Passion

Passion. I've been reading some extremely passionate posts as of late that are getting to me. Since I have been unable to think about much else than the hidden agenda behind the posts I am going say something.
Passion is hugely important in any life, that is a fact. Having passion for something gives life purpose and direction. Passion is something that allows us to explain why something is important to us with conviction. That being said, forcing your passion down other peoples' throats doesn't endear you to that person any faster. I am passionate about many things but I don't believe that anyone else has to be passionate about what I am. I am totally comfortable being alone in passion and don't need validation from anyone else.
I was going to leave it at that, cryptic as it is, but I can't allow myself to let it go. Perhaps I am in the minority but I feel the need to speak for myself whether or not anyone agrees with me. I know that the words "inspiration", "hero", and recently "warrior" are irksome to many adults with disabilities. I don't resent any of these words, when used in context, of people who genuinely find my life story to be encouraging. I don't relish the responsibility associated with being an inspiration to someone but, simultaneously, I am not phobic of the title either. It is a personal choice to accept or condemn the use of these words and I have chosen to accept the term, assign it to others, and live life to the fullest no matter what. However, more than anything, I find it hurtful to say that families who have lost their children to SMA should not refer to their lost loved ones as "angels", "heroes", or "inspirations". I will not say that every family must subscribe to these titles as it is a personal and familial choice. I will say that families who choose to use any or all of these titles should not be condemned for doing so. I do consider many of the battles being fought by tiny children worthy of being referred to as heroic and inspirational. I look at the struggles faced by many of the children and find myself in awe of their strength to push through the toughest of times. Mothers and fathers who have lost their children and remain dedicated to the community and awareness are the most heroic in my eyes; my own father being one of them. SMA, whether you choose to recognize this or not, steals the lives of individuals every year and it is a reality that parents around the world have to live with. It is disheartening, to say the least, that certain individuals can't see how their statements could be extremely hurtful to those who have lost someone to SMA. I am in agreement that SMA isn't a wicked aspect of my life, I have things about myself which I have no control over and certainly can not change. It does not make me or the disease wicked...It just is... I must completely disagree that assigning titles such as "hero", "angel", or "inspiration" make someone lesser or to be ridiculed. We do not know that family's journey to using those words to describe their loved one and should not judge what we do not know.
In conclusion, I know August is a month of passion for the SMA Community geared towards awareness. Don't worry about the wording of your awareness posts if you choose to include warrior and angel in your posts. In my opinion warriors are individuals who fight battles; whether those battles are fought with the mind or with the body matters little in the long run. If you are fighting for something, anything, you are a warrior to me. Fight on

Seize the Moment

For days now I have been trying to think of a way to say what I want and not have it sound cliché or, worse yet, stupid. It is ridiculous how many people find a phrase and say it so much that it starts to lose the intended meaning. That is exactly what I don't want and, while it is flattering to be quoted, I didn't write this so don't quote me.  There, now that that is out of the way, let's get to the point...

For most of my life, at least since I was 9, I have said that quality of life is more important to me than quantity of days. There is quote that might better explain it; "I'd rather have thirty minutes of wonderful than a lifetime of nothing special." ~ Steel Magnolias. It is the truth for me. At 9 years old I probably could not have expressed it in such a heartwarming manner but I certainly have lived my life in this manner for a very long time.

Unfortunately, the last year or so has kind of flipped that around for me. Certainly there have been moments where the quality far outweighed the quantity of time (see this collage of photos from June 2012) but more often than not I have found myself simply existing. That was never part of my plan but we don't always get to control how the moments play out in our lives.

 I learned very early on that I can control very little in my life and that is, a lot of times, a great thing. I would not have had some of the amazing experiences I have had if I insisted on being in control of the situation. Control is important in some situations (medical treatment, for example) but I am far more accustomed to not being in control...but I digress.

