Dancing with MS

3:16pm: Latest Poem

“My Favorite Place” draft one, 10 Nov. 2009

 

[Started this in a creative writing workshop. Written in fice minutes. Modified it only for structure.]

 

My favorite place

Is cool like a refrigerator,

And as dry as a desert.

No damp, wool blanket would cover me,

And whispering brisk air carries

Excess, annoying heat away.

When cool enough, dry enough,

I can walk without my cane,

I can think with precision, clarity, and speed.

In my favorite place,

I am safe,

Needing not to justify

My needs, my methods, my limitations.

My favorite place is as comforting

As the embrace of soft arms,

And as undemanding as a purring cat on my lap.

11:07am: Ode to a Friend (Still with us)

I called Judie, this morning. We'd not talked since the washer and dryer were installed in my apartment.

Years ago, she ran the laundry service at a Lawrence laundry-mat. When the owners cancelled the service, she took the "best" customers and started her own service. She would wash, dry, fold, hang my clothes once a week. She also made Preston and me part of her family.

As I adjusted to being on my own, I decided to do my laundry. Preston and I  brought her flowers and a "Thank you" card. She and her husband, David, welcomed us. He took the photo I cropped for my profile picture.

Less than year it took to admit I couldn't do everything, so I called Judie, learning her husband had recently died. Not only did she agree to do my laundry, she did it gratis when I had money problems and after the problems were solved.

Our friendship deepened. Preston and I baked treats for her and her grandchild. She invited us to holiday celebrations. When I moved to a different apartment, Preston and I gave his car bed to her grandchild, and she helped me move. Now, she was picking up my laundry and returning it to me.

Even my move to Roeland Park didn't end her generosity. I brought my laundry to her on Fridays, when I picked up Preston, and got it on Sundays, when I returned him to his mother. Now, my roommate and I have the necessary equipment, and I need not call upon Judie.

I miss her, though--her graciousness, our conversations, her joy. I have thanked her in numerous ways, but they never seemed sufficient.
 

1:41pm: A Tale of Friendship, Cosmic Justice, and a Lesson Possibly Learned

Last night, I returned home after working a 13-hour day, to find a silver, Lexus coupe backed in to the space reserved for the disabled, such as I. I parked on the other side of the wide parking lot and hobbled to my apartment.

On my way, I observed the car didn't have a placard or a license plate indicating the driver had permission to park in the space. (I have noticed, in similar situations, the able-bodied driver backs in to hide the fact that the car doesn't belong in such a space.)

Tim, my roommate and best friend, arrived home from work at 11:30 PM. He called the police when he discovered my situation. The dispatched officer--a "well-put-together" Latina (I editorialize to indicate I might be disabled, but I'm not dead)--explained to us that she would "run the tags." If the owner is a tenant, she would go to the apartment to talk to the owner; if not, she would ticket the vehicle. We were okaywith these options.

Tim went outside to smoke and get unrelated information. There, he talk with another tenant who knew in which apartment the car's driver could be found. Talking through the apartment door, Tim learned the driver's first name and detected the presence of burnt cannabis. He shared this information with the police officer.

The officer convinced the driver to step outside, where she gave him a ticket for $130. When he complained, she pointed out to him she was doing him a favor, considering she could smell the result of his activities. He moved his car, and Tim moved my car. The man apologized to him, to which Tim said, "Apologize to my roommate, who has a debiliting disease and could have fallen and hurt himself."

What's the  lesson possibly learned? If one breaks a law in private, don't compound the offense by breaking a law in public.
 

6:39am: Another MS metaphor
Keeping moving while still broken. On a '70's reality show (_That's Incredible_ or _Real People_), an inventor demonstrated his modifications to a car that allowed a tire to be changed while the vehicle is still in motion. Yep. Legs prove unreliable, use a wheelchair, for example. (Start Gloria Gaynor music :-) )

1:24pm: I'm still here! (Thank you, Sondheim)
A great deal has been going on, but for now I want to share a poem.

“I Tire of the Needle,” draft two, 2 Sept. 2009

 

 

I tire of the needle,

and not because it hurts.

I tire of the needle,

and not because of cost.

I tire of the needle,

and not because I spurn routine.

I tire of the needle,

who greets me every day.

I tire of the needle,

whose point is not so present of that of other pricks.

It need not deliver a sugar high,

or keep my heart from stopping.

It need but only stop--not stop, but slow--

intrusion of the subtle and unseen.

I tire of the needle--

it’s daily reminder of uncertainty.

