Sunday, September 29, 2013

"I didn't sign up for this"

Another fine article written by Monica Vest Wheeler, and originally posted on her blog. She has given me permission to reproduce it here on this blog. Monica's blog is titled "Turning empathy into action" and can be reached using this link:  

She mostly writes about many different types of brain injuries and diseases, such as Alzheimer's, and occasionally writes one about stroke. She has published numerous books. According to her blog heading, Monica "...explores how we can lift ourselves and others by turning empathy into action … and the importance of the art of compassion in dealing with Alzheimer's, stroke, brain injuries and other life challenges." Monica is best known for her work on the Help ME Cope & Survive book series:

Monica is also a very active volunteer for Retreat & Refresh Stroke Camp and arguably our best camp photographer. 

I hope you enjoy her writing and visit her blog. And be sure to browse her archived articles, too.

by Monica Vest Wheeler

During four years of immersing myself in the topic of dementia and Alzheimer's, and writing and speaking about it, plus now serving as a caregiver, I've heard just about every scenario, crisis and triumph.

But there's one caregiver statement that really hits me now and then:

"I didn't sign up for this."

I was thinking about that one Sunday as I sweated in the July heat and watched my dad-in-law, Pepaw, fish. No, I didn't specifically sign up for this chore when I agreed to be his caregiver. I think it was in the fine print under "and all other duties as assigned."

There are a lot of things in life that I didn't sign up for. The first one that comes to mind is life itself. Nope, don't remember signing on any dotted line for this adventure, but I arrived and have tried to make the best of it.

I didn't sign up for my mom and dad, grandparents, aunts, uncles, cousins, etc. I got to know and love them and created my own place in the family. I learned to adjust and weave my way through a complex world that made no sense to a little girl.

I certainly didn't sign up for measles, chicken pox, bad tonsils, cuts that required stitches, and broken toes. If I had had any say, I would have requested summer weather year-round as a child so I could play outside every day.

I don't recall adding to my "want-to-do" list things like going to school, doing homework, being made fun of, fighting with so-called friends, and doing household chores. Those were the kind of things that came with this job of life.

I didn't sign up for rejection when the boy I had fallen for didn't like me in the same way in junior high, though he was quite amused by my lengthy and chatty letters. I didn't seek disappointment when I was not selected as a junior high drum major or my writing contest entries didn't win.

I did sign up for love when I met the right man and got married. However, I didn't sign up for arguments, financial headaches and the really hard work it takes to make a marriage work. But I've accepted those challenges along the way because I love this man.

I did sign up for motherhood when I gave birth to a robust boy. However, I must have missed all the fine print on the hours it demanded. Nowhere had I signed my name that I wanted to have more sleepless than restful nights those first couple of years. And I would have never agreed to chain myself to the pile of laundry a growing boy creates. But I waded through it and survived because I love my baby boy who's become a wonderful man.

I didn't sign up for the tragedy of war, high taxes, inept government and elected officials, potholes, road construction, mandatory insurance, and standing in line forever. I would have definitely voted down whoever created and implemented the phrase, "Life isn't fair."

I didn't sign up to be at my grandpa's side when he passed away, but I was there when it happened. I didn't sign up to attend the funerals of friends who died tragically, but I went to express my sympathy to their loved ones who had never asked for that kind of grief. I never signed up to lose my mom-in-law 10 years ago or my dear friend this year. I would have ripped and burned any paper that asked for my signature. I had signed up for love, but somebody made the rule that sometimes we lose the people we love. However, I wouldn't have missed the love for anything because the love really does last longer than the grief.

This spring, I signed up to be a caregiver for my father-in-law even though I knew Alzheimer's was slowly stealing his life. I didn't ask for the anger, accusations, threats and rudeness of recent weeks. I was not eagerly looking forward to having to help clean him when he soils himself, saving bushes from catching on fire when he flips his cigarettes into them, or having to hurry to his assisted living facility when they call about his erratic behavior.

I never asked for a broken heart, exhaustion, tears of frustration, loss of freedom and countless hours to do what I want to do, and being told, "You don't love me."

If caregivers saw every single thing that they'd have to do in caring for a loved with Alzheimer's or any catastrophic illness or injury, there would be few takers. Who asks for heartache, anger, pain and grief? I didn't, but I accept it because it's part of a higher calling and purpose in life, to show compassion to those we love … and to pray someone will show that same compassion when we need it in our final days.

No, I didn't sign up for "this," but no one is going to erase me now.

Written by Monica Vest Wheeler

Monica Vest Wheeler
Turning Empathy into Action
Find me now on Facebook
And on Twitter
Phone 1-309-682-8851
Phone toll-free 1-877-267-4640
Fax toll-free 1-877-636-0634
P.O. Box 276
Peoria, IL 61650-0276

Sunday, September 22, 2013

Wisconsin Retreat and Refresh Stroke Camp Weekend

by Sarah Christy

Hi, all,
We are very excited to be bringing the Retreat and Refresh Stroke Camp weekend to Wisconsin. A big THANK YOU to the organizers and champions of this event. I haven't been to Green Lakes Conference Center. The pictures on the website are awesome and looks like the perfect spot for a weekend of learning, growth, and fun. I hope you are ready to have a wonderful weekend volunteering with our campers, with a full camp we will all stay busy but, don't worry you will have great laughs, inspiring moments, and leave filled with great memories.

We are asking that all volunteers arrive by 11:30 on Friday morning (Oct. 4) for a lunch and volunteer orientation. Please let me know ASAP if you will not be there for lunch. During the meeting, we will review the schedule for the weekend and make some volunteer assignments. Following that, we will have a few more things to finish setting up before the campers start arriving at 2:30. If your availability for the weekend has changed since you filled out your volunteer application, please let me know that as well so we can give an accurate count for all meals and lodging.

Larry Schaer, Boyd Christy, and I will be directing camp. Deb Rossman and Cindy Barth will be running crafts, Chuck Jones will be our administrative/photography person, and Deb Shaw will be assisting wherever needed. Kyle & Lindsey Wilhelm will be our music therapists for the weekend.

Please let me know if you have any questions. Can't wait to meet you all!

Sarah Christy, Operations and Programming Coordinator for
Larry Schaer, Director
Boyd Christy, Operations


I attached a few documents that Sarah sent to the volunteers and campers for you to review so you can get a feel for what our camps are all about. 

General Notes:

-Remember campers, this is your weekend. We suggest you participate in any of the activities you like or as needed, just relax on the beautiful grounds.

