Making a Deal with the Devil

I was chatting with some friends the other day, and they of course had to say the chorus phrase that a lot of people say to all chronic pain/illness patients, "I don't know how you do it." I had decided a while ago, I wasn't just going to take that and say thank you and then be done with it. I wanted them to realize that I had no choice. So I of course said thank you, but you don't really understand how chronic illness works do you? They sort of looked at me funny, and said, "I must not." I said I like to compare it to making a deal with the devil. You say I don't like this, in fact I may hate you X illness and everything you're doing to me, but I don't really have a choice(assuming your illness is incurable and fluctuates like mine does) I'm stuck with you, so I will live with you, but just so we're clear, I will never like you. You must in order for your mind to gain peace.  You must for your own sanity.

I remember having "the talk" with my doctor. It was right before he left to go to Texas. He said you're moving too fast for technology, we just have to hope technology catches up and you don't get worse in the process. Talk about a punch in the gut. This was right after he told me he was moving to Texas. And I've said this in past posts, that even after the stroke and knowing that he did something he wasn't supposed to do, he was still so amazing to me. He was the reason I was still here. I remember when I first started having chronic malfunctions, he promised me he would figure it out, and just him saying that, made me feel better, and it made me admire him more. So when he told me A. that he was leaving, and B. that there was basically nothing left that any neurosurgeon could do for me, I was pretty stuck. That was when the thought came to me, "well I guess I need to make a deal with the devil." Truthfully I probably didn't even know what I was making a deal about, but as time went on it became clear to me, that in order to get anything done, I would have to. Because for the moment I was just making excuses, and I knew that if I ever wanted to do anything with the rest of my life, I would have to stop feeling sorry for myself, and accept that I was in pain forever. I know it sounds horrible and it was. But I knew that in order to get the mountain that was in front of me moved out of the way and making my biggest goal come true that was what I would have to do. So, I chose to not really tell anyone what I was doing, and just try and make that deal silently. No one would know about it, but me.

It worked for a while, because I just kept brain-washing myself into thinking this is what I have to do in order to graduate with my class, which was my biggest wish so whenever feelings of sadness or loss came up, I would just push them to the side, telling myself that my wish for that year was more important. I had quite a few hospital trips that senior year, but I was getting so used to going to the hospital that it actually turned into my safe place. It was the one place I wanted to go when I felt bad because I knew they would try help me even though my doctor said there was nothing surgically they could really do for me anymore. I think for a lot of chronic kids, even though they hate the hospital secretly there is a love for it. It's the one place they can be and have complete 100% trust in the people that are there, and hopefully they will end up walking out of that place in better shape than they did when they walked in. That was how I had to treat the hospital, because I was going so much.  I knew if I hated it, that I would have closed myself off to ever getting better, which was what I desperately wanted. After my doctor confirmed that I was just exquisitely sensitive to pressures and that the amount of surgeries that they had done in the amount of time they had done them had done more harm than good to my overall nervous system health, he told me that we needed to keep me out of the OR as much as humanly possible. Little did he know, that in the 10 years since he said that, I would have 8 more brain surgeries, as well as 4 more lab confirmed staph infections.

Having to live your life playing Russian Roulette with a drug cocktail is so beyond words not what I expected I can't even tell you. My entire adult life has been surrounded by decisions being made because of my illness, whether I was consciously aware of it or not. From where to work, to where to live, to what time I go out at night.  Every decision I make is walking that invisible line of a tightrope. It's flirting with both sides, worrying about and not wanting yourself to show too much of either side, and I mean I hope I'm doing a good job? We thankfully don't really have any mentors to look up to, unfortunately not because there aren't any, but because none of us talk about it. We either write like I'm doing, or just make ourselves known within the charity that sponsors research for our illness, but we do it silently. We fight. We fight silently, while tears bathe our pillows at night, we don't sleep because we are wracking our brains with "what if’s" or "could have been's."   Every second of every day we are witnessing the ever-present betrayal of our bodies. We aren't strong because we woke up and chose to be strong. We are strong because we woke up realized that we have no choice in this matter, we have to keep going, there is no alternative.  But in reality, none of that matters at all. All that matters is how you view yourself. Yes, others having a semi nice view of you is always a plus but it's really not what you need. You weren't put on this earth to please people, but if you do hey bonus! So just stay with us, be with us. I can't promise you it will be fun, all I can promise you is that it will be worth it. Maybe not today; maybe not tomorrow but someday, it will all be worth it. So, what about you? Would you make a deal with the devil?  In order to survive?

