People shouldn’t think that I’m always strong. I know how to rise to the occasion. By the grace of God, by the power of the Holy Spirit, I get up and do what needs to be done. Just going into the kitchen and sitting on a chair with a small blanket over my knees and my feet up on another chair-that’s hard work for me. (It’s worth doing because I can be with my family during meal time.) But that’s not being strong. Here’s why:

We are taught and reinforced to put on a good face. “Smile!” That’s what we hear before the camera flash no matter what kind of mood we’re really in. Hardly without exception we smile.

There is a difference between “being” and “doing”. We’re trained and we force ourselves to “do strong” things. Some of us wake up at 4:30 in the morning, commute several hours to work, work 10 hours, another two-hour commute to get home, and barely have time for dinner before bedtime just to start the whole process over again. Even if it’s not to that extreme most of us know how to “do” strong things.

To give a personal example, no matter how high my pain level is, I was taught to be “polite.” So if I’m miserable with pain, feeling grumpy, maybe I had an argument with a family member, and you come up to me and ask, “how are you doing?”, I might answer by saying, “fine!” I don’t think that lying like that is really polite.

But the real deal that I want to talk about is to “be strong.” That involves something more than the learned external performance which is, in comparison, easy to do. To be strong is a matter of one’s character and one’s relationship to God. It is developed over one’s lifetime. It is very personal as opposed to what we do externally.

Most of the time, I think, by the grace of God, I am pretty strong. God granted me strong faith, given me much grace, and taught me to depend on him. As a result I am able to be thankful, worship God, and encourage others in their faith. All this is an awesome privilege.

There are those times when I’m feeling particularly weak. I can say with Paul, “to be in heaven is better by far.” I won’t go as far as Job who said, “may the day of my birth perish.” But really it’s the same thing. It’s admitting that I don’t want to be around in this world any longer. And that’s completely selfish, lacking in strength. It’s a pity party.

I don’t get envious of people when they get to do good things. But I am desirous of the good things that they get to do. Maybe that’s a kind of envy.

When I hear about somebody who went on a hike in the mountains I long for that joy. When I hear somebody playing guitar as I used to I can become very melancholy missing that joy. When I realize I failed to be a good dad because of my physical constraints and pain I grieve not only for my children but for myself. I have a pity party.

Pity parties occur when I am weak. It does, eventually, caused me to turn to God for my strength. My life is redeemed from the pit. (Maybe pity parties are what you do when you are in a pit. haha) He crowns me with love and compassion. (Psalm 103:4) “I trust in your unfailing love; my heart rejoices in your salvation. I will sing to the Lord, for he has been good to me.” (Psalm 13:5-6)

I’m not strong. But God is awesome. “The Lord is my strength and my shield; my heart trust in him, and I am helped.” (Psalm 28:7)

My comfort is that when I’m feeling weak I can call upon God who is always strong. Thankfully my pity parties do not last very long. The Lord is my strength. Please pray for me. We all need to pray for one another!

Alive in Christ,
Ed

I am in constant pain–but I need to qualify that a little. I sleep to escape pain and to “reset” when I am having a high level of pain. So usually there is only pain or sleep with one minor but notable exception.

It seems odd to me every time this happens. Sometimes once or twice a week I will experience about 2 wonderful seconds without pain. It reminds me what it is like to not have pain. It is otherwise difficult to remember what it feels like to be without pain.

On occasion I will wake up, usually after having a vivid dream, and feel no pain. Zero. For the last 10 years it is the only time I feel zero pain anymore. But it only lasts a couple of seconds. I barely have time to enjoy it before the pain returns.

When the pain returns the sensation that I have is as if pain itself is poured into my veins as it spreads down my legs and arms into my feet and hands. It is a very odd feeling being followed by the usual, constant pain that I feel.

I’m glad that it happens. Even if just for 2 seconds I delight in the pleasant feeling of having no pain. It is also a reminder to me and thus a hope for a solution. If I can be conscious yet without pain perhaps there is medical solution that hasn’t been discovered yet. It is also a reminder and thus a hope for that day when there will be no sorrow and no more pain.

