"If you're going through hell, you've got to just keep on going"

When I was a little girl, an adult of the family once told me "If you're going through hell, you've got to just keep on going, If you stop dead in your tracks, that is where you'll stay." I remembered this simple, yet great, advice throughout my life, and I can't remember much from childhood except for pain of course, so that should say a lot about how dear to my heart I held these words. I don't know where I'd be right now if those words were never spoken to me. I called upon these words many, many times for strength when I wanted nothing more than to just give up and well, stop dead in my tracks! I must have been not a day older than 4 years old when I started to tell my mother of the pain in my finger joints when I bent them or scratched my head. I remember very vividly telling her over and over and over again. Then came kindergarten, and not being able to sit "criss-cross-apple-sauce"/ "Indian-style" on the circular rug during story time. I felt so different, so weird. Like an alien. I often wondered on the bus to school in the mornings: "Will the teacher call my Mom because I refuse to sit on the rug? Will the teacher yell at me? Will she think i just want attention? And will all the other kids think i'm just a big weirdo?" Thoughts like these ones came into my head daily. Still, though, I refused to sit this way. It literally made me want to scream with my legs crossed, and if I did happen to manage sitting like that for anything over a few minutes, I had extreme trouble uncrossing them and standing back up again. Watching all of the other children, jump up with ease, no problem at all, no holding back tears ready to stream heavily down their faces as I did daily, I felt it was just so unfair. I felt like an old lady. I was 5! No child deserves to go through that, non the less adults!  I continued to warn my mother that something very, very wrong had happened to my body and that I could tell it wasn't going to stop. And as I would tell her these things, I would start to cry and look into her big, brown eyes. I could see it hurt her that I hurt, and I could see she really didn't have a damn clue of what to do about it. My father wouldn't pay for me to see a DR., and when he finally did years later, the DR.'s would simply chalk it up to "normal growing pains that most children experience." time and time again! No blood tests, no examinations, nothing. I could only imagine what most of these doctors throughout my life were really thinking! "She must be so starved of attention!" I can't even begin to tell you just how many people have actually said things like that to me later on in my life. And I certainly can't begin to tell you just how many people would take it a step further to give me what they thought was amazing advice, the secrets that nobody else knew or realized, things like "Exercise more", "Eat better", "You just aren't getting enough sleep", "Take care of your body and it will take care of you in return", "If you think negative, of course you're going to feel negative! Think and be positive!", Or "You just need to change your mind set and stop forcing yourself to believe you're sick! The mind is tricky, and it's stronger than you think." And then there was always those people who simply just said something along the lines of  "Oh, stop your whining, already! Give me a damn break! You are FINE!" If only they knew. And if only I could just make myself "fine" again. And don't even get me started on gym class and the gym instructors! So, here comes middle school and I am so exhausted, so tired of pretending to be fine that I convince myself that I just don't need school anymore. It's doing me worse, not better, and it isn't serving me in anyway, so why keep going? I can't stay awake no matter how much sleep i get, and when i'm not sleeping at my desk I can't sit still and i'm constantly squirming and switching positions to stop my body from aching and throbbing, and I can't even begin to focus on and of my school work non the less homework because i'm a complete physical, mental, emotional, spiritual wreck! Now add the teachers criticism and misunderstandings, add the teachers bad attitudes towards me for feeling that i'm just lazy or disobedient, add the other students staring at me like a freak and judging me, add the students who bullied me non stop for simply being different than them, add having hardly any friends ever due to the fact I just couldn't keep up with them, add all the non existent support from family, add my father telling me to stop whining all of the time as if i were only making it up in my head, add the constant and weird physical pain and other weird ailments that popped up all over the place (which in hindsight seemed and looked totally unrelated to whatever it was that was causing me to be so weak, tired, and pained), and then, add the ever growing daily amounts of anxiety and the ever growing fog i was stumbling through (which later i learned was called "brain fog"), and finally, add my memory which was growing poorer and poorer by the day. My childhood was one big mess or fear, resentment, loneliness, hopelessness, depression, tears, pain, and fatigue. I must have been 16 when I finally realized my brain had been totally effected- I was walking up the staircase to our apartment, as I did when I had to, and suddenly just "forgot" for a lack of better word, how to simply lift my foot and place it on the step! I must have sat there for what seemed like a good 5 minutes just trying to figure out how to climb stairs again. It felt as if I were a toddler and it was my first time ever doing it! When I finally remembered, I was in shock and didn't understand what just happened. I went to tell my mother, and I could see this look in her eyes, on her face, that screamed she knew what was wrong with me. And I think by then, as did I, I just wasn't ready to accept it yet. See, my older brother was diagnosed with Lyme disease when he was not even 16 years old, and they estimated he contracted it when he was very young, just as they think I did. (My guess is that we both got it around the same time, but when he was 16 I was still only 10 or so, so they actually caught his sooner than they caught mine in the amount of how many years after we were bitten.) So, my mother was pretty familiar with the symptoms of Lyme by now, because of what she went through with my brother for years. She witnessed his decline, and multiple treatments, and she still hates remembering the IV treatments. It was just so rough, and my brother was bed-ridden for quite a long time. She must have felt so helpless as a mother through those horrible years. In all actuality, maybe she also didn't want to admit that's what was most likely wrong with me, in fear of what was to come. It makes perfect sense. Who wants to watch not only one child, but two, suffer like that for years upon years, with the possibility that they'll never even really get better? What mother would want to admit that their last glimmer of hope of a good life for their children is dead and gone? I know I certainly wouldn't. So, although sometimes I find it easy to resent her for not trying to find me a better doctor sooner or for not pushing these doctors to test me, I still have to consider what she was going through and the pain she must have felt from it all. I have to give her credit, too. She is a wonderful mother, regardless of whatever mistakes she has made along the way. We all make mistakes.   ......To Be Continued Later...

