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.

My Family's Tail Wagging Godsend

I'm very open about the tragedies that have struck the lives of myself and my family. I share openly about my health issues and about the fact that my oldest sister died on November 2, 2014 after being diagnosed with a highly aggressive glioblastoma brain tumor less than two months earlier in September of that same year. I personally am one of the countless people living with Post Traumatic Stress, Disorder and no - I have never served in the military. I am one of the countless civilians with PTSD.

I don't remember exactly when the decision was made to start looking into getting a dog again but suddenly both of my parents were looking into goldendoodles. We've never bought a dog. We've always rescued them but due to my mom's worsening pet dander allergies, we needed a "doodle" and more specifically a F1b. What exactly does that mean? A F1b is created when a golden retriever mates with a poodle creating a normal goldendoodle. To create a F1b, a goldendoodle mates with a poodle making the dog one part golden retriever and two parts poodle. No dog is truly hypoallergenic but a F1b is the closest you'll come. They don't shed and by my mom's own testimony, she can and does cuddle with our dog with no allergy issues. Each goldendoodle is different and our girl is the greatest combination with the personality of a golden retriever and the body of a poodle.

My father found a breeder in Lancaster, PA and he and I made the two hour or so drive from where we live to see, and hopefully bring home, one of the 10 week old puppies. The second that the woman placed our Rosie in my dad's arms, I knew we had found our dog. She was so sweet, so cute, and proved that what the woman had said - that particular little girl loved to give kisses and kept kissing my dad's face and hands. We drove home and that weekend my other sister came over to meet her and to help name her. We must have read through at least ten lists of "names for dogs" as well as lists of basic female names. We first settled on Cady in large part because we love the Netflix show Longmire and Cady is one of the main characters who has plenty of spunk which fit our puppy. My dad took her out and by the time they returned...we'd changed our minds. When they walked back in we announced that this adorable puppy who we'd just decided we would name Cady and who my dad had been calling Cady while outside, was going to be named Rosie which turned out to be perfect due to her disposition.

Amazingly enough, from the very start Rosie has seemed to just know that I'm different. I always used a wheelchair at home and crutches while out having lost my right leg above the knee years before but at the time, unable to use a prosthesis. She was patient when I'd crutch my way up and down the stairs. She simply followed me giving me space unlike our previous dog who thought  that the area where my lower leg had been was created specifically so she could run under me to get up or down faster. I often noticed Rosie watching me with a tilted head almost as if she was examining the situation very closely. She got in the way of the wheelchair once and immediately learned that unless we are playing, that she needed to stay to one side of it. Crutches, even for those of us who would be Olympic champions if crutching ability was a Paralympic sport, can at times be tricky and even the best of us take some rather nasty falls on our own. Add a puppy on a leash full of energy to that and things can get far far trickier. Rosie, however, from the start just knew what she needed to do and I could walk on my crutches, her leash in my hand wrapped around the crutch handle, and not have issues. There was even one time when a rabbit hopped across the driveway directly in front of us which, with her leash in the hands of any other person would have had her taking off at maximum speed dragging the person holding that leash with her, and though she registered it and watched it very closely Rosie knew she was with me and that I am different. She tensed and wanted that rabbit badly but didn't take off after it. She just looked back and up at me and we continued to the car without incident. Rosie is slightly over two years old now and I, thankfully, have been able to start using a prosthesis and still when I'm the one holding the leash she's aware and alters her behaviors.

Rosie has been an amazing source of amusement, distraction, and also a source of calmness during the medical problems I've dealt with since she entered our lives. I've endured a lot in the past 14 years. A "simple" knee surgery led to a severe infection and the first of many emergency life saving surgeries. I stopped counting the number of surgeries on my leg during these past 14 years when I hit the 60th. I've survived sepsis, a severe blood infection,  a number of times and months after getting Rosie I survived the worst case of sepsis I've ever lived through - one that many of the health professionals I know didn't believe I would live through. My fever reached a maximum temperature of 106.2 which in layman's terms boiled my brain causing a few seizures and damage to my brain. It is thought that due to that bout of sepsis the bacteria from my leg traveled throughout my body through my blood and marrow and found a home in my right ulna laying dormant until last year. I have since lost most of my ulna to osteomyelitis bone infection, have had massive surgery to insert hardware to strengthen my radius, and am all too well aware that should the infection return I will likely become a double right sided amputee losing my right arm. It has quite honestly been a living hell but Rosie has been there knowing when I need her most to help with anxiety, depression, and fear.

