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Guest Post: What is Normal? by Ellie Skromme

On October 28th, 2017, after nearly 2 months of living in the same building, I rolled out of the hospital doors for the last time. Parked right in front, ready to take me home was my boyfriend’s truck. My ride home was a vehicle I had jumped into with ease many times, and now, I had to be lifted in. He put my wheelchair into the bed of the truck for the first of many times and we drove the couple hours home.

We stopped by our favorite restaurant on the way, somewhere we had eaten thousands of times, only this time, people stared. I had a group of guys ask me if I had been in a bull riding accident, mocking my back brace resembling a leather vest and I wanted to crawl out of my skin. The curb and asphalt to cross the street from where we had parked by the restaurant was cracked and bumpy bad enough that I had my boyfriend push my chair as I held on for dear life.

This was something I had never noticed walking. He teased me, “Didn’t you just spend a month learning how to get through stuff like this?” I wanted to cry. He was right, but it was all just a bit overwhelming for me to take in. Plus, my wheelie skills still needed some tweaking.

We drove down my dirt road to my dad’s ranch, something I had done millions of times, and yet it felt I had never been there before. Never had I ever spent this long away from home. I was still Ellie and this was still my home, yet I didn’t feel like myself anymore.

As we pulled up to the house, I could see there was a ramp that came down the length of about half the house and landed on a freshly poured cement pad where my garden used to be. Brady unloaded my wheelchair and lifted me out of the truck, while my dad snapped a picture of us sitting there. He was so happy for me to be home. I could easily say the feeling wasn’t mutual, but at the time I couldn’t understand why.

To my dismay, I couldn’t get up the ramp by myself. Anger swelled up inside me at my Dad for not understanding how difficult my situation was. How could he think I’d be able to get up this? I thought that this ache I had felt in my chest since that day a month and a half ago would have magically disappeared when I got home but it was still there. I knew deep down that things wouldn’t be the same when I got home but the naive 17 year old girl I was then had a hope that things would go back to normal.

I really needed a moment to take it all in, so I went to open the front door I had walked through trillions of times and found that I couldn’t even get over the threshold. At this point, “fed-up” doesn’t even hit the tip of the iceberg on how I was feeling. Once helped inside, I made my way down the hall to my room, somewhere that had offered me sanctuary in countless bad moments of my younger years. My room had been completely rearranged and gone through to the point where it was unrecognizable. I’d say that was the breaking point for me and I sat there and let all the emotions I had felt that day out in a face swelling moment of tears.

In the next couple months following I avoided posting pictures, I avoided going out in public, and I sure as heck didn’t go back to my life prior to the accident. I had it stuck in my brain that I wasn’t normal anymore; I wasn’t me anymore. It took over a year for me to come to terms with the fact that I am still Ellie. I actually was watching one of my favorite movies, Tombstone. In the movie, while Doc Holiday is on his death bed, he asks his good friend Wyatt Earp what he wants in life. Wyatt replies, “Just to live a normal life.”

To this Doc responds, “There is no normal life, there’s just life.” I had seen this movie more times than I could count but for some reason when I watched it this time, those words hit me. “There’s just life.” This got me thinking even more: what is “normal?” What defines “normal.” Our ritualistic and modern minds picture the lives we see portrayed on TV and the lives that we are taught to live as “normal.” The reality of it is that my life isn’t any less normal than your life.

We all face struggles in our lives. We are all going through something. We all have something in our lives that is debilitating, mine just so happens to be visual and that’s why I struggled with the normality. As unbelievable as it is, I am thankful for my paralysis because of the good it has brought me. Now I will say that some days I let this injury “disable” me more than other days. Some days I can’t even find the mental or physical strength to get in my car and go grocery shopping for the simple fact that I don’t want people to stare.

It’s days like this that I have to gently remind myself that this injury doesn’t make me weird. It does make me different, but we’re all different in our own ways. Spinal cord injuries can be difficult and frustrating but so is cancer, so is PTSD, so is growing up in a place where there is no freedom, or living homeless. Don’t get me wrong, I’m not down playing SCIs, but what I am saying is that living with one doesn’t make you any less normal. “There is no normal life; there’s just life.”

I’m happy to say that now when I go visit my dad, I can make it up that ramp on my own. I also can get over the threshold in his house. Oh, and that bumpy sidewalk that leads to my favorite restaurant? I can wheelie all the way in the door! Giving yourself time to adapt to changes in your life will help you get through them.

