Monday, April 20, 2015


You know how I said I would be Instagramming my trip to Yosemite? Well I kind of forgot that living deliberately like Thoreau means that there is no wifi in the woods, i.e. as soon as we crested the hill out of nowhere and my phone came back to life, I felt rather left out that I had missed the news of Kim Richards' arrest for drunk and disorderly. 

But camping! To mix literary references, it was the best of times, it was the worst of times. It was apparently time to play a giant game of chess amongst the trees. 
If you are planning a trip to Yosemite with your kids, I cannot recommend The Evergreen Lodge enough. But only if you have kids because the place is teeming with them. Happy, dirty, loud laughing kids playing in the teepees, the swimming pool, on the zip line, playing foosball, ping pong...every night there are s'mores around a campfire. But I am not being paid to endorse them, so let's move on.

The funny thing was that there were about 5 other families from our town there, all with kids. Their kids went to the other elementary school, so I didn't know these parents and my kids didn't know the kids, but it was an instant gang of kids playing together. Which was awesome.
I'm beating around the bush here. 
The trip was hard for me. Physically, and because of that, emotionally.
This is the only photo I have of all of us, so Ozzy's gonna have to take one for the team despite that awful face he's making.
See, I am not a camper per se. Or a hiker. But I want the ability to hike if I feel like it, and yeah, I felt like it in Yosemite but I couldn't really do it. Not for long anyway. I am realizing that the damage that MS did to my body is done. I hopefully-cross-my-fingers-please-please-please stopped the progression of the disease, but the existing damage is done, and that means I can't hike more than a few miles without my back completely seizing up.
On the last day, we decided to hike to this waterfall and swimming hole. I had a feeling it was too much, but I didn't want to disappoint the kids and Bryan who really wanted to go. So we went.
It was about 2 miles both ways, up and over scrambling rocks at some points. Halfway through, my back just gave out. I had to drop to my knees every hundred yards and rest. I was sweaty, panicky, pissed off, scared. When we finally got there, we saw that the other families from our town were there, too. Zoey and Ozzy were stoked, but I felt awful.
Now let me preface this by saying: these other moms were amazingly nice. But I did not feel amazingly nice. I felt amazingly dirty, sweaty--disabled, other. I was wearing jeans, a flannel and a beanie, but when we got to the swimming hole it was super hot. The other moms were wearing bikinis. One of them had done the whole hike with her baby strapped onto her chest, and I had just barely made it myself, dragging my feet and tripping. I was pissed. At Bryan for making me do the hike. At these other moms for their long ponytails. At myself for looking like a cross between Mr. Clean and the Brawny paper towel guy with my stupid flannel that doesn't look cute without hair. It just looks butch. I felt ugly, inside and out.
Me laying down on the hike. Because fuck this shit.
But this isn't just about vanity. It's about how I feel, and how I have to accept myself for who I am now. A woman with a military buzz who has limitations.

But before that realization, on the hike back, after we had let the other families hike in front without us under the guise that Ozzy takes a long time, my walking got even worse. And I cried. Snotty, sweaty, horrible tears of I can't do this. I could see the look on Zoey's face, how she was trying to look normal when everything was not, and that killed me. I hate myself for making my family worry. For not being able to hike to a damn waterfall without falling apart. 

But I did it. I fell apart and picked myself back up, probably about 30 times. I made it back to the car.

The kids fell asleep as soon as we got in the car. I just curled up and waited for my cell phone to get service again while Bryan drove the 4 hours home.

About an hour from home the kids woke up famished, so we stopped in the middle of nowhere in a strip mall to eat at a restaurant called BJ's. It was next door to a sporting goods store called Dick's. This brought great levity back to me and Bryan who had barely spoken for most of the car ride, especially when the kids kept saying how much they love BJ's. Stop saying that, guys! Why mom? What's so funny?

Life is funny, that's what, I wanted to say. Life is fucked up and funny and sometimes all it takes is a BJ in the middle of nowhere to sit your family down around a table to talk about how they had the best vacation ever. So even though I didn't, I did, if that makes any sense.
Atta' boy.
If any of it makes any sense at all.


Zakary said...


Nothing makes any freaking sense.

gbm said...

Just take it slow and don't give yourself a hard time. What you went through was HUGE! Hope you had some down time and got to enjoy a marg. by the pool!

Aaron Grover said...

Great job Susannah. You did it. Personally, I have underestimated the emotional/acceptAnce part of the post-HSCT journey. It is tough. And I have broken down multiple times. All we can do is pick ourselves up and keep fighting. And go to BJs.
As difficult as it was, you completed the hike. Be proud, and keep at it.

Nancy Fastenau said...

I remember feeling exactly like that when having my treatments. It sucked that I moved so slowly. Henry said it was so sad to see me go off on my walk each day and move so slow. It gets better, I promise.

Danielle Sciocchetti said...

Don't let it get to you, speaking as someone with MS. It might not be your MS it could be as simple as hicking is f'ing hard - I exercise vigorously, I play roller derby, and hiking kills me. My husband hikes every weekend at Mt Tam, and I was a good sport and hiked with him on Saturday, and it sucked, and I had to stop constantly. But it is because I never do it, and I am not used to any elevation or incline activities. It may NOT be from your MS. When was the last time you hiked? It takes building up. Hang in there, lady!

Danielle Sciocchetti said...

apparently even spelling "hiking" is hard for me. Sorry about that typo...

Petunia Face said...

Thank you all so much.

They say that improvements to existing MS damage happen within the first 2 years after stem cell treatment. This damage might get better, but odds are it probably won't. I swear I am fine if it doesn't as long as it doesn't get worse--I just won't hike.

Aaron, I'll keep at it if you do. We both have much to be proud of, my HSCT brother.

Danielle--This is actually the symptom that finally got me diagnosed with MS. I'm afraid it is from MS, but you're right--I don't hike and some of the difficulty can be attributed to my general couch potato-ness. I actually saw your FB post about hiking. You are such an inspiration with your roller derby and general kick ass life!

xoxo to all!

mumsy said...

Thank you for sharing the good, the bad and the ugly. Keep spitting it all out. It gives us all the strength to be real when the moment isn't pretty. Those photos are beyond words <3

Anonymous said...

You know, you're a really pretty lady, even with all this crap going on. ....unlike me, (I swear a tiny part of the universe dies when I reveal my morning face every day)

Anonymous said...

When did Ozzy get so big? He's almost as tall as his sister.
Yeah, partially I know how you feel and it sucks. You're going to be
the "white elephant in the room" for a while longer, but you've come a long way and you'll succeed.