No walls can keep me protected
No sleep, nothing in between me and the rain
And you can’t save me now
I’m in the grip of a hurricane
I’m gonna blow myself away
(Florence + the Machine)
Hurricane Sandy made a beeline for my house. At least, that’s how I felt. We stocked up on food and water, assembled all the flashlights and batteries, and charged up the emergency radio. My husband flood-proofed the basement and and set up a mattress in the room farthest from all the big trees. We have a gas stove, so we knew we would be able to cook. We were ready.
And I was a mess. First, I stopped paying attention to the news because it upset me so much. Then I worked on a blog post to distract myself until my brain stopped working. Then I rushed to cook things before the power went out. And finally, I fell asleep on the couch while my husband monitored the basement and our power and the trees.
I’ve never experienced so much anxiety before a storm. Part of it was all the hype from the tv and social media. And part of it was legitimate given the scope of the storm and its aftermath. But I was acutely conscious that much of my anxiety was fueled by my powerlessness. What would I do if a tree fell on the house? How would I cope in a noisy shelter? What if we lost power for a week? What if the basement flooded? My journey into pacing has made me painfully aware of just how disabled I am. I no longer hold any illusions about my capacity to do physical work, or to handle stress, or to live outside the normal routine. I do not have capacity for those things. I feel like a prisoner in my home, and the prospect of damage to that home was simply overwhelming and deeply frightening to me.
Thankfully – miraculously – we were fine. We never lost power. The neighbor’s enormous tree fell away from the houses. Our basement did not get wet. Our families were not quite so fortunate. One disabled relative had to evacuate to a hotel for a week while her home was without power. Other relatives lost power when a tree fell on a neighbor’s garage, taking out two utility poles. And a family cottage at the Jersey shore was in the direct path of the storm, and flooded. There are months of paperwork, cleanup and repairs ahead to cope with that. But all of us are safe, and that is the most important thing.
The storm aftermath highlighted the extent of my impotence. My husband moved the disabled relative to the hotel. My husband spent a full day helping to clean out the flooded cottage. Me? I emailed the lawn service to ask them to clean up the leaves and branches in the yard. I was incapable of doing anything else. No one expected anything of me, except me. I watched our family work hard to cope and recover, and my contribution was to answer the door on Halloween.
This Makes. Me. Crazy. And sad, and useless, and powerless, and angry, and afraid, and dependent, and resentful. Why is this my life? How can I endure existing but not being of use? I’m not an elderly woman who has raised her family and contributed to society over many years. I imagine that it is easier to rest and let others do for you, after you have done for them over the years. But I am in the prime years of my life, trapped in a body that just gives out on me after the smallest physical tasks. I sat here, feeling like the hurricane was aimed at a bullseye on my back, and there was not a single damn thing I could do about it.
But I also know I am blessed and protected. The havoc that Sandy wreaked on millions of others is heartbreaking. Others are living the worst case scenario that I feared, and here I sit. Safe. But powerless to help anyone.
Sigh. Swap in my name, and trade husband for mother. She does all the heavy lifting.
You help with these posts more than you will ever know. As a parent of 2 teenagers with this terrible disease, it helps to read of others’ experiences to keep perspective. It can be difficult to believe that a child can be too tired to participate in school or do anything more than recline in bed and listen to a muted TV. But then to read an adult’s account confirms your child’s experience. Today we sadly had to withdraw our eldest from her freshman year of college – she was only taking 3 classes but a virus wiped her out and she has crashed for 3 weeks. She too feels trapped in a body that doesn’t match her will. Living with CFS is a lesson in finding hope in the smallest of things and in recreating our lives…over and over and over………Thank you and may you continue to post and continue to find hope….
Thank you, Char. I’m so sorry about your daughter, and I send my best wishes to you and your family.