The Burdens We Carry

“Excuse me, but is that a tiny cinder block?”

That’s the question I’m asked pretty much each time I take my wallet out. I almost always take that opportunity to introduce them to Cindy the Cinder Block. I explain about Earl Granville, his twin brother Joe who tragically became part of the 22 a Day statistic for suicide amongst veterans, what Cindy represents, and why I carry it with me wherever I go.

So what does Cindy the Cinder Block represent? 

In order to answer that question I must first give a quick recap on the Granville twins who both joined the PA National Guard. They deployed together several times. The final time Earl deployed he was the sole survivor of an IED that also caused the loss of his left leg. Unfortunately, 2 years later Earl lost something far greater and far more important. Joe, the older of the Granville twins, could no longer fight his demons and took his own life.

Earl worked hard to recover from the physical, emotional, and mental injuries he sustained by the IED while also struggling with the suicide of his twin brother. He began challenging himself by getting in shape again to participate in a variety of obstacle courses and runs such as Spartan races, Tunnels to Towers, and more. It was during one such event that he  found the cinder block that would later play an important role in his life and the lives of so many others. Cindy became a physical representation of the burdens each of us carry and a perfect addition to Earl’s message: “We’re all in this together, it's important to challenge ourselves by staying on the move, and it's important for us to fight the good fight.”

I have never worn a military uniform or put everything on the line to protect our nation and our freedoms. I’ve been told, however, by many wounded warriors that while I’ve never seen the theater of a war zone lugging pounds of gear on my back while carrying a gun under constant threat of danger, I have still been fighting a war for 15+ years and know the feeling of having my life hang in the balance. I’ve been fighting a medical war against the infections that threaten my life with multiple bouts of sepsis. Infections also took  my right leg above the knee in September of 2007 and my right arm below the elbow exactly 11 years and 8 days later. 

Earl was kind enough to send me some Team Oscar Mike gear this past year (a public non-profit foundation formed to support the mission of keeping our veterans On The Move : Oscar Mike in military terminology) including my own Cindy the Cinder Block keychain. I attached it to my wallet so it is always with me and a constant reminder that while I carry some very heavy burdens of my own, I don’t have to carry them alone. When I’m feeling anxiety and the weight of what’s happened bearing down on me, my mini Cindy reminds me to talk openly about my struggles especially with the important people in my life. It reminds me to do what has never come naturally to me... to allow others to help carry my burdens.

When I pull out my wallet and see Cindy I’m also reminded of what Samwise Gamgee says to Frodo in Tolkien’s The Lord of the Rings : The Return of the King, “I can’t carry it for you but I CAN carry you.” I’ve slowly been learning over the years, and now have Cindy as a reminder, to continue working on allowing friends and family to carry me and my burdens when the weight of it all overwhelms me. 

Mass Sootings: the new norm?

A very sad revelation came to me today about the state of this great nation of ours. I was laying around when I heard that unmistakable <<< ping >>> come from my iPad informing me of a new top news story. For whatever reason I chose to open my iPad and much to my horror not only was it news of another nut perpetrating yet another mass shooting but this one hit close to home. I may have been born in NY to very NY parents but we moved to Pittsburgh when I was 5 so to me Pittsburgh represents home and happier carefree days. It’s where I grew up, made mistakes, got into all kinds of trouble, and made lifelong friends. To see the headline of a mass shooting in Pittsburgh - in fact, in an area of the city I know fairly well - was mind boggling and then to realize I’ve been to that synagogue.......

What has happened to us? How have we become a nation of mass shootings? How have we become so accustomed to these horrific events that we post that we’re sending those oh so helpful “thoughts and prayers” and seem to quickly move on waiting to make the same remarks after the next tragedy? I can’t be the only one asking these questions and tired of the fear, the bloodshed, and the lives irrevocably changed forever.

Why don’t we try this new fancy scmancy radical idea of actually respecting each other’s differences instead of hating them? Why don’t we respect, honor, and learn from the diversity that surrounds us in this big melting pot we proudly call home. Why not listen - and I mean REALLY listen - and learn from those around us? Why does it matter so much what a person’s nationality is? Their sexual orientation? The color of their skin? Their religious preference? When it comes down to it you and I and the guy two barstools up down aren’t that different and to paraphrase Louis Armstrong imagine what a wonderful world it would be if we started seeing each other simply as fellow human beings.... what a truly wonderful world.