Living a Life With New Lyrics.

How do you go on when it feels like everything that made you- you is taken away? How do you begin to rebuild yourself? Not really knowing if you like the same things, or even if you're able to do the same things anymore? Well number one is, if you're stubborn, you learn very quickly that being stubborn isn't allowed. Or else you'll never get anything done. Number two is you HAVE TO be flexible, and forgiving. You're not going to be able to do the exact same things you did before the same way you used to, and the sooner you accept that, the easier recovery is going to be for you.

The way I had been living my life up until this point, usually I don't talk about because even though I was living it the same way as any normal teenager, I don't always like to admit what that entails, because a lot of the times it includes a couple of somewhat negative adjectives; engrossed in yourself; only worrying about yourself, it's basically all me, me, me and if I help someone on the way, that's another point for me as well. Now, I want to say up front, that I wasn't always like this, but even when you make a conscious effort to not be like that, you're a teenager, there are bound to be slip ups.  Right after everything happened, I don't really know if I even realized the enormity of it.  Or maybe I did, but I refused to acknowledge it, because it felt like all my dreams were out the window. I think this was part of the reason, so many people saw my personality sort of retract. I was so confused. I felt the "same" on the inside, but I felt like every time I looked in the mirror, no matter how much I squinted, I could never completely see, but another thing that I think drastically impacted the way I recovered, was the fact that I never really struggled with anything before, to the point where I couldn't do it. Usually if something was hard, I would just do it a couple of times and then it would be easy. But after everything happened, everything seemed like it was a thousand miles away, and I was on foot. So it always seemed impossibly far to get to, if I was even going to be able to do if I got there anyway.

Some people don't know this about me, but when it comes to certain things, I'm extremely stubborn. And this was even before my brain injury. But I think when you have a brain injury no matter how severe it is, you almost have to be stubborn. Because your therapists are going to use that to your advantage, whether you realize it or not. And trust me, it drives you crazy. I remember in OT, my therapist would dump out a bucket of coins, and say pick them all up with your right hand. I would pick them up with my right hand while she was looking at me, but as soon as she got up or looked the other way, I would pick up a handful with my left hand. I knew I would gain nothing from doing that, but I wanted to be done with it, partially because my hand was getting really tired. I knew you could get by in life using one hand. It wasn't ideal by any stretch of the imagination, but it was possible. You couldn't get by not talking, or only walking on one leg. So I knew those would come in time. Maybe it was my way of telling myself I had control over my situation? I'm not really sure.

When I got back into my "once normal" routine, I tried going back to the way I lived before. I very quickly realized that if I did that, I would end up mercilessly disappointed. But I couldn't begin to imagine how I could rebuild my life that had just crumbled before my eyes. I had no idea where to start. I didn't even know how to describe my personality, so where would I start in rebuilding it? It was like I was straddling an invisible line, but instead, of choosing one side of it, I tried to walk it like a tightrope. and Yes, I did figuratively fall a lot. Because of one mistake, every monumental decision in my life was morphed into a metaphorical version of Russian Roulette, or at least that was what it felt like. I never realized how hard it would be to essentially "become someone else," or at least that's what it felt like. It felt as if I was just limping through life, with no rule book, trying to become George Washington if I had never heard of him, or anything he did in his life. It's like a theme song for a television show that you've been watching your entire life, you finally know all the words, all the pictures on the tv that goes with each of the words, and suddenly they decide to change the theme song 6 seasons in, AND THE PICTURES. You just think, "is this right, because it feels wrong."

You have to change your ideals, and what you deem as "normal" and not normal. But it's so hard, when you've been doing something one way, for so long and now you have to change every bit of your life, seemingly. You don't want to change what you 're doing when you know that changing what you're doing means that something bad happened to you. It's like every step you take, every word you say, is like reminding you of that horrible night. But you have to turn it into something good.

