TRUST - My Biggest Disability

So you know that I got an AWD spot through Achilles International - my absolute favorite foundation that helps disabled people participate in mainstream athletics. Achilles gave me a spot with the Freedom Team of Wounded Veterans when I did the San Diego Rock n Roll marathon last year. Even though I am not a veteran, everyone on the team welcomed me with open arms and that was my first ever experience with Achilles.

So I was given a spot on Team Achilles for the 2015 TCS NYC Marathon. Most people who don't know me and my story will often look at me and say "what disability." I got it from Ironman when I went to pick up my race packet for the 2013 Ironman 70.3 in Augusta, GA. When I went up to pick up my race packet at the expo, the Ironman representative sitting behind the table couldn't seem to find it among my age group of women racers. I told him he was looking in the wrong spot, that I was a PC Athlete (physically challenged). He looked me up and down and snidely said, "you don't look physically challenged to me." I took it as a compliment rather than a question.  I smiled, took the bag he found that contained my race information turned around and walked away. 

So back to NYC and why I AM considered a disabled athlete or as I prefer to call it a “special-abled." I suffered a severe Traumatic Brain Injury (TBI) back in 1997. Brain injuries are invisible, which is part of the frustration those of us who have them feel because sighted people can only understand what they can see to be true. What people can’t see requires faith and faith comes in time, usually after some sort of an education on what it is they cannot actually see.  The bible teaches us to live by faith and not by sight. 2 Corinthians 4:18 says, "So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."  But because we often live in a very impatient world, people will only believe what they see. 

So, if you read up on TBI, you will see that with it often comes a lot of issues involving both the central and peripheral nervous systems. Our brains control everything, they are really who we are. Our bodies are just a shell.

In addition to the brain damage I sustained, I also acquired a lot of physical injuries. My shell broke in many, many pieces, but, the good news was that they were able to find all the broken pieces and glue me back together again.

I also damaged a lot of nerves. Most people can only recognize the damage that occurred to my facial nerves leaving me with facial paralysis but, I sustained some pretty bad nerve damage to the entire right side of my body. I have what is called chronic paresthesia – you can look up what exactly that is online, but in a nutshell, it is that feeling you get in your extremities when they “fall asleep.” That pin and needles, prickly sensation. If its your foot or hand you almost lose all sensation in it except for that prickly sensation. It feels completely numb and heavy – like dead weight. It's hard and often impossible to walk on a foot that has fallen asleep.  The same is true for a hand that has fallen asleep, grasping a hold of something in your hand with control is nearly impossible.

I have that feeling on the right side of my body all the time. My right foot and right hand have been sound asleep for over 18 years. That is why I had to relearn how to walk again. That is why I basically had to and still have to at times, relearn how to do almost everything that involves my extremities because I am right side dominant. 

 It's weird because my muscles are getting bigger from working out, but they have practically no strength.  I played competitive volleyball in high school and college. I had a wicked fast overhand serve. Now, I’m lucky if I can hit the ball 10 feet when I serve.  It’s super frustrating because I can’t do a push up or a pullup – not correctly anyway – I have to cheat, I mean really cheat.

Things like opening jars can be tough, turning keys to open doors, holding a pen and writing or typing takes twice as much energy as before, so my hand just gets tired quickly. I frequently knock things over with my hand because of a lack of control.  I am told that my peripheral vision has something to do with that as well - another issue caused my damage to my brain.

In regards to my foot – I had to relearn how to walk and that became more of a trust issue. Because I cannot feel the ground too well, I have to trust that my brain is sending the correct signals to my foot which is to support my body as it moves forward.

I had to relearn how to run again when I decided I wanted to try to complete a half marathon.  Since I never even gave running a second thought, I didn’t even try it for over 12 years post trauma. There is also a big difference between trusting your foot to be there when you walk vs when you run.  Since you are traveling at a faster speed when you run, you mentally require more assurance that you will be safe. In order to get that extra assurance I often slam my right foot down really hard on the pavement so that I can feel it more and be more confident that it is really there.  That has led to stress fractures and a condition called Osteochondritis dissecans in my right talus. In order to prevent more injuries, I have to have more trust. So far two surgeries within 3 years have proved how much trust I really have.

