Click on the link below: EP 57: Planning for the Unexpected
Wow…I don’t believe it. I posted that Jill will be speaking on April 26, and EVERYONE that logged into my Blog to read more about it. When I wrote my last post about me having reading challenges, hardly anyone logged on to read it!
I don’t understand it. Sure, Jill was there to help me through my recovery. She help me re-learn EVERYTHING, she walked with me, she cared for our two beautiful children, she took care of all the bills, she took care of the house, she shopped for the groceries, she took me out driving so she could re-acquaint me with Lake Oswego, she helped the children with their homework, she listened to our kids complain about me, she cooked delicious meals EVERY NIGHT, she said prayers EVERY night, etc. But thats it. I did everything else: I sat around having people wait on me.
Now I feel dumb; I guess she WAS fantastic! OK, sure…come see Jill speak about HOW she handled this crises with grace, faith and with love.
Now, can I talk about me? If you didn’t read my LAST post, please continue…
I still struggle. Let’s see if I can explain it.
I recently read the birthday cards I received. They were very funny to everyone in the room. But when I read them out loud, I had to concentrate on every word. Unfortunately, I didn’t know what I was reading, but people laughed.
If I read them out loud several times, I might get the humor but it would take work. It is hard to explain the disorganization in my brain. When I read, I see each word but I can’t connect them in any context. They are just a bunch of individual words.
Even now, Jill is writing this for me because I can’t do it myself. I tried to tell her what I wanted to write about but my explanation was all over the place. She asked me questions and worked with me until she understood what I am trying to explain. It is frustrating but luckily, we work well together and usually laugh as we talk things through.
Language and cognition are big hurdles. It has been 9 years and I am still trying!
See…wasn’t that REALLY good stuff???
Business Men And Women of
PORTLAND BUSINESS LUNCHEON
Invite you to Downtown April 26 with
I felt really POSITIVE about the event. We had some problems in the set up, but fortunately my contact there gave us plenty of time to work things out. I ended up working for almost an hour to get the program to work properly. Again, God bless my contact for taking the time to make sure that everything work out. He was amazing!
And what did the people leaving say?
You will have to wait to here! I know; how mean is that.
Jill had her books on the table, all signed, ready to give to the people attending. I took the photo below. I don’t want to brag, but isn’t she just wonderful!!!
Everyone has a story to tell. Gordon and I are included in this book of stories by seven local area people, all facing challenges, all looking for hope, and all learning to rise from their circumstances to find meaning. It is an honor to be included with these people and humbling to read their stories.
Would you like to read it? Our story is #5: Letting Go. We have 5 copies to give away. Simply click here and fill in your address. Upon receipt, we send out the first 5 books. Better hurry!
Thank you so much for the response. Yes, speech is continually a struggle for Tim as well. Probably his least favorite therapy. I agree any little gain is huge for us too because as time goes on the larger gains don’t come as frequently so celebrating the little things is the way to go. Some days however it seems like 2 steps forward 5 steps back depending on how he feels or just “if it there” that day. Some days he just can’t get his thought process of motor movement working especially with speech and the other day when he was trying to take a step. He just could not figure out how to step up a step. Something he does lots of times a day everyday and for whatever reason it just did not work that day.
I am very lucky that Tim’s attitude has always been positive. It is almost a blessing and a curse because yes he was positive and not angry or depressed but a negative because I think it took him longer to realize the importance of practice, practice, practice. I think it took him getting tired of me not knowing what he was trying to communicate to realize that it just was not going to come without working on it.
Interesting tidbit, Tim also suffered a dissection of his carotid artery. His was the interior and it just broke off. No clot, it was just empty. The Neurologist said it looked like he suffered a trauma with stress that might have gone along with being a body builder. Tim is nowhere near the body builder type. I follow a lot of support group feeds and I don’t see dissection too often as a cause so it thought that was interesting when I read that Gordon had a dissection as well.
In the beginning I kept trying to figure out why this happened was there something I missed, etc. But over time I have realized that I cannot focus on that because there is no answer and by constantly focusing on those things was not good for me. What kinds of things have you found to be helpful to keep your own sanity so to speak? (You know when those days creep in that put you in the mindset of can I do this, am I doing everything that I am supposed to be doing, am I making the best decisions both financially and medically for everyone, etc).
Tim…you are not alone!
A warehouse along Macadam Avenue in Portland houses a maze of cardboard, almost like an adult version of children’s forts.
The cardboard has aided Oregon Health & Science University in designing the rooms inside its planned $340 million patient building, parking structure and guest house that will break ground early next year.
In an unusual move, OHSU and ZGF Architects are engaging all the various groups who will use the building in the planning process. Doctors, nurses, patients, engineers and housekeepers all have given input over the past five months.
“It’s given everyone a new perspective on how we can craft everything,” said Dr. Reid Mueller, associate professor in the Division of Facial Plastic and Reconstructive Surgery. “Everything from the way the hallway flows to the positioning of the chair when you’re sitting with your family member and the importance of privacy in the recovery area.”
One patient who has participated is Jill Viggiano, whose husband had a stroke seven years ago.
“I have no medical background at all, it’s like stepping into Oz,” Viggiano said. She suggested the waiting room in the new building contain more distractions for family members, including kids — “something to play with and look at and be a kid and not feel like they’re annoying everyone else.”
The Center for Health and Healing South, as the new building will be called, will sit just south of the existing Center for Health and Healing, which contains doctors’ offices and outpatient space. It will also be a little shorter, at 15 as opposed to 16 floors.
The entire project will encompass 750,000 square feet. It will include 48 “extended stay” rooms and 76 guest rooms above the adjacent five-story garage. A small park will remain next to the patient building.