Just because I had to change the song of my life, doesn't mean I like either life more. And I have said this in other entries, if I had my ultimate wish, I wish I could put my sick life together in a bag with my once healthy life, and shake it up and take what is mixed, but I can't.  I'm thankful for my sick life for the things I was taught, forcibly, but never the less, learned and now I love that I know the things I know. Some of those decisions, were snap, decisions, because we didn't have time, because my life was in danger, some things, I had a week plus to discuss with myself, over what is the right decision. Yes, the lyrics to my song look a little different than they used to, but isn't that what is supposed to happen? I don't look the same as I did when I was five for a reason. Because I'm older and I've been through a lot. 

 But after years of seeing a stranger when I looked in the mirror, I’m finally beginning to see it was ME all along. My illness may be invisible, but I can assure you I am not. I’m not healthy, but I’m living in spite of it. I’m the girl who chose to LIVE life in every sense of the word, with these life altering illnesses. People need to know that I’m not upset, I’m not bitter about what these illnesses have done to my body. Have they changed me? Yes. Have they taken things away from me? Yes, but I’m not going to snap my fingers and have them all come back. And I slowly realized that I’m not upset about having these illnesses, was I upset because of what they did to me? At first yes. But as time has gone on, I’ve opened up my heart more and realized when I did that, I opened everything. And became so much happier. I can finally say, I can look in the mirror, and not only do I recognize who I see now, I’m proud of her. And my new life song is better than the old one! #IChooseLife #WillisClan #CheckItOutIfYouHavent

I Forgive You

Healing doesn’t mean the damage never existed. It means the damage no longer controls our lives.

 –Shahkrukh Khan

Sometimes closure arrives years later. Long after you’ve stopped searching for it. You’re just sitting there, laughing this laugh that is unapologetically yours. As it trails off, the corners of your mouth hug your face and it just hits you, “I’m Happy”. It’s just like that. With no fanfare or epiphany. Suddenly you are grateful for goodbyes that carried you to this moment; to the space you are now holding.    

-word.honey

                                                                                                                                                                             

This is long overdue, I’m so sorry this took so long but I needed time… time to sort out my feelings, time to heal. Just time… I sincerely hope that wherever you are, whatever you’re doing Dr. XXXXX you are happy and doing well, and know that I am going to be forever grateful for EVERYTHING you did for me.

Dear Dr. XXXXX-

I’m sure you never knew I had feelings about what happened on April 7, 2006.  I know I never said anything about it to you. Were you thinking of my best interest when you made that fateful decision? I honestly can’t really think of any other option besides yes, because of how fully devoted you were to my case. Every surgery has risks.  No matter what surgery you’re having, there are always risks; but should that stop you from doing it? I don’t think so, because if it is supposedly supposed to make the patient’s life better you have to take that gamble. Were you really out of options? Did you have time to consider the possible consequences of doing that particular surgery? I’ll never know, everything happened so fast, from what my mom tells me. All I know was that you had done surgery upon surgery, revision after revision and absolutely NOTHING was working, nothing kept the pain to a minimum, nothing kept the shunts from malfunctioning. So did I just answer my own question?  Were you REALLY out of options? Probably. Was what you did even bad enough to warrant forgiveness if it wasn’t intentional?  I didn’t know. Did it ever cross your mind that as my doctor you needed forgiveness because of what happened? Probably not, because I never expressed any opinion about it, but what I know for a fact, was that you would have done anything to see me get better, and to have that night end differently.  I will never be able to thank you enough for that. I also know that it absolutely broke your heart to have that surgery come to a screeching halt the way it did.  I came to the conclusion that there are too many parts of this entire story that I simply will never know the answers to and I had to make peace with that before I could go any further.  There is one thing, however that I do know despite all these unknowns and I’m finally ready to talk about it after twelve long years.

Despite the fact that you took what I then perceived to be my entire future away from me, I’m done fighting with the confusion, and all the unknowns that I believe will always be parts of my story. Was I mad at the time? I honestly don’t think I was, but was I confused? HECK YES, I had different opinions coming at me from every possible angle for a long time, and I honestly think those conflicting ideas are what formed my original opinion about this entire thing.

