Sunday, December 9, 2007

Emotional Health... cough, cough

We all have “sucks to be me” moments, but why is this one taking so long? It is human to feel sad on occasion, but come to find out, when you have MS there is an increased risk that you can get a lesion that affects your mood and general emotional health. The medications that we take can also cause sadness or depression. How rude! Thank heaven for cute husbands, religion, doctors, yoga, cute dogs, gardening and music. I haven’t figured out all the secrets to life yet, but I am pretty sure that we are meant to LIVE IT...(*ahem*)...but recently, I haven’t been, and quite frankly it has sucked.

So, I go through the motions. I do the things on the “to do” list. I pay the bills. And then for some reason I sit and stare - thinking of nothing in particular and just feel sad. 2:30am eventually rolls around and I am either just falling asleep or suddenly awake with nothing in particular on my mind. I hate 2:30am. But I love my life.

I have asked myself many times, “How do you remain positive and hopeful when you have a tendency towards melancholy?” I don’t think I have a definitive answer, but I’ve found comfort and peace in reading about the great historical figures of American history. I feel excitement and exhilaration in the beauty of the earth and extreme landscapes, so I visit those places or look at pictures and read about them. Music has vital importance in my life and certain songs are reliable for pulling me into a better mental place. I’m sure in later blogs I will share some of them. For now, just know that logically we must experience these less than favorable moments, so that the antithesis of this crud can be as spectacular and joyful as they are meant to be.

Saturday, September 8, 2007

The Military & Multiple Sclerosis

I never thought I would marry into the military...
or have the need to say, “I have MS”.

When I first met my husband he was in the Army National Guard, now he is in the Air National Guard. I have experienced a lot as a military wife and I am sure to experience a lot more; I’ve no regrets. Regardless if you are Active military or National Guard, when you have MS, being a military family is incredibly challenging. As a matter of fact, being a military family is a lot like having MS.

There is a large amount of unpredictability, a physical and emotional roller-coaster, a lot of “hurry up and wait”, as well as moments of incredible learning about who you are and how far your limits extend. Patience is tried, but there are also moments of accomplishment.

When my husband went through his Officer training in Tennessee, there was a graduation program at the completion that I was able to attend. This program was a big deal, so the commencement was not a small event.

During the evening portion of the event, there was a table with a display that represented the fallen soldiers of all the military branches. I was touched at how the table was displayed. A representative in uniform for each branch carried a dress hat and walked slowly to the cadence of a very somber air. The great hall was very quiet throughout the presentation, with an air of respect, sorrow, devotion, absence, honor, memory, and that moment you were on hallowed ground. It is the memory of this experience that comforts me beyond explanation.

No matter our lot in life, regardless of our trials, 
human life is so precious and important that I know I can’t waste a moment of it.

I cry. I have bitter moments. I feel loss and frustration, but when I am through feeling these emotions that any human has the right to feel, I then have a responsibility to carry on and do what I can do - serving others that are still within arms reach.

I am at war. I’m a soldier fighting for normalcy, functionality, happiness, and me; and when I fall, I expect you to be there for me. I could share more military and MS experiences, but the one I have shared here is the most applicable. I have a little motto that I like to say a lot. I have said it in this blog before and it is a good one to keep in mind.

Living your life based on the unpredictability of MS can be
more detrimental than the disease itself.

To withhold opportunities, activities, and goals because you aren’t sure how your MS is going to affect you from day to day, only makes for a lonely and unhappy existence.

The military factor is nothing more than another obstacle. So I have to find someone else to inject my arms when Josh is gone. I have sole responsibility to maintain our home and finances...but I have also been blessed with awesome family, neighbors, co-workers, friends, and community. The thing that makes the biggest difference is letting these people in to help me when I am going it alone. Yes, it is hard. Yes, it isn’t fun when Josh is deployed or at drill when I need him, but it all boils down to the same thing regardless of the situation and that is how I let it affect me.

My husband is currently gone with the military for the next year. Earlier in the week, I was just fine. Yesterday I was miserable. Today I am sad, but productive. Tomorrow...tomorrow will be what tomorrow brings, but for now the forecast is positive.

Monday, July 16, 2007

Caretaker = Unsung Hero

Sometimes referring to a dictionary just doesn’t cut it. The reason that I am disappointed in the dictionary is because of the definition of a “caretaker”. 

If you were to look up the word "caretaker", you would get the following: “One that is employed to look after or take charge of goods, property, or a person; a custodian.” (Webster) Now that sounds fine, but it still misses the mark. To me, the definition of a “caretaker” would be better suited to say something like this:

“One who selflessly renders total support and
maintenance of goods, property, or person
without deadline or complaint.”

Caretakers, under my newly stated definition, clearly embody: Moms (which is the reason for my photo below), spouses, partners, children and anyone who is really willing to do the job (which makes room for a lot of people). I have two examples of a caretaker that I would like to share.

My nephew Andy has a tender heart and watchful eye. Andy is 8 years old and has been a helpful caretaker since the day he could walk. He spent the most impressionable years of his life watching his father lovingly and selflessly perform as a caretaker to my MS-affected sister; giving shots, cleaning, assisted living (on various levels), acting as a confidant and so on. To this day Andy watches over his mother like the average 8 year old would over his prized Spiderman toy.

