The TBI Fire

Writing my book has been one big therapy session.  The more I write, the more I see how TBI and PTSD are affecting my everyday life.  I used to think it was just the memory issues, the clumsiness, the fatigue and of course - the facial paralysis.  But it is so much more.

For example, something just happened this morning that triggered what I like to call a TBI Fire.  Here is what happened....

I sent an email to a friend of mine and in the email, I asked him a question about something that is very important to me and his answer was short and what I perceived was rather flippant.

Now, my mistake number 1, is that I read it during a stressful time of the day.  Early mornings on a school day.  Getting three boys out of bed, fed and to the bus stop on time is hard enough - add to the mix that one is special needs and who fights non-stop with one of his older brothers and you have the perfect storm.

So I read his emailed response and that triggered a small spark which lit a very tiny little fire in my brain.  Very small, even smaller than a campfire, but nonetheless, the flame was lit.

Then I proceed to have my usual 1.5 hours of dealing with three boys, two of whom are fighting with each other in addition to not doing what I have asked them to do (get dressed, eat breakfast, brush your teeth and go catch the bus before you miss it).  Believe me, it may sound easy, but it is not.  I will do another post about the tumultuous school day mornings that occur at my house later and to all the other mom's out there, I promise you, you do not go through the same thing.

So, in regards to my little fire metaphor, it's grown a little and it's now a decent sized campfire.  The stress of my mornings with my boys, well, its kind of like they are fanning the fire to make it bigger.  Like throwing a lot of leaves and sticks and kindling to really make it a big fire.  

Now, if I was able to - I would simply go to my happy place, a place that is peaceful, quiet and where I could escape the fire until it burns itself out, but I can't.  I can't because those three boys are my responsibility and my responsibility is to get them to school on time, which entails getting them out of bed, dressed, fed and to the bus stop.  

Do you see where I am going with this?

So here we had the small campfire that was lit and some boys who are fanning and throwing things at it making it bigger and bigger and bigger and a mom who is in dire need of a firefighter with a fire truck to put the fire out, but all she can find is maybe a garden hose which doesn't have much pressure, at least not enough to do the job.  

For all intents and purposes - this garden hose is the medication I have been taking to help regulate the chemicals in my brain to keep me balanced.

So the garden hose could have put out the small campfire, even if it stayed lit for a while, but, it has zero effect on the fire that is now raging out of control.  And those boys who were making this fire grow - well, they (barely) caught the last bus and got the heck out of dodge and now mom is left here battling what has become a wildfire and because she is not a firefighter, she has absolutely no idea what to do and she ends up catching on fire and exploding because what nobody seems to realize and understand is that this mom had dynamite inside of her.  Yes, 18 years ago, she got caught by some terrorists and they sewed dynamite inside of her.  This dynamite isn't the normal TNT kind, it's a particular one called TBI.  

BOOM!!!  My explosion is a rage filled, out-of-control, response and the fire has spread and more people end-up getting hurt.

That is what living with a TBI is like.  It's that fire and you need to avoid the triggers that spark it because it is hard to put out and people who say, that this is just an anger management problem don't understand that it is so much more.  It is an anger management problem that we didn't have before the TBI and that conventional ways of controlling it don't work for us because our brains are now different.  Your brain is a grape and ours is now a raisin and you can't make a raisin turn back into a grape, no matter what you do.

Now - I am proud to say that my TBI dynamite didn't explode.  The fuse was lit, but I was able to put it out and the only reason why I was able to do this is because I am writing this book and it was as if for a brief second I was able to see into the future so I stopped the bad outcome from happening. I literally had the email reply written and I was able to stop myself from pushing send, that is how close it came.

Not every person who has a TBI is able to do that.  As a matter of fact, most of the time I can't do this either, it is beyond my power.  So therein lies the question, what can be done to stop us TBI fighters from pushing that button?  Medication?  Medication is like one of those nozzles that you can put on the end of the garden hose and has different settings to control how the water comes out.  The one that spins and you can choose shower, jet, angle, soak, mist, center, etc.  Sometimes you find the right setting that can put out that particular fire and sometimes not.

I know what worked for me in the past and that was oxygen.  Ironically, something that is one of the main ingredients of a fire is the one thing that can help me keep it under control.

  When I underwent hyperbaric oxygen therapy (HBOT) I was able to control that campfire and it was easy.  I didn't have to have to mess with all the settings in the nozzle.  I found that one setting that controlled that fire.  But of course the Government that is controlled by the pharmaceutical companies are preventing me from getting the oxygen I need because they make a lot more money by selling those nozzles.

If only the FDA would approve HBOT as a viable way to manage the side effects that come with a TBI, which would allow me to afford it by requiring health insurance companies to cover it, a lot less people would lose everything they had in a fire that could have been prevented in the first place.

