Monday, July 6, 2009


Some things in this entry are going to sound very dark. Don't worry. Really. Anyway, on to it...

Strange stuff, this weekend. I played a church service, had an unbelievably hard time of it. I've been doing these things for something like 36 years. Challenging? Sometimes, yes. But difficult? Never. But last Sunday was.

I nearly slid off the organ bench while playing one of the hymns, pedaling the last note of a verse. Low E-flat, very easy to reach. Or so I thought.... That has never happened before. Ever. And yes, this organ console is very oddly proportioned, but still... Trying to play the organ has never caused me to slide off the bench.

The "Am I stoned? Am I not?" continues. Recently, I've been having near panic attacks in grocery stores. I'm not afraid of anything specific, there's just... some sort of terror welling up, as I walk around the aisles. I keep reminding myself, "You've done much more difficult, much weirder things than this. This is not a problem." And it's not a problem, really. But still, there's the terror. Sort of.

"Sort of" is getting very old.

There was a very large and significant incident the other day, I had spent too long in a hot room in a not even vaguely comfortable chair, and the MS went nuts and I had a huge upswing in the lower-body numbness, and driving to the bank got very weird, and I was afraid for a few minutes that I was going to have to call someone to pick me up and take me home. Fortunately, sitting in the air-conditioned truck, I think things cooled down enough, I got things under control, and I made it home without incident. But that was a well-past "sort of" panic.

But the problems that I have dealing with playing the organ, playing the service, problems simply dealing with the complexity of the world everything was much harder, and the meeting of everything was much more fruitless, than it as ever been before. I was quite concerned that maybe, "This was it." The end of a career, of a way of life. And as that thought hit me, I thought, I'm not at all willing to go there, yet...

Also quite frequently nowadays, I get up, and immediately get hit with a wave of "Bad idea." Not really vertigo, not dizziness, not light-headedness... damn, it's hard to describe. And I don't know if it really is a bad idea to be walking around, or it isn't and it just feels like it's a bad idea. I sit down, and shortly, I'm fine. But when I get up, it starts again.

"Sort of" clear, what's going on...

Which brings me to the dark stuff. (No, grim as the above was, that wasn't the dark stuff.)

A few nights ago, a thought hit me...

My life is over.

It's not about "adapting to MS." The life I had, the one I was used to, the one where I thought I was in control and "had it down," where I was comfortable and happy with what I could do and what I had always done, and would just keep puttering along with business as usual... is over.

This quote from Meister Eckhart was brought to me, courtesy of a friend's Facebook page; not that night, but very soon thereafter: "To be what you must, you must give up what you are."

And so it is: The life that was, is over. I have another life, now. Perhaps it is the life that was always meant to be, and I just couldn't see it, until the MS brought me to face it.

I don't know how to live it.


I don't know how to even begin to live it.


So, this is the new challenge: How to live this new life. Simple, no?

It is as I've often said: MS is no more than the human condition... except writ large, so large that we can no longer pretend to live in ignorance.

We'll see what happens next...


Anne said...

Hello Robert:
I've been a lurker here for awhile and now you have written a post that I can't NOT comment on! LOL

Any of us MSers who are in a profession or possess a certain skill in which we excel, may have to come to the day when our level of excellence falls below OUR par, what we feel is below par. And you are not alone in that, Robert.

I have over 30 years in medicine, starting at the top of my profession and each time I plateau'ed where I could no longer perform, I would bounce down the totem pole to the next level in the profession, just to stay employed - just so I remained a viable, productive person in society and homelife.

I managed to bounce to the bottom of the totem pole two years ago and reluctantly allowed myself to go on Social Security Disability. After six months of pity parties, I decided that this wasn't for me and asked SSD if I was allowed to work part time on their "Ticket to Work" program. It turns out that I was permitted to make $1000 per month in addition to my SSD. At $40 per hour, that allowed me to work some 20 to 25 hours per month, a task that I still am not able to do. I can handle maybe 16 hours right now and spread out over the month.

The point I am trying to make is: even though you are feeling that you can no longer perform in your profession, there is always another step down on the totem pole - whether it be teaching, private lessons, tutoring, short performances, whatever - as you can see I am not familiar with the levels of your profession!!

Yes, we say farewell to "a part of" what we are, but giving up altogether is not what is in store for any of us MSer's, I believe. One bad experience does not kill a career either....perhaps with more rest on Saturday, your Sundays will come up to your expectations.

Perhaps, a duet on the organ.....I do not know - as you can see I am totally oblivious to how it is done! LOL

I hope you will explore other avenues within your profession (s), and just say "So Long" and not "Farewell".

I've learned to never slam the door, just to close it gently.

You are in my thoughts and I hope your spirits are lifted soon,


Herrad said...

Hi Robert,

Take it easy and find a way to cope with your life now.

Never easy to admit that things have changed and with MS thta will happen often.

Hope you get the time to make the adjustments you need to make to get the mo0st out of life.

It really is best to live in the moment and to enjoy all you can.

Take care.
ps By the way came via Anne's blog

awb said...

Hey Robert - I too come to you via Anne's blog. A lot of us have similar stories, I was Deputy Sheriff in charge of major crime inmates when they came to court. It was a very physical, very strenuous job. I eventually drop all the way down to handling asset forfeiture before I retired. After retirement I went into something much more harrowing, I became a teachers aide in an elementary school!

You asked if living this new life was simple, no? The answer is no, it's not simple, but it's what we have in front of us. I wish you the best, and hope you level out soon, take care.


Denver Refashionista said...

In my first year with MS I experienced almost everything you are talking about. I had a panic attack every day and often puked before work. I got so depressed that I felt like I didn't want to live anymore. I couldn't even think of a reason why I bothered.

I had a driving issue too and it was very recent. Both arms went numb and I got stuck at the airport too panicked to even drive. I was terrified. I thought I might have to rush to the ER. In time it went away.

These days I take Klonopin for my anxiety attacks. It really helps. I still have bad health days too. Yesterday I stayed in bed all day because of vertigo. The difference is that now this causes only minimal panic because time has taught me that I will find a way.

I can also relate to the idea of thinking you might lose something you love. My first question after my diagnosis was: "Will I still be able to become a yoga teacher." Since then I have. Sometimes I still get dizzy in yoga or can't balance but I just back off and rest when this happens. I know I still may lose huge parts of my asana (physical) practice but I trust that even in a wheelchair, I can do something. You are right: life as you know it may be over but that does not mean that other great opportunities do not await you. MS has really changed my life but it has also given me "gifts" I could never imagine.

Hang in there. You will find a way, it just may take time. It probably took me almost a year before I finally could look ahead and enjoy each day again. My therapist said that such things teach us to truly be present so I focus on one day at a time and try to make the most of it. The uncertainty was what caused my anxiety and I found the only remedy was to take each day, each minute as it comes. You will be ok.

Webster said...

Hey there Robert Parker! Are you any relation to Richard Parker? [j/k] He was a tiger. A real (fictional) tiger in The Life of Pi who was a stowaway on a life raft that made it from India across the Pacific Ocean to landfall where he found freedom.

I know it's a leap, from book to life, both of faith and logic, but one all of us with MS must take. To believe that we will be okay on this journey we're on, as we are okay in this very moment, because really, that's all there ever is. And you sound okay to me.

May you adjust easily and well to whatever comes your way. All my best.