Eight years ago, I had an arterial hemorrhage from my stump nearly bleeding to death on my own couch at home that required surgery, many blood transfusions, and opened my eyes even more to the fact that my health situation was precarious. I also learned that I'd gotten lucky because had I been asleep when the artery blew, there's no doubt that I would indeed have bled to death. The realization several days ago that this past week has been the eighth anniversary of that event triggered my PTSD and caused me to have to deal with flashbacks, panic attacks, and reliving certain moments of it as though it was happening in the here and now. Rosie has responded by sticking very close to my side and more than once I've awoken from a nightmare with Rosie snuggled closely to my side nearly smothering me with her concern, protection, and love.

To top it all off, and I'm sure it's because I'm already on edge from the PTSD caused by the events of eight years ago, I had a breakdown over the death of my sister. I was asked by my family at the time if I'd be OK with Michaeleh coming home for hospice care knowing she would live her final months and die about 20 feet from my room. I, of course, said yes knowing this is where she would want to be if she were able to voice that to us. I was the family member in charge of the midnight pills because I'm a night owl and I'm often a roamer at night when I can't sleep. I spent every night for almost two months spending the midnight hours with my sister. Due to where her bed was, the minute you opened my bedroom door you could see my frail dying sister which is what I faced every single morning when I opened the door. At night around 10PM or so I would retreat to my room. I'd shut my door until midnight, open it, give her the pills she needed while she could still take them, and spend at least one to two hours with her in the middle of the night. That was my routine every night. It wasn't easy but if I had to choose and do it all over again, I'd choose and do the same things.

It isn't often, but now and then when my anxiety is already high, I'll open my bedroom door with the intent to get a drink from the kitchen or to look out at the darkness thinking about things and stare at that space where my sister spent her final months and where she died and not even realize I'm frozen in the past. That is what happened last night and before I knew it the tears were falling. Rosie had been upstairs fast asleep at the top of the stairs (I know because she was snoring). I hadn't made a sound as I sat there reliving touching but very hard moments when out of nowhere and out of a dead sleep Rosie flew down the stairs to my side covering my hands with kisses. She followed me to the kitchen for a drink and followed me back to my room hopping up onto the bed. She watched my every move closely and once I settled in bed she laid herself on me. Her chin was on my chin, her body was laying down the length of mind, and she stared at me. We stayed that way, my dog and I, until she was sure that I was OK and only then did she climb off of me. She found a comfortable spot at the end of the bed and kept her eyes on me for the next half hour with one paw on my only leg until satisfied that I was doing better. It's not the first time she's done nearly exactly this and I know it won't be the last.

Rosie is not a trained therapy, PTSD, or Emotional Support dog though we are working on training her as a therapy animal. She may not be fully trained or certified, but she is every single one of those things without the training and certification and not just with me. It can be another family member having a hard time or a family friend staying with us struggling with something in their life, she senses it and she reacts to it with love and support. She's been that way from almost the moment we brought her home and she realized that I'm different that most people. I go to therapy for my PTSD which has been hugely helpful but I also greatly credit Rosie for the fact that I'doing better with better control over it. A fact that most people, even those living with PTSD, don't know is that a single PTSD episode can last for up to 72hrs before you're back to your true self again.

