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.

Ignorance is Bliss

Not much gets me as fired up and passionate as someone questioning my quality of life. Lately, in the communities I’m a part of, the topic of quality of life for someone with a severe physical disability has come up. Although the issues are separate topics (one blogged about by a family, the other two by nationally televised programs) I found myself feeling frustrated by the beliefs expressed in all three forums.

There is an old saying that goes “ignorance is bliss” but, in my opinion, that couldn’t be further from the truth. Lack of understanding, in my experience, leads to a great deal of misunderstanding. Looking at the child version of myself, you would not have thought anything was wrong with me…you would have thought that I was an average baby girl. My parents learned that I had a potentially fatal disease called Spinal Muscular Atrophy or SMA. In 1988, they weren’t offered much, other than “take her home and love her”. To this day my father says “as if we would have done anything else”. The truth is, my parents did exactly what they were told but also took the diagnosis and its accompanying timeline of a maximum of 2 years and lived. As a child, my parents insured that my life, and that of my younger sister’s who also had SMA, was full of ordinary things. We attended school, went to the beach, family vacations, spent time with friends, had tea parties, and so much more. There were medical things that had to be addressed too. We had daily breathing treatments, physical therapy, speech therapy, doctor appointments, shots and hospital stays. It wasn’t the life that my parents imagined when they found out they were having a baby but it was an awesome childhood. In 1991, my father became an unwitting single parent after my mother was killed in a car accident. He was forced to take on the role of mother, father, doctor, nurse, chauffeur, chef, and so much more. In the next year, we also lost my sister to SMA and we became a family of two. Life changed drastically as we moved and attempted to start over. Despite the hardships, my dedicated caregiver, Brenda, ensured that my childhood was nothing less than extraordinary. SMA limits my ability to do almost everything independently. I have never had the ability to sit, crawl, stand, or walk but that didn’t keep us from doing anything I could think of, from horseback riding to canoeing to flying in an airplane. My world was only limited to my imagination. Despite what passersby’s may have thought when they looked at me, I have lived an extraordinarily happy life and I’m not done yet.

Quality is defined as “The standard of something as measured against other things of a similar kind; the degree of excellence of something”. So I guess that one could say that you don’t know quality until you have something to compare it against. In this instance, no one can judge what quality is to another person. Like it or not, I feel that my life is a quality one worth living. Despite needing to rely on life giving equipment, I enjoy myself and feel that today, at the very least, is worth it. I can’t judge another person’s quality of life because I don’t live it but my inability to accurately predict that there will be quality moments in every day should not allow me to quantify their days. We’re not born with an expiration date that is visible to the world and as such no one knows how long they have. I agree with most people that however many days you have; they should be made the most of. But, that being said, into every life there must fall some unpleasantness. Not many children enjoy car seats, yet any responsible parent makes their children use them because they are to protect them. Similarly, my father chose to protect my life by providing certain equipment that may not have been my favorite. Everyone has the right to decide what is best for their family and child. I don’t have to agree with anyone else’s choices but please don’t force your choices onto me. My life, my choice. I know that life is a terminal experience and that my days are fewer than they were last week but I am determined to enjoy this “terminal illness” because that is the hand God chose to deal me. It can be hard but life would not be worth fighting for if it was easy.

From the outside looking in, you might assume that I have nothing to live for but you would be wrong, dead wrong. Yes, I require a trach and ventilator to breathe. Yes, I have a feeding tube because I can’t eat enough by mouth. Yes, I use a power wheelchair because I can’t walk. Yes, I have been in the hospital longer than I can count. But when I wake up in the morning and look out the window, I’m thrilled that I have the opportunity to live another day to its fullest. I have bad days, like everyone else, but despite what you might think, I also have some amazing days. My quality of life is probably better than some able bodied individuals. I know, at 24 years old, I’ve outlived the doom and gloom prognosis given to my parents by more than ten times. I know that tomorrow is not promised to anyone so, despite what you might see as limitations too large to overcome, I will live this day, and every one after it, to the fullest. My disabilities are made disabling by others ignorance. “Ignorance is bliss”…or is it?