Wednesday, May 26, 2010


What does a "community" consist of? Is it a group of people that meets in a building? Is it a subdivision filled with homes? What of those within those houses? How about those that are home-bound, so they make a community of their own by reaching out and creating an online "community," a web group of people with the same disease? It is hard to feel I am the only person who is trapped at home who exists every day just to have a couple dozen seizures, munch on something, pet my pups, and make sure my couch/blankets/heating pads don't move. If I can, I blog in this, my journal, which serves to distract myself from the pain of the day, so I can keep myself away from all the bottles of narcotics just a little bit longer until I'm due for my next dose. It's not like I have any other way to spend my time!

However, apparently by not being in physical attendance, I have chosen to "walk away" from the church community. I think it is incredibly unfair to say I was only a part of it when I was physically there, giving of myself. I guess every time I was in the hospital for the 20 surgeries and other random issues, I wasn't part of it either. I guess I have a lot of nerve getting sick! My husband went on Sundays alone for over a year, until his work schedule no longer allows; when he went and was asked about me and what could be done to help, he said just visit, call or email, please! Dozens agreed to do so, but guess how many did so? You got it. When he came home each time and told me who would be calling me or messaging me, I could hardly wait. Hours, days, weeks passed. Those who stare at the ceiling all day know how very long, how when we go to bed each night not having spoken to a soul, years have gone by, the heart broken a little more each sunset, but holding onto hope that when the sun comes up again someone will follow through on their word.

Is it any wonder that 1/3 of those stuck at home suffer from suicidal ideation, and those with chronic disease are 20 times more likely to commit suicide?

I care for the people in attendance, but there is a tremendous amount of hurt by the ones who have been in a leadership position over the years, rather like a clique of sorts. It was a leader who told me she knows she is wrong to not keep in contact with me but it's easier for her because she doesn't like to see what this disease does to me, so she chooses to ignore me, knowing it's wrong. It was a leader who after having us in their group for two months and meeting in our home weekly, said they were bending over backward for us--not sure having a rotation in our home is bending over backward, but that statement was horrendously painful. After joining an online community full of these leaders, at their urging so they could keep up with my situation--though they wouldn't discuss any of it when I tried to talk about it there--both of us would bring up situations and one of the main leaders chastised us for expecting us for him to keep up because he knows SO many people online and things to do at the online group. The first thing that came to mind was how when I said that to him a few years back, he told me I needed to shut off the computer b/c it's taking time away from God if there's that much on there I'm paying attention to. Maybe that goes both ways if if members of the online community can't be heard. (I did leave the online group after a couple months, because when I tried to discuss heavy stuff, it was ignored. What's the point of being there if the few people that asked me to come there don't even acknowledge I'm alive? No one there noticed I left anyway, and I am not surprised.)

So, are the home-bound no longer members of the community because they can't physically participate?

I think the hardest part of all this is the sudden realization that I was not actually part of the community in the first place. I was never part of the "in" crowd. The groups have been the same since I started 6 years ago. I am tired of always trying to keep everyone happy. No time for it. I am at peace with myself. I am not the one who initiated and sent out some really hateful stuff to people in February, which we left alone as long as we could but after growing increasingly confused and concerned about the odd conflicting information sent to two different people, had to check in and find out what the truth really was because it made a huge difference in our family. That is for that person to deal with and only she knows if she can live with what she responded with or not. That's between her and God, not me.

As for that topic, I'm done. It's not worth my health. There is a fantastic quote from the movie The Doctor:

June: My disease, I see it giving me certain freedoms I never allowed myself.
Jack: Yeah, like being incredibly hostile?
June: Like being honest and expecting people around me to do the same.

As for what impacts my daily life, how I live sleep and breathe, I still have these seizures every single day. NY should receive my imaging from CT scan #54 within a week, then a week or so for some answers as to what specifically I did. Those of us that have seen it have all the same areas of concern, bends in the rods, vertebrae that appear fractured, on top of already knowing they've all spit off a bunch of bone spurs and are all herniated. (I can't help but not understand how people can bother going to PT for one or two herniated discs. All of mine are. Every. Single. One. And I'm going about my life. But I've known so many people in the "normal" world who go running to the dr wanting help and therapy for one or two bulging discs. Good Lord I'd climb Mt. Everest if I that was me!) My scapula feels better than at first at least, and I'm grateful for that.

Pain prevents me from doing a lot of stuff so it's a constant battle to get things done, right down to taking a shower. How am I supposed to be a member of any community when I can't even take a shower more than once every week and a half? It's humiliating.

I have to go use up 1/2 of today's spoons putting wet clothes in the dryer, and the other 1/2 cleaning up what my Border Terrier is vomiting up right now.

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