How to go From Surviving to Thriving

My daughter, Katie, serves on the conference committee and designed this brilliant image for it. I couldn’t be more please with all the service she gives to the BIAU.

This was the theme for the 2015 Brain Injury Alliance Conference and Alison Delgado’s, is a great example of someone going from surviving to thriving. She was the keynote speaker and her story was inspiring and her advice was excellent:

“For medical personnel:

• Know your patient and their loved ones—it will keep you motivated as you work with them, even on the tough days
• Know their ultimate goals so that you can look beyond your own
• Get their loved ones involved—it will empower both them and the patient

For loved ones:

• Remain positive, even on the tough days and don’t be ashamed to lean on other loved ones-Escalator
• Remember to take care of yourself
• Ask questions, stay involved

Patients:

• Suddenly, everything has changed
• Set goals, work toward them each day, ask for help
• No therapy is beneath you
• It may take days, months, years—but if you keep working, you can always achieve more than what was expected

For Everyone:

• Hope
• Pray
• Love
• Believe in miracles”

2015 BIAU Conference

I loved how straight forward Alison spoke. If you haven’t joined a support group or attended a conference relating to whatever condition you or your loved one is dealing with, I highly recommend it. I’m always trying to learn how to be a better advocate and caregiver. The support groups and conferences provide good information which supports and helps families and individuals. This conference is designed for people with brain injuries, their families, doctors, nurses, therapists, educators, case managers, social workers and other service providers. The icing on the cake which comes from attending the conferences is to have the opportunity to meet people dealing with similar issues and to mingle with people who have helped us with recovery from the past. Some of whom we only see now at the conference. It reminds me of how grateful I am for those health care professionals who not only helped Mark survive, but thrive.

Alison Delgado’s Story

Friday, Mark and I attended the Brain Injury Alliance Conference, which we enjoy every year we are able to attend. It increases our knowledge and awareness of those affected by the injury. The keynote speaker, Dr. Alison Delgado, was the perfect choice to kick off this year’s theme, From Surviving to Thriving. After all she completed medical school, won the Flying Pig Marathon, ran the 2013 Boston Marathon and has reached the summit of two of Colorado’s 14,000-foot peaks.

Image credit: http://www.cnn.com/2011/HEALTH/03/05/married.doctors.emergency/index.html

Dr. Alison Delgado has also climbed a mountain of a different kind. As a young pediatric resident, she was hit by a car while riding her bicycle fifteen miles from her Cincinnati home on October 16, 2010. This caused serious physical and neurological injuries. Her husband of only five months, Dr. Tim Delgado, who was working as an emergency department resident at the University Hospital and trained as a flight physician, arrived via Air Care. He was prepared to take care of patients in helicopters during the precious minutes between life and death, but never dreamed he’d be called to save his wife. Tim was called to provide assistance to a “Jane Doe cyclist in her 20s” during her transport to University’s trauma center. When Tim arrived and realized that the accident victim was his wife, a second helicopter and physician were summoned.

Alison, who was wearing a bicycle helmet, did not suffer the kind of traumatic brain injury normally seen in bicycle accidents. Although she suffered numerous fractures to her neck and body, her skull was intact. Inside her brain, however, the impact created significant problems. It caused a blood vessel to tear and spill blood into the space around her brain, a subarachnoid hemorrhage. The injury either led to the development of a dangerous aneurysm—a bulge in the blood vessel wall—or aggravated an existing aneurysm. The discovery of a second aneurysm on the other side of her brain suggested that a genetic abnormality had elevated her risk of developing aneurysms.

During a series of procedures while at Mayfield Clinic, the neurosurgical specialists worked to treat the aneurysm and stop the bleeding. But the aneurysm ruptured a second time, four days after Alison had returned home from the center. The set back resulted in a seizure that forced her husband to insert the breathing tube. That incident put her back in the hospital for three weeks. Dr. Mario Zuccarello, a renowned cerebrovascular surgeon, neutralized the aneurysm by rerouting the blood flow around the damaged artery and then shut off blood flow to the aneurysm with a clip.

