Thursday, June 11, 2009

I believe I have written before about how I feel that others treat me as being nearly paranoid about the heat. Apparently, I am not paranoid enough!

I shall start from the beginning...

I awoke early yesterday because I thought my new plan would be go into work an hour early on Wednesdays and then I could get some significant work accomplished before ducking out to bible study during the lunch hour. The best laid plans. While I did accomplish two important tasks, I also had to spend time with my nebulizer because of one of the smokers at our building. By the time I was ready to go to bible study, I was trembling like a leaf from the drugs.

When I arrived there, I was dropping things right and left and felt as if my shaking was distracting. I did nearly knock over the water pitcher, but one of my fellow studiers caught it and filled my cup. I had left my phone out (on vibrate) so that I could take any calls from my boss and nearly fell over when I hopped up from the table to answer it privately. Frankly, I was ready to go once 1:00 rolled around because I just wanted the haven of my small office where I could be shaky and unsteady in private.

Bible study is not about me. I know that. one gave a second thought about my shaking. I just do not like being a distraction from things that are important, such as studying God's Word.

1:00 rolled around and Pastor was not done. I waited another 5:00 minutes and then decided I should go. I hate leaving early because of the distraction it is, no matter how many times they have all made it clear that I am welcome for any amount of time I can come. I started packing up my things, but it was as if God was standing behind Pastor and waving His arms back and forth. Wait Myrtle. Something you need to hear is coming!

Pastor had emailed me about an experience he had when teaching about baptism at his Spanish bible study where his fill-in interpreters were those of the camp who believe baptism is something you do for God (a public confession of belief) rather than something He does for you (a gift of faith, a gift of salvation, water made powerful/holy by the Spirit and the Word). He wrote:

I realized once again that these folks and I were coming from two entirely different points of view. That objective/subjective difference seems like such a chasm that we're shouting across! But as you know, once you realize the objective nature of grace and God's gifts, it makes all the difference in the world.

That chasm popped up today again.

We tackled verses 25-28 of Psalm 18 and it was the last that sparked the presence of Christ so clearly for me: For You light my lamp; the LORD my God illumines my darkness. This was why I needed to be there at the bible study.

Pastor referred us back to Matthew 5:14-15

You are the light of the world. A city on a hill cannot be hidden, nor does anyone light a lamp and put it under a basket, but on the lampstand, and it gives light to all who are in the house.

"What have you heard about these verses?" Pastor asked. Someone quipped "This little light of mine. I'm gonna let it shine...." I smiled at that. I should have known what was coming with all the discussion of objective/subjective discussions we've had, with his rather resolute believe that the correct interpretation of the bible is that God does for us--we do not do for Him.

The word he used to drive his point home? Bludgeon! Yep, he said that people have been absolutely bludgeoned with those verses as a way to implore them to go out and light their lamps for God, go out and do great things for Him, for if you do not do so then your faith is somehow weak or missing or you failed in being the proper witness for Him. And yet.

And yet.

Pastor pointed out that the passage does not say go out and light your lamp, go out and make it shine brightly. Christ actually said we are the light of the world. We already are. We already are because He has made us so by our faith in Him. Not effort on our part. Something we already are.

I was glad I had come even though it had been a rough morning.

Well, because my boss had a meeting and I would not be working late, I decided to go to the once-a-month prayer service he holds at the nursing home of one of the charter members of the church. I had been curious about it for a while, thinking that I could more likely pop by after work than get myself going on Sunday morning. And it was another opportunity for me to learn what I need to know so that I can partake of the Lord's Supper.

Well, remember the disaster at that church last summer? You know, the neighborhood one B and her family and I checked out? The moment I walked in, I knew it was too hot but didn't want to tell my friend and her husband I had to leave. I didn't want to be the distraction, for the church visit to be all about me. I thought I could endure it. The service was 1.5 hours instead of 1. I didn't make it.

The room at the nursing home did not have the air-conditioning turned on.

Again, because I had had trouble walking all the way from my car across the building to the room and knew I would need help to turn around and leave, I allowed myself to be encouraged to stay and see if the fact the folks in charge were working on getting it turned on would be okay.

It was not.

