Post Stroke Fatigue

I remain a very loud advocate for the benefits of sleep, sleep, sleep, and more sleep interspersed with periods of learning and cognitive challenge. Jill Bolte Taylor, Ph.D. in My Stroke of Insight.

After the good news that I did not have cancer, we felt deep relief. It was a good feeling after almost three months of fight/flight mode. During those months, I was too stressed to notice the fatigue. I had more important things to occupy my mind.

I soon became aware that I felt exhausted all of the time—mind, body and spirit– even after a good night’s sleep. Rest did not take the fatigue away. Meeting someone for lunch was exhausting to think about. Other than family, I put my social life on hold. I needed my energy focused on my stroke recovery, which can take a year.

Jill Bolte, Ph.D. wrote in My Stroke of Insight:

Occasionally friends came to visit, but GG [Bolte’s mother] recognized that social exchanges used up my energy reserve and left me totally drained….She made the executive decision that getting my mind back was more important than visitation, so she stood as the guard at my door and strictly limited my social time.

Forty to seventy percent of stroke survivors experience this fatigue, and it doesn’t matter if you had a minor or a major stroke. The fatigue can pass over time; for some, the fatigue never goes away.

Working a bit in the yard would leave me spent. I couldn’t read for long, and writing left me worn out. We went to the lake this summer for a week. I felt drained by Wednesday.

The medical world does not know the cause of post-stroke fatigue. Probably it’s a mixture of physical and emotional factors. No specific medications or treatments will eliminate post-stroke fatigue. A healthy lifestyle is most likely the most one can do.

With the help of medications I usually got a good night’s sleep. Still, I remained exhausted. I had to prioritize my days and set goals mindful of my limited energy.

Jill Bolte again:

My energy was limited so we had to pick and choose, very carefully every day, how I would spend my effort. I had to define my priorities for what I wanted to get back the most and not waste energy on other things.

I made long naps (1-2 hours) a normal part of most of my days. Gradually, I am getting better at organizing my time around my energy level and setting my priorities around my overall recovery.

Jill Bolte:

For my recovery, it was critical that we honor the healing power of sleep. I know various methodologies are practiced at rehabilitation facilities around the country, yet I remain a very loud advocate for the benefits of sleep, sleep, sleep, and more sleep….

I’ve mostly made my peace with fatigue. I feel frustrated with it at times but we can adapt to our circumstances. I consider myself fortunate for being retired. I have time, flexibility, and can focus on things beneficial to my recovery. Melanie is a wonderful wife who loves me and supports me. I cannot emphasize how important a supportive spouse is in life and in recovery.

This and the previous three posts told my stroke story. I will work hard to prevent another stroke. I am grateful for no major loss of functions. I had my traumas after my stroke and they humbled me. I choose to see the strokes as a calling to greater development as a person approaching old age.

More to come.

Alcohol, Anxiety & Xanax

Bad anxiety is probably the single most miserable emotional state humans can experience. It is truly a living hell.

Dr. Charles Raison, Psychiatrist, Emory University Medical School.

 

My stroke experiences in 2017/2018 took me back to June 1974:

I was in trouble, and I knew it.

I sat on the edge of the hospital bed and smoked Marlboros—one after another. I was alone in the chilly room. My hands shook. My second night was a lonely Friday night at St. Mary’s Hospital Extended Care Center near the West Bank of the University of Minnesota in Minneapolis. The third floor was an adult alcohol treatment center reputed to be one of the toughest and best in the country—a boot camp of human development for broken lives. I normally got drunk on Friday nights. I was cold sober on this June night and I didn’t feel at all like the Marlboro man.

I had just finished the book, I’ll Quit Tomorrow. The book described the dynamics of alcoholism. Each page was a sharp-edged piece of a shattered mirror that reflected my life. I was shaken to my core—until that moment, I did not know I was an alcoholic. I was defenseless: my denial penetrated, and my delusions about my life exposed to me. I saw the impact of alcohol on my life, my work, and my relationships. What I saw hurt. The person I saw was not the person I started out to be.

The father of three young children, a Phi Beta Kappa graduate of the University of Minnesota, and a 3-year special agent in the United States Secret Service, I was now 28 years old, unemployed, and broke. I was 6’3” tall and weighed 150 pounds—down 20 pounds from my normal weight. I was alone, scared, and depressed.

I stared at the sterile and indifferent wall across from me. How did I fall into this abyss of despair, addiction, and self-betrayal? Could I find the courage and strength to save myself? Was salvation even possible or had I gone too far? Could I redeem myself? Could I again realize my possibilities?

I could change or die, and the choice was mine alone. My “bottom” wasn’t as low as some, but it was as far down as I wanted to go. I chose life.

Treatment—the most difficult and most spiritual experience of my life— challenged me more than any other event of my life; I had to look at myself honestly under watchful eyes. I was humbled by the experience, and by the power of authentic human connections. I felt anxious although I didn’t know it then. I was determined to rise above this setback in my life.

I left St. Marys with a profound sense of commitment, albeit more than a little shaky. Treatment began my conscious life of self-development and my vow to live my values to the best of my imperfect ability.

My existence depended on an authentic and value-driven life.

As I described in an earlier post, my five strokes were painless with no permanent loss of function. My days in the hospital were easy.

But the next three months (January-March, 2018) were as difficult as or harder than my month at St. Mary’s. As I went through the weeks of TIAs, new spots on my brain and a cancer scare, I felt anxiety and fear that may have been greater than what I felt when I was in treatment almost 44 years ago. I was anxious about dying, the unknown, potential disability, and simply losing myself. And probably many other things.

