Ch. 209 - Billy's Experience 1
By: Billy Rogers
Before I tell you about the extremely interesting and emotional experience I recently had with my beautiful and loving wife, Collie, let me share a few things with you. Remember the electronically controlled RGO that I created and gave to Flora? With the generous donation that Sarah made to my research, I designed and crafted two improved RGOs. One I sent to Flora, and the other to one of Ben's colleagues. He interviewed Flora and me and wrote a paper on my invention. It made quite a splash in medical journals, and I find myself overwhelmed with doctors seeking information.
After seeing Flora walk hand in hand with Sarah, I had achieved my goal. I made it possible for someone with a complete SCI to walk. With my goal achieved, my interest in the project began to wane. However, we were contacted by a multinational orthopedics company, and I licensed my design and patents to them with one condition: Flora would always get the latest model free of charge. Now my ideas are in the hands of engineers who know a lot more than an orthotist like me.
The happy coincidence is that the company I licensed my design to is also the one that Dr. Myra and Mike Johnson licensed their inventions to. Both devices are now produced by the RJ BioTronics division, with Mike Johnson contracted to work on both products. Oh, 'RJ' is correct; it's for Rogers and Jameson, not Myra Johnson. The RGO I invented is marketed as the RJ BioTronics RoGO, or Rogers Gait Orthosis. Many improvements have been made using Mike's BioTronic technology, which interfaces the device directly with the user's nervous system; it's more than I could have ever dreamed of doing on my own. When Sarah sent us a video of Flora hiking in her latest RoGO, Collie and I cried; we were so happy for them both.
The second thing is that Gary and Rita have fully retired, and they are traveling the country in their MCI MC-6 bus conversion. They even sold their home, and when they are in town, they stay in our guest house. With the financial windfall from the RoGO, Collie and I purchased all but one percent of Gary and Rita's ownership in the shop; we didn't have the heart to completely buy them out, and they are still our partners in the fullest sense. The sign above our door will always read 'Rogers and Jameson' but soon it will be hanging above a new door—we're moving.
We are not the only ones moving shop; Joe is moving his orthodontic practice, too. Since we are involved in Leigh's big project, 'The Clinic', we're moving to a larger facility in the same building as 'The Clinic'. It will be business as usual, but we will also be supplying services to clients of 'The Clinic', too. Collie and I will have plenty of help with the young couple, Ashley and Brock, that we recently hired, who are both orthotists. Both are rather reserved and serious, but they have wicked senses of humor and are also pranksters. They fit in well with Marty, a client who became an employee.
Marty was in an industrial accident and broke his back. We fitted him with a series of spinal braces during his long recovery and found out that, during his recovery, he obtained a business degree. After a few years in the business world, Marty decided he wanted to work with his hands, but he can no longer do the work he used to. So Collie offered him a job working in the office and helping in the workshop so we could have a bit more free time. I now have plenty of help in the workshop, especially with interns from the vocational school, and Collie has someone she can trust the office to.
Well, with that out of the way, let me tell you about my very special and emotional weekend with Collie. After getting home from dinner at Leigh's the other night, Collie began to tell me about contracting polio as a child; it's something she has never talked about. She said she barely remembers her recovery; it was so long ago—over twenty-five years—but she does remember her condition being much worse than it is now. It affected her entire body at first, not just her legs and spine. I never knew she was completely paralyzed and on a ventilator for nine months when she first fell ill. She never talked about it, and I never asked, thinking it would bring up painful memories. But look at Collie now—a beautiful and vibrant young woman, full of confidence, and living her life to the fullest despite her differentability. It makes me love her even more.
Collie has never talked so much about her paralysis or Judy's desire to be paralyzed. She told me how she was initially very upset with Judy for wearing her old braces, but then grew to accept Judy's decision years ago. Collie expressed that she is extremely happy for Judy to be living the life that she lives now with her BioTronic implant. She also told me what she remembered about initially falling ill and becoming paralyzed and dependent on a ventilator.
Then she told me what she remembered about flying half way across the world, back to the U.S., in an air ambulance. Collie described her long recovery as movement slowly came back to parts of her body and the terrifying experience of having her tracheostomy suctioned multiple times a day. She thought she would die each time it was done, and being unable to speak, she couldn't express her fear. Collie talked about the tube in her nose that nourished her and the catheter that caused her to have many infections due to the diapers she had to wear because she had no bowel control. Finally, she talked about being fitted with her Milwaukee brace to support her weak and curvy spine along with her KAFOs and learning how to walk again.