With the worst behind her and twelve surgeries to her brain, chest and jaw, Alison was able to focus on rehabilitation and recovery. She progressed rapidly from her lowest point, when she had trouble remembering Tim’s name. They played Uno, Life and Scattergories. Using an iPad, Tim showed her photos and prompted her to search her memory for the words to describe them. Certain words, including “helicopter,” proved elusive at first. Step by hard-earned step and word by remembered word, Alison worked hard to regain her abilities. Recovery also meant daily workouts at the gym on the elliptical, weight lifting and exercises to improve her balance. At first Alison had to hold Tim’s hand to do lunges; eventually she could do them with weights.

The Delgados exercised every day, working to restore Alison’s strength. Credit image: http://www.cnn.com/2011/HEALTH/03/05/married.doctors.emergency/index.html

Reading came slowly at first, then more and more quickly. Sometimes Alison would have trouble finding the words she wanted to say, but her improvement and determination never ceased. Her speech therapist asked her to read a medical article and then write about it. She began attending rounds at Cincinnati Children’s Hospital and by February 2011, only four months after her initial injury, she had presented two cases at bedside rounds. 

Dr. Zuccarello wouldn’t let Alison run again until after she had recovered from the surgical clipping of the second aneurysm, which he performed in early March 2011. “We are focused on one goal: getting her back to work and to where she feels normal,” Tim said. He was her number 1 cheerleader and kept her motivated. In April, Alison began working part-time and in May, she was back full-time. Alison had to make up extra time in residency, but finished in December 2012.

Alison now lives in Utah and works full-time at Summit Clinic in Park City, specializing in Pediatrics. Tim, now works in Salt Lake, specializing in Emergency Medicine. He not only saved her life twice, he took a three-month leave to care for her. He says, “There are 54 peaks in Colorado over 14,000 feet, she wants to get the last 52.”

What an inspiration illustrating surviving to thriving. I imagine the Delgado’s are awesome doctors given their personal experience of two near fatal injuries and recovery. There’s much to gain from survivors and those who support and encourage them in their recovery process. Every survivor is unique and responds to treatment in different ways. Their results are influenced by many factors, but I love to hear and read about their challenges and successes. I appreciate Alison, for sharing her story at the wonderful and worthwhile 2015 Annual Family and Professionals Conference.

Reference: http://www.mayfieldclinic.com/MC_hope/Story_alison.htm#.Vi0ssCu94dx

To read more about the amazing doctors story go to:

http://www.nydailynews.com/life-style/health/doctor-saves-wife-life-dr-tim-delgado-told-today-show-horrifying-accident-article-1.121267

http://www.cnn.com/2011/HEALTH/03/05/married.doctors.emergency/index.html

The Write Invitation

I’ve written a few articles on the value of writing your story. In Six Benefits of Writing I explained how writing is therapeutic. Now I’m inviting you to share your story on Uniting Caregivers. Your story is important and will be inspiring to all who read it. If you’ve been a guest author already, we’d love an update. I hope you’ll give it some serious thought. Please consider this your personal invitation.

Click invitation image to enlarge.

The questions listed do not have to be answered. They are only suggestions to get you started. If you have questions or concerns,please email Barbara@UnitingCaregivers.com.

You can also check out Writing for Past, Present and Future and In The Beginning to read more about the value of writing and sharing your story.

Six Benefits of Writing

Sharing how Uniting Caregivers got started, In The Beginning, reminded me of the value in writing. I believe you can benefit from it too.

After the car accident I felt the need to write. My head was spinning with all kinds of worries about Mark, our children and how I would juggle all the responsibilities. My attention span was very short. I couldn’t watch T.V. or concentrate on a book—so I wrote. I would maybe write a few sentences about my worries, but mostly I recorded Mark’s progress such as how many breaths he took on his own that day and what his temperature was. I wrote about things most people don’t think about let alone write or read about, but it helped me focus on the positive. I still have that notebook and when I look back on it I’m reminded how far Mark has come.