What is forgiveness? The Merriam Webster dictionary will tell you that it is to stop feeling anger toward ----- (someone who has done something wrong): to stop blaming (someone): to stop feeling anger about (something). I had to truly understand what the act of forgiveness included before I was able to perform the action of forgiving you. I had to understand what you did, the true reason why you did it as well as the most important part, what I was even forgiving you for.  But there’s only so much you can gather from reading OP reports. On paper, it looked like I must have needed that surgery, it truly did seem as though you were out of options, and I know you. You would never do a surgery, unless you felt that it was absolutely necessary, and then even when you felt that it was, you would take extra time running every noninvasive test possible to try and get around it, you were just that careful of a person. Those were actually the first words that ever came out of your mouth to me, “You know I am a very conservative guy.” These were all actions, and statements that I had to decipher the meaning of when I was pondering what it would mean to forgive you. So why was this so difficult? It was a few different things. Was it because I was never going to have an objective opinion on the events that led up to that decision? Yes, I think this was my number one problem (even this letter I don’t feel is fully objective even though I tried desperately hard to make it so).  Was it because I was never going to know the TRUTH behind why you HAD to do it? Sort of. And one thing that always was just sort of in the back of my head I can’t really tell you whether it truly “bothered” me or not, but it was always just “there” was the fact that I never recovered the way you said I would, and my age wasn’t really on my side the way you had predicted. And one other thing that I never really realized and I'm sure we all have done this, but when you say, "oh I forgive you" it's usually a quick thing because it was something you want to get your mind off of, but I didn't want to do that. I knew this was going to be something that was going to be with me for the rest of my life. So I wanted it to be meaningful. People say those three words every day, and it's almost like they're a piece of gold that keeps getting used over and over again. They slowly become tarnished and old looking the more they're used, but I didn't want this to end up like that piece of gold. I wanted this to be special, but I was still so confused. Then I started coming at this from a completely different angle which I thought would be easier, and would lead me in other directions and hopefully I would end up where I wanted to be at the end. I had an idea to examine our relationship- as a doctor and his patient. I think we can both agree it was so much more than a typical doctor patient relationship, even though I never really said much, I could just tell that I was important to you. You told me multiple times that there was just something about me that made me special.

In the 4,015 days (yes I’ve been counting-4,015 as of April 7, 2018) since that night, I have had more than my share of bad days, more surgeries, more infections, but I like to think I’ve had thousands of good days. Yes, I admit it, I said that you ruined my life, totally crushed all of my plans. But that was because I refused to see the great opportunities that were sitting right in front of me, and that they were the same opportunities that were there on April 6^th 2006, except I now saw them with brand new eyes. Looking back on it now, it was exciting, but I was scared to death, at the time.  It was like looking through a foggy pair of glasses, when the future you saw before was in perfect focus, and now no matter how much you squinted or contorted your vision, or tried to clean the “glasses” you could never bring it completely into focus, you just had to blindly walk to an amorphous future that you now knew very little about.  It felt like everything that was an absolute in my future had been transformed into an “if then” statement. I didn’t like unfamiliar things, and to think I was going to have to do EVERYTHING differently for an indefinite period of time absolutely terrified me.  I was so confused, that all I could think to do was blame someone and the easiest person to blame was unfortunately you. I blamed you for tearing my life into hundreds of pieces, for messing up all of my plans, but as time went on, I realized that things could have gone in the opposite direction that night and I could have lost my life.  I recognized my life was already full of small miracles, and not just big tragedies. I had the revelation that the broken pieces of my life could be recycled and turned into an abstract metaphorical painting that could end up more beautiful than the original. I saw that “ruining” something and “losing” something have more differences than they do similarities.

 Like every teenage girl, I wondered what my purpose was in life, why I was put on this Earth, and this experience showed me that even though I wasn’t sure what my purpose was yet, there was a definite reason why I was still here; I was born to be a fighter.  You told me that I was one of your favorite patients. That I was the ONE PATIENT out of hundreds that you were going crazy about, and couldn’t transfer hospitals and go over a thousand miles away until I was with someone you trusted. You will never know what that meant to me.

What happened forced me to look at life in a completely different way.  Yes, having a stroke changed my life, I think it alters everyone’s life in however much a way as you let it. But not everybody is a scared 17-year-old just growing into her own skin when they have it. I think that worked for me, but also against me. Because I was so young, I realized that I had so much of my life left to live, and so that should have been a catalyst to do well in therapy, and for a little while it was, but I admit I was sort of spoiled, I never really knew what it was like to struggle at something so much to the point where I had to repetitively do it for DAYS, WEEKS, even YEARS seemingly with no improvement, and it made me very discouraged, especially when everyone around me was saying that things were getting better but I couldn’t see them.  It just felt like I was going to be stuck in this position for the rest of my life. Not being able to voice my wants and needs, made it very clear to me that unspoken words and actions were forever going to speak louder than spoken ones. I got to sit back and observe, and to be honest, I learned more doing that than I ever did participating. 

