Thursday, August 27, 2015

Strokes and vacations!

My “blog vacation” is over! In other words, my son is starting 5th grade and now I have time to pursue my blog!  Is that a good excuse? I do not know. I really needed to take a break and reflect about what has transpired in my life since my strokes.

And, I spent my summer enjoying my life, my recovery, and my family. I spent the summer with our son. I relish the everyday “things” that most people take for granted.  

My son has always kept me going throughout the dark times when I just wanted to die because of my strokes almost 4 years ago. He gave me hope and a reason to live. I wanted to see him grow up. I wanted to witness the first days of school and the last days of school.

When our son started school, he went to the BSU Children Center. He progressed to Monroe Elementary for kindergarten. Now, it is in the 5th  Grade at Sacred Heart Catholic School in Boise.

It seems so long ago. I lifetime ago really.

When he started, I could not really attend his events. I rarely dropped him off or picked him up from school.

I was “busy.”

Life has a way of changing our perspective. Illness, strokes, death, and changes are the hallmarks of our life since he started to go to school.

Now that he is in the 5th grade, I do count my blessings because I am “around” to see my son grow up into a wonderful kid.

I missed a lot of his school “stuff” because I was working and stressed.  

In January of his 1st Grade year, I had my strokes. My parents died 10 months later. I cannot imagine what he experienced.

I am 5 years old. Last year, we were robbed, and I am still scared. 

I am 6 years old now. And now, Daddy is in the hospital. What is a stroke? Daddy cannot talk and cannot use his right arm now. He does not even know my name or his own name. 

People whisper that Daddy will never be the same. Will he die? 

I hate the hospital…the smells and the sounds. I do not want to see Daddy now. 

Daddy comes home from the hospital on my 7th birthday. We go to Red Robin, and I have to help my Daddy to go to the bathroom because he is so scared.

I am 7 years old.  

I am so scared. 

And now, I might have to change my school.  I do not want to change. 

Mom is trying to hide a lot my dad so I won't be worried. Why so many playdates? 

At school, people whisper. 

I do not want to be noticed. 

Mom needs help. When she picks me up, other parents do not talk to us. Mom seems alone and sad. 

I do not understand about money. What is "tuition?"   

And now, my Grandma and Grandpa are sick and then they just died. 

What is death? 

Why is God doing this to me? 

I just want my friends. I just want my life back. I want to be normal. 

I want Daddy back.”

Fast forward and the 4 year anniversary of my strokes will be in January of 2016. In September, my parents will have been dead 3 years.

2012 was a devastating year for all. “Annus Horribilis.”

However, we are happy despite of all of “it.” When I get depressed, I just think of our son…our funny, goofy, smart, irreverent, and nice kid. I am grateful for him because he gave me a reason to live. Even now. 

Tuesday, July 7, 2015

“Pools of Sorrow, Waves of Joy” and memories of Mom

Last week, my son and I went to the barber. While I was waiting for my son, I noticed the barber had an old Beauty School text book. It was the same book my mom used when she went to Beauty School when she was studying for her cosmetology license. It was a 9 month program.

That 9 month program changed our life. During that period (late 1969 thru 1970), my parents got divorced, my dad moved to Boise, and mom remarried. To say that the 9 month period was tumultuous is an understatement. I was 8 years old.      

Years later, when I was in college, I took a course called “Women in History.” My professor asked the students to do an “oral history” about some woman.

I chose my mother, Faye Marlene Bailey Dunham Brown. Her real first name was “Joy,” and I entitled my oral history about Mom “Pools of Sorrow, Waves of Joy.”

My mom's life was “Pools of Sorrow, Waves of Joy.” It seemed fitting that her real name was “Joy.”

The title refers to a Beatles' song “Across the Universe,” and the beginning lyrics are:

Words are flowing out like endless rain into a paper cup, They slither while they pass, they slip away across the universe. 

Pools of sorrow waves of joy are drifting through my opened mind,
Possessing and caressing me. 

