Wednesday, September 15, 2010

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.


Anonymous said...

I am sorry you have to go through all of this. I can't imagine how frustrating and depressing it must be. Perhaps part of the reason you are going through it is to help others to understand what it is like? I completely believe that you are helping others in ways you don't know about, even as you yourself must go through the suffering. Just know that you are loved by many that you don't even know...

Mary said...

I can only imagine how difficult friendships have been. There is nothing like a crisis to show you who your true friends are. Sad but true.

I didn't know the before version of Sally but I'm looking forward to getting to know you now and see what your new normal will become.

Nancy B said...

My guess is, the friends that have fallen away feel terrible about it, too. We are all living lives of quiet desperation, in one way or another. Some of us handle our foibles well and...some don't. Your blog reminds me to be grateful for even the "difficult" stuff in my life. Nothing I am facing now can even hang in the same circle as your and your family's troubles these last few years. All I can say is, own your have a right to be angry even though you understand where the other person is coming from. Writing is so therapeutic for me. It seems to be for you, too. I am glad that you can still engage yourself and others...and in that arena, you have not "failed". Not one bit.

Adrienne said...

Hey Girl! I have thought of you often, but I guess I am not the best at keeping intouch. I am sorry for the "New" you that you dislike so much. You have been through so much and I just pray that there comes a time for you that you can sigh a breath of relief. I hope the boys and Craig are well even though its been chaotic. I still believe you are one of the smartest, literate people that I have come across in my life even if you feel you are losing your mind. Even your blogging represents your intelligence. As for the friends that you feel you are burdening, if they are true friends, they will still be your friends in the end.Take care girlie:)XOXO Adrienne