It has been a tough couple of days. For some reason my pain has been completely out of control. Judy, my palliative care nurse was able to get Dr. Giannini to write for the IV Benadryl. As I've said before, the IV Benadryl helps make the dilaudid more effective and last longer. I was getting IV Benadryl with the IV antibiotics, but since I won't be getting any more IV antibiotics, I needed it to help with my pain. It took many days to try to arrange it. First, for some reason it was difficult to get the order to professional home care. They faxed it multiple times, but for some reason, the pharmacy didn't get it. Then, it was a task to get it and have it delivered. I was in such severe pain that I was crying. I couldn't sleep as I was woken up by the pain shooting through my body. Each breath is pain staking. Even the pain medication doesn't touch the pain. I worry that I'm becoming dependent and that is why it is growing less and less effective, but the pain is getting so much worse. I know that soon we will have to change to either liquid or IV medication. It frustrates and scares me.

I had another episode of bleeding from the trach. I didn't do anything for it because I know there is nothing they can do. I know that I will not bleed to death and it looks worse than it is. You never get used to coughing up blood. My cough is worse as well which proves to me that once again the IV antibiotics didn't kill whatever it is in my lungs. My sats have been low as well. I am on 10L and can't really go any higher. I was in so much pain yesterday that I couldn't go to the movies with mom as we had planned. I know it hurts her to see me in pain.

I met with the hospice team on Thursday. They would like me to meet with Dr. Steingart before stopping the infusions. They talked with my pulmonology team, who of course said that they feel that my condition is not terminal. Even though my condition continues to decline, they refuse to see it. They then called Dr. Steingart whom I haven't seen since I got back from rehab, at which point I wasn't as sick. He hadn't known about my deterioration. Obviously, he was caught off guard since last I was doing better and the trach had helped my breathing. When they asked him about life expectancy if I came off Igg, he was unable to give a fixed amount of time. I know that it's okay because Dr. Giannini is the main person managing my care and she is able to sign the paperwork. The hospice team does want to make sure we have exhausted all options of treatment. I wish that we could find something that would help and make a difference. It is my one true wish. But I don't want to keep suffering. I worry this will keep me off hospice. I don't want to be on hospice if there is hope in something else, but I can't live like this either - with every breath being agonizing. I pray to breathe easy.

Another cyster (person with cystic fibrosis) died last night. Cystic fibrosis is a genetic disease that because of a gene mutation they have no chloride ion channels in their cells. This causes their mucous to be very sticky. They have a lot of lung problems. They get a lot of infections because their mucous is so thick and sticky that they can't cough it up. The many infections damage their lungs, somewhat the same as me. It is almost inevitable at some point they will require a double lung transplant as their lungs go into lung failure. For some, they get too sick to qualify for transplant. Others, for some reason, may not be candidates. In cases such as these, they die at a young age. Hannah was 20. It makes me so sad to think of all those that have died way before their time. I think of many others with different lung diseases that cause them to die young. It's just not fair. This is a world in which I wish we had more answers, more solutions. Medicine has come a long ways over the years. What used to be open heart surgery is now done laparoscopicly. Despite the advances, still many die too young. I grieve for all the mothers and fathers, sisters and brothers, family members and friends, boyfriends and husbands, who are taken from this world too young. They are such wonderful amazing people, whose lives are cut short. How I wish for me and those like me, there were ways to prevent this and give them the opportunity everyone deserves, the opportunity to live life.

Transition to Hospice

I had my IVIg today. I have enough Igg for one more infusion, and then I either have to order more or stop the infusions. This is such a hard decision to make. My goal has always been to make it to Christmas. I was trying to hold off transitioning into hospice until after Christmas because it was very important to me to make it to Christmas and have an enjoyable holiday with my family. I have pretty much reached my goal and think that even if I were to go into hospice now, I'd still be here to enjoy Christmas. The hard part about all of this is deciding when to stop the Igg. I finished my last dose of IV antibiotics today. I have decided that this is my last dose of IV antibiotics. I won't be doing anymore antibiotics. Though this was a difficult decision to make, it is not nearly as difficult as deciding when to stop the Igg. Since September I've been fighting this infection. I have been on countless different IV antibiotics. Despite all the antibiotics, I still have the infection. Nothing seems to be killing it. The infection seems to start to get better when I start on the IV antibiotics, but somewhere in the 14 day course, the antibiotic seems to stop being effective, and the infection once again takes hold and gains the upper hand. I have just come to the point that it doesn't make sense to keep doing different IV antibiotics when they don't seem to be helping. It makes no sense to put these drugs into my body, medications that cost a lot of money, when they don't seem to be effective. There comes a point where you have to say, enough is enough. I am tired. My body is tired. I am the one that does all the medications. I don't have someone who does it for me, and as I grow weaker, as I decline and get sicker, even the simplest of tasks becomes overwhelming.

I tried to talk to Kathy again today about hospice and discuss with her that I was getting closer and closer to transitioning into hospice. She refuses to acknowledge reality. She wants to bury her head in the sand and live in denial. I know this is hard for her. I know that she has come to care deeply for me. I am not just a client/patient. I am more than that. I am like a daughter and a friend. She does not want to lose me, but denying reality is not going to help things. It won't make it different.

She looks at this as me giving up, throwing in the towel. But I am not giving up. Had I just been diagnosed and refused to even try treatment, that would be one thing, but I have done 6+ years of treatment. I have done IVIG. Most people do infusions once every 3 or 4 weeks, I do them once a week. I have given my life up to this disease. First I gave it my career in nursing, then I gave it my career in research and my Ph.D. I gave it animation and finally my tutoring. I have done the treatments,the tests, the medications. I have gone for 2nd and 3rd opinions and consults. And what have I gotten in return? She wants me to seek another opinion, but I have already done that many times. The only thing the doctors in Boston could offer me is more questions, no answers. If there really was hope that they would figure things out and find a treatment that would help me, I'd be more than happy to do it. I don't want to die. But, there are no answers. She says to me, "But they don't have a terminal diagnosis. They don't have an organism that is causing this severe infection." This is true. I could go to countless more doctors and undergo many more painful and invasive tests in hopes of having a diagnosis or coming up with a cause for my decline, but to me this is not important. It may make my treatment providers feel better. They will have answers and an explanation. They may feel less like a failure, but to me it is not worth it. The diseases and diagnoses they would be looking at are for progrssive terminal illnesses. Is it that important to have a reason why when there is no treatment? It won't change things. The result will still be the same. I will still be dying and there still won't be anything they can do to prevent it. The difference will be that I will have wasted some of the precious time I have left in doctors' offices or hospitals, undergoing painful and invasive medical procedures. For years I have gone from one specialist to another. I have heroically withstood procedure after procedure. I rarely cried or complained. I took the tests and treatments with strength, hoping that it would lead to answers, but it didn't. Now that my time is coming to an end, I dont want to waste the precious time I have doing procedures and tests. I want to spend the time I have with my family and friends, enjoying the time I do have and making memories that will last after I'm gone. It kind of reminds me of last summer when Abby got sick. The vet offered to do an X-ray and blood work and other tests to fully diagnose what was going on. When I asked how this would change her treatment protocol, I was told that it wouldn't. She'd be given the same medication. The difference would be they'd have a concrete clinical diagnosis. I chose not to have the tests done and instead just give her the medication. Why put her through those tests and be charged the extreme fee of having the tests when the treatment would remain the same. Even if I did all the testing, it wouldn't change the treatment. It may make my doctors feel better because they'll have a concrete cause of why this is happening, but it won't change anything for me. I will still be dying.

