Our Easter Wouldn't Be Complete Without a TBI Story

As I read through everyone’s Easter recaps and scrolled through the smiling faces on my Facebook feed I needed to remind myself that my journey isn’t going to look like your journey.  Every family has its quirks.  We had a perfectly lovely Easter.  The girls enjoyed coloring eggs, did not enjoy eating them.  They were super excited for their baskets and new basketball hoop.  They got to play with their cousins and have an egg hunt at their grandma’s house.  What they didn’t get to do was spend the day with their father.  His head prevented him from joining us on the trip to my stepmother’s house.

Looking back at last week I am not surprised.  I should have known but sometimes I forget that we aren’t a “normal” family and I let go of some of my self-preservation techniques.  Last week was just a crappy week; work was really getting to me, I was really missing my girls, I had a minor car accident that left me hurting all week and some unthinkable things affected people I love.  I was in more than a funk, I was in a depression.  I tried to hide it but I couldn’t so I tried to talk to Will about it.  I knew I shouldn’t have, when I am having a hard time with how our life has played out he has a hard time understanding that it’s not his fault.  When I really just need to vent and cry and be told that things will be OK I usually end up having to reassure him and I am left worse off than before.  It’s not his fault – I know this and I am not mad at him for it but it is so frustrating.

I don’t want to keep things from my husband, I love him and want to share everything with him but at the same time I want to protect him.  My unloading on him made him upset and stressed and with the anxiety of a large Easter gathering hanging over his head his body reacted.  5 years after his accident he started experiencing a “concussion headache”.  He has several different types of headaches and having never had any of them I can’t really talk about them but he said he felt as if he had just gotten the head injury.  Because of this he knew that he would be able to handle a loud house full of people, so that is why we spent Easter apart.

He was there for the girls’ baskets and when we got home he heard all about their day but he wasn’t there.  I had a great time with my family and it was nice to not have to worry about how he was doing with my family but I would have rather of had him there.   

We have done a pretty good job adjusting to what is normal for us but it doesn’t mean it doesn’t hurt. 

I’m Sorry I Keep Us From Things

“I’m sorry I keep us from things.”

Will said this on Saturday night.  I can’t even remember what we were talking about – it wasn’t important.  When I think about this little blog just sitting here collecting dust I often have no idea what to tell you folks, my life is just like yours.  I wake up, shower (most days), feed the kids, go to work, come home, eat, hangout with the kids, bedtime kisses, gym, bed.  Seriously, nothing spectacular.  There are no major daily events that say “hey world, we’re a TBI family!”.  For the most part our little routine has fit in his TBI so well that it just is.

There are some things in our world that are nowhere close to normal but we’ve adapted so well that it seems normal.  On Twitter I’ve talked about The Zac Brown Band playing at Fenway on my birthday – sounds like a perfect date night!  I’m turning 35, I would love nothing more than to celebrate that with my husband in my happy place listening to good music.  I asked him to think about going – I gave him a few days to decide if it would be too much for him.  Ultimately he decided against it.  Concerts are out for the foreseeable future, the crowds, the loud music, the loss of control.  It just isn’t something that he can even think about without anxiety.  Sure I was bummed, he’s my first choice date for everything but after I had my brief “woe is me” moment I asked if he would mind if I went anyway, he doesn’t mind at all. 

This is why this works.  THIS, this team we’ve created.  For so long it was him & his TBI against me.  It almost broke us. 

It’s OK for me to take a moment to be a little pissed about some of this.  It’s not fair that things have changed so much.  It’s not fair that he lives with so much pain and anxiety.  None of this is fair but that life.  We take our moments to be pissed them it’s over.

But I don't really think he keeps us from anything, we just do things differently now.  Like I've always said when things get hard - he came home.  I might wish he could do what he used to do but I am just lucky to have him at all, he came home. 

It's Allowed (updated)

Updated 2/26 5:30PM-
I pulled into the driveway and noticed that the car had moved...he went to the store!  I had to hold back my tears, I was on the phone with my sister and just kept saying "oh my god, he went to the store, he went to the store!"  Knowing what a major step this is she was so happy for him and me.