The value of writing about our experiences brings meaning to it and helps me understand the purpose in the events. It’s amazing the clarity that comes from writing. Through writing I am able to sort out and work through the emotions by searching for the right words to describe it. The act of writing has provided me with a greater depth of self-knowledge and has helped me become a resilient person. Some seek the comfort of a therapist’s office, I find it in writing.

Writing is so much more than a method of communication. Six benefits I’ve found in writing:

1. Become better at expressing yourself. When we are lazy with words, it is more difficult to describe feelings, share experiences and make ourselves understood.
2. Remember things long forgotten. As you write about memories it is like opening an old photo album. Your pen begins to expose feelings and details you had forgotten, and dreams you had lain aside. You suddenly remember people you would like to reconnect with.
3. Keeps distractions at bay long enough for you to explore wonders of the past. Sometimes it is frightening, sometimes wonderful and almost always beneficial.
4. Records history which will impact how you make future decisions.There’s a reason that the greatest leaders in history were students of history. They learned from what had happened before. Your history is important. Don’t let it be forgotten.
5. Reminds you of your dreams and keeps you moving toward them. It is a means of keeping track of your purpose and the goals that will lead you to fulfilling them. Reviewing what you have written is a perfect way to see your progress and to reveal when you have been distracted and may need to refocus.
6. Gives you a record of God’s blessings. In the midst of troubled times it is so easy to forget what He has done for us. Reviewing our blessings will give us the faith needed to endure our trials.

Reference: http://www.kendavis.com/personal-development/daily-writing-benefits/

You don’t need to be a professional writer to achieve the benefits. Writing is an exceptional tool for self-exploration and inner growth which is available to everyone. It can facilitate understanding and change in our lives. From the art of writing, we learn and grow and it is a powerful method to share our love, happiness, gratitude and fulfillment.

Do you write? How has it helped you? If you don’t, you really ought to try it. Whether you write it for yourself or want to share it with others, it will be benefical. I dare you to try it.

In The Beginning

It has been too many years since I’d sat at a desk in a classroom, I thought while looking through the Adult Community Class Winter Schedule. My 2013 goal was to write a memoir about our experience surviving traumatic brain injury (TBI). It had been a story I wanted to write for twenty-two years, but didn’t know how to go about it. I knew I needed knowledge and help with this goal, so I was especially interested by the “Writing Class” listed on the schedule. I didn’t know how I’d make time for this class between my work and caregiving demands, but I signed up for it anyway.

I recognized the familiar echoing taps of my shoes as I rushed down the large empty hallway of Indian Hills Middle School looking for the classroom.  It should have only been a ten minute drive, but it took me longer because I’d never been there before and it was hidden in a subdivision unknown to me. I opened the closed door, late as usual and unsure of what I’d gotten myself into. As I hurried to find the closest chair, the teacher, Brenda Bensch, smiled and welcomed me to the class.

Embarrassed by my tardiness, I apologized as she handed me the outline for the next several weeks. Although I wasn’t getting a grade or any kind of credit for the class, I wanted to do my best. I felt overwhelmed by the schedule. How would I fit writing on top of all my other responsibilities? I stayed focused on my goal and stuck with it.

Not the most flattering picture of me, but the only one I have with my writing teacher, Brenda Bensch (in the red) and my favorite classmate, Susan Knight.

That class and the next one in the spring influenced my life for the better and I have Brenda Bensch to thank for it. Some of her words of encouragement ring in my ears to this day. She taught if you want to be better at writing, you have to practice, just like anything else you do.  “Start a blog; write every day or at least three times a week.”  In my mind, I scoffed at the suggestion. There is no way I could make time to do that. I just want to focus on my book.  The more I wrote and had my chapters critiqued, the more I realized the importance of practice.

