exertion continues, there’s a virtual weight that appears behind my knee and prevents the sensation that the knee is actually bending appropriately.
  2. After enough continued exertion, I can no longer feel my left knee (however I do feel pressure of activity).
  3. This activity causes my right leg to attempt to over-compensate. After enough time passes, both legs will begin to jitter and bounce beyond my control, thus causing my balance to be in worsened jeopardy.
  4. Somewhere between effects one and two, my left foot will drag and I have difficulty in the mechanics of taking steps correctly. Then it becomes like trying to walk with flippers on. I know that in general flipper walking is entertaining and great for mocking opportunities, but when your knees are already jittery and unfeeling, it can become quite dangerous and unnerving; especially when walking downhill with big rocks all around and a steep fall to one side.
In this trek, support, belief and determination to succeed became the themes that lingered, resonating in me. I can’t give up and back away from doing the things that make me afraid, because when I do, I will lose more than just opportunity - I will lose me.
Even with modified activities (when or if that time comes) I still must push through and do the things I doubt that my body can do. It is the doubt that keeps success from becoming realized. It is the doubt that must be destroyed.