Mom was reluctant to be the focus of a term paper about her. I knew that she had a horrible childhood, and overcame a lot.  I think she struggled until she died to fight the demons in her brutal childhood. The fact that she did not descend into drugs, alcohol, and worse is a testament to her desire to have a family.  

Of course, it was not a fairy tale ending. Mom did the best she could do given the lack of tools she was dealt with.

When she died, I wrote this on my blog:

“Our mother died yesterday, a victim of ovarian cancer. She left us 13 days after our step father passed away. This was a quick exit after 80 years. Her considerable life force has ended. She was many things: Hardworking, beautiful (inside and out), driven, compassionate, feisty, loyal, and loving. But, Mom was simply a great mom and grandmother. That was all she ever wanted to be. She had so many great friends and people who loved her. I will miss her laugh. I will miss her endless phone calls. I will miss the best chocolate chip cookies ever. I will miss my dear friend.”

Faye and Stan in 1947
And she was: “Hardworking, beautiful (inside and out), driven, compassionate, feisty, loyal, and loving.” But she could be mean, hateful, and unforgiving. But, given her childhood, I understood the reason. I did not excuse her behavior. In fact, I called her out a lot. “Just stop Mom!”

The person who really knew her the best was my dad, Stanford Dunham. Though they divorced after 19 year and it was bitter for many years, they loved each other until they died. 

They could not be married to each other.

When Dad was dying, the last person he wanted to see was Mom. I drove Mom to the hospital on Christmas Eve. Dad hugged me, and said, “I just want to talk with your Mom alone for a bit.” They closed the door. They talked for about 30 minutes. After that, Dad lapsed into a coma and died on December 28, 1993.

Dad told me about what he witnessed as a young man when they were dating and then married. They started to date when Mom was 15 and Dad was 17.

Dad’s parents were loving parents. It was a Norman Rockwell childhood.

Joe and Joy (Faye) Bailey 1933
Mom’s parents were different. Mom was born in 1932. Mom was illegitimate.  When she was 1 year old, her dad moved her to another state and changed her name. Not legally of course. She did not see her real mother until she was 22.

Her dad loved her, but, her stepmother beat her.  Dad said that Mom’s dad was very strong. However, he was not strong enough to protect his daughter from his wife. According to Dad, fueled in booze, it was a caustic relationship and Mom bore the brunt of it.

The last straw was in November of 1949. Mom’s parents were “mega-Catholics.” Dad went to the Lutheran Church. When Mom was 17 and Dad was 19, returning from a date, Mom’s stepmother and her sister, started to slap Dad.  Dad said later, that he remembered Mom flew across the hood and shoved her stepmother down. And they fought. “The first time she ever fought back.”

Dad’s crime? He was a Lutheran. Mom’s parents said, “I would rather you be dead than married to a Lutheran.”

Her parents kicked her out, and she had no place to go other than Dad’s wonderful parents.Two weeks later, Mom and Dad got married. 

Mom’s dad did walk her down the aisle and left.  Her stepmother waited in the car. They kept the engine running. 

Later Mom, Dad, and her parents reconciled. Mom loved her "Daddy." Mom and her stepmother had an OK relationship off and on through the years.  

Mom and Dad's marriage was a sad beginning. Both of my parents had other dreams and plans. Dad had an opportunity to go to Norway where his grandparents were born. Dad told me he would have gone to college. Mom?  She wanted to head to Hollywood and leave everything behind. Was she talented enough and beautiful enough to make the big time?

Who knows?

Instead, they had their first child 10 months later and forgot those dreams. As Dad said, “We just started living. We had no choice. That is what you just do.”

19 years later, their marriage was a train wreck. Years later, when they had time to reflect about that marriage, both of them told me “It was MY fault.”

Dad, in particular, told me that he was working too much and took Mom for granted. Sometimes when I was irritated with Mom, my Dad would say something like, “You need to respect your Mom. She has sacrificed a lot for all of you, and you have no idea about what she has gone through in her life. I was there in the beginning. I knew her parents. I was in that house when we were dating. She was not exaggerating at all.