-Resources, games, videos, books, and educational materials are available for your use this weekend.

-Meals are served promptly at listed meal times.

-Please keep track of children throughout the weekend.

-Camp quiet time is 10:00 pm to 7:00 am.

-Alcohol is forbidden at Green Lake Conference Center and there is no smoking allowed in any of the rooms or buildings on the grounds.

-Pets are not allowed at Green Lake Conference Center.

-Depending on your cell phone service provider, cell service may be spotty throughout the grounds.

-There is free WiFi in the Dining Hall and in the lobby of the building where we will be sleeping.

-There are no tv’s in the sleeping rooms; however, there are alarm clock radios.

-Pampering is available on Saturday, following the morning educational sessions. First come, first serve.

-Volunteers are here to serve you and make it an enjoyable and relaxing weekend, please do not hesitate to ask them if you need any assistance.

-There may be some last minute schedule changes.

-We will have the opportunity to fish and go for pontoon boat rides on Saturday. Bring your own fishing poles if you like, otherwise some will be provided. We have a temporary day fishing license that the stroke survivors can use to fish, and we will also have bait available. If you have your own fishing license, please bring it with you.

-As part of our “Meet Me at the Fair” weekend, we will be having a Grand Stand Show on Saturday night. If you have a special talent, joke, song, etc… that you would like to share with others, please come ready to perform!

-In case of emergency, no matter how small see any volunteer or use the phone to dial 911.

-Weekend Schedule-our itinerary for the weekend. 
The schedule is always subject to change, but that we do our best to adhere to it. Saturday afternoon will be especially busy with multiple offerings from which people can choose. We will have pontoon boat rides, fishing, a tram tour, scenic walks, crafts, indoor/outdoor games, golf cart rides, and more! We will need volunteers to help with each of these things (we will assign at camp). In addition, we will spend some time Saturdayafternoon setting up for the Carnival/Grand Stand Show that will be Saturday evening.

Meet Me at the Fair

Friday, October 4
2:30-4:00 p.m.          Registration, room assignment, refreshments, crafts
4:00-4:30 p.m.          Get acquainted drum circle
4:30-5:30 p.m.          Survivor and caregiver get acquainted break out groups
5:45 p.m.                   Dinner
7:00 p.m.                   Team poster making and team games
7:45 p.m.                   “State Fair” the movie, campfire, informal discussion, games, crafts, resource table, free time, etc…
9:45 p.m.                   Brief volunteer meeting
10:00 p.m.                 Camp quiet time
Saturday, October 5
7:00 a.m.                   Wake up
8:00 a.m.                   Breakfast
9:00 a.m.                   Coping Skills for Your New World, co-presented by campers Eric Sarno & Tracy Nelson           
10:00-12:00 p.m.     Experiential options: pampering (massages, Mary Kay facials, manicures, paraffin dip), fishing, Wii, crafts, golf cart rides around the grounds, outdoor games, tai chi experience with Seth, pharmacist, etc…  
12:00 p.m.                 Lunch
1:00 p.m.                   All camp photo
1:15 p.m.                   Brief volunteer meeting
1:15-4:30 p.m.          Rest/Free time: crafts, fishing, pontoon boat rides, Memory Lane walk (reflective walk) chair yoga video, games, Wii, golf carts rides around the grounds, etc…
2:30 p.m.                   Tram tour
4:00 p.m.                   Optional snack preparation demonstration
4:30-5:30 p.m.          Caregiver and Survivor break out groups
5:45 p.m.                   Dinner
7:00 p.m.                   Carnival games followed by Grand Stand Show
8:30 p.m.                   Free time: relax and chat, games, bingo, resource table, etc…
10:00 p.m.                 Camp quiet time
Sunday, October 6
7:00 a.m.                   Wake up
8:00 a.m.                   Breakfast                   
9:00-9:45 a.m.          Packing/Free time
9:45-10:30 a.m.        Worship service
10:30-11:15 a.m.     All camper competition
11:15-11:45 a.m.     Drum circle-celebration of the weekend
12:00 p.m.                 Lunch
1:00 p.m.                   Evaluation, photo and address distribution, good-byes, safe travels

-What to Bring to Camp

-Please note that there are no hair dryers in the rooms. Be sure to bring your own if you need it. If you have a few fishing poles, it would be very helpful if you would bring them as well. 

Bedding & Linens

Linens and towels are provided in all rooms. Rooms are hotel style with a private bathroom in each room. Handicapped rooms will be assigned based on greatest need.


Bring your own soap, shampoo, razors, lotion, personal grooming items (combs, brushes, hair spray, deodorant, toothbrush, toothpaste, etc.), etc… There are no hair dryers in the rooms, so be sure to bring your own if you will need it.


Bring all your medications (as listed on your health form) both prescription and non-prescription. The camp nurse will check your list upon arrival. Campers will be responsible for dispensing of their own medications unless monitoring is requested by the camp nurse. A refrigerator will be available for medications that need refrigerated.


Meals will be served buffet style in the dining hall. There is a salad bar at lunch and dinner. Each meal with have a couple of entrees from which you can choose. Volunteers will be happy to assist survivors through the buffet line. If you listed a special diet request on your registration form, this information has been relayed to the chef. They have asked that you please identify yourself to the buffet attendants when you go through the line and the attendant will let you know what foods are safe for you to eat.


Bring casual comfortable clothing adequate for Wisconsin weather in early October. Be sure to bring comfortable walking shoes if you plan to tour the grounds. It is suggested that you bring rain gear in case of rain.


You can bring small items for comfort in your room. There are no TV’s in the rooms, but there are alarm clock radios. Typically campers aren’t in their room much except for sleeping, but please feel free to make yourself comfortable.


If you have equipment or games you’d like to bring for your use or to share, please feel free to bring it along. We will have a chance to fish on Saturday, if you have your own fishing pole and would like to bring it, please do so. We have a temporary fishing license that the stroke survivors can use to fish with on Saturday, but if you have your own fishing license, please bring it. Please bring any adaptive equipment that is necessary for you to complete your activities of daily living.

Odds and Ends

Fly swatter, bug spray, sun screen, umbrella, flashlight, etc.

This year’s theme is Meet Me at the Fair. It will be a state fair/midway theme. We will have camp shirts for everyone. We hope it will be a fun and relaxing weekend for all! We look forward to meeting you!

Here is a detailed overview of the offerings that will be available for Saturday night of camp. It may be helpful for you to review them prior to your volunteer experience at camp. Thank you.