Collie got up, went to her home office, and returned with two photos to show me. The first was a picture of her and Judy at the airport, seeing Judy off to visit their grandparents in the U.S.—a trip that saved Judy from contracting polio. The girls looked identical as they still do, except for their eye and hair color, with their long, flowing hair blowing in the breeze. Collie said it was the last time Judy saw her before she fell ill.
In the second picture, Collene looked much different than in the first. She was wearing very bulky KAFOs with heavy orthopedic boots on her feet. Her Milwaukee brace held her head high and tilted back quite a bit—it looked to be extremely uncomfortable. Under each arm were wooden crutches sized for her tiny, seven-year-old body. All the metal, leather, and sturdy boots must have weighed as much as she did. The most striking thing was her hair, or lack thereof. A tear came to her eye as she said they shaved her head in the hospital to make caring for her easier.
The only time Collie showed any negative emotions was when she told me about getting her head shaved and her trach suctioned. I have never seen fear in Collie's eyes before, but I did when she described getting her trach suctioned; it was a terrifying experience. Otherwise, never once did Collie ever seem down or to feel sorry for herself; I truly believe that she loves her body as it is, and even if something could ever be done for her condition, I am certain she would refuse the procedure. Collene is an amazing woman.
We were up early the next morning and decided to have breakfast on the road. Collie went to take a shower, then got dressed while I made coffee. When Collie crutched into the kitchen, she looked as beautiful as ever with her long, wavy red hair, pretty green eyes behind her red-framed glasses, a perfect banded smile with her headgear and splint, a cute floral print dress over her red Milwaukee brace and KAFOs with black wedge sandals on her feet. I don't know how she goes so quickly from her nightgown to looking so gorgeous in such a short time, especially with the limitations of her unique body.
After coffee, I got ready. As I always do when we are going on a trip, I'll be wearing my Milwaukee brace and KAFOs and using crutches. Collie and I enjoy a special bond when I'm braced and on crutches, just like her. As I was laying out my blue kilt and polo shirt, along with the braces I would wear—my traditional brown ones with monk strap shoes—I had no idea what the next few days would hold.
I went to the bathroom for my usual morning routine. I did my business, shaved, and brushed my teeth and braces, which, by the way, have done their job and are simply acting as retainers with my headgear being inactive at this point. Collie loves how I look with braces and headgear, so I'll be wearing them indefinitely. I took a quick shower, dried off, and walked back to the bedroom in my undershorts. Collie was sitting in her power chair, looking as adorable as ever with a warm metallic smile on her face. Seeing her in her chair was not unusual; we always take our power chairs when traveling so we can cover a lot of ground quickly when exploring. Then my eyes glanced over to the bed and my clothes and braces. It was then that I knew exactly what the weekend had in store.
Attached to my Milwaukee brace was a device I was familiar with. Just above the pelvic girdle, Collie had placed a MJ BioTronics device. I had made Gracie her TLSO with a pocket for her device, along with Addison's LSO, so I knew what the device looked like. However, the sample I had to work with was simply an empty case with no electronics inside. With the array of small, rounded electrodes, this is definitely a working unit, or why else would Collie have attached it to my brace?
Without saying a word, Collie simply watched me, smiling with the light glinting off her bands and facebow as I examined the device attached to my Milwaukee brace. It really doesn't look like much: a small plastic housing with an array of small, rounded electrodes protruding from a soft plastic pad with dense foam rubber on the inside to apply pressure to the electrodes.
Now, I don't know what order you put on your KAFOs and Milwaukee brace, but I do it like Collie does: socks, or in her case, nylons or compression hose, then her KAFOs, and finally her Milwaukee brace. It's just so much easier to get our lower bodies braced without our spines being restricted. I reached for my socks and KAFOs, and that is when Collie gently said with a smile, "Billy, milk before coffee this morning, please." Milk and coffee are her pet names for our Milwaukee braces and KAFOs. Without question, but with trepidation and a bit of fear building, I did as she requested and got into my Milwaukee brace first. My dear wife wants to watch me struggle to put on my KAFOs.
Collie then got out her phone, and I knew what was coming next, but I didn't know to what extent. Would she completely paralyze me like Leigh, or would Collie simply have me spend the weekend as she spends every day of her life? I hoped for the latter. Collie very quietly and lovingly spoke, saying, "Are you ready, Billy? You've always wanted to know what it's like, and I have longed for years for you to be able to know firsthand. Now is our opportunity, and I love you so much for wanting to experience this."