Existing seems like the easiest path when you're not feeling well. It is easier to sit back and relax than to continually push for a quality moment. That being said, I have come to the conclusion that I don't want to live that way. I have been given the opportunity, denied to so many, to live. I should not waste that opportunity by simply existing in it. Will every day be fun filled, memory making, never forget kind of day? No, probably not but that doesn't mean that I don't owe it to myself and life to live it.

I recently finished a book, Forever is Over by Calvin Wade, that basically summarized what I want out of life in the first chapter. Obviously I am well aware that not everyone can or will choose to live their life this way but, if you do, do it well and with passion. For yourself, your children, everyone you know because life is worth it.

Enjoy it, learn from it and more than anything, never take your health for granted. Don’t just seize the day. Seize the moment. Every single one.

PS I Love You

(This post is a few days late or a few months early, depending on how you want to look at it. Either way it is important to me so please, read on...)

In the traditional sense of the word love, I may be the most naive 25 year old ever but that is okay with me. You see, I don't have an epic love story, pop music love song (containing far too many "baby, oh" lines), not even a love limerick to be shared with the world. Nope, nothing. But my love story is better than any Hollywood blockbuster or chart topping ballad; it is real and heartbreaking.

Logan with his B4SMA Blanket

It isn't a fairytale but it does begin long ago and far away in a land called Arizona. At the time, I was a junior in high school. I spent a lot of time on the internet because, other than precalc, I finished school work pretty quickly and was weeks ahead due to being homeschooled. On this particular day I came across a post on an SMA website pleading for help. The poster had a good friend who had a son who was critically ill and in the hospital. At 6 months old, this baby had already been resuscitated several times by his mother and father. Jennifer, the friend and poster to the SMA website, and I became fast friends. We would email frequently about ways that the hospital could help Logan do better. We also sent Logan a blanket from B4SMA. The blanket was covered in teddy bears with wings. I had chosen the fabric months earlier because it reminded me so much of my sister, Emma, who lost her battle with SMA in 1992. When Jennifer said that Logan's nickname was Logibear, I just knew that he had to have the teddy bear angel blanket.

After Logan was discharged from the hospital, Jennifer got me into contact with Shelle, Logan's mom. Over the next few months we communicated almost daily. I fell in love with Logan's spirit and his family. During the fall of 2005, Logan's dad, Chris, asked me which baseball team I liked better, Mets or Yankees. Being raised in NY one would think that I would have a preference but I really don't like baseball so I didn't have answer for him. I told Chris that I didn't like baseball but I liked the Steelers, knowing that Chris was a huge Pittsburgh Steelers fan. He was so excited by that response that he said someday Logan and I would be engaged and married.

Now, I know what you must be thinking. An approximately 17 year age difference is not okay. But it was the real thing. I don't mean that I was robbing the cradle. I loved Logan and he me. Just like a real boyfriend and girlfriend we sent each other gifts and "emailed" and Skyped often.

In February 2008, I was in the hospital recovering from the flu and trach surgery. I was discouraged and just generally unhappy, having been in the hospital for more than 50 days at that point. I received an email with several photos attached from Shelle. (I'll include the pictures below so you get the full effect)

Needless to say I smiled for the first time in days and quickly responded with my own picture (which I can't seem to find, regretfully). In any case, I said yes and throughout the SMA Community we were considered engaged. Logan sealed it with a promise of a ring as soon as he saved up enough allowance.

After over a year of being engaged to Logan, the unthinkable happened. For all intents and purposes it was a typical Monday for me. I slept in, not having class at all that day. Around 11, Brenda woke me up and I instantly knew by the look on her face that something was wrong.

"What?" I asked, not trusting my voice to say anything more. Brenda looked right into my eyes and said the worst two words in the world.
"He's gone."

I didn't even have to ask who, I just knew. Logan hadn't been sick and yet I knew, deep down inside my heart, that he was gone. It was not long after that my cellphone rang. It was Jana, one our SMA friends, calling to tell me what happened to Logan. As I listened I cried. He was only four years old and he was gone. After I hung up the phone, I threw myself into making a video of Logan's glorious life. Shelle and Chris used the video at the celebration of Logan's life.

