Living with a significant illness or disability is a job unto itself. Challenges and care requirements of any disorder will differ for everyone, but the one constant is the experience of frustration. Illness can derail work, fun, and everything in between!
For the most part, I’m pretty lucky. I’ve had a disability for so long that not too much surprises me. I expect to feel unwell at times, I expect to experience pain throughout the day, I expect to be disappointed by inaccessibility, and I expect to be misperceived. You could say, I am well trained.
When less than favourable expectations do arise, I allow their presence in my life even though unwelcome. It is not easy by any measure, but I’ve learned I can grant them space and still enjoy pleasant life moments at the same time. For example, I can simultaneously manage pain while visiting with friends or attending a music concert.
The trick is to learn how to focus on your end goal and balance your attention as required along the way.
Recently, a skillful musician was talking about the ins and outs of an EQ mixing soundboard. To me, the untrained non-musician, a soundboard is an electron box that has multi-colored lights and knobs that slide up and down. As I listened to him describe how he adjusts the EQ (equalizing) pre-settings based on the sound he wants to “achieve”, I suddenly understood how that differs from making adjustments based on sound alone.
Note to self, I discovered a new parallel!
Much like my musician friend, I adjust my “life” settings based on the experience I want to achieve. This approach is vastly different than simply accommodating to avoid what I don’t want.
Clearly, for example, I do not want to fall and to ensure that I don’t we have taken great care in planning throughout our home. We have ramped entrances, a chairlift, safety bars, and the like; these are important accommodations.
However, I want more than just safety, I want to live a full and productive life despite my inabilities. To that end, like the EQ soundboard settings, it’s my pre-set routines that support this achievement. It’s big and little things that make my daily life enjoyable and less taxing. I am fortunate, in that I have a wonderfully supportive partner and caring friends; they are my most important pre-sets.
In the end, though, it’s up to me to equalize my expectations and be mindful to make tweaks as necessary.
We all run the knobs of our life’s mixing-board, so if you want something to be different think about your pre-sets.
*Oh, and by the way – this post was inspired by conversations with an amazing band duo, known as the Red Dirt Skinners. Rob and Sarah Skinner. Check them out www.reddirtskinners.com and should they have a show in your area GO see them, and say hi from me.
