The Meaning of Hope

“I had to stay alive, keep breathing, even if there seemed no reason to hope…” 

Some people read this quote off my ribs where it is permanently inscribed and think that is morbid, and sad. I, however, have always found it to be beautiful and have always read it to mean that no matter what, there is always, always reason to hope. Kalydeco, the first drug EVER to target the actual defect that causes cystic fibrosis was approved today by the U.S. Food and Drug Administration! This is hope, if I’ve ever seen it. Until now all drugs in the CF pipeline have been therapeutic not curative, and while we are still far from a cure, we are closer than ever. The hope that we’ve all carried in our hearts has turned into a wild fire and is blazing, the cure that so many generations have dreamed of and hoped for is around the corner! All of the funds that we’ve raised for decades, all of the time, all of the commitment, worked. It worked. While this drug is currently effective for only 4-5% of the national cystic fibrosis population, it tells us, loud and clear, that defect altering treatments are possible.  My heart breaks, it really does every day, that this didn’t come in time for my two beautiful cousins, that our efforts couldn’t save them and so many others that we have lost, but still I can’t help to feel elated that so many lives have been changed today by the approval of this drug and that so many lives will be changed in the coming years as more and more of these treatments targeting more and more mutations are discovered and approved. The CF community defines hope, they have fought a relentless fight against a cruel and devastating disease and they are winning, their hope, their conviction, their love of life has not waivered, and the approval of Kalydeco is proof.

There is always reason to hope, no matter the situation, no matter the challenge, no matter the hurt and the pain, there is always, always reason to hope. 

For more information read this article from the Washington Post: Vertex drug is breakthrough for handful of cystic fibrosis patients, offers hope to many more

Or go here: FDA Approves Kalydeco (VX-770) - First Drug That the Underlying Cause of CF

Or here: Kalydeco, Drug That Treats the Root Cause of Cystic Fibrosis, Approved by FDA

 And to donate to the Cystic Fibrosis Foundation to help continue this amazing research for new drugs and a cure for cystic fibrosis click on the Great Strides box on the right side of my blog :) (myself, my friends and family, and the 30,000 CFer's nationwide and their friends and families thank you in advance!)

The Good Doctor

Last week, I had a surprisingly pleasant visit to the doctor. Shocking, really, I mean it, it’s absolutely shocking. Doctors, hospitals, needles, diagnostic imaging, cold exam tables, white rooms, paper gowns, medical students etc. have all been familiar to me for quite some time. And save a few kind encounters it’s always been particularly uncomfortable. Starting out in the medical world at such a young age softened me a bit, but the older I get the more aggravated I get by the blatant invasion of privacy and total lack of respect for a patient as a person. It is rare to go to a doctor and leave feeling like they knew there was a human being, a real person, underneath the gown. I’ve been privileged to see a rheumatologist every 3-4 or 6-8 weeks since the ripe age of 11 years old, and I did really love that doctor, he was the doctor I wanted to be (when I was going to be a doctor) and he still encourages me to be a doctor, likes to tell me the perfect time during my residency to start a family, and it’s written on the front of my two inch thick chart, “wants to be a doctor” next to the “Binghamton University Class of 2012 2011”. As kind as he has been, as loving and truly concerned as he has been, I feel that he has lost sight of me, and after 10 years, my diagnosis has been set in stone though my symptoms, my blood tests, and the course of my disease has greatly changed. It also sometimes seems that I am still a 12 year old girl rather than a 21 year old college graduate. All in all, it’s been a journey of inconclusive and incredibly invasive tests, multiple specialists, tons of prescriptions, a few admissions, plenty ER visits, and some less than, some more than, pleasant doctors.  Last week though I caught a glimpse of the light at the end of this very long tunnel. 