  

The 2015 New York City Marathon

I have been invited to participate in the New York City Marathon with Achilles International.  Achilles is an amazing organization that was started in 1983 to bring hope, inspiration and the joys of achievement to people with disabilities through sports.  

I really can do an entire blog post on just how much I appreciate and support Achilles for everything they do not only for me, but for the disabled community and I will but, I would like to use this post to talk about what the NYC Marathon (NYCM) means to me and how I am preparing to accomplish this goal of completing it.

Completing a marathon to me always seemed impossible, even before I suffered a TBI and became permanently injured.  I grew up in Port Washington, NY so really the NYCM was the hardest endurance event in the world as far as I was concerned.  I knew nothing about Ironman Triathlons or Ultramarathons, all I knew was the NYCM.  I could only dream of what it must feel like to cross that finish line and accomplish something so physically taxing.

Even as I sit here, having already completed 4 marathons, I still cannot believe that I will be participating in the 2015 NYCM on November 1st.  NYCM is my Boston.  It doesn't get any higher on the marathon ladder for me.

I don't just want to finish the NYCM, I also want it to be my best marathon performance.  So I figured I would train the hardest for it.  The problem with that, however, is that I haven't done any endurance training since October 2014 - almost an entire year of just sitting on my butt.

In 2014, I completed more endurance events than any other year since I had started racing.  Two full marathons, two half marathons and an Ironman 70.3 triathlon.  I was burnt out of training and participating in events.  Plus I wanted some time off to work on the book.

Since experiencing my TBI over 18 years ago, I have dealt with chronic fatigue.   My brain gets overtired and basically shuts down, forcing me to take at least one nap a day in order to give my brain a break and recharge.  The fatigue, however, has significantly gotten worse over the years and I know it is in part because not only have I gotten older, but I have also increased my responsibility load by having 3 children.  Add to that mix that one of my kids is special needs and you have a situation that would make any non TBI parent exhausted.

But, it has gotten pretty bad and my brain is not functioning well at all.  Not only am I always tired, but I have almost no memory capabilities, I cannot multi-task at all and most days I am struggling just to make it to the end of the day.  So I finally decided to seek some medical help from my neurologist who had suggested over a year ago that I start medication to help me function normally.

It has been a nightmare trying to get the medication I need because of my insurance company and some very unreliable and uncaring medical professionals but again, that is another post all in itself.  So what does all of this have to do with the NYCM.  Well, here I am in the second week of August and I still have not gone on a run since October of 2014.  How can I expect not only to have my best marathon performance, but to even accomplish a 26.2 mile run without proper training.

So last month I rehired my trainer / and strength coach, Jacob (Jake) Nelson, who helped me train for my first Ironman 70.3 triathlon, my first marathon, who helped me get back to running after knee surgery and who basically helped get me get in the best shape of my entire adult life back in 2012-2013.  

Jake is a fitness guru.  I hate using that word, guru, because it is so overused to describe even average people, but I don't know any other word that truly fits.  I have never met anyone so incredibly knowledgeable and competent when it comes to physical fitness, anatomy and strength and endurance training than Jake.  I really cannot say enough good things about him.  He is my fitness God and the only one I know who could help me get ready for the NYCM in such a short time.

So for the past month I have been training with Jake.  I am feeling somewhat better, even though I still have not received the medication that I need.  I am getting stronger, however.  I have not gone out for a run yet, but that is more because of life getting in the way of that, but training with Jake is no walk in the park.  

Jake pushes me until I physically cannot do one more rep of whatever exercise I am doing.  He doesn't call it "until failure" when he wants you to perform an exercise until you physically can no longer do one more rep, he calls it "until ultimate success."  If that means until you puke then so be it.  I am proud to say that so far he has never made me puke but I know that is because he doesn't want me to - not yet at least.  If I ever do train for a full Ironman he will probably incorporate some puke training as well.  

So this is the start of my NYCM training blog posts.  I hope to get some videos of some of my training so you can see the exercises that Jake has me doing.  I am going to plan on going out for a three hour run this Friday after I drop Anthony off at school.  I just have to somehow remember to make sure all refrigerator and freezer doors are properly closed before I go to bed on Thursday night so that life doesn't get in the way of my run again!

The Winning Ticket

For the past 2 weeks Ant has been saying that he wants to go to Safeway and use his money. Whenever I asked what he wanted to buy he would say a "blue one shot." When I asked him what that was he would just smile and laugh.  That is what living with Ant is like. He doesn't know how to describe things.  He has a name or label for things and that is about it.

So I figured a blue one shot was some kind of candy. Whenever we would go into Safeway he would get upset that he forgot to bring his money.  I would say show me what you want and I will buy it for you and he would say "no, I have to use MY money," and he refused to show me what it was that he wanted.