I had never thought of myself as an anxious person. I was never treated for it.  Sure, in the hours before I gave a speech I wanted to run away. Didn’t everyone feel that way? When I began to talk, I immediately went into my flow mode and I had fun and usually got high marks.

Once, anxious about being confronted, I didn’t go to a post-treatment growth group session long ago at St. Mary’s. But I showed up an hour later and took my lumps. In my last year or two at the Star Tribune, I felt anxious. I feared people with more power than I wanted to neutralize my success. The thing is, they did.

I asked Melanie if she thought I was anxious. She smiled and said if she were to list three top characteristics of mine, anxious would be the first one. Daughters Cari and Becky thought the same. I did worry and sometimes catastrophized outcomes. But I figured that was my job as a leader and consultant: Figure out the future possibilities and put scenarios together to avoid unanticipated and negative outcomes.

Whatever the past, I knew I felt a dark anxiety after the strokes.

My doctor prescribed me Zoloft for depression and low dose (.25 mg) Xanax for anxiety (both common after a stroke). I was proud of my long sobriety and did not want it threatened. I resisted Xanax. I thought of Xanax as a highly addictive drug and I feared going down the path of addiction again. My mind flooded with memories from my 10-year journey into the darkness of alcoholism and my first years of recovery as I faced life without alcohol. I did not want to go through another recovery from addiction.

I felt anxious about taking a drug to reduce my anxiety.

Melanie pushed me to take Xanax anytime I felt anxious. So did my daughters. I considered Xanax to be a worst-case drug so I would tough out the day and only take a Xanax as a last resort. The doctor prescribed up to two tablets (.25 mg) twice a day as needed. I took no more than one tablet a day. After a few weeks of going around and around about how much Xanax to take, my doctor said, “Let me worry about addiction. You will not develop tolerance or addiction taking one .25 mg of Xanax a day.” I never took more than one tablet a day. Many days I took none. Xanax also helped with my hand tremor, worse after the strokes and my moderate voice tremor (called Essential tremors). As the weeks passed, I came full circle from resistance to acceptance of Xanax as a drug that could help me where other drugs had failed, when taken as prescribed.

I’m sure many recovering alcoholics and those who struggle with addiction to other drugs, have had the angst I had felt. My friend, Bruce Nelson, wrote to me and I share a long quote of his so wonderfully written:

I can particularly relate to your mixed emotions over the Xanax. I started my 39th year of sobriety yesterday, and have wrestled a lot with the same dilemma you faced over those decades of recovery. I religiously avoided anything stronger than Advil for 30 years.  

 Then I went through a hip replacement in 2009. I couldn’t tolerate any of the physical therapy I needed to do after the surgery and my doctor persuaded me that opioids would dull the pain so I could do the exercises necessary to get my new metal hip to work with the rest of the body. I was really frightened, but what he said made sense. So I used them for two or three weeks and everything worked just fine. Yeah, I felt a little high from the drugs. But my then 30 years of recovery had also changed me. I wasn’t desperate for an escape or eager to shut down my feelings, like I was back in my active alcoholism days. The opioids served a purpose, and I used them for that purpose and then quit taking them.

I went through a similar episode with them in 2011. I had a huge malignant tumor on my chest, between my heart and lungs, on something called the thymus gland. They split my chest open just like they do for open heart surgery and yanked the mass out.  Full recovery after radiation. But I went back on opioids as I recovered from the surgery, with pretty much the same effect as they had after the hip replacement: [I] took them until the pain subsided and then stopped.

My real opioid challenge came in 2014. I slipped on the ice and broke two bones in my back. The pain was incredible, so I went back on the drugs. Unlike surgical pain, the back pain seemed to be without end. It turned out that I also have spinal stenosis, a chronic pain condition. Well, I quit the opioids two months after I fell. The pain had subsided a little but was still bad but I was damned if I was going to take those things for the rest of my life. They were dulling my brain to the point where it was really hard to focus on anything.  

 My primary care physician saw me a month or so after I stopped taking the pain meds. I thought I was doing pretty well, but she said she could see pain all over me, from my face to my movements and even my voice. She was keenly aware of my feelings on opioids. “What would you say if I could give you something that is not a narcotic that would take the pain away?” she asked. I told her masochism wasn’t my thing, and that I would be glad to try whatever she was talking about. She prescribed Tramadol. Amazingly, it did exactly what she said it would do.  Most of my pain was simply gone, and there were absolutely no feelings of being high or in any way mentally dulled.   

 Several months after I started taking it, Tramadol was reclassified as a narcotic and a controlled substance. My doctor swears she didn’t know this was coming! It was a combination of two pressure points, one out of corporate greed and the other well placed. Whatever company markets Codeine put all sorts of heat on the DEA because the non-narcotic status of Tramadol was giving it an unfair competitive advantage. The growing opioid crisis was another source of the change. Apparently there is some low-grade opioid in Tramadol and addicts were taking it in huge doses. I’m still taking it. My lifestyle would be greatly reduced without it. When I don’t take it, I have several hours during the day where the pain overrides everything else. I can’t think, focus or even begin to carry on a conversation. The Tramadol reverses much of the pain and allows me to feel more human.  