I hope you know that I will forever appreciate everything you did for me, both as a person and as my former doctor. I think it was because of this silent admiration that it was absolutely incomprehensible for me to think you could have overlooked something that seemed so important. I think that was part of the reason why it was so hard for me to make sense of it all. It was almost as if I unconsciously glossed over the part that would have been considered to be “your mistake” because I refused to believe that it happened.  My parents were upset, but I think most of the reason for their anger, was they didn’t know the entire story either, it’s like trying to put a story together, that you only have 3 out of 7 pieces to and the three pieces you did have, you weren’t even 100% sure if those were correct. It was like the two hemispheres of my brain were constantly battling each other because neither side knew the entire story, I’m still not sure that I do. It was like one side said one thing but the other side said the opposite.  I knew what I wanted to believe, but I had no clue if what I believed was what really happened. My mom asked you, “How is she supposed to rebuild her life,” and at the time I would say your answer was flippant, but now I look back on it and call it not exactly flippant, but extremely revealing. I’m glad you said it this way because it gave me a window to look through to your life and see how unbelievably hard it was and how much you had to sacrifice in order to do your dream job. You said, “I can’t even figure out my own life, I don’t want to be responsible for telling you how she lives hers.” Right after I heard that you said that, I thought, “No, I’m important to him, he wouldn’t ever say that,” but I now realize the pain you were going through.  Spending sometimes eighteen hours a day at the hospital. It was really true what they said in medical school, you have to give your entire life to this job, and you did just that. I always felt like in your mind, it didn’t matter how long it took, you were going to make me feel better, you were going to figure it out. And you weren’t going to stop until you had done just that. You didn’t have to prove anything to me Dr. XXXXX. They always say actions speak louder than words, and in those four years, you embodied that statement to a T.  

My mom told me that night at about 3am, you simply came out of the OR tired as can be, you sat down next to my parents, and told them, the surgery was semi-successful BUT. No one likes it when there’s a BUT, especially when you’re telling them how their child is doing after surgery. You said you talked to me after surgery, I wish I could remember it, but unfortunately I don’t.  I was really depressed for a long time, because as I said I had been lucky and never really knew what it was like to struggle, but this has been the most painful, supremely beautiful journey of my entire life. I may not know where I’m going, and twelve years ago, that would have made me crazy, but now it’s what makes life fun. I never could have developed the attributes that people say I now have unless I went through something this life changing. 

I’m telling you that regardless of how the past twelve years have gone for me, I’m finally at a place where I am happy with who I see looking back at me when I look in the mirror, and more importantly, I recognize her. I couldn’t recognize who I saw staring back at me for the longest time; it was like looking into one of those mirrors at the carnival, and it absolutely petrified me.  Yes, you made a mistake, but you helped me in so many other ways, in the two years after that fateful night. In those two years, you did everything possible to figure out the genesis of my now constant pain.  You treated me like your own daughter, you took my story to every neurosurgery conference you went to, you even gave me a copy of the PowerPoint that you showed doctors from all over the world. I still have it. When you went to conferences, you weren’t worried about people judging you for your actions, all you cared about was putting the best minds in the world on my case. I will never be able to thank you enough for this. You may think that because you weren’t able to figure it out you failed. You didn’t fail. You kept me alive for the five years I was in your care. You will always be my favorite cowboy boot wearing Elvis look-alike. Does this mean I would change the way my life has been? That’s been hard question to answer, because I’ll admit I was angry and confused for a very long time, and yes are times where I want my leg, hand, and arm to “work the way they used to,” but I think the ultimate answer despite all of that is No. I’ve learned way too much. Do I think this 100% of the time without fail? No, I don’t, but I needed to ask myself some questions, number one being was it hard? God yes, this has been the hardest never-ending test of my entire life. Question number two would be is anything that’s worth it easy to accomplish? In most cases no. There must be more good things I’m going to gain from this, or else I would be 100% by now. That’s the way I see it. The way I’m feeling now is that even though a stroke is obviously devastating, it was the wake up I needed to realize that life is hard. It took me every bit of strength I had to take a deep breath to say a sentence. I realized that in order to achieve things, you must try your absolute hardest, and put 150% in everything you do and to never give up. I fully believe I will be recovering every day for the rest of my life, April 8, 2006 was just day 1 of this incredible adventure. And so back to that question, would I take it back? No.