I have found the good doctor. I was asked if it was okay if a resident joined the physician when he came in to exam me. That resident and the doctor also introduced themselves and shook my hand upon entering the room. They sat down thanked me for bringing my previous records and then began a discussion. Asking about my work, what I was studying here, and then about my symptoms, what’s been going on for the last 10 years? Now before I go any further I have to admit that when I arrived at the office I was ready to leave, I felt like I knew how this appointment would go and really I should just leave. Everyone in the waiting room was 60+, well I think that’s generous, probably 70+ with canes and therapeutic shoes. Having a diagnosis of arthritis usually lands me with geriatric patients, like the time I was paired with an 80 year old woman at physical therapy so we could do our exercises together (I wanted to cry) but this was literally an old folks home in the waiting room, it was frightening. They were all looking at me, I think expecting me to be waiting for my great-grandmother to come out from her appointment, and they were all shocked when the nurse came out to bring me in. I was further discouraged when the nurse gave me a gown and a drape to wear for my examination, I know I shouldn’t have been surprised but rheumatology exams involve a great amount of twisting and turning and leg lifting and bending and all things most people wouldn’t do while wearing pants never mind in a gown with the opening to the back. Well to my surprise it wasn’t that bad. The doctor actually moved the drape before lifting my foot to my head in attempt to keep me covered and as comfortable as possible. I can’t say I’ve ever experienced that, an acknowledgement that a patient might not want all their bits exposed to the two male doctors or to the nurse or to anyone in the room really. They even left the room so I could get dressed before the walking and bending part of my exam. Aside from all the niceties of the exam, this doctor was genuinely intrigued in my case. He agrees that it was difficult but he wasn’t willing to just stick with my original diagnosis, which has been HLA-B27 positive spondyloarthropathy for the last 10 years with Anti-CCP positive rheumatoid arthritis for the last 8 months. Both of which have been treated very aggressively, making a proper diagnosis even more difficult now, because the damage that we would expect to see from a normal progression of the disease may not be there because of the treatment. He acknowledged that there are multiple things happening with multiple systems involved, he heard my concerns and wanted to address them. He understood when I said I am looking for better answers than I have been given. He also understood that just because something is ruled out doesn’t mean that my symptoms go away we still need to find the cause and treat. Through the years I’ve been referred to so many specialists with a guess at what I may have, and once they rule that one diagnosis out I am dismissed and no one looks any further. It’s as if because they didn’t see any demyelination on my MRI that my blurry vision and pain and numbness in my arm have magically disappeared, when (obviously) that isn’t the case. I’m going back to this doctor in two weeks, I had blood drawn and a few XRAYs taken and hopefully he can tell me something new. I really think one of the most frustrating things is being sick, all the time, feeling sick, all the time, feeling exhausted, all the time, and not knowing why. It feels weird to wish for them to find something but I just want answers. But for right now it just feels good to be listened to! It feels so good to feel like after all these years, after all these doctors, after all this pain, someone is going to try and actually figure it out. I can’t believe it! So, kudos to you Binghamton.

The Life and Love After Loss

This weekend a year ago was a nightmare for many people, Tom Nevins and Tina Collotta, two best friends, lost their battle with cystic fibrosis.  This weekend a year ago also represents for me a turning point in my journey, my recognition of life beyond loss. It represents my dedication to the fight against cystic fibrosis, my passion for it. This weekend this year, we are faced with yet another nightmare. A beautiful young woman Kristi Moats, lost her battle this morning. She was waiting for a double lung transplant. She fought a very hard fight always remaining positive, honestly sharing her story, and offering advice to anyone who needed it. She kept a smile on her face and hope in all of our hearts. Her beautiful spirit and her happiness will shine on and she will be forever missed. I’ve only known Kristi for a short time, she invited me into her life through Facebook and her story and her optimism have inspired me. I know that some of the people I know, friends and family alike,  think that these relationships are somewhat superficial, that these are people very distant from me, that I’ve only known for a year and even that relationship has never been in person, but these relationships, these friendships are anything but superficial, they are real. These individuals have opened their arms and welcomed me in to their lives; they have shared more intimate details of their lives with me than some of my oldest friends. We share a common thread, we share a connection that means more than words can explain. These individuals whom I only know through Facebook, through shared stories, and experiences, through pictures, and through ups and downs; are close to me, they are people that I have connected with across the country and across the world, and there is bond a there, whether we can all understand it or not. Their lives, their stories, their friendships represent my passion for cystic fibrosis. Having been invited to share in their lives, to share in their troubles and their joys makes me even more sure of how hard I have to work to make a difference for the CF community. Feeling their warmth and kindness through short messages, long conversations, or a few words of encouragement has shown me life and love after loss, it has allowed me to continue my relationship with cystic fibrosis and in fact make it stronger. And I really couldn’t imagine it any other way.