Evening Entertainment—The evening begins with folks entering the midway and receive their tickets to play the games and work the midway. Give each camper about 10 tickets, or so. The tickets are used for all the midway stations.

Along the Midway-Below are the games and activities that we will have. We will need volunteers to help at these midway stations as well as participate in the Grand Stand Show.

Lemon Shake Ups: For a ticket, campers and volunteers receive a lemonade drink in a souvenir cup. Cut lemon wedges and put in bottom of cups with ice. Some cups can be filled just before the campers arrive.

Cotton Candy—There is a cotton candy machine and sugar for use in making cotton candy. Whoever is doing this will want to try, just a little to get the feel for it. It is available for one ticket. Needs to be soaked and washed before packing away.

Plinko—Drop three chips and see your score

Sno-Cones—Sno Cone Machine is available to crush ice, scoop into cups and add syrup. Need soap and water for clean up. Cost for sno cone is one ticket.

Milk Bottle Toss—This is set up inside the box that contains the bottles and balls. Each person gets two balls for one ticket and tries to get all three bottles knocked down with the two balls. Prize awarded

Pick a Duck—Fill pool with enough water for the ducks to float. For one ticket, the person picks two ducks, add the numbers and award a prize accordingly.

Fish Bowl Toss—For one ticket, a person gets three ping pong balls to toss and see if they can “catch” a fish. Prize awarded accordingly. The fish bowls should sit inside a plastic crate on it’s side to keep balls from going all around the room.

Ring Toss—For one ticket, person gets rings to toss over the bottles. Score and award prizes accordingly.

Fortune Teller—Person sits down with the fortune teller and gets their fortune told. No prizes awarded, the fortune is their prize. We have sample fortunes.

Sunday, September 15, 2013

Gluten-Free Labeling Consumers Can Count On

by Chuck Jones

This information was copied from the US Food and Drug administration web site. A link to their website is included at the bottom of this article.

People with celiac disease can now have confidence in the meaning of a "gluten-free" label on foods.

The Food and Drug Administration (FDA) has issued a final rule that defines what characteristics a food has to have to bear a label that proclaims it "gluten- free." The rule also holds foods labeled "without gluten," "free of gluten," and "no gluten" to the same standard.

This rule has been eagerly awaited by advocates for people with celiac disease, who face potentially life-threatening illnesses if they eat the gluten found in breads, cakes, cereals, pastas and many other foods.

As one of the criteria for using the claim "gluten-free," FDA is setting a gluten limit of less than 20 ppm (parts per million) in foods that carry this label. This is the lowest level that can be consistently detected in foods using valid scientific analytical tools. Also, most people with celiac disease can tolerate foods with very small amounts of gluten. This level is consistent with those set by other countries and international bodies that set food safety standards.

"This standard 'gluten-free' definition will eliminate uncertainty about how food producers label their products and will assure people with celiac disease that foods labeled 'gluten-free' meet a clear standard established and enforced by FDA," says Michael R. Taylor, J.D., deputy FDA commissioner for foods and veterinary medicine.

Andrea Levario, executive director of the American Celiac Disease Alliance, notes that there is no cure for celiac disease and the only way to manage the disease is dietary—not eating gluten. Without a legal definition of "gluten-free," these consumers could never really be sure if their body would tolerate a food with that label, she adds.

"This is a tool that has been desperately needed," Levario says. "It keeps food safe for this population, gives them the tools they need to manage their health, and obviously has long-term benefits for them."

"Without proper food labeling regulation, celiac patients cannot know what the words 'gluten free' mean when they see them on a food label," says Allessio Fasano, M.D., director of the Center for Celiac Research at MassGeneral Hospital for Children, visiting professor of pediatrics at Harvard Medical School and member of the American Celiac Disease Alliance.

What Is Gluten?

Gluten means the proteins that occur naturally in wheat, rye, barley, and crossbreeds of these grains.

As many as 3 million people in the United States have celiac disease. It occurs when the body's natural defense system reacts to gluten by attacking the lining of the small intestine. Without a healthy intestinal lining, the body cannot absorb the nutrients it needs. Delayed growth and nutrient deficiencies can result and may lead to conditions such as anemia (a lower than normal number of red blood cells) and osteoporosis, a disease in which bones become fragile and more likely to break. Other serious health problems may include diabetes, autoimmune thyroid disease and intestinal cancers.

Before the rule there were no federal standards or definitions for the food industry to use in labeling products "gluten-free." An estimated 5 percent of foods currently labeled "gluten-free" contain 20 ppm or more of gluten.

How Does FDA Define 'Gluten-Free'?

In addition to limiting the unavoidable presence of gluten to less than 20 ppm, FDA will allow manufacturers to label a food "gluten-free" if the food does not contain any of the following: an ingredient that is any type of wheat, rye, barley, or crossbreeds of these grains an ingredient derived from these grains and that has not been processed to remove gluten an ingredient derived from these grains and that has been processed to remove gluten, if it results in the food containing 20 or more parts per million (ppm) gluten.

Foods such as bottled spring water, fruits and vegetables, and eggs can also be labeled "gluten-free" if they inherently don't have any gluten.

The regulation will be published Aug. 5, 2013 in the Federal Register, and manufacturers have one year from the publication date to bring their labels into compliance. Taylor says he believes many foods labeled "gluten free" may be able to meet the new federal definition already. However, he adds, "We encourage the food industry to come into compliance with the rule as soon as possible."

Under the new rule, a food label that bears the claim "gluten-free," as well as the claims "free of gluten," "without gluten," and "no gluten," but fails to meet the requirements of the rule would be considered misbranded and subject to regulatory action by FDA.

Those who need to know with certainty that a food is gluten-free are heralding the arrival of this definition. "This is a huge victory for people with celiac disease," says Levario. "In fact, that's the understatement of the year."

Says Taylor, "FDA's 'gluten-free' definition will help people make food choices with confidence."

This article appears on FDA's Consumer Updates page, which features the latest on all FDA-regulated products.

August 2, 2013

For more information on gluten-free visit:

Sunday, September 8, 2013

A Chance To Be Normal: Stroke Camp offers respite, renewal to survivors and caregivers

This year, August 16-18 2013, I helped with Retreat & Refresh Stroke Camp at the Carol Joy Holling Conference and Retreat Center in Ashland, near Lincoln, Nebraska. We were visited by Erin Andersen, news reporter, and Francis Gardler, photographer, from the Lincoln Journal Star. Following is the article Erin wrote about our camp. I have inserted some of the photos I took at this camp.

