To Begin means also To End

This week I've been thinking a lot about life ending. I know that sounds really morbid, and at times it is, but it may not be what you think. It is true that people can, and do, die from Lyme. I would by lying if I said this wasn't a very real concern for me. Even when it's not the disease that kills, there is a tragically high rate of suicide among Lyme sufferers. The emotional and psychological effects of this disease are unlike any other illness I've heard of. To be plagued by deepest depression and anxiety on a regular basis, knowing that even with treatment it will be years before you ever really get your life back, seeing all the constant pain and worry you are causing to your family and others who care for you--honestly it's no wonder to me that many can't handle it all. I know with confidence that if it weren't for my family, friends, and most importantly my faith, I would not have made it this far. I do not believe I could ever go so far as to take my own life, but again, I would be lying if I said the thought has never crossed my mind.

However, this week I've been thinking more about other ways that life can end. Or perhaps more accurately, ways that it can change, because oftentimes changes feel like ends. As you all know, I recently began a major change in my treatment--one that is likely to cause a lot of difficult and painful reactions, which are the signs that it is working. There are, of course, two sides to this coin, and my last post focused on the upside--the fact that the treatment is working and I can make some real progress in the fight against this disease. This week, as I've found myself physically bedridden, emotionally falling apart, and psychologically terrified, I can't help but recognize the flipside--the fact that ready or not I am entering another new phase of life and it isn't going to be a pleasant one.

Yesterday I literally cried for almost 5 hours straight. I know there were a lot of things coming into play--stress, hunger, sleep deprivation, and my ever-changing hormone levels--but the only thing I could think about was how much I felt like my life is ending. I know it sounds over-dramatic, but just go with me for a minute. For the last 5 years I have been fighting this constant battle between allowing myself enough normalcy (in the form of having friends, attending church, trying to work, etc) to be able to feel human, and recognizing that I'm just not able to sustain the kind of schedule and interactions that I need to do so. I can't really invest in relationships well when I can't attend the parties and events, coordinate the get-togethers, or even have people come to me, especially on days when I can't stand up much less drive, or move my mouth much less have a conversation. I can't sustain a job, not a real one anyway, when I can't see well enough to drive to work half the time, can't stand long enough to put clothes on oftentimes, or simply can't remember what day or time it is. But despite the fact that I know these activities are slightly out of reach for me right now, I can't seem to help myself from wanting them, and being willing to try to get them anyway. And amazingly enough, for brief periods of time, it works.

Despite all the crises and complications, within the last few months I started to feel an amazing semblance of normalcy creeping into my life. I had a church family, people who care about and will go out of their way to be a part of my life sometimes. I have had a job that, even though my hours were sporadic and short-lived, was willing to work around my chaotic and maddening lifestyle so that for brief periods of time I could feel like I did something that mattered. I had an apartment with a year-long lease--the longest I have lived in any one place since I left for college--where it was worth the bother to decorate and make it feel like home. It is a bizarre existence certainly, when it is constantly interrupted by the inevitable "bad days" and the medications and diet restrictions and absurd sleep patterns, but at least it felt like mine. And suddenly I feel it all slipping away.

Now, even on the "good" days I find my vision is blurry almost constantly. I can barely even watch tv anymore because I simply can't see it. My arms and legs are in constant pain that gets worse whenever I sit or stand for more than a few minutes at a time. It takes enormous effort to walk to the kitchen to feed myself and I have to spend at least a couple hours trying to think of what I can eat beforehand because I can't hold a thought in my head long enough to process options or decisions of any kind. The "bad" days add on seizures, paralysis, muscle spasms, blackouts, and a constant sense of having no idea where I am or what is going on around me. I'm still clinging to all those things that I care so much about, but I am facing the reality that many of them simply aren't an option anymore. My job has to end--I'm praying I can muster a few more shifts since tax season ends in 2 weeks anyway, but I'm not counting on it. The long list of people that I've desperately wanted to spend more time with will have to wait. At best I might be able to muster a coffee date once a month or so on my rare good days (as long as they are willing to drive and put up with my intense scatterbrainedness) but more than that would be impressive. I don't know if I'll be able to keep up with my small group, my church attendance, etc. Even my marriage has a completely different dynamic; my husband returns to being a caretaker first, a companion second, and he's lucky when I can muster the ability to go out of my way for his needs. The life I knew, the life I had started to love so much, is ending.

I know that one thing ending means another new beginning, but that is small comfort when the new thing mostly sucks. :-P And I know that this is temporary; eventually all this pain will dissipate and I will be better than ever, and I have to believe that at that point it will all be worth it, otherwise I wouldn't being doing this. Still, it's just not fair. I shouldn't have to be forced to go back to a life with few friends, no hobbies, and barely any sense of being human. And what makes it that much worse is recognizing how many times I've been here before. Every time I try to reclaim even the smallest bits of the kind of life I miss so much, it's only a matter of time before it all comes crashing down again.

But maybe this is just what life is. I talked so much in my last post about the "seasons" of life, it would be foolish of me not to recognize that change is just a part of it. Sometimes the change is painful. Sometimes it brings joy that makes it all worth it. At best my life is just a more extreme picture of the same kinds of changes that everyone faces at some times or others. Still, it makes me want to proclaim with wild vehemence to enjoy the life you have because nothing is permanent!!! Whether it is cut short by death or illness or just the voice of God telling you it's time for something new, life is ultimately governed by powers beyond our control and it would be a real shame to fail to enjoy the good things while they last.

Death is a part of life. And just like the hope of Rebirth, it also proves how valuable the living really is. So LIVE, my dear friends, for my sake if nothing else. Take time to notice the little things that make you human, that make life worth the hassle. Spend time with one another and see how powerful it is to be able to share yourself with another. You just never know when life as you know it is going to change.