12:13pm: My brain on MS, re: previous posting
According to the dictionary (Webster's), an anniversary is the annual recurrence of the date of an event.

It follows, then, that this year is the ninth anniversary of my diagnosis of MS. Today, then, is the 39th anniversary of the first moon landing, which took place 40 years ago.

This said, MS kicked my ass much of the weekend.

9:10am: Math Question about Tracking Time
This summer is the tenth anniversary of my diagnosis of multiple sclerosis. How long ago did the diagnosis actually take place?

The question applies to other anniversaries: the 40th for the launch of Apollo 11, the 100th for the founding of the NAACP, and the 400th for Galileo turning his telescope heavenwards.

3:14pm: My Equation of Managing MS
(This afternoon, I’m at work, hiding from the heat--98 degrees, 108 degree heat index. Healthy people are discouraged from spending time outside--no way am I risking things.)

 

Pragmatism=Determination+Awareness-Confidence-Bliss

 

It is not sadness that leads me to this conclusion. I am not morose or gloomy. At times, my state, “Like to the lark at break of day arising / From sullen earth, sings hymns at heaven's gate” (too many syllables in first line—weird), but, like the lark, my state must return to earth. As “Crash” told “Nuke,” who wanted to just enjoy the “moment,” the moment’s over.

 

(My roommate recently finished the second draft of a short screenplay--a well-written one, but his first. The next day, he described his emotional state: spiking and plummeting, repeat. Yeah. I offered advice, based on my years of writing experience: get laid, or start working on the next script.)

 

Keep moving. Not because I’m running away, but because I don’t have the resources to survive in a stopping place. 

Awareness is the stylobate, determination the plinth of the pillar of Pragmatism. Confidence and bliss are the cloying children of Hope, cringing in a corner of Pandora ’s Box. Mixed metaphor aside, the latter do not belong with the former.

3:51pm: Being out of the loop, but still . . .
learning something new every day.

Frasier Robinson, Michelle Obama'a father, was diagnosed, in his thirties, with MS.

10:27am: Change in plans
(The userpic photo is not of A.J.) 

After my son's mother and I talked, I've decided to not tell him, right away. Her concern is for her sister--pregnant and caring for three children. How will I handle it when Preston asks about A.J.? "He's not well. He's declining." Some of you may realize I am using the strategy from the "Mom is stuck on the roof" joke. As with any effective joke, it has truth in it.

Preston's mother will come by to get A.J., to bury him next Citrine (another lost "friend") in Preston's godfather's backyard.

For now, I've not slept much, and I've more crying to do.

4:09pm: Not about MS, not now

 

 

Yes, I’ve been away, dropping in infrequently, and without much news. I should, then, write about how my move has improved things; or, about the patience, concern, and help of my roommate, Tim; or, about the yearly return of the catch-22 of heat and movement. Not today. Not now.

I want to write about the loss of a “friend,” one I had known for 15 years. Over time, he became my son’s “friend,” and everyone who met him adored him. In 1994, though, his need for a friend was so great we made him a part of lives.

 

We--I and the woman I came to love, would marry, and who would divorce me—decided to adopt a cat. I had a cat. She had a cat. We would have a cat.

 

At the Manhattan, Kansas shelter, all but one caged cat clamored for attention. This Maine Coon, with jet-black hair shot through with golden streaks, sat against the cage door looking sidelong at us. I see him, now, reminding me of the punch-line of my favorite Jewish grandmother joke, the one about the number needed to insert an incandescent lamp. “None. I’ll just sit here in the dark. You go on with your lives. You’re young. I’m old. I’ll die soon. Go. Go.”

 

We went and with him in our arms. “A.J.” we named him (Augustus John, the English painter, for no reason but his was the first name to come to mind). He acted as if he couldn’t believe his good fortune.

 

Unassuming, quiet, undemanding. One night, I closed the bedroom window. The next morning, we found our new friend trapped between the window and the screen. He never complained.

 

We watched this Maine Coon scoop food into his paw and lift it to his mouth. He tried to eat shadows. He came for attention but never cried for it.

 

Changes upset him, whether it was my lover’s intense spring cleaning, or our moving preparations. We had learned he had been caught in a tuna trap. His docility indicated he had been someone’s pet and, perhaps, abandoned. Manhattan--college town—irresponsible, selfish students. Yeah, abandoned. We calmed and comforted him without hesitation.

 

During the divorce process (2001 to 2002), my soon-to-be ex-wife offered to find homes for the cats--hers and ours. I declined her offer. Our “friends” and our son didn’t deserve such loss.

