I know it's been a long time since I've last written and I should probably be updating on my new transplant, my status, updates, etc., but this is what I feel today so this is what we get:
Empathy [
em-
puh-thee]
no
un
1. the intellectual identification with or vicarious experiencing of the feelings, thoughts or attitude of another.
2. the power of understanding and imaginatively entering into another person's feelings.
For the last 15 years you've only had a sick daughter or sister or friend or lover. The thing that is so quickly forgotten is that I
AM that sick person. I don't get to go to a home free of sickness after a doctor's appointment or leave the hospital as I chose or, more so, take my health for granted. I have been at the mercy of my body every day of my adult life, and I will be for the rest of my life. Try to grasp that. Again, we come back to our theme of empathy.
If anyone believes that I am happy sitting around my house day in and day out, not working, being alone and sick, you are sorely mistaken. I am a thirty year old woman reliant on the government, my parents and the generosity of others to survive. This breaks my heart that I cannot take care of myself. I know when you are with me you sort of understand this. I have to believe that you know that I want so much more for myself. In my dream world I would've finished college, been in a career and maybe even had some babies, but in the real world I have not been (and maybe never will be) allotted to complete these things because of the great divide that my health has impeded on my life. If only you could walk a day in my shoes maybe you would stop and lend me a shoulder to cry on, maybe even hold me a while. Really this is all I want because I would never ask anyone to bear this burden for me.
This is the truth.... you wake up everyday to your alarm, time to start the day and believe that this is how I should do it too. I wake up two or three times in the morning debating with myself if another hour of sleep will ease my pain or make my stomach settle. When I finally creek out of bed I don't think, "What's on the agenda for today?" I evaluate my pain and then decide what I am capable of doing that day. Some days I get a bunch of stuff done, some days are so unbearable that I can barely get my pills in my mouth. Even now as I type, my wrists and knuckles ache. I guess that is something I am to get used to because my joints
never stop hurting anymore. Could
You do this every day? I take my blood pressure, my weight, my temp and spend a small portion of the morning fretting about each number individually wondering if the change means I'm sick or that my kidney is functioning less or I'm going into rejection or even failure, do I call the doctor, do I wait another day... You will never truly understand this because your life has never involved these things. After all the worrying I have to remind myself multiple times a day that it's going to be ok to keep the depression at bay. I am constantly acutely aware of my emotions because I know how quickly I can plummet into that abyss of not caring, not wanting to fight anymore.
That's what my life is... a fight, every day. You don't understand this because, first, it has been so long since you've seen every day how hard it is for me, second, because you don't have to fight, you just live. In the meanwhile, I know you get sick of hearing bad news from me, of hearing how everything hurts or how my creatinine is up from my most recent infection or how I can't get up the stairs because my knee aches or how nothing exits my body in a comfortable or normal fashion. I know you are almost as sick of it as I am
so I put on a happy face and tell you I'm ok, that I'm so much better, but what is better?! I will never be all the way better. It's taken so long for me to come to terms with this fact. I wish you could understand this.
It is not easy to tell you the whole truth of how bad it is because I hate seeing that look on your face, the one where we both know that nothing can be done.... or, even worse, the one where you look at me like I'm not doing enough. This is why I hold back, this is why I avoid. There is nothing that I can do to change the cards I've been dealt. This is my baggage that I will carry around with me until it get the best of me. Because I already know I will not live to be an old lady, I will not age gracefully like you. I probably feel older in my body that either of my parents do. I don't think they even know how to begin to understand that.
It is not easy to ask for help because, really, what can you do? You will never be able to take away my pain or make me normal or healthy. Furthermore, it is not easy asking for money. It is so demoralizing to have to ask for money for the basic necessities that I should be able to provide for myself, but cannot. Don't you understand? If I could go back to a normal life I would, but I, literally and physically, cannot. I don't want to have to make even one person suffer for me, but I cannot do this alone. I need to depend on my loved ones because I can not do this alone no matter how hard I have tried.
And when you ask what you can do to help and my only reply is a shoulder to cry on, know that this is hard for me to ask for.... even harder when you say no or come up with an excuse (which is still saying no). I try so hard to do this by myself, but sometimes I
need someone to
let me cry, for someone to hold me and tell me it's going to be ok (even though it's really never going to completely be). Can't you see how hard it is for me to let people see me this weak?
I know you think I'm lazy or unmotivated, but please try to empathize. I
need your empathy. Please try to understand that I am only partially in control of my life, the other part I am completely at mercy to. You've heard it before, but try to imagine what it is like for me, what it is like to have to fight your own body, to worry every day that something will go wrong or that something will go REALLY wrong. Try to put yourself in my place because you will never have to go what I have to go through. It is SO much harder than your outside experience. All I really want/ need is a little empathy. Not lectures or pressure or all these other things you lay on me. Just try to understand, feel a little for me for a while... then be grateful because you will never have to go through what I will be handling forever.
They say if you don't have your health you don't have anything...... what does this mean for me?
