Align Your Focus

Focus 1

A few years ago we needed to replace our garage door. I suddenly noticed every garage door in the neighborhood and beyond. As I ran my errands, whether it was in the car, on my bike, or on foot, I couldn’t help but spot every garage door I passed. I’d never noticed before how many different styles there are, with a variety of windows, or none at all. Some have several panels, while others have just a few and many are manufactured to look like wood doors. The choices are remarkable, which I’d never observed until I needed one.

I’ve had similar experiences when we had to replace the roof on our house and when our neighborhood was getting a block wall. Spontaneously, my sights focused on every roof or block fence I went passed. I may have been by them a hundred times, but previously paid no attention. It’s apparent to me we notice what is concerning to us and at different times and situations we will be focused on different things. Just as my attention to housetops, garage doors and fences changed once the decision was made and the project was completed, my concentration moved onto another area in my life that needed improvement.

In Jamie Sorensen’s article, Survivor—Nich’s Story Update, she told of the concerns with Nich’s seizures and how emotionally and physically exhausting it is for her and for Nich. They research for a neurologist and their options on how to control the seizures, looking for the best solution for controlling and improving this part of their life. She acknowledged the hardships and then focused on the blessings of being his caregiver. She recognized how it has helped their children grow in caring for others and accepting responsibility. I’m sure it isn’t the life she’d prefer, but she has aligned her focus on the solution and not the problem.

I enjoyed reading the tools she uses to cope with being a caregiver. “One of the ways I cope is through writing. I love to put my thoughts onto paper. I may not share them for the most part, but it seems to help. I love reading. I love listening to music. I’m that lady in the car on my way to work with the radio blasting, singing to myself. For the most part, the only time I really get to be by myself is during my shower, the drive to and from work, and of course the bathroom!”

She also acknowledged the areas we all can relate to as caregivers, “I’m still trying to find more ways to cope and get things out instead of letting them build up inside. I admit I need to do a better job of taking care of myself. I need to sleep more, work out, eat better, etc. I need to make time for myself, even if it’s just 30 minutes to read or take in a movie, taking time to rejuvenate, so that I have the energy and strength to care for those I love. I don’t know how, but I need to somehow find the time.”

Recognizing the problem and areas we need to improve on is crucial, but we need to align our focus on the solution, not the problem. It can take time along with trying different things before we find the best solution, but I have no doubt if we seek it, we’ll find it.

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Survivor—Nich’s Story Update

On February 16, 2014 Jamie wrote Survivor—Nich’s Story. I invited her to give us an update, which she graciously accepted.

Written by, Jamie Sorensen

Nich's FamilyFebruary seems like such a long time ago. We celebrated our six-year wedding anniversary and we’ve all got another year older! Since I last posted Survivor—Nich’s Story, part 2 back in February, there have definitely been a few changes in our lives. Unfortunately, Nich’s seizure activity has become more frequent, more severe and the recovery time has increased substantially.

In June, the neurologist that Nich’s seen since his car accident in 1999 retired and the entire practice closed. To make things even more difficult, they didn’t have any recommendations or referrals. After seeking advice from Nich’s neuropsychologist and our good friend “Google”, we were given the name of one of the top neurologists in Utah. The doctor reviewed his 15 years of files and decided to take him as a patient.  With epilepsy increasing in activity and severity, we discussed some different options. We’ve decided to go with a VNS (Vagus Nerve Stimulation) Therapy, which is basically a “pacemaker for the brain”. During the surgery, a small device is placed just under the skin up near the collarbone, and a wire runs from the device up to the vagus nerve in the neck. A special magnet held near the device triggers it to deliver a burst of stimulation, outside of the regular programmed intervals. For people with warnings (auras) before their seizures, activating the stimulator with the magnet when the warning occurs may help to stop the seizure. For the most part, he’s able to “sense” approximately 75% of his seizures.  We are hoping and crossing our fingers that the VNS will help in decreasing his seizure activity, as well as helping the recovery process afterward. The surgery is scheduled for October 10th.

Nich & JamieAs Nich’s caregiver, I’ve had to learn to cope with the ever-changing and increasing seizure activity. It’s been really emotionally and physically exhausting. I have felt so helpless at times. If you’ve ever had to watch someone go through a seizure, you know exactly what I’m talking about. I have such a hard time leaving him when I have to go to work each night. I feel like I’m abandoning him as I back out of the driveway. I wish I could stay home to take care of him full-time and do more to protect him. My heart breaks a little bit every time Nich calls me while I’m at work crying, not knowing what just happened and why his entire body hurts. I want to run to my car and drive straight home to comfort him. I hate seeing my husband, my best friend, my whole world, scared and in pain.

