I just had the first day up since my last post. I wish I was kidding. Fibromyalgia often means that I can't get enough sleep. I couldn't stay awake for more than an hour, maybe two, from Wednesday afternoon until this morning, with the exception of Friday evening. It's so frustrating to know that life is going on but not be able to participate!
Contrast that with today, when, thanks to the efforts of some friends, I was able to maneuver my power chair next to my workbench and actually work my way through the years of accumulated junk! Moving my chair along the bench, I steered clear of pain and frustration. I felt like I could do what I needed to do myself. In the end, it relieved me so much just to spend three hours working on an eyesore that I have seen every time I go through the garage. It's going to take a lot more work, but I'm going to get through it. I know, because I have the support and the help of friends and family.
I have long known, even before I was diagnosed, that Fibromyalgia Syndrome is not all in my head. The media has announced that yet another study confirms this. It's interesting to me that the poor balance, motor problems and tingling sensations so strongly and clearly showed up in this survey.
Every day, I have tingling and weakness somewhere, usually in my legs. It's scary when I go to take a step and my legs don't respond. I feel like a tree being felled because my balance already shifts but my feet remain planted. Once I yelled, "Timber!" right before I caught myself! I haven't fallen very far in a couple of years, thankfully. When I'm that bad, I can use my power chair to handle the difficulties and keep me safe. I used to stay in bed to limit my fall risk. That's no way to live!
I pray that God gives humanity new wisdom in the next few years on this chronic illness. Neurology is only now getting the fact that Fibromyalgia is real. They need all the help they can get!
I can get caught up in my own world of symptoms, side effects and economic factors. I sometimes forget that there are those with a similar vision and mission that have it much worse than me. I am grateful that God has not taken more from me. Yet Chris and I have one very important comfort. We have God to turn to in the weak times. When we wake up and feel more tired than when we went to bed, we have Him to renew us and speak words of comfort and strength. When the pain is constant and overwhelming, we have Someone Who suffered much pain to bring us to Him. He knows us, our situations, our discomfort and our hopes. He has promised to be with us always. He is near to us. He gives us each morning what we need. His eye is on us, even in the night watches. His hand protects us, even when we feel vulnerable. And when we are done, He will renew us with bodies that never see corruption. This hope will not disappoint us.
God, please bring strength Chris Klicka and his entire family during this time. Heal him, God. We know You are able to do this. Regenerate his body and make him whole so that he can bring You glory. Comfort him. Help him to see what You are doing and how You are using his situation. Be his peace during this time.
This evening, my 6 year-old daughter had finished her dinner, and, as we watched a video I was watching, I gave her a piece of Hershey's Special Dark chocolate. It's a treat that I like to give on occasion. She began nibbling on the chocolate, enjoying it. I had another piece and I set it down in front of her.
"Is that for me?" she asked.
"For when you're done with the first one, yes." I replied.
Immediately, the first piece disappeared into her mouth as she picked up the second, which she began nibbling as she had the first one. Soon that one was gone too. I wiped the chocolate away from her cheek as we continued watching the video. On the screen, a person in the video was suddenly healed and their appearance changed back to wholeness.
"Someday, I hope God heals me like that," I said.
"Me too," she said. "Sometimes I wish you didn't have to have Fibro-my-algia." Both of our sets of eyes got misty at her words. Fibromyalgia is such a big word for a 6 year-old.
"But there is a good thing," I said. "Because I'm home more, we're poorer, but I also get to see more of you. I get to watch you grow up." We hugged, and like I've done so often, I thanked God for her.
I think I understand why God doesn't show us very much of our future. If he did, it would be like laying down more chocolate in front of us. We wouldn't savor what we had in our hands. So often, we look to the future (or the past) and we don't savor the moment of now. We envision the next bar of chocolate or remember the last. Being in the moment, savoring each one, is what I want to do.
However, in order for me to do that, I have to quit thinking about the future (or the past). I have to trust God to take care of tomorrow and yesterday, the next hour, the next moment, so that I can release them and free my arms to embrace the moment. This is not easy for the schemer or the survivor to do, but it's something that the children of God do naturally. The schemer looks at the future, the survivor lookes at the past. The child of God is living in the moment, worshiping their Creator, loving those around them, and delighting in the goodness with which God blesses us.
I have been through much with this illness. I also hope that God heals me soon. But savoring the moment is what I was made to do.
