Slow and Steady Wins By Chad, Husband, Father, Software Engineer • June 8, 2018
My son was very sweet to me this week. He went out of his way to be extra kind and helpful. While it felt nice to be shown some love and to receive extra hugs from our youngest of four children, I did wonder what was behind this display of affection. It is a rare treat for Preston to say, “I love you,” especially to me, his father, not because he doesn’t care, but because his autism can make it hard for him to express his more complex emotions. So this week I heard that sweet phrase, “I love you,” pass his lips more than once. While wondering what precipitated this turn of events, I reached for the refrigerator door to extract a cold bottle of seltzer water. That’s when I saw it: an invitation to his good friend’s 10th birthday party at the end of that week. Now I understood. I lamented briefly while the true cause of our previously unexplained joyful week sunk in. The timing made sense to me now. My wife, Lara, would be driving the older children to another event that day, so Preston had to turn to Dad to help get him to the birthday party.
The day of the party arrived and Preston, with gift in tow, was loaded into the car for the 20 minute drive to our destination. Arriving to squeals of joy, the repetitive thunder of bowling balls pummeling their prey into submission, and the smell of stale pizza wafting through the air, we approached the counter. When asked, “What size?” I looked at Preston’s feet and called out above the commotion, “3, please!” Properly equipped and bowling ball in hand, Preston watched in awe as older kids hurled their orbs of destruction down the lanes to assault 10 thin white pins standing in formation some 60 feet away. The scoreboard not only showed which pins had met their fate, but it also flashed the speed at which the bowling ball was thrown. 30, 35, even 40 miles per hour. This became another goal for the kids. Higher speed often yielded very few conquered pins, but still produced feelings of unconquerable pride to the assailant. “Did you see that?!” one exclaims. “I rolled it 35 miles per hour!” While the speeds at which they reached the end of the lane impressed some, they hadn’t actually accomplished the goal of knocking down the pins.
I saw that Preston had decided on another approach. Instead of slinging his ball with all his might, he carefully lined it up, ensuring a smooth transition from hand to lane. Slower. Focused. Pins did not crash with such great ferocity with this method, but rather, a more satisfying fall took place. I watched the remaining frames to see if his more passive approach would yield a higher booty than those of his young band of birthday partygoers. By the end of the match, scores ranged from low 40s to Preston’s high of 87. Just as with the tortoise, slow and steady won this competition as well, and I realized this approach reminded me a lot of my life with relapsing MS.
I don’t know if Preston has inherited a patient or analytical personality from me, but it is something that I value and am happy to see in him. In my life with relapsing MS I have had to use both traits in order to fight the challenges I’ve been presented with. One example is after taking LEMTRADA. During my infusion, my body underwent a lot of changes. I had been told that I should be patient so I did not try to immediately jump right back into all my daily activities. I used Preston’s example of slow, steady, and thoughtful practices. My thought was that my body was working hard to adjust, and I had to make sure I didn’t push myself too hard. I wasn’t going to see the results instantly, so I needed to think through my actions to make sure my body got what it needed.
I guess what I am saying is that in life there are times when you need to step back and see if you’re taking the right approach to a situation, and sometimes patience is a virtue. No matter which treatment you employ for your relapsing MS, be thoughtful and allow your body time to process what is happening. Let the full benefits take hold. Oh, and when your son says “I love you,” don’t immediately reach for that cold seltzer. Enjoy it and tell him “I love you too.”
- disability progression
- LIVING WITH RELAPSING MS
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