I credit my therapist but also greatly credit Rosie for the episodes I do have lasting for less time than they ever did before. I tell people all of the time that she has played a big role in saving my family after Michaeleh's death. My other sister isn't a dog person and yet she loves Rosie and you can see her face light up when Rosie is around and is happy to have her come with us to she and my brother-in-law's house when we all. Rosie has certainly saved me from some seriously dark and scary points during my difficult journey through life. I'm not a very religious person but I am spiritual and I do believe in guardian angels and I wholeheartedly believe that Michaeleh knew that for us to be OK, we needed Rosie and made sure she was the dog who became a member of this family.

As I type this, much calmer than I had been a few hours ago but still coming down from the anxiety attack, Rosie is sleeping peacefully at the end of the bed with a paw on my leg slightly snoring as if to say, "I'm here, Meg. I've got you and I'm not letting go."

Rosie taking care of me. Under the blanket with me when I got home from
the hospital. Resting with me. Laying with her head up near mine. Sleeping
on my stump. Happy to let me fall asleep with my arms wrapped around her
which, on an ordinary day, she's not a huge fan of. Her paw holding my hand.

Chilling in bed completely comfortable with my prosthetic leg knowing it's an important part of me.

My adorable (and spoiled) Rosie girl, being a lazy bum comfortably
sleeping on one of my pillows, playing in the snow, and showing
off why everyone who sees her immediately comments on how cute and how
beautiful she is.

An Open Letter To Those Claiming To Have "Cured" Themselves

We've all found ourselves in disagreements or flat out fights on social media platforms, even those of us who detest such things. We all also know that in arguing the odds of changing the other person's mind are slim to none. However, sometimes a topic arises that you just have to wade into with the tiniest amount of hope that you'll help someone understand why what they're claiming isn't quite true. I have recently found myself in just such a situation.

The idea that one can cure a disease by eating healthy and living a healthy lifestyle has been around forever. I've seen it more times than I can count and while I generally keep my opinion on that to myself I simply can't stand aside anymore and allow people to make these claims. Do I believe that eating healthy and living a healthy lifestyle helps someone with a disease be it Multiple Sclerosis, Parkinson's, ALS, AIDS, cancers, or any of the other numerous diseases attacking people daily? Yes. Notice, however, that I said that it HELPS not that it CURES. To simply throw aside all of our medical advancements and say that they actually do nothing and that it's simply Big Pharma looking to get as much money as possible is, in my opinion, asinine. Is Big Pharma a problem? Yes. Is it the reason people have diseases? No.

I've heard it said that diseases are nothing but a group of symptoms Big Pharma has decided to call a certain name in order to gain vast amounts of money by creating new diseases and then new drugs by which to cure said diseases. I'm not saying that I'm a fan of Big Pharma and that they don't play a role in certain issues but again, it's not the culprit. Yes, diseases are comprised of symptoms. That's how you know which disease you have. It's very simple logic.

When I was about 8 years old, the doctors tried to figure out what was going on with me and although I never tested positive and do not have the antibodies for it now, the decision was that I was suffering from mono at a young age. I wasn't. It was, in fact, the beginning of my journey with Multiple Sclerosis. The problem was that MS was not, at that time, considered a pediatric disease so it was never in the running as a potential possibility. 11 years later I sat in a neurologist's office being told that due to the symptoms I experienced I either had a brain tumor, ALS, or MS. After several studies it was shown that I have MS. I was relieved and grateful to finally have a reason and name for the symptoms I was experiencing all of those years.

In 2014, my oldest sister was diagnosed with the most aggressive almost always fatal form of brain cancer. She had surgery to remove what they could of the tumor. She did not do chemotherapy. She did not do radiation. Neither would have saved her life serving only to make her far more miserable. She was gone in less than 2 months. According to the person I've recently argued with, eating nothing but fruits and vegetables, cures because there's no such thing as disease. I can tell you with absolute certainty that no amount of fruits and veggies would have saved my sister's life. She had a cancer that is almost always deadly. Do the "no such thing as disease" people have an answer when I bring this up? No. They do not. They skip over it or don't respond at all.

