Our Stories, Our Voices

Why This Website? Our own health care stories matter

Our own health care  stories matter. 

I am stunningly lucky to be alive. I suffered a stroke in January 2014 but my type of stroke has an 80 to 90% recovery rate. I had incredible care from excellent health care professionals. I had robust health insurance through Medicare. I have strong and close networks of friends and colleagues who shouldered me through.  And, I know the health care system.  Many do not have such gifts for support.  And, so this website.

I want this website to be a platform for stories that illuminate the rules, gaps, errors, costs and inadequacies too many face—from families and patients to health care professionals and all who struggle on journeys without maps. Points of information will include insights, suggestions, tools and resources. We must showcase our personally textured portraits so they will be well understood.

As more attempts are made to dismantle the Affordable Care Act our personal stories can provide a face and voice to clarify deep systemic problems that must not be ignored.

Many will dismiss this platform as “just individual stories” But as three health care journalists from the Wall St. Journal, New York Times and Money magazine once told a health care executives’ conference: “All we have are anecdotes. But, in the absence of data from you to the contrary, the accumulation of these anecdotes becomes fact.”

Without the accumulation of our voices we will remain victims of the deepest special interest pockets and the latest public policy buzzwords.

I realized when my son died in 1991: “When the worst thing that can happen to you has happened, it changes how you calculate risk.”  Creating this platform is worth the  risk.

I can’t do much but I can provide a platform and I can write.  As someone once told me:  “Fate is the cards you are dealt. Free will is how you play your hand.” I write to play my hand.

You have the opportunity as well.

Kathleen O’Connor, ©December, 2014

Posted in Uncategorized

Theo’s Story–Medical Bankruptcy

Theo was the manager of a large private estate where he worked for 17 years. His employer deducted income tax and social security from his paycheck. He did not, however, pay for Theo’s health insurance. Theo had looked at health insurance policies, the policies were too expensive. In 2005 Theo went to the hospital because he thought he had something stuck in his throat. The hospital ran some tests only to discover that he had had a series of small heart attacks and needed an angioplasty to insert a stent to clear the blockage in his heart. The angioplasty was $55,000.

Theo was too young to retire and needed to work to pay off part of the angioplasty bill. He had panic attacks because he did not have the money to pay his medical bills. He wanted health care insurance but now with a pre-existing condition he was unable to afford any health insurance he could get.

His employer did not want him working while he was taking the panic attack medications and terminated Theo. Because Washington State law declares it illegal to fire someone if they take medications, Theo hired an attorney. He received a small settlement.

Two years later Theo had a massive heart attack in 2007, but he still had no health insurance because of his pre-existing condition. This time his hospital bill came to $63,000. Theo found himself nearly bankrupt again from his medical costs.

He could not afford individual health insurance. He had some coverage and assistance through his partner Pete, but it was limited. They were able to have benefits for both of them even before same sex marriage because some employers actually permitted it. While he had to pay for his coverage he was able to get health insurance at the employee’s discount for $530 per month.

When his partner’s school closed in Seattle, however, they both lost their health insurance.   At $900 plus per month for health insurance because of his pre-existing condition, health insurance was out of the question for him financially.

In 2013, a year before the first consumer enrollment for the Affordable Care Act, Theo needed open heart surgery. He applied for Medicaid to help cover his costs but he and his partner would have had to sell their house to qualify for Medicaid. Even if he did qualify for Medicaid he still faced extensive co-payment costs. The hospital covered much of his costs through their uncompensated care program by paying for his portion of the Medicaid co-payments. Theo agreed to pay the hospital $50/month for the rest of his life to stay out of bankruptcy again.