Last month our daughter, McKenzie, actually witnessed Nich having a seizure. Even though we’ve talked about it a million times and have gone over “instructions” on what to do, she admitted that it was scary to see her Dad like that. Later that night, I talked with her and explained everything that had just happened. I walked her through what to expect when Dad has a seizure. It helped her to realize what a seizure really looks like, instead of just hearing about it. Now that she’s seen it, she isn’t as scared anymore.

Coping with being a caregiver can be difficult at times. One of the ways I cope is through writing.  I love to put my thoughts onto paper. I may not share them for the most part, but it seems to help. I love reading. I love listening to music. I’m that lady in the car on my way to work with the radio blasting, singing to myself. For the most part, the only time I really get to be by myself is during my shower, the drive to and from work, and of course the bathroom! I’m still trying to find more ways to cope and get things out instead of letting them build up inside. I admit I need to do a better job of taking care of myself. I need to sleep more, work out, eat better, etc. I need to make time for myself, even if it’s just 30 minutes to read or take in a movie, taking time to rejuvenate, so that I have the energy and strength to care for those I love. I don’t know how, but I need to somehow find the time.

I’ve been a little lost along the way in the form of support. There aren’t very many people I’ve come across who can even remotely understand what I’m going through. My husband found the perfect quote online the other day. “The emotional and physical abuse your body goes through having epilepsy is almost impossible to explain to anyone who doesn’t have it themselves. It’s frustrating trying to explain the overwhelming emotions you have right after a seizure.” This is the same for those of us who have to watch a loved one during and after a seizure. It’s not easy trying to explain to people what we are dealing with or going through.

Nich's kids1Being a caregiver has truly been an extreme blessing in my life. Yes, it is tremendously challenging and can sometimes push me to the limits.  However, it is also abundantly rewarding.  I love taking care of my husband. I’m proud of my family and what we do for each other. I love knowing I am here for him when he needs something. I am grateful for the lessons my children are learning.  They are becoming so responsible and so grown up. I love that they worry and get concerned. I love that they can now pick up on Dad’s “bad days” and know when he’s just simply “off”. They put others before themselves.They pick up the slack and chip in whenever they can. I couldn’t have better kids!

Earlier this month, I wanted to do something to connect with my husband and to show him how much I truly love every part of him and to remind him that I married him “in sickness and in health”, so I designed a tattoo. We went together and got our tattoos of purple and green ribbons. The green is for TBI (Traumatic Brain Injury) and the purple is for Epilepsy.

Nich's tattooNicholas is truly an amazing person.  He is one of the strongest people I know. I admire his drive and passion for life; he honestly never gives up! No matter what cards he’s dealt, he always finds his way through the challenges. Nich is such an incredible father and is constantly making sure that the kids and I are happy and have everything we could ever hope or ask for. I couldn’t ask for a better partner in life. I love knowing we get to spend the rest of our lives together. I am proudly a Caregiver for life.

Thank you Jamie for sharing your story. We wish you both the best in the upcoming months and hope the VNS helps Nich’s seizures! It has helped lessen Mark’s. We’ll look forward to hearing how the surgery went and the improvements it makes. You and Nich will be in my thoughts and prayers.

Miracles Happen

Hope brings MiraclesSome miracles take time and aren’t always what we hoped for, nevertheless, they are still miracles. Mark’s life is a miracle, but it’s not the full recovery I hoped for. I was discouraged and hurt by doctors, nurses and the therapist who tried continually to squashed my hope with their negative statements and statistics because they didn’t believe I was facing reality. Concerning Mark’s recovery I was told I looked through rose colored glasses because I remained optimistic and hopeful. Twenty-three years later and with more life experience, I understand and have forgiven them for their pessimism. They were doing their job and I was adjusting the best I knew how with the strong feelings I had about his recovery. I’ve thought a lot about “false hope.” As shocking as the statement was to me, I recognize the spot the therapist was in, but that doesn’t mean I agree or like the statement. I truly appreciate their knowledge, which kept Mark alive, but couldn’t understand their lack of hope for improvement. I feel without hope life loses purpose. I closed my Sunday Story asking if there was such a thing as false hope. I loved Laura Nordfelt’s comment:

“This is a thought provoking question for me now. I realize that for the first year, I don’t think I placed any expectations on Greg’s recovery. I lived one day at a time. Go to the hospital. Go to appointments. Work with him on his therapy. Go to my job. Cook for him. Encourage him. Love him. Watch him nap. Watch him play brain games on his iPad. Go for walks up and down the street. I just went through the motions.

