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.
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