Today I took Ant to a couple of estate sales and I told him to take his money in case he saw something he wanted to buy. On the way home, we stopped at Safeway and he was so excited because he finally had his money with him. Ant danced and skipped around the store waving his $5 in the air.  I kept asking him what he wanted to buy and he just kept repeating a "blue one shot."  When I asked "where is it?"  His reply was "there," but he wouldn't point at anything.  When I asked, "where there?" he would just start to laugh and skip off waving his $5.

We finally got in-line to pay for our groceries and Ant exclaimed "my blue one shot!"  I asked him where and he points to the lottery vending machine at the end of the checkout aisle and sure enough, right there on the machine was a big button all lit up that said "ONE SHOT."

The vending machine was filled with about a 15 different kinds of lottery scratcher tickets, but there was one for $5 and it was blue. Ant put his $5 into the machine and pushed the big one shot button and then pushed the button for the blue scratcher.  The machine spit out a big blue ticket into the receptacle and Ant put his hand in and grabbed the ticket and yelled "I won!" He skipped the entire way to the car waving his blue ticket it in the air.  When we got to the car I asked him what he won and he said "money." 

We have since returned home and Ant has no interest in scratching off the ticket to see if he actually did win.  He thinks that just because the machine gave him the ticket means he won. I asked Ant what he wants to do with his money and he said buy stuffed animals. 

So here I sit at the kitchen table, staring at this scratcher wondering if he knows something that we don't? Is this a winning ticket? Or maybe we are all winners regardless if the ticket is a money winner because just the fact that we even got a ticket means we already won. I guess we will have to wait until Ant wants to scratch it to see if we won any money, however, even if it isn't a money winner I will tell him that he won $20 and take him to CVS so he can buy stuffed animals because I sure won when God gave him to me!

My Special Needs Boy - The Antman

In addition to being a TBI survivor and struggling daily with my mental and physical disabilities, I also have a special needs son who has a cognitive disability referred to as Intellectually Disabled or ID.

It's hard to describe Anthony's disability.  There really is no concrete diagnosis.  He is not on the autism spectrum, he has no chromosomal aberrations, and he did not suffer any head trauma or ingest any toxic substance that would have caused this birth defect.

Anthony has been through a myriad of medical tests, including an MRI, EEG, and a complete DNA markup.  Absolutely every test came back as 100% normal.  He has what they consider to be a non-syndromic intellectual disability and only 1-3% of the population is like this.

Anthony has an extremely low IQ.  Anthony is now 8 years old, however cognitively he is like a 2 year old.  He is potty trained and was able to be at a normal developmental age.  Anthony understands technology.  He can use a computer, iPad, iPhone, Playstation 3, and many other forms of technology.  Anthony can read really well, but he does not understand a lot of the words that he reads.  He can also do simple addition and can count well above 100.  Anthony can also go to the fridge, take out something to drink and pour it in a glass by himself.  Anthony can feed himself, get himself a snack, take a shower by himself (although I still help to make sure he washes properly) and do other simple health care tasks such as that so he is considered to have a moderate ID.

Socially, Anthony is very shy.  It takes him a long time to warm-up to people and be himself.  He knows he is different and it upsets him when other children ask him "what's wrong with you?"  Anthony desperately wants to be seen as a normal 8 year old boy and insists on doing everything other children do, even if it is something he struggles with.

Up until now Anthony has been mainstreamed at school.  The school district and his special education instructors are recommending that he be placed in a special day class for next year's school year.  I am on the fence about that because I know it will upset him to be removed from the school he loves and the kids he knows and loves.  Plus, he has been doing so well at his current school with the services he has been receiving.  It is not that the other school and class will not give him an adequate education, it is mainly that I am afraid removing him from the general population will prohibit his social growth.  The world is not a special day class and Anthony needs to find his place in society in order to survive.

Home life is very challenging with Anthony.  He wants to do everything his 11 year old twin brothers do, but doesn't understand why he cannot.  He has temper tantrums of a 2 year old when he doesn't get what he wants or he gets frustrated.  Luckily, those tantrums are predominantly saved for the home, Anthony has the social understanding to know that kind of behavior is not appropriate for elsewhere, especially at school so there are no behavioral problems at school.

The easiest way for me to describe Anthony is to say he is exactly like Forrest Gump.  He even has a Jenny just like Forrest had in the movie, although her name is Carly and she is just the sweetest girl.  It pains me that he may not be able to go to school with her next year.

So that is my Anthony, who we often call Ant or Antman.  I know God sent him down to me for a reason and I am blessed to have a special child just like him. Everyday has its specific challenges with the Antman but we manage and I can honestly say that his unconditional love is worth every single one of them.

If you are a mother of a special angel, please feel free to reach out to me and share your struggles, your obstacles, your successes, failures, advice, and frustrations.  We special needs mom's need a special place to be open and honest with our feelings and emotions.  This is my place but my door is always open for company.

-A