Most have never heard of Up with People but it is “an educational organization whose mission is to inspire young people to make a difference in the world. UWP works to break down cultural barriers and create global understanding through volunteer service and a musical show.” Since news of the shooting on my old stomping grounds one song from the UWP show I saw many years ago called World in Motion has been stuck in my head:

Il Faut Tout Leur Dire
(in English : We Must Tell Them Everything)

“...through ignorance, stupidity, and hate man slowly destroys himself. We must tell the children to respect their differences with understanding and compassion. No other answer is in sight. Once they know life is precious, they’ll protect it with pride. There’s no barrier they can’t overcome when Peace is the prize”

🔶 Pittsburgh and Squirrel Hill Strong 🔶

Thank You All

It has been awhile since I posted a new blog because with so many intense things happening, writing about it got lost other than updates on Facebook. So allow me to start this blog post by dedicating it. This post is one giant shoutout to all of you who’ve had my back and still have it. Some of you I’ve known from the very beginning of this nightmarish journey. Some of you I’ve met along the way through the years. Some of you are relatively new to my journey and still never hesitate to offer support. Some I personally know while others I only know through electronic social media. Some I don’t really keep track of and others I will admit to periodically stalking. Some I talk to several times a week while others it’s a rare occasion to catch up every two months or so. I guess what I’m saying is that I know a lot of incredible people whether I know them via computers, texts, calls, or in person and I am beyond fortunate and beyond blessed surrounding me.

I’d come to the inevitable conclusion that we couldn’t save my right arm weeks before my surgeon ever brought it to my attention. I just knew the limitations of even the very best of the best surgeons had been reached. I’ve been on a new emotional, physical, strange, and scary rollercoaster ever since. I promise that I do have a great many, “once the pain quiets down I can so do this” moments which I know are the truest moments. I’d be lying, however, if I said I haven’t had a ton of “I’ll never be able to live like this, it’s too damn hard” moments. A very dear friend of mine wounded severely in Afghanistan who has pushed through hell to rejoin his beloved Marine Corps once described me as “a grunt who never got to be a grunt.” I was humbled and honored to be described that way by a wounded warrior at the time and I am humbled and honored every time it crosses my mind. 

You see, one of the ways I’ve gotten lucky is first by having a very black and white perspective of most things. Rarely is there ever any gray area with me whether it’s something as simple as picking furniture or as big and important as decisions about my medical treatments. My oldest sister used to say that I am a YES and NO person. I will at times attempt to be a middle of the road MAYBE person but it never works. She loved telling people about “The Couch” to drive this home to people. I went with her years ago to pick new furniture for her living room. I was brought because other than one other person, I was the tallest person she could think of who might sleep on it. I laid down on the first one and knew it was right but being the dutiful little sister I went to other stores and laid on other couches and was always immediate with any NOs but unconvincing when I’d say MAYBE. We returned to that first store and that first couch and she bought it. It’s still in use today by a friend of mine who decided with her husband to take it after my sister died.

One other way I’ve been lucky is that I’m damn good at improvising, adapting, and overcoming. I’ve always been that way perhaps in part due to being the youngest by many years. My natural setting for surmounting obstacles in my life including pain has always been the same improvise, adapt, and overcome attitude of the United States Marines without ever realizing it until becoming close to many Marines. For those unfamiliar with the Marines or military in general; Marines are taught to be able to overcome any obstacle in their path. The slogan: “Improvise, Adapt, and Overcome” is a mindset. It allows Marines to deal with physical, mental, and emotional strain and situations. This is the mindset I was born with; not one I’ve needed to learn.

The most important way I’ve gotten lucky is that I have you. I have an amazing support system of family, friends, peers,, former teachers as well as an incredible medical team. Some of you are friends I’ve known my whole life while others I’ve only recently met in the past few years. Some of these friendships go back to the days of MySpace. Many of these friendships are rooted in shared medical struggles and others were born of chance either in randomly crossing paths with someone or getting to know them because they are important to people I care about.

