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.