It has been a while since I have discussed the brutal impact Lupus has habitually interfered with during my life. Today has been a total breakdown and I stayed in bed for most of it. Why the sadness infringes on my plans, I don’t know. My last infection, about 3 weeks ago left me with 2 weeks of antibiotics. I thought I was in the clear but redness hit my face and neck like supersonic colors. Of course I got my fever blister and only a little sore in my mouth but nothing like usual. My legs and ankles have become so inflated at times I can barely walk. I do have my special shoes but they are so decrepid I can’t even go to the mailbox in them. So embarrassing but I love them! My main concern now is my lungs. I am very short of breath and my inhaler just is not cutting it.
I am sorry for anyone going through any chronic illness. People will never know the sadness that everyday brings. Some days are so unbearable I can’t even put it into words. The people in our life have to continue their routine obligations so the sadness and guilt become overwhelming. You hurt so bad that your focus on God can quickly disappear and allow the enemy to move right in. I get fearful at times when I am alone. I worry about the future and I can quickly feel my mood change. I fear that I do not love this person that I see. I feel shame for some of the failures in my life. But God sees a desire to love us through our shame and guilt. But, I feel guilt and shame for not always remembering that. Hang tight you tenacious strong survivors. I love you all.
Lupus or any chronic illness can bring about an array of emotions that can occur in any order and lasts until God gives you the courage to move on to the next phase. He knows when we focus on his work in our life , we’ll discover our spirit and courage to react to the life-altering event we have been assigned to.
1. Denial-Don’t give into fear, but break its hold through scripture. Our willingness to obey is a key to answered prayer. Instead of denial, if we demonstrate thankfulness in harsh circumstances, other people may see our response. The people in our life will want the peace they see within us for themselves.
2. Anger-This can ruin relationships and make it difficult for a person to move forward in life. It is a painful storm of resentment that will always block our path to righteousness. This is a hard one but, rejoice in the fact today that God is giving ou this opportunity to give him glory.
3. Bargaining-This is a negotiation for extended time. We must realize the first rule of warfare is to know one’s enemy. Through God we can conquer Satan and win our unseen battles. The combined forces of hell cannot equal the supernatural forces of a single believer. To me, bargaining tries to defy logic. We just need to believe and praise the Lord.
4. Depression This is an unbelievable force that can be the toughest stage to go through. I seem to keep coming back to this process over and over. We are to fix our gaze on the Saviour, and let his joy become yours. With so much out of our control , it is such a relief that we are called to get our joy from the Lord. Depression can become a major stumbling block. Do not give in to fear but live in confidence. Lean on your relationships but process your feelings and brace yourself for God’s grace.
5. Acceptance-Humble yourself. People who pass through these stages can enter a single one for a long period of time. God has a purpose in mind for each experience whether pleasant or difficult. This is the time to trust God, grow in your love, and never forget how Jesus embraces us. We are his masterpiece and no matter how fragile our bodies get we are perfect because God designed something different for us. Our relationship with him will take us to a place where we can finally say we are done with this fight. I am unique and my purpose has been faultless.
Well I want to talk today about a pillow epilogue. We all privately talk about it in our quiet haven but it usually does not become a source of theatrical agony. We had a friend staying with us for a few nights. He took one of the boys rooms and so a jolt of anguish immediately overtook my emotional emphatic child who was forced to share a room with his brother. You see we also took one of his pillows. The one he puts in between his legs. We have couch pillows and pillow pets but they were not his traditional pillow. We needed to use his for our guests. We went through a complete meltdown before I finally left the room completely exhausted and sick at heart. About 30 minutes later I went in to check on him and he was sitting in the same position with the same somber look. I sat with him and found out the main reason for the meltdown was he gets bruises on his knees if he doesn’t have a pillow. How do I explain to a child who sees life through his own needs and desires that there are other simple ways to fix a pickle? At !0:00 at night there isn’t. We laid his head down and he finally closed his eyes.
But, where do those emotions go? He did not get to let them out. How can he continue to live inside of his own head and not feel overwhelmed. I want to know what to do about it when we do talk. How can we describe our feelings and have a release of despondency? How does he feel about my Lupus and watching me change day after day? I am not okay with just explaining my symptoms and living this life. He is described as having a mental illness. No matter how you try to get around it, you can’t. Even your family cannot be truly honest with you having astigmatism like that. When he is mad it is not always because he is erratic. It is a real emotion focused on his judgement. How can we help? We could possibly slant our point of view and become nonpartisan to the simple pillow problems. He got through the night now I just need him to get through the emotions.
