The "New" Normal

One of my friends (thank you, Nancy!) commented on my blog about having to learn "new" ways of doing things. She was absolutely right. We have gone through many "new" ways as my health has changed, as my energy has changed, as my abilities have changed, and so on. While in Seattle for transplant, they talked alot about "new normals". They encourage both the patients and the caregivers to prepare for this and in fact, there are many "new normals" while still in Seattle.

However, the general consensus seems to be that when the patient comes home from Seattle that he or she is now well. I mean, they must be well to come home, right? Life should pretty much be as it was before. The expectations and pressures put on me, and that I put on myself, to be fine, tbe like I used to be, to just be freakin' normal, were huge. I failed every test of being fine and normal. It is like banging my head against the wall every day. It is incredibly lonely too.

The problem is that I am not who I used to be, I don't really have a "new" normal. My life exists in twelve hour chunks, basically. I no longer commit to anything because too often I end up sick and break my word and commitment. Sometimes planning even in a twelve hour stretch is risky. An example is being out to dinner at 7:00 pm and being in the hospital at 4:00 am. (Meningitis. Who knew.). I am rarely on time. I rarely remember the names of people I meet. I have lots of alarms set because I literally can forget the really important things, like picking up my kids. I am no longer smart. My body is destroyed, inside and out. My feeding tube bulges out of my clothes. I am afraid to cook when I am alone in the house because I might forget there is food on the stove or in the oven. At least I finally have hair.I won't bore you by continuing to list all the changes that I have to "accept".

I don't think my family is thrilled about all the "new" things either. All of us have exhausted ourselves to just get to today. When is the proverbial day off? How do we learn to just accept it? We didn't know it would be like this. And that there would be so many new problems, ordeals, changes, and traumas. We are tired.

Friendships get twisted, tried, and tested. Because a friend can move on more easily, my heart has been incredibly hurt by some friends who have simply had enough. Apparently it is very draining to be my friend, to get swallowed by all this crap. . The strength of many relationships have been tested and sadly, some have gone by the wayside. Part of me understands, the other part just cries and gets angrier at my "new" life. My family, unfortunately for them, is stuck with me....

I think you get it. I could quite literally compose a very long list of how I am "new". Even thinking about it depresses me. In fact, I am depressed alot of the time. I can't stand the "new" person that I am. Not that the "old" me was perfect, but I want what I had back. Please put my body parts back. Please put my health back to pre-cancer days. It was scary enough then..... Please give me my mind back, my intelligence, my sanity. Please pull me out of this dark pit. I hate this.

I guess this is my "new normal".I am in grave internal conflict for feeling this way when other have already died from pre or post transplant issues. It makes me feel ungrateful. And the odds are that one of every three patients who make it to year two post-transplant die. I feel guilty that I am alive while others continue to die. But I would imagine their lives weren't particularly pleasant if they declined so significantly that it lead to their death. The counselors say it is survivors guilt.

But I guess that ultimately what I am trying to say is that this sucks.