Granted, Andy is the only one that is allowed to be mean or upset with my sister, but he makes darn sure that no one else talks bad toward his mother and that doors are opened, toys are off of the floor, dishes are put in the sink, and much more.

The second caretaker that I want to highlight is my husband, Josh. I am continually amazed by my husband. He has endless energy, incredible knowledge and desire to learn more, and has an innate loving kindness towards all cultures, people, and me.

With the aforementioned in mind, I think it is easy to see what an awesome caretaker (and spouse) Josh is, but let’s look at my favorite top attributes, for example and for giggles:
  1. His simply being a listening ear can work wonders.
  2. Helping with injections, shows a willingness in him to take part in this life-trial, which in turn makes me not feel so alone in this disease.
  3. He will just hold me, when my body can’t handle anything else.
  4. He provides a fun attitude to distract me from dwelling on the negative; especially when everything feels so overwhelming.
  5. He massages my limbs when the limberness fades or when there is pain.
  6. He provides logic and reasoning when I have none left to contribute.

Josh & Diana in the Black Swamp of South Carolina

I titled this entry “Caretaker = Unsung Hero” because of how pivotal that role is in our lives. I frankly feel that the caretaker doesn’t get enough recognition or due praise in our society. I also have felt that the definition of the caretaker role wasn’t as succinct as it should be. Caretakers don’t just work, they suffer. They don’t just operate in the background; they are the backdrop that makes everything around them beautiful. Caretakers take the lead, finding new options and energy when there was none left to be had.

Caretakers are the constant heroes 
of our everyday lives.

Wednesday, June 13, 2007

The Importance of Music

My most favorite song is “Through Your Hands” by John Hiatt as performed by Joan Baez. I was introduced to this song by a college roommate in 1994 and it has been a major comfort since; as well as an adopted theme song of my life.

Through Your Hands (by John Hiatt)

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."

Still you argue for an option, still you angle for your case
Like you wouldn't know a burning bush if it blew up in your face
Yeah, we scheme about the future and we dream about the past
When just a simple reaching out could build a bridge that lasts

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."

So 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

Sunday, May 27, 2007

Poetry Corner: Three Poems and a Turning Point

As I mentioned in earlier blogs, before, during and after I was diagnosed, I emotionally shut off for a time. I seemed to get easily overwhelmed, panicky, and then I would be totally unfeeling. 

For over seven months I couldn’t even write poetry. Then one month, during a particularly dry unfeeling state, the following three poems found their way out of me and onto paper. 

This was the first time that I’d felt like I was truly able to express myself in a long time. Also, as I read over them in the order they were written, I feel that you can see a healing process beginning to stir in the early stages.

They Say I Look Fine...

Something’s wrong, I can feel it.
My flesh is wasting and I am wide-awake.
Wide awake as I forget
Wide awake as my body sleeps
Wide awake as my vision fades
God help me! Where are my hands!

“Excuse me, please, where is my voice?”

Something’s wrong, I can feel it.
I feel spiders chasing butterflies inside my veins
I feel cold and hot at the same time
I feel my bladder screaming every five minutes
I feel that I am unfeeling
I am scared!

“Excuse me, where is my inner strength?”

Something’s wrong, I can feel it.
Doctors say there is no cure
Others say I look fine
Doctors say medication and “Can you walk from here to there?”
Others say this and that and you’ll be cured
But I can’t shake this one off!

“Where is my faith?”

Something’s wrong, I can feel it.
I shake all over, but no one sees it, yet.
I shake, I crumble, I cry, I ache
I shake wondering what it means
I shake yet methodically move
Somebody hold me!

My peace is lost

Something’s wrong,
can feel it.
Everything is shaking
Nothing is certain.

By Diana M. Bateman
2004 ©


Yesterday, Today, and Whenever

Day 1: The Storm Inside

A sudden chill
burns through my flesh
creeping allover and
butterflying me –
simultaneously heat radiates the chill and burns on.

Shrinking my sinews…
gray matter becomes grayer
as my bones clatter,
chattering unheeded demands.

Merging synaptic conversations into white noise –
it’s too loud,
so loud I feel it
taking away my “I think I can”,
as I putter backwards into me.
I am surrounded by life’s storm;
I am stuck inside a war of the elements; beyond repair.

Holding on to anything,
as long as it’s not moving, I wait.
hoping little damage is done –
praying for aide,
knowing there is none.

Day 16: Cessation
A sudden chill burns
B s
A d
C r
K a
W w
k A
c R
a D
b S
radiating departure. I am left
with an odd redress
and its heat leaves its chill on me…

Awakening my sinews from a
painful hibernation,
they rejoin the quick –
though the subliminal white noise
never leaves.

By Diana M. Bateman
2004 ©

Just Smile, Carry On

none of us are exactly the same
some hobble
some stand tall
others are obvious in capability
then there are those that you cannot tell,
but that you watch in curiosity

then, for some reason,
we compare ourselves;
letting the supposed reality frighten us
or render hope on apron strings

these comparisons become false expectations
causing needless anticipation
of the worst
or best
in the end it is all just another excuse
interrupting success…

graded on self perception of ability
the point is often missed.

By Diana M. Bateman
2005 ©