 By ERIN ANDERSEN / Lincoln Journal Star
 People are always there in the beginning. To help. To talk. To laugh. To cry.

But as time passes, the visits decrease. It’s hard to find things to talk about. Your life is so different now. Nothing is the same ... and never will be.

After a stroke it’s the isolation that is hard to deal with, said Kathy Doak, whose husband, Mark Doak -- a former Nebraska football player and 1975 sixth-round draft pick of the NFL team in Washington -- suffered one in 2011.

You don’t do the things you used to do. Heck, you don’t even leave the house. It’s too much work. You’re so exhausted -- even picking up the phone to say "Hi" is overwhelming, Kathy Doak said.

So when stroke survivors and their caregivers -- typically a spouse, a child or a sibling -- are invited to attend the annual Retreat & Refresh Stroke Camp, their initial reaction is somewhere along the lines of: Are you nuts?

     Goldie (caregiver)                     Jackie (survivor) 

That is exactly what Goldie and Jackie Goldsmith of Lincoln were thinking when their doctors, nurses and therapists kept telling them that they “really needed to go to Stroke Camp.”

“We don’t get out and do a lot of things anymore -- because we can’t,” said Jackie, who suffered a stroke in November 2010.

“We kind of had to be talked into it (camp),” she said of their first camp experience in 2012. “Now we look forward to it every year. We meet some of the same people and meet some new people. We laugh a lot. It’s good medicine for you.”

Retreat & Refresh Stroke Camp -- as the name implies -- is a 48-hour summer camp complete with camp songs and slogans, arts and crafts, games, bonfires, fishing, canoeing and paddle boating.

“Survivors and caregivers have that perception: we can’t do this. That going to camp is like climbing Mount Everest,” camp director Larry Schaer said. “They have a perception of what they can’t do -- not what they can do.”

The camp is housed here at the Swanson Center
The Lincoln Stroke Partnership -- a collaboration among Bryan Medical Center, Saint Elizabeth Regional Medical Center and Madonna Rehabilitation Hospital -- and Retreat & Refresh Stroke Camp host the two-day event at Carol Joy Holling Conference and Retreat Center in Ashland.

This year’s camp, held Aug. 16-18, included 20 couples -- 10 stroke survivors and their caregivers -- 15 volunteers and five camp staffers.

Volunteers take care of everything, so caregivers truly have a weekend respite -- a weekend with massages, manicures, pedicures, facials and other spa-style pampering, along with campfire songs, stories and skits. A weekend where they don’t have cut their survivor’s food, help them use the bathroom, keep a watchful eye every second.
“Just to see the people and be able to enjoy normalcy and have fun with the survivor is wonderful,” Kathy Doak said.

A loving partnership turns into a full-time role of nurse, therapist, maid, cook, custodian and family CEO.

“When volunteers take over all the duties, when they take the load off the caregiver, it is just so relaxing," Kathy Doak said. "The stress reduction from that weekend is awesome.”

They have fun like they did B.S. -- Before Stroke -- before they were known as survivors and caregivers.

“Most events after stroke are not joyous," Mark Doak said. "But Stroke Camp is a celebration of life.”


Camp begins in a circle. In the middle are drums, tambourines and other music makers. Jenny Denk, a music therapist, gives each camper an instrument. Returnees know exactly what they want. Newcomers are wary.

But in minutes they forget to be shy, banging and shaking out beats as they introduce themselves, and call out their favorite fair food (in honor of this year’s camp theme: Meet Me at the Fair).

The ice is broken.

Survivors and caregivers divide into separate groups. Another chance to get acquainted -- this time with others living the same trials, tribulations, heartbreak and exasperation.

They share top of the mountain and bottom of the valley experiences.

Stroke survivors let go of some of the frustration, the anger, the resentment and self loathing. They hate being a burden.

“Everybody wants as close to a regular life as they had prior to the stroke,” Mark Doak said. “They want to be independent. They want to do things for themselves; not bother their spouse.”

Abilities they used to take for granted: getting a cup of coffee, making a grilled cheese sandwich, taking a shower, wiping your butt and killing the snake that slithers onto your front walkway in front of your wife and dog …

“All those things husbands just do -- now it has to be done for me,” Mark Doak said. “There has to be some anger for the caregiver. Some thought of: I didn’t sign up for this.”

Sentiments are the same for the survivor, but for different reasons.

“She is my keeper. I’m in the cage” Mark Doak said.

Kathy chokes on a laugh: “But what a nice cage it is!”

“I rattle the cage doors frequently and they never get open,” Mark said, not so subtly referring to his desire to drive again.

“I would gladly give the keys back if it was safe,” Kathy replied.

Across the hallway caregivers reluctantly put into words the tornado of emotions they have fought so hard to control -- and ignore.

It feels like you’re:

* A rubber band being stretched more and more

* A piece in a jigsaw puzzle, continually trying to figure out how it fits.

* A paper clip struggling to hold it all together all by yourself.

“A marble, ‘cuz I feel so much like I’m losing mine,” a few say.

Kathy Doak remembers her first stroke camp in 2012 and hearing the stories of returning caregivers.

“I thought: I’ll never get there. I’ll never get to the level of assurity that it will get better,” she recalled. “Everyone was so very encouraging. It was heartwarming.

One year later, Kathy Doak is now reassuring newcomers: It is OK to vent. It is good to laugh and cry, and glom on to the faith that this “new normal” can get better over time.

“Stroke camp is the ultimate release for feeling normal again,” Mark Doak said. “Stroke Camp is a safe place to break down the wall that everybody puts up and just go for it.”

* * *

Marylee and John Nunley of Peoria, Ill., held the first Retreat & Refresh Stroke Camp in 2001. The couple had always camped. Then John suffered a stroke. Marylee took care of him 24/7. A weekend off was an impossibility -- never mind the the prospect of camping again.

What if … Marylee wondered.

She hosted the first-ever camp inviting local fellow stroke survivors and their caregivers to a carefree weekend where disabilities and brain injuries were handled with such ease, it was like the old days -- Before Stroke. Where caregivers were the ones being cared for, pampered and treated like the heroes they are.

“That first camp was such a success that the next summer they held two camps, and the year after they held four camps,” Schaer said.

The camp focus is four-fold: educate, socialize, relax and support.