I always thought about Dad’s admonishment to me when I was irritated with Mom. Basically, “Cut her some slack. You and your brothers have no clue.”

That term paper was blunt. I interviewed her in Twin Falls, ID on Christmas Day in 1982. It was snowing. It was dark. Subdued. 

Mom in Beauty School (1969-1970)
In a very measured and calm voice, Mom recounted her life.  I knew some of the stories. I knew some basics. She filled in the blanks, and it was sad and heart wrenching.

"Why did she enroll in Beauty School," I asked?

“My marriage was in trouble, and I needed to make a living to support my boys. I had no skills and I was terrified. In those days, a divorcee was considered a slut. In the divorce, I could have gotten 50% of your Dad’s retirement, but he worked and I did not. I did not think that was fair. So, I needed some way to support myself.”  

At the end of the session, I asked Mom, “Why are you willing to do this?”

Quietly she said, “Well, I try not to think about the sad parts of my life. I do not want to do this, but if it will help you, I will.  I also want my kids and my grandchildren to know how much I love them. Maybe when you have kids, you will understand what true love is. I have made so many mistakes in my life. I have tried to be the best mother I could be, but I had know real motherly examples. My stepmother hurt me a lot. My real mother abandoned me. Your Dad’s Mom, Grandma Agnes, was the best example of a mother. I learned so much from her. I tried to be like her, but sometimes, the damage was done. I still try to be the best mother, but I know sometimes I fail. I am not trying to make excuses, but this has been a hard life. My faith, my kids, and my granddaughter keep me going. I try NOT to remember the bad times in my life. Rather, I try to be a good person in spite of everything. I do try.”
Faye and Agnes Dunham 1954

When I turned in my term paper, my professor commented to the class after she gave me an “A+,” “Mark’s paper about his mom made me cry. It shows that one basically obscure woman made a mark in life more than most women. She is every woman.”

Now that she is been dead for almost three years, I think of her often. That old 1960’s Beauty School text book, triggered this whole blog post.

I have the "written" word because of the old term paper. I think I have the old cassette tape from the interview.

33 years later, Mom’s voice will still be heard.  

Monday, June 29, 2015

Dream Sideways and Strokes

Memorial Day is a holiday whose origins are not clear anymore. Memorial Day is a federal holiday in the United States for remembering the people who died while serving in the country's armed forces.

However, today's citizens celebrate the "beginning of summer" not honoring military service. People BBQ, drink, gather with family and friends, and get their first sunburn. It is the American ritual.

This year on Memorial Day, two families were beset by tragedies.

One person I barely knew. The other person, I never knew at all.

But, our three stories are entwined.  

Years ago, I went to college with a man I knew slightly. We would pass in the hallway and say “hello.” I kind of forgot him other than a vague memory. We reconnected of Facebook, and we would “like” things about our families.  On Facebook, we would say “we should have lunch. Soon.” 

He died of a heart attack on Memorial Day. He was 55 years old. He was a year older than me.

That same day, a man I never knew had a massive stroke. He Is 52 years old and a doctor.

What we had in common is Facebook.

I found out about my college friend's death on Facebook.

I found out about the doctor’s stroke because his wife is a REALTOR®, and a friend of mine told me (on Facebook), “You should reach out to this couple because of your strokes.”

I went to my friend's funeral. He had such a full life filled with friendship, family, talent, and helping other people through mentorship.

I felt guilty being there. I really did not know him well. I wish I had. But, it is too late.

At his funeral, someone recounted an time when Mark Boylan (my college friend) helped a young woman who was devastated. She said her “dream is shattered.” Mark said something like, you might need to change your dream. New opportunities will happen.

And then, Mark said “Dream sideways.” Change your course.

I think about Mark’s advice a lot. “Dream sideways.”

Dr. Timothy McHugh is a family medicine doctor in Meridian, Idaho and is affiliated with multiple hospitals in the area, including Saint Alphonsus Medical Center. 

I visited Dr. McHugh several times at Saint Alphonsus in Boise where he is recovering from his stroke. 3 1/2 years ago I had two strokes. I was in Saint Al's for 18 days. When I visited Tim, I looked around my old room. 

