Standing on Day One of the EKSO trial at Kessler
A week ago today, I was already on my way to Kessler's "Stroll n Roll" Fundraiser to raise money for the ongoing research for Spinal Cord Injury. My dad and I were amped because we were going to see the new robotic legs called "EKSO" being used by a 20 year paraplegic and beautiful Australian woman, Amanda (She had just been sent to my email in a video link from the news). I had no idea how important this week was going to be.....
First of all, Amanda was just as sweet and amazing as she seemed in her tv interview. She was strong and spoke with a tangible excitement about walking for the first time in 20 years. Watching her brought up so many emotions for me, feeling grateful that after only 4 months of being injured I was going to be given the gift of walking again. I was introduced to Amanda, telling her about the 4 day research trial being done at Kessler for the Ekso on various levels of spinal cord injury. Her response was a cheerful, "OH, you're one of the lucky 6!" One of the lucky 6! I thought to myself.....woah that's really cool. I had no idea on this day the extent of the privilege I had been given. Next I saw my doctor from Kessler (the one who had also been Christopher Reeve's physician)...he me asked how many days I was participating in the trial. I told him 4...and he responded..."OH, you're one of the multiples!"......What does that mean? I asked, getting the typical jokester reply..."shhhh...It's top secret...!"
Well, now my mind was reeling with anticipation for the week and the new relationship I was about to form with the Kessler research team.....I'm one of 6...and I'm one of the multiples...not everyone gets to do this! Laurie!....I told myself....this is going to be a big deal! So then it was time for Amanda to show us how she uses the Bionics...it was amazing to watch and hear how satisfied she was with the comfort of standing in the legs and their ability to mimic the natural gate of an able-bodied stride. I was introduced to more people (again, at the time I had no clue how important these meetings were) and was interviewed by the New Jersey paper, The Star Ledger. I was told they wanted to track one of the 6 for the whole trial for an article. "Cool" I thought....and what a plus that the reporter was a pleasure to chat with...connecting with everything I was talking about as far as the arts and healing and the overall experience of being paralyzed. My dad and I left there feeling the buzz of the press...the importance of the trial....and the warmth of the sunshine on that beautiful Sunday in Newark, NJ.
Day 1 ~ Monday.
I arrive in normal Physical and Occupational therapy from 10-12 that morning...noticing that I'm not as nervous as I had expected for my first day with the Berkley Bionics team for Ekso. I then arrived upstairs to the oh so familiar 2nd floor in-patient therapy gym. I see all of my old therapists and some of my fellow friends who are still there as in-patients. The Ekso trial was blocked off in the middle by rolling white curtains, but with plenty of gaps for the curious to peek in. I was met by the reporter, more cameras and questions, and a new team of therapists. We went through the procedures of testing my strength, sensory, and motor abilities before transferring into the chair where my new opportunity, the Ekso, was lounging. Once I was strapped in and ready to go....they talked me through the "Stand".....counted 3..2..1..."standing"....and up I went with my two hands clutching the walker in front of me.
Wow....I looked out around me, feeling the elevation but also feeling the complete support of the entire room. My arms and shoulders were unnecessarily working to keep me up until the therapists instructed me to relax and find my balance point. Being a dancer, I have been able to keep some semblance of my body awareness despite not being able to feel my butt on the seat or my feet on the ground. Within minutes, they were letting go for quick spurts as I held myself balanced on my own feet using as little "arm" as possible. Next came the first steps.... My job, they tell me, is purely to stay at "home base" which is my balance point... and to weight shift right and forward, then left and forward. The "walking" is done by my Bionic legs and the epic push of the "Step" button (which in this model, is controlled by the therapists.) So there I was, about to take my first step....with a straight face and a calm heart...focused and determined to get the hang of this new thing. With each step, I was amazed by the movement....trying to process the multi-level experience of the moment. Yes of course it was awkward....yes of course it was nothing like feeling your own feet and muscled propelling you forward....but there I was walking toward my father and the many on-lookers in front of me...showing the world that nothing is impossible.
Before I continue on about the rest of the week....I want to mention this word..."impossible" because it has come up for me many times through my journey of recovery. I have come to realize that everything new can be felt as scary, exciting, or impossible. I recall laying in my bed at the Morristown hospital, being asked to sit up from being flat on my back....lifting my chin to sit.... and not going anywhere. "This is impossible" I thought to myself then....I remember also being asked to use a wooden board to transfer myself from my bed into a chair...."this is impossible" I thought once more. Then again...on my first day at Kessler, being asked to sit up on the mat with my feet on the floor while lifting both hands into the air in front of me...I just stared at my therapist with bug eyes and a big question mark for a brain as I thought to myself...."Could this really be possible!?" Well....so far, I have shown myself that Yes Laurie.... change and newness are scary and exciting....but Nothing is impossible..... =)
AND so....the saga continued...
Day 2 ~ Tuesday.
So they told me to wear leggings...and even though I am sitting in a chair....I wouldn't really just wear leggings if I were standing without a little skirt to cover up...so that's what I'm wearing today! The therapists chuckled telling me I am the first skirt to walk in the Ekso. =) They also inform me they were taking away the walker and giving me the arm crutches. Wow! Already? Ok....here we go... So, my first stand was with the walker as well as my first lap around before my arms slipped into the poles which extend my arms to root me down. I realized this immediately...even though I can't feel my feet rooted...these crutches are acting in the same way...I can feel the floor with some part of my body now. Finding my balance point with the crutches was even easier and I felt even more liberated just standing there. I'm noticing, however, every time that I stand how foreign I feel being at my standing height. Everyone feels too close to my personal space...and I feel like a giant! It took me time to realize how being in a wheelchair for just 4 months has created such a gap between me and everyone and everything around me. Things are hard to reach now....and carrying things requires a fine balancing act on my lap as I wheel myself around.....counters are too high....bending over hurts...and hugs are just not that satisfying unless you straddle me and sit on my lap! I miss those heart to heart squeezes!
