Now and Forever

June 2014, two men struggled to get Mark into our friends convertible, but it was a great ride and memory now. 

In just one moment, our life’s journey took a drastic change and now I can’t help but relate our life as before or after April 27, 1991. In my mind it’s like I have two filing cabinets, one holds memories of before and the other after the car accident. Much love is contained in each cabinet, however the two different lifestyles did changed our relationship. The one constant is as Carole King sings, “Now and forever, I will always think of you.”

I still miss the way things were in my before cabinet and enjoy reflecting on the files contained there. I have to smile at the possibility of my mind embellishing those twelve years of memories, because most of the files hold an easier and happier way of life.

Anniversaries have a way of making me reflect. Because it will be twenty-five years in just a few days, I realize my married life after the accident cabinet holds more than double the files of my before cabinet. To lift my spirit I’ve set my sights on writing about the positive aspects contained in my after cabinet, which I consider blessings.

I’m glad Mark and I survived the accident which could have taken both of our lives. I’m grateful our children weren’t with us when it happened. At the young ages of seven and eight, they appeared to be more resilient and accepting of our new lifestyle than they might have been if they were teenagers at the time. Their childlike belief that all would be well kept us working towards their expectations.

I’m thankful the accident happened before we moved instead of after. I’m grateful for the advice and insight of others to stop the sale of our home. This unfamiliar road would have been so much harder had we been attempting to get settled in a new house while seeking new friendships. I appreciate the love and support we felt from our Sandy neighborhood. The benefits of Mark returning home to a familiar place surrounded by familiar people proved to be immeasurable, especially with his short-term memory problem.

There are unexpected advantages to Mark’s memory issues, such as not recalling the pain and length of time in rehabilitation. I believe his poor short-term memory has saved him from depression. He is fun to be with and works hard to accomplish things which used to come easy. His example of patience, endurance and the constant expression of appreciation encourage me to do and be better.

We’re fortunate Mark regained consciousness after three months of being comatose and remembered the most valuable things in life—faith, family and friends. He retains his determination and quick-wit. He enjoys making people laugh and reminds me that bringing happiness to others brings joy to oneself. He teaches me what’s most important in life and encourages me not to worry about all the other stuff.

I appreciate of the wonderful people we’ve met since our accident and their positive examples. They are mentors who give me strength, courage and faith that I can succeed in my caregiving journey. I’m grateful for all those who have shared a part of their stories as guest authors on Uniting Caregivers.

We’re happy to live in a wheelchair accessible home which provides comfort and conveniences, making our life easier. We’re fortunate to share our home with my parents who are willing to help in every way they can.

We’re lucky to have friends who love and encourage us. Friends who made our move to Draper easier. They welcomed and helped us feel comfortable right from the start. We moved just five years after the accident and we were still adjusting to a new way of life. Their warm reception and support made our new pathway bright.

I’m privileged to have parents and siblings who are generous with love and service. We’re blessed they live close by and we can call on them at any time. If possible and needed, we know they’d come at a moment’s notice to assist in any way they could.

I’m fortunate to have the acceptance and love of Mark’s family and although they live in other states, we know of their concern and care for us. I’m thankful for cell phones, email and social media, which bridges the distance and keeps us connected.

I’m blessed to be a part of a large extended family where cousins, aunts, uncles, nieces and nephews are involved in our lives. We cherish our relationship with each one and I’m grateful for their love and loyalty to family.

Looking at all these files of blessings, I realize our life has turned out just as it should for our own personal growth. Our journey may have taken an unthinkable turn on April 27,1991—one I wouldn’t have chosen, nor expected or could have prepared for. However, joy is found in the after the accident cabinet. I believe happiness can be now and forever because Mark is a part of me and I will always be with him.

Offering Love and Comfort

My brother gave me an article out of the Reader’s Digest, September 2015 issue, titled The Art of Offering Love and Comfort, written by David Brooks from the New York Times.  I appreciated the suggestions and thought today would be a great day to share them in light of the tragic accident that happened in our neighborhood last week.

The Art of Offering Love and Comfort references the Woodiwiss family whose daughter at age twenty-seven died in 2008 from injuries resulting from a horseback riding fall. In 2013, another daughter, Catherine, at age twenty-six was hit by a car while biking to work. She has endured and will continue to endure a series of operations. Her recovery has been slow. Her mother, Mary, talks about the grief that a parent feels when he or she has lost a child and sees another badly injured, “a pain felt in bones and fiber.”

Through the Woodiwisses experiences, they share a few lessons about how those on the outside zone of trauma might better communicate with those on the inside. The right responses are not limited to what is discussed in the article, but rather a collection of their wisdom, which I found useful. My favorite points as written in the dos and don’ts list is as follows:

“Do be there. Some people think that those who experience trauma need space. Assume the opposite. Most people need presence. The Woodiwisses say they were in awe after each tragedy by the number of people, many of whom had been mere acquaintances, but showed up and offered love. They were also disoriented by close friends who simply were not there, who were afraid or too busy.

Don’t compare. Each trauma should be respected in its uniqueness. Catherine writes, ‘From the inside, comparisons sting as clueless, careless or just plain false.’