Our stories and backgrounds are similar in some respects: Highly educated and driven, politically active, supports many causes, never smoked, well read, about the same age, etc. 

Every stroke is different, and Tim’s stroke affected his left side. He is left handed. My right side is affected.

Now, he is starting his difficult journey of strokes and recovery. He and his wife have joined the very exclusive club that no one wants to join: Stroke survivors and caregivers. A shitty club with no rules.

However, he will recover. His life will never be the same. It will be different. Who knows what “different” will be for him?

After my strokes, going to the bathroom alone in my hospital room was a huge victory. A high profile powerful CEO, lobbyist, and elected official reduced to trying to wipe my own butt alone. But it was a start.

My dreams are different now. Dr. McHugh’s dreams are different now.

I am dreaming sideways. He will too. 

Monday, May 18, 2015

Grand Canyon and a Grand Wife!

Yesterday, my wife flew to the Grand Canyon with her mother and a sister. That is a red letter day for the Dunham's. This is the first time since my strokes 3 and a half years ago that I am alone with the responsibility to take care of our son.

My wife is a saint. When my strokes happened, she took charge. She handled every minute detail, keeping visitors at bay, juggling a scared 6 year old boy with little help, and dealing with a barrage of people wanting any and all news. 
Dunham's in the hospital: January 27, 2012

After my strokes and when I came home from the hospital after 18 days, she had to continue a hectic pace. Reassuring everyone including me that I would be OK even when she wasn't sure. She had to drive me to countless appointments and have a semblance of a "normal" life for our son.  

I cannot imagine what her life was like. People keep saying that I was so strong. SHE was the strong one. When people cried about me, SHE was the shoulder to cry on. It should have been the other way around.

She had to grapple with the miasma of emotions, financials, unknown passwords, insurmountable paperwork for disability and Social Security, helping with our son's homework and trying to figure out our life. 

Even now when she left for a well-deserved vacation, she had lists to help me. 

I am so grateful that my wife, Heather Saxton Dunham, had the courage to stick by me when I gave up on myself. My recovery or "my new normal" is because of her. 

Since my strokes, I have been appointed to be on the Board of the American Heart and Stroke Association. Because of my strokes, I have researched about caregivers.

Also, the National Stroke Association has some great tips about caregivers like my wonderful wife: 

Caregiving is often described as the most difficult job you never applied for. A stroke in the family can cause many shifts, whether it is relationship dynamics, finances, home modifications, or role changes. 

As a spouse, sibling, child, grandchild, or friend, you may be charged with new tasks, such as providing daily assistance and support, plus planning, and facilitating your loved one’s care. Because stroke is sudden and unexpected there is often little or no time to prepare. No matter when or how your role as a caregiver begins, it can be a challenging job that takes a physical, mental and emotional toll.

Caregivers play an important role throughout the post-stroke recovery process starting from day one. Caregivers can be a family member, friend, neighbor and/or a healthcare professional. We have developed numerous resources to help you on this new journey.

Caring for stroke survivors can cause high levels of emotional, mental, and physical stress for both the stroke survivor and caregiver. In addition to distress, disruption of employment and family life makes caregiving very challenging. Family caregivers can promote positive post-stroke recovery outcomes; however, they need to care for themselves as well.

Thursday, May 14, 2015

Heart Walk and strokes

On Saturday, May 16, 2015, I am walking in the Treasure Valley Heart Walk. I am walking because I can.
The fact that I can walk at all is a miracle considering I had two strokes in January of 2012. I had a torn carotid artery. The second stroke happened in the hospital, and it was massive.

I lost 20% of my brain. I lost all communication, have aphasia, apraxia, and I could not even remember my own name.

