Making our way through life!

While trying to get through some difficult years when alcoholics were a problem in my life I learned the serenity prayer:

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

This is an interesting little prayer, whether you believe in God, a god, a higher power, a being more powerful than yourself, or even something else…… replace God in the prayer with “Oh Great Canoe Paddler”, or whatever floats your boat.

But the essence is to accept things that cannot be changed, be strong enough to change things in our power to change, and, interestingly enough — I will paraphrase a bit — to not be so stupid that we cannot tell the difference.

Reworded to “Mark-Speak” it would say:

Give me peace
to accept what I can do nothing about
power and bravery to change what I can
and the ability to see the difference between change and acceptance.

When Dad died I could not change the fact that he had cancer, that he went to a care facility for the last several days of his life and that he eventually died. I also could not change how I felt at the time but I could accept that I had feelings and eventually I could recognize that I could change those feelings into happiness by remembering all the good things our family did together — like running out of gas on the Mossyrock hill or cutting the junipers out of the hillside at our home in Kirkland………or learning how to fly fish and tie my own flies and catching fish when others were being skunked……or being taught how to cook, sew and do my own laundry.

All of the above shows each of the three elements.

How does one accept something that happens to them when there is nothing they did to cause it, nothing they can do to change it and whatever they do it will just get worse and the only hope is some experimental drug that MIGHT help?

See http://www.ninds.nih.gov/disorders/inclusion_body_myositis/inclusion_body_myositis.htm for what follows in this article.

Damn, that sucks, doesn’t it?

No cure, no treatment, and it is going to get worse.

Damn, THAT REALLY SUCKS, doesn’t it?

OK, I’ve got it. Four neurologists say I have it, a muscle biopsy confirms I have it. And, I have probably had it for about three years (when the first neurologist said I had it and suggested a muscle biopsy). And I had it two years ago when the second neurologist said I had it. And, I had it about two months ago when the third neurologist said I had it and referred me to the University of Washington neurologist who said I had it and suggested a muscle biopsy also.

Four neurologists said I had IBM. Each of them said I should have a muscle biopsy. I finally accepted it. FINALLY. Guess I finally took that first step.

But, only one of them (the UW neurologist) said something that led me to believe I might be able to change the outcome of this “thing”.

He told me that a muscle biopsy was necessary to qualify me for any studies or even for a “break through” drug being developed. See http://www.nibr.com/newsroom/stories/2013Aug30_BYM338-Breakthrough-Therapy.shtml and then http://clinicaltrials.gov/show/NCT01925209 for good information on this drug and the study.

So, I accept that I have IBM — kind of funny that inclusion body myositis is abbreviated IBM since I am a GEEK and my chosen profession is in the computer world.

I decided to try and change things by accepting that I needed the muscle biopsy so that I might be able to get some help.

But, I have also accepted that I needed other help because things were getting difficult…… a taller toilet helps me get off the toilet, a recliner that lifts lets me get out of the recliner easier, a new patio set with taller chairs and a taller table lets me enjoy the deck, and I have learned that using the ramps to get out of parking lots and into stores is easier. When I do have to sit in a chair or in a booth at a restaurant and need help getting up I ask for a little boost.

Sadness is normal. I am sad that I cannot ride my bike but I wonder what would happen if I was on a tandem bike. There are other examples but I won’t go into them now.

Several things are true. I have IBM. I got the muscle biopsy. I hope I get in a study and I hope the drug works. If I do not get in a study and cannot get the drug I think Ruby and I will go out in our boat and enjoy driving while we search for the best crabbing locations, salmon locations and ling-cod locations….. and I will do what I need to do to get along with IBM — maybe wear a white shirt and dark tie — while crabbing and I’ll try and not be crabby because:

I accept what is happening to me
I’m changing what I can (remember the taller toilet)
and I cannot develop a drug that makes things better.

Mark

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