Theo is not alone. In 2013, medical costs were the leading cause of personal bankruptcies, outstripping credit card debt and mortgage foreclosures. http://www.nclc.org/images/pdf/debt_collection/pr-cfpb-medical-debt-2014.pdf

Posted in Uncategorized

Gerrit’s Story

Gifts From A Stroke: A Hard Look At America’s Health Care is not just my story. It is podium for others to share their stories.  I will publish more stories as I finish my book. Here is Gerrit’s Story.  Please feel free to share: 

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My stroke experience began in August 2003 with what felt like a sudden crick in my neck.  The pain started interfering with my sleep and for some reason I would begin to black out if I held my head a certain way.  I went to see a chiropractor, but his neck manipulations did not help the pain.  He didn’t realize that he was actually aggravating a tear which had formed inside my vertebral artery, the real cause of my pain.  After three days of treatment I quit, but a clot began to form at the tear.

Then at 10:30 PM ten days later, the clot broke off and entered my brain.  My right arm went numb, and then my leg.  Then my speech slurred.  I took some aspirin since I thought I was having a stroke and called 911.  Apparently the EMT’s did not agree since I did not fit the normal stroke profile (I was only 48 and in good health).  My right side continued to lose functionality as we made our way to the hospital.

There I had a CAT scan, but it was not high definition enough to show what was going on.  My doctor, like the EMTs, suspected at this point it was a hysterical episode rather than a stroke.  Later the next day I had an MRI, but the doctors were still not sure what had happened.  I lost function several times on my right side but it mostly came back each time. After four days I was discharged.  The doctors now suspected a VAD (vertebral artery dissection), leading to a stroke.  They told me to take it easy, which I took to mean I could take a nap if I wanted to.  I left with slurred speech, poor functioning on my right side, the inability to make a fist, and a determination to overcome what I thought was a temporary setback.

I charged back into my life vigorously.  I exercised and tried to ignore my persistent dizziness and partial loss of function.  I even agreed to ride my son’s new motorcycle back from central Oregon for him.  This was a big mistake – the helmet pressure on my neck pushed what was in fact a VAD into my brain and gave me a second stroke, much more serious, about three weeks after the first.  Fortunately I made it home before it hit.  I woke in the hospital completely paralyzed on my left side this time, and spent a month there recovering only partly as well as before.

There had been a whole series of mistakes leading to this point. First, I should not have gone to a chiropractor for my neck pain. I should have seen an MD, a medically trained generalist.  Second, I should have paid attention to taking it easy and not have rushed back into my life, and especially not ridden a motorcycle for hundreds of miles.  My first neurologist, it turned out, was having a mild heart attack during the time he was reviewing my MRI when he missed the positive signs of my VAD.  No one noticed this until after my second stroke.  I wonder if the second stroke would have happened at all if the VAD had been correctly diagnosed the first time.

I am very thankful I had health insurance.  I would have been bankrupted without it.  Being self-employed, however, meant that I had to take out a home equity loan to pay my bills while I recovered.  It took me three years to pay that off.  I was also lucky to be able to go back to work and not have to rely on Social Security disability.  That takes a year to kick in even if you are approved.

Insurance paid for my enormous hospital bills and also good rehabilitation therapy in the hospital and at home.  The nurses were wonderful and played a key role in my recovery.  I regained a good part of what I lost, but rehab is hard work and requires a lot of self-motivation.

Recovery, however, is not always a straight line.  After six months of recording milestones and making progress, I hit a wall.  I stopped improving and fell into a near suicidal depression—my failing marriage at the time of my stroke had indeed fallen apart, I was crippled, I could no longer play my beloved guitar, and I felt like I was living a nightmare in a body that was no longer my own.

As I contemplated suicide, I realized I could “take my life, or give it away.”  I realized that no matter how awful my life had become, I could still make a positive difference in someone else’s life.  That was the beginning of my real recovery.  I began reading to seniors in a nearby nursing home, volunteered at Food Lifeline, and helped out panhandlers with granola bars.  I took the helm of the Young Adult Stroke Survivors support group, gave generously to family and friends, and began to look much more charitably on the less fortunate.  It only took me 50 years and a near death experience to figure out that the greatest happiness comes when you give freely of yourself with no expectations.

