My Own Illness
I’ve done a lot of talking and writing about dementia but will turn the focus on myself for this entry. It’s easy to swoop in for a few hours, give advice, lend a hand and leave but what happens when the tables are turned? When I’m the one dealing with the ups and downs of a chronic disease, how do I physically, mentally and cognitively function 24-hours-a-day?
Really 24 hours you say? Aren’t you being dramatic? Nope - actually night time is often the most difficult, after the busy-ness of the day is over and I have nothing to distract myself from my thoughts and fears. And the guilt - should I be doing more to take care of myself OR I shouldn't complain, I have so much to be thankful for. Care providers, I know you can relate!
I recently received news that my new health insurance carrier has refused to cover my medication. The need to request prior authorization for a treatment that keeps me alive has been a regular occurrence since I was diagnosed with a rare autoimmune disease in 2001. The denial came as a shock along with a good dose of fear, anger, confusion and feelings of helplessness, all feelings that are very familiar to my friends who are living with dementia and their care partners.
Lately, I have been trying to rewire the way I respond to situations that stir up a lot of emotion. I’m a planner. I like things to be organized and predictable. It’s so obvious to me now, that this is one of the ways that I have protected myself from anxiety. With chagrin, I look back on times when I was annoyed by anxiety in others. “Boy, I really have it together,” I often thought with false pride.
One strategy that I have found helpful comes from my friend Sigrid Van Heerdon, who is an intuitive life coach. She talks about managing emotions like objects. We can allow them into our space or try to mentally position them a little outside of us so they don’t swallow us up.
Using this approach, I have been trying to picture myself on a road. Experiences that have happened to me in the past (even minutes earlier) are behind me on the road. What comes next is undetermined and influenced by more things than I can possibly control. Unfortunately, I have found that I possess a great talent for coming up with an enormous amount of hypotheticals about what could happen on the road ahead and most are worst-case scenarios.
For me, nothing takes away the fight or flight feeling that I get in that initial moment of discovering or hearing something bad. I feel panic and anger like all humans. I’m also really capable of flying into fixer mode, trying to solve the problem asap to alleviate my distress. I have been told many times by my family that they need me to listen, not to solve their problem.
These days I’m trying to create a little space between myself and all the things that I worry may happen by acknowledging them but trying not to give them a lot of attention. Things feel less tense when I remember to pause, breathe and return to the present moment where I am almost always 100% safe, loved, and hopeful. It’s like driving by things on a road trip. We observe things as we look out the window but we don’t have time or the desire to stop to experience everything. We would never get where we are intended to go.
And what’s the solution? I don’t always know. This is where my personal faith kicks in and I ask for help from God and others. I know that when I create space around and within myself, solutions and blessings are more available and easier to recognize. And even though I want an “ease on down the road” solution, the easy route is not always what is intended for me. Sigh.
One of the lessons that my clients with dementia have taught me is to enjoy the moment. Memory for what occurred a few minutes ago is gone and often the ability to plan ahead is also gone. Most would agree that filling these moments with peace, joy and love is the best medicine. And we don’t need prior authorization to create those!