I’m infinitely positive you would never purposely hurt me, that’s the reason I put all my trust in you. You know I loved you like my own father.  Heck I probably spent more time with you than with my own father during those two years that I was my sickest, I probably saw you more than anybody. The thing I discovered about myself is bigger than you will ever know, and without the terrible events of April 7, 2006, I don’t think I would have ever discovered it.  It seems so simple and I think that is the reason it’s so very often overlooked. I discovered that I had the power to forgive you. No one else has the power to forgive you for the tragic events of that night except me; no one can take it away from me, I have the power to use it in any way I want.  Why does this seemingly effortless action have so much power? I’ve been asking myself that question for twelve long years and this is the answer I came up with. Forgiveness is as much for the giver as it is for the receiver. It allows you to acknowledge that the action happened, but it also enables you to say, yes this happened, but I’m not going to let it have complete power over my life. I never really realized how much this was weighing on my heart, until I came to the conclusion that I wanted to forgive you. Just then I felt this 1,000 lb weight was lifted off of my chest. But, the fact remained, that if I forgave you, it was all going to be permanent was looming over my head, and so I had to decide if I was truly ready to do this, especially since my complete opinion of this hadn’t really changed in 12 years. You can’t just take something of this caliber back after you say it (especially on a blog that everybody on earth has access to).  This was something that I had to come to terms with. And after twelve years I am finally ready to say it.  That in spite of everything I just mentioned, all the heartache, all the nights of crying in Comer, looking out the window of the 5^th floor family room at a world that that looked so incredibly foreign to me; a world that I really didn’t feel a part of anymore, all of the weakness and everything that happened on April 7,2006-- -I forgive you.

One mistake should NOT erase the six years of successful surgeries I had with you. Your job was to keep me alive for however long I was in your care and you succeeded, it wasn’t without bumps and bruises, but life isn’t meant to be easy. You and your former team have saved my life countless times, and that will never be forgotten. This experience helped me find myself- it helped me realize what true strength is, it helped me to see that just surviving until the next day, can make you feel strong even on your weakest days. As the years passed, I was slowly coming to terms with the fact that nothing I did; nothing I wished would ever make this go away. I had to turn it into a learning experience. I had to turn this into something “good.”  Knowing you the way I came to know you in the six years you were my doctor, I know you would have never purposely put my life in danger. The last thing you ever said to me was the one thing I remember most about you. It was that if you ever had a daughter, you hoped she would be like me- petite with an aura of quiet confidence, then you said you were really going to miss me and Good Luck, and that was the biggest compliment I could have ever received.  We never got to have a REAL chat, and for that I’m so sorry. I would have loved it; I honestly don’t think I ever said more than three words to you at a time. Forgiving you doesn’t erase the past, but it makes way for bigger and better things to happen in the future. I have you to thank for giving me a future to prepare for. I’m sorry you couldn’t fix me Dr. XXXXX. But know this- I will be forever indebted to you for everything you did do for me!  

You know who this is from.

Why I wish I was Confirmed Later

In the past few days I’ve heard of a lot of people’s children getting confirmed. That had me thinking. I wish I was confirmed later in life. I know that I had no idea what the  magnitude of being confirmed was or even what it would bring to my life, and if you asked me how to pray I would probably stare at you stonefaced for about 30 seconds before awkwardly turning around and going the other way. I picked a saint (St. Cecilia)because I liked to play piano, not necessarily because of what she brought to the religious world and how she was martyred for it. Honestly I probably didn’t even know what a martyr was. 

Right after I had the stroke I remember looking at my hand. Just staring at it for hours; trying to get it to open. I remember I would take a deep breath and just literally stare at my hand. I really don’t know what I expected to happen, because just because you want something to happen doesn’t necessarily mean it’s going to happen. So after staring at it for about 10 seconds I would take another deep breath and try with all the strength I had to make my hand open. I remember the muscular pain and how I could get some of my fingers up but not all. And then I would try wiggling my fingers. That didn’t happen at all.