Jumping as my trainer, Jake, can tell you is kind of comical with me. I can’t feel the force of my foot, leaving the ground so there is zero trust there. Box jumps are just not my thing. And it's not really a hop that I do – it’s a cross between a hop and jump – we’ll just call it a jop.

Then there was learning how to ride a bicycle with a sleeping foot and that just happened 3 years ago. Add to that fact that I can’t feel myself turning the pedal with my foot, with not really feeling that my hand is holding on to the handle bars securely and that my equilibrium is way off because of the damage to my inner ear, which led to hearing loss a plus my balance is off because of the brain damage and diplopia and you now can understand why I am deathly afraid of riding my bike (but I did it – 56 miles twice!)

So my ENTIRE life now revolves around TRUST. 

Physically, I have to trust my brain that it is sending the proper signals to my organs and other body parts. Then, I have to trust that my body parts have received those signals and know what they are now supposed to do and that they will have the strength and coordination it takes to do it.

Mentally, I need to have enough trust in myself that I am making the correct decisions, even though I now live with a mind that has no control over impulsivity which often leads to recklessness.

I have to trust my friends that they will always have my back, be there when I need them as well as catch me if I fall.

I even need to trust perfect strangers to some extent that they are not going to harm me even after I have been harmed before.

It all comes down to that one word, TRUST. Something that I have so little.

I do put a lot of trust in my body and for the most part it has been very good to me so I treat it well, keep it healthy and try to take the very best care of it that I can.

My family says I am introverted because I rarely like to leave my home – especially for social occasions. I do have a lot of Facebook friends because they are safe for the most part.  I am able to keep my distance from those friends I do not regularly see and therefore I do not develop very strong emotional ties to them. You may be one of them if you are reading this. If I tell you I love you, I really do mean it, but I probably don’t trust you. 

I have given out bits and pieces of what little trust I have left to certain people who have earned it, but there have been those who have taken advantage of and lost it.

Don’t take it personally, if I don't present you with my trust on a silver platter, it's just something that I am really not capable of doing right now. But if there ever comes a time where I am able to give you even just a tiny little bit you better hold onto it as tight as possible because if you lose it, I really have no more to give to you.

The definition of the word disability is “the consequence of an impairment that may be physical, cognitive, mental, sensory, emotional, developmental, or some combination of these. I have a lot of physical challenges and special-abilities in my life, but when it comes to what my disability is, you can sum it up with one word – Trust.

Christianity - Are We Missing The Point?

I've been wanting to write this post for some time, but I have been struggling with how to write it without starting another war.  The reality of it is, when it comes to certain topics you are bound to piss someone off.  I put religion right up there on the same level playing field as the issue of gun control and politics.

Religion is a personal belief, however most people are born into a religion.  Whatever your parents' beliefs are usually become what your belief is because that is the religious practices that you are raised with.

I was born into Judiasim.  Just like there are several different types of Christianity (Catholicism,  Protestantism, Methodist, Baptist, Evangelical, etc.), there are different types, or denominations of Judaism (Orthodox, Conservative, Reform, and Reconstructionist).

Our family belonged to a Reform synagogue.  The Jewish Outreach Institute describes Reform Judiasm (also known as Liberal or Progressive Judaism) as "subjects religious law and customs to human judgment, attempting to differentiate between the facets of the Torah that are divine mandate and those that are specific to the time in which they were written."

Religion, however, wasn't really something that I believed in.  It wasn't important to me. I had always seen religion as just another way to separate people.  Them and us.  I desperately wanted to believe there was a God though.  I needed to believe there was someone up there that could perform miracles and who could defeat evil.  Kind of a worldly superhero!  So when I needed help, I prayed to God and for those times of need, I believed.