I have been laid off as of the first of this month and for the last few days, I've been doing some real soul searching. My wife usually lets me process stuff like this on my own, but by yesterday, it appeared that I was stuck. And I was stuck. What's worse, the enemy was taking pot shots at me and my heart. That's the worst, because recovering your heart is nearly impossible in those situations.
Being stuck is no fun. You don't have an answer and the longer you go, the uglier it gets. At issue was my role as a provider. For so long, my love as a father and husband has been expressed in that. Since my disability, it's been difficult, no... next to impossible to find ways to do this. It's not like I have the option to grind my way through 40 hours a week. I tried that and my body gives out on me. I need more than just the weekend to recover and employers don't like paying you a 40 hours-a-week salary for less than 40 hours of work, sometimes a lot less than 40 hours.
This fatherly need to provide for my family doesn't diminish even though my ability to do so has diminished. I can't stop providing for my family because I have this inner drive to do so that is as real as a mother's need to nurture and care for the daily needs of her children. It's real and I can't stop it from deeply affecting me when it is denied or squelched in some way.
My wife and I finally connected yesterday, which was overdue, way overdue. It's amazing how much of life's activities two people can share without talking about what really matters. The ingredients are two people and a quiet room, and we had the two people, but the quiet room took a while to get. When we did, we undid the lies the enemy had been slinging at me like drinks at a bar. It essentially came down to who my hope was in. My hope could not be in myself or my abilities. My hope couldn't be in a system that man created. My hope had to be in God and His plan for me. That's the "head" part; like I said before, the heart was much more involved and God took me and gently worked on me yesterday. The cynicism, the darkness, the anger built up out of frustration, and the poison malaise of indifference all had to go. I was getting hung up on the meaninglessness in life (Ecclesiastes, anyone?), and that's something only God can fix. He welcomed me into His arms and He held me while He worked on my heart. His love and grace for me through Jesus knows no bounds!
Today, I feel empty, but it's a good empty, like a blank sheet of paper ready to be filled up with drawings, musings, or folded into a wonderful paper airplane that soars across the room. I don't know what's next. I know my desire to provide is a good one and it has to be accommodated somehow. I know that I love to write, communicating God's love and spiritual truth. Beyond that, I'm ready for God to use me. My prayer is that He lets me do what I enjoy. Please pray for vision and clarity for me, if you think of it.
Ronald Reagan was right. No more dangerous words in the English language have been spoken than, "I'm from the government, and I'm here to help you." The danger comes when fallible humans think that they can make it their business to help other fallible humans. They may be able to, but because they're fallible, their help is not perfect for the situation and often it fails to solve the majority of the problem.
Take for example, our government-regulated, low-flow toilets. Unless you have a "pressurized" system, these toilets frequently require extra help disposing of solid waste. They were legislated because people thought we were flushing away perfectly good tap water that could be conserved. While the road to hell is paved with good intentions, I'm convinced these toilets are at the rest stops along the way.
Another example is our Social Security Disabilty Determination system, a well-intentioned debacle that is all but killing those it was intended to help. In summer 2006, I filed my paperwork with the SSD system. Every doctor I've been to in the last two years has agreed that I am disabled. Yet, here we are, leaving the summer of 2008 and I still don't have a favorable decision. Mired in red tape and bureaucrats, this government system tries to help those people who need it, those who have worked until an injury or illness made it impossible, but in the end, SSD drives those same people into bad credit, bankruptcy and yes, even suicide because of their ineptitude.
It is a difficult thing to admit, especially for left-leaning Americans and outright socialists, but the government is very poor at improving peoples lives. It's the reason so many talk about faith-based initiatives. Those organizations that realize the nature of man and work with it instead of against it will find greater success. They are morally driven to help people and are less vulnerable to corruption (key on less vulnerable, not invulnerable).
If you are looking to the government, you are already desperate. If you are hoping for real help and maybe some validation for your suffering, the government will likely be unable to provide it. Instead, try doing what the faith-based people do. They look to God as their Provider and their Source. They take God as their ultimate supplier, not the government because they know that the government is made up of broken people whose desire to help is choked in a monolithic culture of bureaucracy. They know that God will work through them and take care of those who wrong them. In short, they work for the Big Guy and He takes their work seriously.
Editing Note: This post was originally published today on my Disablogger blog. I thought it could be posted here as well.
