October 03, 2006

Eventful days

Joe has been very tired these past few days and I don't know if he should be driving me to my doctor's appointment an hour away tomorrow. I may call to cancel or at least to have a phone appointment or insist that I can drive at least part of the way, so long as he "backseat drives" enough to keep me on my toes. I'm scared to drive, but more than that, I'm afraid that were I alone, I might fall asleep at the wheel. I think with Joe in the car I'll be all right, because we can talk and because I can always pull over and have him take the wheel. But I wouldn't dare do it all myself, not yet, not until I know I'm not too sleepy to do so.

I feel so terrible for Joe. He really wants to attend a technology negotiation seminar he signed up for for November in Cambridge, Ma but we are all afraid he won't be able to tolerate the time, that his stamina will flag so easily that he won't enjoy himself or last long enough to get anything out of the conference. Still, he may enjoy just going, just trying, and if so, that'll be enough. I really want to accompany them -- Karen and Joe -- but so far Joe won't let me, fearing that I can't take my medication on my own for four days and nights, which is utterly ridiculous. I've been on the road for the booktour longer than that! But so far, he won't budge...

We went to the pulmonologist the other day, did I write about this already? If so, forgive my repeating myself. He explained that a "soft diaphragm" which is what we've been told Joe has, is when the diaphragm doesn't remain flat along the bottom of the lungs and then pull downwards in an arc to allow the air to flow inward as one takes a breath. Instead, it simply stays where it is, or even bows upwards on inspiration, which is accomplished by the intercostal muscles (those between the ribs) and other chest and back muscles expanding the chest sideways and outward instead of downward. Dr FJ told me that Joe's diaphragm, when he watched it, still moved downward "slightly," which Joe heard as a good sign, but which I took as rather dire. When the diaphragm goes soft suddenly, you die within hours, but as the doctor explained, when it goes gradually, it is like slowly developing anemia, you can get used to it and live by breathing with the other muscles for a longer time. That was a relief, I have to say.

Also, the machines were delivered yesterday, the BiPAP assistive breathing machine, the suction machine for Joe's so far only occasional drooling and a cough machine called an In-Exsufflator. He tried using the BiPAP last night, but because it covers his mouth and nose completely, and he had to cough up phlegm several times during the night, he almost choked, and had to take it off finally. Too bad, because he used it during the day for a while and said it made him feel a lot better. No wonder, as it relieves him of the burden of too much carbon dioxide and allows him to take advantage of the oxygen that is already in the air that gets to his lungs. In other words, pure oxygen would NOT help, because the problem is that he can't get rid of the carbon dioxide, not that he can't get enough oxygen from air. He is getting plenty of oxygen into his lungs, but the carbon dioxide is sitting there, not allowing the oxygen to penetrate.

As for me, well, I have been quite upset by this, but also by the fact that everyone is angry with me, hates me in fact, everyone in the ALS association and at the Clinic, even though all I've done is ask questions on Joe's behalf and try to straighten out things that Joe is confused about. I was very polite and careful about who I e-mailed, I never talked to anyone in person or by phone, but somehow I did the wrong thing and now they hate me, for some reason I'll probably never be told! How do I know? I can tell from the e-mails I'm being sent, their tone, and the words they use...Even though Joe and Karen don't see it, I do. I know how they used to write me, and how differently they write now. It's obvious things have changed and that I'm the one they are blaming...So I go to bed crying, because I just tried to help Joe and now I don't know why they are blaming me and hating me, even though Joe is innocent, and they don't take it out on him, thank god. I just don't know what I did wrong!