 

As my struggles (“managing” my MS, living on my own, trying to finish a doctorate) worsened, I briefly considered getting rid of the cats. My son, who had recently begun talking, said something about “my cats.” No way would I disrupt this relationship. No way in hell.

 

The recent move to Roeland Park proved difficult for him. We were in an apartment that recently housed four people, two big dogs, two cats, and a ferret. The persistent odors I could only tolerate must have driven A.J. nuts! He often shat on the carpet. He yowled for no reason we could discern. What did he think? “Where are the dogs? What is that animal I can smell but not see?”

 

We moved again, to a renovated apartment--new carpets, “fresh” paint, and no animal odors. A.J. calmed, but . . . His age showed in his crooked gait, his weight loss, his dull, bodiless fur.

 

My son and I doted on A.J. Strokes, gentle words, and lap time. We talked about my son’s trip to Florida, and he gave voice to the possibility that A.J. might die while he is gone. Yeah.

 

My roommate called me at work, letting me know he’d found A.J. had died. Not a surprise. A.J. had been declining, sharply, during the past three days.

 

Okay, all right, he was just a cat. The pragmatic part of me knows this and will not share  my sudden tears. For, I will miss him. And, now, I need to tell my son our friend is gone--without being able to hold him as he cries.

12:34pm: Again, Subtle and Subversive

 

My nine-year old son left for Florida, this past Saturday. I’d arranged with my roommate to take me to the airport (MCI), where we’d meet my son and his mother. Friday evening, after his mother picked up Preston, I crashed, sleeping for 13 hours.

 

When I awoke, though, I discovered my body had shut down, leaving me with resources enough to get to the bathroom and the living room sofa, where I stretched out and used the TV to occupy a trapped mind. I didn’t get to the airport.

 

Perhaps not a surprise. I have compared myself to an inefficient rechargeable battery--not recharging fully, not recharging quickly. During the previous week-and-a-half, I provided Preston’s primary care, I moved to a new apartment, and I prepared for and started teaching two summer courses. Lots of physical activity, lots of heat and humidity exposure.

 

Not so subtle, not so surprising, after all.

4:39pm: Found poetry--mine
The sleeting rain has turned to damp snow. So, I'm sorting through belongings not seen for some time. I find a poetry draft, undated, on a stray half-sheet. I've tweaked the scansion, but that's all.

I didn't know the light had gone.
I stumbled about, bumping in to chairs,
And didn't curse the pain.

I didn't know the light had gone.
The peeking glimpses seemed fair to me,
And didn't think to curse the shame.

2:07pm: I am, today, Eleanor Roosevelt
First, to my friends who shared well-wishes and sympathy, my thanks and gratitude. *hugs* and *smiles*

E.R. is an idol of mine for many reasons. She wrote, "We must do the thing we think we cannot do." I hold her advice dear and recite it as a mantra.

The cloudy, humid weather, the five or so extra pounds I've allowed to creep on, and financial woes are handicapping weights that I am bearing like a favored race horse. The air pressure pushes me down. the weight causes spinal compression, and money worries leave me feeling impotent. But, things could be worse, and, since they are not, I will move to make the best of things.

I work, full-time. I have health insurance. My son brings me joy.

My friends are in my thoughts and heart, providing lift, reminding me I am not alone.

1:53pm: Making sense of things

I track my health, daily. So, I've been wondering why I've struggled with sleep disruption, struggles with focus and motivation, and physical weakness. The first culprit would usually be MS, right? If only . . .

When I wake during the night, I'm experiencing tightening of my neck and back muscles. My first thoughts are about money. "How will I pay the [pick one] bill?", "Will I be evicted?" or, "What can I sell for gas money?"

Tuesday, I awoke at 3:30. Choosing action over apathy, I got dressed and went to the supermarket to buy catfood. I wrote a check, knowing it won't be processed until Friday, pay day. Having acted, I was able to return to sleep. But, geez . . .

Yes, I'm moving to be closer to work, and moving in with a friend in order to share expenses. How will I pay for the move, though? Will I be able to get to Sprink Break? Worry, worry, worry.

Yes, things will begin to improve for me, come May, but I need to get to May.

Thank you for letting me pour forth.
 

5:26pm: “My Friend, the Wall,” Draft Three, 3/3/2009

My friend, the wall,

Or any vertical surface, then,

Strong enough to support my head,

While my hands retrieve my shorts, my slacks,

My fingers shove in my shirt, close up my fly.

 

I have other friends,

Count my cane among them.

This four-footed friend can not help,

Though, when I need two hands.

