Kitten fatigue, a Craniversary, and a wish to walk without pain
From Our Editor...
You can really tell that Fall is starting to move in, as the mornings have been cooler here in North Dakota. I have to tell you though, that I am really looking forward, to the first hard frost, not so that my joints receive a little reprieve, but also because of the fact, that this has been the absolute worst year for wasps in our area. They just seem to be everywhere.
We have got a great lineup this time. All of our writers, photographers and artists have been featured in past issues. If this is something you want to become a part of, please feel free to email me at firstname.lastname@example.org
CJ Poetry Editor
In this Issue:
The Next Step (Short story Christina Ames)
Forever (Poem with photograph by Mel Isherwood)
Birds in the Birch (Collage and painting by Jennifer Taft)
Mr. & Misanthropy (Poem with photograph by Kevin J. Barron)
The Grey Badge of Courage (Poem with photograph by Brenda Kleinsasser)
Christina Ames has lived with RA for 26 years, and has lately begun blogging about her experiences with the disease and life in general. Her family and friends bring her the greatest joy, and she enjoys reading, cooking and gardening as hobbies.
She has recently become an advocate for the Arthritis Foundation in their grassroots program and is looking forward to doing more with this. If you would like to see more of Christine’s writings, you can check out her blog at http://capturingmyjoy.blogspot.com/
The Next Step
by Christina Ames
It’s a well-known fact in my family that from the time she was a baby, my daughter has been a daredevil. Not on purpose, mind you. It just seems to be an integral part of her genetic makeup, like the beautiful curly reddish hair she’s blessed with. It didn’t start gradually either. She arrived in this world kicking and screaming, and hasn’t stopped yet. A for instance: when she was learning to navigate the stairs, she wanted no part of the conventional ways most children learn, sitting on their rump or holding on a railing. She had to go down the exact middle of the steps, not holding anyone’s hand and walking perfectly straight.
I believe she has the youngest child desire to compete with the older, even though both of them have had nothing but attention and love since before birth. She’s tried everything, completely willingly, that her brother never wanted to do: swimming, T-ball, riding. She has a fearless, often heedless, nature and I am fairly certain it accounts for every gray hair I have.
Yet for all her impulsiveness, I see something that I no longer have: that glorious freedom of movement, where you don’t even need to consider it, you just get up and go. If she wants to walk to a friend’s house, she simply does it, unlike me who must first decide if I feel well enough, then think if I can take the time to recover so I can do the things that need to be accomplished that day.
From the time three years ago when I began this period of active flaring, I’ve had first my legs and now my feet affected. That’s how I knew there was a problem; I literally had to lift my legs into the car. Some days, the bad days, I wish I could unscrew my hips and leave them on a shelf to throb painfully without me. I practically weep at the top of a staircase, and listen as my knees pop like breakfast cereal as I descend a single step at a time, a death grip on the railing. My steps are as halting and shuffling as a much older person.
It took me by surprise, this latest development. The mid-forty-something me couldn’t possibly walk with a limp! I’d had achy knees at the onset of my diagnosis, but this…this was a whole new ballgame and I didn’t know the rules. And why? Why now, when I was trying to be healthier, go for walks and lose some weight?
I’m a firm believer that you are never given more than you can handle. In moments of wry amusement, I joke that I must be able to handle it all! But I’m sad and upset that I know how many steps it is to the bathroom from my bed. It’s ten. Steps downstairs? Eleven, not including the landings at the top and bottom of the staircase. I know because on those awful days when I am not as mobile, I have counted them as I coax myself across the floor, silently urging my feet to take just one more step, stopping in the middle and telling my swollen knees we are halfway to our goal.
Lately, I’ve noticed my right ankle to be a bit puffy. So I went and tried some support braces, little bits of straps and Velcro that I hope will help. It’s an annoyance to make me feel limited, though it does help sometimes. Another thing to remind me of this nasty disease: a cane. I haven’t used it yet, although I know it will come, sooner rather than later. Folks in the UK, I’ve noticed, call them sticks. So when I do eventually need it, I’d like to think I’m really whacking my RD over its ugly head, because I’m still moving in spite of it.
I’m extremely thankful that I’m still able to walk, don’t misunderstand! I’m grateful for all the years I’ve had without these aids and for all the activities I am still able to do, and I know there are many of my fellow sufferers who require a wheelchair or are bedbound. But I wouldn’t be human if I didn’t wish that I could walk without pain, without pausing to carefully scan the ground for obstacles that could cause a fall and I fervently wish my kids weren’t aware that I need the ramp instead of being simply able to step off a curb.
Those are my bad day thoughts, and they are few. I am an optimistic person, so I guide my thoughts onto what I can do. I go out and walk when I can. I stand for what I know is too long when I feel okay, even though I know I’ll pay for it later. And though it’s still in the closet, you can count on that cane to be completely decorated, personalized and dazzlingly bejeweled. My daughter will be sure to see to that herself, arty person that she it, and she’ll do it for me so that I can move more freely and without fear.
I realize that I’ll always need to worry about the steps my feet take. I will have to walk steady, thinking ahead to the next one and making sure it’s on stable ground. I’ve come to terms that I won’t ever again be able to dash down a flight of stairs impetuously, like my darling daughter. No worries. I’ll still move forward, albeit slower. Forward to as mobile as I can be, forward to new meds and treatments, hopefully forward to a cure. Not as a daredevil, but as a true warrior who endures and triumphs.