Today I am reminding myself that it is alright to allow myself to be frustrated with the changes Will's TBI has brought into our lives.

I am allowed to not love being solely responsible for anything that needs to be done outside of the home and for most things inside.

I am allowed to be disappointed when he says he's going to do something but his anxiety gets the best of him and he doesn't even try.

I am allowed to want a release from the stress that all of this causes, knowing that there just aren't enough hours in the day.

I am allowed to be hurt when he is so wrapped up in his own issues that he doesn't even acknowledge when I tell him I am having issues as well.

This is a struggle and just because it's been 5 years since his accident the struggle hasn't gone away.  I'm having a hard time today, I am having very selfish thoughts.  Well, I don't know if they are selfish, they feel selfish because I truly do understand his issues but if he would just try, to go to the market it would make me so happy.  Even if he gets there and can't go in...I don't know, like I said I am being selfish but as long as I can get over it this is allowed too.

I Can Do That

When I decided to put the excuses down and get healthy there was one driving force: my girls.  They have been robbed the super physically active and healthy father that Will would have been thanks to his war injuries so I wasn’t going to rob them of a healthy mother as well.  Many times when things got hard I reminded myself that what happened to Will is irreversible, we have no course other than to accept the hand that he’s been dealt and live the best life we can given our circumstance.  This doesn’t mean we stop hoping and celebrating the advances he makes in his recovery but we just know not to count on anything and appreciate everything.  I can’t even remember how many times I said or thought “one of us has to be healthy” when I really wanted to give up and eat a jar of Nutella and that’s really been my battle cry.

This winter has been a bitch.  The snow has been record breaking and unlike anything I’ve ever seen, even as a seasoned New Englander.  We have our driveway plowed by our landlord but the walkways to the basement/laundry, to the driveway, and a place for the dog to do his business, those all fall on us.  During the first blizzard Will was out there every few hours busting his ass to keep ahead of the accumulation and the next day we thought that he was going to be fine after all of that physical labor,  he didn’t have the headache or stiffness that he usually had after physical activity so we started to think maybe the worst was over, but we were wrong.  Two days later he was throwing up, unable to move, irritable and just miserable.  He pushed it too hard, he just can't do that any more.

Over the next month of storms I knew it fell on me.  I didn't mind, I welcomed the new workout - I hate snow and cold but I didn't have a choice.  Growing up I never shoveled, that's what brothers are for so I really had no idea what I was doing.  After my first round I figured it out, push with my legs, use my abs to get it over the high snow banks...it was hard work but I could do it.  I had to do, one of us had to and thankfully one of us could.

This isn't a hoe-hum-look-how-hard-my-life-is post.  This is more of a, hot-damn-I'm-a-bad-ass-and-I-can-do-this post.  Had I let myself continue down that unhealthy path I was headed down I don't know what we would have done, 2 years ago I was not strong enough to shovel out of 4 inches of snow, 34....forget it.  But now, well now - forget it, I've got that!  I may not be 100% happy with how I look, I have some body image issues to work through, but grabbing a sledge hammer and removing inches of ice from my walkway yesterday, that was empowering.  I highly recommend it.

I am not saying I loved every minute out there but when I wanted to complain about all the hard work I thought about all those people who simply can't shovel and I was grateful.  I am able, I am strong, I am a member of an amazing team.  I know Will has so much guilt and a bruised ego about not doing the "man's" work but like I said, we can't change the past but we are making the best of where we are now.

Hard Days

While things are going pretty well here the TBI and all that comes with it is still a major issue in our family.  Most days we can pretend it doesn’t really exist, I’d like to think it’s because he’s so much better but the real reason is that we’re so much better.  For the most part we can recognize issues coming and do our best to work around them and when we can’t work around them we’ve done a better job dealing with them – for the most part. 

