The Latter Days

Every day of sickness can seem like a year. Sometimes every moment is so clear and precious. Others days every moment is a frustrating boundary or a dark cloud of pain. I've been having some of the latter days.

I know it is beyond my control, but I'm tired of not being able to be the loyal friend I think I should be. Everyone works so hard for me and gives, gives gives. Sometimes I think that if if I'm not working towards something (like returning a friend's phone call or finalizing plans with them) then everyone else must be having to work extra hard. Then I feel guilty and I feel angry at my disease. I feel like I'm constantly letting people down.

Living with a such a severe illnesses as mine is like living between the worlds. I know I've said this before, but I think it bears repeating here. When you're living “between the worlds” you feel like if you can't be a part of the lives of those around you and the world around you then you'll disappear. And yet the amount of effort it takes to communicate, to connect, seems gargantuan at times.

I've told my friends to always let me know what they're doing so that if I feel up to joining in I will. But more often than not I have to turn down invitations. Everytime I do that I feel like I've let them down, like I've given in to my disease. I know this isn't true, but it's how I feel. When I do get out to be with my friends I often end up pushing myself or covering up any pain I'm feeling. I don't want to let the disease win. I feel like if it shows, if it interferes, it wins. I also feel like I'll worry my friends too much if they see my true condition.

Yesterday, however, I decided that my friends wouldn't want me to be putting on some mask. I tried really hard to allow myself to be how I feel. It's hard, though. I cover up even at home. I'm tired of having to have people take care of me so, even if it kills me, I'll get up to do something myself. Or maybe I'll hide my symptoms until I really can't anymore.

I wish that people would come here to see me. It seems like my friends very rarely come over. I'm always coming to them. At home I feel like I have more permission to be sick. At home I can stay in bed, I can wear whatever and I have all my “supplies” at hand. I realize people want to get me out of the house and I appreciate that. I do like to get out of the house. But most of the time it's far more trouble and pain than it's worth.

Then I think that if people did come over I may be too sick to really respond to their conversation or to participate in what they're doing. Again, all they do is give and I have nothing! I feel so guilty and selfish because of it. I want everyone to realize that, although I may not respond to you with the feeling you expect it's not because I'm not interested. It's just that communication is so much work for me. Sometimes it's all I can do to send a simple text message.

And all of those times where I seem to disappear or fail to communicate—I haven't stopped thinking about all of you! If only you would come to me then maybe I could express how much I appreciate you better. I love it when people come to visit me!

It seems that I am doomed to fall short of others' expectations. Or are they my expectations? And I mustn't think that.

There will be a miracle.

I will get better.