My relationship with CF begins with Jennifer and Marissa. They are undoubtedly the most influential people in my life. But my relationship to CF does not end with Jennifer and Marissa, it does not end with the loss of these beautiful women, it doesn’t end. I first grew to learn about and understand cystic fibrosis through their story, through their lives, their medications, their coughs, their vests, their home IV’s, their doctors, their hospital stays, their everything. And I really wasn’t capable to see beyond it, we were all so full of love for them and so full of pain for them. My heart broke like it never did before and like it never will again when Marissa passed away. I was 16, had just taken my stupid chemistry regents (I still resent the subject) when my mom picked me up from school, I figured we’d head to LIJ but that’s not where we went. Jennifer and Marissa were both at LIJ, I had been there just a few days before, spent the whole time in Jennifer’s room on the 5^th floor because Marissa turned into Medusa when she was sick and didn’t feel up to seeing anyone. That day Jennifer went up to the ICU to convince Marissa to be intubated, to allow her body to rest so she could regain some strength. Marissa made Jennifer, as Marissa always did, promise to do something for her. Get listed for transplant, get a transplant, and do all the things she wanted to do but hadn’t done yet. Marissa wasn’t able to regain strength and on June 21^st 2006 she passed away. My Aunt Kathy told me while I sat in her lap, the two of us crying together and Jennifer sitting at the dining room table with the home care nurse setting her up with IV meds, that Marissa asked for us not to be sad, she said that she was happy, she had led the life she wanted, and done more than she ever thought she would. Over the next few days we would spend hours going through pictures to display at the wake, Cheryl (my beautiful sister) and I would tape them to the poster board, with Jennifer resting her head in either of our laps, telling us how her and Marissa had talked about this, they knew that they wouldn’t grow old to be like Aunt Kathleen or Grandma (Aunt Kathleen passed away a week later, and my Grandmother just turned 85 in December) but she didn’t think it would happen yet. I think I cried for an entire week straight, I didn’t sleep at all, I remember being awake at 5am sitting in the living room watching Barney, maybe it was an attempt to comfort myself… it didn’t help and I’ve never seen my eyes so puffy before. The love that I had and still have for Marissa is never-ending, she was my greatest hero, I wanted more than anything to grow up to be her, to be funny, and warm, and kind, to give great hugs, have a perfect Pinky and the Brain impression, know all the lyrics to every Dave Matthews Band and  Phish song, to always win Scattergories, to eat candy and  ice cream like no one else, and to love and give, with all of myself, as she did every day of her life. My commitment to CF is for her, my desire to better the quality of care, my hope to replace some of the pain with comfort and beauty, and my undying wish for a cure is for her.