 I also keep a very limited supply of Percocet on hand for very special occasions like when I try to insert my 6-foot-8 body into an airline seat or have to go through a CT scan or a two-hour dental procedure. Those kinds of things bring the pain way past the Tramadol level.

 When I started this email, I had no intention of going on this long with my medical stuff. Sorry about that. It’s just that your story about your trepidation over the Xanax really resonated with me, in a way that only those who are in recovery can understand. Taking these drugs can be an agonizing decision.  But in the end, I think we both did the right thing. We both used drugs at one point in our lives to detach from life, to not feel or think or focus. Now we carefully use them to make all of those same functions possible. It’s a careful and delicate balancing act.

 See Bruce’s blog: Let’s Think This Out for some wise, smart and well-researched commentary on our crazy world.

 I’ll end with another quote from Dr. Raison:

“The vast majority of people who take benzodiazepines for extended periods are highly compliant and follow doctors’ orders closely. Indeed, in my experience many anxious patients who would benefit from benzodiazepine treatment are so worried about addiction and other problems that they deny themselves an important potential pathway to well-being. But the other extreme is even more problematic. Although in my experience benzodiazepines do not have the addiction potential of something like opiate pain pills, they can cause significant trouble when abused. Hence the importance of taking exactly as prescribed.”

More to come in future blogs.

 

TIAs, Strokes and Cancer

The world breaks everyone and afterwards many are strong at the broken places. Ernest Hemingway

See my blog post: “I didn’t see it coming.”

Melanie and I were walking around the neighborhood on a Saturday afternoon in mid-January 2018. The four fingers on my left hand went numb. Then my left side, left cheek and left forearm. This wasn’t the first time I had these symptoms since leaving North Memorial Hospital on January 2, 2018.

The first time the symptoms returned happened on January 4, 2018, the second day after my release from the hospital. The fingers on my left hand went numb and our lives changed again.

While in the hospital, the nurses and doctors were adamant: “If you have symptoms, call 911. Time is brain cells.” Should we call 911? I felt resistant. Our insurance company had paid $1,700 to transport me a few miles from Maple Grove hospital to North Memorial hospital on December 29, 2017. I didn’t want to risk my life to save the insurance company money but calling for an ambulance because my fingers went numb for a short time seemed excessive to me.

Melanie called my internist. He counseled us not to go to the ER: “You’ve already been treated for the strokes. The ER can’t do anything. Double your dosage of Lipitor until I see you.” Then my lips went numb. Melanie called the doctor again. He repeated his instructions.

At first, we felt afraid for my life. Some nights I dreamed of numbness on my right side, which would be a new stroke. The dreams were so real; I needed a day to determine the numbness was not real.

One night, I dreamed I was walking down a dark street. Three younger men walked toward me. I knew they would hurt me. I was powerless to stop it. When they got right in front of me, I began to swing at them. I heard a crash and Melanie yelled at me. I woke up and saw I had thrown a punch at the lamp on the bedside table and cleared it of everything.

The transient ischemic attacks (TIAs) continued. I lost trust in my body. I didn’t know how it would react at any time. I was hyper-sensitive to every feeling. I feared TIAs or a stroke when I was away from home. I put my social life on hold, except for family.

After two weeks, my internist said, “What you feel are TIAs. They will not hurt you. You are not having another stroke. I think they will pass in six weeks. Don’t go to the ER unless the symptoms last more than two hours or are on your right side.” We wondered why someone in the Stroke Unit hadn’t warned us before we left the hospital that the symptoms could return. We would have eliminated much fear and anxiety. Then again, maybe they did or my doctor did and I didn’t remember.

We were veteran TIA managers by that Saturday when we were walking. We stopped in a park and sat until the symptoms passed about 45 minutes later and then we walked home.

On the day when I had my last TIA, February 12, 2018, I had my first appointment with the neurologist assigned to me in the hospital. She noticed my moderate voice tremor that had started at age 69–a gift from my father’s genetics.  She asked, “Are you nervous?” I replied: “You don’t know the half of it” and I told her of the weeks of unpredictable TIAs, including the one I had that morning.

The neurologist had blood drawn for many blood tests she wanted. She also wanted another MRI. I had the MRI two days later. The next evening, three days after my last TIA, the neurologist called me at 8:30 pm.

Life was about to change again.

She said, “Don’t get nervous.” That really means, “Get real nervous.”

Melanie’s notes from the conversation:

“The MRI from today shows the old infarcts (strokes) and a few new equivocal infarcts. They are not bright like the other strokes, so it’s hard to put them on a timeline. It could be his heart (atrial fibrillation, or Afib) so she wants him to see a cardiologist pronto for longer-term monitoring. She wants to closely monitor him.

She also wants him to go for labs tomorrow and she is going to check for vasculitis [I didn’t have it] and throw in a few more tests. She is putting that order in tonight so we can go at any time. She reiterated to watch for new symptoms and go to the ER if right side, or can’t walk, etc.”  

I wrote in my journal that night, “Feeling afraid of having another stroke.”

We were at the lab an hour before the lab technician reported to work so I went to a nearby clinic and had the blood drawn there. After several weeks of appointments, I had the heart monitor implanted into my chest. The monitor can track my heart for AFib for up to three years to pick up what would be a rare and almost invisible AFib in my heart rhythms. Should the monitor detect AFib, my blood thinning medication would be changed from a high dose aspirin and Plavix to a drug better for AFib situations. I predict they will not find AFib.