I understand that this is not a position that doctors are comfortable with. They went into medicine to save people. This is especially true because I'm so young. If I was 70 and had lived a good life, they would not have as hard a time accepting this as they do with someone my age who has not really even been given a chance to live. They feel powerless, and they feel like failures. But I don't view them as such. I am very grateful because they have given me more time than I would've had otherwise. Though the trach wasn't a cure, it gave me more time. Even an extra couple of months is something to be extremely grateful for, but it is important to realize that medicine doesn't have all the answers. It can't cure everything. There are times that things happen that we don't understand why. It may seem unfair. But I hold no anger at the circumstances. I am very grateful to have been given what I have. Medicine doesn't have all the answers and it can't fix everything. There is a time when you have to give it up to the Lord, and trust in Him. We like to think that we have control over all things. In truth, we have very little control over things.

I have found that how a person responds to me and the fact that I'm dying largely depends on how comfortable they are themselves with the topic of death. Death is a natural part of life. We are all dying. From the moment we take our first breath, we have already begun to work towards taking our last. Some of us are dying sooner than others, but the fact remains, we are all dying. It is impossible to escape this. Death is a natural part of life. While many view it as the end, in reality, it is just the beginning. I embrace this time of my life. I have struggled and suffered for many years now. My body has grown weak and no longer has the ability to fight. Instead, it embraces death as a freedom from the pain and suffering I have endured.

Right now life is such a struggle. Every breath hurts. The purpose of the trach was to increase my quality of life. Though I am grateful to have had this time, my time here on this earth is coming to a close. Every person has their line of things they are willing to tolerate, and the point at which they say enough is enough. I have reached that point. I am tired. I am weak. My body is weary and needs a rest. It is tired of fighting to live every day, every moment. I have fought so hard for many years, but now it is my time for peace, time for my suffering to come to an end. I do not have a quality of life. Kathy often says that she would never be able to do the things I do every day. If she would not want this quality of life herself, then how can she expect it for me? Do I not deserve to be free of suffering? I am not giving up. I have done treatment and therapy for many years, but what is the point if it has no benefit and only increases your sufferring? Don't I deserve to be at peace? She asked what terminal diagnosis I have. I don't have something concrete such as cancer. But I know that I am dying. The infusions are no longer working. All the medications I take and therapies I do seem pointless. If they were working, I wouldn't be in this position, and if they truly aren't working, what is the point on continuing them? There comes a point when you have to reach acceptance and give it up to the Lord. I am yours God. Your will be done. I know that I am powerless. I have no control over my life and death. If I am meant to die, nothing on this earth will keep me here. In the same way, if it is not my time, I will not go. Whether I go into hospice or not, will not matter. Going into hospice won't make or prevent me from dying. It will, however, determine my comfort level through my final journey.

The hardest thing about all of this is giving up the Igg. Logically, I know that it is no longer working. If it was, I would not be as sick as I am, but actually stopping the Igg is a difficult step. I don't want to die. If there was another option, if I were to get better, if there was a treatment, I'd be most happy. Since being diagnosed, I have fought for my Igg. To me, Igg is synonymous with life. No Igg is equal to sickness and death. Though I know it isn't working and doing no good, giving up the Igg is a true step of accepting that I will die. I know that when I stop the Igg I will get sicker and my pain will get worse. I am terrified of sufferring, of feeling like I am suffocating to death and not be able to do anything about that. This is what I am afraid of. I do not know what scares me the most, the idea of dying, or the idea of living indefinitely like this. I don't understand how people can say they wouldn't want to live as I do but then judge me and expect md to continue to suffer in this way. I have no quality of life. My body is dying. It is shutting down. It scares me to see how I have deteriorated. I can no longer shower myself. I am too weak. When I came home from rehab my weakness was due to muscles being weak. This is no longer the problem. The problem is not something that can be treated with physical therapy. It is a result of my body shutting down. My lungs are bleeding and falling apart. There is no way to treat this or fix it. Each breath is immensely painful. I can no longer do things for myself. I need help showering and dressing. I am no longer independent. I can't drive. I can't just get up and go somewhere whenever I want. I am reliant on others to get out of the house. I can no loner walk. I can't tutor. I tire so easily and after being awake for more than 2 hours, I am so tired that I must sleep. I fall asleep talking in mid-sentence. Technically I need to be vented, but I really don't want to go that route. I grow weary at having to do everything, care for everything myself. It is a daunting task. I ache. I hurt. I pray for relief. Hospice will give this to me. This is not easy. No person my age should have to be making these decisions. People make this process even harder by judging me. How I wish they could accept me and support me in whatever I decide is right for me.

Decorating the Christmas Tree

We got a Christmas tree and decorated it today. It was so special. It would've been Poppy's birthday today. I can't believe he's been gone over a year. I miss him so much, as if it were only yesterday. I know that he is in heaven and watching over me. I know he is helping me through this process and guiding me. I also know that I am surrounded by him and other angels that love me.

Christmas has always been my favorite time of year. I love Christmas. It's such a magical time of year. I always think of it as a time of hope, a time where miracles do happen. I love everything about Christmas. I love Christmas trees and the scent that fills the air. Some people have said real trees aren't good for people with immune disorders or breathing problems. Honestly, it doesn't matter to me if we should or shouldn't have them. Many people live their life with caution. They rarely go out and if they do, they wear a mask. I just can't live that way. I refuse to live my life that way. I would rather have one good year of truly living than many years of staying inside. Yes, I'd probably be more healthy, but what is the point if you can't enjoy life?

I have always been a huge Christmas person. I LOVE Christmas trees. I love the scent of the pine needles and the prick of the sap on your fingers as you hang ornaments on the branches. I'd have a Christmas tree all year around if I could. I'd decorate it for each of the holidays. Only thing is real trees don't do so well in the heat. I remember how much Aunt Bren loved Christmas and Christmas trees. She would have huge Christmas trees. We would go and decorate them. She got the Christmas tree the day after Thanksgiving and it stayed up until every needle had fallen and it truly had to be gotten rid of, but usually she could get it to last until Easter. She'd decorate it with hearts for Valentines Day and eggs for Easter. She had a gazillion ornaments. It was very special to be able to decorate the tree on Poppy's birthday. Grammy loves the tree and it is so good to see her smile.

Usually we would celebrate Christmas at mom's. I would sleep over on Christmas Eve after we had all gone to the midnight service. We would awake early (6:30am) and after mom had turned on all the lights and checked to see if Santa came we would go down the stairs together. Though we are all older and most people our age don't get up at the crack of dawn to open presents, but I never lost my childhood love of Christmas. I still believe in Santa Clause. No, not the person, but the spirit of Christmas. It is this childish belief that makes all things possible. Because of my mobility problems and my need to use a wheelchair to get around, we can't celebrate at mom's. Even if I could get in the house (there are only 3 steps to get into the house), I wouldn't be able to get down or up the flight of stairs necessary. This is why we have decided that this year well celebrate at Grammy's. Grammy and I will sleep at her place, and mom, Sher, and the boys will come over first thing once they wake up. Grammy's house is handicap accessible.

I think about Christmases past. One year, we made code names for each of us. We got out the walkie talkies and spoke to each other from different rooms to make sure we were all awake. We have always had rules that we couldn't wake mom up before 6:3. We would talk to each other, anxiously awaiting the time at which we could wake mom to see if Santa came. When we were all awake, we sang Christmas carols at the top of our lungs to wake mom up. It is the spirit of Christmas that is so wonderful. It is the one time of year when people are kind and giving. People donate to charity and to help those in need. It is a time of hope and celebration. When I was a kid it was all about presents, but as I've gotten older it has been about giving gifts and seeing the joy it brings to others.

This year it is bittersweet. I know that this is probably my last Christmas. My goal has always been to make it through Christmas. I have been trying to hang in there and not transition into hospice until after Christmas. This has always been my goal because Christmas is so important to me. It hurts me so much to think that next year I probably won't be here to celebrate with my family. It makes this one so special, but also very sad. I love my family so much and worry that next year they won't celebrate the same way. It crushes me to think I won't be here. How I wish I could control this, to somehow get more time. I am trying to make this year especially special so that my family has special memories for when I'm no longer here.

