Reality TV

   Several weeks ago, while channel surfing, my husband and I stumbled across "My 600 Pound Life" and we were immediately struck by the exploitation of the main characters in the show. These are real, live people - real human beings - with poor self-esteem and deep-rooted long-standing troubles, who need mental health counseling, at a bare minimum.
   Like watching a train-wreck, we were sucked in to the drama surrounding the family lives of these people, their seemingly uncaring doctor, and the relationships affected by their situation. Over and over I wanted to scream "go talk to someone!" I turned it on again recently - purposely, this time - to see if the episode had the same ending: overweight person struggles, overweight person continues to overeat, overeating affects the entire family, doctor scolds overweight person, etc. Sadly, it didn't end the same way. It ended with a single mother of six children dying. My husband and I cried on the couch in our living room and shook our heads.
   It occurred to me that their shocking stories are not much different than our own. When my husband was hit by a car in 2010, we didn't expect that his life would change forever. I didn't expect my life to change. I didn't expect that his brain injury would affect every relationship in our circle and every relationship that our circle touched.
   Similar to those people on TV who struggled with losing weight, we also struggled, and continue to do so today. When did our society decide it would be a good idea to take advantage of people less fortunate than ourselves? When did we decide that mental illness belongs in our living rooms, to watch like a dogfight, where someone always loses? The series about hoarding is another example of big networks making money on those with mental illness. What happened to our society?
   Wouldn't it be nice if "reality TV" showed those who are struggling with something they had no control over - an accident, a beating, a stroke - and how they're overcoming their challenges? I'd love to see a weekly series about people re-learning to walk, to speak, surrounded by hope and love, and how they begin their new journey, with "Where are they now?" updates every so often. I'd love to see a show about how families and communities can unite their resources to support someone new to brain injury.
   With all of the new traumatic brain injuries occurring in the world today, why wouldn't we want to be fascinated by resiliency, learning, and the power of love? The networks should focus on the real over-comers and become a voice for those who have lost theirs. Life isn't about ratings; it's about making a difference.

 

Over-sharing

   One of the most difficult pieces of my husband's dis-inhibition as a result of his injury is over-sharing. I'm usually pretty private and tend to keep our personal lives private, but he shares just about everything. We talk about it regularly, so I'm not betraying any secrets, but sometimes it bothers me. He's gotten much better about this, especially when it comes to events that are personal to me. Now and then he will ask if he can share something, but then there are times that it's too important not to post and it's out there for about two thousand of our closest friends.
   As with most of the new pieces of our journey, I've come to accept this need to keep the social world abreast of our doings. I wonder if other survivors do this and how we as supporters can accept it more easily.

On PTSD and My New Life

   My company recently modified its security program to include "active shooter training". While I made it through the class, I wept through most of it, and needed to work from home for the remainder of the day afterward.
   When my husband was hit by a car, I was affected in such a way that makes violence, terror, and trauma, events I can't handle anymore. I can't watch those types of drama on TV or in the movies; the news is regularly so disturbing that I don't watch or read it. Today, we as a community casually talk about people being murdered, news agencies play footage of police shootings, even some sports are violent for me. Somewhere along the way, the fact that life is sacred was lost. The thought that bad things can happen to everyone is reinforced in all the media around us and it deeply affects me.
   I was not surprised when my husband was told he had PTSD. He was hit by a car! I think I'm dealing with secondary stress, though I'm self-diagnosing. The sound of an ambulance wail brings me to tears, so do babies crying in the market, and roadkill. The problem, I assume, is that I'm no longer innocent. I'm no longer one of the untouchables - those who float through their lives without anything extreme or tragic happening.
   The "worst case scenario" already happened when my husband's accident occurred and my family was affected. The abrupt change in our lives still affects me daily and I'm always on edge for what else will come along, which brings me back to my safety training at work, surrounded by my peers.
   In the sterile conference room, we had a lecture, followed by a graphic video. There was another lecture, and an even more graphic video. I watched bits and pieces of the first video, but the immediate shooting at the beginning of the second video caused me to avert my tear-filled eyes and stare at the floor until it was over. Thankfully, no one commented on my not paying-attention to the screen.
   The program concluded with our security director saying "if you are forced to fight, fight until it's over." I guess that's what I've been doing.

