Good Days

I do have them. Days where I can function almost normally even though my ears are screaming and stabbing and my feet hurt and my body is aching and buzzing. I cherish those days.

Last week, I was lucky. I had two days good enough to enjoy some skiing with my daughter.

A good day isn't like the old days. I'm not up at 6 and first on the slopes. We ambled into the lodge around 10 am. I take the time to brace myself for the jarring stimulus of noise, movement, lights, energy. We're out on the slopes by 11. I don't ski straight for 7 or 8 hours, either. There are long breaks. Still, I was giddy at being out there and reminded of how much I love it.

I made a discovery, too. Exercise is very challenging for me because of my feet. My nerve endings don't sense the ground beneath my feet well anymore. This can make me wobbly or even cause me to fall. I have had injuries which I didn't even realize until later, because I didn't recognize the new pain. All of this makes me wary of navigating terrain and particularly wary of anything that requires rapid response.

Take those feet, bind them in a sturdy boot that supports the ankles and put me on skis where using the soles of your feet to navigate is no longer necessary and I'm mobile again! It hurt like the dickens. The entire surface of my feet and ankles up to the top of the boots felt like they were being rub-burned. I opted out of renting a helmet for this reason. I think the resulting headache/fog would have been more risky than any fall I was going to take on easy slopes.) Still, the controls for navigation were coming from the rest of my body and I could manage it. As long as I wasn't having cognitive issues. (Thank goodness for good trail signs! It didn't matter where I might have planned to go. At least I could follow signs to keep me on appropriately challenging terrain.)

Thus, I was able to take my daughter on her first chair-lift ride. To be able to do this was precious.  She's 10 now and there are few years left to share wondrous firsts like that. She once again displayed a strong character trait: her ability to express fear in the face of something she's driven to do and to move through that fear and attempt her goal. She was nervous about getting on the lift. But she did it and she loved it.

The next discovery: being on the mountain was the most peaceful time I've had in years. This was spring skiing on a weekday in New England. The slopes were very lightly populated. In the afternoons I had several runs to myself. It was exquisite to sit on the mountainside and take in the near silence of it. I didn't want to get off and re-enter the world of sensory assault. I skied to the last run possible each day.

I also crashed immediately afterward. It was excruciating getting back to the room and within minutes I was asleep. I did wake up for dinner, but was then so symptomatic I became terribly grumpy. Ok, nearly murderous. I just want to kill everyone making sound and movement. My ears can't take it. My head wants to explode. Then I can't get to sleep again. Its a vicious cycle.

Still, they were good days. She took a lesson and then wanted to show me what she learned. It was the end of a day and she was tired. She fell soon after starting down the hill. One of those falls where your skis stay flat and they keep sliding. It was only a green (easy) slope, but she panicked. I guided her down the rest of the mountain as she held onto the end of one of my poles. It took us an hour and half. Resting for her to cry and recover. Assessing, when people asked, if we should get ski patrol to take us down. She stubbornly wanted to keep going. She even skied the last bit by herself, her confidence restored. It was a good day because I could do this for her. My symptoms could be pushed enough into the background for me to be there for her in the way that she needed. I had the patience, in the lower-stimulus environment of the mountain, to hang in there with her through her bouts of tears and self-deprecation. To give her time to pull herself together and keep on trying.

The next day, we got on the learning quad and did two runs down the bunny slope so she could regain some self-confidence. Then, we went to the very top of the mountain and she skied all the way down by herself, with a moment of assistance on a narrow steep section. She was very satisfied. She was done with skiing for the day. She went swimming with her dad* for the rest of the afternoon.

I was very satisfied that we'd had this adventure together. I skied the blue (intermediate) run through the glades a few times that afternoon. No one else was there. I kept going back, so I could sit with the trees and the embracing quiet of the mountain. I was cherishing those two good days. Soaking up the energy of it, as if maybe I could store it up to fend off the sensory overload that I knew was coming when we headed back into the bustle of normal life.

It was two good days.

* It is important to note here that these days would likely not have been so good without the support of her father. With someone there to help her get up and dressed, to track all the equipment and accoutrement, to drive, push through crowds, keep momentum moving in the intended direction, etc. The biggest thing is that he's there to take over supervising her when I need a break. For someone with my neurological issues, having this kind of logistical support is a minimal requirement to functioning. I can manage at home in an environment where she can occupy herself while I nap and there is less stimuli to manage. But in an unknown environment, where so much more has to be managed and tracked and navigated through, I wouldn't last more than an hour or two before fading out.