This fall marks my 11th year of being sick. What happened at a societal level during COVID is not unfamiliar to many of us who have faced chronic or acute illness. The job loss/financial toll, uncertainty and confusion, isolation and broken connections are experiences we know well. What you once knew and found normal has all of a sudden been torn from you, and you now have no real choice other than to try to adapt and live in this weird new reality that isn’t comfortable or desirable. You go through the stages of grief, think you’ve arrived at acceptance and then start all over again when you face a new question or limitation.
Today I went to the doctor to talk about what this fall/winter may look like for me and how to navigate it. There are no concrete answers. Myalgic encephalomyelitis (chronic fatigue) isn’t on the list of knowns. We just know there are times when I get a cold and get knocked down for several months, and other times when I have one and it doesn’t seem to affect me more than the average Joe. The advice, as usual, is to proceed with caution and live within your limits and what you’re comfortable with. I wish my illness had made the list of high-risk conditions, so I could have concrete answers or be able to prove to myself and others that the caution we’re taking is reasonable.
There are parts of me that deal with the trauma of developing an illness triggered by a virus in the first place. There are parts of me that remember how long it took after first getting sick just to be able to live the life I’m living now. There are parts of me that don’t want my loved ones to have to be caregivers if I end up sicker than I am for several months or even years. There are parts of me that are so sick of being sick and exhausted from being tired all the time, so I don’t want to risk adding more of that to my plate. There are parts of me that want to ignore the fact that I’m vulnerable to long-term consequences and live in the “freedom†of denial. There are parts of me that actually find a lot of joy in living as we are right now, even within the limitations I have.
I’ve been challenged that I’m living in fear instead of faith and freedom. I don’t think I am. I am living in the messy reality of it all. Living in the greys and unknowns. Living in the courage to take risks when I’m comfortable or not take risks if I’m not, even if others think I should. Living in consideration of what it means to be a good steward of my own body and life. I’m living in faith while not putting God to the test. I’m living in this weird peace that knows a healthy fear is a good thing but too much isn’t. I’m living in a constant state of learning, unlearning and relearning. I’m living in the most abundant freedom I can within my circumstances. And I’m living in messy grace and compassion knowing that it’s going to look different for me in my circumstances than it is for you.
The reality is that there is no “One Size Fits All†to this season, not even within the same community, family, friend circle, or diagnosis. We’re all learning as we go and trying to do the best we can.
So how do we support one another when we’re all living under different limitations and freedoms?
I love the analogy of a group going for a walk. I used to love walking, and I still do, but it looks a lot different for me now than it once did. Some of my friends are brisk walkers; others use a walker, cane or wheelchair. I take long pauses and can only do short jaunts or, if we’re strolling the Botanical Gardens or touring a city on a road trip, I sit in a wheelchair for most of it so I can experience as much as I can, and in those moments a loved one will push me.
When we go out together, we match the pace of the slowest member and we do whatever we can to make sure we all have the fullest experience possible. That may limit the quicker walkers and may humble the slower ones, but it’s the way that we can best enjoy our time together and build our relationships together. Do I expect them to walk as slowly as me when I’m not around? Of course not! That would be silly! But the reality is, if they want to be with me, they either walk more slowly or figure out a way to help me enjoy their speed without detriment to me (such as pushing me in a wheelchair).
At first glance, this may seem restrictive, but really both of these approaches free you up to be with that person and walk with them. And it also gives you more. When we slow down to be with others, we may understand their world better and appreciate the world with new eyes. When we make it possible for others to whip around with more speed than they’ve experienced in years and pop wheelies, we also can bring them joy as well as having a bit of fun ourselves. We gain so much by walking this way… and by living this way!
I hope we all can explore what that means and how that looks in the coming months and years — respect, consideration, dignity, compassion, and abundant joy that comes from working with each other’s limitations in creative ways to gain the freedom to walk and be together. Will you walk with me?
source https://www.programage.com/news/The_Lessons_We_Can_Learn_By_Walking_Together_During_These_Uncertain_Times_1600678811546965.html
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