Losing Marissa made my connection and my relationship with CF even stronger. I refused to be kept in the dark; I was determined to know everything. I researched relentlessly, and when Jen’s condition began to deteriorate, I promised myself that I would be there every single step of the way. I kept vigil at her side after she was listed and transferred to Mt. Sinai for transplant in October of 2006. There were so many moments of love there and of terrible fear while sitting in the MICU waiting room. The moments when it was just she and I, the sound of the ventilator pushing and pulling the air in and out her lungs, the relaxing music channel we constantly had on the TV, the never ending beeps around the unit, and the shuffle of nurses and family members are moments that have never escaped me. Whether it was holding her hand, or rubbing her lip to help her stop biting the tube, or walking arm and arm with Uncle Charlie to the elevator on her first dry run, or combing and braiding her hair after her miracle transplant, I treasure each and every moment. Her life post November 11^th 2006 was nothing short of a miracle. Her devotion to care for herself and to honor her donor with every single breath was amazing. Her life and her love are beautiful and my commitment to CF is for her, my desire to better the quality of care, my hope to replace some of the pain with comfort and beauty is for her, and my undying wish for a cure is for her. 

The individuals that I came to know through Jennifer are the reason for my full and absolute devotion to cystic fibrosis. The moment I felt the most love at Jen’s wake and funeral was with the cysters. The funeral director had begun to give me the cards that went with the flowers, this particular bouquet was blue and orange, Mets colors and Jen’s favorite beyond favorite, the card was signed from the cysters. I was amazed by the gesture of flowers and felt so happy for Jennifer and so full of love for these women, but then I looked up to see them all approaching her casket, two with oxygen tanks dragging behind them and I felt my heart both break and heal at the same time. Their devotion, their love and kindness, their friendship was so beautiful. And I am forever grateful to the cysters for the love they showed Jennifer and for the love they have shown me. When Tom and then Tina passed away two months later, I was in shock, I felt so incredibly sad and so hurt. I felt my heart aching, and I felt unable to comprehend this amount of cruelty, this amount of loss. But from this heartbreak, I began to see cystic fibrosis like I had never been able to before, it was beyond my own experience, beyond Jennifer and Marissa, it was an entire population of beautiful resilient people, it was a world that I had only touched the surface of. And I knew then that my commitment to the disease could not end here could not end with the loss of Jennifer and Marissa, it was only beginning and it needed to be more. I cannot recall how many times I watched Tina’s LIJ video, her confidence, her honesty, and her dedication to change the quality of care for adult cystic fibrosis patients, to raise the awareness of health professionals, and to better the experiences for people like her was incredible and it inspired me and set my path. Her laughter and her smile are missed by us all but her love, her spirit, and her fight will never end. My commitment to CF is for every individual touched in one way or another by this cruel disease, my desire to better the quality of care, my hope to replace some of the pain with comfort and beauty, and my undying wish for a cure is for us all.

I encourage everybody to register to be an organ donor, the choice to become an organ donor is not about death, it is about life; it is about life and love after loss. http://donatelife.net/register-now/

The First Step

I hadn’t planned on this being a current events update on my day to day life. I have been living in my head for some while and this was meant to be an experiment to get me out of my head by writing it all down. Turns out what’s been in my head has happened to play out in my life this past week. So this will be similar to current events. It’s also coming to my attention that some if not most don’t understand my need to go public with what are private events of my life. I don’t have an exact answer for that; it’s in part due to the commitment, I’m accountable to myself and to the 70+ people that visited my blog so far, it’s also because there are many parts of my story that others may benefit from, parts that I’ve spoke out about before, parts that I know have already made a difference for others and hopefully will continue to do so, and in part, maybe most importantly because this is my opportunity to have a voice.  

