"Dear Jen,
I think what you are describing (in your posts) is true for most "chronic" health conditions as well as grief over loss of a loved one. There is an initial outpouring of sympathy which tapers off. This is partly due to the fact that all the people around you who may have helped you out still have to deal with all the same things which occupied their day before you had your surgery. They may be able to shift things around for a while but eventually, they have to deal with their own issues as well. Think to your own experiences. You may have put your family on hold to help out one of your sisters or a friend after she had a baby but eventually, you have to go back to deal with your own family and catch up on all the things that didn't get done while you were gone. It is not that you loved your sister any less but you have your own life to lead as well.
Right now, you are still in the early stages of struggling with a life altering brain injury. You may regain most, if not all, of your physical strength but you will never be the same person you were before your surgery. Even if you weren't struggling to regain various abilities, there would be grief at that loss.
If you listen to Eckhart Tolle, who lectures about "being in the moment," even someone who does not experience a trauma is not the same person 5 minutes later from the person they were earlier. You had someone messing around in your brain, the very essence of who you thought you were. Talk about the ultimate invasion of one's personal space -- a rape; a violation of your very being! We are all unique but as we try to empathize with what others have undergone, only your fellow brain surgery survivors may truly "get it." Time and again I have found this out myself. As I have grown older, I have had a variety of experiences from which to draw on to help you understand where someone else is coming from but until I've actually experienced that problem, it is "not the same." Now that I am legal guardian for my Mom, I have even more understanding of what my friend, Terry, has gone through dealing with her mom.
As for people wanting you to help with things that you previously volunteered to help them with and not understanding that "you are still sick," remember, they are just trying to do a job that they probably volunteered for as well. I was a volunteer coordinator for several different groups and in a sense, still am when it comes to some of my activist activities fighting rezonings and such. I frequently found that it took more time to get other people to help me than to do something myself so I got very bad at delegating unless it was something like "getting bodies to show up at a meeting or to work an event" where I literally did not have a choice. Sometime this is a bad thing as you don't keep your "group" engaged. Anyway, I really appreciated someone who would say something like, "I can't commit to something every week but if you have a one time job that requires ...."X", I may be able to fit it in my schedule. You could say that between physical therapy exercises and doctor's appointments, you don't know what your schedule is going to be like from day to day, try me again in 6 months or if there is X, that I can do over a week's period at home....(whatever you might feel like doing).
Another thing I have discovered during the aging process is that our behavior, even our thoughts, are not as purely under our control as we might like to think they are. We are often at the mercy of our biochemistry. Part of your anger is grief over your loss but there may also be a physiological component. Low blood sugar can turn even a nice person into a meanie. I used to wonder if a lot of the unpremeditated murders were committed by people who were hungry. There is a point, I can usually feel it when it comes on now, when my blood sugar drops and I over react to almost anything. My husband is the same way. They are discovering more and more mental illnesses are at least partly triggered by biochemical imbalances. I have no idea how long it takes the brain to recover from a surgical invasion. Could there still be some inflammation or swelling which may be triggering some of your emotional responses? If so, it might help to take a deep breath and say some sort of internal mantra such as "It's not me, it's my brain that feels this way." In my husband and my case, we often recognize the "hunger over reaction" in each other and have been known to either (a) keep really quiet until the food is ready or (b) say "eat something." Since we were married almost 11 years before we had Kaitlyn, I had already learned that being hungry makes us cranky and for years, rarely left the house with her unless I had some sort of snack and capri sonne drink in my purse :) I don't know if it was the fact that I was 30 before I became a parent or just have more imagination than some of the people I encounter but I used to feel amazement at all the things I saw parents doing with their kids, expecting them to behave perfectly, without any consideration to the fact that the child might be bored; tired; hungry; etc. I mean, taking a kid shopping near naptime is just asking for trouble! Sometimes, these things can't be helped but at least try to make an effort to mitigate the impact on the kid."
Here is a sample of Eckhart Tolle's meditation on being in the present moment:
Yes, a million times yes! This is showing love and support. Helping someone through trauma is pretty big and may take longer than you think, but keep in mind it is their journey, not yours. No two journeys are the same.
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