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.

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.

Survivor—Nich’s Story, Part 2

Continuation from February 16, 2014, Survivor—Nich Sorensen’s Story

Written by, Jamie Sorensen

Sorenson Family

From the time of the car accident in 1999, Nich has gone from one job to another.  Having a brain injury makes it extremely difficult to do even the most mundane jobs. He can “land” the job, but keeping it is a whole different story. For the last 5 years, he has been our stay at home parent, while I work outside the home. There are days he struggles with the fact that he can’t work.  He’d love to be able to provide for his family and goes through ups and downs of feeling helpless. As often as I tell him that being a stay at home parent is more demanding than most jobs, he still has a hard time realizing he can’t hold down a normal job, or work a regular 40 hour a week job – it’s not physically or mentally possible.  Having him stay home with the kids has its definite advantages!  One of the side effects of his brain injury is OCD; it comes in handy when he does the cleaning! To me, his “job” is priceless.

Emotional insecurities are another struggle.  Almost everyone that Nich was close to at the time of the accident, are now gone.  People have a difficult time understanding what he goes through and deals with on a daily basis.  When you look at my husband, you see a “normal” looking person; nothing stands out, or screams “I have a brain injury!”  They are quick to judge, quick to think that he is lazy or unproductive, quick to think that he is ‘normal’ and should be doing everything a ‘normal’ person is doing. Many think his brain injury miraculously healed because they can’t see it.  It’s hard for people to remember what he went through, and what he will be dealing with for the rest of his life. Since the accident, Nich sometimes doesn’t know how to feel, and has a hard time expressing grief or sadness. There are times when he knows he should be sad, or cry, but he can’t.  There isn’t a day that goes by, that he doesn’t think about the accident, or about his best friend Melissa.  It’s taken Nich years, to try and learn how to deal with his emotions of grief, sadness, loss, guilt, anger, and resentment. It’s still a work in progress, but he’s making improvements.

Life feels lonely and secluded at times.  So many people have refused to take the time to understand what happened to Nich, or care about what is currently going on with his brain injury.  Sadly, the people in our life (with the exception of his sister Amanda – who has remained such a close friend to Nich) have failed to remember the trauma that Nich’s brain and body went through; that it is something he will be dealing with for the rest of his life.  We have ourselves, our three amazing children, and Nich’s fantastic neuropsychologist (who has been a true lifesaver time and time again). We don’t have outside help. It’s very exhausting at times, both emotionally and physically. I wish I could quit my full time job, stay home with the kids, and be a full time caregiver for my husband.  Then I wouldn’t worry and stress so much when I’m away, and could be more helpful around the house. I also wish I could help him realize we will never abandon him and he will not be alone.  My goal is to help others realize what he deals with every single day, and understand that his brain injury won’t just magically go away.

Sorenson kidsOur kids have had to grow up a little faster than we wanted.  They know their Dad’s brain isn’t like everyone else’s, and he struggles with things most people don’t.  They have to be patient and explain things more than once. They can’t always go outside and play when Dad has an “off” day. If I’m at work, they have to stay home and play inside, so they can keep an eye on Dad. Because he can’t drive, they have to walk a lot in the summertime (a good thing!). They know that Dad doesn’t remember things (no short term memory), and has A LOT of doctor appointments!  Sometime they wonder why Dad isn’t laughing with them when they watch movies and something funny happens. When we go on vacation, they feel bad, because Dad can’t always participate in everything (like ride all the rides at Disneyland); he has to sit on the ‘sidelines’ watching.

The kids know Dad loves them and would do anything for them. They have him wrapped around their little fingers! If they ever want something, they ask their Dad first; if they have any problems they deal with Dad, rather than wait for me to come home. Dad is the fun parent. When he’s feeling okay, he’s the one who will play basketball, video games, walk to the store to buy treats with them. Dad is the one who begs and pleads with me to let them stay up late, and go to school late on occasion.

Silly Sorenson familyHaving a brain injury has completely changed my husband. I can’t honestly say that the struggles we deal with have gotten any easier over the years—they’re just different struggles now.  Even with his injury, he is an amazing, wonderful, astonishing husband and father; I couldn’t hope or want for anything more. Knowing all that I know now, I’d still marry Nich in a heartbeat.