Pastor and his children worked around me as they set up for the service. People started arriving. I started receding. That is the first indication I have that I am in trouble. Instead of having cotton in my ears, I have cotton all around me. Everything becomes distant as I struggle to hang on. I moved to the floor, knowing what was coming, in a panic because with the service starting, I did not feel free to ask the Pastor to stop everything and haul me out to the rental truck where I could at least try to cool myself down. Spotting me on the floor, he suggested that I try the hallway where it was cooler. Again, I felt horrible about being a distraction and was valiantly trying to hang on to consciousness, so I did not ask then that he get me to the rental truck.

The service got into full swing and I heard nothing, though I tried to follow along. With a mighty wind rushing in my ears, I gave up and lay down, which, of course, was a concern to the seniors who were walking up and down the hall.

One stopped to ask if I needed help and I grabbed at the lifeline, telling her I needed to get to my car and asking if she could just fetch my purse that was sitting on the floor. She was confused about what I was asking her to do. Pastor ended up bringing it out, I think, and I think I insisted he go finish the service.

I do not remember much after that with regard to getting to the truck. Somehow a security person was involved (Pastor's wife told me that). I remember the woman kept plying me with questions. I remember concentrating on putting one foot in front of the other. Somehow I ended up in the back seat with the air-conditioning going full blast.

Heat exacerbates MS symptoms. The only real treatment is to cool the person down and wait. Perhaps, though, I should have found the courage to ask to be carted off to the ER because what followed was horrify and something I had not yet experienced.

Usually, I get weak and disorientated. If I have not gotten to cooled down quickly enough--like last summer--I become a wet noodle, unable to do much of anything.

Lying in the back of the rental car, I managed to call K's mom G to ask if she and her daughter (two drivers) could come and fetch me. She could not. That is about all I remember about being in there until Pastor had me near the house. Because all of my muscles were weak, I couldn't hold my need to go to the bathroom. The pain of trying to do so was excruciating and I tried several times to speak up loud enough for him to hear me. When he finally did, I learned he had taken the beltway and there was no place he could stop. I was trying not to vomit as well from being rolled around on the back seat, unable to gather enough energy to keep myself still.

At the house, he frankly did not seem to understand my wet noodle status and appeared quite impatient with me. In fact, it seemed to me as if he was angry for the rest of the time he was at my house. He struck me across the face a few times when I didn't answer his questions. The slaps, which felt like blows probably felt harder than they were because I hurt so much. I know in my head that was probably the right thing to do, but I cannot understand why people do not get that I have no energy to answer questions, to do anything. I figured if I let go and fainted, both he and his wife would be even more upset with me so hanging on was where I chose to put the little umph I had.

Anyway, I tried to ask him to haul me up out of the back seat, but he didn't understand me. He did manage to get me to the door and up the stairs. That was probably enough of a work out for him to last a week.

His wife was not there yet, so I found the courage to ask him to unzip my skirt, having already decided that some cosmic force was telling me that I should not be trying to go to church anymore. I was so grateful he did. I am so embarrassed he did.

I didn't quite make it all the way on the toilet and ended up falling off, hitting my head on the back of the door and then the tub, and lying on the floor with my underwear around my ankles. I remember being grateful he didn't appear to hear me fall. I do not know how long it was until his wife arrived.

Only. Only because she is a nurse that I found the courage to ask for help. But, even now, even knowing she was willing to come back over this morning to help me further, I feel horrible about how much I asked her to do. Especially since I fear it was a long while before I even focused enough to remember her children were sitting out in their car.

Much of the time she was packed into my microscopic bathroom is a blur. I know at one point I felt my right hip begin to move within the socket (when I am really tired it can pop out). I wanted to scream. I think I managed to mute my cry to just begging her to reposition my leg. The problem was that I started to spasm over much of my body. It was as if all the spasticity I have experienced to date was crammed into one moment. My fingers seemed to be trying to curl the other direction in stiffness. My hands and feet were tingling. I had fire running up and down beneath the skin of my legs. My body kept arching up. The muscles in the front and back of my thighs cramped mercilessly. My vision was blurry. I struggled to speak. I wanted to die. I wanted them both to go home. I was terrified to be left alone. I wanted to go to the hospital. I was frightened to ask because I knew I was be even more alone there.