I never got to meet Logan in person but everyday, he reminds me of what true love is really about. It doesn't matter that we were 17 years a part in age or thousands of miles a part in distance. Logan loved me and I him...I always will. Love isn't about numbers, it is about the signs I get on my worst days or my best or even while writing this post. Logan would have been 8 on the 5th of this month and I still miss him every day.

P.S. I love you, Logibear

The Ugly Truth

 

In the winter of 2010, I wrote that I was privileged to have SMA. Now that privilege doesn't seem to ring as true for me. Shocking, right? I am usually the girl you can count on for the upbeat and eternally positive. Don't worry she didn't go anywhere permanently she is just on brief hiatus. Today I am a grouch. I am angry. I am whatever the inverse of happy go lucky is and most of you don't know that side of me. But please don't be afraid because I think you will understand, once I get to the point. Bear with me...

At 25, I have had my fair share of bad days. I remember clearly the first day that I realized I was different. Oh the horror of being 6 years old and realizing that I was, to my udder amazement, not the stereotypical first grader. Staring at the brick wall of my elementary school, in a self imposed time out, I came to the realization that I was different. This epic awareness of my differences was terrifying at age 6. Where had I gone wrong? Why did I have to be different? As the reader, you feel for 6 year old me, don't you? Suddenly aware of the huge differences between myself and the other 6 year olds that made up my playground playmates. But as the reader you are also assuming that I cried, hot streams of anger, because I could not participate in some physical activity that segregated me because of my physical limitations. That is where you would be wrong. Those tears of inequality streamed down my tiny round face because I had suddenly realized that I was not and would never be African American. Yes, it seems ridiculous now that it had not occurred to me previously that the whiteness of my skin disqualified me as an African American but the 6 year old me was devastated . My differences in physical ability or lack thereof didn't impact my self esteem until much later in my life.

Now, what was the point of that story, right? My point is that, in general, the situations that are supposed to make me mad, don't. I am not angry that I have SMA. I am not grouchy that the things that I could do 5 years ago are a distant memory of abilities. I am privileged that I am alive. I am privileged to have been raised by individuals who didn't let me have pity parties often. Today sucked and everyone would agree with that assessment, SMA or not. Having said that, it doesn't mean that tomorrow won't be a great day. (it probably won't be because it is going snow and ice tonight but that is another story for another day) Seeing that today was not so great doesn't guarantee that tomorrow won't be at least a tiny bit better. Having SMA isn't the privilege; being alive is!

Its Not in My Chart or my Declaration of Independence

The following document is something that I got from a great friend. He gave the bare bones and I filled it in with information that I think is important. The information below is intensely personal and real. It was written over the course of 2.5 years and contains a lot of information that is not public knowledge; until now. Comments are always appreciated but please be gentle with my life. Please feel free to take components of this and make it your own. Parents reading this, consider creating something smaller and similar for your child. It can be as simple as your child's likes and dislikes. Whatever you think physicians, nurses, respiratory therapists, other therapists, etc need to know that isn't in a medical chart.
 