“And I will rise when He calls my name; No more sorrow, no more pain…” (from the song “I Will Rise” by Chris Tomlin, one of my favorites)

Something that I’ve come to realize as a byproduct of these events is the “wall” or limitation of the pain I feel.

It is difficult to describe some things when there is no clear point of reference. So be patient with me and my words.

Can you imagine a system of hoses that are connected together with a funnel at the top? There is also a way for the air to escape so that one can pour water into the funnel and it will fill the hoses. When water is poured into the funnel it flows freely and quickly into the hoses. But when it reaches the end, when all the hoses are filled, the water no longer freely flows into the hoses.  It is restricted by the capacity of the hoses.

After my 2 seconds without pain when pain is poured back into my limbs it flows freely and quickly to all parts, in fact, to my entire body, not just my hands and feet. But as the pain finally reaches my hands and feet the flow stops, everything is filled. If it kept pouring in I fear the pain would be unbearable.

I suspect, as I am only able to do, that the medications that I take, Lyrica (like Neurotin) and Trileptal, which each are presumed to block different neural pathways, are the limiting “gatekeepers” which prevent the pain from entering any more than it does.

My explanation is poor, I think. What I feel is known to me but somehow I can’t explain it clearly. Please forgive me. My hope is that if someone else experiences something like this that they will know they aren’t the only one who feels it. They have a companion.

I take great comfort and refuge that Jesus knows exactly what I am feeling and He has compassion for me. He has given me faith and strength to endure. He is my Redeemer and Savior. I will praise Him forever.

It is difficult to communicate some things. Georgia understands. She understands at a depth like no other person. She understands this: I’m wearing out in ways other than my physical body.

As you get older your memory begins to fail. This is happening to both of us. Sometimes it is funny to us but I think most of the time it is frustrating to us. My capability to organize my thoughts and even to pull out the correct words from my brain may be related to short-term memory, or to the meds that I take (which affect neural pathways), but there are other things happening to me in addition to these afflictions.

Probably due to the constant onslaught of pain signals to my brain it seems to me that my brain’s “bandwidth” is far more narrow than is common for most people. I can almost feel what it is like to be autistic or with other social disorders. I can’t seem to process information input as fast as I once was could. I overload. I get stressed. I shut down.

It has become a fearful challenge for me to attend any large gathering especially if anything is expected of me. I do it anyway in order to be part of life–specifically to be a part of family, sharing my life with my wife hopefully to be a blessing to her and to my children. I go to church and can act normally but what is really going on is an increasing overload. I have missed large parts of every message for months now because this overload, stress, and pain. The overload causes me to really shut down, to go to sleep, right in the middle of our church service.

Even in small gatherings there is a significant “acting” that happens. You could call it “rising to the occasion”. I force myself to be a part of what is happening. It is like running to get the newspaper on a cold, wintery day in bare feet. You can force yourself to do it but only for a precise, limited time–just enough to get to the sidewalk and back. That’s it; that’s all you can handle. In the same way I do whatever is expected of me. I go to my doctor and then go home to crash. I play with my grandchild, something I love to do, but then I’m spent. Nothing left except to sleep. Sleep–that’s how I reset for the next thing.

My entire life outside my cocoon is like what I have described. Unless I’m in my 80 degree Fahrenheit room, feet elevated and wrapped in blankets, I’m stressed. Even our morning family Bible study, which I love, is difficult. I’m outside my “bubble” of comfort. We try to make it suitable outside my room, feet elevated, “shields up” (I wear a thermal hat or hoodie), a blanket wrapped around my feet and legs, and one of those parabolic heaters aimed at me. It is still stressful. I take a nap after Bible study.

My reluctance to pain affects my personal life in other ways. It is difficult for me to brush my teeth so I neglect to do it as often as I should. There are numerous other ways that I don’t take good care of myself. This, sadly, causes my wife to become stressed. She wants to take care of me but I “don’t want to put her out”. She wants me to take care of myself but I don’t want to put myself into a world of pain. So many things that should happen don’t happen.

I don’t see any solution in my future except the complete healing that I will have when I’m in Heaven. Until then I will function at the best level that I can. Every morning I will force myself to be a part of this world of pain that I must endure in order to be a part of this life of love that surrounds me. God is good.