Blood Transfusion

I finally got the blood transfusion - one unit. It was actually interesting because I didn't know my blood type. I've had blood transfusions before, but it's been awhile and I didn't remember my blood type. Mom is O+ and we thought Gary, my bio dad, was A+. We always assumed that both Sher and I were A+ as well because of the problems mom had when she had Sher. When my sister was born, she had a lot of problems right after birth. All of us were c-sections. I was the first born and since my mom had to have a c-section with me because she couldn't deliver me and being the first born I was the smallest, mom had to have c-sections with the others as well. The doctor assumed that there was no way she would be able to deliver vaginally because subsequent babies only get bigger. Anyway, I was delivered without incident, but when Sher was born she immediately had problems with breathing and other things. She was whisked away and taken to the nursery so the doctors could work on her. It was always assumed this was due to an ABO incompatibility. If the blood type of the baby differs from the mother, it can cause serious problems when the baby is born. This isn't a problem with the first child, but occurs with any subsequent birth. During birth of the first child there is some mixing of the blood. If the blood type of the first child is different from that of the mother, the mother develops antibodies to it. If any of the subsequent births are also different from the mother, the antibodies the mother made to the 1st child's blood type attacks the baby's, causing problems for the baby being born. This is something they check for during pregnancy. If it is caught during the pregnancy, the mother takes medication to prevent this reaction. Usually this reaction only occurs with RH factor differences (the mother is positive and the child is negative). We assumed that because of this reaction both Sherryl and I were A like Gary, however, it never made complete sense because we thought that both mom and Gary were positive, which wouldn't have caused the reaction Sher had. Now it makes sense. If I'm A-, then it makes sense if Sher is also A- she would've had problems at birth. This also means that when I need blood Sher could donate to me, but mom can't.

The blood transfusion went fine. It only took ~3 hours. I am quite disappointed. I really had high hopes that getting the blood transfusion would make a huge difference. I had hopes that it would bring color to my cheeks and help with the tiredness. The last time I needed a transfusion was when I was having problems with my kidneys and had a lot of bleeding. Immediately I felt a difference. I remember my cheeks got flush, nice and rosy, and I felt warm. I also felt like I had more energy. Though I knew the blood transfusion wasn't a cure, I had hopes that it would alleviate some of the symptoms I've been struggling with - extreme exhaustion, shortness of breath, and give my skin some color. I'm whiter than Casper. My skin almost looks translucent with huge dark circles under my eyes. Though my counts were only borderline, the hope was the transfusion would alleviate the symptoms. Unfortunately that didn't seem to happen. My skin doesn't have any more color than it did before and I'm just as tired as always. It's a huge disappointment to realize that these symptoms are due to the progression of the disease and a result of my body shutting down, not just because of anemia.

The Dream

I have begun to have these dreams. It is as if I am stuck between worlds. I am not here in the land of the living, but nor do I belong in the land of the dead. I am somewhere in-between. The other night, I had this very vivid dream. I was in the wold made of two creatures. The set of creatures were like trees. They came out and existed in the sunlight. They played and had fun. Went from one place to another. But as soon as it began to get dark, they went and hid inside for they were not night children.

The night children only came out in the dark. They had these little light sources. They were irridescent and would light up with these powerful, white lights. It was kind of like the glow of a firefly. A person could be only one or the other. The day children didn't come out at night, they were only visible at day. The night children only came out at night. They were not visible at daytime. If you were a day child and caught out at night, you were sent back because you didn't belong there. I was out at night, when I was supposed to be a day child and roaming around at night. I kept trying to pretend I was a night child, tried to go along in-between the other night children and hide so I wouldn't be detected and sent back. Every time I tried to pretend to be a night child, I would be detected. They would detect me right away and put their beam on me to send me back. But each time I was sent back, I was never really sent back. True day children wouldn't be viusible at all, and if they were, they would be detected immediately and sent back automatically. They had no control among the other night children. I would again be detected, and again hide. Even though I was detected, I was never fully sent back. I'd begin to head back to the area of the day children but instead of being sent back, I'd begin to hide again among the other night children. I would again be detected, and again hide. It was a process and each time I became more and more like a night chcild. I had an irridescent light, but it didn't shine as brightly as a true night chld. It was as if it were muted or dimmer. Because of this irridesence I wasn't a day chld. It was the iniridesecne that allowed me to hide amont the night chldren. Had I been a true day child, I wouldn't have any irridenscence and wouldn't be visible at all at night. So I was neither a day child, nor a night child. I was in between. I desparately wanted to be a night chld and go undetected, but I wasn't. But I wasn't just a day child because I was able to hide to some extent.

I feel to some extent this explains being in between worlds. I am no longer in the land of the living. My life as a person has stopped. I see all those around me going on with life, but I have stopped. Yet, I have not yet moved on to be a full spirit of heaven. I am neither here, nor there, but somewhere in-between. I often wake exhausted as if during the night, I have worked so very hard preparing for this jouney. I do not know what I do at night, but I do know it is hard work preparing myself for my final journey.

My Purpose in Life

Lately I have been filled with unbelievable love. Through this disease, I have lost many friends; however, though I have lost many people whom I thought were "friends", I have also gained many that I didn't know were friends. I have met some of the most amazing and courageous people. Some I have never persoanlly met, and we only know each other through the chats and postings on FB. Yet, these people have become to be just as important as my personal friends. I am truly blessed. At this difficult time, they have each reached out and made sure I knew how important I was and how blessed I was to have them in my life.

Gorwing up, my desired future occupation often changed; however, the one thing that never changed was my life goal. My one true life goal was to leave this world a better place than when I came into it. I wanted to have a positive influence on people. While I always imagined that I'd do this by doing something significant such as writing a book, discovering the cure for cancer through my own research, or becoming a motivational speaker, something that truly told my story, inner perseverance, and strength.
No one imagines that they will die before they even get to live. But for me, that is the case. I have not yet gotten to do any of the things I had imagined. Yet, I see all those affeted by my impending death and am shocked that I have had such a profound affect on so many. It amazes me. I pray that some day my complete story, through journal entries and other things, will be told. In some ways, this makes things more difficult because I realize the effect that I have had on others, the lives I have touched, and what it will mean when I am no longer here.

Jess went to Elms the other day to inform some of the faculty and staff of what was going on and that I was dying. It has been avazing, the responses I have received. but then I knew I had an impact on Elms. It saddens me greatly that while others in my graduation class are getting jobs, getting married, having children, ect., but I am doing none of these activites. I am dying. I have to leave this world before I really get a chance to make my mark. Yet I know that in my own way, I have left my mark, and that I won't be forgotten. The love that has come through from professors and other members of the Elms community as they reach out to share their love and support is amazing. Perhaps if I hadn't been who I was, and so instrumental in the community, my death would not be such a loss. But while it hurts others, in some ways, I am happy because it means I was important. Elms was my first true home. It was a place where I was valued for being me - Melissa Hauser. It was where I achieved my goal of going to college and becoming somebody, rather that the statistic that was expected of me. I did break through the system. I did succeed, and I didn't just survive. I thrived. I made and left my mark. It was at Elms that I became a person, a person I was proud of. Someone who was looked up to by others - a leader and a mentor. I was a role model in the classroom, and in the community as a whole. This is expressed through the numerous emails and well wishes that were expressed to me over the news they had received about my illness. There was a time in my life that I hated myself. I felt worth less than a peice of scum. Today, I am prouod at what I have achieved. I have risen above all that. Yet, it was all that, that made me who I am today. One of the hard things is the shock that some experience at this news. Throughout the time that they have known me, they have known me as a fighter, someone who has alrady overcome such odds, and in their eyes, this is just another road block. It is hard for them to realize that there are things tha cannot be overcome.