When I was growing up, 99% of all religious leaders (Rabbi's, Priest's, Minister's, Pastor's, etc.) were men who had their AARP cards and the thought of going to a temple or church and listening to a bunch of old guys telling what was right and what was wrong didn't appeal to me.  Religion was just another form of control and I wanted to be free.  I was a rebel, I wanted nothing to do with it!  I belonged to the church of Amy.

As I continued to get older, religion became irrelevant in my life.  I didn't practice any sort of organized religion, I didn't relate to any particular kind of religion and now that I think about it, I was more on the side of Bill Maher when it came to religion.  I didn't believe there was an actual God.  I didn't believe that God gave Moses the 10 Commandments or that Jesus was the son of God.  To me, religion was Santa Claus, the Easter Bunny and Hanukkah Charlie (my dad's answer to who brings us Jewish kids presents on Hanukkah).  I just wanted to enjoy the festivities and the spirit, but I didn't care to learn their true meaning.

How and why I eventually became Christian is actually a whole chapter in my book so I don't want to go into it in detail here, it is too lengthy.  Let's just say one day I finally found God and realized He had been by my side the entire time.

So I started to read the Bible - the New Testament.  I studied the Torah in Hebrew School (part of the Old Testament) and so I was curious about Jesus.  I wanted to learn who Jesus really was.  I wanted to read what he did, how he did it, to whom did he do it too.  I was like an FBI profiler and my subject was Jesus.

What I learned by studying Jesus is what made me a Christian.  I became a disciple of Jesus because I believe in HIS message or what I believe his message to be.  I believe God sent Jesus down to earth to deliver His message.  So you can call it God's message or Jesus' message, to me they are one in the same.

Jesus's message, TO ME, is one of  mercy, grace & compassion for ALL things!  The ALL is the key word.  Jesus showed mercy, grace and compassion to EVERYONE.  Not just his friends, but to his enemies.  Not just his disciples, but to those who did not follow him.  Jesus did not discriminate when it came to showing mercy, grace and compassion.

So here is where I make a shocking statement.  I have a hard time with the Bible.  I do not believe a lot of what is written in the Bible is what Jesus had in mind when he developed Christianity.  Like I said above, Jesus' message was about mercy, grace & compassion for all people.  It wasn't about believing in a set of rules, creeds and dogma that were intended to propagate hatred.

The Bible was written by over 40 different authors from all walks of life: shepherds, farmers, tent-makers, physicians, fishermen, priests, philosophers and kings.  It was not written by Jesus.  The bible is a biography it is not an autobiography.  I am still in the process of reading the Bible and I believe it is a great history book, but I'm not so sure it is the word of God because I think some of what is written in the Bible goes against Jesus' message.  There, I said it!

If you noticed I put the word "some" above in bold because there are versus in the Bible that profess Jesus' message.  Some of the most beautiful and loving phrases in the world are from the Bible and those I do believe are the word of God.  But the Bible was written nearly 3500 years ago and I am sure when it was being written people didn't think we would be living the way we live today.

While I think it's important to study the Bible as a Christian, I agree with Progressive Christian, Edgar Zelle when he said "the historic Creeds of the past should not limit the working of God’s spirit in our own time."  But doesn't that sound very similar to how the Jewish Outreach Institute describes as Reform Judiasm, "subjects religious law and customs to human judgment, attempting to differentiate between the facets of the Torah that are divine mandate and those that are specific to the time in which they were written."  Oy vey - now I'm really confused!!

A dictionary definition of a Christian as a noun is “a person who believes in Jesus Christ.”  Do I believe in Jesus Christ?  Yes.  Is Jesus the son of God.  Yes.  Is Jesus my savior?  Yes.  Did Jesus die on the cross for me?  Yes.  Do I believe he was resurected?  Yes. My answer to all four of those questions is YES.

The word “Christian” as an adjective literally means, “belonging to the party of Christ” or a “follower of Christ.”  Am I a follower of Christ?  YES.