 

My kitchen counter,

Like my friend, the wall, then,

Provides the edge I need--

My hands prepare my meals, and, then, wash my dishes.

 

I have other friends:

They let me lean against them,

When my legs, my heart, my hope

Can not, at times, sustain me.

 

Could I’ve ever stood alone, then?

I fell, and failed, the times I tried.

4:38pm: Poetry, again

(I am holding on but have little extra strength to reach out beyond my priorities.)

“My Friend, the Wall,” Draft One, 2/24/2009

 

My friend, the wall,

Or any vertical surface

Stable enough to support my head,

While my hands retrieve my shorts and slacks,

My fingers shove in my shirt, close up my fly.

 

I have other friends,

Count my cane among them.

This four-footed friend can not help,

Though, when I need two hands.

 

My kitchen counter, then,

Provides the edge I need

To wash my dishes, prepare my meals.

 

I have other friends,

Who let me lean against them,

When my legs, my heart, my hope

Can not, at times, sustain me.

 

Could I ever stand alone?

I fell, and failed, the times I tried.

5:23pm: Fear and MS

Worry, if not fear, woke me before 3:00. I will be moving, around the end of May, from Lawrence, Kansas, to Roeland Park, Kansas. Moving, to another city for the first time in 15 years. Wow! Still, I awoke, afraid.

 

How will I pay for this? The chief reason for the move is to improve my financial situation, but I’ll need to find resources to do so.

 

How will I accomplish this task? Growing up an Air Force brat, I moved often, and was skilled at it. Now, I am unable to do much of the "heavy lifting," unable to lead, by example, the people who will help me.

 

I did get back to sleep after almost two hours. And, I will find answers to these questions, and this task will be accomplished.

 

I experienced an emotional reaction to the future.

1:02pm: Making Lemonade

Not one to wallow--for long, I want to provide balance to my previous entry.

 

My full-time position is that of a college instructor. This semester, I teach Composition I and II, and, for the first time, Introduction to Literature. I excel as a teacher, providing content-specific instruction, as well as instruction for life-long learning and inspiration.

 

A Comp. I student from the fall had to withdraw because of personal problems. She had re-enrolled, telling me, “I couldn’t have any other instructor but you.” Another student of mine has told members of the administration that I am one of the two “best instructors” at the school.

 

So, to quote Bill Murray’s Caddy Shack character, “I got that goin’ for me.”

4:29pm: It's been a long time coming

(I am carving out space to write a post, which I’ve written on the fly over the past two days.)

 

I miss the things I lose when I am not paying attention. I feel like the unaware college freshman, who arrives to class early, puts down his things, and leaves for the restroom. He is surprised, when he returns, to find his things gone. MS does this to me.

 

What I’ve lost are the “extras”—extra energy, extra time, extra mental capacity.

 

How does the loss reveal itself? After I’ve met my primary responsibilities--work, caring for myself, caring for my son--I have little left for friends, for writing, for the job search.

 

Yes, I am employed full-time, but my net income is no longer sufficient. In the past, I’d find part-time work, or send out job apps. Now, I don’t have the ”extra” to do so.

8:04am: I dreamed of walking--

of walking with ease and confidence.

I'd walked half a block before I realized I didn't have my cane. I called back to my son to catch up.

Reality began to intrude when I turned a corner. My bladder began hinting about its needs. As I looked down the city street, I determined which store might have a restroom. I realized, suddenly, how far off was my destination.

Just as doubt creeped in, I awoke, but for a time I felt whole, alive..
 

1:30pm: I didn't weep until this morning
While listening to President-Elect Obama's wonderful speech, I shed a few tears. It was this morning, though:

My son's mother called me so I could talk with our son--today is his ninth birthday. Before I could wish him a "Happy Birthday," he shouted with joy, "Obama is the President! Obama is the President!" I lost it.

1:28pm: Exercised my franchise

I voted by advance ballot about two weeks ago.

NPR did a feature on a man who has no movement below his shoulders who made the effort needed to vote.

So, what are you waiting for? ;-)
 

2:24pm: I'd much rather be taking a nap

Your result for Howard Gardner's Eight Types of Intelligence Test...

Spatial

Take Howard Gardner's Eight Types of Intelligence Test at HelloQuizzy

1:26pm: When will I start swimming to shore?
Tough to tread water when the chop is turning to swells. (What an awkwardly expressed metaphor.)

Finally read _Speed Bumps_ and did so in one day, so taken was I with Garr's memoir.

Thanks to those of you who replied to my previous post. Hope everyone is well and happy.

Off to grade essays.