Angels

Part of palliative care is a reiki program. It is part of the volunteer program. Volunteers give clients in palliative care and hospice reiki to calm them and make their passing more peaceful. Though I had met with Lisa over 2 weeks ago I had not yet heard about seeing a volunteer or receiving reiki. I called on Tuesday, before my surgery, inquiring as to what had happened  to the reiki. In preparation for my surgery. Lisa sent someone out. As Laura walked into my room, she said, “Do you know you are surrounded by angels? You have lots and lots of angels surrounding you and protecting you. Before that moment I had not been aware of their presence. My brain had not yet been tuned into knowing that they were there. But in that moment I could see them, feel them, hear them, knew they were there. Now I wonder how it is that I did not always sense them. How could I possibly not see them. There is Poppy, Great grandma, Great grandpa, whom I’ve never met, Aunt Bren, Grandma Hauser, and a little boy and girl. I do not know the little boy and girl, but they are young children with curly blond hair . The little boys hair with a darker brown tint than the girls. The girl with nearly sheer white hair. Poppy is not old, but a young man. He is slightly older than pictures of him getting married with grandma. I would say in his early 30’s, though in heaven there are no ages. They choose a body for me because I’m still a form. Great grandma and great grandpa are also much younger (similarly in early 30’2) both with full heads of colorful hair. And I feel them surrounding me. Protecting me. I feel their wings against my cheek. Like fatherly light touches – butterfly kisses. I feel the softness and comfort and protection. When I close my eyes I see them waiting for me, patiently waiting for me to be ready and finish what I need to. As I drifted off to sleep during surgery they were all in the OR waiting for me, waiting for me to come and play, to fly with them. Oh what glory. I did not have my wings yet. But to fly through the air and feel the glory, the warmth of the sun as I bask in its sunshine. How I cannot wait to close my eyes. To feel them close to me. Close enough to know they are waiting for me, to welcome me into their arms when I am ready. In the meantime, they walk with me, hand in hand, until I’m ready.

Heaven is for Real

I am not afraid of dying. I know that I am going to heaven and that that is great. I know that in heaven there is a peace like nothing here on Earth. Earth is Earth. It is but a rudimental piece of heaven and God’s kingdom. I will be met with such glory that I have earned. I know that this is my reason, and my task here on Earth is all but finished. We are all souls – some old, some young, some middle-aged. I have often been told I am a very old soul, and I know this to be true. I will not be returning after this trip. My time here is done. My work here finished. And glory awaits me. Some are only beginning. I know that there are others, those that I love dearly, awaiting my return in heaven.

4 years ago, I had a near death experience. I was living in Boston at the time, studying at UMass Boston, living in Quincy. My doctors were all at Brigham and Womens. I had a severe asthma attack and attempted to get across the city to the Brighams where my doctors were. I got in a cab and off I went. I was nearly half way when the cab driver looked in his rearview mirror, glanced up at me, and pulled over to call 911. I was taken to the nearest hospital, and I was intubated upon arrival. I do not know what happened. I had been intubated many times before and never had the reaction I did that day. I found myself floating up into this giant, vast, dark space. I as pitch black. Yet I wasn’t alone. I had left my human body behind in its primitive form. I did not need it. It would only hinder me further. I was but a ball of energy. A dazzling white luminescent ball of energy. As bright and as brilliant as a newborn star. All around me were other energies, souls. Like me they traveled on, racing at the speed of light, faster and faster. Each energy, soul was different, unique. They varied by size, shape, brightness, luminescence. Each very individual and unique. We were all traveling toward this very big orb or ball of energy. It was brilliant. A gazillion times brighter than any one of us. It was all of us put together and then some. As we get closer, we traveled faster and faster. No one “spoke” but we communicated. We shared ideas, thoughts, feelings. It reminds me of the images of the universe being born in planetarium videos.

All of a sudden rather than getting closer, I was getting further and further away from the large orb of energy. It was not my time. I was told over and over. It was not my time. My time here was not yet completed, my work not yet finished. As much as I struggled, I kept bing pushed back further and further. I had felt such peace there. It was true nirvana. I could not understand how I could get so close to something so amazing and wonderful and yet not get there. Oh how I grieved for having to return, but my job was not completed. Before this, I had been utterly terrified of dying. After, I knew that everything would be okay. My biggest worry had been my family and in time I knew they would be okay. That God would take care of it all and I had nothing to worry.

Support

For the most part, people have been supportive. A few, however, have not. One such person is one of my close friends, John. Through all of this, I am trying to be compassionate and sensitive to the needs of others. My mom and other people have told me that this is not necessary, that the only person I have to worry about and take care of is myself. But this is not my nature. I am a protector and I take care of others. It’s what I do. It’s who I am. When I tell people, I try to do so as gently and as easily as possible. I know it hurts. I know they’re scared and don’t want me to die, but the fact of the matter is that I am dying and no one can stop this. No one has control over it. Right now, I need people to be there for me and be supportive of me. I need them to put aside their feelings and support mine.

This especially goes for John. We are lung twins. We were introduced by Alysse, who may not do or understand a lot, but we can owe our friendship to her. When she told me her friend, like me, had cvid, I didn’t believe it. CVID is so rare. It seemed highly doubtful that she had a friend in the area who also had CVID, got infusions, saw the same doctors, and had lung issues. It was nearly too good to be true; but it was true, and from there, our friendship grew.

He was the only one that got it when I talked about how much it sucked to be in my 20’s and dealing with this. Like me, he wore a high liter flow of oxygen. He knew what it was like to have to gauge the distance you could travel by how much o2 you had. If I made plans with someone (suppose we went to a movie), and then they wanted to go out to lunch after, but the lunch was not part of the original plans, I couldn’t go because I hadn’t factored that into my o2 usage. We talked about what it was like to be young and unable to work, or go to school. How much it sucked to be o2 dependent. We talked of our hopes of new lungs and running, riding bikes, just breathing easy. He urged me to go to see his doctor at Mass General, head of lung transplant.

Though John has lung issues that present themselves in a similar way as mind do, they are due to a different cause. He has been going through the process of trying to get on the transplant list for new lungs for almost a year. He has had numerous tests, but unfortunately due to the complex nature of the cvid and his lung problems, it is taking them awhile to list him. Each time it seems as if they will tell him yes, and list him, it is postponed, and he is forced to undergo yet another test. This has been very trying for him physically and emotionally. While I was in rehab for my trach, he was in rehab in Boston to recover from getting pneumonia, which he got as a result of a lung biopsy, one of the tests necessary to be put on the transplant list. I worried about telling him about the DNR because I knew it would hit him hard. I am one of the closest friends he has. I get it where others don’t. Most people with cvid don’t have the extent of lung damage that we do. Most people do well with Igg and get few infections after that. But this wasn’t the case for us. Though our lung issues differed greatly – his were a result of venous malformations and mine unknown origin, we both know what it is like to struggle so severely. He hated to see the little support I got from my family, or the neglect I got from my doctors. He wished for me to go to Baystate and Mass General where there are better doctors. It was only when it came to me needing a trach did his friendship falter. He wanted me to get another opinion, go to Mass General, not get the trach. But I already knew that the doctors at Mass General didn’t have any answers. They had specifically looked at me and told me they couldn’t find the reason, they didn’t know why my lungs were so bad. I was not a candidate for transplant. My body was too weak; it would never survive. No, the doctors at Mass General probably would not have put in a trach, but they wouldn’t have had answers other than to say we don’t know why you are as sick as you are. They probably would’ve thrown psycho babble, mumbo jumbo and not solved a thing. At least the trach gave me a chance. I knew that telling him this would hit too close to home because he knows that if he isn’t listed he too, will be facing this process. Without him saying it, I know it scares him. But I did not expect the fierceness of his rejection.