I have found I can use a synthesizer to perform music again, in a different way than before.  I still cry at the drop of a hat thanks to the emotional lability which often comes with a stroke, I walk with a limp and a cane, and I sound like a drunk if I am too tired.  I am very lucky not to have had any cognitive impairment, though, and I have returned to work full time. I even wrote a technical paper which was accepted for publication.  Six years after my stroke, I found love and remarried.

I am reminded of what I lost every day.  But I have also gained a great deal and have become a better person in ways because of my near-death experience.  I’m one of the lucky ones.

Gerrit

Posted in health insurance, patients' voice Tagged with: , , , ,

Thanksgiving: For Karen and Courage

The opinions expressed herein are exclusively mine. 

I  have many reasons to be thankful this Thanksgiving. I am alive. I have many people to thank and I will. But I want to acknowledge my friend Karen. She made the call that led people to my door when I was probably hours from death.

For my thankfulness I want to honor her courage. She died on August 27 after years battling Ovarian Cancer. The cancer started in her ovaries. It was temporarily contained by chemotherapy only to migrate to her brain where it was stalled by radiation. But then it found her spine and crept into her spinal fluid. There was no mistaking what was before her.

The Centers for Medicare and Medicaid Services (CMS) said it wants to reimburse doctors for end of life discussions. This provision, if passed, will not start until 2016. It is solely about discussion. Not action. Many already rail against it. But we need theses discussion with our families and physicians about what we want at the end of our lives or we could die in ways we would not wish.

Much attention focused recently on a terminally ill young woman who moved to Oregon so she could have a dignified death she could control. She did not have that choice where she lived in California. Only three states have Death with Dignity laws now: Oregon, Vermont and Washington.  http://www.deathwithdignity.org/acts

We won’t all agree on Karen’s path. It is, however, what she chose. We do deserve to have control over our own lives. Our lives are ours. Atul Gawande, MD, in his new book Mortal Lives examines the importance of discussing our choices so they reflect our wishes at the end of our lives when people too often are faced with others making decisions for them. As nearly happened to me.

We need these end-of-life discussions.

Karen’s Death With Dignity.

Karen fought her stage four cancer bravely for years. Not one doctor said she had any chance to survive. She was fiercely independent, a devoted friend and loving wife. She was Auntie Karen to my son Remi Miles.

She did not want to live without quality or dignity. As her cancer spread she often had double vision. She lost sight in one eye and could no longer read. She was an avid reader. She loved her garden but could no longer plant or water it. She kept declining.  Her favorite foods no longer tasted good. She finally could no longer help herself. She needed help dressing and bathing. She was too weak to stand by herself, get in and out of chairs, the sofa, the bed or manage her personal hygiene.

She had no appetite. Nothing tasted good. She weighed less than 90 pounds. She was tired all the time. She could not manage stairs and was restricted to the second floor with their home’s only bathroom. The kitchen was downstairs. She could not walk. She needed a wheelchair to move on just one floor. Her pain could only be managed with increasingly powerful drugs that left her physically and mentally exhausted. She could no longer do many things she loved such as reading, visiting with friends or enjoying eating or gardening. Her husband and friends gave her joy. But she did not want to live as an invalid with no ability to participate fully in her life.

She did not want to die a prolonged painful death. She did not want to live tied up to tubes. She knew she was losing what she loved most to constant pain, fatigue and dependency. She did not want to linger in what to her would be a lifeless life.

To have relief she chose to control her death. This was not a simple or casual act. Her choice could not be assigned to others. She was the only one who could decide. She had to be mentally competent. She had to have the signature of two different doctors who certified that nothing could be done—that there was no reversal, curative treatment. Then she could order the medication but had to wait at least two weeks before she could take it.