Yet, I was lucky.
Here are some statistics about strokes in the United States:
·                  Stroke kills almost 130,000 Americans each year— that’s 1 out of every 20 deaths.
·                  On average, one American dies from stroke every 4 minutes.
·                  Every year, more than 795,000 people in the United States have a stroke.
·                  About 610,000 of these are first or new strokes.
·                  About 185,00 strokes—nearly one of four—are in people who have had a previous stroke.
·                  About 87% of all strokes are ischemic strokes(, when blood flow to the brain is blocked. That is what I had.
·                  Stroke costs the United States an estimated $34 billion each year. This total includes the cost of health care services, medications to treat stroke, and missed days of work.
·                  Stroke is a leading cause of serious long-term disability.
After 18 days in the hospital, I started intense therapy at Saint Alphonsus Rehabilitation Services (STARS) including physical therapy, occupational rehabilitation, speech therapy. I did also did acupuncture, hypnotherapy and other vision therapy for reading and writing.
In three years, I had over 400 hours of therapy.
Ultimately, I resigned from my job as the Executive Director of the Associated General Contractors because I could not work because of the severity of my strokes.  
Nevertheless, I try to continue helping others. After the stroke, I successfully won reelection for the College of Western Idaho 10 after the strokes.
Last year's Heart Walk
In January of 2013, Governor Otter appointed me to serve on the Board of Idaho Housing and Finance Association and the Housing Company. I am also on the Board of the American Heart and Stroke Association. In December, 2012, I joined Risch-Pisca, Law & Policy, PLLC as a Legislative Consultant working part time.  
My passion is to educate people about strokes. I talk to students and participate in many stroke support groups. 
Life is precious but it is difficult when you have a stroke. I hate the term “my new normal,” but I am grateful that I can participate in events like the Heart Walk. Many stroke survivors cannot. 

Monday, April 20, 2015

Strokes and Dads

The other day, I was talking with my 10 year old son about my childhood. He is getting more mature. The nuances of life make him ask questions about my life and our ancestors.

He asked about when I was 10 years old like him. “Where did you live? What did you do every day? Who were your friends? What were your interests?”

He does have some information, but now he genuinely wants to know.

During the drive, I drove him past my dad’s mobile home.

“Your dad lived there?” he said surprised.  

“Yup,” I replied. 

Mark and Stan Dunham! New Mobile Home in 1971
When I was 8 years old, my parents got divorced. We were in Twin Falls, Idaho, but my dad moved to Boise after that because he get a job promotion. Your Grandma remarried and we lived in Twin Falls. However, my dad bought a mobile home. At the point, that was all he could afford.”

My son asked, “Did you see your dad much.”

I said, “After the divorce, I actually had a much closer relationship this my dad. I did not really know him because he worked all of the time. After the divorce and when Dad moved to Boise, I spent weekends with him a lot. I would ride the bus from Twin Falls to Boise. During the summer, I would spend several weeks in Boise with Dad even the he was working.”

“Wow!” our son exclaimed. “When you were alone, what did you do? Were you scared?”

Twin Falls, ID Bus Depot 
I laughed and said, “Well, there was no cable TV so I could watch three channels on a black and white TV. Or I read. A lot! During bus rides and when Dad was working, I read the ‘Hardy Boys.’ I also drew a lot. I would draw alien worlds or cityscapes. I could not go outside because of safety.”

Our son asked about “What did you eat? Could you use the microwave?”

I laughed again!  “Hmmmm. No! When I was a kid, no one had microwaves. The stone age!”   

Incredulous, he asked, “What did you eat?”

I smiled. “I learned to cook when I pretty small. Not just soup. Full blown dinners. I would make dinner for Dad! I loved to cook. Even now. After the strokes, I was so upset anyway, but I dismayed that I believed I could never cook again.”

He asked, “Where you lonely?”

“Good question,” I said. “Maybe? But I did not think about it. This was my life. I grew up really fast, but I am grateful. I had a sense of independence because I had responsibilities young in life. I did not know any difference.”

Our son raised his eyebrows and said, “Mmmm. Wow.” And then he changed the subject.  

I love that my son and I talk about mature things. Because of my strokes, he has grown up too fast also like me. I am proud of him. Sometimes I sense that he is also lonely like I was. He is funny, smart, and gregarious. But, sometimes when I watch him, I see him looking off in the distance. Sometimes he seems distant. Wonder what he in thinking? What will be his future given his parents and my medical issues?

