Post Soundtrack: Ow by Stephan Moccio
I have wanted to work on this post (or series of posts) for some time. Originally I intecded to title it as "Secret Fears" since they aren't things I prefer to discuss, even with my husband. However, upon reflection, I realized that these are not likely to be so secret after all. Some of them make a lot of sense, and perhaps others have had an easier time discussing them with their loved ones. Either way, I'd like to list things I am very fearful of in relation to my Lupus, and explain how I feel about them and why, if possible. So deep breath, here goes.
This may seem like an obvious fear, for me it isn't about what you may first assume. Yes, I'm afraid of dying. Yes, I'd rather avoid it. But that isn't my not-so-secret fear. My fear here is of leaving my loved ones alone and bereft. It would break my husband's heart to lose me, and would cause the sort of grief to my child that no mother would wish upon their beloved children. I am afraid of my son being scarred by my death. I am afraid of how deeply pained my husband would be to face funeral arrangements for me. I am afraid of the bills I might leave behind, not at all the sort of reminders I want him to have to tackle in the days, months, or years after I'm gone. I am afraid of dying because of the grief it would cause my family and friends.
This is a bit more visceral and instinctual. I am afraid of the hospital because I fear I will one fateful day end up in them. I am afraid of the dire straits I'd be in that would lead me to be hospitalized. I have this looming dread and certainty that I will end up in the ER at least some day. I scare myself with imaginings of the catastrophic series of events that might lead me there. I still go to the ER or hospital to visit friends, and I am able to shake the creeping feeling of anxiety and worry for myself, but it almost always is there when I first set foot inside. Think of it like how we all felt about the principal's office when we were in elementary school. Even if we had good and legitimate reasons to be in the front office or (gasp) the principal's office, it was a place we cringed at having to go near. It also is related to the first fear, that of dying, because after all, if something went so wrong as to land me in the hospital, that might just be the time it kills me.
3. Lingering Suffering
I have this lingering dread when I hurt that I never will stop that particular round of pain. When I flare, I worry that life will be like that all the time. It can make it nearly impossible to be objective about my state over extended periods of time. Time slows when I hurt, so the idea of that stretching on and on... it can be nearly unbearable. This is part of why I don't like the "buck up and live life" attitude. Sometimes it just isn't possible to sludge through both hurting and despairing to act happy and well-adjusted as some folks seem to think I should. Not when the pain drags on, and all I can see before me is more of the same. My spirit quails at the very thought. Thankfully I don't have to face that, and there always has been a reprieve of some sort. I simply am afraid that one day there won't be.
This is a two-edged sword. I am both afraid of and grateful for my medicines. I am fearful of the new medications I may be put on, and hopeful too. I am afraid of side-effects, some of which could be quite devastating. (I have heard of some folks whose bodies reacted violently to some of these drugs.) I am very much afraid it won't work. I fear it won't work well enough. I dislike taking so many pills, and am afraid of shots and infusions. I don't like needles at all, really, and IVs have never gotten along well with my veins. Taking chemo drugs is scary all by itself, truthfully. One never wakes up one day and suddenly think, "This time next year, I'll be taking over fifty pills a week." It just isn't something you want to see for your future.
5. Being Alone
As much as I fear leaving my husband alone, I also fear being left on my own to face this disease by myself. I don't feel like I could do it. The practical side of me insists I'd find a way, of course, but my fears are not generally very practical in nature. They are seated in my heart, which aches with the idea of dealing with all this alone. I am so very deeply grateful for my husband and all the support, love, and understanding he provides. Without that, I would be lost. Truly. I need that strength, courage, solace, and support. Without it, I would surely fall into an unending pit of despair. Which brings me to my next fear.
This is one very real, very terrifying yawning depth to which I can easily see myself falling. It goes beyond unhappiness and beyond logical fears in regards to pain. It is its own reality, its own world of darkness. Just imagine, for a moment, one of the worst moments of your life. It doesn't matter whether it was an emotional one, a physical one, something you saw happen to someone else or something that happened to you personally. Just for a moment hold that event in your mind. Now imagine that event happening for the rest of your life. That same thing, to varying degrees, over and over. For a few heartbeats, know deep down that you will endure that until the day you die. That same wrenching, painful, despairing, blindingly difficult event, stretching for the rest of your life. Sometimes that is how it feels to face a life-long disease. Some days it is softer, less prevalent, but it is always there. That sort of knowledge tugs at a person's spirit, leadens the heart, saps the energy, causes a pain all its own. It's unspeakably hard. That is why I fear depression. For me, it could very well become reality if I can't find the strength to haul myself out of that dark pit and press on.
These are by no means the only fears I wrestle with. I know they are terribly dark and uncomfortable, but they are my life, they are what I face and move past, or try to. Perhaps you face these same fears. Perhaps someone you know is struggling with them. Love, compassion, sympathy, understanding... these are things that help combat such difficulties. It can't be done alone. Love those close to you. Give to them these gifts to help them along. Accept such gifts, for we all have fears we must overcome.