She could even decide not to proceed if she wished. She could not take the medication by herself. She had to be asked twice by a health care professional  if she wanted to drink the medication. This was not a rash decision. It was not an impulsive action. It was not coerced.

She died peacefully with the health care professional, her husband and her family by her side. She could say she loved them and say good-bye.

End of Life Discussions

End of life discussions require many difficult personal decisions. Not all would make or believe in Karen’s choice.

I am eternally thankful to Karen for my life. I am thankful Karen had a choice in hers. We all should be able to have these discussions with our families and our doctors. We all owe ourselves these discussions.

At this Thanksgiving learn and respect each other’s wishes. Be thankful for family and friends. We are, actually, all we ever really have that counts in the end.

Kathleen O’Connor © November 16, 2014

Posted in patients' voice Tagged with:

From the Heart: Too Many Mired Mantras

New attempts after attempts to slaughter the Affordable Care Act drive stakes into my heart.  I cannot be silent and remain true to myself and others.

From 2003 to 2009 we at CodeBlueNow! had the honor of working with the American people to learn what they wanted in a health care system.  They did not care about specific prescribed, slogan solutions from the right or the left. They said they wanted a fair system that works for them, their  families and neighbors. They want accountability, equity and affordablity: http://www.oconnorreport.com/old/codeblue/VotersHealthCarePlatform.pdf

We were honored by The Seattle Post Intelligencer which  ran a 10 consecutive week series on the need for health care reform. Authors included former Republican and Democratic governors, a national technology executive, small business owners and franchise business owners among others. Read the papers here:  http://www.oconnorreport.com/old/codeblue/vital-signs/codebluenow-papers-seattle-pi-series/CBNpapers.pdf

In 2000 I wrote: The Buck Stops Nowhere: Why America’s Health Care Is All Dollars and No Sense. A second edition was published  in 2003.  I am now updating it. The following testimonials supported the second edition: http://oconnorreport.com/testimonials/

Now we need to tell  our stories.  Some already appear in Gifts From A Stroke on this blog.  A  new website will soon be dedicated to our voices.

How You Can Help

I can’t do this alone. This journey is more than mine. You can send your story. You can lend your name to this effort and join me as a sponsor.  Sponsorships over $100 will be recognized unless you wish to remain anonymous. I have a marketing plan and a budget so I can be held accountable. I am NOT a 501(c)(3). Donations, therefore, are NOT tax deductible.

I believe what three seasoned health care reporters once told a health care executives’ conference remains true:

“All we have are anecdotes. But, in the absence of data from you to the contrary, that accumulation becomes fact.” Our voices must become the facts to turn the tide for a health care system that works for us.  What else besides our voices will?

Without our voices the buck will never stop anywhere except in special interest pockets.

Kathleen O’Connor© November 11, 2014

Posted in consumer protection, Health Care Reform, patients' voice, policy and politics Tagged with: , , , , , , , , ,

A Story of Courage, Grit and Love: Don’t Be Passive–Be Engaged

This could be just Bill’s story but his courage and determination are intertwined with the love and tenacity of his wife Kerri. He would not be alive without their mutual grit.

Bill was a successful banker with a full life. And then little things began happening to him that seemed odd. His face burned and he could not stop constantly hiccupping. It became so bothersome that his doctor finally recommended an MRI. They found a cyst on his brain stem.

They interviewed neurological surgeons. One did seven to eight such surgeries a year. Through a friend they found another neurological surgeon who did seven to eight such surgeries a day.

It was complex surgery. Bill needed it to live. When they asked if the surgery was life threatening, the surgeon said: “Absolutely. You need to get your affairs in order.” But the surgery was a success.

He was in the neurosurgery ward. Bill was in the ICU for a week and in the hospital for another week. He went home thinking all was well.

A month later the symptoms returned. The surgeon could not do a biopsy. The nerves were too entangled. They did another MRI. The cyst had re-filled. Bill faced another surgery to put in a stent to drain the cyst. Within three months Bill’s symptoms returned. Then came another surgery with a longer stent.