The 2013 camp at Carol Joy Holling Retreat Center was Lincoln’s third; and the 77th overall for Retreat & Refresh Stroke Camps held throughout the United States. All told, there will be 17 or 18 camps throughout the country this year. Next year, that number no doubt will climb to at least 20 -- odds are Lincoln will hold two camps. This year, six families were on waiting lists in case space opened up.

Stroke Camp is costly to put on, Kathy Doak said. All but a few thousand of the $20,000 price tag is funded by donations and fundraising. Stroke families are asked to pay $100 per person -- for some that is fantasy, which is why hopes are the Lincoln Stroke Partnership might raise enough money to provide camp scholarships.


Simply put, a stroke is a brain injury.

“A brain attack,” Kathy Doak said. “The effects are not just physical. ... Every part of your being is affected.”

“Your life and everybody else's is turned upside down,” Mark Doak added. “A stroke is forever.”

Which is why strokes are so isolating.

“There are 7 million people out there with strokes -- without having any connections and support other than family,” Schaer said. “Camp is a critical element of support for survivors.”

Bob Becker has attended all three Lincoln Stroke Camps.

He had his stroke April 1, 2010.

“A bleeder on my left side,” he said. An avid fan of television medical shows, Becker said he realized quickly the numbness and clumsiness in his right hand was a symptom of a stroke.

“Thank goodness for cell phones,” he said, noting that a freak outage had left landlines useless that day in Lincoln.

Becker called a family member: I think I’m having a stroke. When the family member started asking questions, Becker stopped him: “If you keep talking to me I might not be alive in a couple of minutes.”

An ambulance arrived a short-time later.

“By the time I got to the hospital I had slurred speech and was not able to use my right hand or leg.”

The recovery has been long and slow. But with persistence and perseverance progress is made.

“Watching people gives me hope,” Becker said, recalling the camper whose stroke left him unable to speak for five years. Last year, he got up and told a joke at camp. Fellow campers were laughing and crying at the same time.

In the 800,000 stories of stroke each year, Becker’s awareness is unique, Schaer said.

“Only 20 percent of people know the signs and symptoms of stroke," he said. “Eighty percent have no idea of the signs and the urgency of the matter.

“Only 20 percent of people having a stroke make it to the hospital within a three-hour window to receive TPA (a clot busting drug), resulting in minimal to no deficits.

“With 800,000 people a year having a stroke and with only 20 percent of that population getting to the hospital in time, that means 80 percent are losing a lifetime opportunity. Once that window of opportunity is missed, you don’t get a second chance.”

The symptoms sound straightforward:

* Sudden numbness or weakness in the face, arm or leg, especially on one side.

* Sudden confusion, trouble speaking or understanding.

* Sudden trouble seeing in one or both eyes

* Sudden trouble walking, dizziness, loss of balance or coordination.

But most people ignore the symptoms -- reasoning they are tired, stressed or getting sick. Many take an aspirin and a nap hoping it will just go away, Schaer said.

And if they are having a mini-stroke, a TIA (Transient Ischemic Attack), it will go away as suddenly as it appeared. But it will come back -- with a vengeance. Up to 40 percent of all people who experience a TIA will go on to have an actual stroke in the next 12 months. Nearly half, will have a stroke within two days of a TIA.

“Lack of understanding is a major issue. If we could fix that, hundreds of thousands of people could have minimal effects,” Schaer said.

Chuck Jones, administrative assistant at Stroke Camp, lost a cousin three weeks ago to stroke.

It started with a mini-stroke. Her words suddenly became garbled. Well-meaning friends told her to relax. She did. Her speech returned to normal. The next day she had a terrible headache. She took aspirin and a nap, and declared upon waking that she never felt better, Jones said.

“The third day she suffered a massive stroke and died that night.”

* * *

Stories of delay and denial are the bane of stroke survivors and families.

Nearly every survivor will tell you that whether they knew what was happening or weren’t quite sure -- they all held on to the belief it could not happen to them.

And sometimes stroke symptoms are not all that obvious -- at least not enough to feel like you need to head to the emergency room.

Jackie Goldsmith says hers began with her leg. Her husband noticed she was walking funny. Over the next two days, she relied on the strong stable arm of her grandson as she shopped.

“I was still walking, but it was like I was drunk or drugged or something,” Jackie recalled.

Her husband suggested they call the doctor. He ordered an MRI. Physically she was reeling a bit as she attempted to walk out of the medical center. They sent her straight to the hospital.

“After that I couldn’t stand,” Jackie recalled.

Lincoln’s Larry and Lori Obrist are both stroke survivors and caregivers. Larry had his stroke December 2005; Lori’s was March 2010.

“I pretty much knew and feared I was having a stroke, but I desperately did not want to believe it was happening to me,” said Larry Obrist, a retired mental health social worker at the Grand Island Veterans Hospital. “It just seemed like my leg was going to sleep.”

Back in 2005, administering clot busting TPA was not standard protocol -- especially if your stroke score was low, like his.

“I could walk, and talk; I had no vision or speech problem, but terrible weakness on my left side,” he said.

Today, he would have been considered a prime candidate for TPA.

To look at Obrist, you would think he has suffered no lasting effects. He knows otherwise.

His ankle gets spastic, his foot swells with fluid, his balance and agility are not dependable.

Lori Obrist’s stroke was different. A nurse, she didn’t see a need to rush to the hospital She had a TIA. Miscommunication and lack of understanding as to what was happening, resulted in her having a stroke. Larry Obrist can’t hide his frustration. He takes every opportunity to tell people about stroke.

“My two cents: Take the stroke education that you have learned and take it to your communities and families. If we can prevent one person from having a stroke (it) will have done enough. ... Do not let your family or the doctor take a TIA for granted.”

All things considered, Larry and Lori Obrist are lucky. But they could have been much luckier, if they had had been proactive and aggressive, he said.

Paul Eide and his wife, Bev Linder Eide, are relative newcomers to the world of stroke. This was their first camp.

Married just 10 years, both have buried their first spouse.

On June 19, 2012, Paul went in for shoulder surgery. Four days later he had a stroke -- a clot in his carotid artery.

The stroke left Paul with physical disabilities. But for Bev the biggest adjustment is emotional.

“His personality has changed,” she confided.

That’s a very common result of strokes.

Kathy Doak states it matter of factly: “Mark lost his filter after the stroke.”

Mark Doak had his stroke at 11:11 a.m. Nov. 11, 2011.

“I rode in ambulance 111, and was put in room 11 at the hospital,” he said.

“Guess what’s not my lucky number,” Kathy quipped.