I hate myself! I should just stay away from everyone and not bother a soul! I always ruin everything and alienate everybody and eventually they all end up hating me anyway. I am simply poison to all and should have known better than to try personally to help Joe, when personally I can't do anything but hurt people, no matter how hard I try to do the opposite. That's what Satan does by nature: hurt people, do things that make people hate her (who doesn't hate Satan?). I poison people...So I should have anticipated that such would result from any effort of mine, whatever the intention. The road to hell is paved with good intentions after all, isn't that what they say? Next time I'll stay in the background and let Karen negotiate the system and find these things out, pushy as she is. At least she'll get answers, whether or not they'll be useful I can't say, but she'll get answers, and people won't wind up hating her guts or by extension being fed up with Joe. But there won't be a next time, will there? There is only one Joe and I've screwed things up for him enough. I'll just step aside now and hope their hatred for me doesn't affect his treatment.

Posted by pamwagg at October 3, 2006 07:47 PM


Pa, please listen to Kate and Paula and Yaya, all of whom are right-- and Dr. O too, of course. You are neither hated nor evil, but rather reacting to stress and grief. If you were genuinely evil the suspicion that it might be so, were you to entertain it at all, would not cause you the remotest distress. Please believe us . . .


Posted by: Cynthia at October 4, 2006 11:48 PM

Oh my gosh Pam, I don't think anyone can hate you. You are such a kind and sensitive soul. I think all of the stress of Joe's illness may be getting to you.

I wish I knew you well enough to comfort you. All I can say I don't hate you and I don't believe anyone else hates you. You are a wonderful person Pam Wagner and don't let anyone else tell you otherwise. You're an author, poet and my cyber friend. You and Leonard C are the people who have shown me that reading poetry is not just for the educated elite.

Your a good person Pam. You're just going through some very difficult times. I suspect it has a lot to do with Joe's illness and the real possibility of loosing him.

My best to you.


Posted by: yaya at October 4, 2006 05:25 PM

Dearest Feebe,
Well,today's blog is such an echo of everything that goes through my mind day after day,although we are not biological twins, there is no denying that we are twins indeed regarding our identical perception of ourselves as "hated and poisonous"(though clean of slate, eh, what?).While these perceptions on my part are merely typical, when they come from you, they are danger signals. I know from experience when even the hint of self hatred appears, all is not well with you, and you must nip this in the bud ASAP!!! Call Dr. O. Call Lynnie. Call for help now. I hear you, but I cannot help you. Help yourself, my precious amie de la coeur, else you may not be able to don your birthday crown when that wonderful day in November when you came to be begs to be celebrated, as it does every year. Although I know I speak in vain, I'll say it anyway. You are not hated by these people(must I remind you of the "reality check"?), nor are you poison to anyone. Put away my sorrow for a minute, and listen to the voice of reason which I have in abundance when I care to use it. You "Are a man, as other men are",(Shakespeare-A Midsummer Night's Dream) just like everyone else, your brilliance notwithstanding.

With unconditional compassion and love,
the Pot who so often calls the Kettle
black, T3

Posted by: Paula Kirkpatrick at October 4, 2006 05:02 PM

Pamela Spiro Wagner! No one hates you! I haven't known you for long and already I feel love for you. Do not give in to the delusion that you are somehow "Satan's spawn". You are in no way an evil person, if anything you are very considerate. The people at the clinic barely know you and if they responded curtly to you it is their fault and not yours. You are just trying to help a dear friend. I believe it is just the stress of schizophrenia and Joe's declining health that is wearing you down a bit. You must counter the negative with the positive anyway you can. Hopefully the act of writing soothes you and that is good, but that involves mind work. When I get stressed out I do craft work, it's repetitive and meditative and it soothes my mind. Reading is also good. Or watching TV. Just something to give you a break from worrying about Joe. What a shame you don't like to be touched. If I were there I'd be tempted to give you a huge bear hug {{{{{{{BD}}}}}}} Sweet, thoughtful, bright, talented Pammy! Hang in there and try not to get to blown over by insensitive reactions. And know that you are not at fault.

Can't write much right now, but I'll check in tomorrow.

Kate :D

Posted by: Kate K. at October 3, 2006 11:06 PM

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