I have recently been diagnosed with a joint hypermobility syndrome (the geneticist refused to diagnose me with EDS, which I suspect that I have... I also suspect that she didn't know what she was doing, as she had to have a print off of EDS in front of her to even talk to me, and she only had the Classical EDS symptoms printed off... but that's another post). I am somewhat glad, because I now have a medical reason why everything is so "loose", and why my ankle will sometimes sublux when I just walk, and why everything, especially my joints, always hurt. I wasn't really given anything to do or take to help with the symptoms, except to avoid movements that hurt (gee... thanks, every movement hurts, even something like playing the piano right now is excrutiating, and I don't want to become practically paralyzed to follow those order! Next doctor, please!). Since I'm not really impressed with this doctor, I am looking to see another one... I hope to not have to travel much out of state, but it looks like I might need to make the 10 or so hour trip to Baltimore to see an EDS specialist.
Ok, enough about the hypermobility. So, the past few days have been a bit of a pity party for me. I have been really angry and just emotionally touchier than normal... So much so that earlier I nearly keyed someone's car at school just because they were parked in a handicap spot without a tag. I didn't key their car (even though I REALLY wanted to). I did tell security about it, and they hopefully took care of it... or at least the nearest towing company did. Anyways, I digress. After the past few days of negative energy and emotion, I think that I have come to a realization. I am in mourning, yes, but what am I mourning? I am mourning a perception. I have always perceived that my life, and my abilities, would be something different, something "better" (for lack of a better word). But instead, I have been dealt the double whammy of hypermobility syndrome and POTS that often leaves all of my reserves extremely exhausted, to the point of needing to sleep all day just to make it being awake for 6-7 hours the next day, and I hurt so much all of the time that I try to sleep just to get away from the pain.
My perception of myself, and my life, was one filled with great adventures and of greatness, at least my definition of greatness. The adventures? Going on a cheese, wine and pilgramage tour of France and Italy, hiking one some of the most beautiful and hardest trails in the area, and in the country. Taking a road trip across the country in an RV.... all of these, at least right now, completely impossible. And the greatness? Becoming one of the most popular classical and broadway singers ever (more so than Sarah Brightman or Mandy Patinkin). Of doing one BIG THING that would save the world (from what, you ask? I never got that far... I just wanted to save the world). Of doing big huge acts of charity. Again, all of these at this point impossible.
And that's where my latest realization (or rediscovering of St. Therese) has come from. First, it's not really my life that has changed... God, who is all knowing and all powerful, has planned out my life from the time of my conception (perhaps earlier). While I don't know the specific plan for all of my suffering at this point, I have faith and trust that there is a point and that offering that up to Him can be perhaps one of the greatest offerings. My life is going exactly how it is meant to go, of how it was planned to go. Yes, I can refuse to follow that plan, but is it really going to make me not be sick? And will I really be happy doing things my own way (from previous experience, I can say ABSOLUTELY NOT!!!)? Sometimes, truth (in this case, realizing the death of my previous perceptions) hurts for awhile, but at least that's a pain that tends to diminish over time. Or so it seems to have somewhat even from the very first raw moments of those perceptions being ripped away. Perhaps it has taken me longer that some others for me to reach this point, but I have reached it now. Just knowing myself, though, this is probably going to be a process that I'll go through again, and again, and again. That's OK, though, because no one is expecting (even me) perfection with this.
To go back to St. Therese, perhaps my mission in life is not to do the great big and very visible deeds... but to do the smallest things with great love--great love for God, great love for my fellow human beings, and even great love for myself from time to time. As I have already been saying, "Do what you can when you can, and if you can't, offer it up!" While I might not be able to stand in front of an abortuary for hours while praying, I can offer up my aches and pains, and other symptoms of both illnesses, to the saving of life and for help and hope for the mother. And I might not be able to sing at all times like Cecilia Bertolli (at least outwardly), but I can cultivate an interior life to where I sing God's praises at all times, without ceasing. And I might not be able to go out and see the greatness of God in nature, but I can see the very image and at times, likeness, of God in every created man (and woman ;D), and I can respond to that image by being loving.
I think that I have discovered that I cannot focus on what I can't do, because yes, it is very depressing and discouraging to realize that I have the quality of life of someone with congestive heart failure. Instead, I need to look beyond that, to keep my eyes on the prize, so to speak, and I know that I can make it through in spite of my body, with the help of Christ. One of my friends is a hang glider pilot, and many times he has told me of the importance of focusing his gaze to where he is wanting to take the glider, and to not become a "glider-tourist"... you know, looking around everywhere, because that is a sure way of having an un-pilotable (if that's even a word) glider that could eventually crash. But when his vision is focused on one spot, there is a greater probability that he will reach his desired destination. Please God, may I not become distracted! May I always keep my eyes on You!
