I Don't Want To Know

James 1:2 (NIV) “Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds.” 

I Don’t Want To Know

Something came up in conversation the other day with my husband. I was taking my supplements and pointed out that many were for inflammation. He responded with, “Did you ever think that’s not what it is?” Referring to my immense amount of daily pain. "Absolutely," I responded. I don't think of it often, but it certainly crosses my mind on occasion. Maybe it isn't inflammation, maybe it's worse. Yeah, I won't go the doubt route.

I feel negative comments surfacing on a regular basis now. I feel like others are doubting and it's not helping my journey any. I snapped back at my husband and told him that No, I don't wanna know if it is something else. I don't want to go to the doctors for them to hound me and tell me I should get chemo. I don't want to know if it has spread and I only have six months to live. I am persevering and doing everything I can to prevent death but then when you think about it, no one can prevent death, we're all going to die.

Memorial Day was no different with the poor poor pitiful Joni, looks. I didn't want to go to his mother's, but I did want to see the family. She wasn't having a cookout or anything, just a yearly gathering of his aunt and two uncles that we only get to see one or two times a year because two live out of state and one hours away. I didn't want to go because well, I'm in constant pain and it's a challenge to get out the door, down the steps, into the truck, back out of the truck, ascend more stairs and do it all over again when the visit is over.

I was also concerned with the questions that would be aimed at me. Luckily his brother was there with his wife and son so it kind of took the questions away from me. Instead, I was met with eyes of pity. They looked at me like the cripple I am and treated me like a fragile broken child who needs assistance with every step. I wonder how they think I manage to get through every single day? I don't have a live-in nurse that cares for me, I DO take care of myself. I AM a little slow but I'm not a precious vase about to fall on the floor that needs catching before it smashes to the ground.  

Then there was the lightning storm going on for two hours and more. The gusty winds arose right before we left as did a little thunder and lightning and I wanted to wait but no, hubby had to leave then and there. The dirt road was a sloppy mess as we swerved and swayed until it came to an end. Every swerve of the car sent a tingling pain up my back. The short trip to his mother's had the pain rising and rising with each clap of thunder and every sliver of lightning. We arrived in a downpour. I said I'd wait in the car, but I got so frustrated with myself, I hopped out and limped, cane in hand, to the front door. Hubby on arm trying to walk in his normal stride and me trying to keep up with my tiny limps, in the pouring rain and gusting winds. 

I try and understand that his family never sees me, and hasn't seen me using a cane and just expected bouncy-bouncy Joni, but instead, they were met with Tiny Tim. After his brother left, his aunt was right on me asking how I was doing and if I was still doing my protocol. I tried not to be snarky but it was quite hard as my back felt like a tightly wound rubber band about to snap and I really was not up to a visit that day. I just said yes, yes, I wake every day and thank God for another day. I was curt but not snarky. 

When I went to get up to use the bathroom his mother was about to leap into action, "You need help?" Umm... no, but thank you. As I walked past her my husband was sitting there and I asked for some water and his mom quickly jumped up and said I can get it, I can get it. I love having people care, I love that they want to know more about how I'm handling my illness. I love that they don't even talk chemo with me, but a tightly threaded quilt will eventually dry rot. Remember, I'm here year round. Not that anybody ever asks about my writing but is as important to me as my husband's now-defunct blog he had while he was blind. Writing is my life and I live to tell my story. 

On the ride home from his moms the storms were still churning; hard to see, muddy roads a bigger mess but we made it home and my tears fell unseen as quickly as the raindrops. It was a trying day for me that no one understands. As stubborn as I am, I am not one to be pitied and the looks, the stares, they tore me apart shred by shred. While I know and understand how lucky I am to be in this family and to have people that care, you don't realize how much it hurts to know I have a family back home that couldn't give a rip about me. I never cross their mind in a day, month or a year. It makes me feel defensive and isolated when a person after months of not seeing me shows signs of caring. I go on.

Tuesday, the entire day was rainfall! Glorious rainfall with rolling thunder and a flash of lightning here and there but rain it did! I think we had ten storms in one day and they didn't stop until eleven at night. The temps dropped to normal on Monday, meaning Springlike temps of the 60's and yesterday the temps that were predicted near ninety barely made it to seventy. Alleluia Amen.