The couple was on vacation in Florida when Mark fell over a plastic lawn chair. He figured he tripped. Kathy knew immediately it was something more.

“His speech was slurred. He couldn’t sit up,” she said.

It was about a year before he could really sit up on his own.

“I was a lump. Now I’m a sugar lump,” he joked.

Mark has always been gregarious and outspoken. He fills a room -- and we’re not just referring to his 6-foot-4, 300-pound frame.

While in therapy at Madonna he earned the name: “Captain Inappropriate.”

“I apologized for him a lot,” Kathy said.

These days he’s not quite as inappropriate but his humor teeters on the edge of risque. He likes to talk, and is not as attuned to social norms as he was Before Stroke. But his personality is a boon to fellow survivors -- he gets them out of their shell, gets them playing bingo, watching movies, living again. Mark and Kathy say survivors and caregivers need more than just one Stroke Camp a year.

Lincoln’s Joann Keller concurred. Camp gives you perspective, she said.

“When I went to Stroke Camp I felt like ‘Oh, I have it so bad.’ I felt so sorry for myself,” she said, referring to herself and her husband, Arnold Keller, who had his stroke in 2004. “Then I see other people and hear their stories and realize I don’t have it as bad as I thought. We are sitting pretty good.

“It is the most enlightening best time. It is probably one of the most most rewarding events I partake in. In 48 hours, you become really wonderful friends. You do not care to leave. You feel like you have actually been loved and the love is very generous.

“It is so rewarding. I feel like I am in a good place today because it gave me a good shot.”

Reach Erin Andersen at 402-473-7217 or


Sunday, September 1, 2013

How to Conquer the World With One Hand...

Read an excerpt from

How to Conquer the World With One Hand...
And an Attitude

If you wish to read the whole book, it is available here:

The link above will take you to the Amazon site where you can get the book for the best price in paperback, Kindle and audio CD format.

Prologue and Chapter One
by Paul Berger & Stephanie Mensh


I was 36 and had everything I wanted: a rewarding career, a happy marriage and a promising future. My investments were doing well, and I’d just bought a new car. I owned a house and was saving for a bigger one. I was in control of my life and, if I took a rare moment to think about it, I felt like a conqueror.

I was a type-A personality, which I knew could be bad for my health. My father already had suffered two heart attacks, and I didn’t want to follow in his footsteps. So I watched my weight, was careful about what I ate and worked out at the gym three or four times a week. I was in great shape and felt energetic and powerful.

My story begins on December 30, 1985. In just two days, it would be the New Year, and I was eagerly anticipating a major change in my career.

At that time, I was working for the Washington, D.C., city government. I had a master’s degree in Urban Affairs and Policy Analysis and had a position in the city’s real estate development department. My job was to facilitate the construction of downtown projects, making it easier for buildings to get built and open their doors to the public. I had chosen to work for the government because I wanted to help build a better world. I liked driving around town and seeing the results of my work. Lately, however, I had become frustrated with the city bureaucracy and had decided to look for a new job.

By going to school at night, I had recently earned an MBA in Finance from a college in Arlington, Virginia, where my wife, Stephanie, and I lived. With this added credential, I was looking at jobs in either finance or real estate.

I’d had several promising interviews and had just been asked by one company to return for a follow-up meeting after New Year’s.

So, on December 30th, when Stephanie dropped me off at the gym and went shopping for a dress to wear on New Year’s Eve, I knew my life was about to change. What I didn’t know was that it would change as dramatically as it did....

Part 1: Surviving the Crisis
The Explosion in My Head

I’d finished jogging around the track and had just started lifting weights when, all of a sudden, I got a terrible headache. I went over to the gym attendant and asked for an aspirin.

"Sorry," she said. "We’re not allowed to give out anything, not even aspirin. What’s wrong?"

"I have the worst headache." The pain already was so bad that I was starting to see double.

"I can call an ambulance for you," she offered, "but that’s all I can do."

Why not call an ambulance? I thought. If it turns out to be nothing, I’ll be a little embarrassed; but this feels really bad, and I should check it out. "Okay," I decided, "call an ambulance."

I started toward the locker room to change out of my jogging shorts. But pain and dizziness overwhelmed me, and I barely staggered to a table and chair a few feet away. I landed in the chair, then lay my head on the table. I don’t know how long I sat slumped like that; my sense of time was becoming distorted.

"Sir, how are you?" the paramedic asked.

"I don’t feel so good." I told him about my headache.

"Okay, let me help you onto the gurney."

"Can you take me to -- Hospital?" I wanted to go there because it was affiliated with my HMO and had a very good reputation. But it was located across the Potomac River, in Washington, D.C.

"No. We have to take you to the nearest hospital." This turned out to be a small, community hospital.

Later I wondered if my story might have unfolded differently, had I been taken directly to the hospital I’d requested.

The paramedic wrapped a blanket around me and wheeled me out. It seemed like miles before we reached the ambulance and even longer before we arrived at the hospital. By the time I got to the emergency room, I thought my head was going to explode.

Suddenly I remembered that Stephanie would be on her way to the gym to pick me up. The paramedic called the gym and found her already there.

"Hello, Mrs. Berger? I’m here with Paul, in the emergency room. He wants you to go into his locker and bring his clothes, wallet and coat. He left everything behind when we brought him here."

Then he turned to me and said, "She wants to know the combination to your lock."

I rattled off the numbers, and he repeated them into the phone.

"She says she’ll be here in a few minutes."

The emergency room was quiet that evening. I lay on a bed in a dark, curtained-off area, waiting for Stephanie to arrive with my things. The pain in my skull was so intense that I had no idea how much time had passed before she finally appeared. She told me it was ten p.m. and explained that I’d given her the wrong combination to my locker. The staff at the gym had to break the lock so she could get my things.

At that point, the neurosurgeon on call showed up.

"Can you describe what happened?" he asked.

Gritting my teeth from the pain, I told him everything I remembered.

"Do you suffer from migraines?"


"Are you having double vision?"


The neurosurgeon raised an eyebrow.

"Do you know what day it is?"

I think I answered correctly.

"I’m going to order a CT scan," he said. "Someone will be down in a few minutes to take you there, Mr. Berger."

By the time the CT scan results were available, it was near midnight. The neurosurgeon admitted me to the intensive care unit and ordered painkillers and other medication.

He told me that a blood vessel in my brain had ruptured, and blood was flooding my brain, causing the pain. He said that this was very serious; in fifty percent of the cases, the person dies. He said that I was lucky I had come to the hospital right away, and that he thought I would be okay.

