I’m more than 8 months post transplant. There have been some very difficult challenges. I’m pretty sure you know that. But what has been the hardest part?
Pain and discomfort? I can’t even describe the pain I felt at times. I remember one time of pain so bad that my personality changed into a loud, demanding, swearing monster. I actually threw things. Yeah, I know. Those of you who know me are having a tough time imagining that. But, I don’t think that has been the hardest part.
Losing income, savings, retirement and house? That was tough. You spend life accumulating and then see it all gone within a year. But, it was just stuff. No, that wasn’t the hardest part.
Change of community? That was certainly one of the most difficult things to go through. My friends are still my friends but it’s different now. We have gone down different paths. Or, perhaps it would be more accurate to say I was swept down a different path. Liver disease was like stepping on an airport people-mover walkway and then wanting to change direction, wanting to go back. No, there is no going back. My community now is largely an online community. I love my online friends but I can’t shoot them with a Nerf gun. Do you understand what I’m trying to say? Hard, but not the hardest.
Losing my perspective? Actually, that was not hard at all. I love the perspective I have now. It’s like I have new eyes and see things like I never saw before.
Changing roles? Yeah, now we’re getting into the tougher stuff. I used to be the bread-winner. I had places to go, people to see. I had projects, appointments and lunch meetings. I couldn’t wait to be able to just stay home. Today I am a home-maker learning how to do things that Robin seemed to do naturally and well for the past 28 years. I plan the menu, I grocery shop, I do laundry (not all of it), I cook, I clean, do the dishes and make the bed. Mondays are for grocery shopping and errands, Tuesdays I wash the floors and make the hardwood shine. Thursdays, I normally spend the afternoon with my dad. I still look for stuff to do instead of doing the stuff I should do. I think we all do that. I try to write a couple hours each day. But, yeah, my life is very different now. I used to feel like a pretty big deal and now I don’t. I know, reality is that I was not a big deal then either, I just felt like I was. Changing roles has been very hard, but not the hardest part. Maybe it’s contributing to the hardest part or making the hardest part harder.
I think the hardest part is that I now see myself as a not contributing much of anything. I am on full disability and worried that I’ll never come off it. Very few liver transplant recipients make it back. It’s a fatigue thing. This is hard to say publicly because I know it sounds whiny and self-important but I promised to write honestly during this journey so I continue to pour out the bad with the good. I used to feel like what I said mattered to people, that I had influence and now, I really don’t. I dislike my own insecurity.
Okay, okay, before you all chime in with how important I am and what a wonderful ministry I have in writing this little blog on the internet, just hear me. It just isn’t the same.
How shallow am I? It makes me angry at myself. I guess I feel like in society, home, and community I don’t have much of a voice anymore. I know it’s probably something deep inside me, some lacking or some injustice pushed on me when I was a child, but I feel like now I am a drain, a throw-away, of little value. Maybe I don’t really deserve to have a voice. Why do I think I do? Is it because I had a voice when I was working and bringing home the bacon? No bacon; no voice? I don’t know. Maybe it’s all just sexest foolishness.
Yeah, you can get your bible out and send me a verse or two telling me where my true value lies. I know that in my head. Somewhere. I just don’t feel it. Or maybe it’s like, “Yay, Jesus loves me. Cool. Jesus hears me. Awesome. But, it’s not enough.” Is that okay to say? I know Jesus is supposed to be all we need and want according to all the Jesus-is-my-boyfriend worship songs we sing. But Adam was hanging with God when God said “it is not good for man to be alone” so, in that sense, God wasn’t enough.
Wait. I know you love me. I get it. Relax, you can’t solve this for me. A thousand emails won’t make what I’m feeling go away. There isn’t a fix outside of me. This is between me and God and maybe a good shrink. 🙂 We’ll work it out.
There’s a lot of stuff on Facebook about lazy good-for-nothings laying around collecting benefits while other people are working their butts off. When I read those, they hurt because I see them as talking about me. People are mad about people like me. They’re irate. I paid in to Social Security for 30+ years. I know I’m just getting the money back that I paid in, but still, it doesn’t feel right to do nothing and get a check for $1100 every month.
Loss is the hardest part of this journey. I feel like the old me was tossed out with my old liver and now I have to get used to my life that came with my new liver. I feel like somewhere inside the old me is still there, still expecting the same voice, still expecting the same level of trust, respect, and value, but the new me, the needy me, apparently doesn’t deserve any of it. Or, at least, I feel like I don’t.
I used to counsel people who had the need to be needed. I tried to get them to see the problems with finding fullfilment in being the rescuer, the go-to-guy, and Mr. Everything. I told them that the danger in living that way was that someday they might no longer be needed and if that ever happened, they would lose their sense of self-worth and identity.
Now I know I was telling the truth. I know I’ll find it again. And if you feel the same way, I pray you’ll find it too.