Risk it

I had a great time tooling around the school carnival on my Luggie.

Life keeps happening, even when you are dying.  And yes, I know we are all dying, but when you have a disease that has an UP TO NOW 0% survival rate it just seems to me that I get to say it with a bit more pizazz.  I am hoping that those of you who are reading this really understand that I have no intention of dying, well maybe at 99, after a really big party where we will rock out to Queen, Little Feat, Lady Ga Ga and whoever else might rock my rocking chair.

I still have all the symptoms I have had, but I am really sick of being sick and have decided to rejoin the living for as long and as well as I can.  To this end I am coming off of medical leave as a Practitioner and have joined the Council of CSL Olympia in charge of Ecclesiastical Affairs.  The Practitioners are all a part of the Ecclesiastical leadership of the Center, an important role as we begin our “open pulpit” process, as we search for our new Minister.

And I am going to Hawaii in May for a week.   I have no idea how this will work.  When I first got sick my idea was that when things got really bad I would go to Hawaii and just follow one beautiful colorful fish after another into the great beyond.  After speaking about this plan my family has some concerns about me going.  I have made a solemn vow that when and if I ever get to the point that I am done, I will let them all know, so this trip is not something for them to worry about in that regard.

My concerns about the trip are more around the going on the plane by myself from Seattle to Kona without a major mishap, getting in (and out, remember my solemn vow) of the water; and just putting on a swimming suit (dressing myself can be somewhat of a challenge) and the whole bathroom thing.

Luckily I am traveling with a dear friend who loves me unconditionally and who has already experienced traveling with me.  I know whatever happens, even if I have to just hang out and eat tropical fruit in the amazing house she has found in my favorite part of the Big Island, Hawi, so be it.  Life is very good.

All of this sounds like I am alive and kickin’, but there are a few exceptions.  I am unfortunately moving into the next phase of bad bladder issues and I am scheduled for more fun with my urologist.  Let me just say that Botox apparently has many uses besides frown lines, and I am about to experience an alternate use.

MSA is a weird disease that does not follow a clear course, and with my main symptoms being autonomic nervous system that really means all bets are off.  Everything that is automatic in the body can be affected, stem to stern. Today it is the stern that is causing me troubles, well, plus the walking thing, but I can use my wonderful Luggie roller to go pretty much anyplace but up steep hills.  And thanks to my husband Chuck I get a great push now and then.  The point is, I keep going.

So I am still sick, but I really, really want to be well.  When I have a good day I will agree to anything.  Bad days are just that, bad.  My choice is to really live big on the good days, knowing bad days will possibly come, but I don’t want to preplan for those.   I go for as much as I can, knowing that I am surrounded by those who love and support me and who also know I can have a bad day now and then.

My guess is that everyone goes through something similar to this.  So whatever your thing is that causes you to feel like you need to hold back on your good days, knowing a bad day could come, this is my advice: RISK IT.  Risk everyday; say yes to things that scare you and say yes to things that could end up potentially break your heart.  If you do not live like this you really can say you are dying. 

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