Some days we are both blindsided, or I am blindsided and he’s in such a state of denial/delusion that the thinks he’s fine.   Yesterday was a very hard day.  He woke up feeling “dead inside” unable to really handle human emotions.  When this happens he’s just really hard to be around, he snaps and yells and is beyond irrational.  I have to watch every little thing I say.  Yesterday I didn’t watch my words close enough.  He was telling me that a text that was sent at 10:00 didn’t reach him until 12:30, the text was Mrs. Pastor requesting his presence at church at 11:00.  He had already decided he wasn’t going to church and all I said was “well if you were going you would have to be out the door by 10 anyway.”  I was just blurting out the first thing that came to mind and pointing out that he should really feel bad because the text came too late for him to even act on it if he had wanted to go.  This turned into him screaming at me that they weren’t asking me to go and I need to get over myself.  The time wasn’t the point he was pissed that he didn’t get the text.  Not everything is about my and I need to chill.  I blocked out the nastier stuff, and then he stormed off. 

I know that it’s not him.  I know it’s not him.  I also know it’s not me.  But it is him and me.  He may be dead inside on a particular day but I’m not.  I still feel, I still care, I still hurt.  I feel and care and hurt a lot.  Too much. 

He later came over to me and told me that he wanted to apologize but in his current he doesn’t think he is wrong.  He said that tomorrow he would know he’s wrong, like he has in the past, but given how his brain was working that day he didn’t think he was wrong.  Then he got upset that I was crying, upset with himself for doing that to me.  I hate to let him see me cry because it sends him further down the rabbit hole, telling me not to let him get to me and that I can leave and take everything because I shouldn’t be married to someone who make me cry. 

I cry about our life every few months.  I’ve done a good job finding other ways to vent my anxiety and frustration.  But I do cry.  It’s hurts to hear the person you love say hateful things to you.  To accuse you of hateful things.  To have to tell your kids that you were thinking of something sad and that is why you are crying.   

Loving someone with brain damage is a tricky thing.  Even when you know that his brain doesn’t work like it used to the realities can still catch you off guard and crush you to the core.  Today I am still trying to recover, my heart is pretty broken and I can’t shake the feeling that I am not good enough.  I’ll be fine, I’ll take it out on the treadmill. 

Fun At The VA - Not Really

When we left the army Will was told to go home and within the next few weeks we would get a letter telling him when his first appointment would be.  We waited, waited, waited...and waited and nothing.  Well long story short, the paperwork was never filed and he wasn't assigned to the VA.  We took care of that in June and in July he got a letter for an appointment in August.  The week before his appointment he was called and told he was being pushed out another month into September.

He pretty much lost his mind on the woman who called and told him this was unacceptable.  He is a 90% disabled vet who hadn't seen a doctor in over 9 months and they were going to push him out another month.  He told her that he wasn't going to let them do this to him and he WOULD be seen much earlier than September.  Before hanging up he made sure to ask that he not be put in a secret file where he wouldn't be seen until months after his death.  A few hours later he got a call that an appointment happened to open up a day before his original appointment...imagine that.

He's been going to the VA in Providence, RI because it's really close to where we are in Massachusetts but he has to drive 40 minutes into Massachusetts to drop the girls off at his grandparents' house then 30 minutes into Providence go to his appointment drive 30 minutes to the girls then 40 minutes back to our house - it's not ideal.  We've been making it work because we don't have a choice.  Yesterday he had an appointment in Providence and happened to get a letter at his grandparents' house telling him that he had to be at the VA hospital in Boston the following day (today).  He called me at work and asked me to take the day off to go with him.  He can't drive in Boston, it is just not even an option for him in his current state.  (And why did this letter go to an address we had updated months before and why did they have a phone number that had been changed months ago as well...we have been getting letters and calls from the VA in both MA and RI since July??)

We weren't really sure what the appointment was for, he had to check in the the compensation/pension desk so we thought it had to do with his TDLR (he's only on temporary disability for some stupid reason but in 4 years it will be permanent).  What this really was was singing for his supper.  He had to go prove that he is still messed up.  And apparently they can call him in to do that at any point - for the rest of his life.