Thanks for listening. Time for a nap.
In Christ,
Ed

Just a photo – Camp Susque photo

I can only relate my experience with pain as I did in the journal entry Lightning Bolts of Pain. I don’t understand the processes involved.

I spend all my waking hours managing pain either through conscious activities such as distraction, keeping my feet elevated and warm, through anti-seizure medications which seem to hold back the pain, or unconsciously.

Occasionally I make a mistake, maybe it’s more like an overload of the stress involved holding back the pain. I sometimes accidentally allow the pain to come through and actually feel it in its full force. It’s horrible. This only happens about a couple of times a month. It is a lot of stress to hold back my pain but I’m not really conscious of the scope of it. Let me try to explain this.

Yesterday evening after a particularly stressful day including more activity than usual and constant higher pain levels I was in bed trying to get my feet “stable” again. Sometimes I hold off going to sleep in till a reasonable hour so that I don’t wake up at three in the morning. I have to hold off at least until 9 PM when I am due to take my nighttime medications.

This was the situation when I made a mistake, or overloaded; I stopped holding back the pain. All of a sudden there was a surge of pain that was almost a whole body sensation. It was mostly my feet and hands of course, but several other areas also that I had forgotten about. It was as if every area of pain that I was holding back just let loose, a surge of pain. It was horrible as if a sudden disaster came upon me. I immediately turned away from whatever it was I was doing and had to consciously push back the pain. That wasn’t an easy thing to do. It was as if I was pushing it back into a box where my subconscious could take over and do its part to manage it helping to keep it at bay.

The event only lasted a few seconds, maybe 10 or 15 seconds, but unlike a lightning bolt of pain where I had no control this was something that I had to make quite a conscious effort to get it back under control.

I miss my dad most of all. I wish that I could spend time with him. When I was young I was filled with “things to do.” Now I understand the value of simply “being with someone.”

I also miss my once best friend Leo Jett and my other once best friend Bob Prior.

A result of missing these friends is that I will no longer take for granted time spent with people. I will not rush. For example when I visit my mother-in-law I purpose to take my time with her. I’d spend the day with her except that it would wear both of us out. So I spend an hour or two at least each time I visit. No hurry, no worries.

Ed

Being over 50 years old there are few things I could say that are worthwhile I think. There are a few things in particular I feel I really need to say.

I’ve been married 26 years now. Over all I give our marriage 4/5 stars but I think that  is optimistic, overlooking some serious faults that we had, that I had early on. Our marriage is great now in my opinion. Five out of five stars. Maybe I’m still being optimistic.

Early in our marriage I was so very blind in so very many areas of life. One might look at me and think that I had a great work ethic. I knew how to work hard and give everything I had to the job and not be lazy. The problem was that I had my priorities mixed up. I put my work above relationships. I put technology above relationships. I could make quite a list of all the things that I put above relationships.

One of the areas that I was completely blind to-and I thought about this a lot whether or not I truly was completely blind-was how harsh I was with my wife and my children. My loved ones, specifically my parents and my sister,  tried to bring that to my attention. In other aspects of child training I know I did well enough. Any criticism will continue to fall without a response from me. But even if aspects of my child training were correct I went about it in an overly emotional and often times harsh manner. I really didn’t know what I was doing, how I was coming across, how I was affecting and hurting people, the people that I loved the most.

How could I be so completely blind! Seeing it so clearly now as I do helps me to realize more so that there are things that I’m blind to, things where I need to listen to my loved ones who are trying to correct me and bring things to my attention.

This also helps me to see other people and recognize their blindness. By experience I also recognize a certain amount of futility in trying to make them see what they can’t see. I will admit that I was so stubborn and arrogant such that I was less likely to listen to anyone. I now witness in the lives of others humility, a teachable spirit, and genuine desire for maturity and growth. It varies from person to person how willing they are to listen and learn something new about an area in which they are blind.

I have much hope for myself and for others. The others I know won’t have to wait until they’re 50 to learn how to be gentle, patient, and loving even in the midst of whatever sort of chaos sin brings about.

There is always so much more that I’d like to say but my disability greatly limits what I can communicate.

Mercy triumps over judgement.