Everyone deals with death and grieving differently. When I told John, he was angry. Though I understand he wasn’t necessarily angry at me, his anger seemed directed at me. As if, how could I allow this to happen. You don’t need to do this. You don’t need to give up” he said. “You need to get to a better hospital in Boston and fight for your life. Get PT and push yourself. Be in pain and let the pain remind you that you are alive” He says, “I know it’s lonely. I know it’s hard. I know it sucks. But life’s a bitch, get a helmet.” “Get a psychiatrist. You have every right to feel sad and want to quit, but you are much stronger than that. You don’t need to do this.” And no words cut me more deeply. Because this isn’t’ a choice. I am not giving up. Honestly, I don’t know anyone who has fought harder against this disease. All those years of pain. I saw specialist after specialist. Went from Boston to New York City. No one had answers. No one had suggestions. All they had were more questions. I fought when I had no one by my side. I got myself to specialists. Made appointments for myself. Advocated for myself. It was lonely all those times in hospitals by myself. Times that my family wasn’t supportive. I had no friends. And though there were moments, I wanted to give up. I didn’t. I fought. I fought and I fought and I fought. I held my head up high and said nothing will stop me. I’m a survivor and I will prevail. This is not depression. I’ve been depressed. Depressed is when the world is black and you want to curl up in a ball In the corner of the room and sleep until it is over. I do not wish to avoid this, but rather want to embrace it, head on. I am sad, yes, but not depressed. I am sad at the people I must say good-bye to. Sad at the people I must leave behind. Things are not bleak and dreary as the world is often described when you are depressed, but bright and vibrant. It is so many colors come together in beauty. I am not choosing this but it is inevitable. It is my moment.

When I talked to Kathy about his, she said, “But they don’t’ have a diagnosis yet.” “They don’t have an organism” Sometimes in medicine, they don’t know “why”. Medicine doesn’t have all the answers. It cannot fix all things. If it is my time to go, I will go. I am not giving up. I am still doing therapy, taking treatments, doing my meds. But it is a losing fight. There is nothing I can do but put it in God’s hands and let His will to be done. It angers me to think someone could say I’m giving up or that I haven’t fought hard enough. Name me one person that has fought harder.

There comes a point at which it’s about quality not just quantity. I didn’t have a quality of life. My life sucks. My lungs aren’t getting better. Without a transplant or something of that nature, I never will have a quality of life. Even if my lungs didn’t get worse; even if they only remained the same, I still would never run, ride a bike, or even walk to the end of the driveway. I would never go anywhere without oxygen & just breathe easy. I do not remember what it is like not to struggle for every single breath, a time when breathing was an unconscious thing I did without thinking about it. I have a trach. I am alive, but I don’t have a quality of life. I have never turned in fear or cowered in the face of pain. I have faced every aspect of this disease head on with dignity. I have held my head up proud and will continue to do so. I have done more than nearly anyone else. John and I discussed it. We discussed that should someone come to us and say we needed a trach, we would say no, and let God’s will be done. But in the end, I didn’t do that. I agreed because I wasn’t ready. I needed more time, and I held the hope that I would get better. I didn’t cower in pain and fear when I went to rehab. I stood there boldly and strong facing the pain and I relearned how to walk, how to talk, how to eat, and how to breathe. I relearned practically everything I had learned through childhood as the trach changed my entire life. Not once did I give up. Not once did I say I can’t or it’s too much. I had my moments, but mostly, I faced each day with determination to get my life back, and to have it on my terms not my diseases. But I can not beat this one. It is not my family holding me back from seeing other doctors and specialists. If I truly wanted to get there, I would. I have gotten places myself many times before without any support. No one can stand in my way if I determine I want something and it’s what is right for me. But everyone has a life and this is my life. It has come that I need to be vented. The doctors haven’t said this, but I know it to be true. I don’t want that. I know I am dying. I refuse to spend the time I have going from doctor to doctor or procedure to procedure to be poked, prodded, and endure pain with no increase in quality of life. No answers, no better options. This is about ME and MY quality of life. I have already been given more time than I was supposed to have. Had it not been for the trach, I would be dead by now. Maybe for some that would be easier. Maybe the trach gave them a false sense of security that I was going to beat this, defy the odds, get better. But we knew it wasn’t a cure. It was a chance. It was a fight of time. I was not ready. It has given me time with my family and friends. Time is so precious. It is something that once lost can’t be gotten back. I did not choose this; however, through this all, I have held my head up high and I will through this too. This is not a choice. I am making, except I am choosing to say no to treatment. However, this treatment won’t cure me, but it will only prolong my suffering. To be realistic, if it is not this infection, it will be the next, or maybe the one after that. But the truth is I am dying and nothing can be done to prevent it. I will embrace death as I have embraced life – head on with my head held up high.

DNR

I signed the DNR today. Probably one of the hardest things I've ever had to do, but it needed to be done. With as sick as I've been, I've been so afraid I'd end up in the hospital and either be too sick to talk or have the doctor not honor my wishes. I wasn't sure if I ended up in the ER and said I wanted a DNR if they'd listen.

I've had this infection for 6 weeks now. It's not getting better. If anything my cough is worse. I'm now bringing up blood in the trach. I don't know if it's because my lungs are irritated from all the coughing or if there is a granuloma or something, but I'm back to bleeding like I did at first. I cough, and it's like Freddy Crooger - blood everywhere. Disgusting. They are trying yet another antibiotic - zyvox. They don't really have any meds stronger than this. If this doesn't work, I don't know if they have anything else. If they do, I'm not sure I want it. We are changing the trach on Thursday. The thinking is that maybe if the infection has colonized in the trach, changing it will get rid of it. My breathing has been so bad. My lungs hurt so badly; the pain is immense. I've been waking up dizzy and with a massive migraine the past several nights. I know I'm not getting enough o2 while I sleep. Before the trach, I was using bipap at night. We knew I'd probably need to be vented while I slept at some point, though I never thought it'd be this soon. Of course, then I have to decide if this is what I want. I've realized in the past year or so, the reason I go to the hospital is that I get so I'm struggling so much that I start to get tired. The effort of breathing becomes too much. It hurts so much from breathing and struggling that I go to the hospital to get relief. That is the pain I am afraid of. The pain of struggling to breathe. To be suffocating and be terrified and not able to do anything about it, but if the pain is taken care of and out of the picture, then going to the hospital becomes unnecessary. I am trying so hard to stay out of the hospital. I have goals. I want to go to Disney. I want to make it to Christmas. I don't see the point in going to the hospital. They can do the IV antibiotics at home. If they put me in the hospital, I want them to guarantee, I'll come out. The only reason for going to the hospital is so they can vent me, but if I were to go on a vent, can they guarantee I'll come off? Now I know they can't guarantee this 100% with anyone, but baring something unexpected happening, they do so with at least a 97% certainly they'll leave. At this point, I don't know if they can even give me a 50% certainty.

The hardest thing about the DNR is I didn't want it to seem like I was giving up. I'm not. Not by any means. But if dying is the goal, the end result, as it is with hospice, then what would be the point of coming back. If it came to the point that I need CPR, I am already clinically dead. I don't want to be brought back. In addition, for most people, CPR has it's consequences. They may bring you back, but for what? You are not the same. Your quality of life is not the same. If they could bring me back and I would be better than I am today, then it would be okay. But even if they were to bring me back to how I am today, I don't want it. To me, this isn't a quality of life and at some point It does have to be a quality not quantity. Right now I cannot live life and enjoy it. I am grateful for the trach and the time it has given me with my family and friends, but it isn't a quality of life. I could not imagine living like this for 5-10 years. The DNR was a difficult decision, but the right one. Now that it is done I'm much more at peace.

The Love of a Sister

Some days I think about this and how utterly unfair it is. It seems that lately all I do is cry. The social worker from the VNA made an interesting statement today. She said that I am grieving. this is so true. I think in many ways this is harder than saying good-bye to a loved one that is dying, or has died. I am not saying good-bye to one person, but to everyone I know. I am saying good-bye to all the people that have been in my life.