I would not still be alive today if it weren’t for all of you. I wish I could make sure every single friend of mine sees this because I know that so many feel helples. Readthis and know you help far more than you know. I could not have survived 70+ surgeries, two amputations, and the death of my eldest sister without those of you who’ve been willing to help me carry my burdens.

What Music Can Do

[This post is dedicated in memory of Corinne Hyre (March 27th 1961 - January 24th 2007) An amazing woman, mother, wife, person, musician, and music teacher.]

I posted a video on Facebook of myself playing the intro music to the TV series The Newsroom. I then received a number of comments on the video itself and via messenger asking how I managed to do it. How did I manage to just sit down with no music in front of me and just pick out the right notes and fit them all together so that in the end, I was able to fluidly play the theme song? The answer may seem impossible for you to think of doing but to me, it's very simple. I play by ear which basically means, if I hear something at least a few times I can usually play it back as I heard it with my own personal twist to it. It doesn't matter if it's a well known song like Billy Joel's "The Piano Man" or a TV theme song.

Take "The Piano Man" for example; if you take the sheet music and attempt to follow along with me as I play you'll quickly notice that I go "off script" pretty fast playing it as I learned to play it - by hearing the song often enough to play what I've heard. I can read music but I have to literally take the sheet music and in painstaking slowness, go note by not writing the letter that corresponds to each one next to it. I can then usually manage to eek out exactly what's on the sheet music but stumbling and fumbling my way through it and instead of it being a fun thing to do, it causes me immense frustration.

The opening music of The Newsroom is beautiful and I'd just watched all 3 seasons for probably the 10th time (if you have Amazon Prime...watch the show and you'll understand why I've watched it so much). I woke up the other morning with the tune in my head. I couldn't shake it from my mind so after breakfast I decided I'd sit at the piano as long as I had to in order to at least figure some of it out. I then recorded it, not to show off or anything, but because it's helpful to me to be able to hear what I played and continue to be able to play it in the future. I posted it to Facebook because, well frankly, I was so excited and pretty damn proud of myself due to my arm.

If you've followed my story you know that I am an above the knee amputee due to recurrent infections and while the infections in what's left of my leg seem to have at least gone dormant for the last few years, unfortunately that hasn't meant that I've been infection free. Due to several bouts of sepsis (what it's called when infection gets into the bloodstream) bacteria was sent throughout my entire body. Apparently, the bacteria decided that my right arm was a great place to take up residence and over a year and a half ago I was diagnosed with osteomyelitis bone infection in my right ulna. It came out of left field and threw all of us including my doctors. It's the exact same bacteria that wreaked havoc on my right leg and we now know that my flawed immune system can't fight this particular bacteria. I've had a number of surgeries on my right arm including losing 80% of my ulna which forced my surgeon to create a one-bone forearm. He literally cut my radius (the second bone in the forearm), moved it inside my arm, and used plates and screws to attach it to what was left of my ulna. The reason we have two bones in our forearms is so we can supinate and pronate our arms making the palm up motion and the palm down motion. I now have an arm that can't do either movement. But I digress...

Growing up, my sisters and I didn't get a choice. We each had to learn to play the piano and one other instrument of our choice. Michaeleh, being the oldest, chose the flute. Amanda chose violin and then swapped to the cello. I, being the youngest and looking up to my eldest sister, also chose the flute. Michaeleh sailed through piano lessons. She was the one who could sit down, open a new book of music, and sight read it with few mistakes if any at all. Amanda struggled through piano lessons in large part due to a personality clash with our piano teacher. She can play but she prefers the cello. I don't think she's sat at the piano in years. She isn't nearly as good as Michaeleh was at sight reading but she can do it if she tries and really wants to. I had the same personality clash Amanda had with our original piano teacher who turned my love of making music into a hatred of it. I got lectured at every lesson about playing what was written and as her frustration with my inability to do so grew, the angrier she'd get. Eventually, like Amanda, I quit.