I’ve had a lot of feelings over the past week: frustration, anger, annoyance, sadness, I’m not even sure anymore. And one feeling I hadn’t really felt before, the feeling of not being wanted. I sound like a sap, like a baby, but I’m over it. It’s honest, it’s how I feel. I’m stressed by a feeling of powerlessness to make a bad situation, a hard situation any better for anyone involved. I confronted my dad, who has been an alcoholic since before I was born, who has, to me, been distant and uninvolved for my whole life. Any therapist I’ve ever spoken to has been convinced and asked me countless times whether or not I had been abused by him, where did he hit me, where did he touch me? Well, he never did. It took hours to convince them that really he hadn’t. I’m not even sure if in the end they believed me. His abuse has come in a different form, in a lack of communication other than a drunken rage. I have feared him all my life. I broke a window in the basement once when I was in 5^th grade, and I sat in front of the door crying and begging my sister to protect me and calling my mom to make sure she got home before him so he couldn’t kill me. In more recent years I wanted to confront him about a beer can I had found in our living room, he was outside grilling over a fire in the backyard, I knew that if I went out there and caught him in his lie that he would probably throw hot coals on me or the grill itself, and then how would I go to work the next day with my legs all burned? I’ve feared him always, he’s never hit me, he’s never touched me, but the threat of it, the fear of it, has always been there, the rage is so unpredictable, and I have no doubts that he is capable of horrible things. I have no actual memories of him in my early childhood, I can remember pictures of him and I together, I know that he was there and at events, but I don’t have memories of him. I was very sick when I was 3 years old spent a month in the hospital, I remember a lot about it, (I’ve been cursed (or blessed) with an extremely vivid memory) like the girls that befriended me and would come eat in my room while we watched Barney, or when they took the skin biopsy from my hip, I remember our new neighbor visiting, I remember the Barney and Mr. Chicken Head dolls I received, but I don’t remember my dad being there, at all, ever. My mom tells me he was, ya know what that’s fine I’m sure he was but I can’t remember it. I do remember being there and struggling while he was dying in the MICU at North Shore, after he fell while working. I remember being terrified, seeing so many tubes, seeing the boy across from him, bandaged from head to toe, I remember the waiting room, and I remember all the times, I saw the transport aides come up in the service elevator to bring another body to the morgue. I remember giving him a sip of raspberry Snapple while he was in the four person room on bipap, he choked and went vasovagal, his eyes rolled back in his head, everything started beeping, and they laid down his bed like he was crashing, I was shuffled out of the room, in to the hallway by myself. He was okay though, but for a while I was 15 years old in the hallway by myself thinking I had killed him. He continued to get worse, needed to be intubated, needed another chest tube, needed a trach, every day was going to be his last but it never was, he got better. And despite his uninvolvedness, everyone was there to support him. My beautiful cousin Marissa who had been dying all her life and would die 6 months later because the doctors couldn’t save her, couldn’t cure her, couldn’t give her 27 year old body a second chance at life, called each and every day to check on him. The attendings and residents on the unit said that he was the miracle patient that makes all of the pain and suffering and death involved in their job worth it, because for every 99 patients that die and that they can’t save, there is 1 that lives, that they can help. That was my dad.. His accident was October 10th or 11th… the next day I had to take my PSAT. He came home December 14th, I’m pretty sure, but dates don’t matter.. He kept a beard because one of the doctors that saved him had one, he said that he was going back there dressed in a suit and looking like a new man in January to tell them thank you for saving his life, for bringing him back from death’s door. But he never made it back. He sunk himself back into his usual routine of alcoholism and depression. And he’s been there ever since. There is not anything in this world that will bring him out of it. Not me, not my mom, not my sister, not anything. We’ve tried. We’ve tried and tried, and he’s lied, and lied, and lied his way through rehab, his way through all 12 steps probably 12 times. He won’t change. And he’s killing all of us. He’s killing himself, and that’s fine, that’s his decision, but he can’t continue to drag us down with him. I confronted him, I told him how much I hated all of the things he’s done. Like the time I was the only one home when he came in puking from the barbque at our new neighbors, or like the many many times he picked me up from a friends house, from school, from anywhere drunk off his ass, or when he got arrested for a DWI and I laughed at him and asked him didn’t he think he was going to caught, and he said to me that he didn’t think he would be drinking, and then went off on how he wasted his phone call to my mother.  I told him about all of these things, I told him that I felt his behavior is unacceptable, has been unacceptable and that he hasn’t suffered any consequences, or made any effort, or apologized for anything he’s done to us. He looked through me, with dead eyes. He said he didn’t know what to say, then said I’m sorry, once. My confrontation, which was just meant to say things cannot go on like this, and I don’t know what else to do, blew up, to an even larger confrontation, that in the end I really felt had meant something, had changed something. We left it at that, with everyone, except my dad a little bit torn up. I left to drive back home to Binghamton, he asked when he could call me during the week, and I said anytime. By Saturday, I hadn’t heard from him. No phone call, no apology, no concern. He doesn’t care, or maybe he does, but he doesn’t care enough. I would give anything to not be in this forced relationship with him, to not have to go home and live next to him, I don’t think that this can be fixed and I don’t even care to try and fix it, but I never felt so unwanted before. This isn’t something that I should have to deal with. The change that I thought was coming, the difference that I made was short-lived... I have bigger and better things to do, and he will not change for anything. That is something that we all need to come to terms with. I feel that I have done that, what I haven’t come to terms with is the pain and suffering and havoc that he continues to wreak over my mother and sister and in all fairness over me as well. And also our friends, our family, and the stress that overloads in to our other relationships.

