Where to start?
I haven't felt much like blogging lately, and wrote several posts only to delete them shortly afterwards. I also made this blog private for awhile and then realized that wasn't very fair. Had Holli deleted her blog I never would have stumbled upon it in those dark, dark nights of 2010. If Leah had deleted her blog, I would not have so much information
and a whole community of Fibro sisters. If I had deleted mine I never would have met Alex. Sometimes I feel like what I am sharing on here is insignificant. I wonder if people even read this and I feel overexposed and nervous about sharing so many vulnerable things, but now I understand that all of that doesn't really matter. What matters is sharing what God is doing through my sickness, what He is teaching me, showing me, purging off and out of me. I should never be ashamed of that. How else can I claim this verse?
But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.
2 Corinthians 12:9
It is only when I face my own limitations, my own fears, my own flesh that I can fully know the full extent of His love and mercy spilled into my life.
So much of sickness is self-condemnation. Guilt runs on replay as my limitations take over. I have been asked if I have ever tried to push through it? Yes, everyday. But here's the thing friends, you cannot push through a defunct central nervous system and a compromised immune system. You can't. I do not have the luxury of deciding what is going to affect my brain and my wiring. ALL of it contributes, overwhelms, takes from me. To live in a body that has no filter for what it takes in, to hear every single sound, see every single movement with no sensor to remove what is unnecessary, to live 24;7 in fight or flight... it's not a pretty world folks.
And here is what I realized yesterday as I drove and talked to God. It's big, are you ready for it?
I am not the selfish one.
Can I say that?
Yes, yes I can. After two and a half years of feeling like I am failing everyone around me, letting so many people down, being criticized for my disabilities, having people feed lies into my spirit.... "you've changed," or "you're no fun anymore...." all of it... I felt like the blinders were ripped off in an instant.
This may sting.
I am not the selfish one. They are.
*
self·ish adj \ˈsel-fish\
Definition of SELFISH
1
: concerned excessively or exclusively with oneself : seeking or concentrating on one's own advantage, pleasure, or well-being without regard for others
2
: arising from concern with one's own welfare or advantage in disregard of others
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Do I live that way? The definition of selfish? I had to ask myself that. I definitely have selfish behaviors, selfish moments. I am human after all. I fail daily. I sin without thought, can be stubborn, have fallen into pity many a time.... but selfish? I don't think so. Instead I kill myself oh so slowly by trying to be who I once was. By trying to be the pleasing daughter, sister, auntie, friend. I deny my physical needs more often then I respect them, because I am so busy trying to make everyone else happy.
Isn't that selfish to expect, need, demand from me what I do not have to give away? Isn't it selfish to mock me or roll their eyes because I can't be around a lot of noise or activity? Isn't that rude to me when they literally ignore what I say, or when they step on my fragile boundaries with their heavy boots?
I have to be responsible. I have to be verbal. I have to not give in because I feel oh so bad.
It takes so much more strength to be honest about our own weaknesses.
What is happening now, inside of me, is transformation. More of it. Always. Ever. I have to look at people pleasing tendencies I may have carried my whole life, I have to examine the guilt that rages throughout my being.... only secondary to the guilt I carried for YEARS after I lost my baby all those years ago. I have to face humiliation EVERY single time I need to use a motorized cart at Food Lion, every time I have to mute the television in order to listen to someone talking, every time the clock chimes loud and Aaron mutes the TV. I have to listen to continual criticism and advice about MY sicknesses, my lifestyle.
Here's my glorious realization from yesterday....
I am not the selfish one, the healthies who push me are selfish. They want me to fit a mold I no longer fit into, they want me to be better, they want me to be okay for them. And I can understand that they want what's best for me, they want me to have functional lifestyle, they want me to feel better, they love me and want me to get out of this. But here's the thing: I DIDN'T CHOOSE THIS.
This isn't something that delights me, or something that I seek out. This is something that is happening TO me. I have tried to pretend this isn't going on, I still have huge moments of denial, especially lately where I try to "rise above it" and think that I am not sick, but for the most part, I was an active person....
