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.

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.

Friendship

One thing you learn when you get sick, or when you are faced with life's difficulties, is who your real friends are. As one of my fellow zebras said, "having severe health problems certainly shortens your Christmas card list." While many people can call themselves your friend, actions speak louder than words. A true friend is there for you no matter what - through the thick and thin, good and bad, sickness and in health. They are the people you can truly count on. You know they care about you and they support you in those times of adversity. They are there to be the shoulder to cry on. They are your cheerleaders. When you think for sure you can't go on, they are there to hold you up. They want you to be the best you can be. They accept who you are. They like you for being you. With them you can drop the mask, and just be you. In addition, friendship goes both ways. As much as they support you, you support them.

When I was first diagnosed with my immune disorder, I quickly learned who my true friends were. I was in the hospital frequently. Times that I wasn't in the hospital, I didn't feel well - I was too tired or too sick. I'd make plans to do something or to go out, and I would end up having to cancel because either I'd be sick or wouldn't feel well enough to go. Often people didn't understand this. They wanted to go out and just have fun, or be able to do things spur of the moment. I learned that though people called themselves your "friend" this was in name only. They didn't visit me in the hospital when I got sick. When things were good, they were the first ones to be there for the fun, but when things go tough, they were the first to high tail it out of  there as soon as they could. They did not understand my disease, and everything was about them. I also learned that some people are incredibly shallow. They didn't want to be friends with a person who is sick. Though it is a hard lesson to learn who your true friends are and it hurts to discover that several people who you thought were your friends aren't, it is great to discover those that are true friends. These are the people that support you no matter what. They got your back. They do visit you in the hospital. They may even wait with you in the ER. If they can't, they still call to see how you are doing. You know they care.

When I got the trach, my group of "friends" got even smaller. The thing that hurts is that should the situation be reversed, I'd be there for them, and I have. I don't expect for people to visit, though it is nice when they do so. Being sick and in the hospital is no fun. You feel lousy, you're subjected to painful and often invasive medical procedures, you're bored and depressed at not being able to participate in your usual every day life. Times when being sick means you miss one thing or another, you then also feel guilty for having to miss that engagement. You feel as if you have let people down. I have missed many holidays, birthdays, even one of my friend's wedding. There is the disappointment you feel at having to have missed it because you were looking forward to it, but also you feel as if you, yourself, are a disappointment, because once again, you let your friend down. So, I understand people not being able to visit, but it is nice to receive a phone call, text message, or email just saying "hi" and letting you know that they are thinking about you.

It's hard. I have one friend who I was best friends with. She went through some difficult times and I was there. I went through some difficult times and she was there. We met in college. When I graduated and had to move back home, things changed. As long as I was willing to drive an hour and a half to see her, then we were cool. But as I got sicker, I wasn't able to do that. She didn't drive down to see me, nor did we meet part way. It was inconvenient to her. Our relationship grew further apart as my illness prevented me from being able to engage in strenuous activity. Soon I became ashamed of myself and my limitations as well as the physical changes my disease had caused my body. When she'd have a hard time, she would call and I'd stop what I was doing to be there for her in any way that was possible.

One of my other "friends" I discovered was really very self-centered. My illness is not "convenient" to her, too which I am sorry. My disease is not very convenient to me either. She has not called or made an effort to visit. There are times she says that she will visit, but it is a bunch of broken promises. Yet, she asks, "We're still best friends, right?" No, I am sorry, we are not. I am too tired, too weak, and too sick to pacify other people's needs. I don't have the energy to do things just to make them feel better about themselves.

And yet, I feel blessed. Through this illness, though I have lost many "friends" I have gained many true friends. People who I have never physically met, only know them through FaceBook, have become a huge support to me. They genuinely care. They are worried about me and my well-being. Though they may not be able to visit, they message me to ask how I am doing. They send cards and well-wishes. They pray for me and my health. They encourage me and my progress. They show concern and worry if they don't hear from me. They are my support. Sometimes I wonder what it means that people who have never physically met you can be more supportive and care more than the people that are physically close to you. Some may think it is sad that we reach out to those that are in essence strangers, and don't provide for those close to us. Others may say that it is amazing that we are able to share our love, support, and friendship with people all over the world. I know that the people who I personally know and are close to geographically would not act any different if things such as FaceBook didn't exist. They would not be more supportive. Instead I would feel alone and isolated. In my opinion, things like FaceBook, open doors and allow for relationships to others that otherwise wouldn't exist. We all need to feel loved and supported, to feel that we are cared about, and that we mean something and are valuable to others. I think that it is awesome that technology today allows people globally to be brought together.

L-R (Me, Mebsie, Ducky) 2 wonderful friends I met on FB