Category Archives: rituals

Family, family life, family time, rituals, running, Writing

Control Is But an Illusion

These last few weeks have been crazy. So much has happened, and my energy and time left to write disappeared. Still, these past few weeks have had many highlights.

For starters, O ran the 5k cross country race at my high school with me. He finished in 36 minutes which I thought was remarkable for an 8 year old. He was saddened though when the youngest age group for the awards was expanded from 0-10 to 0-13. He lost out to three 13 year old boys. I told him not to worry because if he can finish the race at 8, just think how easy it will be for him after 5 more years. The accomplishment was finishing, something I struggled with after pulling my hamstring when I tripped on a tree root. Still, I pushed him to finish hard running right beside him. The injury just made running for the rest of the week out of the question.

Without running, I find my ability to focus goes to pot. I find it much harder to get the clarity I need to step back and look at how things work and how I work. My mind depends a lot on exercise.

So maybe it is no surprise that as I have resumed my normal routine of running, I come back to writing, if only to summarize the last few weeks. Of possible interest to some, I wrote the letter to Senator Ben Cardin on the impact of pharmaceutical spending and a suggestion to alleviate some of the problem.
A copy of the letter is here.

The best news came this past week as we were finally cleared to adopt K. She has been with us for most of her life, and soon she will share our name and be assured a place with our family. The lady interviewing me asked if she would be our last adoption. I told her we said yes to that question the last two times. So, no, we don’t intend to adopt again…at this time. However our control of future situations is as imperfect as our ability to see them clearly. This illusion of control of the future is still what allows us needed peace to enjoy the prospect of making K an official permanent member of the family.

The blind K is the happiest kid in our family, and we are oh so lucky to have her with us.
The blind K is the happiest kid in our family, and we are oh so lucky to have her with us.

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how we think, Puzzle, rituals

Life’s Puzzle (Chronic Illness Version 1.0)

2 Comments
I sometimes think the process of finding the right treatment for MS is like a color blind man solving a modern day Rubik cube after no sleep for the past 3 days. 
Other days I think it’s a riddle I am right on the verge of solving.  I sometimes think it’s like knowing some parts and being expected to fill in the rest.  If maybe I just had 1 more peace of information, it would be doable.  I imagine the following puzzle:
I know the password is 8 characters long, and I know 5 of them.
What I have is *CD*HA*D. 
What if I had the hint: “The maker of this puzzle likes card games?”
That’s the point I feel like I am at with finding a good routine treatment for me.  I would like to think I could get to the answer if maybe I was given just one more clue.  Maybe if I knew the maker, in an effort to not be obvious, ruled our CLDIHESP because it might be too easy.  If only I knew more about who designed the riddle we face today trying to figure the best course forward. 
The reason I appreciate the thought pattern behind the riddle is to remind myself how difficult the solving process can be if we don’t know from where we start.  Finding the first or last character is a pretty large clue.  Not only is it a third of the puzzle, the first peace allows our minds to search for patterns more quickly.

I like to imagine the above logic and gaps in knowledge are what each of us face each day as we try to plot out the best course, whether it be in finding the best treatment for a chronic disease or picking which class to take.  I imagine a puzzle with multiple possible solutions and even more possible mistakes.  We have to define best and we have to know for what cause.  We all constantly define that first character in our heads as we try to solve our puzzle, and in most of the puzzles of our lives picking wrong leads to very different outcomes, some of which we may hate.  Is the first chunk of the puzzle money, career, family, faith, etc.?  Are the chunks in order of importance or some other order entirely?

Of course the scientific method drilled side of me often finds myself wondering if I even have the correct puzzle, and is it in a language I can understand.  Have I misunderstood clues from life history, studies, religious teachings etc.?  How can I test what I think I know?  Yes, I spend a lot of time in the circular pondering how I (we) think and solve problems.
On the family and MS side, Christmas is coming.  My kids think of it constantly, and their focus is a double edged sword.  On the one hand, they have the inducement to behave, but it’s countered by an excitement too great to be contained by anything save hyper activity.  For example, we got an elf on the shelf this year and named him “Tony.”  Every morning they feel compelled to find him so they can be assured he went to Santa to report the night before (he moves every night after everyone has gone to sleep though he sometimes waves goodbye to me as the night owl).  They are so compelled, going to the bathroom first or taking meds or eating breakfast or any of the other morning activities can’t be started in earnest till Tony has been found.  Given an early pickup by the school bus, this delay is both heart warming and frustrating.  Welcome to the tradeoffs inherent in parenthood.   Add to the annoyance factor their desire to get up and see if Tony has moved which leads to all of the wonderful behaviors of 5 and 6 year olds without sleep.  Still passion for the daily rituals is something I would be loath to take from them.
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For any stuck on the puzzle above, try this one with a similar theme:
I know the password is 8 characters long.
I know the last 6 are **IAEAPA.  So I only need the first 2.
I still don’t know from where I am starting, but if I can figure this out, the riddle could be simple. Knowing the hints from above certainly may help, especially if looking at the puzzle as chunks of 2 characters. 
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