Happy anniversary

I guess. I don't feel like writing that much today, but I would like to recognize that a year ago on this date, I was finally given a name that, at least in part, helped to explain all of the craziness that has been going in my body for my whole life. A year ago I was diagnosed with POTS.

I guess that happy anniversary is more appropriate than not, as I went from being "it's all in your head" to "there is something actually wrong with you" on that day. Others with dysautonomia probably understand my cautious optimism of "celebrating" such a day.

I guess I'll just end this post with... I'm glad I'm not crazy, and I'm glad that the medical profession, or some individual medical professionals, backs me up.

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.

Christ is Born!

Glorify Him!  May everyone have a very blessed and a very merry Christmas.

Missing life

One of the effects of living in a body that is breaking down well before its time is that I am very, very aware of my own mortality and the fact that my life is extremely finite. I know that my days are numbered, and that even if I were to live an average life span, compared to the whole of history, it is but a drop in the bucket.

While I do mourn that which I will not be able to do, and all that I will miss, I know that my life is not my own. My life belongs to God, and my life is a gift from God. I know that my illnesses are a gift, a beautiful, wonderful and special gift that has been lovingly placed upon me by such a loving God. That my days in bed are NOT wasted time (unless I chose to waste them), and that the sufferings I go through is the means to my own salvation. I am sure, very very sure, that without these thorns in my flesh that I would have NO hope of salvation, that my own will and soul, being unencumbered by such worries, would be even more prone to rebelling against God, and would be more prone to trusting only myself. It is through these thorns that God is working wonderful things in my life, and that He is showing that His grace IS sufficient for me.

Silence

While it is tempting to just leave a "blank" post (and with the topic, it would be appropriate), I suppose I should, as ironic as it might be, speak a few words about silence.

I'm not just talking about turning off the TV, radio, computer, alarms, cell phones, etc... everything that can prove to be such a terrible distraction.  Because, while that would be quiet, and quiet is needed for silence; however, quiet does not always beget silence.  Silence, especially interior silence, is the fertile ground where one goes to meet two people; themselves and God.  It has to be fostered, culled, and repeatedly renewed, day after day.  In repeated exposure to silence, one meets themselves, sometimes for the first time ever.  I know my own journey with it has provided me with many insights about my own weaknesses; the root causes, and the manifestations of them.  It is here, too, that I learn how to overcome such weaknesses, or when that is not possible, how to live with them, how to be a whole person even with such a broken and sinful nature.

My encouragement to others is to find this silence wherever possible, and to embrace it, through the fears, the pains, the discomfort.... because it is through these sufferings do the fruits of joy, peace, and love can grow.  It is through facing one's own demons, to lighten the loads of carrying such burdens can one share freely those fruits with others, and can one more freely life a Christ-like life.

My thorn in the flesh is a gift

I am a Monk fan (that is Adrian Monk, the TV show... although I like the monks with cowls and scapulars, too, of course). So much that I was disturbed that it was ended at the 8th season instead of the 10th season (since 10 is Monk's favorite number... I should get a life!). In any case, one of the most frequently said phrases in the show was used to describe his OCD was "It is a gift, and a curse." It was a gift in that it allowed him to see even the smallest details that lead to the cracking of the case, but it cursed him because of the limiting of his function and the pain that it caused him (maybe not physical, but psychological pain can be just as debilitating).

I know that for most people in society, all suffering is bad and is to be avoided. And well, yes, suffering is painful, unpleasant, and I know that for me, a lot that I have experienced has been as a direct result of my own stupid actions and/or inactions. But not all suffering is bad, including innocent suffering. I can remember how much horror I felt the first time I heard that statement from my priest. He went on to explain that salvation came to the world through suffering (and well, crucifixion was no cakewalk, again, as Fr. has said). He humbled Himself, was born of a human mother, and lived for 33 years on this earth, in human form (I will get further into the hypostatic union, of His full humanity and divinity at the same time later). He lowered Himself to enact the healing of the effects of Adam's and Eve's sin on humanity, and to restore humanity to its original dignity that was lost by our first parents.

Because of His salvific act, He has invited us to be members of His body; some toes, some hands, some hearts, etc, with Him at the head. And because He has called us to pick up our crosses daily and follow and imitate him, that does involve suffering. His own suffering did cover the cost of our sins, but in His own generosity, like He allows humanity to take part in creation (through being able to reproduce), He grants humanity the ability to share in His salvific work, to suffer for the body of Christ, His church. From St. Paul's letter to the Corinthians: "Now I rejoice in what was suffered for you, and I fill up in my flesh what is still lacking in regard to Christ's afflictions, for the sake of his body, which is the church." The few passages before this verse, St. Paul has described how he as been beaten, chained, shipwrecked, half-starved, and endured many other sufferings, many things that I am thankful I do not go through. And yet, even after that, through the grace of God, he was able to pen such a beautiful verse.

And so, I know that I am not worthy of this gift from God, and yet, He is shaping me to be worthy of it, day by day, because of His goodness. And I know that it is through His grace that I am also able to join with St. Paul, and say I am thankful I am able to suffer for the Kingdom.