Support groups

   When my husband was first injured, we didn't know that our lives had changed forever. We thought we were dealing with some broken bones and torn ligaments and didn't realize his brain was somehow affected. As time passed, his friends slowly disappeared and mine stopped asking how he was doing.
   We still had five teenagers in the house at the time and none of us really knew what was okay to talk about, and when. We did a lot of walking on eggshells and worrying about what might topple the cart - there was a lot of crying and lot of frustration in the beginning. Slowly, his children stopped calling. He has four boys and none said "Dad, I'm upset because ________." They just stopped talking to him altogether. All four of my children still lived with us and we had a lot of conversations that started with "David is upset. Don't mention _______." We lived for about a year like that.
   One day, David found a nearby support group for "Mild" TBI survivors, which was just being formed. He told me he thought he had the wrong room at the rehab, because everyone looked normal. (Ha, normal.) He cried the rest of the night. He found people like himself, trying to find their way through the confusion. He was over-joyed that he wasn't alone and that people would accept him just the way he was, because they were "broken" too.
  After a couple of months of watching him head off to his meeting and come home full of hope, I decided I wanted the same thing. In our area, there were no "caregiver" meetings and the closest I would get to sharing my journey with others was by attending his meetings. Every now and then another spouse would attend and we would share, but for the most part, everyone seemed like they were moving on and I was stuck.
   Enough time has passed now that I know support groups aren't for everyone. Sometimes, I need to talk with someone else and feel connected to something outside of my current reality. Living with a brain injury is difficult. So is living with someone with a brain injury. Seek support if you need it. A burden shared is a burden halved.

On Being Grateful...

   Being grateful hits me in odd places sometimes, and I realize that the things I take for granted could be someone else's wish or prayer. I've woken up every morning, so far. I have wonderful children who strive to be good human beings. I love someone who loves me back. I have a roof over my head, food in my belly, and a warm place to sleep. For these things I'm thankful.
   I've met a lot of people on this TBI journey. Some of those have lingering effects from their injury and they struggle. No matter what age, TBI is never easy. Young people - the ones whose brains adjust most quickly to change - struggle with the loss of friends and have trouble in school. Older people struggle with the loss of identity and the adjustment to the changes taking place in their bodies.
   A little more than five years ago, my life was changed due to a TBI. My husband was not the man I married, but I changed too. Time has passed and the universe has been generous to us. We still like each other! Today, I am thankful for the passage of time. I'm also thankful for the kind hands and hearts that reached out to us along the way. Prayers for all who struggle, young and old.

Advocacy

   If you had asked me before my husband's accident what advocacy was, I would have responded that it's when you fight for something bigger than yourself. It would include things like impoverished countries, hungry children, and abused dogs. Today, it means something else.
   Prior to my husband's injury, he was self-employed and I carried the health insurance through my employer. Our deductible was $10,000 and we were very careful about visiting the doctor unnecessarily. We muddled through things like sprained ankles, the flu, and ear aches. The joke in our house was "don't break anything" because it was too expensive to fix.
   When my husband was hit by a car in November of 2010, we quickly ate up our deductible. Two months later, in January, the clock was reset and we had to choose what treatments he could and couldn't have. Sadly, this reality exists for many people and can contribute to the loss of employment, stability, and lifestyle requirements, because rehabilitation is so expensive.
   After being told by my husband's neurologist that he didn't know how to treat PTSD, tinnitus, and our other post-concussive challenges, we realized we were on our own. I was angry for awhile; my husband was sad, frustrated, and despairing. My view of advocacy changed from doing things for others, to fighting for ourselves.
   We found support groups, for him and me. We made connections with agencies, people in similar situations, and became vocal about our needs. At first, it was really difficult to ask for help and to admit to the world that we couldn't do it on our own. But we did it, and today we are able to help others in the same situation.
   Fight for what you need. Be vocal on your own behalf. If you have the opportunity to help someone else, do it. Advocacy is a challenge, because it's needed when people are most vulnerable. If you're unable to speak up, ask someone to do it for you. We're in this journey together and it doesn't have to be dark anymore. Shine a light on what you're capable of and you can help lead the way for others.

Being Thankful

   Last night, while trying to fall asleep, I heard my phone receive several text messages. Worrying that something else will befall someone I love, I decided that I should check to see who was looking for me.
   It was a young person whose journey is relatively new. She wanted to say Hello and update me about recent events in her life. She said that she was making connections with other people and that she was thankful for who she is and how strong she has become.
   Years ago, while my son was undergoing chemo for leukemia and we were unsure of our future, someone told me about "crap" sandwiches. This person said that my crap sandwich was having a child with cancer. Someone else's crap sandwich may be the loss of a child, their job, or getting in a car accident.
   Today, I am thankful for my crap sandwich. I would rather have mine, than anyone else's.