Unexpectedly Not Terrible.


I think of it as Prom Syndrome: if you think it’s going to be the best time of your entire life, it’s probably going to be a complete disaster. The lower your expectations, the better things are going to go.

I approached my doctor’s appointment on Wednesday with the world’s greyest cloud over my head, so naturally, it went well.

Matt and I met with a doctor who was informative, extremely thorough and very positive. We were with her for about an hour and a half, and now we know the following:

> What an autoimmune disease really is.

> What multiple sclerosis is and how it works.

> That my white blood cells are up to no good.

> That there are lots of different kinds of treatments for MS, and how they work.

> That there’s a lot of research going on and things are changing all the time.

I’m not going to try to explain any of that here, because there are better places to get information, but hearing it all from someone who specializes in multiple sclerosis was so helpful. I feel informed, prepared, and worlds better than I did before I walked into that office. It’s not that I don’t have MS — I do — but the situation is far from bleak. We’ll go back in a few weeks to talk about some different options for moving forward, including the possibility of disease modifying drugs. (Yippee!)

Wednesday was a long day. We called on a small army of friends to get John through the various pieces of his day. (He hopes that we leave town again soon.) We left well before dark, just barely made the train, and drove home late from Albany with thick fog and about two feet of visibility. Matt should get a prize for the drive. I was too scared to open my eyes half the time. (Or possibly I fell asleep. Who’s to say?)

Wednesday was also a great day. Friends provided many messages of love and support and a “lady-sized” bottle of whiskey for the train home. The universe provided a warm day for walking around New York City, which is one of my favorite places. And this was the first time in about six months that I haven’t gotten bad news every time I speak to a doctor.

Let me end with a quote from Kate DiCamillo, who writes amazing novels disguised as children’s books:

“You must be filled with expectancy. You must be awash in hope.”

That’s what I am.

13 thoughts on “Unexpectedly Not Terrible.

  1. Katie, while we have only met once (at your wedding), you are married to one of my favorite people, which makes you an important person in my world. I will be sending a plethora of good thoughts your way. So happy to hear that you are in a good place mentally and physically. Thinking of you all, Leigh (Sherwood) Paulin

  2. Katie,
    So glad your appointment went well!! You are such a strong woman, and I have no doubt you will face what lies ahead with courage and grace. Like so many others have said, Matt is one of my favorite Lexington friends, so that makes you quite special as well. Know that I am thinking of you as you navigate your way along this new path. Love, Julie

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