Alive In Christ, Now and Forever,

Ed Rodatus

“…but each one is tempted when, by his own evil desire, he is dragged away and enticed. Then, after desire has conceived, it gives birth to sin; and sin, when it is full-grown, gives birth to death.”

(James 1:14-15)

Temptation isn’t sin. Jesus was tempted. We, too, are tested in this way. Satan tempts us every day. In doing so our faith is tested and we find out if it is pure; by going through the trial our faith can become stronger.

As it clearly says in James it is by our evil desire that we are enticed. That gives birth to sin and death.

The words that I like to use to help me remember this warning are these:

Distraction, Attraction, and Destruction. They are simple enough for me to remember.

Being alive I can (easily) be distracted/tempted. One can hardly go through the checkout at a grocery store without some magazine that distracts us from our opportunities to glorify God by our life. I can assure you that I am often distracted. But I am to refocus and to take every thought captive to obedience and the submission to the Lord Jesus Christ.  I do not consider that distraction to be sin – unless I allow it to become sin.

When distraction becomes attraction then I have sinned. It is a very short step, so easy to allow, unless I say “NO!” to the initial distraction. It is one of the areas where a knee-jerk reaction is merited, where it is necessary. If I don’t immediately say “No” to the temptation then that becomes sin. And sin brings death – destruction.

Distraction – Attraction – Destruction

That’s the progression as I see it.

Think about the Garden of Eden. There was the command, “don’t eat from this tree.” But Satan tempted. Man (woman) was distracted from their devotion to God. Rather than not allow the distraction they became attracted to the forbidden fruit. And they sinned bringing about the destruction of man.

Distraction – Attraction – Destruction

I repeat it over and over to help me be careful at the point of distraction. I am all too aware of the progression. I’ve personally experienced it. So I will promptly turn away from a distraction. That has kept me from sin on many, many occasions.

There are the blatant, obvious kinds of distractions that entice us by our evil desires and then there are the subtle, stealthy kind of distractions. Cheerleaders are of the first blatant kind of distraction and perhaps football is like the second subtle kind of distraction. I’m not saying that watching football is sinful. But it is sinful if we allow it to take us away (distract us) from our responsibilities. And I would define our responsibilities as they pertain to God, our family, our employer, etc.

If someone watches football when they are supposed to be at work then I expect that person will be fired — Distraction – Attraction – Destruction.

If someone watches football when they are supposed to be spending time with their family then I expect that person will have conflict in their family — Distraction – Attraction – Destruction.

If someone watches football when they are supposed to be worshiping God then I expect — Distraction – Attraction – Destruction.

Go ahead and watch football when it isn’t distracting you from your responsibilities.

If I liked football the way some people do then I would certainly watch it. But the moment it distracts me from what is right to do then I would turn my head and my heart away. When it comes to the cheerleaders, they are always a distraction from what is right. So whether it is football or a cheerleader, don’t let it remain a distraction.  Do what is right. Turn away from a distraction. Just say “No!”  It is a simple technique that works for me most of the time.

fleet·ing, adj.
passing swiftly; vanishing quickly; transient; transitory:

I’m 55. I used to think that was really, really old, like back when I was a teenager. Now I look back and think, wow. Here I am-old. The people that I thought were old, like my mom, are now really, really, really old.

It’s all relative, isn’t it. I guess when you are 5 or 6 you might think that a teenager is old. I don’t know; I’m too old to remember.

I have a lot of favorite verses in God’s Word.  They are an enduring encouragement to me.

In Isaiah 40:8 and 1 Peter 1:24-25, we see this:

“The grass withers and the flowers fall,
but the word of our God stands forever.”

I think that is what I’d like this written on my tombstone. I will live forever based on the promises in God’s Word. But my body will wither and fall. I want anyone seeing my tombstone to know what is important and what is not.

I’m tired. My constant pain is very much like a thorn in the flesh to me.  I have to live life in spite of it. (I couldn’t begin to express how difficult it is to do so.) I really want to go home to Heaven. It is certainly better by far.

Even though I have constant pain I also have God’s enduring grace. It empowers me to take the next step even while in pain. Without God’s grace, there would be no power and no hope. Praise God for His moment by moment provision!

Maranatha! Lord Jesus, come!