Day 3 ~ Wednesday.
I had PT and OT again this morning and multiple breakthroughs before going upstairs to my third session with the Bionic team. In physical therapy, my legs and feet were bound with ace bandages to wooden boards placed as supports under my legs. With legs resting on a wheeling stool, I rolled over to the parallel bars and stood up on my own using my arm strength. As I stood there, I asked again..."Is this my normal height?"....Of course it is...but wow I am still in awe of how foreign I feel to be floating this high. The therapist working with me had me hop by lifting myself with the use of the bars to twist my feet side to side and then to move forward in the bars. With little to no assistance, I hopped back and forth the length of the bars 4 times...each hop getting smoother and more confident. This was the beginning of getting me into leg braces which may not be so high tech as those robotic legs, but they will get me up on my feet and using a walker to eventually propel myself on my own. Next, in Occupational therapy, I was on my third day of trying to hold myself in a wheelie for more than 10 seconds. Today was the day. I not only held the wheelie in a huge loaner chair for a minute, I was able to roll forward and turn myself around in quarter and half turns in a wheelie as well! Boy was I ready for day three....
Again, I wore my leggings and lil skirt outfit...gosh was I starting to feel like myself...back in some Laurie flair and up on my feet in the Ekso...my imagination running wild...eager to get my toes back in rhythm with the beats that are always running in my mind. Today they were ready to stand me up using the crutches...we were moving forward faster than I could have imagined. I was grateful that neither I nor the therapists had set a previous expectation for the trial...as far as I was concerned...every moment was creating magic and POSSIBILITY! Standing with the crutches was again, easier and more natural than I could have imagined for such a young version of the sleeker, even more graceful models to come. The triumphs of the morning gave me confidence and hope that again, I was only moving forward in my recovery and healing....one baby step at a time. On this day I called my own steps...something they hadn't done yet with the others in the trial...I was connecting my rhythms and intuiting when to step...all I had to do was speak with strength in my tone.....owning and controlling my walk. super cool.
Day 4 ~ Thursday.
Bright and early, my dad and I arrived at Kessler at 7:30 am...I was transferring out of the car and into my chair just as the sun was rising over those familiar trees that used to call to me from my room as an in-patient. I took a breath and soaked in the sun...feeling good to be early and further along in my journey since those days that prepared for for this moment. We started walking at 8:30 and I called my own steps again....finally feeling a smoothness and flow to the Bionic Robot. My body started to leave the hands of the therapist's guidance, meaning I was showing signs of becoming independent with the Ekso. At around 9 am we took a break for lunch and I had an uplifting conversation with a fellow paraplegic who was also participating as a "multiple" in the trial. He was telling me that after 2 years, he had never been told about a gym close by to our area where walking therapy is readily available. I am on my way this thursday to check the gym out myself....he was telling me how this has helped him to come out of the lowest depression he has ever experienced....how wonderful it is for me to have these things immediately after "going home."
On this day, things were really sinking in for me...I went to that same space I was in the night I fell and was lying there in the dirt in awe of those around me. I saw how every single person around me was an integral part of a bigger purpose...we all had something to offer to the other...some lesson..some thought...some _?__ that affects everyone else in a deep and profound way. It was a feeling of pure joy and love for the knowing of order that exist behind the scenes...that mystery that brings us to just the right place at the right time with the right people.
By 11:30 I was getting all wired up to be the first person in the Ekso to collect data for research. This was the first trial as Ekso will be traveling to other rehab centers and doing more collecting through December. I had sensors all over my legs to detect muscle activation...I had a pulse reader on my finger to determine changes in heart rate...I had camera markers that are normally used in film making to create a digitally animated movement from a real "live" movement, I had a video camera for the press strapped to my chest...and a room full of researchers, press, doctors, therapists, and my own father. We got up on the runway and I went through the tests which eventually recorded every step as I walked up and down. Each step was making history, I thought....and then one of the therapists asked me in a whisper..."Would you like me to get the full length mirror for you to see yourself?" I knew instantly how I would react to seeing myself...and said YES. I felt myself jump for joy and weep in amazement at the sight of myself all wired up in a robot...but still seeing through it all to my body standing up tall and just as perfect as could be. I walked the length of the runway to myself...feeling the tears well up in my eyes as I got closer and closer to my own reflection. The engineer stood next me in front of the mirror and said..."This is the most emotional I have seen you..." "Well," I said, "Its a different experience to seeing yourself in a mirror as opposed to a video."
And that was that. Soon I was back down in my chair wheeling towards my last video interview for the press feeling truly and utterly blessed to be me. I knew I would only continue to be asked about these kinds of trials...that this is technology that is going to change the word "Disabled."
I'll never say never. Instead, I'm keeping this memo posted in my head....
"Laurie...no matter how scary or impossible things may seem...you are safe...and you are allowed to stand up and step steadily along the path of limitless Possibility.
With Love and Gratitude....and more to come soon. My blessings to you all! Namaste~Laurie