Live and Learn

Live and learn

Several years ago my sister Rosanne said, “I often hear the phrase ‘you live and learn’, well I’m tired of learning, I want to start living!”

We laughed and the memory of the conversation still makes me smile. We were both raising children at the time, and learning all sorts of things we didn’t ever expect to learn. It’s one of those conversations etched in my memory that brings sisters or friends close as they share experiences.

It’s true sometimes we don’t get to choose what we learn. As a caregiver, often I have thought I didn’t sign up for this course, or I don’t want to know about this. There’s a certain amount of responsibility that comes from knowledge, so sometimes I think, ignorance is bliss!

In reality, it’s the unknown which causes fear. Whether it’s about a disease, injury, grief, or even raising children, the more we learn about it, the better we can handle it and usually it then becomes less dreadful. Knowledge gives us opportunity to improve and cope better. Knowledge makes us useful and compassionate. It’s the key to understanding others as well as ourselves. Knowledge makes a difference in how we live.

Because we’re always learning, we change through our experience and knowledge, therefore our relationships change. Some get better, some seem to stagnate and some come to an end. My experience is that every relationship, no matter how long it lasts, serves a purpose. Some teach us to be better than we are. Some show us what we don’t want to be, while others remind us just how blessed we truly are. Some keep pushing us forward helping us become what we are meant to be. Every relationship teaches us something. Don’t regret those that end for they were worth the effort if you grew from the relationship.

Untraveled journey

So when you get a course you didn’t sign up for or have a relationship that changed or ended, look at it as an opportunity to learn and grow.

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!

Strength in Numbers

Being StrongThe Winter Olympic Games are upon us and it is evident there are countless hours in many years of training for the athletes to compete. The hosting city and country plan and prepare four years and it’s a proud time for them as they show off their beauty and hospitality to the world. It’s sensational to watch it all unfold. Various athletes from all over the world coming together in Sochi to do their very best, showing their strengths and abilities.

It’s obvious there are many people behind the athletes as they prepare for the games. Besides family and friends that encourage and help them, there are coaches, technique specialists, apparel consultants, etc. All have the same goal and vision for the athlete to succeed. They’re amazing to watch and usually you’re only seeing one person competing, but in reality there’s a team of people standing behind the one athlete you’re watching. All making their success possible.

We all need others to succeed in our endeavors. No one makes it alone. It’s wonderful to have family and friends help and encourage us. They hear and see us with their hearts. It’s also beneficial to build relationships with others who share your goals, stress and struggles. They hear and see us with their experience. A meaningful and comforting way to boost one another. This is my goal with Uniting Caregivers. Together we can learn and improve our abilities. Sharing our stories and how we cope encourages and gives us strength.

Support groups are formed for most anything you are dealing with; addiction, brain injury, cancer, divorce, epilepsy, mental health, stroke and the list goes on. Mark and I have benefited from the Brain Injury Support Groups and the Epilepsy Support Group. We have learned much and it’s comforting to be with people who know and share our experience.

Tomorrow night a friend and caregiver of a brain injury survivor, Laura Nordfelt, is starting a new Caregiver Support Group in Murray, Utah. The meeting is in conjunction with the Brain Injury and Stroke Survivor Meeting from 7-8 pm. It will be held at the Intermountain Medical Center, 5121 South Cottonwood Street, Building 6, Classroom 8.  The caregivers and survivors will meet first together and then split into two separate groups. The facilitator, Lynn Anderson, who has a MS in Social Work will meet with the caregiver’s group.

Support groups are a wonderful way to share and improve your experience. I encourage all to Goggle “support groups” in your area to find the help and support you might need. There is strength in numbers!

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.