I consider this Halloween costume an absolute success. I dressed as the Little Mermaid, and had a sign on my wheelchair to tell people that ALS stole my voice! Ursula, you’re off the hook. Plus, I had some royal arm candy (wink wink).
I am glad I was able to dress up and pass out candy to a gaggle of cute kiddos. Earlier in the day, I had such severe pain that I missed some important doctors appointments. I do take an abundance of pain medication, and it works well on days when my spasms are mild, but when they are more intense, my body locks and shakes so violently that my joints hurt. Afterwards, I am breathless, exhausted, and so sore I feel like I just ran a marathon.
As I wait for the surgery that will fix the problem of my spasticity, I am learning that a key to living happily – with or without ALS, is to practice resilience. I say “practice” because it is a skill that takes intentional, daily cultivation. I used to think of resilience in terms of bouncing back after a major life event, such as getting fired or going through a break up. Now, I understand that resilience doesn’t mean bouncing back. We are not deflated basketballs who will return to their original shape with an infusion of air. Difficult events, large and small, change our shape, so we can’t return to how we were before our day is marred by illness or a boss who shoots down our exciting idea. We are human, so we experience anger and sadness. The trick I use is to give myself a bit of time to feel those emotions, and then set them aside to salvage the remainder of your waking hours either by carrying on with your original plans or practicing self-care by doing something rejuvenating. If you choose a passive activity like binge watching your favorite show, check in to make sure you aren’t just numbing yourself by asking questions like, “Am I enjoying this? Is my mood improving?”
Note that I am not suggesting that you bury your feelings. I am saying not to let them rule. Revisit your feelings as much as you need to in order to be at peace. Put in the time and work to process your emotions. That may mean discussing your feelings with a friend, venting in your journal, or talking to a counselor. Just know that repressed emotions always rise up, and when they do, they tend to feel ten times worse.
Also keep in mind that salvaging a rough day that isn’t always possible. Some days really are ruined by traumatic events – for example, taking a loved one to the ER – but hopefully those are few and far between.