Do bring soup. Nonverbal expressions of love are as healing as those articulated. When you see a need and act on it, whether it’s a meal, a needed item or helping with a household chore such as dishes or laundry, it is appreciated. The Woodiwisses recall a friend who noticed they didn’t have a bath mat and went to Target and bought one. It was a thoughtful gesture which they will never forget.Don’t say, ‘You’ll get over it.’ Catherine writes, ‘There is no such thing as getting over it. A major disruption leaves a new normal in its wake. There is no back to the old me.’

Do be a builder. The Woodiwisses distinguish between firefighters and builders. Firefighters drop everything and arrive at the moment of crisis. Builders are there for years and years, walking alongside as the victims live out in the world. Very few people are capable of performing both roles.

Don’t say, ‘It’s all for the best.’ Don’t try to make sense of what has happened. Don’t over-interpret and try to make sense of the inexplicable. Some people have a tendency, especially in an achievement-oriented culture, to want to solve problems and repair brokenness.

What seems to be needed is the art of presence: to perform tasks without trying to control or alter the situation.  Allow nature to take its course. Grant the sufferers the dignity of their own process. Sit simply through moments of pain and uncomfortable darkness. Be practical, mundane, simple and direct.”

I’ve touched on the key points of the article which resonated with me. What insights do you have from your own experiences? How have you been helped or how did you help someone through a time of grief and/or affliction? Your thoughts in the comment box are appreciated. Together we can add to this list and help one another improve in offering love and comfort to those who are suffering.

A Good Society

Once in a while our eyes are opened to what’s right in society. The news often reports criminal activity and the negative things which happen. Saturday night I witnessed a lot of goodness when a tragic accident happened in our neighborhood.

 Image Credit: KSL & Tyler Woolstenhulme

While making dinner, I heard sirens rush past our house and then a loud helicopter engine, which made me realize something was seriously wrong. Apprehensively, I walked outside to see a life-flight helicopter hovering low in the sky, appearing to look for the right place to land. I hurried to the top of the street and saw a lot of police cars blocking the road. I know and care about those people who live in the homes where the police cars were. A fearful chill ran down my spine as I worried about what was going on. I spotted a few other neighbors hurrying to the scene and decided to stay out of the way. I waited and watched at the top of the street.

The helicopter landed and after what seemed like forever, I saw one neighbor leaving the scene and walking back towards his home. I rushed in his direction to find out what was happening. Obviously shaken by the sight, he spoke quietly with a sad, regrettable tone in his voice and told me a young boy, who he didn’t recognize, had been hit.

“Why hasn’t the helicopter left yet?” I anxiously asked, fearing that the boy might not live.

“I don’t know, maybe he didn’t survive or maybe it’s not as bad as they thought,” he said with a trembling voice.

Image Credit: KSL & Tyler Woolstenhulme

It’s a heartbreak for sure when tragedy strikes, but when an innocent child is involved the pain is more intense. I didn’t know who had been hit, yet I felt sorrowful, not only for the boy, but the whole family affected and the driver of the vehicle. Upset by the news, I paced back and forth for a moment longer, wondering if I could be of help or if I’d just be in the way.

My feet turned and reluctantly carried me toward the accident. I recited in my mind what I would say and do to give support and care to my neighbors. I silently prayed for inspiration to do and say the right thing as I headed in their direction. I witnessed the helicopter lift in the air and speed toward the Wasatch Mountains where our renowned Primary Children’s Hospital is located. Relieved by the thought that the boy was now on his way to the best medical care in our state, I also realized how serious his condition must be.

When I reached the accident site, I observed a neighbor leading eight to ten children away from the commotion. These children were obviously in shock and a wise neighbor had the foresight to get them away from the scene and over to her house. I admired her clear mind and calming influence as she walked with them peacefully across the road, now closed to traffic, toward her house. I’ve respected this neighbor for many years, but my esteem for her grew by leaps and bounds as she seemed to know just what was needed and calmly did it.

Another neighbor filled me in on the details as he knew them. A young family was leaving a baptism celebration which was held at our neighbor’s home. While walking to their vehicle their three-year-old boy left his mother’s side and darted out into the road. In that split second lives were changed forever.

Another neighbor who happens to be a doctor gave the young boy CPR and medical attention until the paramedics arrived. Other neighbors gathered to give care and support to the families involved.

Later I learned there were no drugs, alcohol or speeding involved. The police reported it as an unfortunate freak accident. The driver was not at fault and had no time to stop when the boy darted out in the street.

Regrettably, the little boy died later that evening and the whole neighborhood is mourning the loss of a boy who most of us personally didn’t know.

Through the sadness, I’m amazed by the love and care of people. Too often our attention is drawn to what’s wrong in our world. Yet most people are genuinely good. Our beliefs may differ. We may not agree on how our city, state or country should be run. We may wish our neighbors would be more thoughtful at times and about certain situations. However, when it comes to a crisis, most people pull together and I witnessed that last night. Today, I’m grateful for the society we live in and the thoughtfulness of others. I’m thankful for police officers and investigators who are steady in horrific circumstances. I’m grateful for how quickly medical assistance can arrive in an emergency. I’m thankful for neighbors, friends and strangers whose best character traits can be realized and appreciated in a tragedy. I’m grateful to know even strangers mourn with those affected by heartbreak. I’m fortunate to live in a good society where most people do care about others.