A week later we saw the neurologist again. She said that one of the blood tests had “spiked” and she would refer me to a hematologist for a consultation. The spike could indicate Multiple Myeloma— cancer I had never heard of. She said the odds were 50%-50% that I had it.

“Multiple myeloma is a cancer of plasma cells. Normal plasma cells are found in the bone marrow and are an important part of the immune system. In general, when plasma cells become cancerous and grow out of control, this is called multiple myeloma.” —American Cancer Society.

When the Cancer Center at North Memorial didn’t have the referral after several days, Melanie called the neurologist’s office to ask why the referral hadn’t been made. The referral was made within minutes for two weeks later. The two weeks went by slowly.

On March 16, 2018, we walked into the North Memorial Cancer Center (not a pleasant feeling) for my appointment. The hematologist walked into the examination room.

Were our lives about to change dramatically again?

He said, “You don’t have cancer.” I don’t think he had even looked at the lab results. He explained the spike I had can indicate Multiple Myeloma but a large group of people who have the spike don’t have or ever get cancer. However, about 1% cross over to the cancer group each year so I would have to get blood tests every six months.

We walked out of the hematologist’s office relieved. I don’t mind saying that the previous almost three months had scared me! I had been in “fight/flight” mode 24/7. I felt anxiety like I never had before. Over those months, life had humbled me, humiliated me and shown me once again just how little control I had. I was grateful for the outcomes of those events. I didn’t think of myself as “broken,” but I had some cracks in my body and psyche.

When the stroke process began, I decided to be open and honest about what I felt with my doctors and other caregivers. That decision left me vulnerable as many of my feelings were difficult to share: fear, anger, and anxiety. But I was open and honest, as I felt appropriate, as we went along.

I now had an internist (He was always there for me when I needed him), a neurologist, a cardiologist and a hematologist. I got good medical care from them. As for their bedside manners, not so good with one of them. It is important that we feel comfortable with our doctors. We need to trust them and be open with them about ourselves. If we don’t feel comfortable with a doctor, we should make a change.

I had put my life in Melanie’s hands. I shared every dark emotion with her and scared her at times. She made my appointments and took notes, which was invaluable. She fought for me and she loved me.

As the weeks rolled by, I realized Melanie carried a big burden: me. I hated the patient role. I began to keep some things to myself—but not important things. I tried to help around the house more and let her know I appreciated her. A time or two, I shared that I feared she might not want to be married to me: after all, I was wounded. Melanie destroyed those fears.

My children (Becky, Cari, and Mike) and a daughter-in-law (Aubrey) and I drew closer during these months. They were there for me. Natalie, my step-daughter, was a physician’s assistant in a hospital ER and was always there to answer medical questions and offer support.

Dr. Walter Waldinger, Director of the Harvard Study: A 75-year longitudinal study of adult development, said the research showed him that relationships are critical to a happy, healthy and long life. We need at least one good friend. How do we know a good friend? Waldinger said a good friend is a person who is there for you when the going gets tough. 

I heard from the extended families of my life, neighbors, and acquaintances and colleagues. I appreciated their notes and calls. A couple of people stand out for me. Each highly empathetic and compassionate and able to share themselves with me. They were there for me throughout my ordeals.

Heide was a good and trusted friend before my strokes and our relationship grew and deepened during the difficult months. She wrote smart and insightful emails. She brought food and visited me at home. She practiced a compassionate “tough love” when I needed it. I found I could share any emotions with her and be met with empathy, understanding, and compassion.

A newer friend, Bill, lived halfway across the country and we communicated periodically. Our exchanges were real. Bill shared himself and his life with me, and he helped me.

And, as all who have had tough times of any kind know, some folks disappoint us. As I thought about that, I turned my eyes inward and I remembered all the people in my life over the years who could have used my support. I took my own inventory and what I saw didn’t always make me proud.

Between January 4, 2018, and March 16, 2018,  I had survived 19 TIAs, a possible second stroke and a cancer threat. For the first time in almost three months, I had no outstanding issues or appointments. Maybe now I could focus on my recovery from the strokes.

More to come in future blogs.

 

 

 

 

I Didn’t See it Coming

In 2004, I read “Younger Next Year” by Chris Crowley & Henry S Lodge, M.D. The book’s message was: In your 40’s, you can decide to clean-up the bad habits in your lifestyle: Some 70% of premature death and aging is lifestyle-related, according to Lodge and Crowley. You can watch your health improve and live much longer, without significant decline, until you are in your 80’s or longer and then die quickly. Even at age 60, we can get “functionally younger every year for the next five or ten years,” wrote Crowley and Lodge. I embraced, and still do, the message of the book and recommended it to many people over the years.

Protecting our health became a core value for Melanie and me.

Last fall, I turned 72 years old: I hadn’t had a health problem since kidney stones in my mid-thirties—no surgery required. Throughout my sixties, I wondered when I would get hit with a major health issue. I didn’t think it was probable that I would get out of my 70’s without a significant health problem.

When I thought about dying, I figured that strokes would be involved: My dad had a small stroke at about my age and then another at age 90. He declined a feeding tube and passed away quickly on his own terms—just as Crowley& Lodge wrote. Dad was my model for living and became my model for dying with dignity.

Melanie and I walked five miles almost every day. I worked out with resistance tubes, dumb-bells and stretched my body three times a week. Other than having to manage my sugar consumption, my diet was good. My weight was fine. I didn’t smoke or drink.