Having a disability puts issues of the heart up front. It makes those issues unavoidable. If you have an emotional control issue or even a controlling attitude that makes it easy to manipulate others, a disability is the stressor that forces you to deal with it or let the whole world see your problem while you deny its existence.
I say this because I yelled at the kids today. I mean, someone small got in my way and I used a forceful voice to call their attention to it. That’s not the person I want to be, yet that was how I acted today. I’m not proud of it, either.
Likewise, when we are prone to self-pity or self-loathing, we tend to let it get the better of us because of—not in spite of—our disability. Ironically, we can let a disability enable us to indulge in selfish behavior. We focus on ourselves, or we let conversations center around how we are getting along for more than just a little while, or we complain more than we should, all because our disability supposedly grants us license. We all have been dealt some bad cards, some we have from birth to death or some we have for a season, be it short or long. Licensed selfish behavior is still selfish, and as any kindergartener can tell you, being selfish pushes away friends and happiness.
I have challenged myself to focus on others more, doing things for them instead of doing things for me. Doing so has helped me out of the selfish mode that is so easily slipped into. What’s more, I have found that I’ve reclaimed that piece of my humanity from my disability, becoming a real person in my own self-image again. It’s funny how not focusing on something you don’t have tends to enrich your life so much more.
A long walk back from fishing at a reservoir in 1998 taught me something new: mountain lions don't roar, they scream. We were walking toward the dam when a unhuman, warbled scream made the hair on the back of my neck stand up. "Uh, what was that, Dad?" He told me to just keep walking. A few minutes later, the scream sounded again from further away.
"That was a mountain lion," he told me.
Earlier this spring, I had the chance to hear it again at a big cat sanctuary and it still brought a jolt of adrenaline, even with a cage and enough distance to keep me safe. It was the primal reaction to a threat that 34 years of relative safety couldn't quite smother. It makes me wonder at how this woman has not only survived but thrived after her encounter. It takes a lot of prayer and not just a little courage. I know that God is using her in a powerful way.
Like my pastor once told me, "Good is often the enemy of the best." I can do a lot of good in a day, yet due to my disability, God isn't letting me do a whole lot of good right now, so I'm focusing on the best: his will for me each day. If that seems simple, it's not. You see something that could use some work or you find that someone wrote something that inspires you to write something else. I am constantly challenged to do what's in excess of my capacity. It's so hard to rest when I see work to be done! I have to do only what God wants me to do, and somehow, God makes life work out. My family and I have lacked nothing. That may change tomorrow, but today... I rest in His grace to take me to the next moment.
Last night, CBS aired the first part of Armen Keteyian's report on Social Security Disability and the veritable hell people go through to get disability benefits. My name is not Scott Watson; it's Steve Walden, but this has been my world for the past two years.
How do I feel about all this? I feel angry and frustrated that a government I paid involuntarily for years while I was employed, working despite continuing pain and exhaustion, that government has denied me the benefits I paid for. Like Jerry Rice in the report said, "I'm not asking for welfare. I'm asking them to give me what they promised."
I don't mean to sound bitter. I know that the last thing we should do is look to the government to save us. In a very real way, I could be accused of doing that. Instead, I hope that I am looking to God to provide for us. We prayed about filing for disability and felt God leading us to do that. Now, 18 months later, I can say that God has continually provided for us. We are nearing the end of any resources we have to our name, but God is continually reassuring us of His promises to us. We are waiting on God to act, not the government. God may act through the government, but we are letting Him have total control and do what He wants with our lives, our home, and our future.
I still plan to watch the other half of the report, although I know what they're likely going to say. The reason behind the high rate of disability claim rejections is not that the applicants didn't know what they were doing or that they weren't really disabled. No, the reason behind these claim rejections is that Social Security does not have the ability to pay out all the claims. The baby boomers are retiring now and Roe v. Wade has eroded the population that can support the burden of it's progenitors sucessfully. Much like the insurance companies in the Gulf Coast after Katrina, they are going to lose their shirts and no bureaucrat wants to be the one who is accused of killing the company, or in this case, the Social Security Administration. They find choking on paperwork and endless court delays preferable to paying the claims.
There is a huge backlog of cases. There is endless bureaucracy and inefficiencies. There is a disturbing amount of suicide and other signs of despair among the applicants desperate to get in. We need help and we need it now.
