For Every Ebb, There’s a Flow

Last time, I talked about the disappointment in not seeing the drive and determination in Cheryl that it’s gonna take for her to get back some of her independence. The thought that she just wasn’t motivated bummed me out and also filled me with my own guilt as her caregiver to properly give her a kick in the ass.

Well the one thing that I always tend to forget about, is the overall general law of the universe. For every action, there is a re-action. Ebb and Flow. Ying and Yang. Up and Down.

Positive and Negative.

Sadly, this has been something that I have only gotten through my thick skull and a thing that I can apply to all life. Whether it’s a lack of a pay check, dealing with Hollywood as a business or, navigating the fucking current presidential administration.

The law of the universe is not “ebb and ebb,” it’s “ebb and flow.” To put it in an often misquoted biblical term, “this too shall pass.” The important thing to remember, when you’re in an ebb, is to not get discouraged or depressed. Remember that the flow is right around the corner.

With Cheryl, drive and determination could be achieved, we just had to figure out what it would take to get her there. Luckily, we did.

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Cheryl gets a Happy Meal.

WHAT CHERYL NEEDED

As many of you who read this blog know, we set out to raise the money for a device for Cheryl’s arm from a company called Bioness. Cheryl’s left arm is basically locked into position and she’s barely able to move it.

The Bioness H200 can help with that.

The premise is simple, the device sends specific electric signals into the muscle that ties to the brain and gets it moving again. Through daily general usage, occupational therapy and incorporating it into simple tasks, eventually, the communication between the muscles in the arm and the brain will restore.

If anything, it’ll at least help loosen that puppy up because she’s in a decent amount of pain when she tries to use it. Keep in mind that she hasn’t used those muscles in a little over 3 years. Ever wake up having slept on your arm wrong then tried to move it? Well she’s awake, but she’s still sleeping on it.

Luckily she’s shown signs that restoring movement to that arm has been possible. Within the past year, very slowly, she’s been able to move it more and more from the shoulder. Lifting her arm to put on deodorant, crossing her body with it and intending to stretch it out.

It’s important that the intent is there because that’s how the pathways to the brain get reestablished.

A HITCH IN THE PLAN

We’ve known about the device for over a year now, but there was just no way we were ever going to be able to get it unless I started selling a shit ton of scripts. I found the device through a FaceBook post, reached out to the sales rep, scheduled a test session and took Cheryl to try it out.

Problem was… fucking thing cost $7,000.

There was just no way we were ever gonna be able to pull that off. There was an opportunity that we might be able to get it through the insurance company at a lower cost, but… in another stroke of bad luck… Cheryl was in the midst of switching from Blue Cross to Medicare and there was NO way Medicare was ever going to pay for it.

I worked with the sales rep to try to get it in under the wire with Blue Cross but we simply ran out of time.

A few months later, the sales rep reached out again and informed that the company had created a hardship program and asked if I wanted to apply to see what the discount would be. I did and, luckily, we qualified for the “poor people pricing.”

That was still going to be $3,500.

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Cheryl testing the Bioness H200

ENTER THE NEIGHBOR

We have lived in this apartment building for a few years now, but really didn’t KNOW the neighbors beyond recognition when passing in the hall along with a smile and a hello. Thanks to a series of events, I ended up chatting more in-depth with our next door neighbor.

This led to her asking what happened to Cheryl.

After a brief summation, she wanted to help in some way. She makes skin care products and wanted to put a little something together for Cheryl. She stayed true to her word and that started us hanging out almost daily.

Cheryl has always been a social person and I know the isolation is part of her lack of drive. Before her injury, her apartment was a constant hotbed of people. The house was always filled with people of all ages hanging out, looking for food or free booze. Mostly just therapy from Cheryl herself.

When she became “broken,” all those people disappeared, which is fine. I know it’s a thing she’s missed though but that’s okay because now she has “people” in her life again.

As it turns out, the neighbor also has a daughter and two dogs. So now Cheryl has a “friend” to hang with… a kid to play with… and two dogs that she gets to help take care of. She’s taken the dogs out a few times now and it’s helped her heal.

