Re: about the experience of chronic illness

[Guest guest]

Wow! I'm keeping this, its very well written and hits nail on the head,

thx!

Barbara wrote:

Crew, While

our NF2 may not be exactly invisible, I thought some of you might appreciaite

this article from the NY Times, as I did. Barbara

B.

Diseases That Stay Out of Sight

By

RICHARD M. COHEN

lean

at last. The third colonoscopy was a charm. Two bouts of colon cancer have

ended, the curtain fallen. The houselights are up. Nobody has noticed that

I am still on stage. A chronic illness remains. Multiple sclerosis, my

longtime companion, has resumed its lowly position in the hierarchy of

suffering.

Chronic illness is driven from the stage by the acute threat. Its plotline

is tedious because action is slow and the story rarely varies. Attention

spans are short, and the drama can take years to play out. The brush with

the white hot health crisis puts the chronic condition in its place. When

recovery from a life-threatening illness comes, that tired old standby

remains.

Turning tragedy to comedy is one option for coping. The morning I tried

to walk through a large mirror, thinking it was an entrance to a dining

room, entertained the boys behind the bakery counter. They knew nothing

of my legal blindness. I could write a guide to women's bathrooms I have

accidentally visited. Creeping, crawling illness takes me to the theater

of the absurd. Belly laughs sustain me.

There is a plodding quality to the slower struggle, one that frequently

lasts a lifetime. Chronic illness becomes prosaic, made clear by the contrast

with more exciting cancer, which wins in the ratings every time. Cancer

brings a sick glamour to its victim

Cancer survivors, and I am one, are wrapped in a cloak of tinsel that

wears thin soon enough. Life-threatening cancer tends to resolve itself.

The chronic condition is a journey without end. Many cancers today are

treatable and become chronic more than killer conditions, to be managed

and endured and survived.

Orphan afflictions become the long haul. They have little cachet but

afflict the many. These diseases are boring, not the stuff of movies and

plays, so usually they must rest outside the culture. Actresses succumb

to unidentified cancers regularly. The Big C is a proved box office winner.

Remember the last hot big-budget film about a man with crippling arthritis

or a woman with excruciating shingles? I don't.

One president endures M.S. in prime time and we learn little about the

disease. Talk of his shredding brain and a presidential blackout do not

ring true. No matter. M.S. is but a television device, meant to entertain.

And a public does not understand or appreciate the pace or pain of slow

sickness.

Many diseases compromise the ability to eat and digest, to walk and

speak and a host of other functions. These conditions remain private because

most of us tire of talking, and no one can see the truth of another person's

life.

My friend Don Gibson, a senior executive at the National Endowment for

the Humanities, left his job because of a digestive tract ailment, Crohn's

disease. Later, his open heart surgery became the front page story to friends

and acquaintances. No one has bothered to pay much attention to the Crohn's,

and everyone is quick to jump to conclusions. "It goes one of two ways,"

Don says. "If you appear weak, people think you are useless. If you are

functioning, they think nothing is wrong." Neither is the case.

"If more of us died," says my pal es, who also has M.S.,

"people might sit up and take notice." , a lawyer and political strategist,

gave up a career in the law because of complications of M.S. "The disease

is slowly stealing from me. You know. We just live with it."

That, we do. We are left to battle insurance companies that resist the

steady costs of endless care and the employers who quickly tire of our

bad days. We are compromised. We do not want to be wretched refuse. We

do not demand the concern of others. Benign neglect would be just fine.

We become a hidden population. We are invisible, except to our bosses

and colleagues and others we engage. Folks do not want to know. Those who

love us do but cannot intercede.

I have trouble walking. Don can barely eat. has memory problems.

We will live another day, but the routines that others take for granted

will challenge and occasionally conquer us. We can only acknowledge our

difficult journeys to ourselves in a whisper and move forward with humor

and grace.

[Guest guest]

once you have a disability of any kind you learn notto judge anyone,

how cruel. ive noticed i get a few stares if i lose my balance, some just

curious but others obviously snickering. it doesnt bother me now. once

had a guy laying on his car horn (i assume) to get around me, he ended

up driving over a median for whatever reason, the asshole was in a hurry,

but he slowed down to roll his window down and yell "bitch!" because i

did not hear his horn. i am total deaf. when all is said and done they

will have to account for their actions to whoever is in charge, at

least I hope .

ine wrote:

This

is very true. No one can see another's suffering.My

friend with MS has many stories, which she can laugh about. Once

she fell in the gutter while trying to get into her car. She broke

her ankle and heard people comments about her drinking too much.

She's a non drinker.Anyway,

I have printed this off for her .......... she and her husband will appreciate

it.ine from

OZ about the experience

of chronic illness

Crew, While

our NF2 may not be exactly invisible, I thought some of you might appreciaite

this article from the NY Times, as I did.

Diseases That Stay Out of Sight

By

RICHARD M. COHEN

[Guest guest]

yes ine you are so right once a guy made a display of openly staring at Mike & his 23 lb tumor in a restraunt Mike never got upset with people, But I well that's different when he stood staring I walked right in his face ask if he had a dam problem ... & my hubby was not far behind me ...Of course he said no mama no problem so I told him to move on ...but its not right ... like Mike had no right to be there ... but by God we do have a right ... hugs Lois

about the experience of chronic illness Crew, While our NF2 may not be exactly invisible, I thought some of you might appreciaite this article from the NY Times, as I did. Diseases That Stay Out of SightBy RICHARD M. COHEN

[Guest guest]

yes ine you are so right once a guy made a display of openly staring at Mike & his 23 lb tumor in a restraunt Mike never got upset with people, But I well that's different when he stood staring I walked right in his face ask if he had a dam problem ... & my hubby was not far behind me ...Of course he said no mama no problem so I told him to move on ...but its not right ... like Mike had no right to be there ... but by God we do have a right ... hugs Lois

about the experience of chronic illness Crew, While our NF2 may not be exactly invisible, I thought some of you might appreciaite this article from the NY Times, as I did. Diseases That Stay Out of SightBy RICHARD M. COHEN

[Guest guest]

yes ine you are so right once a guy made a display of openly staring at Mike & his 23 lb tumor in a restraunt Mike never got upset with people, But I well that's different when he stood staring I walked right in his face ask if he had a dam problem ... & my hubby was not far behind me ...Of course he said no mama no problem so I told him to move on ...but its not right ... like Mike had no right to be there ... but by God we do have a right ... hugs Lois

about the experience of chronic illness Crew, While our NF2 may not be exactly invisible, I thought some of you might appreciaite this article from the NY Times, as I did. Diseases That Stay Out of SightBy RICHARD M. COHEN