The Effect of Brain Injury on Caregivers

On the third Thursday of every month, Laura Nordfelt inspires and uplifts caregivers in the Salt Lake Valley at the Intermountain Medical Center in Building 1. I met Laura and her husband, Greg at the 2013 Annual Brain Injury Conference. The circumstances which caused Greg’s traumatic brain injury (TBI) were different from Mark’s, but the feelings and experiences with therapy and the desire to return to a familiar way of life are very similar.Our hearts knitted together as they shared their story with me and their goals for helping those affected by brain injury.

At the last caregivers’ meeting on March 17, 2016, Laura shared some of her feelings on how brain injury effect’s the caregivers. I was unable to attend, but Laura emailed me the handout she’d put together. I was impressed with how accurately she’d expressed my own feelings. When I called to tell her how well she pinpointed my thoughts, she said many others at the meeting told her the same. With her permission, I share them with you.

Written by Laura Nordfelt

 Feelings of Isolation – You may be worried or sad because your loved one doesn’t “know” you or “understand” you the way he or she used to. Sometimes your new life may feel like a life sentence of solitary confinement because you are alone with the thoughts you used to share with your significant other. Remember its ok to feel frustrated. You may feel guilty for having thoughts of “not living up to the task.” Forgive yourself.

Brain Injury is Contagious – With shock and stress your brain might stop working the way it used to. You may experience memory loss, forgetfulness, following through with plans, lack of organizational skills, etc. TBI caregivers deal with a new plate of responsibilities in epic proportions. Some caregivers find it necessary to write every detail down (i.e. wash my hair). There are even stats to back up our forgetfulness and occasional depression and anxiety.

I Don’t Know How to Ask For Help – This was by far the hardest for me. I had too much pride and began to develop guilt and inadequate feelings like, I’m not doing a good enough job. Should I be leaving him to go to work? Is it ok for me to have free time?

Taking Care of Myself is a Group Effort – It sometimes means that you have to say “no” to phone calls, emails and events that you used to say “yes” too! Those very people who told you to take care of yourself may even get offended. Saying “no” will give you permission to get the much needed quiet time away from the world.

To truly support a caregiver in successful self-care, expectations need to be substantially lowered. This will lift the caregivers load enormously! Telling a caregiver to “take care of themselves” initially after an incident, may be too overwhelming. This advice needs to be delicately communicated in a loving manner at the right time and phase.  The closer a loved one is, the better they will be able to discern when it is essential to help a caregiver understand the “self-help” concept.                                                                                                         

I’m Not Perfect and There’s No Manual – Some days you will shine at caregiving and some days you won’t and you may doubt yourself. This is an intense situation. It’s a brain injury and it’s not just packaged into a small amount of time. It’s a lifetime role change. Just do the best you can and forgive yourself.

We received a large packet of TBI and Neuro Rehab information when we were discharged from the hospital, but I have no idea what happened to it.  I was in survival mode during the first 6 months after Greg came home.  Details and instructions were difficult to remember and organize. There was significant pressure coming at me from all angles. Keeping things straight became a foreign strategy.                               

Brain Injury Doesn’t Go Away – I received a lot of help at first and then support started to get quiet. In some ways it’s comparable to a death. Family and friends sort of go away over time. I realized its natural, but I was still trying to handle significant TBI rehab issues. Brain injury doesn’t go away. It goes with you on vacation and it’s with you everywhere. People will have to adjust to a new way of interacting with you and your survivor. Your friends and family may miss the old you, who you were individually and as a couple. That’s okay too.

I found that the first year is about surviving.  Then it’s about processing all the things you’ve lost while still being grateful for what you still have. This is much harder work!      

Making Lemonade from Lemons is an Art Form – Most of the comments I heard from Greg’s accident were positive and supportive. However, a few caught me off guard making me feel as if our lives were ruined. I refused to accept his brain injury as a life in ruins. If anything, it has provided us the challenge of living better and more productive lives than we were before.          

Volunteering in the TBI Community – Greg’s brain injury provided us both with volunteer opportunities that we never would have imagined. It’s brought us closer together in so many ways. It’s about looking for the silver lining in life.  It’s about lowering our expectations and getting real about what really matters in life like relationships, joy, time with loved ones, great meals together, sunsets, etc. What we would have considered small accomplishments are now huge victories.

Some of Laura’s thoughts and ideas originated from Abby Maslin, Reinventing our family. Ref: http://www.abbymaslin.com/ I’ve been reading Abby’s blog and I highly recommend it. She expresses herself very well and also writes articles for  http://www.brainline.org/abbymaslin/

For more about Greg and Laura Nordfelt’s story, see the articles I shared on March 30, 2014 and their news interview on September 20, 2015.

Thanks Greg and Laura for all you do for the Brain Injury community.