I mean, I went walking and did pilates, and worked with children and had friends and worked in ministry... this isn't to boast of the things I did, this is to say that lifestyle was far more comparable then staying at home twiddling my thumbs and reading books. I can glean things by staying at home, but the point is that it sucks to be ill. It's not something that's fun, it's not about attention. Who in the world wants attention for being sick?! It's negative attention. Who wants attention for not feeling well and ruining everybody's good time and having limitations? I don't want that. It's disheartening and disgusting to me. I feel like I have to cultivate this strict standard of living for myself so I don't freak out have a flare and all kinds of serious repercussions. And that is why I finally realized that they are the selfish ones. This is not pleasurable by any means. Literally every day I wake up expecting to be my old self, and not even emotionally, just in the physical sense. Let's just concentrate on the physical sense. I am waiting to wake up and have the strength that I did. To be able to manage a staff, to be able to work long, grueling hours, to lift boxes, give children piggy back rides, and go to church and jump up and down and sing and delight in worship, to make friends wherever I go, and go to amusement parks and bungee jumping and sky dive. I am expecting to do those things. To go to the Philippines again and go to Europe. I am expecting all of these things, and that's not bad, but it's quite unrealistic because I am not that same able-bodied person, and I think I have a stigma against my own self being disabled. This is supposed to be the prime of my life. Where I'm past the wandering about that is the 20's, the time where I am established and I'm supposed to be doing things I enjoy... and when people ask me insensitive questions like, "do you want a nanny job?" or "do you want to work?" or "have you tried this or that?" it's like, really people? I am the one dealing with it. I am so pro-active. I am so against being a stigma, being a sickie... and it's to my own detriment. That is reality, because I will forever and a day advise fellow sickies to take care of themselves, but I hold myself to this incredibly high standard. I think a lot of us with Fibro do that. We're the type A's and we give and don't stop, and it becomes this catch 22 because you have this strong willed, emotional, effective person who is completely unable to do the most basic of things sometimes, like lift a plate or have energy to take a shower or go on a walk, and then there's all this funkiness that comes with that, because you want to have the same lifestyle you once had. The scenery is moot. It doesn't matter where you are, it's about health. It's about the fact that we are sick people, and not in the way of "oh pity me, oh feel so bad that Janet is sick and can't do things" and blah, blah, blah... That is not what I mean. That is far from what I want.
It makes me sad that people who know me would look at my life and think that I, in any capacity, am loving this journey. I'm not. I love gleaning new insights that the Lord deposits in my spirit, I love meeting other people going through the same thing, but the physical part of it? There is nothing pleasant to me about staying home every single day, about being the kill joy when someone wants to watch as a movie as a family or have dinner together or conversations, or even to go to Target. I want to be able to just, on my accord, without having to pay homage to my body and the physical ramifications, be able to pick up on a whim and just go and do things.
People are selfish. They have complained about how I am moody or tired, and it's like DUH! Wouldn't you be moody? Are you moody when you have the flu, when you miss work? What about these Facebook statuses I read about your runny nose and your strep throat... you're sitting here bitching (really) and complaining after a day or a couple of days, but you're not in a body that is sick for years with no end in sight. You're not in a body that is always fatigued no matter what you do, that is not replenished by sleep, you are not in a body that works against you every second of every single day. Is there bitterness there?
Yes. There is sometimes. I believe in telling the truth, and a part of that is admitting there is jealousy there. Especially people who take their health for granted. It's annoying, but I also understand because I did too. I took my health for granted, even when I had vertigo and tendinitis or migraines... you just can't comprehend it until you are going through it every day like this. This is hellish in it's own way for anybody who is sick. Anything that is chronic. Anybody who has something so severe, that never leaves you, that is always a barometer for how your life is going to go, its annoying and suffocating and feels like a prison and you have to really, really, really be able to be self-aware. You have to look at your flaws. You have to look at everything basically and you have to weigh your life against whether or not it's worth it to have the pain. And it's not that you don't care about people, it's not that you don't want to be an active part of the community or church or anything, it's the fact that you are sick.
I am sick.
I have to tell myself that because I don't always believe that. I downplay what I'm going through.
I do have to be a little selfish sometimes. I have to protect myself. I have a compromised immune system and a compromised nervous system. I realize that sounds incredibly vast. I wouldn't even know what that means either, but I'm going through it, so I had to do research. The truth is I don't even fully know, there isn't a whole lot of information about Fibro and what causes it and what it is actually doing and I've got these viruses and stuff, so you have to put a lot of time into yourself, into learning, into accommodating the illness. Think about when you have a visitor you aren't all that peachy about it, you clean the bathrooms and get everything ready but it's to accommodate a visitor that you have no desire to even hang out with. That's how it feels to have Fibro. I have no desire to hang out with this thing, no desire to deal with it, no desire to endure it, but I don't have a choice. I have to because it's happening. I've tried denial and mind over matter. You can't ignore your nervous system, that's what makes you you, that's what makes you up. That's your brain and body function, that's Fibromyalgia.
A patient has to do what they need to do, individually, to take care of themselves. And this is my best. I go on walks when I can, I make little tasks for myself. That is how I am being strong and I'll tell you, the spirit is hard to break. With sickness it's easy to break down, and easy to want to give up. I have completely wanted to give up at times, but the thing is, that's a fleeting emotion that comes on the worst of days. The reality is that my spirit IS strong, and the Lord is in me, and I am full of His strength. I get up everyday, and for me, that is a huge thing. I'm not there yet- I haven't fully accepted this, but I'm on my way. I can feel it. Sometimes I cycle through anger and denial and bargaining and depression, and I have to give all of those things, all of the time back to God. Over and over. I have to because that's where my faith lies, where inspiration comes, where my strength comes from... relying completely, wholly, 100% on on the promises of God in my life. And I'm not talking about promises about marriage or worldly issues, I'm talking about the promise that I am paid for, that I am ransomed because of His blood, that I am totally reliant on the one who saved me! It's not about a worldly or temporal vision, it's about an everlasting vision, that this pain, whether I live on this earth for 50 more years or 2 days, I have got to learn how to live like this. Without any self- pity or depression, accepting that this is my reality. And I'm not there yet, but I believe that everyday God shapes me and shows how to keep walking the path to it.