I am refusing to have daddy issues, I would like to be done with this. All anyone keeps saying is that they are sorry it is so hard. It is so hard but it doesn’t have to be. I want everyone to see that. I want my feelings to make a difference, I want for them to matter enough that we can all walk away. I want to end this before the damage becomes permanent. I want to end this knowing that even though I’m not okay now, I will be okay later.

I have bigger and better things to do, than to deal with a selfish individual, who is not willing to put his family before himself, who has manipulated, and lied to every person in his life. I have an advanced care planning project to work on, I have a 4.0 in graduate school that I would like to maintain, I have an amazing partner that I would like to celebrate, I have so many things to be proud of, to be happy about it, to rejoice in, but right now, I’m not. Last night, Ian said I miss you, we live in each other’s pockets and he is having to miss me, because of all of this, because I am drowning in all of this, when I could be doing such bigger and better things. I, right now, have too much to be happy about, too much to be in love with, too much to be proud of, to be drowning, I’ve had enough of the bullshit, I’ve had enough things happen to me to weigh me down, but I am refusing this. I will not be made to feel this way, and I will not be powerless to it. How I will do that, I’m not sure yet, but this is where I’m starting.

The Weight of the World

So what’s the plan? 

There isn’t one. 

I will write what’s on my mind, what memories are playing in my head, what I really want and need to say, whatever it may be. It will not be sugar-coated and it will be honest. That’s what I’m looking for, being honest with myself, and with everyone around me. We all have a story to share, and mine at age 21 happens to be a long one and if you can bear it, if I can bear it, I will tell it. That’s all I want to do. Maybe writing it will put it to rest, bring me some relief, or help me find something I didn’t see before. Maybe forcing myself to sit with my memories, and with my feelings will make them less scary, will make them better, will remove the negativity that I associate with much of my life, and will make them just what they are, experiences that have made me who I am. They are nothing to be ashamed of, nothing to hate, nothing to regret, nothing to stress over, nothing to lose sleep over, just experiences that have brought me to where I am now. Things that I need to come to live with, and to take for what they’re worth. 

With that, I feel at a loss for where to start… Where to begin, I’ve stated where I am after many events this past year, but that doesn’t give a whole sense of who I am, and naturally I feel that I should introduce myself. But this is a journey to do just that, to find out who I am, to find out what matters most to me, what has made me, me. While I am whole heartedly excited to do this, I also feel like issuing a warning to anyone reading this, to explain that there are a lot of, well, unpleasant, unfortunate, bad, horrible, terrible, no-good, things that I will write about it. By the end of this, I will not categorize my previous experiences as good or bad, unpleasant, or unfortunate (I find it counterproductive) and because then it would seem that my life has been a series of unfortunate events, and that just is not true. The beautiful soul that I aspire to have and to be, is built with love and hope, not with misfortune, not with circumstance. I hope it will be from how I live my life, what I do with what I’ve learned from my experiences, how I choose to carry my pain and my heavy heart. 