So, according to those two definitions, I am a Christian.  However, according to some people, going to church, serving those less fortunate than you, or being a good person does not make you a Christian.  I can agree with that to some degree. Going to church does not make you a Christian any more than going to a rodeo makes you a Cowboy. But if you profess your faith in Jesus Christ, serve the less fortunate and you are a good person, I believe you are a Christian.

That brings us back to the Bible issue.  According to 1 John 2:4, 10 - The mark of a true Christian is love for others and obedience to God’s Word.  And there is where I deviate.  God's Word in the Bible is not 100% God's Word to me.  I do not think there is a single person on this earth that lives by God's Word according to what is written in the Bible.  I mean every single word of every single sentence.  So what makes them any more Christian than I am?  Who get's to choose which of God's Word's you have to strictly obey and which you can be a little bit lenient on?  Your Pastor?

An estimated 3,500 individuals leave the Christian church each and every day. A 2014 study indicated that over 1.2 million people will leave the church in the next year.  In 2015, it is estimated that over 10,000 churches will close their doors.  80% of Millennials (14-33 year olds) reported that church was 'not important' to them.  I am not a Millennial, but I get why they feel the way they do because I have felt that way practically my entire life about all religion.

I'm not going to argue what is truth and what is false.  I am not going to tell you right from wrong.  But, if Christianity is going to survive, then things have got to change and I believe the first thing that needs to change is the Bible.

God has allowed us to modernize.  He has allowed us to grow.  He has given our brains the capability to understand so much more than those who have walked the earth before us.  I simply cannot believe that He would permit such change if He wanted us to adhere to rules that were written so long ago.  But then that also brings up the question, are those rules really the words of God and the message He wanted Jesus to give to us?

I can't answer those questions.  So I pray to God.  I pray to God everyday and I ask Him to show me what He wants me to do, what He wants me to believe, and how He wants me to live.  And you know what?  He gives me the same answer time and time again.  Have mercy, grace and compassion for ALL walks of life.

I call that being a Christian.

Peace be with you!
Amy

He has my back!

"Don't take it personally; it's their issue, not yours."  "Feel sorry for them because they are just really miserable people."  "Just ignore the haters." "Toughen-up!" That is what I'm told time and time again.

A lot of great advice that I often give to others too yet, I have a really hard time listening to it when I am the one who is personally getting attacked.

I have been warned that by going public with my life that I am opening it up to a lot of negative people who will doubt my sincerity, my purpose, my goal and just do or say whatever they can to hurt me. 

Being born and raised in New York, I have always felt tough enough, that I could handle whatever anyone threw at me.  I mean, look at all I have been through already.  I'm still standing, still fighting, still winning.

Yet today, when I was personally attacked online, by a stranger accusing me of being a "fraud," and trying to discredit my purpose for writing a book and trying to help other TBI sufferers I just had it.  Why am I doing this I asked myself?  Why should I bother?  I don't have to do this.  I don't need to do this. 

Contrary to what most people believe, this isn't going to make me wealthy.  It is the reason why I am trying to crowdfund to raise money to write and publish a book in the first place, so that I don’t have to cause serious financial hardship for my family, especially since I have a disabled son that I will need to financially support for the rest of his life. 

I have met several people who wrote memoirs of their inspirational stories of overcoming adversity.  People who have since dedicated their lives to helping others and they all still need a day job to pay the bills.  Not to mention I want to insure that every service member returning from deployment with a TBI can get a free copy.  I don’t know if my story will be able to help them, I believe it will but my book is not a self-help book.  I do not tell people what they need to do in order to become happy.  I just let them into my world, my struggles, my addictions, my vices and hope that they will see that they are not alone in the world.  That even a housewife with a picture perfect family, who lives in the burbs battles the demon that is a traumatic brain injury.  I do not make any claims that I will change anyone’s life, that just by reading my book and doing what I do will heal them.  Any doctor, therapist, counselor or addiction specialist who is credible will tell them that the only person who can heal them is themselves. 