On December 21, 2017, I was working in my office. I felt fine. My index and middle fingers on my left hand suddenly went numb. The sensation passed quickly. I Googled “Fingers went numb” and Carpal Tunnel Syndrome came up. I hollered to Melanie, “I think I have Carpal Tunnel Syndrome.” I forgot about it and went back to work.

The next day, three fingers on my left hand went numb along with the left side of my tongue and I couldn’t speak for a moment. These symptoms passed in a minute or so. I called my doctor. He said, “Stop taking a low-dose aspirin and take a full dose aspirin until I tell you not to. If it happens again, go to the ER.” We planned to go to the Fargo area for Melanie’s family Christmas party on Christmas Eve. We considered staying home to be safe but we decided to go and keep our fingers crossed. Other than some anxiety for me, I had no symptoms on the trip.

Back home on December 29th, we sat down for dinner. I said, “Melanie, my fingers on my left hand, my left side, left leg, and left side of my tongue are numb. I could not speak correctly. The symptoms went away in a short time. We talked about going to the ER and I was resistant in case we were wrong. We decided to go and I asked Melanie to call my doctor along the way. He said we were doing the right thing. We went to the Maple Grove Hospital ER. We got right in and the doctor’s and staff went right to work. At first, because the symptoms came and went, they thought my symptoms were TIA’s:

Transient Ischemic Attack (TIA) is a warning sign of a possible stroke and is often called a “miniature stroke.” A TIA is caused by brief stoppage of blood flow to the brain. Symptoms are the same as a stroke but appear for a shorter period of time (from a minute to 24 hours) and then go away. A TIA is basically a stroke with one important difference: blood flow resumes before any serious brain damage occurs. From the North Memorial Hospital Stroke Education Guide.

I had an MRI and an orderly wheeled me back to the emergency room.

I was joking with the nurses and technicians when the ER doctor came in. He sounded kind of gruff: “You did have several strokes (five). You are lucky: you could have had a major stroke. We don’t have a stroke center here so we will send you by ambulance to the stroke center at North Memorial Hospital (Robbinsdale, MN). The ambulance will be here shortly.”

The paramedics rolled me to the ambulance and I felt the minus 15 degrees temperature. The two young men had heard that I was once a Secret Service agent and we joked about that during the drive.

I arrived at the stroke center at about 1:00 am on Saturday, December 30, 2017. I had lots of nursing attention for a while: they took my vitals, drew blood and hooked me up to liquids and blood thinners. About 15-20 staff came in and out of the room each night. I didn’t sleep much—too many interruptions and too much stimulation. I wasn’t scared: the symptoms were gone and I didn’t feel any paralysis or loss of function. I could talk fine. Everyone had treated me with dignity and respect and I enjoyed their care and attention.

Melanie walked in early Saturday followed by grandson Nate and step-daughter Natalie. I was happy to see them.

I passed all the physical and cognitive tests. The neurologist’s assistant came and spend a long time answering our questions. I liked her. Actually, I liked all the diverse staff-members that helped me.

We were told that half of the strokes emanate from the heart. Fifteen percent of them are due to the patient having untreated Atrial Fibrillation: an irregular and often fast heart rate that can increase the risk of strokes and heart disease. Blood clots in the atria (top chamber of the heart), get pumped out of the heart to the brain, blocks a blood vessel and causes a stroke. I wore a heart monitor in the hospital and would wear one on my first week at home to see if AFib was present. If they detected AFib, they would give me different medication but they wouldn’t change my medication (Plavix plus a full-sized aspirin) without the diagnosis of AFib.

I had an echocardiogram W/Bubble Study of the front of my heart to look for defects in my heart where blood could form into clots that could go to the brain and cause strokes. No defects were found.

On Sunday, the doctor told me I would fast and he would get a Transesophageal Echo W/bubble procedure scheduled for later in the day. It didn’t happen: this was the New Year’s Day weekend and staffing was minimal. I would fast again on Monday, Jan.1, 2018. I fasted and again no procedure. Now the procedure would be first thing Tuesday morning so I would fast for the third day in a row. Overnight, my nurse told me the procedure would be early Tuesday morning. As morning approached, something changed: my nurse said I would have the test on Tuesday but maybe not first thing. Shifts changed and I got a new nurse who I had not had before.

She told me the test would not happen on Tuesday. I got mad. I said, “Hold on, you don’t have the history. I have fasted for three days and each time the procedure in Cardiology got canceled. This is not acceptable. This procedure is the only thing holding up my discharge. I’ve been here one or two extra days because the hospital couldn’t get this done over the weekend. Go talk to the doctor and tell him this.”

Melanie and I waited for the nurse to come back and plotted what I would do if the test couldn’t be done that morning.

Twenty minutes later, the nurse came back and said, “The gurney is on the way to take you to Cardiology for the procedure.” The orderly came, I hopped onto the gurney and he wheeled me to Cardiology and into the procedure room. A nurse was waiting and prepped me. I sat in something like a dentist’s chair. I had to gargle Lidocaine for two minutes and then swallow it. Then they would put me to sleep and they would go through my nose and go down my throat into the food pipe to get pictures of the backside of my heart. The examination would show clear pictures of the heart chambers and valves. The doctor came in and asked me a few questions. The next thing I knew I was awake. The procedure had gone fine and no issues were found.

My internist later said to me: “You had the Cadillac of heart examinations.”

Melanie and my daughter Becky and the nurse and two doctors were waiting in my room when I got back. An hour later, Melanie picked me up at the front door and we went home.