Several years later, I started taking lessons again with a wonderful woman who taught Michaeleh and I both how to play the flute and also gave piano lessons. I'd been incredibly hesitant to take any music lessons but especially piano lessons. It turns out that I owe that woman far more than I could ever have given her. She recognized that I play by ear and instead of berating me about it being a "bad habit" as my previous teacher had, she made certain that I knew that the ability to do that was an incredible talent that very few people have. She gave me one of the greatest gifts. She gave me back my love of making music which is also meditative and calming for me when my life is spinning out of control. Unfortunately, she was taken far too soon from this world by cancer - just as Michaeleh was 7 years later. I can't begin to tell you how much music has helped me to cope with my sister's death.

Michaeleh was the sight reader. Amanda had some of that ability and far more musical ability that she's ever let on or embraced. Me...I can't sight read at all. I can read music but I literally have to sit down and write the letters next to each and every note and then I can fumble my way through something. I'm far better playing by ear - playing what I hear. I'm also able to pick out simple songs like Twinkle Twinkle Little Star or Mary Had A Little Lamb on just about any instrument.

I didn't know if I'd ever make music again once so much damage had been done to my right arm. I'd pulled out my guitar several months back, tuned it, and discovered that with time and some finagling I'd likely be able to get back to playing it again once my arm has fully healed. The piano, for some reason, seemed like a very daunting task. When you sit at a piano your hands are in the same positions as though you're sitting at a computer keyboard. I can sit at the computer and type with ease just as fast as I always have so you'd think the piano wouldn't be daunting to me at all. The difference between a a computer keyboard and the piano is that at the computer your arms generally don't move a whole lot whereas with the piano your entire arm from fingertips to shoulder are used if you're playing correctly. I can't quickly rotate my forearm to hit various notes in various songs or slide from one octave to another as easily. I knew I'd have to figure out a different approach if I wanted to play again which is exactly what I did in working out the intro music to The Newsroom. Part of playing by ear is muscle memory. I conjure up a vision of where my fingers are on the piano for this song or that song and with muscle memory there are many tunes I can immediately just sit and play. It will take time and patience to learn to play those songs again and new songs since muscle memory can't help me now but I will figure it out.

Music is an amazing thing and has been called the medicine of the mind. It can change your mood, set the tone for your day, comfort you, and calm you. I have PTSD and music is an incredible calming tool for me when anxiety starts to strike or when the demons of PTSD make a full fledged attack. While listening to songs on the radio or on an iPod can help soothe those demons, there is no greater soother for them than sitting down at the piano and actually making music even if I play the same song over and over. I truly believe that music certainly can change people, help people, and even save people and I think that every child should learn to play an instrument. I'm not talking about those stupid recorders many elementary schools give out to children. I'm talking about actual instruments. There is a lot to be gained by being able to play an instrument. Playing an instrument - making music - is proven to increase memory capacity, teaches perseverance along with patience, sharpens your imagination as well as your ability to concentrate, relives stress, and teaches you discipline just to name a few of the benefits.

In closing I shall leave you with several quotes about music that speak volumes...

Music washes away from the soul the dust of everyday life. 

– Berthed Auerbach 

A painter paints pictures on canvas. But musicians paint their pictures on silence. 

– Leopold Stokowski 

Were it not for music, we might in these days say, the Beautiful is dead. 

– Benjamin Disraeli 

Music is the mediator between the spiritual and the sensual life. 

– Ludwig van Beethoven 

I have my own particular sorrows, loves, delights; and you have yours. But sorrow, gladness, yearning, hope, love, belong to all of us, in all times and in all places. Music is the only means whereby we feel these emotions in their universality. 

– H.A. Overstreet 

A Setback is Simply a Setup for a Comeback

"There are certain times that you think, "OK, you have beaten me down to my knees and now the challenge is, I am on my knees and you keep beating me down." And the question is: are you going to keep beating me all the way to the ground or will I find a way to struggle my way back on to my feet?"
--- Professor Randy Pausch (The Last Lecture)

A lot of people know, or at least at one time some years back knew, of Randy Pausch and his famous Last Lecture. Dr. Randy Pausch, was an American professor at Carnegie Mellon University in Pittsburgh PA of computer science, human-computer interaction, and design. He learned in September of 2006 that he had pancreatic cancer and in August of 2007 was given a terminal diagnosis and told that he had between 3 to 6 months of "good health" remaining. On the 18th of September of 2007 he gave one of the most upbeat and widely known and remembered lectures at CMU called, "The Last Lecture: Really Achieving Your Childhood Dreams." It went viral quickly becoming a nearly instant YouTube hit which led to further speaking engagements and led him to co-author the book called The Last Lecture which would become a New a York Times bestseller which is where the above quote is from. Unfortunately, on July 25 of 2008 Dr. Pausch died of complications related to pancreatic cancer.