I have an immune system defect that keeps my immune system from fighting certain strains of streptococcal bacteria. I've lost my right leg above the knee to it and to date have lost my right ulna to it and may in the long run lose my right arm to it. Again, no amount of fruits and veggies could have saved my leg nor can they save my arm should it come to that. They also cannot save me from sepsis which I've already fought off several times. I am literally missing pieces of my body and pieces of my immune system. Also, the "no such thing of disease" people say if you just relax the body will heal itself without any medical intervention. Not for nothing but my leg isn't going to grow back because I eat nothing but fruits and veggies and exercise daily.

I know far too many people who've battled cancer. Some of them have been taken by it and others are alive and living incredible lives today and each of them treated their cancers with modern medicines. Those who are alive today are alive because of the hellish chemotherapy and radiation treatments they had to endure. Do you think any of them enjoyed it? Hell no but it was the only way they had a chance to save their lives. Children die of cancer. Adults die of cancer. But hey, all they had to do to live and cure themselves was to eat fruits and vegetables. How foolish of them to have not done that and only that.

It really upsets me that people dare claim to have the cure for all diseases. I'm in no way trying to belittle anyone who has improved their health by eating healthy and living healthy lifestyles. I do have a problem with someone who has what is a well documented disease that relapses and remits claiming that they're cured by doing such things. Diseases go into remission and if you're one of the lucky people who has gone into remission no matter what disease you have, I'm incredibly happy for you but to then tell everyone else that they're doing it wrong and they are making themselves sick because they aren't just eating fruits and vegetables and are taking advantage of modern healthcare is just plain wrong. Believe what you choose to believe but don't you dare tell the rest of us that we're sick basically because we want to be sick and are choosing to be sick. Not only is it disgusting and disturbing but it's potentially harmful and could actually potentially be deadly if someone decides they'll take that route to treat a disease believing it will cure them because it "cured" someone else.

Again, I am not trying to belittle people. I'm simply asking that should you be one of those people who claims that they've cured themselves and that diseases aren't real that you stop and think before you spout off about it and that you be wise enough to add the disclaimer to your assertions that your way of doing things may not be effective for everyone.  False hope is a horrible thing especially for those who've just entered the world of disease. Be respectful of those around you and if you do choose to spout this crap make it perfectly clear to those you preach to that you are NOT a medical doctor or nurse or in the medical profession in any way. You're just an every day person who has absolutely no training who is currently lucky. It's hard enough to live with any disease but to have people preaching that you're doing this to yourself only makes it harder and, in my opinion, is cruel.

Thank You Nurses

May 6-12 is apparently Nurse Appreciation Week for 20071, and for someone who loves the written word, it has taken me quite some time to come up with the right words for the nurses in my life and to explain why nurses in general are so important. I have been incredibly unlucky when it has come to my health but I won’t the mega jackpot when it comes to my medical team especially the nurses.

No one WANTS to be recognized by nearly every nurse in a hospital. It’s definitive and loud proof that you’ve been sick far too long and at the hospital far too many times. I used to be terrified of ever having to spend a night in the hospital. Little did I know that I’d spend oh so many nights in the hospital as a young adult. At this point, I’m recognized and fought over as far as who is going to be my nurse in pre-op and while I’m never with it enough to notice, apparently a similar thing happens in the recovery room in regards to me and regardless of who wins the “Meg’s My Patient” lottery, every nurse who knows me and knows I’m there tries to stop and see me. There’s an upside to this. Several years ago I was under the care of Stephanie, a recovery room nurse who I’d known for years, when she knew immediately something was wrong because I wasn’t my normal self at all. She’s the reason my first case of sepsis landed me in the ICU and treated before it could do permanent damage.

Another post-op recovery room nurse, Blaze, was the nurse on duty a day in September after an infection chest port was removed and in pre-op I took a rapid downhill turn. My BP plummeted, my pulse skyrocketed, I was freezing cold with a fever of 106.2, and seizing. He was with me the whole way, rarely ever leaving my side. When talk of the ICU came, I completely lost my mind. I struggle with PTSD resulting from my health especially the ICU both for my own experiences there but because less than a full year prior, I’d been forced to see my oldest sister in ICU after her fatal diagnosis of brain cancer. I started sobbing while my mom filled in the rest of post-op and my doctors and Blaze knelt beside me patiently listening to my fear filled sobs about how I COULD NOT go to the ICU. I just couldn’t do it. In the end I was kept in post-op.