His wife somehow, rather heroically, got me cleaned up, dressed in my pajamas, positioned safely on the floor, ensconced with pillows, and surrounded by all the things I would need: Epipen, nebulizer (she stared it for me), water, phone, and the bible. Thankfully, I do not remember much of how she managed to do this. I know Pastor was there some of the time. I hope it was after I was dressed.

Everything I have ever written about pain is moot. None of it compares. I have never, ever been in such agony. Already, I fear it happening again. And I am certain the panic that rises within me when I know a place is too warm will be magnified a thousand fold after this.

The spasms stopped sometime around 4:00 AM. For another three hours, I waited and debated calling his wife back for help as she asked me to do if I needed it. I didn't know where my cane was. And even if I could get to the bed, I certainly couldn't make the multiple trips it would require to transfer all the pillows and my asthma medicine.

She came, helped me to the bed, and set me up with all I would need to sleep this off: inhalers, nebulizer, grapes, water, a glass of milk, my computer, a bible, the Book of Concord, the hymnal, and Kashi's medicine (he missed his dose last night--poor dog; he was so frightened he kept trying to squeeze by Pastor's wife to get to me). She also let Kashi out, fed and watered the birds, and set the alarm for me before she left.

Now, only time will make a difference. I am still a wet noodle. The agony of the spasms is gone, but their aftermath is left. I feel as if I ran a marathon last night and if I added 1,001 hip exercises on top of that. My vision is still blurred. The tingling is gone, though. I am hungry, but do not know what do to about eating. I guess that will wait until tomorrow.

I asked his wife if Pastor was mad at me. She said he was only worried. Not that she would lie, but I cannot see how he acted as if one concerned. It felt more like why-don't-you-get-up-off-your-duff-and-stop-this-because-I-don't-need-to-be-saddled-with-your-disaster. I am sure it was necessary, but I cannot believe he hit my face and raised his voice. I think I remember that happening several times. It sure felt like and sounded like anger. I also think there was some argument about my keys. Could I have actually fought with him about them?

She also said that had I not found enough lucidity to tell her where my medications were I would have found myself at the hospital. When I think about how bad off I was, I am actually stunned neither one of them called for an ambulance. If they had, I am certain I would be stuffed full of steriods at this point--something I have been working for a couple of years to avoid because I believe their side-effects are worse than their benefit. They are not a cure, just a balm. I can endure the extended aftermath if I means avoiding having to have take steriods. It makes all her labors to get me in a safe position so she felt comfortable leaving all the greater act of caring knowing they were uncomfortable enough to ignore my preference. Of course, had I been in their shoes, even knowing how I felt, I probably would have made the call.

Ultimately, I should have managed to leave as soon as I walked in the door. I feel as if I brought this whole disaster upon myself. B would probably slug me just for even typing those words, chastising me that it is not I, but the disease. That since I had never experienced this before, I could not have known it would happen. Still, I fear that this might somehow be what happens from now on I get too hot instead of just the confusion and weakness. How can I face such agony again? [Pastor's wife said I looked like I was in labor; really, if labor is like that then all mothers ought to get some sort of medal each time they bring a child into this world.]

I fear that getting so bad will have more permanent consequences rather than just being trapped in my bed battling pain and fatigue and hunger until I am recovered.

And I fear that now I was such a bother, such an effort of work, that the whole welcoming at church and bible study and teaching of doctrine will come to an end.

The worst part of it all? I think I did not come back with the materials I had with me out in the hallway unless they are in the rental truck:
  • My NASB bible that I have had for years and is all marked up so that I can understand what I am reading. It makes my heart sick to think I might have lost this.
  • My notebook that has all my notes from the first bible study (Lutheran--Pastor's) I attended on up until yesterday. All the things I have learned and need written down so I can remember them despite my cheese-hole brain.
  • The small Book of Concord Pastor just gave me so that I could have one ready at hand since it is hard for me to lug around the great study version he gave me that is a bit too heavy for my hands.
  • One of the church's new hymnals/order of worship books.
I know it is not safe for me to try and check the truck, so I just have to wait. Have you noticed yet that I am not good at waiting?

I hate multiple sclerosis.

I hate heat.

I hate that I spent such a horrible night on the floor of my bathroom. Alone.

I hate how lonely I feel in this bed.

I hate that I fear my future instead of trusting that, as He did last night, God will walk before me and behind me and beside me...

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