 Just then I thought about the piano. I never until that moment realized how strong my wish to try for Juliard was until it seemed impossible. I couldn’t even open my hand from a fist and forget moving any of your fingers independently. I felt as though trying for Juliard was impossible. And everytime I looked at a piano or a keyboard my heart sank to the floor. My mother had told the occupational therapists that I played and they all sang the song of, “Oh that would be awesome for OT.” But when they came into my room and I couldn’t even open my hand from a fist that was so tight my knuckles were white and I had bright pink nail marks in my palm, tears filled my eyes. And I decided then that I never wanted to play the piano again.

As the years passed and I was intensively doing occupational therapy to try and get some movement in my arm, wrist and hand/fingers back, I thought about the piano a lot. It was like my brain was two people. One side said try it but the other side said not a chance. I began thinking of St. Cecilia and her harp. I questioned things a lot. Why if I had all this talent would it be so savagely stripped from me? Why wasn’t Saint Cecilia helping me? She was a saint right? So she must have had some sort of super human ability... (not really) but I just very childishly thought that by my praying to her she would make my hand all better. Little did I know that everything that lead up to the stroke and the next 10 years would be the most painful years of my life. But I learned more about music during this time than I ever could. And I never sat down at the piano not even once. I would walk by it in my house, and stare at it. Almost like I was trying to telepathically speak to it. But it had turned itself into something I hated but at the same time, something I needed and loved with all my heart. 

When I picked St. Cecilia as my saint for confirmation I had absolutely no idea that during my later high school and college years she would take a starring role in virtually everything I did. I thought about piano all the time. I told myself that I wanted to start again. But at the same time I was so afraid, because it wasn’t just my fingers that I couldn’t move anymore. I didn’t have the strength in my lower leg and foot to pedal anymore. My entire arm ached when I tried to play a scale. My entire view of music had been transformed from something I loved into something I loathed. And I was heartbroken. So I turned my sorrows into prayers. I asked God if he really wanted me to play the piano then have Saint Cecilia speak to me through music (not really knowing if this would happen or not). 

I was in college and I suddenly figured out I needed a fine art to graduate. I was looking through at the classes that they had and thought, art? Nope can’t move your fingers. Piano 101. That should be easy considering you have about 16 years worth of piano theory stored in your head. No one needs to know you played and plus it was long enough ago that you can fake it. And who knows maybe this will be good for you. And so I signed up for piano 101. The first day of class came and the first words to come out of the teachers mouth were welcome to piano 101. Raise your hands how many people here have at least 3 years or more of piano experience as well as theory? And I thought don’t say anything don’t say anything, and then she said the one thing that always makes me feel horrible tell the truth lol. And so I raised my hand. She looked at me and simply said how long, and honestly at that very moment I was thinking lie through your teeth, but then I thought she’s a nun so I’ll probably go to Hell if I lie to a nun, and so I sort of rolled my eyes and said like 13 years but I very quickly followed that up with but I haven’t played in like 4 years I swear. And she literally said, “get out”. And I was just like,” what? Are you seriously kicking me out of this class”. She said I want you in piano 240. And I was just sort of looking at her with a sort of dumbfounded look on my face. Really I was thinking shit. You could have just kept your mouth shut and faked it... But piano 240 ended up being one of the best classes I took that semester. 

I realized when I sat down at that piano and put my fingers on the cold keys I had this feeling. And the first couple of times I played I couldn’t exactly place that feeling, but I knew it felt familiar and I knew I liked it. As I moved on in that semester I realized that feeling was joy. I realized why I had felt so sad in the past few years. I remembered the joy music brought to my life. And even though my fingers were and still are pretty much paralyzed I’ve been able to play. And that semester I was able to play well enough to get a decent grade. I means she knew my story and so I think she was sort of lenient. But all through that semester when I would practice and my hands and fingers would ache with exhaustion I would look at the picture I printed out of Saint Cecilia. I would lock eyes with this picture and it was almost like she was speaking to me. Telling me she knew how hard this was but to just remember the joy music brought to my life and in that exact moment I realized it didn’t matter how well I played or if I could play an entire Bach invention with 0 mistakes. It was all about that intense joy I felt in my heart when I played. It wasn’t really about how good I was or how accomplished I could become. And only then (9 years after I was confirmed) did I realize the true reason I picked St. Cecilia as my patron saint for Confirmation.