Why am I quoting him and why did I give a brief rundown of this one man's last years? Here is why: not only do I understand his Last Lecture in a unique way but I happen to have had a chance meeting with this incredible man many years ago. While at the time the encounter didn't mean that much to me, it has taken on a far more profound meaning to me in recent years. Let me explain...

As I previously stated, I had no concept at the time as to just how lucky I was to have crossed paths with this incredible man on the CMU campus one afternoon before he was diagnosed and long before he became a famous professor for his Last Lecture. I wasn't even in college at the time of our meeting. I was on that campus as part of an "accelerated and gifted" art program for high schoolers. I was a sophomore at the time and struggling with a great many personal things and wasn't really all that keen on even being given the opportunity to be a part of that program that took so few students.

I was angry. I knew something was physically wrong with me but couldn't find a doctor who believed me. I'd simply been diagnosed with depression, put on anti-depressants, and sent on my way. What we know now but did not know then was that I was suffering from an undiagnosed disease of the central nervous system: Multiple Sclerosis. It went undiagnosed for so long (it is believed I was between 8 and 10 when it first manifested) because at that time it was considered an adult disease and not one children ever developed. Due to that one very wrong assumption within the medical community and despite the symptoms I was suffering from, it was simply never considered let alone investigated. I'd given up on doctors and begun hiding my symptoms which coincidentally altered my  artistic abilities. For example: I am MS Colorblind. There are certain colors I no longer see at all but I do still see many of them. The catch, however, is that most of the colors I see are muted in one way or another. A perfect example is a story my mother likes to tell about looking at dishcloths with me and my being absolutely adamant that they were very yellow when in fact, they were actually a very light tan. Reds and greens to me are often very muted or completely gray in color (different shades of red  and green appearing as different shades of gray to my eyes). My personal version of the classic color wheel is very very different from the actual one. I often cannot distinguish the difference between dark blue, navy blue, dark brown, and black. This is a big reason why a lot of my artwork is done in black and white and if it is in color I often have to check with others as to whether or not it's any good or if I've over edited color changes. This was a symptom I'd likely had from the beginning without knowing it until the day the neurologist who finally diagnosed me tested my color sight only this time, unlike when you visit your eye doctor and they administer the "what number do you see" test, the answers weren't at the very bottom of the pages. However, I digress...

I was an angry teenager as I said which of all of the adults around me aside from my parents my then English teacher turned friend, Tom Breiding,  can definitely speak to since he pulled my angry ass out of the fire more times than anyone can count that year. He's someone I owe a great deal to for standing up to my anger, recognizing that I was struggling with something, and being willing to take me on and fight for me. One day while at this program on the CMU campus, I got into a heated argument with the professor and we both agreed that I needed to cool off. I grab my things and started wandering around the campus. I eventually sat on a lower step of a random stairway and began to busily sketch in my notebook with the darkest of colors and thick angry lines. I hadn't even noticed that someone had stopped near me until that feeling of being watched finally sank in and I looked up with a jolt. I had no idea who the man watching my angry, thick, dark lines become a sketch was when he asked me if I was OK because I'd been sketching so hard that some of the lines went through to the next page. I'm slightly ashamed to admit that when my mouth opened to respond I released a fit of words, many of which he was in no way deserving to be on the receiving end of, but when I was finished he sat next to me with a look etched across his face which I can't quite describe other than to say that he seemed to understand. He waited a beat before asking if he could look through my sketchbook at some of my far less angry work which is when I learned that he had worked for Disney as an "Imagineer" (after first receiving a rejection letter from them the first time he applied) as well as Electronic Arts (an American video game company). He looked through my sketchbook and told me that I had real talent, could see why I'd been accepted into the "accelerated and gifted" art program, and asked if he could offer some advice. I freely admit that I really wasn't in the mood for any free advice, especially from a guy I didn't know which I'm sure showed on my face, but I nodded and listened anyway.