No white flag

I have been slowly but surely working my way through Ally Hilfiger's nearly new book on her lifetime experience with Lyme Disease and it is increasingly empowering me and inspiring me to write more about my own ongoing experience with this retched disease as well as my past experiences with it. I want to write everyday. I really, really wish I had the energy and focus to do so. My blood counts are lowering once again, though, and I am fatigued more than ever.. Again.. It never ends! Will it ever end... ? I feel so pushed down, and stomped on, by something so small, so tiny, something that can not even be seen by the naked human eye. It is astounding! Really honestly incredible. But otherwise absolutely terrible. I feel as though I have nobody and nobody really cares enough to attempt understanding. My mother is the only one I have who doesn't seem increasingly bothered or annoyed whenever I speak of my struggles or pain. I just want, I just long, for somebody to hold me and tell me "It's going to be OK, Lys. You're going to be OK; We are going to be OK and we are going to keep pushing forward, together." Is this too much to ask for? Is that too big of a damn request? I push and I push and I... You guessed it: PUSH. I've still yet to rise my white flag and I don't want to. But I'm so damn tired! I'm getting too tired to go it alone. I'm getting too tired to help myself, help the others around me to not ever ask for help. I feel as though maybe I am still just too undeserving and unworthy to ask for help. It would take too much of their precious energy and time, and it would just be too much work. I would just become an even bigger burden, just another heavy weight put upon their shoulders to carry along with their own baggage!.... I think it's completely and utterly sick that this is how I think and feel about it all, actually. And it would almost probably sicken me right to death if I were to ever find out that this is how other people actually do think or feel about it all! I don't think I could handle it, non the less stomach it... Maybe this is just another useless rant of mine. Well, at least to anybody but me. It helps, a lot. I really should be doing more of this writing and way more often. I'm going to start attending to this spiritual, emotional, mental necessity of mine, though. I really will. I'll set aside at least a half hour a day to just get it all out. To just pour every last drop of desperation and hopelessness out of my poor mind, body and soul! But do you know what sometimes is even better than putting pen to paper or fingers to keys? Speaking it. To actually have somebody who cares enough to sit and listen, and let you fall apart right before their eyes, knowing they can't do a thing to save you except to just stay still, in the moment, and REALLY listen. That's so beautiful, to find somebody willing to. Somebody to reassure you that you are not indeed crazy or off your rocker, (Well, at least not as much as you think) but that you are a warrior. A soldier. Strong, and powerful! Unwilling to accept that you are or one day will be defeated by this! And this is a prime example of one of the many reasons I feel that us Lyme sufferers never be fucked with! What do we really have to lose? If we really wanted to, or felt reason to, we could pain you like you wouldn't believe. You see, we are survivors, warriors, soldiers, as I've mentioned above already. We have and continue to endure pain that the "average Joe" (so to speak) couldn't hardly imagine or fathom. Pain and suffering is our day job. We have almost an unlimited amount of anger, frustration, and desperation pent up beneath our surface and we are ready to explode at any second! And besides, what do we have to fear? Most of us have been through our very own worst nightmares for years upon years. And if there's anything we've learned along the way it is this: Life goes on. We will be OK. We will manage, and keep fighting. No matter what happens and how bad we think it is, we still have today and right now that is good enough. But anyway, let me stop myself because i think i'm digging a little too deep here. I tend to do that often, actually. I just can't help myself in the moment of it. What I am really meaning to say is: Don't give up. I know i'm not ready to just yet and I don't think I'll ever be.  I hope not. Because even after everybody around me has long abandoned me or pushed me away because they couldn't handle the pressure, I'll still have one person on my side! And that's me. 