His first appointment was a psychologist who went over every reason he's messed up and how him being messed up totally makes his life suck.  It was a lot of fun, really everyone should do that at least once a week.  At the end of the hour she said her report would state that his depression was sever but his PTSD seems like it's getting better...So now we are left to sit and wait for the next 4 months to see of they are going to mess around with his PTSD rating.

Appointment number two was neurology where an emotionally drained and humiliated Will had to again sing for his supper and prove to another doctor he has never seen and will never seen again that his does, in fact, have a TBI and it makes his life a living hell.  You can imagine Will was in a horrible mood at this point and was doing his best to give this doctor the benefit of the doubt but he seemed to take everything personally.  He even told Will that he should chill out because this office was pretty chill.  Will almost lost his mind so I stepped and and reminded the doctor that is was very easy for him to say sitting in the examiner's chair and that he needs to take what Will is going through into account.  A lot more happened in that appointment, I was kicked out while he performed the most basic neurological tests.  During this time Will was telling him that it is beyond messed up that He's been home for 9 months and the first neurologist he was seeing wasn't to treat but to evaluate him.  The doctor's response: "If you don't like something take it up with the VA."  Totally dismissive, cold and horrible.  Will reminded him that as a doctor with education and clout it may mean more to the VA coming from him and not some messed up soldier.

We will be taking this up with the VA, Will is going to go out of his way to be sure that everyone knows just how horrible this man was to him - telling someone with a TBI and PTSD to chill....as well as so many other issues. 

Tonight we are drained and emotional.  We feel like Will is being treated like an unwanted stepchild.  But at least TC told me that I'm a bad mom so that was a nice cherry on my shit sundae. 

Working Mom Struggles

I never thought it would be easy, not once.  I always knew and appreciated the time I was able to spend home with my babies - even when it meant that we were searching the couches for spare change!  We had our ups and downs these past four years since becoming parents and since Will's injury.  But Will can't go back to work - not in the state he's in now so we knew it was my turn to step up.  Yes, I have been working since February but that job was mostly at night and I got to spend the best part of my day with my family - but that was the only good thing about that job.

These days I out of bed at 5:30-6:00 depending on if I am going to run.  My girls should not be out of their room until their clock light lights up at 6:30 but that almost never works.  So I am showering and getting ready while changing a diaper, fixing breakfast, and dealing with whatever toddler crisis comes up.  Will is usually still in bed.  If he's not downstairs by 7 I wake him up and try to remember to east some breakfast and brush my teeth before heading out the door no later than 7:21.

I spend the day at work trying to stay busy - which is not always easy - and fighting the physical pains of missing my children.  Some days are better than others but at least once a day my abdomen feels like I am being stabbed and the desire to put my arms around them is overwhelming.  I want to know what they are doing, if they know that I love them...pathetic, I know.  I do my best to take control of these feelings but some days the anxiety takes over and I have to deal with a mini panic attack prying that no one notices.

I call home on my lunch break, checking on everyone.  I make sure Will is feeling well enough and the girls are behaving.  At 5:00 on the dot I am out the door and speeding down the road to beat the commuter rail traffic to get home by 5:30.  When I get home Will is stressing over dinner and the kids are running around in their disaster of a playroom.

The house is a mess, we eat dinner as the girls start to wind down and become unraveled.  Bedtime is at 7 but the tantrum start well before.  I am home for their worst part of the day.  We put them to bed and it takes over an hour of screaming and crying and potty trips and whatever else they can thinks of before they are finally asleep.  Now I try to clean up, without Will seeing me clean because he feels bad that while he has all these grand plans to keep the place clean nothing gets done.  I try to not hold it against him, because of his injury he has a tunnel vision issue where if he's doing one thing nothing else in the world exists.  I would rather have toilet bowl ring than a toddler who wonders out of the house alone.  But damn it sucks.  Somehow he does find a way to clean his fish tanks twice a week though...  His social anxiety wont allow for us to hire a cleaning lady.  Then I finally get to try to relax and Will is all over me about why I'm so anxious.  But what can I do?  I know his limitations - complaining to him about things he wishes he could fix is just going to leave us both miserable.

