The year 2016 is coming to a close and 2017 is full of hope and promise.

Looking back through the year, there were several really wonderful things that happened. My first grandchild was born in January. She’s a beautiful princess and I’m loving being her Nana.

My husband and I visited Disney, but after a snowstorm cancelled flights up and down the eastern seaboard, our five day vacation turned into a two-week work-cation. I know I probably won’t get much sympathy on this one, but it was unexpected and expensive.

We had a plentiful garden this year, and a yard full of beautiful sunflowers planted by roving bands of chipmunks and squirrels.

Knowing that there’s never enough time, we took my in-laws on a cruise to the Bahamas. Laughed, loved, and realized this is probably the last year we’d ever be able to do this with them, ever.

The summer was warm and autumn trudged on through. My beautiful Siamese passed away from kidney disease for Halloween. Trump was elected. Then we coasted to Thanksgiving, when the proverbial wheels fell off the bus.

A series of recent events made me pause, 1) To be thankful and, 2) To move forward without any more reflection.

• Starting the month, my husband hit a pedestrian who ran onto a highway on-ramp, into the path of his car. It reminded him of his accident when he was hit by a car and we spent a week worrying about this stranger and what she was doing in the dark on the interstate.
• My husband was cycling in our neighborhood when a dog got loose from its owner and bit him. (Aside from fear and dogs being PTSD triggers, he is okay.)
• Last Friday, the company I worked for was acquired and my position was eliminated.
• To start this week, our fully-decorated Christmas tree fell over, shattering several cherished glass ornaments. The carpet may or may not still be damp from all the water that was in the tree stand.
• Just yesterday, I was issued a $75 ticket for failing to have my car inspected. (It’s an annual requirement here in NH and I just hadn’t found the time to get it done.) The car hadn't been driven for weeks, but I needed to go to work to turn in my company assets.

This is where I finally decided to give thanks for a complete year. I’m looking forward to 2017 with much hope!

J We’re getting the hang of living with a TBI and choosing things that are good for us.

J The kids, most of them, appreciate our limitations and accept the way things are.

J I live with a roof over my head, food in my belly, and a warm blanket for sleeping.

My wish for you for 2017, is that you’ll find support in your relationships; you’ll seek care for yourself, and you won’t get too overwhelmed with “life”, to enjoy life. I appreciate you and this group of safe humans... remember that you’re in my circle of love and I can’t do this without you.

I need a break!

     I've been in school for several years, studying Project Management. Coupled with the demands of life, work, family and the obligations that go along with having friends and doing things I enjoy, I have found little time for myself - specifically, my health and my happiness. My current school term will complete in a week and I am taking a break for eight whole weeks.
     Caregivers and those supporting others frequently put themselves last on the list of priorities. It can be come a slippery slope where we're neglected long enough that our health and our own supporting relationships can be affected. Find a way to do something for yourself today, even if just for a couple of minutes.

Juggling

     Lately, life has gotten a bit hectic. Between work and some new demands there, home and some new challenges there, and school... well, don't get me started about school; it seems like all I do is juggle everything without really getting anything done. I'm due for a break - soon. My current term at school is over in three weeks and this girl is taking a break. Today, I'm not sure I can muster the strength to go back after an eight-week hiatus. Ask me about it in a couple of months.
     I know what I'm walking through is normal, but that doesn't make it easier. If I get around to comparing, I can envy my friend who doesn't have to work and stays home with her children, or the one who loves her job and gets everything she needs to feel complete from her family and church.
   Perhaps this is what it's like to be a grown up: staying busy all the time, until I'm out of time? For now, I guess I'll be content if the balls I'm juggling stay in the air. Peace to all who are making it work - even when it's hard. I have faith it'll get a little easier.

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.

My Favorite Color?

   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. 

Self.

   At some point, my "self" became part of my husband's "self" and vice versa. I no longer say "I'm going to..." Instead I say "We're going to..." At first, this fact bothered me.

   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.

About Our Journey

   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. 

Washington Loves Brains

   This week, I was able to attend the Washington State TBI Conference in Seattle, and it was an amazing experience! Over the years, I've had the opportunity to attend several Brain Injury conferences, but I've never experienced the true spirit of COMMUNITY that exists in the state of Washington. Support groups took long trips - a four-hour drive for some - to reach the two-day conference, and those I spoke with were happy to be there.

    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!