Then all of a sudden one day, he went to work for 3 hours. Pretty soon, it was 4 hours and so on. One day, he got his driver’s license and a whole new world opened up for us. Our lives began to take on a different meaning. Independence crept back in piece by piece.

I don’t think I ever had feelings that our lives would ever be the same because his physicians set me up from the beginning with cautious expectations. So hope? I tried to set the bar low and decided we would be grateful for whatever we were given. We (Greg) worked as hard as two people could possibly work with all the tools that the therapists had in their boxes and any more we found along the way. I believe it helps tremendously that we are hopelessly optimistic people! Just try and tell us we can’t do something, nope, not having it!”

Thank you, Laura, for sharing Greg’s miracle. I think being optimistic, hopeful and having faith is the most important tool in the box. It is the fuel that drives us to work hard for something. Twenty-three years ago, I set the bar high. Part of it was my lack of experience with life, but most of it came from being an optimistic, hopeful person full of faith. A person who proudly looks through rose color glasses and realizes there is a higher being in charge of life. I’m grateful I set the bar high and I’ve never regretted it. Have I been disappointed? Yes! But I wonder where we’d be today if I didn’t have high expectations and a belief that only God knows all.

We are all on a different journey with different experiences, however the feelings and emotions are the same. No one should tell another how they should feel or react to a given situation, especially when it’s a traumatic experience.

What miracles have you witnessed?

False Hope

On April 30, 1991, Dr. Hinchey walked into the I.C.U. room and said to me, “We only gave Mark a five to ten percent chance to live and given the extent of damage done to the brainstem, we do not expect him to come out of his coma. A tracheotomy is needed for people dependent on mechanical ventilation for a long period of time. Since we don’t expect Mark will be capable of breathing on his own, I recommend we do this procedure now.” Reaching up and pointing to the indent at the base of his own neck, he explained, “Through an incision in the neck we will cut in the front of the trachea and make a small hole for a trach tube.”

Trach tubeThe words were foreign—a tracheotomy and trach tube? In my nearly 32 years of life, I never knew or heard of anyone who had this procedure done. I might have learned about it in one of my health classes at school, but I couldn’t remember. As my brain scrambled in search for information to understand the meaning of a tracheotomy, what came to mind was a M*A*S*H episode on T.V. where Father Mulcahy performed an emergency tracheotomy which was guided by the surgeon Hawkeye over the radio. Great, my brain could only recollect a tracheotomy from a T.V. series filmed in the 1970 – 80’s based on three doctors in the Korean War on a temporary army camp.

Doctor Hinchey interrupted my thoughts by handing me the form to sign giving him approval to do the surgery. The M*A*S*H flashback made me appreciate the skilled doctor who brought me the shocking news and approval form to be signed. No matter how bad it seemed, I knew it could be worse. I was grateful the surgery was not being performed by an army priest getting directions over the radio by an absent surgeon. Fortunately, it wasn’t being done in a temporary operating tent which had several beds in it and usually a few operations going on at the same time in the same tent while the sounds of war explosions were in the background. Yes, life could be sadder.

TraceotomyMark survived his second surgery in three days, but seeing the plastic trach tube coming out of the base of his neck, which was connected to a ventilator, was unsettling to me. Mark was peacefully in a coma, unaware of the pumping sounds of the tubes which kept him alive. It was hard for me to watch the nurses when they came with a sterile container which held supplies to clean the tracheotomy twice a day. They had to clean around and replace the gauze under the curved wings on each side of the trach tube. This holder was secured in place by ties that went around his neck. The tracheotomy seemed invasive and the sight of it disturbed me, but the suction of his secretions was worse. I shuttered every time they used the catheter to suck out mucus and fluid.