That summer Mark was hospitalized three times for blood clots. He got really weak so we spent twenty-one days at Rocky Mountain Care Center. While we were there, Mark’s occupational therapist, Jessica, suggested I start a caregiver’s support group. I thought, Where would I find time to do that? Jessica urged me by expressing the need, which she observed from other personal caregivers. “Your experience could be valuable to them.”

“Maybe I could start an online support group which could encourage and help other caregivers in the comfort of their own home and whenever it’s convenient for them.” Jessica loved the idea and just about every day for the duration of our stay she encouraged me to do it.

I work on a computer daily, but had no experience online. How do I create a website which could encourage caregivers? My talented daughter, Katie, designed Uniting Caregivers and taught me how to use it. I’m so grateful for her skills and patience with me in this endeavor.

My past writing experience has mostly been on a business level of composing demand letters for payments on delinquent accounts. Writing a book or an article is a very different style of writing and much more enjoyable I might add. I appreciate and I’m so grateful for my sister-in-law, Dianne, who proofreads every article and corrects my punctuation. She gives me the confidence I need to publish the article.

Today marks the second anniversary of Uniting Caregivers.  I’ve learned much about caregiving and caregivers through the story’s others have shared. Through my experience the past two years, I realize how therapeutic writing is. It has increased my understanding of others as well as myself. As I search for the right words to express my thoughts and feelings, I come to see things more clearly.

Every caregiver I see, I admire. They’re putting another’s need before their own wants. I feel their exhaustion and worry. I share their overwhelming responsibility and increased love for the person they care for. Without even exchanging words, I feel connected to them. I want to know about their story. How do they manage all they have to do? What keeps the love growing and resentment at bay? When would they have time to share their thoughts and feelings?

I’ve greatly benefited from this experience and appreciate you as a reader or a guest author. If you’d like to share your story, I’d love to publish it on Uniting Caregivers. It may seem like a daunting task, but I’ll help and support you any way needed. Your experience will be valuable to me and to others. We are in this together, encouraging and inspiring one another.

The Land of Well

“How was it going back to church today,” my daughter, Katie, asked last Sunday just after I finished my article, There’s No Place Like Home.

Being in the mindset of the Wizard of Oz I said, “It seemed a bit strange to be in the Land of Well around a large group of people without apparent physical challenges.”

She seemed surprised by my response so I explained, “I was so involved with health problems I forgot there are many more people who are physically fit. Seeing people with all their limbs intact and joints which appear to be working without any thought can seem strange after being around many who struggle.”

Most people don’t realize how fortunate they are for their good health. After being around others with limitations and struggles, I promise myself I will appreciate my body more. However, it doesn’t take long after being in the “Land of Well” for me to fall back into that category of people taking for granted a body that works with ease.

I’ve recommitted to take better care of my own body. I vacillate back and forth from weight loss to weight gain, from being energetic to feeling sluggish. It’s a quirk of mine I want to change. I admire those who stay steadily motivated to eat right and exercise. I enjoy being physically active, but you wouldn’t know it to look at me. I weigh more than ever, missing a summer of walks, biking, hiking and gardening. It’s difficult to find the time with all the other responsibilities. For me it’s an issue of finding balance and making priorities. When my diet is good and my weight down I feel dynamic, full of life. During which time I can’t imagine falling back into my old habits. However, the patterns and routines creep back into my life at such a slow pace I don’t realize it’s happening until I find myself back or even further behind the place I vowed to never go to again.

What can be more important than taking care of my body? I know the answer, but find it difficult to put it first, before the other stresses and responsibilities of life. It takes time and planning to prepare nutritious meals and exercise—time that my relentless habits tell me I don’t have. I may have fallen off the band wagon again, but I can pick myself up, dust those bad habits off and start again.

In January of 2014 I wrote For Health’s Sake—Make a Date. I’m going to do it again, for I know my body needs to be appreciated by taking the best care of it I can. I’ve learned so much from people with physical limitations and realize their spirits make up for what their bodies can’t do. They remind me of the importance of appreciating what I have and taking care of it to the best of my ability. I enjoy the Land of Well and want to be there for as long as I can. I’m taking the leap, how about you?