“Don’t just pretend to love others. Really love them. Hate what is wrong”(Romans 12:9). Why is it so hard to love some people? My mother-in-law, the one who gives me a pounding headache. The one who has the un official authority to say and do anything was ringing the doorbell at my own humble house. I could hear her come in and I smelled the spring air fly through the house like a wave of sweetness. I heard her uneven steps as she navigated over the things on the floor. As I began to apologize for the jeans hanging on the back of the chairs and the shoes scattered around, I forgot about the dishes in the sink. I quickly tried to make it to the sink without her realizing what I was about to do. Her laughter filled the house as the hot water bubbled up and over the soap-filled dish pan. She put her arm around me and reminded me her house was not always perfect. It certainly did not make her a failure as a mother. And she said,” I don’t think that of you.” There is an admiration that comes after we have tried to do another persons job.
When I was a child everything I did had to be perfect. The anxiety that led up to an event was gut wrenching. I did not want ny father to make fun of me or talk down to me. It was my sport and I was sure I knew what I was doing. But I was so used to it. Did he ever tell me good job? I can’t remember. I am sure at times he did. Even now I am the last one out of four girls that he calls if something happens…good or bad. is he embarrassed of me. Does he not trust me? After my introduction to my wild side that REALLY changed things. He did not trust my professional opinion or ask for advise on anything. I always got a lecture on why I needed help or money. There was always a fight. He always had to tell me what I was doing wrong. Not in a good learning experience, but a bad hurtful one. I loved him but now I don’t want to be around him. I needed him. Not to fight, not for him to dominate the conversation but to teach me, to love me. Was I a disappointment? Is that why I am not good at much? Am I teaching my kids that? Am I raising my kids wrong. That is the opinion I get from him.. Why does he hate me so much? How do i break the cycle. Is this why I feel so guilty after I know that I have done some thing wrong? It is like I can never get it back. It will never disappear and it leaves me with a big gushing hole in my heart. Is this why I can’t forgive? It is a horrible feeling to feel as though you are not good at the things a parent expects you to be.
As I go through my seasons I have to remember that God commanded us to love our enemies . I pray that he will teach me how to love difficult people.
I hate the misology of victim. But, I am a casualty of my mind. My mind does not fully flower and bloom at the sight of happiness. I sit in my gutter and look up at you with excitement at every word you promise. But your promises are fake. They push me down deeper and deeper and i can see no way out. Where did I go? I want so much to be powerful again. I want to love and feel life again. I hear your promises and I know now they are not true. You are laughing at me but in your own sincere way, I want to climb out of this madness but I can’t. What is there to fight for anymore? I feel powerless while everyone around me looks so impressive. I am stuck in this cold wet abyss. Can anybody see me? What is going to happen to me? My voices yell at me, but I count on them so much. I hate them. What is the truth? Why can’t anyone tell me it is going to be alright. Would I believe them?
I am crying out in pain. Why is nobody listening? Why is nobody helping me. I don’t want to be like this but I have isolated myself. I have no true connection with anyone. When my family reaches out for me they are fearful. They act as if I am going to fall apart. Have they seen this in me to many times before? Have I scared them so much with my outbursts that I am a stranger to them? I need them so bad but they have seen this so much. It gets worse the longer it goes on. They love me but I am so angry that they cannot see my pain. Why can’t they feel what I feel? Why are they not like this? I am now changing. I can feel it. My emotions get raw and go somewhere. They hide deep in my head and now I am numb again. My anger turns to rage and my voices are mocking me. Do they want to hurt me or do they just hate me? I push them way back and pull my pleasant disguise forward until the pressure of the pain bursts wide open again.
It was a typical Sunday morning.I came downstairs for breakfast but my husband had already eaten. I was tired and still drunk from the night before so I was mad that he had not waited for me to eat. . He was preparing a bag to leave for work. He normally went out-of-town on Sundays to get set up for his week ahead. His phone rang and he carried it outside. I could see him laughing and enjoying the conversation on the other end of the line. He came back inside and told me he was leaving for work. I was shocked because he normally left around dinner. I started the typical fight and the day dragged on. That night when he called me from the hotel the fight continued. Out of the blue I asked if he wanted a divorce and to my complete hysteria, he said yes. Just like that. He did not want to talk. I did. I begged for some kind of connection but his voice was cold and numb.
So this is how it started. It came on like a gun, only it left me wounded and begging for death. I could not move. I felt a creepy burst of anger clawing its way in but at the same time a guilt of selfishness overcame me so intensely that I wanted to justify every painful feeling and dysfunctional behaviour. But there was no one to justify it to. My side of the story did not matter anymore.
I was unpleasant to be around. I was embarrassing, irritating and basically rude. But I was sad. I was gasping for air. I had strong cravings for anger and bitterness. This lead me to lash out at anyone who stood in my way. Some nights I would lie in bed and call out his name but no words would come out. I felt like I was in a room with no ceiling or door. It had hurtful characters covering the walls and I scratched my way up the wall only to fall back down into the hurtful pit that began to devour me in the first place. The agony paralyzed me for years. I just could not take responsibility for my actions. Bitterness and jealousy impelled me. jealousy attacked my heart. It raided my emotions, motivations and relationships. This can cause an irruption in your relationship with God.
