NOTE: Most people who have MS are susceptible to heat. If our core temperature goes up, symptoms can be triggered. Any symptom can be triggered, but ‘slow down’ symptoms are most common. These include brain fog, loss of balance, physical fatigue, and exhaustion.
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Yesterday was the first day I thought, why am I doing this? I’ve had a great life, but now it sucks, so why am I still here?
The day started with an early morning walk. I got a little sweaty, but when I got home, I walked straight from the front door to the bathroom and stepped out of my clothes into a shockingly cold shower. I shivered and tensed up, my body’s attempt to hold on to the heat, but within 30 seconds my diaphragm loosened, the muscles in my back relaxed, and I settled into the solution.
Twenty minutes later I was on the way to Costco with my daughter, feeling strong. It was that feeling of strength that goes beyond vitality. For me, at least, the greatest feeling of strength comes just after pushing through something difficult. It was not even ten AM, and I’d faced my MS and my MS had backed down.
In the car I had two AC vents blowing on my face. As my daughter drove, I DJ’ed Springsteen’s The River— the same album that got me through a Justin Beiber concert fifteen years ago in Hong Kong. Olivia was next to me that day, too, screaming her head off along with thousands of other pre-teen girls. Yesterday, she tapped the wheel as she drove and talked about how well I’m doing.
Olivia dropped me at the front door and drove off in search of parking. I got in line to buy a hotdog for her. Standing there in line, I could feel the heat in my core, quietly seething. I thought, great, I’m pushing through. Just like everyone told me in the week after my diagnosis, I’ve Got This!
Except, I didn’t have it. IT had me. I made it through Costco with pauses to cool off in the vegetable cold room and the dairy cold room. We made another stop on the way home, to pick up ahi poke from our local grocery store, and as I stood in the self-checkout line I resolved to make it back to my condo and into my shower without asking for help.
I don’t remember if I asked for help. I don’t think I did. The shower propped me up, and like an idiot, I resolved to push through. I made it to my chair, my La-Z-Boy, my little slice of heaven. Time passed. I don’t know how much, but I remember sitting up, thinking I could make it back to the shower without asking for help.
I made it back to the shower without help, and then I made it into my bedroom, but then I fell over the corner of the bed. I made an embarrassing, involuntary noise as I hit the ground. I heard Staci and Olivia race from the living room and fight with the bedroom door. It’s a 65-year-old pocket door that requires finesse and patience, and the door’s stubbornness gave me just enough time to get onto the bed and act like I had only nearly fallen.
It was 1:51PM, and I was DONE. My face hurt. My right leg, that spot on the back of my thigh that I believe will grow until it puts me in a wheelchair, was tight. I was fatigued but not exhausted. Not even tired, just spent. When the pain pill hit, I fell asleep.
I woke up when Staci brought Frankie and Jojo in from our nightly neighborhood dog party. A neighbor sat with us for a while and I felt OK, or at least alive. I didn’t notice when he got up to leave, but I heard him at the front door and I made it there to shake his hand before he was gone.
I thought about another shower, but by then I was sleepy. I went to bed. I didn’t ask for help, but Staci helped me. I don’t remember thinking anything before falling asleep, but I’m certain I asked myself why I’m still doing this.
I woke up. The bedroom window was still dark, so it was not yet six. 4:53. It was time for my daily miracle. I stood up, feeling great — the daily promise my body almost always breaks. I put on basketball shorts and a whispy-thin tee shirt, downed a pint of cold coffee left over from yesterday, and leashed the dogs.
8,450 steps. 5.9 kilometers. Jojo weighs eight pounds, three pounds of dog and five pounds of rage, and her 5.9 kilometers might have taken 100,000 steps. We got home before the dew burned off the grass. I made migas con queso, which a Mexican friend of mine told me his grandmother called migas por perros, toast, and coffee.
Staci woke up happy to have fresh coffee and Olivia woke up grumpy, and all was right in the world for a brief moment. I sat in my La-Z-Boy and my dogs watched me eat my migas por perros. The coffee was good and Olivia’s mood was improving.
Also, the world outside was brighter. The sun had finished burning off the dew and was heating the sidewalks, streets, and everything else.
Within an hour, the heat was oppressive—86 degrees with a blanket of humidity—and only one room in our condo is air-conditioned. I love my bedroom, but I don’t want to be chased there by the heat. Today, though, I let it happen. After eating, I cooled off in the shower, and when I stepped out of the bathroom Staci guided me into the bedroom. She’d made it nice for me. She’d made up the bed and turned on the water-cooled mattress pad she gave me for Father’s Day. She’d arranged the pillows so I might be comfortable sitting up, and she’d turned on the air conditioner.
I made phone calls, talked with friends, browsed real estate listings in San Diego, worked on my taxes, whittled down my inbox, and started writing a blog entry. Several times I came out of the air conditioning for a few minutes to caffeinate or to broil some quick nachos for Staci. Every time, the heat chased me back into our tiny bedroom. Every time I wrestled the reluctant door closed, I felt isolated.
I made it to dog party with Staci at 5:30, but I didn’t last long. I went back inside, right into the shower, and then right back into my air-conditioned cell.
Sometime after 8, I made it to the living room and into my beloved La-Z-Boy. And here I sit. It’s now 9:57. There’s a cool breeze coming through the house. Staci is listening to a podcast about crime and playing iPad solitaire. I’m finishing a blog post. Jojo is sleeping on the couch. Olivia is in her room, watching something on her TV. People are walking through the park outside our living room window. Someone is smoking pot in the park, the scent wafting into our house. I’m feeling good.
It’s now 10:10, and I’m feeling good. PM! 10:10 PM, and I’m feeling good.
I can do this. It’s not going to be great, but it can be good, at least sometimes. It’s not going to end well, but that doesn’t mean every day between now and then has to be bad. I have people who love me and who want to help me, and I still have value to them.