I thought the story was over. But it had just begun. More to come in future blog posts.

Stroke Warning Signs from the Mayo Clinic:

  1. Trouble speaking or understanding,
  2. Paralysis or numbness of the face, arm or leg,
  3. Trouble with seeing in one or both eyes,
  4. A headache,
  5. Trouble with walking

 

A Hurricane in Texas Reminds Us of a Flood in Minnesota

We are Norwegian, German, stubborn and fighters. This is our place, and we’ll stay here.

Steve Carbno, disaster coordinator for the Salvation Army, Fargo, ND

Hurricane Harvey, that still ravages Texas, brought back many memories from our experiences with a record flood in 2009. I am sorry for the people affected by this hurricane: their lives with be changed forever and the road ahead will be difficult and exhausting.

Our story:

The fall of 2008 brought record rainfall to Fargo, ND/Moorhead, MN–across the Red River from one another. December had more snow than any month in history. Worried about spring floods, I added more flood insurance. Throughout the winter, I watched the weather daily: Would it snow, might it melt some, what were the flood predictions? I went on a 3-week photo trip out West at the end of January, 2009. I checked the weather back home every day.

As March began, the National Weather Service predicted a flood crest in the mid to high 30-foot range. Dennis Walacker — who was the mayor of Fargo, North Dakota, and had been public works director in 1997, and who was credited with saving Fargo from the flood that year — thought the crest would be lower. Our home would be safe to almost 39 feet.

The flood came early, fast, and big.

We began to sandbag on March 20, 2009. Melanie was born and raised in this region, and her mother and eight of her brothers and sisters lived in the area. They had children and some of their children had children. They turned out in force to help. Many came back day after day. Melanie’s mom, sisters, friends, and co-workers took over the kitchen. Workers were well fed.

Melanie was a good friend to many, and those friends turned out en masse. Her professional colleagues were tremendous in their help and concern. We had members of the girls’ volleyball team from North Dakota State University and a high school wrestling team help out. Helpers included bankers, coaches, teachers, builders, farmers, attorneys, scientists, garbage men, federal agents, retired folks, and the students. Without the students — from grade school through college — Fargo/Moorhead would have been lost to the flood.

Three days later, we had filled approximately 20,000 bags with 35 pounds of sand each. As many as 150 people worked at once. It was an amazing example of self-organization — the chaos of people coming together for a common purpose came to order and did so quickly. People did what they could, leaders emerged and leadership shifted naturally, creativity took over, and rules took a back seat. Skid steers tore around our yard carrying filled sand bags. It broke Melanie’s heart to see her yard and landscaping torn up, but survival becomes the sole priority in a crisis. We worked in rain, snow, and mud. People cared, and fought to protect their property and that of their friends and neighbors. Laughter filled the air, and we felt a powerful sense of purpose and community. I’ve never been part of such an expenditure of energy before; people working together was a magnificent sight to see.

Each day the predicted crest got larger. Over a few weeks, it went from 34 feet to 42-43 feet. During the days we sandbagged, the crest prediction rose a foot or more each day. Every time we thought we were finished, we had to dig a little deeper within ourselves and pile the bags higher. We were exhausted, but our core group of men and women would not stop. We thought we were done when our dike protected our home to 40 feet. Overnight it snowed 7 inches. The flood and snow scenes were surreal. Climbing over the plastic-covered dike was a slippery venture.

Later that day, the National Weather Service — a constant source of frustration — raised the crest prediction by another foot. We went to work yet again. The heartiest among us pulled a boat through the strong current and freezing slush to the dike on the road that led to our home. They then walked through snowdrifts to their pick-up trucks a couple of blocks away. They went in search of filled sandbags, loaded their trucks, and returned. They loaded the sandbags onto sleds, pulled them through the snow and over the dike, and loaded them into the boat, which they pulled through the slush and fleeing voles to the house where they stacked them onto the dike. This work went on from late afternoon until 1:30 a.m. We again thought we were OK.

Our home surrounded by water.

The next afternoon, they raised the crest prediction again — this time, to 42-43 feet. We were surrounded by water. We went to work again in the late afternoon and followed the same process as the day before. We worked deep into the evening. Suddenly we had sewer backup in our basement. The public works department had shut down the lift station without telling us. Melanie slammed the state-of-the art sewer shut-off down and the backup stopped, but the damage was done. From now on, the toilet would be a bucket outside.

Then the authorities ordered an evacuation of all residents in a huge part of the city. A 43-foot flood would devastate the community. We didn’t know then that they had no authority to “order” an evacuation. They meant well, but they scared us, and we decided to evacuate.

At about 9:00 p.m., it was time to go. Melanie locked the door and climbed over the sandbags. She was the last person out of the house and into the boat. As we left our neighborhood, a plow closed the road behind us.

The next morning, two family members boated to the house. Our dike had held. No water had gotten under the dike, over it, around it, or through it. When they took the dike down many weeks later, the Army Corps of Engineers supervisor said it was one of the best-built dikes he had ever seen.

But a back-up sump pump had failed, and we had 9 to 12 inches of water in our finished basement, along with the sewer backup. We had moved many things of value to the second floor, but there was still a massive amount of accumulated stuff floating around the basement.

The harm was done. A costly finished basement was ruined, and many possessions were contaminated. Our furnace, water heater, and freezer were destroyed. The house smelled of sewage. Carpets on the main floor and top floor were caked with mud from the frantic efforts of a dozen or more volunteers to move our possessions to the top floor. Our yard and landscaping were ruined by the dike-building process. Our road was torn up by sand trucks. Two neighbors lost their homes. Others had water damage worse than us.

