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.

A Way to Find Hope

As a massive hurricane approaches, it is hard not to see destruction and devastation, especially after already experiencing a tornado, an earthquake, and a tsunami in the past few months. In addition to all of the strange and severe natural disasters, one doesn't have to go very far to see more evidence of what seems to be corruption and terror. The news in the newspaper and on television is loaded with stories of school shootings, terrorism, gang wars, baby killings, and many other terrifying events. It is easy for a person to question what this all means, and if this is the end of the world. But rather then feel powerless and a victim of life's circumstances, I see hope. I see the people that are brought together, to help those in need. In Springfield, people donated backpacks and school supplies for children in need after the tornado. It is through adversity that the true glory of people is seen. People come together volunteering their time and resources to help others. After the tsunami, people made food for the victims; they donated clothes and other things. People came together to rise above the terror and destruction. There is a reason for everything, though we may not know it at the time. Perhaps, God is using His will to bring people together. In this, they are able to share His love and His glory.

Having the trach has been extremely difficult. It has been a very long road, and I know this road is not yet over. I have many more challenges ahead, but I know with the support of others and God's help, I can persevere and not only survive, but thrive. It is through God that I am alive and it is through prayer that I have been able to survive. I have experienced extreme adversity, and it is through God that I have the strength to get through it. People I don't even know, except through FaceBook have been there all the way, praying for me, praying with me, and cheering me on. There have been many times that I wanted to give up.The time between when the initial trach was put in and the trach was downsized, was a horrible time. I felt the future was bleak and I had no hope. The trach had been put in with the purpose of enabling me to go home and have a decent quality of life. Had I had refused the trach I would never have been able to leave the hospital. Though this was the intent, reality was different. I went home unprepared for life with a trach. I was essentially tied to a tube and only able to move around my room. I felt horrible. I was weak and sick. I was unable to function, and honestly if I had to stay that way, I didn't want to live. I prayed that God would take me, that for once my pain and suffering would be over. But it was not my time. I now am better prepared to life with a trach. I have hope.

One thing I have learned is that you can't take anything for granted. In times of adversity, it is possible to rise above and survive. People come together to support one another. You can't live your life in fear, but rather must live each day as if it is a gift, a gift from God.

It is through God and prayer, that people are able to come together in times such as these, through natural disasters and the struggles of life, that we are able to rise above it all. It is through God and prayer that rather than seeing devastation and fear, we can see hope. It just depends on how you look at things. You can view it as a tragedy and something that you can't control in which case you'll feel powerless. Or you can view it as a situation of hope, something that can be an instrument of God to bring people together, to  support each other.

Most people think of FaceBook as just a social networking site. They don't realize that it is much more. Through FaceBook people who otherwise would not know each other, get to know one another. To me, ti is a giant prayer group. When one person is sick and suffering or just needs some extra prayers, people from all over the world come together and pray. We pray for people we don't even know. Why? because they need it.

At first, I was afraid to say "praying for you" or "God Bless". I was afraid of mentioning God or my faith, or asking for others to pray for me. So many people get all upset over mentioning God or faith in the community but it is okay to do so on FaceBook. It amazes me how many people can come together to pray for a person in need. People from completely different places, with different beliefs, different life styles, and different struggles all come together to pray for each other and help out in any way possible. It can be quite depressing and overwhelming to see all the pain and destruction in the world today. But then I get on FaceBook and I see a person who has asked for prayers from someone they know, or says that they will be praying for me, and I know that the world is not all bad. God's work is spread on an international level. God is using others as instruments to spread the word of God and share His love. It is truly miraculous.

A Good Christian

Often people claim themselves to be "good Christians." They preach the Bible and speak the word of God. They attend church regularly. But what is a good Christian? Being a good Christian doesn't depend on how often you attend church or how much you read the Bible. In my opinion, the church is an institution. Being a good Christian depends on your actions and your words. Being a good Christian means following in Christ's footsteps, doing what He would want you to do. A good Christian does not judge others. None of us is perfect. It is the reason that Jesus died on the cross - so that He could wash away the sins of the world and so we would have everlasting life.

One thing that has upset me greatly and makes me very angry is how some of my family members have reacted to my illness, especially my trach. The only person other than my mom, brothers, and sister that has visited me is my grandmother. None of my aunts, uncles, or cousins have shown that they care to any degree. I do not expect them to visit. My aunt, uncle, and cousins in Georgia, or my uncle in Florida are too far away; however, in an age of technology such as the one we live in, they could call, send a text message, an email, a card - anything. There are many ways to let a person know that you care and that they are thinking about you. I have an aunt and uncle that live ~20 minutes away. They drive by my house on their way to church. Yet, they have not called, sent me messages, or visited me. They have not asked how I was doing, or if I was okay. I know my mom has kept them all aware of my condition and what was going on. It angers me because they profess to be a huge support to me, but even as I lay in the hospital fighting for my life, fighting to breathe and having to have a trach put in so that I could continue to live, they have not contacted me in any way. They profess to be good Christians, yet what "good Christian" doesn't attempt to provide support to a family member in need. They say they are busy. Too busy to make a phone call, too busy to send a text message, too busy to send and email, too busy to send a card? It is a shame when we are "too busy" to share care, concern, love, and support to those we love.

Part of my anger is fear. I fear that in not taking the time to show they care or ask how I am, they will miss out on that opportunity and regret it. I worry that should I die, they will regret this. I will not hold it against them, though it hurts me that they have not even called to ask how I am. My fear is that by the time they realize it, it will be too late. I saw how deeply my grandfather's death effected them. Mainly because they did not take his illness seriously. They took for granted that he was there and assumed that he always would be. But we all must die at some point. Nothing is forever. When he passed, they did not have the opportunity to tell him how much he meant to them. Though he knew it, they didn't have the chance to say it. I have watched how deeply that has affected them, and I fear for that happening with them for me. I know that I will not live forever. The trach was meant to give me more time. It is not a cure. It will not stop the progression or fix the damage already done. It has given us more time, time to enjoy each other and make more memories. Memories that they can think about and treasure when I am no longer here. Memories that can provide them comfort and love when they feel sorrow. So my anger is more for them and their wasting an opportunity. And yes, to some degree it hurts because it seems as if they don't care, that fighting for my life and the struggles I have endured are not importnat and mean nothing to them. To me, they cannot speak of walking in the Lord's way when they cannot take 5 minutes to call and ask how I am doing, cannot stop by when they pass my house anyway.This saddens me and I pray that they will come to know the Lord and His love, that they can enter this world walking in His light and be shown His mercy, for His mercy endures forever.

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