I understand the broad range of reactions you get when explaining your medical situation. We don't have missing parts, no apparent disfigurement we must be faking it. On the other hand when I drop the "brain tumor" diagnosis on people the reaction is largely avoidance. Sometimes the conversation ends abruptly sometimes there is a comparison to normal everyday fatigue or minimal ache an pain that everyone gets now and again. Such as the coworker who said ya I need a nap when I get home too.
I have learned to keep my symptoms to myself. It is hard to find understanding among family members as well because they are not ready to see us in any other light than that which they have grown accustom to. We don't face change well. My daughter has trouble understanding why I have withdrawn from my grandchildren. I am a hands on pappy and love to play with my grandkids who adore me but I wear out quickly and get edgy when the noise level is up for a long period of time or the kids all are talking at me at once and I can't pay attention any more. She (my daughter) just wants her dad to be the same old dad. I know it scares her to see me as less than the rock I have always been in her eyes.
My wife is better at understanding now than she was when the symptoms were at their worst between 4 and 9 months post GK. Her most often used quote was why can't you just snap out of it and you must have allergies now just take a sinus pill you'll feel better. She has seen me enough times now; fall off the deep end all of a sudden and unable to function enough times that she is a little more understanding.
My symptoms come and go, it does appear as though I am using them to wiggle out of unwanted activities, obligations I am no longer interested in etc. I wish I could get a handle on the triggers so I am better prepared and can sort of schedule my activities around them, but I just try to deal with what shows up and go with the flow. I had been keeping a diary of symptoms, the times I feel as though I fell off the deep end and describe circumstances around the event. There is a correlation between dramatic shifts in air pressure, storms coming though the area, transition days between low pressure fronts and high pressure fronts, pop up thunderstorms, I have become a walking barometer. At my six month post Gk appointment with the neurologist we discussed disability retirement, I shared my diary with the neurologist, my wife was with us listening to the discussion. It was the first time my wife really took a look at the time line of symptomatic events. I think that was a turning point for her when she began to see the patterns I would talk about.
It is good advice to explain yourself minimally allowing those around you to decide how they want to view you and leave it at that. Try to be as normal as you can and just seek solitude when you need to. People will come to an understanding or they won't. I avoid my friend at work who continues to belittle my symptoms when I discuss them, when I see him coming I gather myself, suck my chest in sort of speak and say I'm good today how about you, when he asks and keep on walking by. I am taking an early retirement from teaching at the end of the school year, partly because I am using a lot of sick time because of my symptoms. My coworkers think I am trying to use up my sick days before I leave and poke fun at me when I come back to work after a day off. I just respond with the number of days left to retirement, they don't want to here about my symptoms that caused me to take time off work. I am paid cash for the remaining sick days unused I would certainly rather have the cash than the day off.
I don't know how to change other peoples mind about our (brain ailment) I do know that my wife and I have set aside a weekend visit each year to spend with her brother retired special forces 101st airborne irac war vet with ptsd. We spend a weekend wandering through antique shops close to his home, doing as much with him as he can stand. This past visit he and I functioned on a very similar level. I have found a new understanding of his physical situation now that I have experienced symptoms paralleling his. Forgive me if I sound as though I am diminishing his situation but the symptoms we experience are a lot alike. I did not realize how much I minimized his physical condition until experiencing my own symptoms.
Don't be to hard on those around you who don't understand yet, they want to, they don't know how, they haven't processed how things will change for them in their relationship with you yet. All you can do with family is share your experiences take them along on the journey; to the dr visits, let them see the literature that describes our situation, join the support group close to your location and take them along to meet and greet. They need to learn for themselves what is happening to you. Our ability to describe what is happening is not easy to figure out because we don't have it figured out ourselves.
When you can go all out go until you drop let them see the old you is still there and they may be more tolerant of the new you who needs some time to recover and regroup. Be as jolly as you can, a part of this thing we have going on is depression. I did not see it in myself until 2 months into diary entries. As I look back I can read the depression in my own hand writing, didn't see it when I was recording symptoms but definitely after I looked at them as a whole. It is hard to look at our own emotional state and see how it effects those around us. I have an inlaw who is clinically depressed and I always used to say she could suck the life out of the room when she walked in. Took me some time to see it in myself. I am ashamed at my response to her condition now.
These new feelings we have take some time to get used to fatigue, dizziness, wobbly and unsure in our steps, noise intolerance, change in hearing perception, headache, nausea, reduced concentration level, memory issues and so many unique to each of us. How much is physically tied to the AN tumor, how much is tied to the surgery, how much is tied to our emotional reaction to our diagnosis, who can say. But they are all real and effect us in various degrees. It takes time to get to know them, accept them and learn to live with them.
One good thing..... we have lots of time ahead of us to figure it all out. We are not at the end, we have just hit a pot hole and now we got a front end alignment problem, we just have to work it out. I know it is easier to say it than live it, please know we understand what is happening to you. And no one here is minimizing your experience. Yes you have had brain surgery, it has effected you physically and the comparison to someone with the physical appearance of brain surgery is only comforting to those who are looking at us and saying poor dear.
I take comfort in saying it isn't cancer and I am still functioning close to normal. I would rather spend my days looking out on the world than taking stock of all that I lost. Good luck with your journey, keep us in the loop as you continue on your journey, we all learn from each other how to live with our tumors and appreciate hearing how others have dealt with theirs. Hope these words encourage you as so many here have encouraged me.