Family members spent several nights in the house and watched the dike and pumps. Melanie and I stayed with Melanie’s mother for a week. Our dogs were farmed out to relatives. We adapted by the minute.

A few days after evacuating, we returned home. We parked a few blocks away. We used the sled and walked through snow, water, and mud in waders and got to the dike. We climbed over it and got some necessities and put them into garbage bags. We carried them over the slippery dike and onto the sled and pulled it to our car. After two trips, we were exhausted.

Four days after we left, we got another 10 inches of snow — 17 inches in less than a week — along with heavy rains while we sandbagged, a record flood, and blizzard winds. There was a second, maybe even higher, crest on the way. The city looked like an exhausted war zone.

Finally, they rescinded the mandatory evacuation and opened the dike on the road so we could drive to our home. The water had receded across the road. The city inspectors and insurance adjusters began to show up. The birds and wild turkeys returned.

The city declared our home uninhabitable.

Two homes in our neighborhood of 11 houses were destroyed. Three others had water in the basement. The peninsula was a mess from the clay dikes, home dikes, and roads damaged by heavy equipment. The second crest was lower than predicted. The clean-up began.

Fighting the record flood was the easy part.

Our home had 20% damage, according to FEMA. Fighting the flood was an exhilarating, high-energy experience — the best experience of creative chaos I’ve had. Cleaning the mess up afterwards and going to our wounded home and neighborhood were sad, painful, and depressing encounters with death and destruction. We rented a townhome in Fargo while we cleaned up. We would never again live in our home.

The neighborhood looked like a war zone after the flood waters receded: fences down, roads torn up, landscaping destroyed, sandbags stuck in the trees and buried in the ground, homes surrounded by sandbags and then dirt rings after the Army Corps of Engineers took the dikes down. Mud was tracked everywhere for weeks afterward. We cleaned water and sewage from our basement, ripped out wallboard, and threw away truck-loads of possessions accumulated over 15 years.

We entered a neutral zone of uncertainty and not knowing about our lives. About half of our neighbors wanted to stay, and began to explore ways to make their homes safer by elevating them, or building a clay dike or a concrete wall. The rest wanted to leave. For us, four floods in 12 years were enough. For others, this record flood was the first time they were threatened and once was enough. As one neighbor said about our once safe neighborhood, “Maybe nature doesn’t want us here anymore.” Melanie and I vowed to turn this disaster into an opportunity for transformation.

I knew that a neutral zone (the place between endings and beginnings) wasn’t just a place of confusion and uncertainty. The neutral zone can also be a condition for creativity if we can live with the discomfort and anxiety for a time.

Often people go into submission after a disaster and let others decide their destiny. We would not go quietly into compliance and submission to the bureaucracies and to those who re-victimize victims. We would assert ourselves, ask questions, and push back on bureaucratic pronouncements. We would attend every meeting held, and we would tell our story and express our opinions to anyone who would listen. We wanted to influence the chaos around us and shape our own future.

Part of me enjoyed the challenges of the flood’s aftermath. Another part of me felt scared of entering into new and bureaucratic domains. We fought for what we believed was right with insurance companies. I sent letters to the politicians and did what I could. I attended every City Council meeting for months after the flood and asked questions and told our story to the mayor, city manager, council members, and city engineer every chance we got. We found them to be good and caring people, willing to listen.

We expressed our fears of future floods with our elected state and federal officials. I visited the disaster center three times to try to get answer to my questions from FEMA and SBA officials. The front-line people were awesome: caring and compassionate. The bureaucracy — excessive process and slow to act — exhausted us, numbed our minds, and extended our patience to the breaking point. The rules, language, processes, procedures, and regulations were complicated and hard to understand. It would take about 1½ years to work through all the issues and bring the flood follow-up to a conclusion.

Our home was put in a project for buyouts. I asked the city engineer what motivated putting our home in this proposed FEMA project. He replied, “Because it makes sense.” That’s what responses to disasters need more of: what makes sense.

From time in the neutral zone, new visions form if we will live with uncertainty for a time.

Just before the flood, a job opened up in Minneapolis (225 miles southeast of us) that Melanie was interested in. The flood was traumatic for both of us but more so for Melanie, who had built the home and raised her three children there. She lost many possessions in the flood that held meaning for her. For her the beautiful home died the day the water came in. She did not want to return. She decided to go forward with her job application. Like everything at this time of our lives, the job process moved slowly.

We imagined and thought through different scenarios for what might happen with the job and our home. In our hearts, we most wanted to go to Minneapolis. My two daughters and five grandchildren lived there. I also looked forward to renewing old friendships from decades of earlier life in the Twin Cities. Two of Melanie’s three children would be living in Minneapolis that fall. The job would be a professional advancement and a challenge Melanie would enjoy. She would get to use talents and skills honed over a 30-year career.

We envisioned new adventures in our upcoming lives as empty-nesters and grew more and more excited. We decided that if Melanie got the job, we would go regardless of the fate of our home.

Suddenly things began to happen: Melanie was offered the job and compensation was negotiated and agreed upon quickly. Within 72 hours we had rented a beautiful home 15 minutes from her new workplace. Melanie gave her notice in Fargo and began work in Minneapolis 10 days later. We moved our possessions a month after that. The city purchased our home for a fair price a few months later. A year later, we purchased a new home. Melanie thrived in her new job.