The social interaction has helped her heal.

GOFUNDME BECOMES A THING

One day, as we were talking, the neighbor asks what Cheryl needs to get her back. I mention the arm device and tell her the story. She ends up motivating me to try and raise the money, offering to make a sizable donation herself. Getting re-fired up, I created the campaign and left it up to the fate of social media.

I was overwhelmed by all of your support.

In less than 24 hours, we had amassed $1,250 towards the $3,500 price tag. Not only that, but we were trending during the first week of the campaign, which I never expected.

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Once we hit the half way point, we knew we were going to do it, so I reached out to the sales rep with questions. As it turned out, we had to jump through a couple of extra hoops, but because of our long standing relationship (we had been going back and forth for a year at this point) everything was fast tracked.

Within a couple of days, we had financial approval and an appointment for Cheryl to retry the machine. We obviously didn’t want to sink that money into the device if it wasn’t going to work. We needed to be sure.

The re-test appointment went amazing. It felt good. Cheryl was digging it. Everything pointed to green lights all the way.

So, we pulled the trigger. I took the half we made from the campaign so far and Ally financed the rest. It was a Thursday afternoon and flurry of back and forth phone calls. At the end of the process we were assured that the device would be received the following day. A couple of hours later, the field rep called to set up the appointment to fit the device and program it.

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The “device” in its full glory.

It would be that Monday. Kudos to the customer service.

TWO TESTS FORWARD, ONE REALITY BACKWARD

We arrived with our newly acquired device and met with the rep. We went through the whole “training” aspect: i.e. what comes in the kit, what this does, what that does. Yada Yada.

We get the device on Cheryl’s arm and… It does nothing but cause her pain.

Fuck! She had tried it twice with ZERO complaints, but now that we had put the money out there… well, Houston, we have a problem. I didn’t exactly start to panic, but I definitely started to formulate apology messages and phone calls to all of our friends and family that reached out and donated.

What was more worrisome, was that Ally and I had seen this before: Cheryl does great when she’s trying things or when therapists ask her to do stuff, but as soon as she’s on her own, or faced with the idea of having to “fend for herself” at home, she shuts down.

Her first go to? It hurts.

“It hurts” is the universal safe word for everyone but the stay at home moms who overindulge in Fifty Shades of Shitty Writing. Cheryl knows that there’s no faster way to shut shit down, than “It hurts” and she plays that card well.

The problem I have, as her caregiver, is to decipher if it REALLY hurts or she’s just playing that card to get out of doing some shit. This is quite the hard task when you ask, “where does it hurt?” or “what specifically hurts?” or “Cheryl, I really need to know what’s going on” and all you get in response is “It hurts!” or “No. No. Yes. It hurts.”

While this classic Cheryl “I-don’t-wanna” technique has been used to great success in the past, it’s not like we could let it fly this time. Too much money was on the line. Too much of OTHER people’s money was on the line.

After having a conversation with Cheryl, about this very point, she quickly got on board with what was going on. It went from, “it hurts” to “It doesn’t feel great, but I’ll get used to it.”

Perfect.

We also discovered that if she was walking around, there would be plenty of other things for her to engage with so that she wasn’t just sitting there ruminating on the discomfort of the device. This was great news because not only was she working on her arm, but she was now going for daily walks.

She was in. Full force. She was gonna suck it up and do what she had to do in order to get her arm back.

So much so that the rep had given us a plan in order to slowly build up Cheryl’s tolerance to the device. Get her used to it. Eventually we needed to work up to an hour and a half twice a day. Cheryl asked if she could do it three times a day.

The drive and determination was finally upon us!

As great as that may have been, it came with a few new consequences. Nothing bad, but thing we hadn’t considered. It was a brave new world and we had to get used to it…

TO BE CONCLUDED!

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(P.S. The campaign has not closed yet and we are SO close to meeting our goal. You can still donate. Just head over to her campaign at gofundme.com and donate. Any amount will greatly be appreciated and, as always, PLEASE share via social media.)

 

 

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