Within a month a staph infection developed in the stent and it had to be removed. This was Bill’s fourth operation in 15 months.

Kerri navigated his care from the beginning. She is an attorney and is particular about details. She double checked the neurosurgeon’s appointments and orders. She made sure Bill was getting the right medications at the right time and in the right form. Nothing escaped her attention. She had had her own health care experience and knew the importance of paying attention. When she was given the wrong medications once she refused to take them until they brought the right ones—even though she was labeled a “medication hoarder and a thief.”

Bill almost didn’t survive the surgery on Christmas Eve. He was not expected to live. He was in a sterile room with sterile walls. There was nothing familiar or encouraging. It was a place to die. He had failed every test—could not remember his name, what day it was, who was president. He had no memory. Bill said he knew he was supposed to know the answers but didn’t. Kerri was told they were losing him. She was not ready to let him go.

She joined him in bed and looked at him eyeball to eyeball and told him he was not going to die. He was not done yet.

She brought in a clock, some pictures, a TV, some of his hiking videos. She told him who he was and brought him back. The surgeon asked Kerri put in writing what she had done and she did. Later when they had to return the rooms were filled with clocks, pictures, and other items that gave patients a sense of orientation and something familiar rather than blank sterile walls. She was able to show that it was possible to do this and still have a safe sterile environment.

The surgery saved Bill’s life. The year was 1992.

In 2010 Bill developed new problems. His balance was off. He attributed it to old age. He had a cortisone shot but it made no difference. He thought his doctor was not listening to him. He changed doctors.

He had a urinary tract infection. The urologist and his new neurologist made the diagnosis that he had a rare disease—Multiple System Atrophy. The brain’s signals are not received by many parts of the body. Which is why his bladder didn’t contract and why he had poor balance. MSA is progressive. There are no known treatments or medications. Only five out of 100,000 people are diagnosed with this disorder.

As Bill says, probably 99% of all doctors have never heard of this disorder. The urologist and the neurologist worked in the same clinic and they talked with each other. Kerri said they listened and were good communicators. They gave Kerri and Bill explicit permission to ask questions. There was no limit on the time they could have with the doctors. As Kerri indicated: “They were respectful and warm. But they did not sugar coat anything.”

Bill fell down the basement stairs. He has no memory of the fall. He remembers nothing of the three days in the hospital. He requires a caregiver in addition to Kerri so he can walk and get out of the house. He is taking writing classes. If it were not for Theo, his caregiver, he would not get the exercise and help he needs. They had to move from their home because he could not live with stairs.

Bill now walks at least twice a day for about a half hour. He exercises his brain by using Lumosity and is taking a writing class to work on his story and a memoir for his children He has been taken off one medication that has potentially negative neurological side effects. They are hoping it will improve some of Bill’s cognitive problems.

Kerri and Bill are the first to admit they are extraordinarily lucky—they had extraordinary insurance from Bill’s employer and they have the means to cover things their insurance doesn’t.

But the core message they think people need to know is: Don’t be passive. Don’t just unthinkingly do what a doctor says. Make sure the doctors are listening to you. If you are going to get better find a doctor that believes that you can. Most of all—be actively engaged in your care.

Posted in patients' voice Tagged with: , , , , , , ,

Health Care is Foreign

Health Care Is A Foreign Country

Do you have a passport? In this case that means insurance. Even if so, the question is: Is this country friend or foe?

Let’s see: If you are sick you are pretty much on our own. Entering the health care system is like arriving in a strange land without a guide or translator. There is no embassy to explain local customs. The customs and rules vary by state and insurer.

No one speaks the same language even among health care professionals, not to mention insurers. They all have their own dialects. There is no interpreter to tell you what something means, even in English.

