All posts by thelifewelllived@gmail.com

perception of MS patients in workplace, superfiscial extrovert
It’s been so long since I have actually posted to this blog as I find myself posting more on other websites rather than my blog and I hate losing paragraphs posting here). The odd part being I still think of myself as only a superficial extrovert, meaning I readily give information about myself to others just not anything I worry about others knowing. I tend to spend more time thinking about the nature of things and my thoughts on them, and most of those thoughts I don’t share. Every now and then, I’ll share some of the odder end products of the process like below, but I don’t often express the rest. For a long time, I thought I would do that here…but the simple truth is I don’t know how…and I rarely have the energy to put into words the process.
How can I explain my hurt when a higher up than my boss thinks they should go on a trip rather me because of the strain it would put on my MS? I have worked hard to never let my MS interfere with my work or to at least minimize it. Heck, in ways it has made me a better manager. I certainly document more, even if it is to compensate for a moderately bad memory. I’m stuck because I don’t want my job to be altered because of my MS or for me to be thought of as inelligible for travel. This trip to Guam and CNMI is one of those trips many would leap through fire to go on. I want to go…and yet it’s a scary prospect.
That last part is what gets me. I was in a position where I had to push to say “don’t rule me out because of my MS.” Then the trip was lengthened to 3 weeks. Then I was encouraged by my boss to push for 1st class because of the toll on MS. It may take a toll, but heck if I am going to push to go saying my MS should mean I can’t go only to follow it up with a “but pay for my first class tickets because I have MS.” Of course the kicker today is my boss saying he was glad I was refusing to make that push because it keeps him from having to pursue…only to follow up with a push to straight from DC to Guam (20 hours) without a stop over. There are merits to that approach as it gives a full day to recover in Guam before the work begins…but I hope nobody thinks I am a wimp if I admit to a bit of trepidation about how I will feel at the end of the 20 hours. Sadly, I’m not 21 anymore. I still “think” I will be OK.
It’s just when I already worry at leaving my wife and kids for 3 weeks as I see increasing difficulty for my wife at home with the kids, the trip just seems less and less like the great trip it seemed at the beginning. I think I still want to go. I just worry for myself and for my family…and through it all I keep asking myself how much of this is my self questioning going overboard for fee of troubling others? I know I will have fun on the trip, and I will see places I will probably never get to see again. I get to do it on somebody else’s dime too…and I feel guilty for all the trouble others will go through.
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appreciate the good life, back to school, post surgery, wisdom from the homeless

Michael

So here I was having a haggard day, the type of day I either stare off into space, bury my head in my hands, or scream at no one thing. The desire was one where if I could do all three at once I would have. Surely others feel that way too from time to time. I was pissed off at work because nothing I did turned out the way I planned. Some of the things I was trying to do were for unplanned emergencies that had arisen while my mind was elsewhere. My wife has been sick off and mostly on for more than 9 months (was it something I said?). My daughter was in the hospital which was giving my wife a hard time in her roll as nurse super-mom. In short, I was lonely and bitter.

All in all I was having a pretty cranky day. It was one of those days to make Alexander proud. So I walked to the Subway near work which was running an “Any foot long sub for $5” special. As I approached, I saw a homeless man pacing back and forth in front of the entrance. When I got up to order, I realized the sub I was ordering was $3.87. For a little more, I figured I get the foot long and invite the homeless guy in for a sub.

That was one of the more interesting lunches I’ve ever had. Michael kept insisting that he “just has to hold on because God is good and God says the word is good, and the word says the world is good so everything is going to get better because he just has to hold on because…” Most of my questions to him came right back to this indomitable if slightly altered mental state. He wasn’t unhappy. He was simply an elderly black homeless man. I talked to him about finding a shelter and asked if he had been up the road to the church. He said he would try. I think he was surprised that he was allowed to use the restroom, but I assured him he was a “customer” as he was eating a sub I had bought. It’s the little things.

What put my day in perspective was when I asked him “If tomorrow were to be a better day, what would it look like? What would make it better?” That started another round of well “I just hold on because…” That was a little sobering for me, to realize that here sits a man with full confidence that tomorrow will be OK, but he has no idea what is “better” or even “good.” Talking with him on a crappy, some what misty rainy day that matched my mood made me realize even when things feel like they are bottoming out, at least I live a life in sight of what I want. Oddly, from a man who has so little but outwardly expresses so little I recognize as hope, I became thankful that I still have hope for things to get better.

I ran into Michael again the next day out side Popeyes. He seemed shocked that somebody knew his name and called to him. I asked if he had found a shelter, and he said no. He had gone to the church and the police, but all he had was a list of shelters too far away to walk. He wasn’t sure if they would even have space, but “the world is good because the word is good. So just keep on holding on.” When I mentioned going to the library to use their computers or phone to try and find a shelter, he said “Can you drive me?” I failed. I said no because I had walked over so I didn’t have my car, and my work was crazy busy. Sorry Michael. I should have taken you. For what it’s worth, I have a homeless shelter hotline number in my cell phone now. If I run into you again, I will make the call and get you there if I can. You got 2 meals you needed from me, but not the ride and the time. I got a different perspective on just how bad my crappy days are. I got the better end of that bargain.

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Side note, A is out of the hospital and off oxygen along with being off some of the other 20 different meds she came home on. Today she’s even going back to school for the first time since her surgery. Our whole family is back at home, and crazyness has somewhat returned. O is back to be being crazy in his own house instead of going from house to house for 2 weeks. Yay. Good family chaos is a blessing. See, my bad days still remained within spitting distance of better days.

Heck, I knocked a full cup of water off my desk yesterday and it landed right side up more than half full. I’ve always said I’m lucky. I called people over to my desk to see my amazing spill. Sometimes, it just takes a little effort to recognize the truly spectacular in what would ordinarily be a cursing moment.

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