I really hope starts to get better, I don't know what will change but hopefully something.  But I can't really think about that now, I have to meal plan for the week and get my shopping list together because guess what - I still have to do that too.

Date? That's a Fruit Right?

I am getting more and more frustrated with our lack of dates.  We still haven't had one since 2010...February 2010.  We now live close to family and have a cousin of Will's 1.5 miles away willing to sit but still nothing.  Today he made me choose between going to the zoo with the girls are going out with him tonight because he didn't think he would be able to handle both.

I've never seen Sophie's Choice but I imagine it had something to do with a similar decision. 

Here is a picture of me and the girls at the zoo.

I am beyond frustrated.  8 months ago we were on the verge of a split, it is way overdue that we put us first.  The best part of all of this is talking about it without making it seem like I am attacking him or downplaying his anxiety but the fact is that I have it too.  My triggers are different but they are still very real and feeling like I am worth at least attempting a night out would do a lot to help me. 

I want to get pretty and go somewhere with just my husband and, for one night, be a normal couple.

My First Race Was a Great One - Run to Home Base

6AM train selfie

Yesterday I got myself out of bed before 5AM, laced up my sneakers, drove 45 minutes to the train where my sister was waiting (after her early wake up and 60 minute drive) rode the Green Line into Fenway for 30 minutes and then ran a 5.66 mile race.

Last year at this time I couldn't even run one mile.

When I moved home one of the things I was the most excited about was being able to participate in the Run To Home Base it has everything I am passionate about, TBI/PTSD research, running, and the Red Sox.  I was very intimidated by the commitment to raise $750 but I decided to take the leap and signed up.  I ended the day yesterday totaling $2005!  If you want to donate you still can here.  The money raised goes to the Home Base Program which does great things for those with TBI/PTSD and their families.  I actually going to call this week to see about getting some help for myself since it seems impossible to get Will to agree to go.

During the open ceremony I was thumbing through facebook and twitter and saw that Will had shared an article about the race that featured me.  The night before he said he didn't need to read it because he wasn't going to learn anything new.  That really broke my heart (and my spirit) so just seeing that he not only read it but shared it on facebook and twitter made me ugly cry and really pumped me up for the run.  He seemed to be sharing a lot of stuff about the race and the day - maybe next year he will come.

As for the actual running part, well I didn't train.  I have sucked about running, I come up with every possible excuse.  Work really was an issue but also leaving the house to run after/before working all day seemed unfair to Will.  When I did get out there it seemed so daunting, I was psych myself out thinking about the 5+ miles that I would run 1.5 and have to walk.  I was stressed.  I got out there on Saturday with a goal of 60 minutes, had I been paying attention to my total time I could have done it easily but I wasn't so I missed it by .02 seconds!  Oh well, next year.

My sister covering up Will's phone number, so if I ever get run over while running they can call him.

I mentioned before that Will wouldn't be coming with me so my sister was kind enough to join me so I wouldn't be all alone.  While I was running she helped pack care packages to send overseas and learned more about the home base program, even though she has told me several times before that she has no interest in being a runner she is VERY excited about running with me next year!

Post run selfie

This was, for me, the perfect first real race.  Now for the rest of the photos.

A few World Series trophies - This one's for you Dad!

Some dude getting a little too close than necessary at the start - I had no idea this even happened until I saw the pictures.

Just standing where the greats have stood, NBD.

House Arrest

I've talked about it in the past but one of the hardest parts of Will's post TBI life is the social anxiety.  Don't get me wrong, before he was injured he would have rather sat at home than go anywhere but he could go.  Now just the thought of having to interact with other people makes him physically ill.  So we are home, always home.