There are no clear rules. The insurance you have or don’t have dictates the care you can receive and how much you have to pay. Many insurers tell you what hospitals you can use, the doctors you can see, the medications you can take, how much they cost and how much time you can spend with your doctor. Costs differ between insurer and health system. Some are based on your income, age or disability.

There is no central bank, national currency or even one consistent exchange rate or billing form. “Exchange rates” depend on the insurance you have and/or the hospital or clinic you use. Or the state or city where you live. Divide and conquer is the name of the game.

The embassy, if there were one, would not even offer safe haven when there are disputes. Rules and regulations differ by state and type of employer. If you are an employee in a self funded/self-insured company with a multi-state employer like banks and national corporations, you are not subject to state rules, taxes or regulations, unless you are a franchise.

There is no standard billing format. Coverage rules and regulations vary from state to state. Even national programs like Medicare have many choices for supplemental policies that boggle even the most informed minds.

Can you get what you want and need for you and your family? It comes down to the two words that best describe American health care: It Depends. That said, with the right insurance and the right doctors, you can get some of the health care in the world. It Depends.

Coming Soon: The Buck Stops Nowhere: Why America’s Health Care is All Dollars and No Sense(third edition) and more personal stories from Gifts From A Stroke and its new website.

Copyright, Kathleen O’Connor, 10/27/2014

Posted in consumer protection, patients' voice, policy and politics Tagged with: , , , , , , , , , , , , ,

Rehabilitation: What You Should Know

My memory began to return when I was moved to Rehab…..I soon learned Rehab specialists are like drill sergeants and chief petty officers. Their job is to be sure I was “up and at ‘em.” They trained, trained, and re-trained so even the smallest task was embedded into my brain. They were to assure I would win on the battlefield of my recovery. Or at least have a fighting chance of surviving with my new normal….

There is a concept called “neuroplasticity” of the brain. The brain has the capability of healing depending on the injury. If a harmed patient is not challenged mentally or physically, however, the brain will not build new neural pathways to replace those lost or connect those torn apart….

Does everyone get…rehab care? And who pays for it? Turns out the answer is: It Depends…..

I was still in a life boat on strange seas, but by this time I had at least learned how to row even if I had no idea how I was going to get back to known shores…

What You Should Know: Rehabilitation care is not always covered. It is dictated by your insurance.  Check your coverage with an insurance broker or office of the insurance commissioner.  A certified therapist suggested these questions for those who have insurance: 1. What type of services does the patient qualify for? 2. What areas does the patient have as deficits and strengths? How can they be assessed and improved? 3. How can families transfer what has been learned from in-patient rehab to outpatient rehab and home? 4. Is there someone to help with that transition, not just with rehab, but other needs? 5. Are there patient advocates to help with the decision making process? 6. How can loved ones help with practice skills when the patient is not in therapy?

  • can the patient physically do a task?
  • is the patient oriented to time and place?
  • is the patient self-motivated or need reminders and oversight?
  • can the patient transfer their skills to other aspects of their rehab?

7. Is caregiver support available? (social workers can connect to caregiver support groups) 8. Is mental health support available? Physical, occupational and speech therapies are often covered, but is mental health?

Posted in health insurance, hospitals, Medicare, patients' voice Tagged with: , , , , ,

A Veteran’s Cancer Story

In the last post Gerrit said he had to take a loan against his house.  He had health insurance but he could not work.  He had mortgage and living costs in addition to medical.  Social Security will enroll people in Medicare if they are disabled.  It takes about a year to activate.  Here’s another story.  This time about a cancer patient who’s a veteran: 

Two years ago Sue, a US Veteran, and her husband needed financial help to travel about 600 miles round trip from Central Washington to Seattle where she could receive cancer treatment for her Stage IV head and neck cancer. This type of cancer requires major life adjustments including help with eating and speech and necessitates physically altering surgeries. She and her husband had exhausted their credit cards and depleted their savings to pay for transportation to and from treatments. They had no money for gas to go to and from local VA facilities much less travel for needed treatments in Seattle. Because they lived in central Washington it was hard to travel in the winter when snow clogged the mountain passes. A rare patient assistance program in Seattle, CancerLifeline, finally helped them with travel and support needs.  www.cancerlifeline.org

Various cancer support agencies exist across the US. Some focus on their municipal area, some are state wide and there are a few national organizations, such as Gilda’s Club. Each provides slightly different support. But many do not provide financial support for needed non-medical services.

