Category Archives: life with MS

Child care, life with MS, Noblesse Oblige, value of life

Noblesse Oblige

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From those to whom much has been given, much is expected.

I often look at my life and think there is no way I can ever do enough to deserve the life I live.  I live in one of the richest countries ever to exist.  I get to live a relatively well-off life even by the luxurious standards of the U.S.  I work in a job I like.  I come home to a single family house where my beautiful wife and 2 kids live.  Even with my MS, I am afforded access to good care and treatments. 

As I look at all of this, I am left thinking deserve can have little to do with it.  Regardless of whether one believes everything good in their life is earned; I think one still needs to look at why we have it.  Whether we make minimum wage or $100k a year, I think the key question is what we are going to do with it.  Money is only worth what it buys whether it’s a new luxury car or a Thanksgiving dinner for a family in need.  I feel the same way about my time.  It is only worth what I do with it. 

I was asked this week, why we would take in a kid and stick with her through 30+ days in the hospital.  “Aren’t you two tired?  How do you find time for each other?”  I had to return the questions because I have a hard time believing my answer is so different:

“If you were told you would be too tired to have relations with your spouse for a month, but you could save the life of a little girl who is depending on you, would you do it?  Could you chose to ignore a little blind girl, and would you enjoy the other activities as much knowing your indulgence was hurting a little girl?  In effect, what choice have we made that is so out of the ordinary?”

The answer he gave me surprised me. “You put yourself in a position to know the little girl, and you did so after already taking in 2 lovely but challenging kids.  Most of us don’t see the little girl so we don’t see the opportunity costs.”  I wish this wasn’t so true.  I believe we all, as people in the richest country ever, should have more awareness, especially of those in need in our own country.  How can we be so blind to the incredible wealth at our disposal?  As we see the occupy wall street talk about the 99%, I find myself agreeing with much of what they say while wondering if on a global scale many of those marching aren’t already in the 1% (exaggerated, but in the top 25%? Top 10%).  At some point I hope more of us recognize all there is for which we ought to be thankful.

I do think there is some irony of fate in the question of my coworker.  The Headmaster at my high school told me my senior year I would be a great monk or priest if I was ever inclined.  I laughed and said I was unsure of my faith, and more importantly, I liked sex.  Now I long for a time when my wife and I have enough time and energy, but never so much as to make me ignore the good accomplishments of our time and energy. 

Men plan.  Fates mock.  I only hope to someday have the wisdom and patience to find and enjoy the humor.  If I never do enough to “earn” the chances I’ve been given, I hope I do at least enough to…

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life with MS, Writing

Life in Paragraph Form – Why Write?

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“Did you call in the prescriptions?”
“Meet me at the doctors like last week? OK, and we want a 10 peace nuggets for the kids to share and they can have my fries. You get whatever you want. Just don’t be late.”
” So what’s next? Are we ahead of schedule?”
“Have you done the performance reviews? Did you enter them into the system?”
“This program took a huge amount of time and resources last time, is there a way we can speed it up or at least make it less manual?”
“Hello this is Accordant Care. I’m calling for …Yes Hi. Do you have a minute? I’d like to go over your medications and just see how you are doing. Have you made any changes?”
“The auditors need to see documentation and are saying this isn’t documented using the correct words to accurately descibe it. I know you told us about it. Will you link your question and the response? thanks.”
“Can you call about this? The bill doesn’t seem right, and they came late.”

Ah home. Finally at last, I’ve reached home for my reward, a kiss and a few hugs before the next round.

“Daddy, can I have some chocolate milk?” (Yes. Oh we’re out. Want regular? )
“Can I play on the Wii after she goes to bed? NOOO? WHY NOT?” thump thump thump stomp stomp stomp. (Surely we can throw a better tantrum. I mean I want to throw one too as you’ve already ensured your sister will stay awake listening to hear if you are playing)
“Daddy, will you read to me?” (I’d love to, but can I sit for jus a moment. OK now is good)
bow wow bow wow. (what about me in dog)
“Do you pay any attention to the kids when the show is on? You seem absorbed.” ( I am. Sorry.)
“Do you see any difference in behavior with this medicine?” (I answer off the cuff, knowing a more reasoned answer will take my mind some more time. A future multitasking job has been set for background thought)

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The above is an exaggeration of a day in the life, as not all of this hits at any one time. It’s more a function of life rarely throwing only one ball at a time. We all live in the world of constant multitasking. If MS has hit any one part of my life the hardest, it’s my ability to multitask. I’m good for 1 or 2 things, but beyond those, my attention is spread thin, often so thin everything falls through. Some days it feel like the number is never less than 4.

But out of this comes the thought, “How cool would it be to live life in paragraph form? If we are really brave we can expand to the classic paper layout with introductions, meat and potatoes, and a conclusion.” Imagine, each segment of our lives could open with summary of the topic at hand. Every topic would have at least three logical parts, and at the end there would be a nice neat summary or a lead into the next subject. How convenient would this be when it comes to drawing conclusions about the total package? Would my life be a masterpiece, or a See Spot Run repeat?

I was thinking about this as I pondered, why do I enjoy the process of writing? I like it because it allows me to look at an event or few events and pull them into a narrative. As the events unfold, there are too many other stimuli often influencing my thoughts or actions at the time. Kids screaming, dogs barking, deadlines, needed medications, tracking work progress and charting out schedule ahead, etc. all make looking at the thought processes too difficult at the time they happen.

Writing gives a chance to enter into a stasis bubble in my mind. Everything on the outside is kept there. Writing forces my mind down a path of deeper questions which may or may not lead me back to where I started. Sometimes however, it points to flaws in logic or to possible other views of the same problems. Some things just aren’t noticeable to me until I take the time to write them out because it’s in writing them my debate training returns, trying to anticipate and answer potential problems with my conclusion.

Perhaps the oddest part for me is most of what I write comes from internal notice of situations, and the most common cause of the arousal of my internal interest is conflict. I find it interesting because as I look back at posts on here, many of them originated from mixed feelings of one sort or another topic often only tangentially related to my post. For example, this post comes from

“Do you pay any attention to the kids when the show is on? You seem absorbed.” ( I am. Sorry.)combined with seconding the advantages of writing on a message board for people with chronic medical conditions. In this post, I guess I excuse my inattention to the conversation by saying I was just following too many things and ended up following none. Sorry.  

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