He explained to me that he could see from some of my artwork and definitely from the angry sketch I'd been in the middle of when he'd approached me, that I was struggling with something. He didn't ask what that something was but continued on to say that life often dishes out far more than we think we can handle and at times it truly IS more than we can handle. He said that when that happens often enough we can feel nothing but the weight of it beating us down. He went on to say first, that we all have choices in what burdens we opt to carry alone. Secondly, we also have choices in what we burdens we allow others help us carry. He also admitted that choosing to allow others to help us carry any of our burdens is an incredibly difficult thing to do for most people and he felt that I was one of those who had a hard time letting others help me in that way. And finally and more personally, he explained that I could basically either throw in the towel or say a big screw you to whatever I was obviously struggling with and all of the difficulties I had and pursue doing whatever I wanted to do. It was my choice and my choice alone. He then put an arm around me to give me one of those awkward sideways hugs, stood, shook my hand while saying "oh by the way, I'm professor Randy Pausch," and wishing me the best as he walked away. I had no idea just how profound a moment that had been at the time but I very much recognize it as such now.

Only a lucky few students, faculty, family, and friends would be lucky enough to have ever known in any way, let alone be in the presence of Professor Randy Pausch, and to learn from him both in life and through his death. I happen to be one of those lucky few all because I lost my cool on a different professor and ended up sitting on those steps. Why am I sharing this story now? What exactly am I trying to say? Honestly, I'm not entirely sure aside from the obvious.

We all have crosses to bear and burdens to shoulder and we all have a say in how we go about carrying and shouldering them. I suppose a part of me feels compelled to share this chance encounter because I'm currently shouldering a great many burdens. He hit the nail squarely on the head when he sized me up as someone who isn't very keen on asking others for or allowing others to help. I've been forced to learn but I'm still not always very good at it. Some of my burdens others can help carry but many of them are mine to shoulder and mine alone. I've been stuck in a medical hell for over 14 years between the MS, four bouts of sepsis (one of which had the entire hospital feeling certain I wouldn't survive it) and the infections that took my leg and are currently ravaging my right arm in an attempt to take it as well. At 33 years of age I know that I'm still young but I feel so much older due to what I've seen, where I've been, and what I've been forced to confront as far as my own mortality goes. Then when I thought things couldn't get worse, life threw the biggest grenade of all at me that I couldn't jump on and allow myself to take the blast to save her as much as I wanted to, with the death of my oldest sister in 2014 to cancer.

Lt. Col (retired) Andrew Lourake - the very first above knee amputee to pilot aircraft within the Department of Defense. He refused to allow his above knee amputation to end his career as a pilot in the Air Force. He mustered the strength and the resolve to fly again and eventually was assigned duties with the 89th Airlift Wing at Andrews Air Force Base where he piloted aircraft carrying such individuals as the Vice President, the First Lady, numerous US Senators and Congressmen, and top military leaders. When I began seriously considering amputating my right leg above the knee I came across Andrew's story which inspired me, proved to me that a full life could still be lived post amputation, and I sought him out on Facebook. I'd made a list of PROs and CONs in regards to the amputation of my leg to bring with me when I met with my orthopedic surgeon and he was on the very long list of PROs. Andrew once told me  "a setback is simply a setup for a comeback." His words and the words of the late Professor Randy Pausch quoted at the start of this post stay with me. I may at times struggle and falter in trusting their words and have more than once thought it was all just smoke being blown up my ass, but both quotes are etched in my brain and in my heart.

Every person who truly knows me knows that I do not sugarcoat things. I'm a very black and white person (and no that's not a pun relating back to my MS colorblindness) and tend to be quite blunt. I suppose the other reason that I am sharing my experience with the late Professor Pausch is due to that very attribute and the fact that people often look at me and hear my story and see me as someone to look up to. I can't begin to count the number of times I've heard or read the words, "When I'm having a bad day or a hard time I think of you and what you've been through and how you still manage to find humor and love life and I realize my problems are so small." I appreciate what people are trying to convey when they say things like that but I'm the first person to say that it's apples and oranges. Yes, my struggles are intense and sometimes life-threatening ones but that does not and will not ever negate the struggles anyone else is facing. I'm also the first to admit that I struggle and I suppose part of why I'm writing this post is because the honest truth is that I'm currently struggling with everything. I am currently experiencing one of those phases where I'm unsure of how much more I have and can give to this seemingly endless fight.