So why bother?  Why deal with these miserable people if they are just going to bring me down?  So I decided to quit this morning.  I decided I had enough.  That I was making a huge mistake and I was going to scrap the whole book project and just go back to my private life.  I can still help by volunteering at the VA and fundraising for organizations by running and doing triathlons.  This way, I will never have to deal with such nasty people ever again!  I had made my decision and I was going to tell my family, friends and supporters this afternoon after church.

Thursday morning I attend a women's ministry at my church called Mom's Council.  I am in my second year of Mom's Council and I absolutely love it.  I have met some of the greatest women I have ever met in my life there.  I always leave our Thursday meetings feeling complete, happy and one step closer to God than I was the day before.  I am new to Christianity so all of this knowledge about God is like celebrating my birthday and receiving a new gift every single day of my life.

But, I almost didn't make it to Mom's Council this morning.  After I read the nasty comments someone made to me on reddit, I had to drive my youngest son to school.  The entire time I was in the car driving, I was talking myself into just quitting.  When I finally got back home, I was still so upset and frazzled that I hung my keys up on a hook in an entirely different room than where I normally hang them up.  I actually hung them up on a coat hook behind a door, someplace I have never hung my keys up before.  So when it was time to go to Mom's council, I couldn't find my keys. 

I looked everywhere!  In every room in my house, in every dresser drawer, under the couch cushions, in the backyard, in the bathroom, on top of the laundry machine, even in the refrigerator.  I have one of those tile gizmos on my key chain that you can use an app on your cell phone to tell it to make a tune so you can find it.  Kind of like the Find My iPhone app.  But the app wasn’t working.  When I opened it, it just gave me a message that the tile on my key chain was out of range. 

I was really distraught because my friend, Marilyn, was going to be the key speaker at Mom's Council this morning and I really wanted to not only hear what she had to say, but I also wanted to be there to support her because she has been a huge provider of support to me over the past year and a half.

After a good 20 minutes of searching with absolutely no luck, I finally yelled out of frustration, "God, if you really want me to hear what Marilyn has to say then help me find my keys!"  Right after I said that the tile app on my phone started blinking green signaling me that my keys were in range.  So I pressed the find button and I started to hear the little tune.  That beautiful little melody that was God’s way of saying, “here I am.”  I found the keys and off to church I went.

I made it to church on time to hear Marilyn's talk and it was her presentation that changed my mind about quitting. 

Marilyn is a licensed marriage and family therapist who just seems to know what to say at all the right times.  Her advice is and has always been priceless. 

Marilyn's presentation this morning was about forgiveness, setting boundaries and doing what your calling is.  Her first topic was forgiveness and the process of forgiveness.  She touched on how forgiving frees you from the bitterness you harbor and releases you from the hurt that you feel.  How forgiveness is really about your relationship with God.  As she spoke I thought about what had transpired this morning so, I asked God to help me forgive the person who had written hurtful things towards me.

Next Marilyn spoke about boundaries and how to set boundaries to protect yourself from others who try to hurt you.  Again, I thought about what happened this morning and I realized that really the boundaries I needed to set were boundaries for me.  Boundaries that would prevent me from hurting myself by reading and responding to messages like that.  To just walk away from those that try to hurt me, rather than retaliate and try to hurt them back.

Lastly, Marilyn spoke about what God's calling is for you.  It took me 15 years to figure out what my calling was but since then, I have always felt 100% sure that His calling for me was to help others who are struggling with a TBI, especially our wounded service members and veterans.  I realized that everything Marilyn had said that morning was God's way of telling me not to throw in the towel and quit.  

Perhaps He is the one trying to toughen me up, to prepare me for future confrontation.  He is the one that is teaching me how to forgive those that cause me pain and anger and how to protect myself by setting boundaries.  After all, He is the one that helped me find my keys this morning so that I could hear His message and He is the one that confirmed what my purpose is.

I still have an uphill battle ahead of me.  I know the rest of this journey is not going to be easy and I know that I will still run into a lot of hurtful and negative people who will create obstacles and try to prevent me from reaching my goals.  I just have to remember about all that transpired today, to trust God’s calling for me and not to forget that He has my back.

For we are God's handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do."  Ephesians 2:10