March 17, 2007 at 3:25 PM (AIDS, HIV) ()

Mine is good…sometimes too good It is a blessing… and a curse

It is March 17 th some long while ago.

I’m curled up in bed, with so much fear coursing around in my head that I’m having trouble forcing myself out of bed. It’s 11:30 am. I look up at my husband and cannot believe he’s not seeing what I’m seeing. The answer, the reason for the thrush, the fevers that never quite leave him, the infections…

“You know what this is! It can’t be anything else! It has to be…”

He was uncharacteristically cold that morning, and said flatly: “Get up, get dressed, and go to lunch with your aunt. I’m going to the doctor and she’ll get this all figured out.”

Once he saw I was moving he reverted to a more cheerful farewell as he went out the door…” Don’t worry. The doc’ll get this straightened out…” Lighter tone, big smile, the flash of those bluegreen eyes…and he’s out the door.

My aunt. My refuge and security. We had chain Mexican food as usual and I quietly dissected what I believed was happening, while my hands shook and the dread got larger…

My husband loved my aunt so. She opened her heart to him right away, something that confused him initially, but that he later grew to count on and appreciate. When she would show up, he usually engaged in cheerful chatter.

He smiled at us gently when we came in, but politely and quietly asked my aunt to leave…

“I have to speak with my wife alone…”

For him to have used the anachronistic possesive, this was serious.

When she left, the smile dissapeared from his face so quickly it was as if what I had just seen was a retouched photo.

His usual intensity returned briefly…”Look, I just got back here five minutes ago myself. Were you here before me? *Did you listen to the answering machine?*

“No,” I said, wondering what an answering machine would have to do with anything.

He was relieved. Hugely relieved. He took my hand and we walked over to the servicable old beige hideabed couch and sat down.

He advised me that he was HIV positive, and more than that, that he was in an intermediate stage, given an acronym that no one uses anymore, ARC or Aids Related Complex.

Inside my head, I began mourning that day. There was no cocktail, no protocol.

His hemophillia meant that I was certainly aware that it *might*be so…

I hated those phone calls. To my family. To his family. To our friends, who had had a tough enough job *being* my friends before that day, and even for them, it was now going to get a lot tougher.

I tried to make very clear to him that I wasn’t in the market to leave him. Intermittently he understood that, but the first four weeks were full of profound depression for him…atypical long silences in his thick blue bathrobe, becoming an “adult” about how to handle this altered future terribly terribly suddenly. And even when he didn’t speak, he would gesture and look around….and I felt it was a riff on “I figured hemophillia was enough of a trial for anybody. Guess not.”

We took breaks. Visited with Peter Pan. And Star Trek.

I had a week off as it happens so I had a week to absorb this before I would return to my job.

I would take years before trusting my co worker’s with this….so I would have to maintain radio silence at the job…

He and his mother went to their refuge that weekend — church.

I stayed home. And listened to the answering machine…

He was calling from the doctor’s office. Weeping. Profoundly shaken. “They’re putting me on AZT…They’re telling me all sorts of hellish things…”

All the smoke and mirrors that he and his brethern had recieved (and/or created in their own heads) from the conflicted inconclusive messages sent by the CDC about what “seroconvert” really meant, and what percentage of these guys were going to get infected and what percentage of them were actually going to progress to full blown AIDS and die…along with what his doctors had been ethically bound to have told him told him, but what they told him hadn’t yet taken hold of his head…all of that coalesced that day into his realization that he had not, in fact, missed that bullet.

Uninformed people also said a bunch of insanity that week…”Are you even going to be able to *live* with him anymore?”

And the last thing I remember about that first week, that twisted in my gut and *kept twisting…*

I returned to work when my time off was up, sat down at my desk and a friendly co worker stopped by:

“So, how was your vacation?”

I smiled broadly. “Marvelous,” I said. “Just great.”

Permalink 2 Comments

Memory again

March 17, 2007 at 2:19 PM (cancer) ()

It was also March 17th  some years later:

You have Hodgins Lymphoma…a type of cancer.  You walk in to some place that has so much psychic dissonance,  you can almost see the mental energy as a physical thing.

It’s a great hospital. One of the greatest in the country.  So, they are determinedly gentle to you.  Nice. Thoughtful. Considerate. Muted voices, comforting colors…

And underneath it all  something you will soon recognize. The sense of intense focus.  Concentration by absolutely everyone there on a single goal.

Life, and quality of life at that must be pursued, chased, tracked if it becomes elusive….and wrestled to the ground  with insane amounts of technology, medicine and determinaton and given back to the patient with joy….

What I called in my head The Fight That Must Get Fought.

Kindness could not hide the fact that they couldn’t even use my veins without help or my tissue might be burned by toxic chemo.

It did burn my skin the first time…(future doses, with the help of something called a “port”) did their job without that particular collateral damage.

And nausea…Zofran, a decent anti nausea med was two months away from becoming available.

Thirteen months of that…began on March 17th while my husband’s battle continued…

When my depression was acute years later, I tended to make unwise choices each March, an unconcious attempt to replace these things with better things….Law School [Hell no] Unwise Relationships [Hell No]

Once I saw what I was doing I realized that this is a day I can never make big choices…

Thank God for the jovial celebration of Irishness that always counters these memories…

Thank God for today’s sun.  Bright sky.  Puffy clouds.

I’ll enjoy them tomorow.  After I get past this mile marker of a day.

Permalink 2 Comments