I know I can go out on my own but I can't really make plans because my job is pretty last minute most weeks and because I never know what kind of a day Will will be having.  When I do find myself having a free night or some time he always says "go out, do something for yourself" or "call your friends, go out".  It doesn't quite work like that.  I've pretty much neglected most of my friends since I got home - I haven't done it because I don't care or I don't want to see them, I miss them terribly, it just happened.  When I am not working and the girls are awake Will gives me a guilt trip if I am not home with them and I work most nights.  Almost all my friends have kids, just because I have a free night it doesn't mean everyone else (you know, people I've failed to fit in my calendar up until now) will drop everything.

This would all be solved with one thing, I know what you're thinking - PLAN AHEAD!  Yup, that seems to solve a lot of problems, all but one.  My husband.  He acts like a lost puppy when I make plans without him.  He doesn't mean it but he does it.  First, I am always sure to invite him along - that would be ideal but he never wants to come.  So I have a choice, go without him and feel like shit or just stay home.  To avoid this I've stopped making plans, stopped committing to things.  It sucks, when I am not on work release I feel like I am on house arrest.  I don't really know a way around this.

As hard as it is for me the people who are really losing out are the girls.  I am trying to just take them and do our thing as much as possible but that has it's downfall too.  I took the the girls to the beach and they had a blast in the sand and even ventured into the ocean.  Will was pretty bummed to miss that.  A week later I took them to swim in my sister's pool which the both loved and had a blast, I don't think he's even looked at the pictures.  My going it without him seems to make him worse.

This should be daddy, not Uncle Brian.

 I am really struggling with this.  I have never thought I would be living like this.  I don't want to live like this.

I Had No Idea How Hard This Would Be

By the time Will actually retired he had been injured for almost 4 years.  I thought I had a pretty good idea of how life would be.  We had good times, we had times so dark that I couldn't see the end of my nose but we seemed to deal with it fairly well.  That was 3,000 miles away from our reality.

Moving home has really highlighted Will's limitations.  Gone are the days that the four of us could hide away in our home sheltered from the world.  Now we have family obligations, work obligations, restless children and countless other things that need our attention on the other side of our front door.  The exposed side, where everyone can see you, where you can see everyone seeing you.  It's scary out there.

We have tried to be "normal" as much as possible, when that hasn't worked we tried to be our normal but the sad fact is that's not really working either.  I've mentioned it a few times on twitter, Will has had to pull out of plans that we've made.  I am running a charity run with The Red Sox Foundation to help raise money and awareness for TBI/PTSD called the Run To Home Base (please donate here is you can!) I was so excited and proud that he and the girls would be there to watch me cross home plate at Fenway Park at the end of the race but he wont be there.  The anxiety of being alone with the girls in public is just too much.  The thought of people looking at him and feeling sorry for him because of his injuries was just too much.  I understand this, I know he would be there if he could but he just can't.  It hurts my pride that he wont be there but it kills my heart that he can't be.  Being there or not is not a gauge on how much he loves me or how our marriage is.

In March we bought tickets to four Red Sox games, I was pretty excited since we used to go to the games all the time in Washington.  It was after a Sox game here in Boston in 2005 that he first told me that he loved me.  We went to our first game last month and it was nothing short of a disaster.  We had to drive into the city and pay $60 to park - in the past we would have take the train in but you can't put a guy with PTSD on the Green Line after a Sox game.

It was freezing that day and he is unable to regulate his body temp since his injury (we didn't know how bad this issue was until we got home - it was never an issue in the Arizona heat) and he was freezing for the 3 days following the game.  He was too anxious to enjoy the game, he couldn't even talk to me.  Now I am going to be taking friends to the remaining games.

He went to the pet store by himself, he was procrastinating leaving the house so I asked him what the problem was, he told me he was afraid to go alone.  The thought of having to talk to people paralyzed him with fear.  He was afraid to go buy fish, the man who ran into a bunker with a detonated explosive to retrieve the body of a working dog because you don't leave a fallen Ranger was afraid to talk to a 17 year old girl about buying fish.  Let that sink in for a minute.

Life is certainly different since retiring.  I knew it would be hard, I even knew it would be harder but I didn't know it would be this much harder.  I am scared that I am getting lost in it all.  Other than my job it's all about him - everything.  I miss me.