To walk in my shoes

Today is a brand new day. I know this because outside the rain is busy washing away all my hurt, shame, and misery from my yesterday. Besides that conrete proof, I am doing this thing called "Blogging". I haven't blogged in years and the thought of failing at it is frightening me. I am slowly starting to realize, though, that I cannot fail at this. It isn't possible to fail because I'm doing this for me. If not a single other set of eyes see this but mine for as long as its here I won't be upset. I'm doing this for my health. There is something very, incredibly healing about writing. Everything that I wish to say but haven't or couldn't can flow out of me like there's no tomorrow and it feels so...Precious. The truth is I would have done this a lot sooner but I have a tendency to put things off. Hours, days, months... Years, at a time. It makes me sick to my stomach to know this is what I've become. But Lyme Disease will do that. It will seize and destroy. It will control every last inch of you, and all that you are. It will rein over you and laugh in your face. It will be prominent in every last little aspect of your life. It will day after day, try to take the last of you; what's left of you. It will steal your independence, your freedom, your perspective of life. So quickly will any positive be taken away, and sooner than later negativity moves on in. And it all happens so quickly, you wont even know what hit you non the less where your life and the old you has gone. Or in some cases, where they are hiding. So, I've learned over the years to become a soldier, and to fight for what makes me, me. Or at least what's left of me. I am at battle. A constant battle at that. And every ounce of power, of territory, that I gain over the enemy, is usually to be won back ten fold soon after my victory. Sometimes I lay on my bedroom floor crying, paralyzed in agony, thinking: "What is this life?". Other times I find paper and pen, or in this case my phone, and create beautiful words. Pain filled, tired words. Angry words. Happy words. It doesn't matter. Because its all beautiful and valid to me once I can see it and read it. There is always so much I have to say. And there is always not so many people around to hear it or care. Im learning to accept that there may never be anybody to shelter me and cry with me more than I. Nobody to listen to me and really Hear me, more than I. Nobody in my immediate world to understand me like I do. Nobody who will truthfully take the time out to even try. Sometimes, I categorize even my boyfriend, the closest one to me, in this category. And as much as I don't like it, I need to accept it. He has his own life, his own problems. I am stuck and he is not. And that isn't his fault. I am realizing that Its ok to be angry at it, the situation, but not at him, the person. He doesn't understand why I am clingy and needy and sometimes so small and that's OK because he will potentially never fully understand something he has never been through.  There is his normal and there is my normal, and I think that all I can really hope to do is to someday build a bridge between the two of our normals, connecting us, and freeing us both from the others criticism and judgment. Until then, though, I must nap. For napping helps me to keep my sanity  these days!