Mel Isherwood was diagnosed with Fibromyalgia in September of 2012. These are her own words about this particular verse:
“This verse was written during my huge initial flare; I was in and out of hospital and feeling quite glum grieving me. I understand bereavement and grief to fortunately understand my emotions and the process I had to go through to adapt to change. It’s been a journey, and now Fibro, well it’s one of those friends that are actually a flipping nuisance but around anyway. Fibro has taught me to slow my life down; every cloud does have a silver lining.”
PHOTO CREDIT: Kitten Fatigue by heidelscornderblogspot.com
To get up takes forever
To wash takes forever
To think takes forever
To breathe takes forever
My day takes forever
My life taken forever
My world gone forever
My heart broken forever
So what can I do
What can I say
To make this pain
Just go straight away
Now Fibromyalgia is not life limiting
My mortality not inhibiting
But it takes away much of your life
My tears stream with daily strife
And the more upset I feel
The pain becomes much more real
A vicious nasty circle
Whilst praying for a miracle
I try to keep up beat
Though I won’t be dancing in the street
It's hard when life is so still
Revolving round numerous pill
I cannot remember feeling so low
My movements ever so slow
The ignorance is a pain
Not to mention real pain over again
So I'll try to pick up this verse
Meant to be offload not make me worse
To find a better positive way
To get through each and every day
To take just one day at a time
Write verses that do so rhyme
For tomorrows another day
Hoping the pain has gone away
Today I'm not so strong
My energy gone, so wrong
Have so much I need to do
A list large to get through
Those who understand
In this and other lands
That today I may feel low
Although I try not to show
And tomorrow mood can change
I could take pleasure watching rain
My mind lifted dancing with the wind
My heart wanting to just sing
What have I got to live for
My grandchildren I adore
My family, I am so blessed
And friends always welcome guests
The priorities in life now changed
Care plans being arranged
Need my energy to survive the day
Living to minimal resource every day
In a way I grieve Mel, that's me
The way that I used to be
Quick, sharp, life close to edge
Helping everyone, that was my pledge
And now me I cannot serve
No energy in reserve
Trying to keep uplifted, with a smile
Aware of pain all the while
This verse seems somewhat up-down
That's how Fybromyalgia goes round
Cons me in thinking better ill get
Do a little more, then find pain filled regret
10th September 2012
Jennifer Taft has lived with RA for over 6 years. She has always loved art and finds it more challenging with her hands, but it also pushes her to continue to be creative and find new ways to create new art.
This particular piece, is a combination of collage and painting, as she describes, as a fun experiment with paper. She was inspired by the arthritic impressionist and painter, who lived with RA, Pierre-Auguste Renoir.
Birds in the Birch: Collage and painting by Jennifer Taft
Kevin J. Barron has lived with RA and OA since 1999. He writes “bad” poetry in his spare time. His hobbies are reading and writing. He says if he were to have a vanity license plate for his 2004 Nissan clown car, it would read: “ Altruistic misanthrope.”
PHOTO CREDIT: “What dreams may come” by Kevin J. Barron
Mr. & Misanthropy
For the most part people creep me out
Though it’s really not their fault
The secrets that their eyes betray
Are locked away in that vault
Maybe I’m just uncomfortable
With strangers as a whole
The problem seems to increase with age
The years do take their toll
Engaging I’m told, that’s what I am
I make them feel at ease
Conversations light and airy
But not too personal please
Still they insist on opening up
I listen with endless patience
Problems, doubts, so insecure
Too much information
Judgmental? Yes, I surely can be
Yet how can I avoid it
When everyone tells me of how their life
Has gone straight into the toilet
I’m not judging the singular person
That would be unfair
It’s just the stuff that people go through
Makes the world so hard to bear
Reading people has always been easy
It takes little more than a look
Though their story can be quite interesting
I’d rather read a book
At times I’ve said how I hate people
That’s only but partially true
Helping people is in my nature
An altruist through & through
A Dr. Doolittle personality
I am the push me pull you
Sarcastically barking my jaded perspective
Still that does not fool you
You know me well, weird but harmless
You may even I think I’m a mystery
But always there if ever you need me
It’s all a part of our history
Often too quiet, content to listen
I’m not one to scream & shout
Rest assured as you are my friend
YOU DO NOT CREEP ME OUT
KEVIN J. BARRON
July 23, 2008
Not only have I lived with RA for over twenty-two years now, but I most recently celebrated, five-years of being a brain tumor survivor, or as my friends in the brain tumor community refer to as a Craniversary.
I wrote this poem along with a special project, I created to reflect over the past five years. I have received many gifts along this journey. Writing became a big part of my life after brain surgery. I had not done any sort of writing prior, as I suddenly became creative.
My blog is comprised of tales told by a Golden Retriever, named Trevor, The Tell Tale Dog. Here is the link. I hope you enjoy it. http://brendasbrainstorm.blogspot.com/
PHOTO CREDIT: “Display of Celebration” by Brenda Kleinsasser
The Grey Badge of Courage
2 burr holes remain
as a constant reminder...
of the day
I became a brain tumor survivor.
My skull was drilled open
it’s been almost 5 years now...
with everything that’s happened,
all I can say is WOW!
My Grey Badge of Courage
has brought me some tears...
not really knowing it had been lurking
for all of those years.
20 years they said at least
that “Mini” was living...
rent free as a beast!
She may be gone, but
her memory remains...
my Grey Badge of Courage,
hurts when it rains...