I just want to send a quick THANK YOU to Ann, Amanda, the BIAU, Barbara (for this amazing opportunity), Melissa (in our thoughts every single day), the Benson Family, and to all of you out there who are taking the time to read this story.  Hopefully there will be something in our story you can relate to, or help you understand what someone else is going through with a TBI.

Thank you Jamie for sharing your thoughts and feelings. Nich truly is a survivor!

Survivor—Nich’s Story

Written by, Jamie Sorensen

Our story began more than fifteen years ago. I met my husband, Nicholas, in high school; we were just acquaintances in our junior year. Nich sat behind me in our history class; he usually slept, or doodled on his homework, and then asked to copy my notes. He was very outgoing, social, and flirtatious. We were complete opposites and after high school, we went our separate ways.

Jeep accidentOn Saturday July 24th, 1999, at age eighteen, Nicholas was involved in a horrific rollover car accident. After spending a week at the Sand Dunes, Nich, his friends and family, were driving home in three separate cars. Nich’s family was in front, followed by Nich and his two best friends Melissa and Sean, and bringing up the rear was Melissa’s family. Nich’s Mom, Dad, and sister, in the lead car, lost sight of Nich and his friends, so they pulled into a rest stop to wait for them to catch up. That unfortunately never happened.

At approximately 6:34 p.m. near Tremonton, Utah, the Highway Patrol received multiple phone calls from witnesses, saying that a white Jeep hit the center median, swerved, over corrected, and rolled two or three times end over end. Nich and his friends were thrown from the vehicle. The driver, Sean, had the least extensive injuries; he was awake and talking. Nich, unconscious was taken by ambulance to the local hospital in Tremonton. Melissa, suffered the most serious injuries, and was life lighted to the University of Utah hospital. Tragically, she did not survive.

Nich was at the Tremonton hospital for a short time. He had difficulty breathing, because his lungs were filling with fluid. They transported him immediately by ambulance, to the McKay-Dee hospital in Ogden, Utah for two days, and then another transfer to Cottonwood hospital, for the next three days. Upon his release, he was referred to a neurologist (for the brain injury), and attended rehab three times a week for six weeks. He had to re-learn how to walk, talk, eat, and do all the everyday functions we take for granted. With the Traumatic Brain Injury, he began having multiple seizures.

In 2007, I stumbled upon Nich’s name online, through our high schools web page on MySpace. We were both coming out of unhappy and unhealthy marriages. I sent him a message saying “Hello do you remember me?” Surprisingly he did! We started talking a lot; learning everything about each other since our junior year of high school. We dated for a year and were married, February 17, 2008.

I knew, about Nich’s horrible accident before we got married, but I couldn’t have fully known what my responsibilities would be as the wife of a TBI survivor. You can’t prepare for things you’re going to have to deal with until you’re actually living with that person on a daily basis.

Nich has had two major grand mall seizures since the accident, but he suffers from petite mal seizures almost daily. He’s currently on three different seizure medications, all at maximum dosages, which keep the seizures at bay for the most part. A year and a half ago, Nich blacked out, fell and hit his head in the shower, causing another concussion. Two days later a golf ball size hematoma showed up on his head, and he started throwing up. The concussion caused his seizures to become more prevalent again. His driver’s license was taken away and since then, he’s had some major setbacks. He often forgets how he got from upstairs to downstairs. He has fallen down our staircase due to another black out.

Nich & JamieI could’ve never expected many of the things we’ve had to deal with the past six years, but I don’t regret a single second of it. It’s taken a lot of patience and understanding. I’ve had to learn how my husband’s brain works. I’ve had to change my expectations and how I do and say things to him.  Nich is one of the strongest people I’ve ever known.  He is loving, kind and compassionate. He says what he’s thinking, when he is thinking it. He is romantic, sensitive, and takes great care of me and our three kids. He constantly puts our needs before his own, and is always seeking ways to make others happy. I feel so lucky to have my husband at home with our kids every day; he’s a tremendous father. I feel so blessed to be married to my best friend who helps me appreciate the little things in life. I try to be thankful for what we have, and try not to stress about the things we don’t. My husband and I look forward to every day we get to spend together.

It’s true, I wouldn’t have married that “boy” I knew back in High School, but the man I know now (post TBI, and accident), is the love of my life.

Jamie will share more of their story next Sunday, with Survivor—Nich’s Story, Part 2. Thank you for sharing your heartfelt story.