Does God give us more than we can handle? My answer would be yes. 2 Timothy 3:17 says: It matures me and equips me to be ready for every good work. Most of us willing to follow our own hearts not God. Lead your heart to God. The heart can sometimes be untrustworthy. Our problem might have a redefining purpose. It might hurt so bad that the pain will draw you nearer to God. We could also be being tested and purified. Others can see your faith and strength through your distressing times. How are you handling it? It is not up to us to judge what purpose God has laid out . If it hurts, tell him, cry to him. He is the only one who knows why trials have crept into our lives.
When you have Asperger’s you wake up every morning in a strange new world. You scan your room to make sure you still have four pillows. You look to see if your books are stacked neatly the way you left them. Your lampshade is tilted just enough to shine the light at the bedroom door. Your cars you lined up on the window sill are now neatly put in your blue bucket not the red one because that one is for your legos. Ok, it is now safe to climb out of bed. I watch Caleb walk over the dirty cloths and miscellaneous toys to go to the bathroom. It is the one certainty in the morning. He has lists in the bathroom, bedroom and kitchen to help him get ready and prepare him to leave at a certain time. His head stills spins widely out of control. We pick out his cloths the night before but he still forgets to change his underwear. The first time I told him to put on deodorant he proceeded to rub it on his entire body, face and all. He has a bucket with deodorant in it but he doesn’t remember to put it on. He has to make his bed but he forgets. Since he has already checked his pillows, to him his bed is complete. He has to pick up his room but he only sees his buckets are in order and lined up. He does not see the trash and cloths that I see. He forgets to brush his teeth so we have a toothbrush in the kitchen so it will remind him.
Being an Asperger’s mother makes me proud. I love his attention to detail. I love that he puts all of his energy into something he is passionate about. But with the teenage years creeping up on me, new problems are now arising. He has learned hopelessness. He lacks self-confidence and is beginning to act out. He has developed poor problem solving characteristics because he can’t handle situations. He has to be taught through every problem. He needs to know how to handle it and work through it so he can function with confidence and competency.
These children do not have a choice. We are their voices. At times they are truly victims of their circumstances. We are so tempted to lose our patience. But, to have mercy we need to have mercy on ourselves. All they need is encouragement and the love to persevere in any situation.
Italo Calvino said: The more enlightened our houses are, the more their walls ooze ghosts. Image credit: “love Don’t live here anymore…” – © 2009 Robb North
I look at this house and see the western sun filling the windows with a warm amber glow. I see the loving family embracing the children running in and out. I also see the family very rich in love while only providing the bare necessities of life. My 10 yr old sees sadness. He cannot see passed the dilapidated house with no windows whose previous owners cold not have enjoyed the supplementals of life.
How could I as a mother have failed so much? I thought I had taught my children about selfishness, and having a proper attitude. Not to see things from the outside in but to look at a person’s heart to find their true identity. I write this as I hear my boys fighting in the next room as they are playing on their newest hankering, their “precious”. My husband calls the xbox the “precious” because if left up to them, my boys would play on it day and night. They began to plan their days around it. If I call them for dinner they eat as if they are mesmerized by the hum of the power button in the next room.
I begin to think though why not love this game? My son does not have to change who he is to play it. He does not have to please a loving member of the family so that he can hear them say I love you. He does not have to face the pain and rejections that occur when we are around family that may not have the patience to see him for who he really is. He sees this old house as a self-portrait. A strong sturdy shell but hollow inside.
My job seems to be a little harder at times. Every day is a challenge to keep him from slipping into a depression that others see as controlling and demanding. It hurts to be alone. It also hurts to walk into the lion’s den. Imagine the fear he feels not being able to spend time with family because he is afraid of what might be said to him. My younger son just knows that something is not right. But each of them know about sharing and love. We have a unofficial cookie ministry for their friends. If someone is sick or in need, we bake. I have one that cooks and one that gives them out. I truly have the best of both houses.
Plane Crash. Bags flying everywhere. The captain standing at the front of the plane telling jokes in his Dallas cowboys pajamas. What a vivid imagination for a 10-year-old flying by himself. Through the eyes of a child life seems so unbalanced. These mystical experiences can seem so dangerous but, are they?
As a child our perspective is simple. It is life that messes it up. There is an intimate purity and love that can only be seen through a child’s eyes. At this time of year lights sparkle. Neighbors and friends give out cookies and cards. So why as adults are we so dismal? We are reminded of the loss in our lives. We try to replay the past holidays as if we can perfect the details of those gingerbread treasures.
We also hear the story of the birth a baby born to a virgin that ultimately grows up to die in a tremulous way. This story can be frightening for a child who hasn’t learned the power of sinful forgiveness. But he shines in everyone. He gives these little ones companionship and virtues. His intimacy guides them through experiences no mortal influence could.
Your substances belong to Jesus. Let no one defeat you… “little ones to him belong, they are weak but he is strong”.