Life.
There are so many lessons everyday and God is so faithful to remind me that I am not in this fight alone. 90% of the time I do feel alone, just me and God but the reality is that He sends so many people to help me through this. To challenge my fleshy heart, my entitlement, my agenda. There is such a beauty in being sick, and these aren't just trite words, if I were to die tomorrow, I would consider that I had a very great and blessed life even with Fibromyalgia. Being sick has opened up my heart and mind so much, in a way I just wasn't capable of before. And I'm not saying sickness is the only way to this, but for me, my life.... for my selfishness, my worldliness, my old viewpoint... it is what is stripping me, refining me. I thought I was beyond this because I am a believer, because I went to church but I still relied on my accomplishments, my status, being a leader, a spiritual mama, a nanny, being a type A. I wore my achievements as a crown, and my only crown can be Jesus and that is what Fibromyalgia is teaching me. I want to say I have this mastered, but I don't and the reality is that I probably won't for as long as I am on earth, but I see my life as significant. Maybe not to anyone on this earthly plain, but significant to the God of the universe, the God who chose me, and He knew I would get Fibromyalgia, He knew I would be sick and that I wouldn't be able to work, and He still picked me anyway, to be a part of His kingdom and to be a part of His family. There is work He still wants to do through me, and so I have to continually give this back to Him or else the bitterness does get too big, or the depression does get too big, and I do push myself. Sometimes that's good, and sometimes it's not so good. It's not healthy to push past your limitations. I have to be able to say to myself "you are sick. Janet, you are sick. You have a problem with your immune system, you have a problem with your nervous system. You are not crazy, you did not do anything wrong." And that's the thing, just like when I lost my baby, I feel like this is my fault. That I asked to be sick or made a choice or did something wrong, like I have to atone for it. But that's wrong, because Jesus already atoned for me on the cross.
So I'm not the selfish one here. I am learning how to be more like Christ in my sufferings, I am learning how to yield my flesh and desires and my life to Him, and they can't just be words or songs that we sing: "Lord I give my life to you, Lord I love you, Jesus lover of my soul, take my life...." We can't sing those things and then not expect to not really give our lives away, because that's what being in a relationship with Jesus is. It's giving away everything He has given us. And I want to be that person on my best day, and on my worst one. In a happy season, and in a brittle one like now. I want to be a woman that is after God's heart and if that makes people not like me, makes people talk about me, makes people judge my life, then so be it. I have to gain strength from that, from remembering that even Jesus was not accepted in his own hometown. He was mocked, and people belittled Him and He died this bloody, violent death so that I wouldn't have to sit here in condemnation. I carry this condemnation, this hellish guilt at being in a sick vessel and I want it to be broken off. So I have to yield and it has to be everyday, and I have to remember that I am not selfish. This is self-preservation and everything that I have to do in order to live is what I have to do. At the same time I have to also give away of my time and my talents and my love, and I think more then anything, I am understanding that we can do for people... I'm a doer, a giver, even with Fibro, but what I am slowly learning is that loving people is so much more imperative then the doing. You can't do for people unless you actually love them.
I don't feel sorry for myself. I don't. I may cry and I may sulk about Fibro and sickness and loneliness, but I don't feel sorry for myself because I have the One in me who is above all of this, and so my moods and my little fleshy meltdowns are nothing in comparison to what He does to a heart that is ransomed for Him. I pray that I will be open no matter where I am in life. Honestly I believe, God did not make me sick, but the choices I was making, running myself ragged and trying to be everyone's everything, that's not the life He had for me. Slowly am learning to accept that. Each day is a process and I am just learning.
That's my big revelation and it's pretty freeing...
I'm not the selfish one and this isn't my fault.
I'm not the selfish one.
People wanting me to be a certain way, people refusing to acknowledge my reality, people putting me down....
I can't be responsible for that.
I am sick. I am sick. I am sick. I am sick. I am sick.
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
"You will not have to fight this battle. Take up your positions; stand firm and see the deliverance the Lord will give you, Judah and Jerusalem. Do not be afraid; do not be discouraged. Go out to face them tomorrow, and the Lord will be with you.’”
2 Chronicles 20:17
I was able to carry my own library books yesterday. :) It's the little things.
P.S. I have this lump on the left side of my neck... poor left side. Everything breaks down on that side, from ear infections to hip bursitis to osteoarthrotis/tendinitis. It has been there for months, and it gets bigger and then small again. Lately the neck pain has been off the charts and the lump is bigger. Please pray it's nothing.