Coming Next: Gifts From A Stroke:  My Recovery, And Questions For You to Ask

Kathleen O’Connor(c) September 24, 2014

Posted in consumer protection, hospitals, Medicare, patients' voice Tagged with: , , , , , ,

A Hard Look At America’s Health Care–Chapter One

This begins my story and my hard look at America’s health care.  Why I write this is in the preface and at the end of this chapter.  It is not just my story.  There are other voices that will be heard. We can do policy paper after policy paper as we have since at least 1929-1932.  Without our voices nothing will happen. We need to be heard, not silenced by the system’s constraints or the rules of the game. After all, it is our lives and the lives of those we love.

Chapters will be published episodically.  Please read on to follow the journey.

Chapter One:  I Have No Business Being Alive–My Stroke

I was on the floor almost three days before I was found. My whole body was purple, green and blue.  My eyes were closed and swollen like an exotic fish.  But I was severely dehydrated. My left side was immobile. It was not clear if I was breathing. If I did not have close friends I would be dead.  I was not expected to live.

I remember only scraps of what happened to me. I knew I had been sick with intestinal problems.  I knew I had asked friends to pick up some Pepto Bismol and Alka Seltzer. I live in a large condominium complex. I knew someone would be going to a store. It would not be an inconvenience.  Luckily when I returned home in March the bag with the medicines was still intact.  The receipt was dated Sunday, January 19th at 9:36 AM.  I was taken to Harborview on Tuesday, January 21st probably around 10 or 11 in the morning.

I had not been returning phone calls and e-mails which is unlike me. My friend Karen called a mutual friend who is a realtor and she knew how to reach the condo manager. The manager found the door unlocked.  She did not want to go in. She called another resident who said call 911. She did but the EMT’s were out on another call.  They told her to call the police. She did. The police asked if I was breathing or if there was an odor.

The EMT unit soon returned and rushed over. They put me on a stretcher but it was too wide for the elevator.  Instead they wrapped me into towels, sheets, or whatever was handy and took me down two flights of stairs “like a sack of potatoes” as the manager said.  When they found me I was apparently having seizures.  I was intubated on the way to Harborview.  I had seizures for three days in the hospital.

I was moved from the ER to ICU to Neurology. I moved from a shared room to a private room or vice versa. I finally went to Rehabilitation on January 29th.  I have no memories of those eight days before Rehab.

I do, however, remember telling what must have been the ER staff:  “You can’t keep me in this hospital overnight without my permission. That’s illegal.  I know. I’m a health care professional.”  I joked with friends later that at that point they must have either drugged me or restrained me or both. When I read the hospital’s records later at home, I read they actually had restrained me.  A friend who was there also confirmed this. I had no idea he was there.

The same day?  They put electrodes on my face and connected them with some sort of goop that stuck in my hair. “I want my comb.” I was told I did not have one.  “I have one.  It’s in my purse.”  I was told I did not have a purse I came by ambulance. “No I didn’t.  I would have remembered that—six cute guys; siren; red flashing light.  I would have remembered that.”  But, I was taken by ambulance with a siren and a red flashing light.  I still don’t remember that.

What I Remember

I can read Harborview’s notes about what happened and hear stories from my friends who visited.  I remember virtually nothing of that first week. I know people came by, but I am not sure who or when.  After I reached Rehab, people kept telling me I would not stop talking about a garage sale.