My goal in life has always been to leave this world a slightly better place than when I came into it. I have not done even a fraction of the thing I always dreamed of. I guess I always thought there would be time. Though I never got to do many of the things I thought I would, I can't deny that I haven't influenced people. I know so many people that care. It just tears me apart. I think about certain things, things with my brothers and sister. Dinner with them and how we all sit and laugh. We tease each other and joke. It hurts me to think that some day, they will be together, but I won't be there. Every time we're together, I wonder, in 6 months will I still be here to do this? A year? I know their life will go on. I know it will continue because that's what life does, it goes on. But it will go on without me. I won't be there to join in the jokes. It hurts so much to leave them, but I haven't really been given a choice. All my life I've protected them and been there for them. But I can't make this better. I can't make it hurt less. I can't stop it. I can't protect them. This is going to happen whether I want it to or not, and that hurts. They are so young, all so young. I shouldn't be the one that has to go. I think how I won't get to see them grow up, get married, have kids. I won't get to see Brenndan graduate. It's like I'm checking out at the middle of the story where I won't know how it ends. It's not fair.

Final Gifts

In some ways, I think it is very special to be allowed to walk this journey. When a child is born, they are not conceived and then immediately born. They have nine months to prepare. They grow and get ready for their journey into this world. Being born is hard work. Similarly, dying is also a process, a journey. Some people may die instantly in an accident, but this is not the norm. For most, dying takes time to prepare; it is a lot of work. I feel that is what I am doing now. I am getting ready for my trip. I am training and preparing myself to leave this world and enter another. When I sleep, I am not just sleeping; I am preparing. There are things I need to do so that I am ready. Truly, this is hard work. I have invited others to share in this journey with me. It is a gift that I am offering. They can either take it or leave it. While they may have a choice as to whether to travel this journey with me, I do not.

Today mom told Sher and Brenndan about what was going on and that I am now in palliative care, and what that all means. This becomes more real every day. I have been trying so hard to make this easier for my friends and family. I feel like I need to/want to protect them, protect them from the harshness of all of this. It is never going to be easy, but I want it to be as easy as possible because though it may make it harder for me at first, I'm the one that gets to go. I'm the one that will be in a better place, free of pain. It has been so hard. I have struggled to breathe for so long that I don't even remember what it is like to breathe easy. I have carried oxygen so long that I don't know what it is like to go without. Yet in the near future I will be free - free of the confines of this body and the limitations it presents. My pain will be ending, but theirs will just have begun.

When I think of not being here, it makes me sad. The palliative case worker that came today mentioned that I am grieving. I hadn't thought like that. I acknowledge that those around me are grieving, but you don't really consider that the person dying also must grieve. Sometimes the loss I feel hurts so much, to know that I will probably not see any of my siblings get married and have families. I will not know my nieces and nephews. I may not see Brenndan graduate from high school or college. I won't get to see what remarkable men they will grow up to be. I see them now, and I am so proud of them. I am so proud of my sister and what she has become. They are all so young, especially Brenndan. It isn't fair. He's only 15. He shouldn't have to deal with his sister dying. He is only a baby; so young. He has never really gotten to know me not being sick. For all he remembers, I was sick. I wasn't able to be there as much as I wanted when he was young. We always thought there would be more time. And now we're out of time. This just shouldn't be happening. He should not be having to face this so young. He lost Poppy and now he'll lose me. The thing that frustrates me the most is that there isn't anything I can do about it. I can't stop it from happening. I can't make it better. I can only be here now and make memories with him now. It's just so unfair. Each of them are so good. They don't deserve this. My mom, she doesn't either. She's such a good mom. She isn't perfect. She's made mistakes. But she's been there for the important things. She's done the best she could, and that was a really good job. No parent should have to bury their child. All of this just breaks my heart. So I guess the hospice worker has it right. I am grieving. I am grieving the loss of those I love and the loss they will experience. I feel anger that I can't change things, that I can't stop this from happening or stop the hurt they will feel. I can't make ti better.

De Nile.. Not just a river in Egypt

Some days, I think one of the hardest things about this is other people's denial. I know that this is hard for those that care about me. No one wants to lose someone close, that they love, especially when that person is so young and hypothetically should have the rest of their life left. But this is happening. Being in denial doesn't help, and isn't going to change anything. They don't want to face reality because it hurts. They desperately want to believe that I'll get better. I understand this, but not wanting it not to be true, doesn't change anything.

There was a bit of a scare Thursday night. We lost power, causing the oxygen to turn off. When this happens, it must be reset for it to turn on and work again. Thankfully Prakhar woke up and noticed it wasn't running. He went downstairs and woke dad up. Although neither of them could figure it out, dad had the idea to wake me so that I could fix it. When we talked about it, dad told me that he was afraid to wake me because he was scared that I would already be dead when he went to touch me to wake me up. He was so relieved when I awoke. Of course, I didn't really think anything of it or the effect it had because to me, it wasn't a big deal. It was the middle of the night, and I was asleep. My o2 sats did drop, though I don't think I was long without it; however, I didn't really consider that had I not received oxygen for an extended period, I could die.

I don't ever really think about the effect this has on dad, me being so reliant on oxygen to survive, that is. Most of the time he seems clueless and doesn't get it. Often it frustrates me and makes me angry. When I had the trach put in, he visited twice, and he never called to see if I was okay. This infuriated me. Finally, I came to the conclusion that he just couldn't acknowledge it because then it would be real, and he couldn't handle that. He needed to be in denial. Today he talked to me about advertising for tutoring to get more clients. It's as if he doesn't get how sick I am, or that I am getting sicker. I couldn't possibly take on more students in my current state. I haven't told him about palliative care and have no idea how to do so. I know that at first he won't understand it. He'll probably deny it and pretend that nothing is wrong, but at the same time, I can't not tell him. He needs to know. I especially fear his reaction. I know how upset he was before the trach, and the idea that I would become an invalid. He doesn't want to take care of me. Not that he takes care of me, because he doesn't provide anything for my care. Yet, that is exactly what I have become, an invalid, and I fear he will insist on me finding some other place to live.

Kathy is another person in deep denial. I told her today that I had been placed in palliative care and discussed the future, or at least tried to, but she is insistent that I won't deteriorate, that I will get better. She doesn't want me using the wheelchair because she doesn't want me to use it as a crutch and get used to using the wheelchair instead of walking. She wants me up and walking, which is fine and understandable, but right now I can't get around without the wheelchair. I can walk short distances with the walker, but tire easily and get short of breath. She is of the belief that if I just try hard enough, I'll get better. I just have to be dedicated, put in the hard work, and exercise. But dedication is not going to change things. I understand that she wants to see me get better. She cares for me. I'm young and no one wants to see me get sicker and die. Even my doctors have a hard time with it. They aren't going to give me a time frame. Some don't acknowledge where this is leading. They don't want to give a time or declare me terminal, partly because of my age. It would be easier if I was old and had lived my life. Plus this disease is not concrete. I don't have cancer where it is fairly easy to say I have "x" long to live. This is ambiguous. Kathy is in this trap. Not acknowledging it, however, and being in denial only makes this process harder. Partly because when she insists I will get better, I have a harder time accepting things. I try to convince myself I'll get better. In addition, I fear that when I do go into hospice, she'll be upset with me. She'll view it as me giving up, in essence killing myself. This is not so. I've fought long and hard, but I am becoming very tired. Honestly, this is not a life. I am just existing. I am limited by the things I can do. I am basically housebound. This is not the life I wish to lead. If I got better, than yes. But I know that the chance of this happening isn't too great. I can't imagine living like this for another 20 years. Heck, I can't imagine even 5.