Like summertime storms, life comes at us unexpectedly. Sometimes the trials are easy to endure, at other times they're difficult. Sometimes it's a delicate rainfall, at times a hard downpour. Sometimes high winds, a few times tornadoes pop up. Surely you need to be ready but if you knew ahead of time that you were going to die, what would you do differently? If a doctor told you that you have six months to live, how would you spend those last six months? Me, I don't want to know. I want to live until I die and that's that. Sure I'll prepare myself for the storms about to strike but I will not sit here and count days and think each one my last. As long as God is my guide, I never fear the valleys. Don't pity me as I persevere! I go with God!

James 1:12 (NIV) “Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him.” 

I Had a Bad Day...

Job 33:19 “He is chastened also with pain upon his bed, and the multitude of his bones with strong pain:”

I had a bad day…

If you’re looking for a happy-go-lucky post click a button that tells you to go to the next blog, this might not be worth reading for you today.

Yesterday I had a bad day. A good day to me is where I wake and can move without pain, that makes me happy. Tuesday I woke up and could move so I thought yay it’s going to be a good day. I always try to stay optimistic but here lately, I’ve lost all hope in optimism. With the world, with people, even with writing.

My body reacts to the extremely hot weather so much so my knees feel like balloons and if I try to do any outside activity they reach the bursting point and I have to return to the house and find solace sitting in front of the screen resting my knees but not my fingers. 

If you were one of those curious people who would ask a disabled person what is wrong with them, then I’d have to be honest and say, I don’t know. All of my vitality was sucked out of me as a Hoover vacuum went over my body and took most of the life out of me. Now I’m a barely walking zombie of sorts.

I live out in the middle of nowhere in the middle of the cornfields surrounding me in all directions. The only communication to the outside world is from my online friends and a daily call to my mother (twice on weekends). I can no longer drive because of my blurred vision so when my husband asked if I wanted to go to the mall Tuesday, I got excited, sure why not. (I often forget my disability and move full steam ahead without thinking, just ask my kneecap I cracked on the wall last week.)

I often feel like taking a walk into the cornfield until my legs buckle and just lie down and let the bugs eat me and wait for harvesting time when the big harvester of crops finishes off what is left of my body. Or walking through the woods and waiting for nightfall for the coyotes to come and devour me or maybe a mountain lion (who has been spotted in my area) would find me to be a good meal. No, I chose to go to the mall instead.

We get to the mall and no shopping carts, that make walking easier on me, are available at the mall. I made my way to the JCPenny door. Wow, I made it, now to make it allllllllll the way to the back of the store to the tiny shoe department. We must’ve gone up and down the two aisles of men shoes five times before it was declared, “I don’t see anything.” I know I’m a woman and should love to shop but I despise the event, even if it is online, I DON’T like shopping!

Let’s go to Shoe Express he says. He had seen the shoes he wanted online but here in the mall is the same store so they should be here, right? No, no they were not after hobbling all the way to the other side of the mall. We leave there without a purchase and pass another shoe store so we go in there. By this time the mall was slowly filling up with the bored-to-be-home-from-school-with-nothing-to-do people. Did you know people stare too long at imperfect people? Long glaring stares as if to say, “Is she faking or is she really wobbling, is she crippled, what?”

Another shoe store another no sale. I start making a beeline to the exit but we have to go through JCPenny because the truck was parked outside the entrance that we had come through. Great! The pain by this time was unbearable and my eyes started to water. No, wait, it wasn’t water, I made it to the truck, breathed a sigh of relief and began bawling my eyes out.

Now I’m throwing myself a pity party. I’m done, I’m just done watching the world go ‘round as I sit crippled unable to get help, for the pain, for a cure, for my life back. I wasn’t done living. I didn’t ask for it to be taken away and here I am hearing people complain because their pool water is too warm, that their A.C. is too cool, that their vacation wasn’t long enough, or that they’re tired from working too hard. The next step is a wheelchair, no other option for me but a wheelchair. (No the cane doesn't work for long walks.)

I sit here and stare out the window and watch the corn get taller and think to myself, maybe God will take me today, maybe I AM done. As the tears continue to roll down my cheek I realize, I made it home. I think I’ll wash clothes. No matter how making it through a day pains me, I’ll go on… God will be calling soon and I have to be ready to answer.

Pity party over...

Rev. 21:4 “And God shall wipe away all tears from their eyes, and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away.”