With those words, a strange feeling came to my lower body and legs. For less than a second, my legs twitched slightly, and I felt tingling, numbness, and something like a mild electric shock. It wasn't painful; it was just unexpected and slightly uncomfortable. As quickly as these feelings came upon my body, they were gone, and I felt completely normal. However, my body was not completely normal. I tried to move my legs and feet, but they remained motionless. I could feel the carpet below my feet and the back of my legs against the bed, but I could not move anything below my hips.
I was paralyzed, and I didn't know what to think. This has been something that I have dreamed of experiencing ever since meeting Collie, but actually being paralyzed was shocking and terrifying, despite knowing that there is nothing wrong with me. I wanted to ask Collie what it was like for her when she first realized that she was paralyzed, but I just couldn't do it. Then many of our clients came to mind; they had experienced what I'm experiencing right now, but there is a big difference—I will walk again unaided, while they, like Collie, never will.
Collie, seeing the emotion on my face, smiled and gently said, "Let me help you with your socks and KAFOs. You have enough trouble getting your KAFOs on without being paralyzed, and it will be even harder now. I still have trouble sometimes, and I'm always thankful for your kind assistance; you never make me feel helpless. Now it's my turn to assist you."
Collie rolled over to me and took my legs into her lap. She massaged my legs and feet before putting my socks on my feet. I laid back on the bed, and I hate to admit it, but I began to weep. There were so many emotions swirling in my head, and it really hit me how disabled Collie is. I hate to use that word since she lives such a full and complete life, and I have never once heard Collie say anything negative about the way her life has turned out; she's such a happy and positive girl.
Collie struggled to get my lifeless feet into my shoes, then she buckled the straps of my KAFOs around my lower legs, and then the ones on my thighs. I just laid there, my spine immobilized by my Milwaukee brace and my legs useless. I continued to weep; the emotions were so overwhelming. This is what every day is like for Collie, and I'm living her life right now.
Once I was fully braced, I sat up, and Collie wheeled closer. I gazed into Collie's loving eyes, taking in both her inner and outer beauty. She wiped away my tears and, with her hand on my cheek, said, "I hope those are tears of happiness, not pity. I love everything about my life; there is nothing to feel sad about. I especially love you, Billy, and I'm glad we're doing what we are doing. Our lives together are perfect." They were not tears of pity but ones of love, admiration, and joy. Forget about all the things that make Collie beautiful on the outside: her long, wavy red hair, her pretty green eyes, her perfect banded smile, her porcelain skin, and her petite figure. It's what is on the inside that I love most about her: her caring and loving demeanor, confidence, poise, intelligence, sense of humor, and positivity. I am one lucky man, and I love Collie with all my heart.
For a few minutes, we just sat there, facing each other in silence, holding hands. I was feeling closer to Collie than ever before, and I could tell she was feeling the same way. Collie then handed me my shirt, which I put on over my Milwaukee brace. She then picked up my kilt from the bed and rolled her wheelchair back a bit. Collie held my kilt, and I picked up each of my legs carefully, placing them in the garment. I did like Collie does when she puts on a skirt; I laid back on the bed, and wiggled into my kilt with her helping to get it up around my waist.
Since getting out of the shower, I have not uttered a word. I was in a daze, with all kinds of emotions swirling in my head. I was happy, sad, terrified, excited, and aroused all at the same time. However, the overwhelming emotion was a feeling of closeness, a new bond with Collie, and an even deeper love for her. From her quiet, calm, and loving voice, I could tell she was feeling the same way, and I knew she understood how I was feeling. I think we fell in love all over again—a new and deeper love than before.
Collie then strapped herself into her wheelchair, something she rarely does, and extended her arms. I took hold of her wrists, and she gripped mine, helping me to stand, and I made sure the locks at my knees dropped. I stood in silence for a minute, feeling the pressure on my legs from my KAFOs that were preventing my legs from collapsing beneath me. Collie then removed the strap that prevented me from pulling her out of her wheelchair as she helped me stand up.
Collie rolled back a short distance, then stood up herself. She can stand if she has something to lean against, and she can also walk short distances unaided. She stepped towards me with her arms outstretched, then wrapped them around my braced body. I returned the gesture, and we hugged for what seemed like forever. I was holding back tears but finally managed to utter these simple words: "I love you more than anything in the world, Collie." Collie began to weep and said, "I love you, too, Billy," and we kissed, our headgear be damned.
To be continued…