The natural disaster created the conditions for us to renew our lives. We refused to be victims. Despite the difficulties, we felt alive as we grieved our losses. We grew as people. And, in the midst of a contentious time in America, we experienced the deep goodness and decency of the people around us. We will be forever grateful to them for the help they gave us.

Best wishes Texas.

 

 

 

 

Why Didn’t James Comey Confront Trump?

Lordy, I hope there are tapes.

James Comey

 

During former FBI Director James Comey’s testimony before the Senate Intelligence Committee (June 8, 2017), Senator Marco Rubio asked Comey why he didn’t air his concerns about Trump immediately while he was still FBI director.

“I think the circumstances were such that I was a bit stunned and didn’t have the presence of mind, and I don’t want to make it sound like I’m Captain Courageous; I don’t know whether even if I had the presence of mind I would’ve said to the president, ‘Sir, that’s wrong.’ I don’t know whether I would have. But in the moment, it didn’t come to my mind; what came to my mind was, ‘Be careful what you say.”

James Comey’s history reveals a courageous man. Was he showing false humility to avoid telling a deeper truth that he may not have been totally aware of?

I can imagine a different response from Comey to Rubio’s question:

I was stunned and caught off guard by the things President Trump said and the underlying messages he sent to me. I also felt repulsed by the nature of the man. My instincts told me at our dinner meeting (Jan. 27, 2017), ‘This is a dangerous moment’ and I better remember what he says and document it for he will lie about what he said if the meeting became important in the future. I focused on Trump, his words and his unspoken messages to me. I had to get through this meeting with my integrity intact and without getting fired. Not to save my job: I wanted to protect the Russia investigation from him and survive long enough to gather whatever evidence the President wanted to give me. I decided that I would document all future engagements with Trump. 

I knew some things intuitively: Confronting Trump would be futile and unproductive. He attacks anyone who confronts him. He would have refused enlightenment and efforts to educate him. I was not the President’s lawyer or advisor and it was not my job to school the President on how to do his job or to stop him from going down an inappropriate path that may become criminal. Besides, he wasn’t naïve, ignorant or inexperienced; he knew exactly what he was doing.

I talked to the Attorney General about not leaving me alone with the President. He said nothing. I did not trust him enough to say more to him. Resignation would have harmed the investigation and the FBI and there might not be a Special Counsel today had I quit. I knew without thinking about it that I would stay and do what I could to advance the Russia investigation and protect the integrity and independence of the FBI.

It was my job to document the facts and my experiences with the President. I would do so until I could no longer contain the situation and was put in a position by the President where I had no choice but to resign or sacrifice my integrity. I wondered how far he would go. I reviewed each conversation with Trump with my FBI staff and we discussed my strategy. I needed the documentation and witnesses to protect myself and the FBI. The evidence I documented led, I believe, to the appointment of the Special Counsel.

People considered Comey a smart political operative within the government bureaucracy. I suspect he was more calculating than he wanted to acknowledge–even, perhaps, to himself. I think his “calculating”–fully conscious and rational or on emotional and intuitive auto-pilot–was a good thing for it served a noble purpose and he carried his plan out ethically. For political reasons, maybe it was easier for Comey–a man who doesn’t like to talk about himself–to be self-deprecating about his personal courage than to share his deepest essence and personal reactions with the Senators. Comey may not be Captain Courageous but he has more nerve than most of us and he’s no naive boy scout.

I had several situations in the corporate world—as a leader and as a consultant—where I was threatened with the loss of my job or income if I did or didn’t do certain things that went against my values. I sat across from angry executives who insulted, demeaned and threatened me and who had no respect for niceties or talents for confrontation. I also sat across from executives who delivered dark metamessages with a soft tone and “safe’ words. Trump embraces both tactics to get what he wants. Like Comey, I felt stunned. Also confused and crazy. Imagining myself interrupting people of questionable intent who had power over me to tell them how badly they were handling themselves makes me laugh. I would have been fired and ridiculed for my naiveté. It is even more ludicrous to expect Comey to do so with Trump. Confront a mean narcissist? Get real. Comey had a greater purpose.

In dealing with such people, I often operated at a gut and intuitive level in real-time without the opportunity to think everything through as rationally as I might have liked. These were new, confusing and dangerous situations with no manual to tell me how to handle myself. My values guided me. It took me years to sort out some crazy situations and to make sense out of nonsense. I suspect James Comey will be reflecting on his “nonsense” experiences with Trump and his own feeling  and reactions for a long time.

The moment always came with those executives when I had to choose to sell my soul, quit or get fired. My commitment to truth and my values was deep and I never gave in to threats made by powerful people. Comey managed his situation as long as he could without selling his soul. Trump fired him before Comey felt he had to resign (May 8, 2017).

It’s hard to stand up for our values in a world filled with madness. James Comey faced darker craziness with far greater things at stake than I ever had to deal with. He did so in the public eye certain to be criticized and attacked. He is a noble and honorable man.

I look up to the James Comey’s of the world who—often alone–stand up to malevolent people with full knowledge that they will suffer personally for their commitment to something larger than themselves: in Comey’s case a powerful allegiance to our Constitution and to the integrity and independence of the FBI and to his own values.

I was once asked disdainfully, “Who do you think you are, the keeper of the values?”

Yes, I am the keeper of the values and so are you and you and you.