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.