Saturday, April 30, 2016
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.
Friday, April 29, 2016
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.
Tuesday, April 26, 2016
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.
Sunday, April 24, 2016
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.
Saturday, April 23, 2016
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.
Friday, April 22, 2016
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.
Thursday, April 21, 2016
My husband and I were discussing colors recently, and though I love them all, my favorite color is green. For me, green symbolizes growth: hope for the future, faith that something will come from nothing, and the dynamic change that happens in the world of new beginnings.
Growth means we're changing in a way that makes us better, stronger, and more capable. I hope you find some green in your day today.
My husband tends to be an over-sharer and our life is an open book and publicly displayed on Facebook and other social media - I have no privacy anymore. Things would happen at home, for example, like a female surgical procedure I had to undergo, and people at work mentioned personal details about it. After many conversations with my husband, and requests to not share the personal details of my life, it still occasionally happens, but I'm getting better at accepting it.
I realized recently that I no longer have any pictures of just me; they are all "us". I rarely leave the house by myself, unless I'm going to work. There isn't much I do anymore, by myself. I'm not sure if this happened because I feel the need to care for and protect him, or if it happened because he relies on me.
Self-care is so important and I frequently tell other caregivers to be sure they do something small for themselves every single day, but I don't regularly take my own advice. I was diagnosed with Fibromyalgia the year after my husband's injury. FM can be caused and exacerbated by chronic stress, and the pain and fatigue keep me pushing through most days in a fog. I work full-time and am pursuing a degree; coupled with family life, advocacy, and keeping the wheels on the bus, I don't always make time to do "me" things.
Today, I will do the best I can to praise myself and to recognize the good in the day. Prayers for all who walk this journey.
Wednesday, April 20, 2016
My husband and I were married a mere fifteen months when he was hit by a car while cycling in our neighborhood. The impact tore his feet from his bicycle where his cleats were clipped in, crushed the driver's windshield, and left him unconscious on the cold November street.
Thankfully, the accident happened a block from the fire station and when the ambulance and fire truck were dispatched, a parade of first-responders ran down the street behind them.
It was Veteran's day, 2010. I was preparing dinner for some of our eight children and a stranger called my cell phone to tell me about the accident. I remember cursing in front of our children and thanked the unknown messenger, grabbed a change of clothes for my husband, and headed for the hospital.
X-rays showed his left elbow was broken. He had torn ligaments in his right foot. The CAT scan showed nothing to be worried about. We went home and I spent the rest of the evening picking glass out of his scalp.
We saw a neurologist the next day who said we "dodged a bullet" and my husband would be "back to normal" in a couple of weeks. As weeks turned in to months, we started to realize things weren't getting back to normal.
He had memory issues, word-finding issues, and his business was starting to suffer. Many of the advantages of being self-employed disappear when a disability strikes. I was unsure how to help him and several neurologist visits later, we were on our own.
Our insurance plan had a $10,000 deductible and when 2011 rolled around (two months after his accident), we found we could no longer afford cognitive therapy, nor could we find another neurologist who knew more than we did about traumatic brain injury.
As time passed, we found great joy in new friendships and learned from the mistakes of those around us. We found we needed to be our own best advocates and we surround ourselves with those who love us and have our best interests in mind. We still live, laugh, and learn every single day.
It seemed like every organization at the conference was intertwined and connected, and my fellow attendees were connected with all the organizations. For individuals and families, this means connections - both professional and personal - were easier, kinder, and more personalized. Working together, they have a brain injury community that is able to collaborate on projects large and small. This mesh of support agencies means their reach is maximized and no one is left is to navigate some of the harsh realities of brain injury alone.
As a caregiver, I was in awe of the love moving through the rooms and halls. Hugs were being given (and received), almost as an extension of the word "Hello". I was connected with several families new to the TBI world and their fears on the first day were replaced with HOPE and a plan, by the conclusion of the second day.
Kudos to Washington's dedicated professionals for all they do to educate and advocate for Brain Injury survivors and their families!