On Wednesday, August 20, Stephanie Tubbs Jones (Democratic Representative from Ohio) suffered a burst aneurysm while driving in Cleveland Heights, Ohio.

She was rushed to the hospital where doctors said that the aneurysm was located in “an inaccessible part of her brain” and she had “very limited brain activity.”

She was pronounced dead at 6:12 pm.  She was 58 years old.

One summer afternoon about 4 years ago, I got a phone call at work.

It was my husband. 

“They told me I have to go see my doctor right away- it’s urgent.”  His voice took on an unfamiliar quaver.

“Will you come with me?”

I left work and met him at our General Practitioner’s office.

My husband has had migraine headaches off and on since his teenage years.  After a recent migraine, his doctor had suggested he have MRI images made of his brain to see if they might reveal a cause.  The staff at the MRI center looked at the images and sent him directly back to his doctor with a note.

They had seen something that demanded urgent attention.  “An anomaly,” the note said.

Our general practitioner calmed us as best he could, explained the note, and immediately made an appointment with a neurosurgeon.

The neurosurgeon examined the images and told us it looked as though my husband’s ‘anomaly’ might be an unexploded berry aneurysm in the center of his brain.

We were about to learn a great deal- about the human brain, about aneurysms and about ourselves.

An aneurysm is a weak spot in the wall of an artery that, over the course of years, expands into a  flabby balloon.  It’s walls become so thin that they can rupture, smothering nearby tissues in blood.  Aneurysms can occur in many parts of the body, but in cases like my husband’s- and Rep. Tubbs Jones’- they are located in the brain.

It is unlikely that Stephanie Tubbs Jones or any of her family knew that she had an aneurysm.  Although up to 2%-6% of Americans have aneurysms, most go undetected.  Some, like my husband’s, become apparent during medical examinations for other ailments. (His was completely unrelated to the headaches.)

But unfortunately, the most common way aneurysms announce themselves is by rupturing, causing catastrophic bleeding into the brain.  With no symptoms and no warning- other than perhaps a severe headache- a previously healthy adult can collapse and die within minutes.

40% of patients die within hours of the rupture; 30% within days.  Of those that survive, half will succumb to related complications within six months; patients who survive this period will often be profoundly injured and unable to resume their previous lives.

The neurologist told us that my husband’s imagery indicated a berry aneurysm- the most common kind- located squarely between the two hemispheres of his brain.  I asked him what would happen if the aneurysm were to burst and my husband somehow survived.

“He would be in pretty bad shape,” the neurosurgeon replied.  He didn’t elaborate, but his expression told me what I had feared: he would be better off dead.

There are about 27,000 ruptured aneurysms reported each year in the United States.  They are known to occur between the ages of 30-60, but the risk seems to increase after age 50.  Although some cases are linked to substance abuse, head trauma or kidney disease, there is really no known cause for most cerebral aneurysms.

Some are congenital.  We were advised to contact my husband’s siblings and ask them to be examined.

There is also no known prevention.  There is no drug or health regimen that will prevent an aneurysm from forming.  Like all other people, those diagnosed with aneurysms are advised to remain physically fit and live sensibly, but this does nothing to alter the situation or affect the behavior of the aneurysm- it can only offer some marginal hope of survival in the event of a rupture.

Treatment of exsiting aneurysms is surgical- ‘clipping’ or ‘coiling’ them.  In the clipping procedure, the aneurysm is clipped shut, diverting the blood flow to stronger, healthier tissues that are less likely to rupture. 

Yes, this does mean brain surgery.

‘Coiling’ is slightly less invasive.  A catheter is inserted into the groin, and by this passage tiny platinum coils are moved through the body to fill the aneurysm, effectively shutting it off from the blood supply.

Both procedures have been shown to be effective, but carry risks similar to the aneurysm itself: postoperative bleeding and stroke.

In my husband’s case, we were advised that since the aneurysm was still quite small and appeared ’stable’ the risks of surgery outweighed the benefits.  We were told to monitor the condition of the aneurysm with regular MRI scans.  If it apeared to grow the treatment options would be reassessed.

We reported for a new scan the next year, as suggested.

We tried to make an event of it.  I took a day off work.  We planned to have lunch at a favorite cafe afterward.  But as I sat in the waiting room,  flipping through stale magazines, I didn’t feel very festive.

When my husband emerged from the imaging room, we went directly to the neurosurgeon to examine the pictures.

He showed us that the ‘anomaly’ had not changed in any way.  It was still small, still stable.  Having examined the new images, he was now willing to say that there was a 50% chance that the ‘anomaly’ was not an aneurysm, but perhaps a harmless, idiosyncratic twist in an artery.  If it was an aneurysm, but stayed this small, there was a .01% chance that it would rupture.  If it grew, that chance would increase.

We now live in a 50% world.  There is a 50% chance that my husband has an aneurysm in his brain.  There is a 50% chance that he does not.  There is also the chance that, if it is an aneurysm, and continues to grow, it will rupture in the next 10-15 years.

When I first heard about Representative Tubbs Jones, I thought of her family.  I tried to imagine the blasted moonscape of emotions must be inhabiting–shock, disbelief, anger, grief. I wondered if they would have preferred to know about her on Tuesday what we have known about my husband since 2004.  Would it have helped them?

Has it helped us?  In some ways, yes.  That year we sat down together and reassessed my husband’s health insurance.  We dropped some coverage in order to pick up more catastrophic care.  We talked about ‘heroic measures.’  We discussed his life insurance policy.

We also developed a sense of humor.  After that first visit to the neurosurgeon, we returned home and sat in our study, stunned.

It was allergy season.  My husband sniffled, struggled, then gave a violent sneeze.

“A–CHOO!!!”

He froze and stared at me, horrified.

“Well,” I said, “There go the piano lessons.”

“I have a kink in my brain,” he jokes now.  “Who knew?”

I have learned from my husband that optimism is the better part of valor.  He has siezed on the positive 50%- that it’s not an aneurysm, or that it will never rupture.

And even if it does, he says, “by that time they’ll have learned a lot more and maybe they can save me.”

With his attitude and with the passage of time, we have managed to move beyond that other, more frightening 50%.

“It’s not something I think about anymore,” he says now.  “I just live my life.”

I wonder if that is the attitude Rep. Tubbs Jones would have taken.  Having examined her accomplishments, I think it might have been; her career is a long, impressive list of “firsts”:

First black and first woman to be Cuyahoga County Prosecutor

First woman to sit on the Common Pleas Bench in Ohio

First female black Representative from Ohio

First black woman appointed to the House Ways and Means Committee

It sounds as though she was too busy moving forward to remain stuck in fear.  It sounds as if she, too, would sieze on that positive 50% and keep hurrying toward the next goal, and the next.

Maybe that’s not a bad way to live.

My candle burns at both ends

It will not last the night;

But ah, my foes

And oh, my friends–

It gives a lovely light!

Edna St. Vincent Millay

References

Ohio Rep. Tubbs Jones dies after aneurysm/CNN

CNN bio of Representative Stephanie Tubbs Jones

Cleveland Clinic: Rep. Stephanie Tubbs Jones has died/WKYC.com

USC Neurosurgery: Cerebral or Brain Aneurysm 

National Institute of Neurological Disorders and Stroke: Cerebral Aneurysm Fact Sheet

Cerebral AneurysmAKA: Intracranial Aneurysm, Berry Aneurysm

Cross-posted at Deafening Silence.