Road trips

We really didn’t plan it, but my sister and I managed to give our mother a rather rollicking September this past year. She is a robust 85+, and still manages to ride the waves at the New Jersey shore each summer. Don’t laugh. Those pounders can fill your swimsuit with more sand than you can believe if you don’t know what you’re doing.

First, my sister’s oldest, Jen, the non-luger, set her wedding date for Labor Day weekend. This was the first grandchild wedding, a very big deal for my mom, of course. It was a big deal for me, too, my oldest niece, but I was having a hard time making plans to travel there. It would be a long and exhausting trip that would take me days to recover from, because of M.S. My sister suggested flying in a week early, so I could recover, but I didn’t think I could take that much time off from work. I was in a dither about it all. This, remember, is all before The Blitz (the stroke).

Little did I know that my inability to make plans, my annoyance with everyone pestering me to make decisions, my frustration with the necessity to do something was because of this new medication, this stuff I have come to call BrainScar, this stuff that would cause the stroke in a few days.

Wasn’t that great timing? I never had to make that decision about going to the wedding! I was in a coma! Jen’s wedding was planned for the “camp” her stepdad runs every summer in the Adirondacks, which meant I didn’t have to fly cross-country after all. I mean, if you’re going to have a stroke, at least plan it so you can save on airfare.

But the tricky thing was my partner, CF, now needed to tell my sister, Cindy, that we wouldn’t be at the wedding. Seemed polite to let them know. After all, we’d known Jen all her life. But CF knew my mother would drop everything and come racing out to Washington, at the expense of missing the wedding. And she knew I would be not like that (assuming, of course, that I recovered, which, at that time, was uncertain).

Actually, no one knew at this point that I had had a stroke. All they knew was that I had had some seizures. That’s what CF told Cindy. And Cindy downplayed the whole thing with our mother. And, as I understand things, the wedding went well. The pictures sure are nice.

The wedding couple on the dock after the ceremony

The wedding couple on the dock after the ceremony

So that’s how Cindy gave our mom a rollicking September. My part in the rollick (which I just learned is a blend of romp and frolic) came later in the month when Cindy and Mom made the cross-country trip to Olywa for a bit of hands-on healing.

I had escaped from Rehab by now, was free from Fox News All. The. Time., tilting around the house with that good ole’ tennis-balled walker, stammering and stuttering, still eating mostly cottage cheese and mandarin oranges, trying to figure out what had happened to me.

The big activity planned for their visit was a trip to the hospital for an M.R.I. My neurologist had been muttering dark things about me having had a stroke in addition to the seizures, but until now nothing had been confirmed. Where the idea of a stroke came from I do not know, but it was out there, and we were going to look into my brain for confirmation.

It would take an hour to drive to the hospital for the M.R.I., which reminded me of the trips we used to make to the orthodontist when we were kids. My sister and I would ride with our mom to the orthodontist so my sister could get her teeth fixed. I just needed a retainer, but she needed the whole mouthful. My mom drove a 1961 black Volkswagen beetle, on which little worked. The heat was permanently on, and burned our ankles; the speedometer needle one day spun around in viciously fast circles until it flung itself off its spindle and collapsed; and the turn signals beat double, triple, or no time, depending on unknown factors. The car had a real, big, yank-it-back sun roof and German inscriptions. Mom hated that the dashboard said FAHRT instead of START. Cindy hated that we opened the sun roof and sang “O Holy Night” at the tops of our lungs, no matter the season, on our way home. I hated my retainer.

My sister’s shiny rental car FAHRTed fine, no sunroof, no singing, no singeing (of burned ankles), and I believe they were properly impressed by our side trip to Snoqualmie Falls.

The hardest part of a day like this is that I have two different kinds of expert medical advice with me, neither of which can give me a speck of information about what’s going on. The first is the knowledge of the M.R.I. technician, who stares at the inside of my brain for a good 45 minutes or so, but will he tell me whether or not I had a stroke? No, of course not, don’t even ask, because the radiologist has to interpret the film, don’t cha know, and that will take days.

And the other kind of expert medical advice is my mother, who has given me advice all of my life, like mothers everywhere: “Wash that better so it doesn’t get infected.” “Drink all of this tea and you’ll be fine by morning.” “Because I said so.” But she can’t give me a speck of information on this, you see, because they don’t give mothers any information on what to do if their daughters come down with incurable diseases such as M.S. and then have strokes caused by “disease modifying medications” such as BrainScar that are supposed to help them with it. There is no helpful little booklet called How To Help Your Child After A Stroke Caused By BrainScarTM. In fact, there is no information anywhere on how to help anyone who has had a stroke caused by BrainScar.

For the first time in years, I cannot look my mother in the face. Her eyes hurt me, because I know she is looking at me and for the first time not seeing me as her 2-year-old toddler, as her 10-year-old swimming champ, or as her 21-year-old college wunderkind, but as a 60-year-old stroke victim. I know that suddenly all of those illusions are broken for both of us. We are suddenly who we are.

Mom at wedding

Mom at wedding

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7 thoughts on “Road trips

  1. Maybe Chris, that is your calling, to write the pamphlet, How to help your child after a stroke.

    And oh, I remember your Moms car. Funny I can’t remember your Dads’ car, he drove Cindy and I half way to school each day. But your Moms, yes.

    • Dad always drove nondescript big things, no wonder you can’t remember. What Mom drove was memorable! Hey, thanks for the Denmark Terp info–helps to have someone on scene.

      • It’s been fun doing detective work for you and funny how I now live close to the area where your family comes from,

  2. Pingback: Caught by my own simile | Who stole my brain?

  3. Pingback: Driving Me Crazy | Who stole my brain?

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