The nurses on the orthopedic floor at my hospital are true heroes. They not only attend to the physical issues but the emotional and mental effects as well. Due to my recurrent infections I’ve been in and out of the hospital since 2004 and have cultivated so many friendships amongst the nursing staff. How many nurses come to your 30^th birthday because they’re so glad that you’ve survived another year – another year they weren’t sure I’d get. How many nurses look into your eyes and see the terror you’re hiding with stupid humor and order pizza to have a party in your hospital room? How many spend money of their own to buy you a bagel on their day off purely out of the goodness in their hearts or buy magazines and goodies just for you? (And by the way…they DO NOT get paid nearly enough.) How many nurses send you birthday and holiday cards? How many nurses recognize how important the memorial bracelet you wear to honor a fallen hero that you don’t want to leave it in the room, and volunteer to wear it for you until you’re back from surgery?

When osteomyelitis (a severe infection of the bone) struck my arm there was one late afternoon turned evening when it was just my older sister and I. It’s incredible how fast a 32 (at the time) year old and 36 year old turn into 12 year olds who just “want their mom” when you want something done and it’s taken forever and you KNOW that if mom was there she’d take charge and get things done because nobody messes with your mom. When she speaks they listen. I was still in shock that I now had osteomyelitis in my arm after a 13-year battle with it and other soft tissues infections in my leg leading to the loss of said leg and I. Was. Pissed about it. At one point my sister noticed a nurse we’ve known since nearly the very beginning and whom I have a genuinely amazing relationship with was in the hall and called her into the room,  A few minutes later she told me she needed food and left the room. She KNEW that I needed to talk to someone I trust outside of the family and someone who has been on this wild ride for years with us, again outside of family, to talk to in that moment and I, the girl who can’t stand letting people see her tears, broke down in tears.

Doctors get all of the recognition but it’s the nurses who make medicine what it is and keeps things rolling as fluidly as possible and take on so much of the grunt work. The emotions they circle through during one shift might take the stuffing out of others. What they go through on a daily basis from unruly patients would often cause so many to walk away.

Without the amazing nurses in my life I have no doubt that one way or another I wouldn’t be here anymore both in their care for my physical issues but their care in my emotional and mental health as well. To all of the nurses who’ve been a part of my life, part of my journey, either at the hospital or through home care I simply cannot tell you enough how much you mean to me and that I do not simply rely on my amazing OR teams when things go south for my health – I rely greatly on you.

How SUPERNATURAL Has Helped Me

I know how cliche it sounds to say that a TV show has helped me through some difficult times and anyone who really knows me knows that I don't like cliches. The truth is, though, that a TV show has helped me through some difficult times. It may not sound like much to the average person and many may be thinking that TV is supposed to help much as a great book does by transporting you to a different place and taking your mind off of whatever is bothering you. It's a release at the end of the day and a way to unwind. You plant yourself on the couch or in your favorite comfy chair perhaps with a snack and you let yourself get lost in a fictional world for an hour or two. That is the whole point to shows that aren't news or true crime related.

I've been in and out of the hospital since 2004 unfortunately achieving a surgical count that is above 60 at this point. This count includes the amputation of my right leg and will continue to rise due to the fact that the osteomyelitis bone infections have spread from my leg to my right arm which has so far cost me my right ulna and may end up costing me far more. I'm lucky enough to have an amazing medical team but though it seems incredibly clear to everyone now that the infection randomly moved from one limb to another that I have some form of immune system defect, we can't treat it. The immune system is so vast and while we know a lot about it, we simply do not know nearly enough. That coupled with the fact that I am allergic to so many antibiotics makes treating me a very difficult thing. However, I digress...