I am afraid. I am afraid that Kathy will be upset. I worry about my brothers and sister and the effect this will have on them, and what it will be like for them to lose their sister. It's not fair. They shouldn't have to go through this. They haven't known me to be healthy in years. Dennis may only barely remember me healthy. Brenndan doesn't remember a time when I was healthy at all. It makes me sad and angry that so much has been taken from them. They haven't gotten to live a normal life.

Everyone else in my family is also in denial. They don't acknowledge how sick I am. To some extent, it is because they are conditioned. In their minds, this is what I do; I get sick. I may end up in the hospital, but I always get better. They are desensitized. When my uncle came to help build the ramp, he expected it to be short-term. I wasn't really going to need it for long; maybe a couple of weeks, a month or two at most. When I discussed going to the track to go around in the wheelchair, my aunt said I would get out of the chair and run. I haven't been able to run in years. I haven't been able to go places like the mall for at least a year because of the amount of walking involved and the fact that I just couldn't do it. None of my aunts, uncles, or cousins have called to see how I am doing. They don't realize the seriousness of this. My aunt lives 30 minutes away. She drives by my house to get to church every week. Not once, has she stopped to check in and see how I am doing. They are all very selfish and self-centered. I've been fighting for my life, had a trach put in so that I can breathe, but they can't bother to take the time to see how I am doing. It angers me. I also feel sad because at some point, it will be too late, and they will have missed this opportunity, time to spend with me.

I think one thing that is the most frustrating is those that don't acknowledge this at all. They tell me, "Don't think like that... That's not going to happen... You don't need palliative care... You'll get better... You just have to want it... You have to try..." The best yet is, "You just need to pray and ask God to heal you... Obviously you haven't believed enough... Give your life to Him and He'll heal you... He heals all who ask..." This is not due to a lack of faith. I do pray, but prayer alone cannot fix all things. Not everyone is meant to be cured. I do try; I am motivated. If I get better, I will be the happiest person, but there are some things you cannot fix. I do have faith - a strong faith, but some things aren't meant to be. This is nothing I did or am doing. I know this is hard. It's certainly not easy for me. I pray that others can see the way things truly are, leave their denial, before it is too late.

True Friends

I've said before, that when something like this happens, you quickly learn who your "true" friends are. A disease like this is so isolating. I used to have many friends. I wasn't exceedingly popular, but I enjoyed hanging out with the friends I did have. I had friends I could trust and knew were there for me. Often they would come to the hospital with me. We were close. When I graduated and had to move home, things changed a little bit because I no longer could drive 1 1/2 hours to go to MA to visit. I was replaced by other friends. As I got sicker, I wasn't physically able to drive up to MA all the time. Sad to say, but most people were selfish and self-centered. They couldn't be bothered to make the trip to visit me, or meet part way. When I gained weight due to the prednisone, I stopped going out as much. I was embarrassed by how I looked. In addition to not being physically capable of doing what I did before, I had also gained weight. Though I know that they really wouldn't say something to my face. They wouldn't say that I was weak and fat and out of shape and that if I just had discipline and lost the weight I'd be better. But in my head, that is what they were saying. So I went out less. This just isolated me more. Everyone seemed to be doing normal tings, and here I was locked in my body.

I have been let down a lot. Trach surgery only made things harder, not easier. I haven't seen one of my friends since before I switched to home infusion. When I went to home infusion, I stopped going to MA regularly. I had gotten to the point that I was too sick and too weak to drive that far. Since I didn't drive there, I never saw her because she didn't drive here. In all my friendships, I've been the one to sacrifice things. Yesterday, we were supposed to get together for lunch since she'd be in Manchester visiting her boyfriend. We had planned on lunch. At 2:00 she still hadn't showed. I finally texted her, saying that I was assuming since she hadn't shown up, she wasn't going to. She said that her boyfriend had a church fair and she would try to get together again when she was in Manchester next. I was so angry and hurt. First of all, it would've been nice had she told me this because I had waited for her. I could've done something else or planned something else. I am sick of her broken promises. She says she will visit, then doesn't. I sent her a message back telling her not to bother, that a disease like this showed me who my true friends were. She said she was a true friend. She showed she cared by praying for me but that there hadn't been an opportune time. I got so angry because when it was me traveling the distance, no one ever thought of it. They didn't question whether it was an opportune time or convenient for me. It hasn't been the most opportune time for my other friends to visit, such as my friend John, who is sick and going through the process of being listed for a lung transplant. It isn't convenient or the opportune time for my friend Ducky from New Jersey who has health issues herself to visit, but she does. They do because they care and because they are friends. Friends are there for one another through the good and the bad. They support each other and help each other out. Prayer is good, but I need more than that. I need someone that I can count on during this difficult time. I think out of all the things in this disease, it is the loneliness and isolation that may be the hardest.

I think one of the hardest things about this is telling people. Knowing that I am hurting them and knowing that it will only be harder and only get worse. I wish I could save them from the pain. I wish I could protect them, but I can't. Not telling them doesn't protect them or save them from hurt. It shortens the time they have with me. I feel I need to give them this time, this opportunity to spend with me and do things, make memories, before I'm no longer here. But it hurts me to hurt them, because I love them so much, and that will, never change. I will never stop loving them, even when I'm not here. I know that this time is a time that is all about me, but I need to make it be about them as well, because they are my support system, my life, and my love. My time here is short, I know that. I can already see it, though others may not. I try to deny it. I try to imagine that I will get better, that I will be able to move into my own apartment and live a life, but realistically, I know this isn't true. I am only able to lie to myself for small periods, and even then, I know it's not true. The periods I am able to deny reality get shorter and shorter. I am sick and I would never wish this existence on anyone. If I do anything one day, I then sleep for two days to make up for it. I sleep all the time. I try to deny the changes, but it's hard when it's right in your face. Denying it, won't help. It won't stop it from happening. It won't give me more time or change circumstances. The facts remain the same - I am dying. It sucks. It's not fair. I try to be patient with my friends and their needs. I know this isn't easy. I've been sick for many years. In some ways that fact makes it harder because people are used to me being sick. They are used to me being in the hospital, even in ICU and on respirators. I always get better. It desensitizes them. We've talked about my death. My close friends have listened when I talked of my fears that I was going to die before I was ready. But I don't really think any of us really wanted to believe these were anything more than fears. We didn't really think this day would come. But it has...

The one thing that really gets me choked up and cry is the idea of all those I love left behind. What it's going to be like when they get the word that I'm officially gone. All those years, that I attempted suicide, not once did I really think about it. I didn't consider death and what it really meant, but that is the difference between suicide and true death. Suicide is done out of anger. It is selfish, where all you're concerned about is yourself. It's a giving up. it's going in the corner, curing up in a ball, and dying. It's black. True death is the opposite. True death is white. It is selfless. It is not giving up or giving in. It is acceptance. I worry about my friends and what it will be like to them to lose a good friend, for some we're so close, we're like sisters. I worry about my siblings. Losing Poppy was devastating and hard, but this... I don't know... Parents shouldn't have to bury children. It hurts me just knowing the hurt they will feel. Yes, I know they'll move on. Life is for the living, and gradually, they'll move on because they'll have to. There is no choice. I know that gradually it'll hurt less, but the hurt will never completely go away. Someday we'll be reunited. Just as I know I'll see Poppy when I go to heaven, I'll be waiting for them.

Random Musings...

You know we have very little control over our life. Sometimes we are on the sea of life and we just have to go with it - go with crests and falls, the storms and sunny weather. There are times it's rocky, other times calm. The reality is that though we like to think we control things, we don't. We just have to go with it; and when we think we aren't strong enough, when we think we can handle only so much, we can be surprised by our strength to survive and persevere. We can handle a lot more than we think we can. Do we really have a choice? Not really.