I do my very best to live the words of both incredible men but am the first to admit that as time moves on and punch after punch comes it is harder and harder to stand back up. Quitting isn't in my nature but while I used to bounce back quickly from setbacks eager to make a comeback, regardless of how much I may want to continue to bounce back quickly I simply find myself unable to do so. I will bounce back and I will get back up, make no mistake about that, it simply takes far more effort and time at this point. The birth of my niece has definitely helped to jumpstart my comeback but for those who seem to think that I am invincible, have no fear, am "savage as f*ck," never consider throwing in the towel, and never have hard times all I can say is this:

I am far from invincible. I do have fear; sometimes great amounts of it. I can be "savage as f*ck" but am not capable of always being that way. I have considered throwing in the towel so very many times. I do have very hard times beyond the physical issues. I have some very hard times mentally and emotionally.  I will always do my damndest find a way to struggle my way back on to my feet for as long as my body allows but I am also human and I will falter and I will scramble and I will fall down as I struggle back to my feet.

Professor Randy Pausch (October 23 1960 - July 25 2008)

Lt. Col. (retired) Andrew Lourake

Why I Posted a Thank You Graphic

The other day I posted a graphic to Facebook and to Instagram that I'll post at the bottom of this note that is a combination of two quotes that really sum up how I feel about the people in my life. The first quote deals with friends who become more than friends - they become family. The second quote deals with people showing their true colors and knowing who your true friends are when you're in a crisis and need them the most.

To clarify something, I was not looking for the incredible amount of accolades I received from that post when I posted it. I posted it because I have an incredible support system surrounding me that I don't thank nearly enough for all they do and now and then I like to acknowledge them. A lot of people feel they haven't really done much for me over the years because they live so far away or they can't fix me or they aren't in a financial position to send me get well gifts. I want to put a stop to people feeling that way because you DO help even when you might think that you're not. The well wishes and love and support and yes even all of the prayers I receive (as most know I'm not the most religious of people) do me a tremendous amount of good and I accept all of them with open arms and the knowledge that they are each genuine.

My situation is not an easy one. It's not easy for me. It's not easy for my family. It's not easy for the people in my life that I see and spend time with and it is not easy for those of you too far away to visit. I realize that because when a person is sick or injured it is not simply that person who is dealing with the side effects of all of it. The people around us go through the pain and the worry and the hurt as well watching someone they love and/or care about struggle with nothing much they can do to take away the hellishness. Everyone in my circle is effected by what I've been living through.

I was always somewhat aware of that but became incredibly aware when my oldest sister was diagnosed with glioblastoma (the same brain cancer Ted Kennedy fought and John McCain is currently fighting) and then when she died from it. Until that time, I'd always been the patient. I'd always been the one in the bed hooked up to tubes and stuff and then suddenly out of nowhere the tables turned and I became what Michaeleh had always been to me...the sister of the patient. I learned the hard way and very quickly in her last two months that it's not just about the sick person and that care taking, whether it's being a physical caretaker like my parents doing dressing changes or friends sending gifts and cards and keeping tabs waiting anxiously for the next update, is incredibly taxing and scary.

So with al of my heart I once again say thank you for EVERYTHING each and every one of you have done to help me through the years. Again, I'm not looking for pity or recognition or to put myself on any kind of pedestal. I'm simply saying something I often think but don't say nearly often enough.

THANK YOU

Grief: It Doesn't Get Easier But It Does Get Better

A few days ago one of my best friends, in fact the incredible woman I refer to as "My Sister From Another Mister" because we are so alike, suffered a horrible loss. Her amazing, sweet, funny, always there with a smile, always happy to see you, kinder than kind father Calvin passed away after a battle with cancer. She posted to Facebook sentences that have echoed in my own thoughts since the death of my beloved oldest sister in 2014 - also to cancer. She wrote "I told him then, as long as I have a "job" to do, I can handle things better." She also wrote, "People say it gets easier... but I just don't see that ever happening."