He asked me how old I was. Stephanie answered, "Thirty-six."

"Me, too," he said. "But for the grace of God, this could be me," he told us. "This can happen to anyone, at any age."

Luckily for us, Stephanie worked for a national association representing surgeons. The next morning, before returning to the hospital, she called her boss, Matty, to ask for her help. Matty had many high-level connections within the medical community. Stephanie asked her to check the neurosurgeon’s credentials and find out more about my diagnosis, a "subarachnoid ruptured aneurysm on the carotid artery."

When Stephanie arrived at the hospital, I was still in a great deal of pain. My area of the ICU was darkened. Bright lights, loud noises or other intense stimulation could cause further bleeding, the neurosurgeon had said.

"How do you feel?" Stephanie asked.

"Okay," I answered automatically. "No. Not okay. My head still hurts."

I stared into the dark room for a few minutes. Stephanie said nothing, trying to take in all of the monitoring equipment hooked up to me. I breathed heavily, to fight back the pain.

"You have to get my health insurance card. You have my wallet. And call them. It’s an HMO. You have to call them and tell them I’m here. They have to know for the insurance coverage."

Then the neurosurgeon came into the room.

"I have some papers for you to sign. You must have an angiogram so we can locate the aneurysm. When we locate it, we will be able to operate right away. It is a radiological test. We inject dye into your leg, then trace the blood flow with x-rays through the vessels up in the neck and head.

"I’ll probably transfer you to a university hospital for the surgery. They will know better how to care for you there for this situation. The literature shows that operating within seventy-two hours for patients like you, Mr. Berger, have the very best outcome."

He gave me a clipboard with the informed consent release papers for the test.

The very best outcome...Seventy-two hours... The words echoed in my mind. I was sure I would have the best outcome; I always did well on tests. I figured everything would be back to normal in a few days, and I’d forget the whole incident like a bad dream.

About an hour later, I was taken to the radiology department for the angiogram, and Stephanie headed for the telephone. She called Matty, who reported that the neurosurgeon was good. But she added that everyone had told her I should be moved immediately to a university hospital. She gave Stephanie the names of the top neurosurgeons at the university hospitals in the Washington, D.C., area, including the one that was partnered with my HMO. Stephanie had already called my primary care physician, Dr. Lanman, and this waswhere he was having me transferred.

Matty also said that the experts advised that the angiogram be performed by a radiologist who specialized in neurologic imaging. I was undergoing the test with a general radiologist. Not a good omen.

Stephanie then called the neurosurgeon recommended by Matty’s contacts, Dr. King, at the hospital to which I was being transferred. She asked him to take my case, and he readily agreed.

Next, she canceled our New Year’s Eve plans. Our friends Jerry and Marie were supposed to come down from my hometown of Philadelphia to be with us. We’d also had tickets to fly to St. Martin the next weekend; perhaps Jerry and Marie would go on our trip instead.

Finally, Stephanie called my office and tried to explain what was happening. She said that the call wasn’t easy for her. We had many more questions than answers to convey at that point.

Stephanie and I spent New Year’s Eve in the ICU. The staff was kind enough to let her stay as long as she wished.

When I was single and didn’t have a date or a party on New Year’s Eve, I felt like the world was going to end. This time, although I had my wife at my side, my world as I knew it had ended.

The next morning, after Stephanie had returned to the hospital, the neurosurgeon came by on his rounds.

"I examined the angiogram," he said sadly. "I know exactly where the aneurysm should be, but I cannot find it on the film. It is possible that the bleeding is obscuring the aneurysm," he huffed.

"If I could see where it was, I would operate immediately. In Europe, they would let me operate and find the aneurysm during surgery. But in the United States, they do not allow it; the threat of malpractice. Even though I know where it should be, and you should have this surgery as soon as possible."

This was a terrible blow. Matty’s warning that a specialist should perform the angiogram echoed loudly in my mind.

"Is it the quality of the angiogram? It wasn’t done well by the general radiologist, was it?" Stephanie asked, trying to stay calm.

"I don’t know," he replied. "There is too much blood to see where an aneurysm might be."

"I’ve talked to Paul’s HMO," Stephanie said. "They’re transferring him to the university hospital this morning."

"That’s okay," he said graciously. "I will be happy to provide them consultation on Mr. Berger’s case."

When the ambulance driver came, Stephanie told him no sirens; a slow, quiet, easy ride. She would follow in her car. My head still hurt, and I was glad to be leaving. I was sure that Dr. Lanman and Dr. King would get moving on my case, solve the pain, and get me back on my feet.

Soon after I was admitted to the university hospital’s neurosurgery floor, Dr. Lanman came to see me. He became our go-between with the other health care professionals and served as our "translator." He explained all the neurosurgery terms and described what we should expect. He was my age, energetic and concerned for me. I often have thought that I received a little extra effort because I was the same age as most of the doctors and nurses. Were they also thinking that "there but for the grace of God go I?"

For the next few days, I stayed in bed. The hospital room was dark, and I wasn’t allowed a TV. The doctors wanted to limit any stimulation that might cause additional bleeding in my brain. I had no appetite, had trouble urinating and continued to suffer a constant, throbbing pain in my skull, despite the medication and isolation. I could still read, write and talk, but most of the time I said little.

Day and night, Stephanie sat near me in the dark room, watching me; watching my blood pressure monitor registering near 200 over 150 (normal is 120 over 80), my heartbeat slightly arrhythmic. I could see that she was overwhelmed with concern. But neither of us realized how close to death I was. We were just too young to understand the meaning of death—or life.

"Paul, I have to call your parents. What should I say?" Stephanie asked later that week.

"Tell them I’m okay. Tell them not to come. They should enjoy their vacation in Florida. It’s too cold and icy here. Besides, it might be too much stress for Dad."

Stephanie called. "I want to talk to him," my mother insisted.

"They’re not allowing a phone in his room just yet," Stephanie said, not telling my mother that the loud ringing could trigger more bleeding.

"Stephanie, anytime anything is involved with the brain, it is really serious," Mom said. "Should we come to Washington?"

"No. Let’s see how these tests go for the next few days. Paul just doesn’t feel he’s sick enough."

Stephanie promised to call every day with an update on my progress. But mothers always have ways to find out about their children. That evening, when Stephanie returned home, the phone was ringing. It was Jonathan, my high school friend, a doctor. His parents are good friends of my parents. My mother had called him in Philadelphia and urged him to contact Stephanie.

