Eyes Wide Open

A Perspective From Within


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The only place where success comes before work is in the dictionary. ~Vidal Sassoon

I asked my Miami PT therapist, Carla Ruhl, to write something about the various activities that I’m doing at therapy and the strides that I’ve made. It’s interesting to see my progress through someone else’s eyes, especially someone who knows the technical aspects of what my level of injury will yield. I’m my worst critic. I’ve always been, and I get disappointed about my therapy successes when I should be celebrating them. I know that I need to be more positive about how far I have come considering the catastrophic injury that I had, but that’s easier said than done. June 11th will be my one year anniversary for my injury. If you had asked me when I was in the hospital what I would be like June 11th 2013, I would’ve told you I would be walking and back to work. I know that my expectations were probably not reasonable, but I might not have gotten to where I’m at today if I didn’t shoot really high. After reading Carla’s note that she sent me for the blog, I’ve realized that I truly have done some incredible things, and I need to give myself more credit…

These are Carla’s words:

When Mary asked me to write something about her so that she could put it her blog, I wasn’t surprised. From the first sessions that we worked together, I knew she’d be different.

She’s the type of person….type of patient that inspires you…pushes you. She’s sassy and remarkable in many ways. I could see from our evaluation that she already had a particular presentation allowing her to feel below her level of spinal cord injury (very lucky). Considering the extent of her injury I knew what expectations I had for her. But she’s accomplished those and more. She also has this attitude…knowing what she wants….not taking no for an answer.

In 25 years as a physical therapist I have had the experience to work with and know several “SUPER quads”. Can there be something such as a SUPER SUPER QUAD ?. It’s not really tangible…she’s just doing things that are amazing….activities that have me asking “where is that coming from because I wouldn’t expect that from my muscle testing scores ? ”. With each new challenge I give her, she says “lets do it”….she wants to perfect her movements, her new exercises. As you’ve seen in the pictures and videos she’s moving throughout what therapists call the neurodevelopmental sequence (in simple terms, they are the movements that helped us as children develop strength, stability and mobilty….movements that trained us to move from laying on our backs to our tummies to crawling and in time, walking). I hope that this will be the case but…I can only say that we need more (it’s so redundant isn’t it ?…always wanting more). More function, I mean, in the legs to accomplish this full neurodevelopmental sequence but for now…..Mary’s abilities are AMAZING ! She has developed postural strength, balance and function that considering her level of spinal cord injury surpasses our expectations.

We will continue to work…continue to work on sit to stand transitions (who knew ?)…standing balance (WOW!). I look forward to our intensive 4 hour sessions…her desire to work hard… her willingness to push the envelope inspires me…inspires those around her. As I have read in her blogs and have had the honor of meeting her friends and family, I have come to understand that she has always been this intensely charged woman. Thank you Mary.

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Every Lesson Forms a New Scar

There are so many residual effects to a spinal cord injury (SCI as I will now refer to it) and I was definitely starting to feel them. Like I’ve said in the past, the fact that I can’t walk is not the only thing that I have to overcome.  Some crazy physical stuff was starting to happen; things that I never ever would have imagined. Prior to my injury, I quit smoking, worked out with a trainer 4 times per week, didn’t eat meat and had an incredibly healthy diet. Fast food and junk food were never part of my vocabulary. Earlier in the year I had a full physical that came back with glowing results. My father had many health issues that terribly decreased his quality if life.  I wanted to make sure that I did whatever I could to not end up like him. Well…this was the start of some serious shit that will directly affect my quality of life, so much for best-laid plans.

First off, I had what is called a Foley catheter in. Anyone who’s ever been in the hospital knows what this is. For most people, the catheter is used for patients who cannot or should not get out of bed to pee. In my case, the muscles that control my bladder were paralyzed and the nerves that control the sensation that tells me that my bladder is full are not able to find their way down my spinal cord. What this means is complete loss of bladder function. I’m not sure why, but that thought really never occurred to me. I guess no one told me or maybe I just didn’t understand. Either way, I was screwed. I was so consumed by the fact that my legs and hands didn’t move, that bladder function, or lack there of, was not even on my radar. After all, I had a Foley in to take care of business so it wasn’t a concern of mine. Well, a reality check was about to happen. Shelly, Dr. Green’s clinical nurse broke the news to me that the Foley catheter had to come out. Great, so what’s the catch? Well, I will have to be catheterized by someone, and eventually that someone was going to have to be me. Also, if that weren’t bad enough, it would have to be every 4 hours, or Q4 as they call it. This was one of those “what you talking bout Willis” moments.  Seriously? Someone has to empty my bladder for me? I can just kiss any sleep goodbye. It was bad enough that I had to be turned every 2 hours, now I will have to have my bladder emptied every 4. At this point, it would be easier to tell you about the functions that I had left rather than what I have lost. The list would certainly be shorter. This really sucks. And it’s not the end of the shit storm called my life that makes me so totally screwed. There were other unimaginable things looming on the horizon that I would have to deal with that were even worse.

Next up on the SCI  list of residual effects is neurological pain, or nerve pain as most call it. My legs started to feel like there was a major electrical storm running through them. For your convenience, I’ve compiled a list of words to illustrate what nerve pain can feel like:

Burning

Tingling

Shooting

Sharp

Stabbing

Prickling

The nerve pain varied in intensity. At first it started out like mild yet bothersome pins and needles and quickly escalated to something much worse. At first I thought this could be a good thing.  Maybe the nerves were firing, or whatever they do, and my legs would start to work, which means my body was starting to heal. I quickly found out that this typically happens to most people with a SCI. I wasn’t special. Some divine miracle wasn’t happening to me, quite the contrary.

Next is probably one of the worst feelings that started to manifest it. I think it’s called phantom limbs, but actually, no one could really give me a good name for it.

I first experienced this while sitting in the pink chair that I spoke about in an earlier post. After I was removed from the chair and placed on the bed, my legs felt as if they were still in a chair-like position. When this first happened, I tried to ignore it but when your brain is telling you that you are still sitting in a chair, but your eyes are telling you that you lying down, it’s pretty hard to brush off. When my legs started to feel like they were glued together, or better yet, like a mermaid tail, I started to freak.  Kim was there to witness my total meltdown. Uncontrollable crying. Hyperventilation. How was I going to make it through rehab if my legs felt like were glued together? Kim knew right away that this was not one those “Mary, things are going to he ok” consoling talks. This called for a nurse and some pills. Kim had them page Shelly. I wanted her to page Dr. Kevorkian. Kim won out since Kevorkian actually died last year. Shelly came to talk me down. The double dose of Ativan did better than any talk could do. After around 20 minutes I started to calm down. The feeling was still there, but the high level anxiety dissipated. I slept.

At that point I asked myself if there was an end to what seemed to be a very cruel punishment. Being paralyzed was enough agony to endure. I felt like insult is being added to my injury.

Muscle spasms. These are a treat. A muscle spasm is an involuntary contraction of a muscle or in my case, a group of muscles.  Everyone kept asking me if I was getting muscle spasms yet. At the time, I hadn’t experienced them so I thought that maybe I was lucky and wouldn’t get them. No such luck. It was just delayed onset. Let me tell you, they are just awful. They can occur at any time, start suddenly and usually resolve quickly, but are often very painful. You body seems to tighten almost too the point that the muscles could tear. At least that’s what it felt like to me.  My muscle spasms seemed to be brought on by just about any movement. The nurse could turn the light on in my room and I would start to spasm. They are unbearable but thankfully they were quick. The spasms at times contorted my body and made me look like a complete and total idiot…adding to my already glamorous look.