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.

2015 TCS Marathon - Part One

The days and weeks leading up to the 2015 NYC Marathon were some of the most difficult not only physically, but mentally that I have felt in a long time.  At times I felt as if my life was spinning out of control – well, not really my life per se but my mind.  My emotional roller coaster was on constant repeat and I just wanted to get off the ride.

I guess you can say the ride started last spring when I finally hit rock bottom because of my sleep issues.  After 18+ years suffering from chronic fatigue I was done.  I was done fighting.   I was ready to give up, throw in the towel, wave the white flag, lay down for the count.  I wanted help, I needed help.  Both physically and emotionally and the only thing that was going to provide me with the help I needed was medication.

I really wasn’t very eager to add yet another pill to my pharmaceutical candy jar, but everything I had tried that didn’t involve making the drug companies richer wasn’t working.  I had already spent hundreds of thousands of dollars on every type of therapy you can imagine.  Psychotherapy, hypnotherapy, cognitive therapy, exercise therapy, life management skills therapy, cranial sacral therapy, physical therapy, and massage therapy. 

I tried acupuncture, chiropractic, Egoscue, TheAlexander Technique, yoga, Pilates, meditating and praying.  Eating a 100% plant-based diet helped me to lose weight and get healthy but it didn’t help with the fatigue.  B12 didn’t help.  Vitamin D didn’t help.  Magnesium didn’t help.  Sleeping all day didn’t help.  The only thing that did help was Hyperbaric OxygenTherapy but that was now beyond my financial means since insurance refused to cover it.  

My marriage was suffering, my kids were suffering, my overall health and well-being were suffering.  So I finally turned to my neurologist for help which started well over a yearlong battle with my insurance company to approve medication intervention that would allow me stay awake during the day.

I was forced to take multiple naps per day all the while trying to maintain the active life that helped me manage the Traumatic Brain Injury (TBI) side effects that now plagued me.  Running, strength training, etc.  That magic pill that helped me deal with my depression, mood swings and post traumatic stress disorder.  I tried to force myself to get out of bed each day and do some sort of physical activity, but it was hard and the chronic fatigue was winning.  Still, I registered to do something I have always dreamed of doing, even before my incident, the New York City Marathon. 

Thanks to an organization called Achilles International, I was given an Athlete With Disabilities (AWD) slot to “run” in the TCS NYC Marathon on November 1, 2015.  I was elated.  I was finally going to participate in the biggest event of my life.  Most people consider the Boston Marathon the cream of the crop, but to me, it doesn’t get any better than the NYC Marathon.  NYC is my Boston.  I had finally made it to the top, but the celebration was short lived when I couldn’t even find the energy to lace-up my sneakers let alone hit the pavement with them.

The chronic fatigue that had plagued me for 18 years was now providing my depression with the rocket fuel it needed to take full control of my life.  My excitement about the marathon quickly turned to stress and anxiety which led to daily panic attacks.  The panic attacks made me hide from everyone and everything.  I didn’t want to run or exercise.  I didn’t want to see anyone, including my family members.  I didn’t want to talk with anyone.  I didn’t want to go anywhere.  I was miserable.

In September, after many doctor’s visits, tests, crying, screaming, nervous breakdowns, and self pity parties, I finally got the approval from my insurance company for the medication I needed.  My doctor prescribed me the drug Nuvigil and my chronic fatigue was now a thing of the past, at least temporarily.  It was time to get serious about this marathon – the only problem was that I only had a little over a month to train for it.

Relying on pure determination, I set out to train as best as I could within the short amount of time I had.  I had been working out with my trainer/coach, Jacob “Jake” Nelson, and physically, I felt as if I had the strength I needed to complete it  – it was the endurance capability I was worried about.  Jake is highly educated and extremely knowledgeable when it comes to exercise science, kinesiology, biology and anything and everything to do with anatomy.  He is the only one I  completely trust when it comes to training because he fully understands all of my injuries.  Jake said he had no doubt that I would finish the race and that was all I needed to hear to feel confident.  All I wanted to do was finish without injuring myself any further and before it was time to catch my plane back to the Bay Area the following day.

I trained with Jake a few times a week and did long runs on the other days.  My long runs were proving to be some of the best runs of my life.  I managed to get my heart rate down to 140 bpm while running which provided me with a comfortable pace in which to go long distances. 

Two weeks before the race I was given a last minute opportunity to run the Nike Women’s Half Marathon in San Francisco and I took it. The course was extremely difficult, more hills than in the previous years I had participated in this half marathon and it turned out to be a beautiful sunny and warm day, not the best racing weather in my book. 

The temperature climbed pretty high as soon as the sun rose and the absence of any clouds in the sky made the sun’s heat penetrating.  I could not get my heart rate below 155 bpm and the hills were taking a toll on my legs.  The first five miles were a real struggle and I was getting worried.  I finally gave up on my heart rate and focused on just being able to climb to the top of each hill without the need of an oxygen tank.  It was a tough race, and I was completely spent when I crossed that finish line at 13.1 miles.  In two weeks’ time I had to do double that amount – 26.2 miles – I was in big trouble.

This was a huge blow to my confidence level and the anxiety and panic attacks returned.  On top of this, I started experiencing the most excruciating back pain.  I had no idea where this was coming from as back pain wasn’t something I had experienced in the past.  It was debilitating pain and it prevented me from training at 100%.

Jake and I had to switch the focus of my training.  We had been performing intervals that kept my heart rate high in order to prepare my body to go a long distance at its target of 140 bpm.  Now we had to worry about the back pain I was experiencing.  We eased up on the intensity of the workouts and incorporated more stretching exercises to try to get my back muscles to relax.  Still, I was getting no relief.

The Nuvigil was now in full swing and I had gone two full weeks without having to take any naps during the day.  I was alert, focused and full of energy, but my back was killing me.  In order not to develop a tolerance to this medication, it is advised to do what they call cycling in order to keep your brain guessing as to when the medication will be in your system.  So for instance, take it for 2 weeks, and then take 1 week off.  Then take it for 1 week and take 2 weeks off.  Switching it up like that is what I was told would help keep the medication working at its best.  So I came to the 1 week where I was to stop taking it and low and behold, after 2 days off the medication, my back pain disappeared.

This prompted me to do a little more research on the side effects that other Nuvigil users reported.  

No where on the drug’s official website does it list back pain as a possible side effect so I had to do some digging.   Sure enough, I found a group of people who posted complaints in an online forum of Nuvigil users about severe joint and back pain when taking the drug.  I couldn’t believe this was happening.  I had finally found a treatment to help with my daytime sleepiness and provide me with the necessary energy I needed to be active only to develop back pain so severe that even just walking was a struggle.  I had just opened Pandora’s Box and all my depression, anxiety and panic attacks in my world were now unleashed.

I started to do something I hadn’t done since I crossed the finish line at my first half marathon back in 2010 – I started to doubt my ability to successfully complete the marathon.  

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!