This is a theme - choices. What choices do we really have? What can we control? We have one choice - to live or to die, and even that I'm not sure how much we control. Even if we are seemingly ready to die, are we really? Are you ever? Are you ever truly ready to leave this world and move on? Do you wonder what it's like? You have to. I have to think that it's part of the human spirit to wonder. My question... Does it hurt? Not the actual dying, no, but the process. Our body doesn't just give up. They talk about death rattles - how people who are dying stop breathing and then start again, stop and start. The body hangs on. It wants life.

My life has not been what I would have thought, nor probably would've chosen. I have been through more than the average person. There is so much left that I want to do, that I always thought I'd have time for, time to do. But how much time do we really have? - Not much... Not much at all... Not nearly enough... I think about things and I hope and pray I leave my footprints on this world. I guess if I were ever to say I had an ultimate goal, it would be to leave this world a better place than when I came into it. I always imagined that I'd do something important. You know... write a book, be a motivational speaker, be known for something important. I remember as a kid having such grand ideas. I wanted to be an astronaut, a famous author, to find a cure for cancer, or solve all the world's problems. I was going to marry Prince Charming and be rich, successful, famous, and happy. I'd have a family - one boy, two girls.

As we get older, we begin to see life in a more practical way. I wanted a career that was satisfying. Maybe I wouldn't be famous, or internationally known, but I would be important in my own little niche. I would meet somebody, fall in love, get married, and have kids. I may not believe in happily ever after, in the fairytale type of way, but I believed in happiness. Nowhere, does it say anything about getting sick and dying. Nowhere did I want to become disabled to the point that I truly couldn't work, need oxygen to breathe, or have a trach put in. This was not in the plans. Sometimes life is unfair. I realize, this is very cliche, but it's true. Why do murderers and child molesters get to live long healthy lives, while I don't? No parent should have to bury her child. I have seen mothers that have had to bury their children, and it's horrible. It just shouldn't have to be done. It's not the way life is supposed to work. Of course, my life didn't work the way it was supposed to work, ever. I think of my mom, and it just makes me cry. She shouldn't have to go through this. No, she has not been perfect. She has made her mistakes. Sometimes I get frustrated, sometimes angry, but she is a good mom and has always done her best. I am especially grateful for the past few months where she was home to help me through this time with the trach.

disAbled

I was in college when I was initially put on oxygen. It was during spring semester of my sophomore year. My breathing had been gradually been declining to the point that I needed oxygen. It was around the time that I was diagnosed with CVID. I had had many boughts of pneumonia, been the hospital quite frequently, and intubated ~10 times in 6 months. I came back to campus after being in the hospital, discharged on home oxygen. Some people in the administration asked if I could go to school. I remember when I was asked this that I just stared at the person asking in a complete state of puzzlement. I could not grasp why they would be asking if I could be at school. My doctor had cleared me physically. I knew no other reason why I couldn't/shouldn't be there. I asked them why they felt this way. They said, "well you're on oxygen" as if this statement explained everything. I looked at them and told them that being on oxygen hadn't changed anything. My lungs didn't work; I had difficulty breathing and need oxygen to help me, but my brain still worked perfectly fine. In fact, It worked better than at least 90% of the other students. I had never really considered myself disabled. I have never considered myself disabled, even through all of the challenges I have had to overcome. I remember starting college as a freshman and receiving a letter in my school mailbox asking me to meet with the school's disability coordinator. I was completely confused. Why did I need a disability coordinator? I wasn't disabled. When she suggested I get accommodations I could use for my classes, such as more time on exams, the ability to turn assignments in late, or take exams late. I got angry at this. I didn't need accommodations. There was nothing wrong with my brain, and I just wanted to be treated as every other student would be. I later learned to take these accommodations because they did help when I was sick and in the hospital. Accepting these accommodations didn't change how I was graded. It didn't mean I was weak, couldn't hack it, or was stupid. I was graded on the same level as every other student. I didn't have to use the accommodations set up if I didn't need them, but if I got sick and was in the hospital, they were there to help me out. It didn't give me an advantage over other students. The same was expected of me as them, but it evened the playing field, as I had extra challenges to overcome as a result of my disease, that they did not have. They were tools to help me be successful in such an environment. Though my lungs didn't work, my brain did.

For the same reason, I didn't get a handicap sticker for my car until several years after I was put on oxygen. I never considered myself handicapped or disabled. I had two legs; I could walk. I needed oxygen to be able to get around, but other than that, it didn't limit me too terribly much. There were even times I tried to run the track, with the oxygen attached to my back of course. I put the oxygen in a small backpack and ran the track. My goal was to be on the track team. I wanted to prove that someone with a handicap, like me, could do just as much as an able bodied person, so long as they had the modification to do so, such as wearing oxygen or having a prosthetic leg. One of my friends in college had been born without any legs. This didn't stop her at all. She was on the softball team, an excellent athlete. With her prosthetic legs she was able to do nearly everything anyone else could. I knew of people who were considered able bodied, but were able to do much less. It wasn't until my lungs had declined quite significantly and I was in chronic respiratory failure, that I broke down and got the sticker. By that point, I had no other options. I couldn't walk long distances and could only go anywhere if there were handicap spaces available. Unlike most people who would love to have a handicap sticker because they could park closer, I had fought to not need one. For me it was a defeat, one that symbolized my disease had won. I mourned the day that I got my handicap sticker. It represented the extent of the decline in my health. Then I needed a cane to walk. Now my mobility was affected. I couldn't walk long distances. I certainly couldn't walk long distances without the cane. Each thing was a blatant reminder of the progression of this disease and the losing battle that I was fighting. Now I'm in a wheelchair.

While part of a disability is about the functional loss of ability, there is also the body image, and how you now see yourself. The functional loss is honestly the easiest part to live with. Yes, you have difficulty walking, but you can use a cane, walker, or wheelchair, whatever the case may be to get from point A to point B. That isn't the problem. The real problem comes in how you see yourself. You used to be completely physically able. You could go and do whatever, whenever. Now you are limited and in many ways; you become isolated. It is hard not to lose your sense of self in the process, to remember that you are still a valid and worthwhile human being. Your worth as a person is not based on what you are physically capable of doing, whether you are able to walk, but on who you are as a person and the value you bring to those around just by being yourself.

Before the trach I had planned on tutoring through the summer. I had tutored a student in biology and this year she would be taking chemistry. She struggled academically and had a learning disability. Her biology teacher had suggested taking chemistry in the community, which wasn't a true chemistry course, but a nonsense course. She didn't think she was capable of doing the regular chemistry course. My student wanted to go to college, and colleges would require the regular chemistry course, not the chemistry in the community course, to be considered for admission. I planned on helping her through the summer, introducing her some of the key principles, so that when she saw them in class she would already have a basic understanding. I would continue to tutor her through the class. The trach prevented me from being able to work with her over the summer. I was unable to talk and this made tutoring quite difficult. After doing rehab my speech had improved and I wasn't concerned with communication. Her mother still needed a tutor for her, and though I had a physical difficulty and couldn't yet drive, so long as she came to my house or my mom drove me to meet her, we could still have lessons. My brain hadn't been effected. This is the first time she has come to see me. I was so nervous. I considered attempting to greet her using the walker, not the wheelchair, so she wouldn't see me as physically disabled. I worried that she make judgements and think I was less capable. My mom had to remind me that she wasn't paying for my ability to walk, but for my brain and knowledge, which had not been affected by my illness. While this is true, it is hard not to let a physical disability affect your value and worth as a person. You feel deficient, and this is carried over into other aspects of your sense of self. I have become very self conscious and almost ashamed of my physical disability, not wanting others to see me in the wheelchair. It is important for me to remember that I may have a physical disability, but I am still perfectly ABLE, able to think, able to be a valued person, able to have a purpose. This hasn't affected my worth. There are still many things I am not just capable of doing, but that I excel. My ability to walk hasn't affected this in any manner. My thoughts return to my friend in college born with no legs. This was a strength not a weakness. I am not DISabled, but rather, disABLED, the concentration being on what I am ABLE to do, not what I am not.