Stephanie repeated all the medical terms, tests and information she had gathered in the past few days. "They just can’t seem to find the aneurysm. And Dr. King now isn’t even sure it is an aneurysm. He said he can’t see anything on the angiogram; there’s too much blood. Please don’t say anything about this to Paul’s parents. We don’t want them to worry."

"Well, if it is an aneurysm," Jonathan said, "the conventional wisdom is that whatever functions the person has right after the bleeding is where he’ll be, or less. For example, if Paul could not talk or write now," he said, "there would be little hope that he would regain that after the surgery to close the aneurysm. Did they say anything about that?"

"I don’t think so, and Paul is talking and reading and writing. He can still walk, although they aren’t letting him out of bed."

"Well, that sounds positive. Call me if you need anything."

The next day, Dr. Lanman told us about some new equipment that had been delivered to my room. The bleeding in my brain had caused swelling and pressure. Sometimes, to alleviate the pressure, the neurosurgeons drill little holes in the skull. The equipment was there if they needed to do so.

This was a blow.

"I thought Paul was getting better," Stephanie said weakly.

"Well, let’s hope they don’t need to use it," he said, trying to be comforting.

Stephanie made some notes in a little pocket notebook. There was so much information and new terminology that keeping notes had become her only way to cope. Every few hours, in my dark room, she squinted to write down my blood pressure readings, medications and comments from the nurses or doctors. She had started to collect important phone numbers, too, including Dr. Lanman’s direct line, which she later used more than once.

Finally, a full week had passed since my headache had started. The pain had dulled somewhat, either from the medication, reduced swelling or just having lived with it for so long.

Dr. King ordered a second angiogram. He explained that, because my condition appeared to have stabilized, enough blood should have cleared to see where the bleeding had originated and to make a decision on the next step in treatment.

This time, the test was performed by a neuroradiologist, a specialist in interpreting images of the brain. After a few minutes, he located the aneurysm. He grumbled, then said, "Dr. King will take a look at this and discuss your options." I didn’t want to know any more.

When I returned to my room, Stephanie was waiting. I told her what the neuroradiologist had said, but I didn’t feel like talking about it. I knew that Stephanie wanted me to have surgery. She wanted the doctors to perform their medical miracles and make me completely well again. I didn’t feel the same way. I didn’t want surgery; I didn’t feel that sick. And deep inside, I was too scared to breathe.

I knew things were bad when Dr. King sat down at my bedside to talk to me about the angiogram. "Now that we know where it is, I can see the aneurysm on the first film," he said. "We have to operate."

"What other choices do I have?"

"If we don’t operate, you could die from the bleeding."

"Can I die from the surgery?"

"You can die from the roof of the grocery store falling on your head. In this institution, under my care, no one dies from this operation."

"I just don’t know."

"How soon would you schedule the operation?" Stephanie asked. "His family wants to come in to be with us for this."

"’s Thursday.... Paul is stable, getting a little better.... We could schedule it for Monday." Then he stressed, "Paul, you have to have this surgery."

"Tell me a little more about what you do," I said, trying to concentrate. My mind was a blur, grogged out from the medication and now this heart-stopping news.

"This is not a difficult operation. It’s our bread-and-butter procedure," he explained, trying to soften his clipped manner. "An aneurysm is a bump on your carotid artery. Yours is about the size of a large marble, and it’s well-defined. It’s something you’ve probably had since birth, and it could have burst at any time; last week, or fifty years from now picking up a bag of groceries, or any sudden physical exertion, like lifting weights. We open the skull, reach down and put a platinum fastener over the aneurysm. If nothing goes wrong, you should be able to leave the hospital in a week or so, then recover at home forabout a month or two."

"What do you think?" I asked Stephanie, stalling for time, trying to clear my thoughts so I could reason this out.

"I think you should have the surgery. I don’t see that there is any choice. If Dr. King doesn’t operate, the aneurysm can continue to bleed and...."

"Okay." I felt beaten down and frustrated by this total loss of control over my life. This feeling would soon become an unwelcome constant.

According to Stephanie’s notes, Dr. King also told her I could have a stroke, become paralyzed, lose my speech, not work again. But she didn’t really hear or believe him. She simply assumed I would do well and that our lives soon would return to normal.

Stephanie didn’t get back to the hospital until late the following day. I missed her. I was bored in the dark, with no TV, no light to read by, no concentration to think.

After going to her office to thank Matty for her support, Stephanie had gone to a medical library to read everything she could find and understand about aneurysms, making copious entries in her pocket notebook and adding to her list of questions for the doctors. Among other things, she learned that the platinum clip implanted in my brain to seal the aneurysm wouldn’t set off a metal detector or be disturbed by cabin pressure on an airplane. This was good news, because we traveled to Europe at least once a year, and she was sure we’d be traveling again in the near future.

Meanwhile, my blood pressure continued to rise. To lower it, I was transferred to the ICU for intravenous medication.

As news of my impending surgery spread, I was visited by a parade of family, friends and coworkers. Even the head of my department, about five levels above me in the bureaucratic hierarchy, came to see me. This was so unexpected that I got scared.

"Why are they doing this? Am I really this sick?" I was angry and confused. Stephanie didn’t know what to say.

My parents flew in from Florida, and my brother, Stanley, caught a flight from San Francisco, where he was living. They planned to stay just a few days, based on Stephanie’s upbeat assessment of my condition. They eventually stayed nearly two weeks, waiting until they were sure I would survive.

I didn’t like being the object of all this attention. I was tormented by the unrelenting painin my head, fearful of the upcoming surgery and frustrated by not being allowed out of bed. I reacted by being defiant. Late that night, on the eve of my surgery, I begged my nurse to help me get out of bed.

I wanted to sit on the commode, I said. Once in the bathroom, I sat there, trying to remember what to do. Suddenly, my head exploded again.

I tried to call for the nurse, but I don’t know if any words came out. I don’t know how much time passed, only that I was back in hell.

The next thing I knew, I was undergoing another CT scan. My aneurysm had opened again, flooding my brain with a fresh tide of blood.

As I was being wheeled back to the ICU, I saw Stephanie and Stanley. It was morning, and they had come to wish me good luck. Despite the sudden, new bleeding, Dr. King had decided to operate.

My last words to them, pushed out through unbearable pain, were: "Let’s get this over with!" Looking back, I wish I’d said something more memorable, because it would be a very long time before I would speak again.