In an old blog post, I referenced a comment about me. When I was 24 four years old, I friend of mine said “You have an old soul.” I am concerned that the apple doesn't fall far from the tree.

When my dad was dying, in the hospital, Dad said, “I worked too much. I thought that providing for my family was just making a good living. I realized later, being a good dad was not just about the money. It was being present. If you ever have a son, Mark, please be involved in every way.”

I think of my dad every day. When my son and I have discussions like my dad living in a “trailer,” I am happy that my dad and I became close in that 60' x 12' trailer.

Yes, I grew up fast like my son:  “Like father, like son.” Yet, I am thankful that my dad and I had such a special relationship where we talked about everything in our shared lives. Hope my relationship with my son will grow like with my dad and me.  

I think my strokes were a blessing disguise. I am a stay at home dad now. My dad would be proud. 

Monday, April 13, 2015

Aphasia? You can't be just a little bit pregnant!

After my strokes three years ago, I remember one of my many doctors and/or therapists saying something like “If you had to have a stroke, you are much better off than if it happened even a decade ago.”

There have been so many advances in stroke and aphasia rehab. Rather than stroke survivors not getting intense rehab, many stroke survivors did not have a lot of hope. Sit on the couch!

I do remember one doctors telling my family and me that my second stroke was so severe I probably could not do much. “Them are fightin’ words!”

In the 80% of my brain that is left, I continue with my recovery. The biggest problem is aphasia. I have blogged about it probably too much.

For example: When I wrote this word “probably”actually wrote “problely.” I knew it was not correct. In my head, I was trying to type “probably.” Nevertheless, I typed “problely.” The very useful Microsoft Word tool suggested potbelly” instead. 

So, I cheated and used “Siri” on my iPhone to get the exact word I wanted.

This is how I type my blog.  It is very time consuming but cathartic for me to express myself.  

Here is yet another definition from the “Aphasia Hope Foundation: Aphasia is an acquired language disorder that affects a person’s ability to communicate. Aphasia impairs the expression and understanding of language as well as reading and writing. Aphasia can occur suddenly, often the result of stroke, or it can occur over a period of time as a result of a brain tumor.”

I assumed that my aphasia would get better. However, I have read a series of “Tweets” that make me realize that there is no cure for aphasia. 

The “Aphasia Hope Foundation” wrote this: Can aphasia be cured? Thus far, no medicine, drugs, or surgery has been known to cure aphasia. Speech therapy is often provided to aphasic patients, but it does not guarantee a cure. Speech therapy is intended to help the patient utilize the remaining skills and learn complementary means of communication. Research and surgeries in the areas of brain repair and regeneration may provide for a ‘partial cure’ in the near future.”

Another group I follow on Twitter just posted this:  @AphasiaAnswers: There is no cure for aphasia, but with hard work and support, a person can return to a normal life.

I “Tweeted” this in my response: “I am tired of the term ‘my new normal.’ It's simply hard.”

Nevertheless, it seems to me that my aphasia is getting better. Perhaps, my aphasia is mild or maybe the INSENCE THEREAPY I have had for three years has MINIAMZE my CONSCUOUISE of my aphasia.

But, when I just typed this, this came out on my keyboard. What I really tried to type was this: “Perhaps, my aphasia is mild or maybe the INTENSE THERAPY I have had for three years has MINIMIZED my CONSCIOUSNESS of my aphasia.”

Like the old adage, “you can't be just a little bit pregnant.” I have aphasia. It seems that I have been dealing with it and somehow I have been compensating ever since.

The fact that I am doing this blog means I have the ability to “communicate” in various ways.

This short blog post took me over two hour to write/type. In the “old days” I would have written this in a couple of minutes.

I am most grateful that I can work around my aphasia. Or in my aphasia-speak, “gibberish.” Or from the Urban Dictionary:  "Bullshit: I blatant lie, a fragment untruth, an obvious fallacy." Or, my new normal.