I missed hearing his voice and now the tracheotomy made it impossible for him to talk. I kept hoping every day would be the day he’d wake up and end this nightmare. After a couple of weeks passed and he showed no sign of gaining consciousness, my dad and brothers took turns spending the night with Mark so I could go home to be with the kids. They often told me how much they missed Daddy and I’d tell them I missed him too. It was hard for a seven- and eight-year-old to comprehend how I could miss him because they knew I spent all day with him. It seemed strange to me also. They wanted to see him and asked me nearly every night when they could, but I was afraid the sight of the tracheotomy and other tubes would scare them.

Answering MachineOn my first night home, after the kids were in bed, I pushed the incoming message button on our telephone answering machine to listen to the messages recorded. After returning the calls, I pressed the outgoing message button to hear Mark’s voice on the second cassette tape. You’ve reached the Wilson residence. Sorry we missed your call. If you leave your name and phone number, we’ll get right back to you.” Tears escaped my eyes as I longed for him to “get right back.” This became my nightly routine. I loved hearing his deep voice while each word was pronounced clearly. I didn’t want to forget the sound of his voice and hearing it helped me sleep at night without him by my side. This simple, but now treasured recording made me feel close to him.

The longer he was comatose the less likely it seemed he’d come out of it, but as anxious and impatient as I felt to see his eyes and hear his voice, I realize he had too many serious health issues to wake up. I knew all his energy needed to go to fighting infections and healing his traumatic brain injury, but all the knowing and understanding didn’t stop me from wanting him to respond to me. Every day I’d read to him and hold his hand. I brought a cassette tape recorder from home and played his favorite music. I whispered sweet nothings into his ear, hoping he would open his eyes. When that didn’t work, I tried provocative or shocking words. Anything and everything that I thought would arouse or surprise him to the point he’d open his eyes—but no response. I was powerless to wake him up, yet every day I tried.

My days were filled with talking to the doctors, nurses and therapists caring for Mark. I got to know them and appreciated their skills. At least twice a day the physical therapist would do simple range of motion exercises to stretch Mark while we visited. I felt like I knew her pretty well after a month, so I was surprised to learn from a nurse that the physical therapist had a brain injury herself.

“I’ve heard you were also in a car accident a few years ago and were in a coma yourself for a short time.” I stated.

“Yeah.”

“Why didn’t you tell me,” I asked.

“My injuries were not as extensive as Mark’s and I didn’t want to give you false hope.”

“False hope? Without hope what is all this care for,” I asked.

I was hurt and discouraged. It seemed that not one doctor, nurse or therapist believed Mark would improve which felt like a betrayal. They were continually squashing my hope with their negative statements and statistics. Their knowledge kept him alive, but I began to realize that without hope for improvement, life would be worse than death…because this was no way to live!

Without hope life loses purpose. Is there such a thing as false hope?

Life is Sweeter with Friends

One Friend

The world would be a dark and lonely place without friends and we can learn so much from others. Lynne and Craig Zabriskie are an example of strangers reaching out to me, which had a positive impact on my life. Even though they had their own struggles with rehab and recovery, they took time to befiend me. Their experience gave them the ability to truly empathize with what I was going through. I learned from them that your own burdens are lightened when you reach out to help another. Their example has encouraged me to do the same for others.

I realize when I’m focused on my own problems it’s easy to feel abandoned by people. As my thoughts and energy are focus inward on what I need and not on what others may need, I feel alone. Those are unhappy days and days I need to remember that to have a good friend, I need to be a good friend.

Spreading the love to those around you can make a difference in someone’s life today and every day. You don’t need an excuse or a special day to show someone you care. If one friend can change your whole life, how many lives can you change by being a friend?

Think of friendship in terms of sugar. The body has a natural need for sugar, but as we eat balanced meals this need can be met. Fruits, vegetables and other foods naturally produce the sugar that our bodies require. If we’re eating a mixture of healthy foods, we don’t need to add more sugar to our diet. Likewise, we shouldn’t depend on just one person to meet all of our needs. If we depend on one, we are doomed for disappointment and miss out on other great friendships. A variety of friends will make life sweeter. When we are engaged in healthy relationships such as family, friends, community, and others—then we will naturally receive love from a diversity of sources. Of course, it is difficult to have totally healthy relationships with everyone all of the time, which is why it’s important to have an assortment of relationships. Just like it isn’t healthy to eat only one type of food, it isn’t healthy to rely on one person to fulfill all your needs—especially if that one person is you.

In order to feel love, acceptance and understanding, you must be able to give the same to someone else. To have a friend, you must be one and one can change your whole life.