I think that I may be classified by some as someone who wants to fix everything, but I do not see myself that way. I do think that I see myself in other people more often than my peers, I think that I see my pain in other peoples’ faces, in the way they walk, talk, and breathe, and that I feel this overwhelming urge to help, to offer relief. I feel the weight of compassion on me, some days worse than others, when it just seems unbearable, when I try with all my might to carry the pain of the world, the pain of my friends, the pain of my family, the pain of my acquaintances, to take it all away from them, to give them all a break, if only for a day. Those days I could implode, those days I find my strength, in believing that I in some way have made a difference. It’s often those days when I could scream at every passerby at every seemingly oblivious individual for not seeing the pain, for living on the surface, for not being in the deep end where all this pain lives, where I am struggling to remain afloat. Those are the days when my roommate has a cough and is whining that she is dying and has a final and she doesn’t know how she’ll make it through the next few days, and all I want to say is, how can you complain about your cough and your exam? I got angry and I bottled it up… and I find my weakness. My weakness in my inability to understand and to see everyone’s difficulty as their own, to view the value of all types of pain. Then, I am reminded of Marissa, my so admired, so beautiful, so kind, and funny, my princess of a cousin, who was able to see past herself, past her pain, that she suffered through, a lot of the time silently, to have compassion above anything else for everyone, no matter their challenges. She had time for everyone and everything, at least that is how I felt, and how I remember her. She always asked me how I was feeling, how hard it must be with my arthritis, was I getting on okay anyway, she would tell me stories of when her knees would lock from her CF-related arthritis and that she would get the football players to carry her to and from class. No matter how bad her situation, your problem was your problem, and if that meant that you had stubbed your toe or got a parking ticket, she understood and she was there for you, even though her problem was that she was dying. I don’t know what kind of a person that is, except for selfless, and beautiful. I try and remind myself, on days when I feel the weight of the world, how I would like to react, how I would like to understand and how I can try. But I still struggle, and a lot of the times wonder how it is possible, if it is possible to study for the exam, to read the book, to have a conversation, all the while knowing and feeling so overwhelmed by the pain and suffering of others, nevermind myself.

Most of the time, I am carrying someone else’s pain, because, maybe that’s my coping mechanism, maybe I feel my pain is just too hard. Letting go, has proven difficult to me, because there hasn’t been any resolution, there hasn’t been any consequences, there hasn’t even been any discussion, there has just been pain, which has grown into anger. I had an opportunity to carry and release my own pain this weekend. To address too many things that had not previously been dealt with. Something I had been wanting to do for over 5 years, but was never able to. This release may not change anything, the fact that I confronted my alcoholic father may not and probably will not change his behavior, but the lock and key that my heart and mind have been living under and being buried under for over 5 years, feels like it has been cut off. It almost felt as if something had died, I don’t think I realized how much I had been carrying, how much weight could be lifted off by saying I was angry, and I was hurt, and that things he has done are wrong, all of them wrong. I don’t know if he heard me, but I looked him in the face and I said it, and that’s all I can do. And right now it feels that it’s all I needed to do… At the beginning of the weekend I felt that going home reminded me of how much anger I hold, my breathing changes, my voice changes, my muscles tense up, and at the end of the weekend, though it caused much upset, I feel a real release. 

I hope it sticks, I hope it means something.

My mom has told me that I can’t save everyone, when I would return home from work over the summer and talk about the different patients I had seen that day, she would tell me that I can’t take their pain away. That is true. And what I would say back is that I can hold it for them. But she knew that, and she is the same way. We can’t all carry the weight of the world, but we can hold each other up and offer support, we can find a place to meet in the middle.