Hospitals are never fun places to be and aside from drug induced sleep, you spend a great deal of your time watching TV. There's this two hour period of time mid-morning where there's nothing on any of the limited channels you have there. It's one talk show or another or one news show or another. This is what I'd come to believe until I took a chance on a show a number of people I know had been talking about or even raving about. That show is Supernatural currently on it's 12th season. During that mid-morning lull when not even reruns of any of the Law & Order spinoffs are airing, Supernatural is. I'd thought it sounded a bit hokey but I eventually took a chance and I got hooked. The only problem was that I'd catch an episode here and there of different seasons. Then something glorious happened, Netflix. I could suddenly start at the very beginning and binge watch my way through 11 seasons which is exactly what I did.

I can't fully explain what it is about this show that appeals to me so much and why I consider it another form of treatment that thankfully, I can not be allergic to. I suppose in part it's due to the fact that at an early age I've had to ponder the subject of my own mortality and I've had to face it many times over the years standing on death's doorstep more times than I care to think about. It tackles the subjects of life and death and heaven and hell and even purgatory in an often comedic way though at times it goes much deeper. It tackles good versus evil and how there's some of each in all of us. There's levity with an Angel of the Lord who doesn't understand simple references and the King of Hell having traded his soul when he was alive for an extra few inches below the belt. There's the ever present notion of family and what it means to be family and backs up something I've always said, that family doesn't have to be blood. Who your family is is based on love, loyalty, trust, being there when the chips are down and everything is on the line. As the character Bobby Singer says, "Family don't end in blood." It tackles the issue of sibling relationships and how one minute you love them and the next you hate them but that you always come back together in the long run and having two older sisters of my own I know how true that is.

The truth, for me, is that unless some random thing like being hit by a bus or I'm in a plane that goes down - infection is going to be what ultimately kills me. It's been trying for years and I've thought many times that I must have the Mark of Cain on my body somewhere because I've cheated death several times. Unfortunately, my oldest sister didn't have the Mark and I'd have given it to her in a heartbeat if I could but cancer came and stole her as it steals so many. I, however, survive that which I shouldn't. Severe sepsis with a 106.2 degree fever should have ended me or at least landed me in the ICU for days if not weeks but instead I was back to normal and home the next day. Yes, it left me with what I refer to as "septic headache days" when there's a constant throbbing in my head that nothing touches and was caused by boiling my brain with that fever. In the long run, though, my body will give in to infection no matter how hard I fight because my body is tired and my well of strength is diminished more and more with each infection and each surgery. As the character Dean Winchester says, "I'll keep fighting. I'll keep swinging until I've got nothing left" which is exactly how I look at my situation.

It's not just the show, though, that has helped and continues to help me through the darker moments of my journey. It's the actual people who make the show what it is. It's the actors who I've watched far too many youtube videos of who are truly good people. It's knowing that behind the characters you see on the screen are real people who know they are lucky to be in the position they are in and use it for good and who truly connect with their fans at conventions. I had a complete geeked out Supernatural fangirl moment when I posted a simple tweet thanking the actors for helping me get through so much and Mark Sheppard who plays Crowley: The King of Hell, liked my tweet. I took a screenshot because I was so geeked out. The actors are constantly reminding their fans that bad times don't last and that there's always hope and promote doing random acts of kindness. I suppose what I'm saying is that the actors behind the characters on the screen aren't egotistical dicks as is unfortunately quite often the case.

Supernatural has allowed me to ponder mortality and the facts of my life with both realness and comedy. Do I believe in vampires, werewolves, possession, and leviathan? Of course not. Am I amused by the episodes full of such things? You bet I am. Do I believe in heaven and hell? Honestly, I tend to believe that we make our own heaven and hell in the here and now in how we live our lives. Is there a real hell with a King? Is there a real heaven with angels and God? I don't know but I'd like to believe that if they do exist, they exist much as they do in the TV show. I'd like to believe that my oldest sister is up in heaven with the likes of Castiel and that when it's my time I'll join her there. Until then, and for as long as I am able, I'll keep on fighting and I'll keep on swinging.