Exoskeletons and More

Technology is becoming an important player in the quest to help people with spinal cord injuries regain function. Exoskeletons are a key component of this quest. Recently having been approved by the FDA, these assistive walking devices are finally becoming accepted by the medical community.

Many people with spinal cord injuries dream of one day getting an exoskeleton approved for home use. However, most insurance companies are still hesitant to approve exoskeletons, forcing many to raise the funds for one on their own. Learn more about exoskeletons for people with spinal cord injuries below.

How They Work

Powered by steel and electricity, an exoskeleton helps people with paralysis stand up and walk. Many refer to exoskeletons as ‘bionic legs.’ Most paraplegics are able to use an exoskeleton, and some quadriplegics can use them too, depending on their overall mobility. Each exoskeleton has a battery pack that powers the machine for several hours. Enabling people to stand up and look someone in the eye, exoskeletons can help people with spinal cord injuries in social situations, but they can help in many other ways as well.

Many people want an exoskeleton so they can be independent at home. Exoskeletons can help people be independent and active in their community, too, which is beneficial due to the frequency of wheelchair-accessibility issues in public places. They also help people return to a career that may require standing. An exoskeleton gives people the freedom they once had to move independently and without obstacles. Expect to see more exoskeletons in the public in the coming years.

How to Get an Exoskeleton

In 2014, the FDA approved the first exoskeleton for personal use: the ReWalk Personal System. This design integrates a wearable brace support, a computer control system, and motion sensors, which is now the standard design for most exoskeletons. This exoskeleton comes from Israel and costs $70,000.

If you are a veteran, you have a higher probability of getting an insurance-approved exoskeleton. The VA recently announced its intentions to approve exoskeleton payments up to $50,000. To get an exoskeleton approved for home use, you will need a physical therapist and a doctor with great writing skills to write a persuasive letter about your medical needs, detailing why an exoskeleton would be essential in your daily life.

Although not many people have had been approved for exoskeletons yet, things are slowly starting to change. Also, it never hurts to try!. If your insurance turns you down at first, you can always appeal the decision. You can try doing an online crowdsourcing fundraiser, as well, to raise money for your exoskeleton.

Exoskeleton Manufacturers

There are several exoskeleton manufacturers around the world. Here are the most reputable manufacturers to consider when looking at exoskeletons for people with spinal cord injuries:

– ReWalk Personal System: Designed in Europe and Israel, this was the first exoskeleton approved by the FDA. The wearer must use crutches to operate it. A ReWalk Person System costs approximately $70,000. https://rewalk.com/

– Ekso Bionics: Designed and sold in California, this exoskeleton was approved by the FDA in 2016 and ranges from $75,000 to $80,000 in cost. Ekso Bionics has reported that with continued use of their product, people have improved their overall balance, gate, and fluidity. Crutches are required to use this exoskeleton, as well. https://eksobionics.com/eksohealth/

– Parker Indego: A lower limb exoskeleton made for paraplegics with full torso control, this exoskeleton has also been approved by the FDA. Parker Indego is also supplying exoskeletons to the Department of Defense for a study on exoskeleton benefits in a rehabilitation setting. Crutches are required for use. http://www.indego.com/indego/en/home

– REX Bionics: The only exoskeleton on the market that does not require crutches is the REX exoskeleton from Australia. People with severe disabilities are able to use this exoskeleton, as it is completely self-supporting and is operated using a joystick. Currently, this exoskeleton is not approved by the FDA for home use, but it is approved for clinical use in the United States. The approximate cost is $150,000. https://www.rexbionics.com/

– Hybrid Assistive Limb: Also known as HAL, this exoskeleton is currently only available in Japan and is for people with paraplegia to use in their day-to-day life. https://www.cyberdyne.jp/english/products/HAL/index.html

More:

– Watch: ReWalk exoskeleton device. walking after 12 years https://spinalpedia.com/video/W9JRPBK81Am

– Watch: EMG-Driven Hand Exoskeleton for SCI Patients: Maestro https://spinalpedia.com/video/OvzRa6J5DrQ

– Read our blog: Most Afforable Walking Exoskeleton To-Date Debuts https://spinalpedia.com/blog/2016/02/affortable-walking-exoskeleton-date-debuts/