CHH-South will also contain space for surgery, interventional procedures, outpatient clinics for cancer, cardiovascular disease and gastroenterology, a pharmacy and imaging and lab space, conference center, parking garage and space for Knight Cancer Institute clinical trials.
An oval-shaped “mission control design” will allow gastroenterology, cardiology and pulmonary procedures to share a central core and some nursing staff.
“One of the great things about the space is that we’re integrating with other specialties,” said Dr. Gene Bakis, assistant professor of medicine, Division of Gastroenterology and Hepatology. “Patients are best served by multiple specialties. Here we’re going to be feet away from each other to promote cooperation and collaborative thinking.”
Jill is truly amazing. She got another paper to run one of her stories! Good for you!
How is your marriage now?
Our marriage is good! It is a good thing because we spend all day, every day together. All the things that made our marriage good pre-stroke are the same things that make it good now. We appreciate each other’s strengths, work ethic, sense of humor, and willingness to compromise. We have created new routines that work for both of us, giving us some variety in our days. We have found our New Normal and we have found peace.
If you could give your pre-stroke self any advice, what would it be?
Buy more disability insurance!! The financial pressures of disability are not fun. Fortunately we had some disability insurance—thank God. Without it, we would have lost our home, I wouldn’t have been able to stay home and take care of Gordon or be there for the kids. Our outcome would have been completely different, and not in a good way. We don’t have much, but we have enough to provide a stable, relatively normal home environment. What a blessing.
How has stroke changed your lives?
Every part of our lives changed because of the stroke. Gordon’s active, successful, productive life as a sales consultant is over. My life of being active and involved in the community is over. The plans and vision we had for our future are gone. Our resources are limited so our opportunities are limited. It took time to make peace with these changes. We all mourned the loss of the life we worked so hard to build. However, our new life has its blessings: we appreciate each day we have together, we don’t worry about the future, we are grateful for what we have. It certainly is not the life we planned but it is a life still filled with joy, love, and meaning.
Why did Jill write Painful Blessing?
I wrote Painful Blessing for several specific reasons, none of which were that I was dying to be a published author. Reason #1: acquired brain injury, such as stroke, is devastating, scary, and lonely. We can’t be the only people to experience the crazy unpredictability brain injury brings, but it sure felt like it. Reason #2: even after all these years, recovery is ongoing. There have been no shortcuts, just relentless hard work. Reason #3: We want to bring hope to others going through their own challenges. We encourage people to examine their life’s foundations. Are those foundations unshakeable? Reason #4: to encourage people to persevere through their challenges. Life will probably be different on the other side but that is ok.
What role did your Christian faith play in your story?
Our Christian faith is the sole reason we are a success story. When Gordon was lost in the fog of his stroke and I was facing the terrible realities alone, only the knowledge that my loving Savior was carrying me kept me from stepping in front of a bus and making the whole thing end for me. Well, Jesus and love for my children kept me away from a bus. Gordon’s is a story of recovery, mine is a story of surrender. When I gave up thinking I had control, fully surrendered to God, fully acknowledged His power, and fully put my life and our future in His hands, everything was better. Trusting Him allows me to accept our new life and embrace each day as it comes. He has never failed me.
What are your favorite audiences?
My favorite audiences ask questions and engage in wonderful discussion after we speak. I love the interaction with those who are willing to share, question, and relate to our talk. Each audience listens from its own perspective: medical professionals, business professionals, young people, old people, men, women, survivors, caregivers, and everyone else. The questions and discussions reflect the personality of that audience. Everybody experiences obstacles at some time in their lives and our story is really about overcoming obstacles. Our time together is meaningful and interesting and we all leave the room with hope. I love that.
How did you get started with public speaking?
Early in Gordon’s stroke recovery, when we knew nothing of the journey ahead of us, we naively thought he would be fully recovered in 1 year. We thought we would have a party for all the wonderful people who helped us and we would all celebrate the end of a horrible year. At the 1-year anniversary of the stroke, Gordon was nowhere near recovered so we decided to postpone the party until the 2-year mark. He had to be recovered by then, right? At the 2-year anniversary, Gordon was still in terrible shape so we agreed we would celebrate full recovery at 3 years. At the 3-year anniversary, we finally understood that recovery was probably going to be a lifetime pursuit and that maybe we should just have the party anyway. Gordon agreed but he said he wanted to talk about the experience at the party. It took 6 months to write “My Brain Has A Hole In It” and 8 months for Gordon to practice enough to deliver the speech. On the 4-year anniversary, we had the party and Gordon spoke. The overwhelming feedback was that Gordon needed to tell more people—and here we are!
How are the kids?
When the stroke happened, Rachel was 14 years old and Tommy was 12. If those years weren’t hard enough, adding the chaos and devastation of their dad’s stroke pushed them in ways I never wanted for them. The threat of losing their father and their home as well as the loss our lifestyle and routines was life changing. It was painful, scary, and de-stabilizing. The good thing is that the kids were able to see their parents stay committed to their marriage, be supportive no matter the circumstances, and rely on their Christian faith in good times and in bad. Our kids are young adults now and are choosing their own paths. We are proud of them and the choices they are making. I don’t think we really know all the ways the stroke affected them. They don’t like to talk about it. Our hope is that they are able to move past the sad memories, have strong, stable marriages of their own, and appreciate the blessings of family and faith.
If 100% is full recovery, how recovered is Gordon?
I would rate Gordon as 80% recovered at the 7-year mark. His memory is quite good. We continue to see improvement in the right side of his body. While his right arm has movement, it isn’t useful, controlled movement. Language and cognition are the real problem. He has dramatically improved his ability to converse but extended thought and expression are still out of reach. Add any stress to the conversation and his language stops.