Snow and pain

I love snow, I really do. I think it is beautiful, and I love how falling snow covers the whole earth in silence (but I'm a very big fan of silence). I could write odes upon odes to snow and still not cover my love for it.

However, I am NOT a fan of the resulting pain that sinks deep into my bones and lingers and nearly takes a life of its own. I hate the bitter, hateful, and angry person I become when pain takes hold, and I especially abhor the nasty and mean words that I don't even think twice about flinging upon others. I know pain affects my bp and pulse rate, and I know that it is so difficult to be in control of my actions when I cannot even control the pain that well or get enough blood to my brain so I can actually have some control of my cognition. I think it is the lack of control that scares me the most... and I lash out in anger.

I do this the most when I am the most lax with prayer, and when I fail the most at constantly remembering God's presence. And, well, with the few brain cells I have left, my mind certainly is unable to be left alone, to drown in my own wounded passions. I need to have a constant remembering of Him whose image is imprinted into my very soul. To cooperate with this transformation, of being made into His likeness, because it is only when I am in His likeness am I most truly myself. Pride tries (and manages at times) to convince me otherwise. That I don't need Him, and I can manage by myself. It is the moments of clarity that I begin to realize just how insignificant and small that I am. And yet, because of His love, I am significant... Beautiful paradox!

O Heavenly King, Comforter, Spirit of Truth, Who art everywhere present and fillest all things, Treasury of good things, and Giver of life: come and abide in us, and cleanse us from every sin, and save our souls, O Good One!

Them bones, them bones, them thin bones

My bones are confused. Or very lazy. I don't know. They are like a 70 year old's bones, lack of calcium and all. Perhaps that is why I have had bone pain for so long. Maybe that is why my neck and back are hurting like crazy all of the time. In any case, I am still somewhat shocked (although, with the EDS, should I be surprised?) that I have osteoporosis. Dr. Henderson diagnosed me this past week when I saw him about my other neurological concerns that may or may not be connected with EDS.

I have many other conditions that should concern me more, but perhaps it is the fact that I saw first hand what osteoporosis does to a body (my grandmother had it), especially when one cannot be mobile, it scares me much more, even than Barrett's esophagus, which I know is more than likely to turn into cancer one day.

I also have a Type 0 Chiari. Basically, I have all of the symptoms of an Arnold-Chiari malformation (occipital headache, balance issues, nerve pain and numbness), but my cerebral tonsils don't descend (at least >1mm) past the foramen magnum. This is a particularly controversial type of Chiari, as it seems that at least half of doctors polled don't believe that it is a true condition. These may be the same doctors that believe that the symptoms of Chiari must correspond to the size of the herniation. In any case... I don't know nearly as much as I should about the Type 0 Chiari, so the next few months will be filled with much research. The fact that it is causing symptoms is concern enough for me.

There are a few other things that I feel I should mention right now... but as I am quite unable to hold open my eyes, or hold up my head, I'll end here.

Better lonely with you than without

One of the things that bothers me the most about chronic pain and illness is not the fact that it hurts so much (although I would not classify it as pleasant, either), but the loneliness that often comes when I am dealing with others who are healthy. And most people I come in contact with are not anywhere nearly as sick as I am (and I'm actually very grateful for that, as I would not wish this on my worst enemy!) and don't even have the same frame of reference when it comes to dealing with pain (most people have to be put under to have a dislocation reduced... I self-reduce with no medication multiple times a day). Describing what I'm going through to others, no matter how sympathetic and willing to learn they are, is a bit like trying to teach others a foreign language we don't know, and we ourselves speak different languages.

I had a chance to educate my class yesterday (yes, my evil professor had class the day before Thanksgiving) a bit about what I'm going through. As this is a biological basis of psychology class, we are going over biologically based behaviors, and yesterday was the chapter on movement and balance (and there was great deal of the class dedicated to proprioception), and while I tried my best to describe what it is like to constantly feel like I'm weightless and moving even when I'm perfectly still, and how I bump into door jams and car doors and other people because I can't really tell where they are, and they tried their best to understand and asked very good questions of me yesterday, it was a bit frustrating I feel for both of us. And yet, I am thankful for that frustration in part, because since they don't have that frame of reference, then they don't go through this.

And that helped to add to the loneliness that I have been experiencing a great deal lately. Because no matter how hard I try to explain, and no matter how hard others try to understand, unless they go through daily chronic pain and debilitation, it seems to be an impossible chasm to cross. And even in dealing with others who suffer like I do, since most of the people I know are "cloud based", there still is a gulf to cross.

And then I reflect on the agony in the garden of Gesthemani that Christ suffered. He brings his three closest friends, Sts Peter, James and John (although they were not quite saints then), and tells them, "My soul is sorrowful even unto death: stay you here, and watch with me." And He goes off to pray, a prayer I often use: "Abba, Father, all things are possible to thee: remove this chalice from me; but not what I will, but what thou wilt." Fiat voluntas tuas. Lord, please heal me, make me well, don't let me suffer anymore! You are the Great Physician, you have the power! But, if it is not Your will, then help me to love You all the more, and to bend my will to Yours.

And there appeared to him an angel from heaven, strengthening him. And being in an agony, he prayed the longer. And his sweat became as drops of blood, trickling down upon the ground. Lord, I offer all of my sorrows, my pains, my useless body, my stained soul... I offer it all up to you, in consolation of all of the agony and passion you suffered on my behalf. Let my sufferings be pleasing to you, and send your angels to strengthen me so I may better show Your face to the world, whether I am sick or well.

And then Christ goes back, and He finds his three closest friends asleep! Asleep, even though they were asked to stay with Him and watch. "Couldst thou not watch one hour? Watch ye, and pray that you enter not into temptation. The spirit indeed is willing, but the flesh is weak." And Lord, indeed, how weak is my flesh. So weak indeed, I am ashamed to show you my wounds for healing, but it is only through you that I can find healing, in both body and in soul. It is Your strength that will make perfect my weaknesses.

He goes back, prays again, comes back, finds His friends asleep again. Another hour of prayer, and then, Behold the hour is at hand, and the Son of man shall be betrayed into the hands of sinners. Rise, let us go: behold he is at hand that will betray me.

And so, with that, He rose, and willingly gave Himself up to be crucified for my sake, and for the sake of the whole world. He humbled Himself, wore human flesh, and suffered greatly, to repair the damage that Adam and Eve caused so, so long ago. May I show a tenth of that love to others!