I was very dehydrated when I was found and dehydration comes with hallucinations. My ‘garage’ sale was in my hall closet.  People kept coming in to buy things.  It was close quarters. Items people wanted were behind the mirrored closet sliding doors.  Somehow a Russian mafia hit man made it in.  He was disguised as a Japanese sumo wrestler but was too small. I knew he was a hit man who cared less about my life than swatting a gnat. He could dispense with me without a wink of conscience.  He hung out at far end of the closet where I keep my shoes in a hanging rack, far from my front door and far from help.

I knew he wanted to kill me. I kept telling myself:  “get away from him.”  He would not blink an eye if I died.

I know friends came while I was in intensive care.  But only because they told me.  I don’t remember the rooms I was in.  I was told I had a private one. I have glimpses of that room because some people visited me there.  But I cannot remember if that was before or after the room I shared with another couple.  My memory of them, however, is seared into my brain.

The couple was there because she fell from a ladder and landed on her head. She was rushed to Harborview by a Medivac helicopter.  She and her husband lived about a two hour drive from Seattle.  Her husband tried to ride with her but the Medivac crew said he was too heavy.  He took their dog to a neighbor and drove to Harborview. The entire time they were there he slept in a recliner next to her.  He kept telling her “You are my life. My everything.”  I don’t remember how many nights we shared the room or if it was only one.

Once I heard a man scream and scream. It was night. I was scared. Harborview is a public county hospital that takes all patients. The loud speaker called Code Grey, a code I did not know.  I later learned it is for help with a patient who is a security risk.

And then, my bed.  It had guardrails on both sides by the head and shoulders and by the hips and the legs.  I was told briefly if I moved the guardrails that an alarm would sound. The guardrails were to keep me from falling or moving by myself. If I needed to use the bathroom I had to ring a nurse.  I also had a phone.

I was told not to bend my left arm with the IV because it would set off an alarm. I remember bending it and hearing the alarm.

Later (where?) there was suddenly a loud dial tone.  I thought I had accidentally dropped my phone. I searched and searched because I did not want to disturb the nice couple.  I couldn’t find it.  I grabbed the guardrail. The bed started moving.  No one came to stop the alarm. I couldn’t find the phone.

The dial tone ended.  The bed stopped moving. A nurse came and told me grabbing the guardrails caused the mattress to move.  I don’t remember if they had told me before or not.  I remained afraid of their beds my whole stay.

Months later a therapist asked me if the bed incident could have been a hallucination.  It is possible given my vivid memory of the fictitious garage sale.  When I returned home the closet was a mess.  A bamboo pole the Japanese use to heat tea and hangs from the ceiling was leaning by the window instead of being in the closet’s back corner.

Later I learned the EMT’s had returned and straightened my furniture. Another neighbor had cleaned and vacuumed the house. She and other friends took the produce from my refrigerator so it would not rot and smell. When I returned all was back in place. The hit man was gone.

The brain can be a capricious critter sometimes but it is not static. It can heal.  Much depends on where the stroke is and the type of stroke. I could recover in large part because I had a very rare stroke—a cerebral sinus venous thrombosis which has an 80 to 90% recovery rate.  People seeing me six months later would never think I had had a stroke because I had no visible impairment of speech or movement.

As I emerged from my fog, I felt like a passenger suddenly tossed into a life boat with other passengers.  I did not know if I could row, or how to row. I didn’t know the other passengers, what they could do or if they were friend or foe.  I didn’t even know what skills I needed to survive life in a vast open sea. I felt lost and adrift.

I did not really start to heal until I went to Rehab. They made me exercise my brain to regain my mind and my body.

The hard reality is I have Medicare, Medicare supplemental insurance, knowledge of the health care system and the good fortune to have a vibrant network of supportive and generous friends and colleagues who wrapped themselves around me and took care of so much of my life.

Too many people don’t have such gifts.  Which is why I write.

Kathleen O’Connor © June 2, 2014/August 2014

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