A fellow caregiver posed a question to me yesterday that was rather unsettling. She asked me this: Do I ever question whether my unstoppable drive to help Patrick recover, and to protect him at all costs, is driven more by fear, than by love?
It was a question that took me off-guard, but one that I felt I could answer without hesitation. “No”, I told her, “I am fully confident that the unstoppable drive to help Patrick, is rooted in the deepest love I’ve ever felt for anyone.” In fact, when people have asked me over the years, “Why did you do what you did?” I have often responded by saying “Love made the decision for me.” Today, it remains the same.
However, I understand and can relate to the thought process behind the question my friend was asking. The way in which fear can so easily dominate our day-to-day lives, can at times make it feel like the driving force behind ours actions.
For instance, Patrick has been walking unassisted now for about 6 weeks. He gets stronger every day, but still struggles with his balance, coordination and gait, and requires at times some guarding. Allowing him to leave the walker behind at Brucker, though the right choice, brought on an increased risk of falls. However with that, it has also brought an increased level of fear for both of us as well.
This has been true every single time that Patrick has reached a new level of healing; moving from being total care in a wheelchair, towards eventually transferring himself from it, getting in and out of the shower, moving to a walker, walking without being guarded, doing more around the house, taking a few steps unassisted and now…walking everywhere unassisted. There is a part of me as a caregiver that internally screams… “No!! It’s too dangerous! Stop!” (This voice would only be satisfied by keeping Patrick in a plastic bubble where he was 100% safe). But I’ve learned to walk in step with my fear, and disregard the promptings of that unbalanced voice.
Patrick had been using a wheelchair and walker for nearly two years, and had only ever had one very bad fall, in which he fractured two ribs in 2014. I had peace of mind in knowing that he had the walker, because in truth he had outgrown it, and it provided him with more than enough stability. The first time that Patrick fell while walking unassisted, he was coming out of Brucker Biofeedback, on his 2nd to last day of therapy. He fell in the parking lot, and was terrified and embarrassed. There were cars lined up with people rolling down their windows; some asking to help, others telling me to call an ambulance (thanks, thats so helpful), and some who were annoyed at the hold-up. I tried to use his fall as a learning experience; encouraging him to remember his steps to get up. But he was too scared and couldn’t calm down. He had a total meltdown once we got in the car.
These are the moments where the voice of fear screams the loudest.. “See? Look what you’ve let happen. LOOK!” But Patrick is amazingly resilient. After that first fall, he was back up on his feet the next day working at his walking again, which helped to quiet down the fear and feelings of self-blame inside me.
He’s fallen 4 more time since we’ve come home. That may sound like a lot, but it’s really not considering he’s on his feet all day every day. I’ve been with him every time, but he’s not always been in my line of sight. His falls happen for me in super-slow motion. As I hear him cry out with fear, time becomes suspended. My breath catches in my chest, and I feel like I’m falling too. In the half second it takes him to hit the ground, I feel like an eternity has elapsed. I want to run and catch him. I grow angry at how heavy and sluggish my body feels, as I try to move it like mud from a chair or the bed. I never make it in time.
He has, thank God, learned the art of how to fall, and as a result has only bruised himself thus far. But we still ended up in the ER two days ago, getting his hip checked out from his last tumble. We sat there wondering if after 6 weeks of work, and finally being approved by insurance, we would have to postpone his #phase4recovery plan. Luckily there were no fractures, so we are proceeding with caution. However, we do so knowing that we are always a fall, seizure, infection, or God-forbid, a head injury away from a serious road-block to recovery, or even being back at ground zero.
My point is that fear is incredibly powerful. It can make you want to stay in bed, pull the covers over your head and cry yourself to sleep in the dark. Patrick and I both have raging PTSD, and while his manifests itself in OCD and irrational fears about Prana’s well-being, mine manifests itself in other ways. Sometimes I have “waking-mares,” where the slightest thing will trigger me to have flashes of horrific images in my mind. For a moment I feel displaced, and then I gasp for air as if I’m drowning, and come out of it. The more anxious Patrick is in his day-to-day life, the worse my PTSD can be.
And then there are days, when I am reminded of the risks all around us. On Patrick’s first day volunteering at PetSmart, he returned from a trip to the bathroom to tell me, rather nonchalantly, that he’d been bit by a dog. My heart rate went from 0-60 as I checked his leg and saw a nasty, swollen bite-mark. Patrick was mostly concerned that I’d ruin his volunteer job by making a fuss, or that the cats he was caring for would get out and be bit by the dog, too.
As I rushed around the store, I was met with the woman who owned the doberman pincher who had bit Patrick. She tried to lie to me, saying that the prongs of it’s collar had pierced Patrick’s skin. Then, after showing her a picture of the bite mark, she claimed that it had obviously been there for weeks. The next thing I knew, I was having a sort of out of body experience. I was looking at myself from afar, yelling at this woman, wondering who I was in that moment. I looked like a vessel of absolute fear.
Somehow, the woman and I worked it out. We called the vet. The dog had all its shots current and up to date. And a week later, Patrick’s bite-mark is almost healed. But it was a reminder to me that I’m his guardian for a reason, and why it is so hard to let go. Without proper medical intervention, he could’ve ended up with an infection, rabies or worse. And without me being there, Patrick would have let the event slip by unnoticed.
There is one more component that makes the fearful love that we as caregivers experience, so difficult to practice gracefully: we have loved from the unique perspective surrounding tragedy and arduous healing. If my friend or even a family member got a dog-bite, or had a fall, I would certainly be concerned. But I would’t feel the panic, and the drowning, suffocating fear that I do with Patrick. I think it has to do with almost losing him. There is as I said in my last blog-post, a preciousness about his life. And as a result, there is an insatiable desire to protect it.
Which brings me back to the original question my friend asked me yesterday, about the nature of fear and caregiving. I’ve learned that while we think of them as opposites, fear and love are sometimes desperately intertwined. Sometimes we fear what we do not know, or what we do not understand. But other times, we fear what we do know, what we have experienced, and what we understand all to well.
Sometimes we fear…because we love
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