People who know me, who know my battle with PTSD for which one of the triggers is hospitals and the noises and smells there, have often said of my spending an entire week in my sister's hospital room before we brought her home for hospice that they are amazed I held it together so well through that week. Those same people have said that they are so amazed that I held it together so well for the month that she was home before she died. I was the midnight shift because I am the family night owl. She needed medication at midnight until the final week and I'd go out, get her to eat some apple sauce in which was hidden a tiny pill, and then spend at least an hour if not far more sitting next to her hospital bed both of us barely bathed in the light of a small bedside lamp. Those people were amazed that I was so strong and eventually openly wondered how I managed. The answer is simple and the same answer that my dear friend gave... as long as I had a "job" to do, I could handle it. I could handle the hospital because my "job" was to be there to help feed her. My "job" was to be the easiest family representative to interact with when co-workers and friends came to visit as opposed to one or both of our parents.  Everyone who had yet to meet me in person knew of me and somehow that made me the easiest family member to interact with. My "job" was to stay most of the day and often into the late evening to make sure she never felt left alone. When she told me as I prepared to go one night that she was scared, it was my "job" to stay and hold her hand until I was certain she was asleep. Those were my "jobs" for that week at the hospital just as it was my "job" when we brought her home to take charge of the midnight shift. It was my "job" to make sure she got that midnight pill and it was my "job" to stay with her until she fell back to sleep. It was my "job" when friends and coworkers came to visit at the house to again be the family member at the foot of the bed sitting with them so they felt a little more comfortable.

I say that it was my "job" because in a large sense all of those things were jobs, however, more than jobs every single one of those things was my HONOR. She was my oldest sister who'd spent countless hours by my side over the years as I went through one medical hell after another. She stood up for me and protected me so fiercely over the years not just as an individual with disabilities but as HER LITTLE SISTER who happened to have disabilities. I've never seen someone more irate over a place claiming to be disability friendly and accessible only to turn out not to be that friendly or accessible to those with disabilities. I know that my friend also views what she did for her dad throughout his cancer battle was not just her "job" but her HONOR as well.

I also deeply feel and understand what my friend means when she says, "People say it gets easier...but I just don't see that ever happening." People tend to hand out A LOT of platitudes and cliches when they don't know what else to say and that it will get easier is one of the biggest when a death occurs. As I wrote my friend in response to her post, it DOESN'T get easier but it does get better. Time, contrary to popular believe DOES NOT heal all wounds especially not the deepest of them. Time will never heal the wound in my friends heart from losing the man who raised her, loved her, was with her through her darkest moments, and whom she was luckily enough to call her dad just as it will never heal the wound in my heart created by the death of my sister. What time does do, I have learned, is build scar tissue and trust me when I say that it takes a lot of time just as it takes a lot of time for scar tissue to form and hold up after a surgery. Scar tissue is a sign that things have been and are healing but it will never be as strong as what was originally there. I personally don't believe that it gets easier to live with such a huge loss but that it does get better as the scar tissue forms. I'm sure there are those who will say that's a matter of semantics and that for it to get better then it must also get easier but I don't see them as one and the same. 

EASIER, by definition means: achieved without great effort; presenting few difficulties. 
BETTER, by definition means: partially recovered from; less unwell. 

I will ALWAYS miss my sister and feel her loss in my life deeply with each new thing - be it a good thing or a bad thing - that happens in my family's lives just as my Sister From Another Mister will feel the loss of her dad deeply in those same moments. Moving forward and dealing with the good and bad of the future will never "be achieved without great effort" without my sister or in my friend's case, without her father. Moving forward and dealing with the good and bad of the future will, however, be done in a better or "less unwell" manner.

The streets of heaven are too crowded with angels tonight just as they are every night. I don't know if this post makes any sense to anyone besides myself or if it comes off as just a rambling blog post of a young woman who has seen too much pain in her life and can't quite find the right words. Regardless, remember this if you remember nothing else: Time allows for the creation of scar tissue which dampens the pain but it does not ever fully heal because no matter how much time passes, pain will still find a way to seep through the cracks. Accept it. Feel it. Embrace it. It is now a part of who you are.