Hospital Experiences

As many of you know, I was released from an 11 day hospital stay on Friday. My second shortest ever. During those 11 days, I learned a lot about myself and the people caring for me. Let's begin with the fact that I have been going to this hospital for about 4 years. Despite the fact that they have recently relocated, it is the same hospital. Going to this hospital, I know what, and usually who, to expect. This time was different, very different. Since the relocation of the hospital, the floor that I used to be on has been divided. Basically, the RNs chose up sides based on their interest in intensive care or asthma and cystic fibrosis. This was a bit concerning for me at the beginning...I've grown attached, felt comfortable with, knew who would take awesome care of me. Day 2 of the hospital stay brought my first change in care providers: a new nurse, a new male nurse. Let me state for the record that I have zero issue with nurses gender and quickly found a groove with him. He teased me, I teased him. That made for a great report between the two of us. During my stay, I ended up with 6 new-to-me RNs, quite possibly my record. I didn't get along with all of them. Some days were spent wishing that those twelve hours would hurry the heck up, while others were spent wishing that the 30 minute breathing treatment could last just a little bit longer. This isn't to say that any of medical professionals were bad at caring for me; they just didn't fit. I, personally, didn't care for their reactions to certain situations, their level of attention given, or any number of little quirks. We just didn't fit. For people who are hospitalized frequently or for a long period of time, the hospital staff becomes the epicenter of the patient's social life. Good or bad, right or wrong, you are forced to spend 24 hours a day with these people. Like it or not, you have at least 4 hours with someone who may or may not know anything about you, your underlying condition, or the reason you're there. It is a job to many, nothing more, nothing less. They are being paid to make sure you survive their shift. Sometimes the individual will go above and beyond, remembering that you are a person, basically trapped, and treat you with kindness and respect. I cannot say that I experienced more than either kind of medical personnel, but having just one in your day can, unintentionally, ruin it. That being said, my carers, for the most part, brightened my days. From the RT who held my hand and wiped my tears during the 7 attempts to place a PICC line to the nurse who hasn't taken care of me since my second hospitalization and fell right back into our routine. From the PT & MT who teased me mercilessly just to make me smile to the RT that would bring students for me to teach to break up the day. From the RT student who reminded me that I am just a girl and it is okay to talk about normal 24 year old things to the physician who stayed all of a Sunday just to insure everything went well for the following day's surgery. Hospitalizations are never fun but you make it bearable.

Change

Change is something that many people do not embrace. I happen to be one of them. Whether it is something small, like bad weather canceling an event, or something big, like an unpredicted medical crisis, I don’t like change. For me, I think most of my problem with change results from the lack of control. I don’t have control over much, physically, because of my physical disability and when control of my plans is revoked, I hate it.

So when forced to deal with change, I begrudgingly meet the challenge head on and try to accept it. That doesn’t always work for me and the people in my life. My most recent experience involved my very least favorite kind of change: a change in my medical team. Most people are aware that I have a great deal of complex medical needs which requires my physicians to be willing to think outside the box for the majority of treatment options. Throughout my 24 years of life, the members of my team have changed more times than I care to recount. Most of these changes were as a result of the physician moving on but some have been removed from my team because of their unwillingness or inability to think of me as more than medical record number blah blah blah. Despite the medical establishment’s general unwillingness to be open to someone defying the statistics, I must continue to utilize their services. My medical team, as of January of 2012, was finally beginning to take the shape of a winning team. With physicians from most of the –ologies, our success rate wasn’t great but they were learning to listen to me and my family. Then my world came crashing down…one of the physicians, the one that I trusted the most and had known the longest, announced that he was moving to another state for the next 2 years. What? Why? What am I going to do? He assured me that I would be in good hands and he would still be available for consultation if I needed him. Having previously been involved with almost all of his colleagues, who left me unsure of their competency at best and afraid for my life at worst, I was heartbroken and frightened. Unless he reads this, he’ll never know that I was literally counting the days until his return. While he did his best to reassure me that all would be well, I still had reservations. That was until he told me who my new doctor would be in his absence. Relief washed over me as we discussed, at length, who the new specialist would be and his understanding of my complex needs. Great! It’ll be just like old doctor was still here, right? Wrong, very, very wrong…

While the new physician is a kind person and listened to us, his lack of knowledge was concerning. Knowledge is power, right? So why after years of education, was his best answer “I’ll have to get back to you”. Better than pretending he knew exactly what to do but still. I was open minded going into the appointment but came out discouraged and confused. My new physician may not be a part of my team for very long but he will know one thing when we’re finished… Medically speaking, I’m difficult. I don’t follow the natural progression associated with any of my diagnosis and for the most part, I am infamous for throwing curve balls. That being acknowledged is a major part of being a successful team member on my medical roster. I’m difficult, I know that. But don’t count me out just because I’m beyond your level of expertise.