Sitting Here In Limb-OH
Wouldn’t it be nice to just step into a fabulous pair of custom made jeans, prewashed, preshrunk, pre-everything. All you’d have do it find them. Most days we find ourselves with an endless pile of jeans in the dressing room, wondering how they can ALL be the same size, cut and manufacturer – but none of them feel the same and worse yet, NONE of them fit you like that perfect glove you’re looking for. Now imagine your jeans are not just your ticket to a fabulous Friday night – they are your legs and they make you walk. Now those are SOME jeans. Magic Jeans.
Getting fit for a prosthetic leg is a process that is so difficult to articulate. The more mobility you seek, the more complicated it becomes. And, even better, the shorter your residual limb (or stump as we amputees fondly call it), the more difficult the task is.
I am an above the knee amputee – and missing both your ankle AND your knee really adds an element of complexity that you cannot know until they are gone. Additionally, the circumstances that bring you to your amputation are unique for each person, and will dictate your entire future as an amputee.
Some of us were lucky enough to have this done in an operating room, where the limb was preserved as best as possible. Others among us lost our limbs in brutal accidents – with IEDs or lawnmowers – and you can imagine the challenges that ensue with a stump like that. I was fortunate to be the former: in the OR, with lots of anesthesia and plenty of time to prepare. But no one can prepare you for life without your limb.
And nothing prepared me for the return of my cancer and what this has done to my residual limb. You see, edema (a.k.a. swelling or inflammation) is the calling card of cancer. And as luck would have it, for me, the latest tumor is in my hip and pelvic girdle on my amputated side. (Why not, right!?) So my little stump just acts like a reservoir at the end of the gravity train, filling up with fluid merrily and truly taking on its namesake as a solid, round, undefined stump. Unless, of course, you have a magic pair of jeans.
The only way to combat the edema? GET UP AND MOVE. All the time. And, most importantly, wear your leg AT ALL TIMES POSSIBLE. A prosthetic limb actually acts as a compression device; it is rock solid and the more you wear it, the more your body conforms to the prosthesis. If the fit is right and stars align, you begin to feel the line blur between where your stump ends and prosthetic leg begins. Your new leg literally becomes an extension of yourself. Nirvana. Magic Jeans.
Most of the time, you don’t realize at the store that the pair of jeans you’re buying are going to become THE jeans. You know, the ones that after you wash and wear them so many times literally feel like they were made for you. In the back of our minds, we’re always hopeful that the pair we’re buying might be THE jeans, but often we end up with some so-so pair that. Sure, they get the job done, but they never become THE jeans.
Currently, I am in the wash and wear phase of the breaking in process. I took delivery on my new socket last Friday – and yes, I walked. And then I walked some more. It was my wedding anniversary after all, and I wanted to celebrate. So I went to the gym, turned on my favorite tunes, hopped on the treadmill, closed my eyes and just felt the power of each step beneath me. The sweet feel of walking. I got so lost in my walk that when I finally opened my eyes to see how far I had made it, I had already gone more than a mile. So I figured, let’s go for two.
I closed my eyes, a few more songs played, and when I opened my eyes again – BOOM!– I’d already gone past mile two. Two-thirds of the way to a 5K, I figured what the hell, let’s celebrate this anniversary in style, make a video of me completing my 5K and send it to Jim so he could see my progress. More importantly, I wanted to give HIM the gift of his wife back, walking by his side through our journey of life.
Anyone who knows Jim knows that he does not care much for technology. He has a flip phone, no email and doesn’t know how to text. Needless to say, he has not seen the video that I created for him… yet.
At first, I was disappointed that I couldn’t find a way to get this to him across the virtual wires. Then, as usual, he said just the right thing. “Don’t worry,” Jim said. “I knew you would do it. I always knew you would do it. Sometimes you just have to have faith.” While his words comforted me in the moment, this Faith thing is hard to deal with sometimes.
For now, I am in the nebulous area of prosthetic fitting where you take delivery on the new leg, tinker with alignment and socket tweaks, and literally emulate every movement possible for as long as you can. Then you report back to the clinic the next day with feedback; the clinicians make more adjustments and modifications; and you return to the try outs.
For me, this includes a minimum of two miles on the treadmill every day, along with as many uneven surfaces and stairs and ramps up and down as possible, as well as much sitting, standing, talking, and walking as I can get in. It’s exhausting both mentally and physically. But if you want the Magic Jeans – I mean really want them – you keep going and going and going.
And then you go some more. And somehow, you have to also find the strength to believe, even after countless shopping trips, that THESE could finally be the magic jeans. You cannot doubt and, most importantly, you can NEVER. GIVE. UP.
I am well into my second week here in Florida and nearing the end of my time for adjustments and modifications. The anxiety of knowing that I will be leaving my team – the gatekeepers to my mobility – is heart wrenching. Knowing that I have a time limit induces such a sense of urgency, it’s difficult not to obsess over every small thing.
It’s times like these that I miss my parents the most. I would love to just ring them up and let them know how much I love them and need them. It makes my heart hurt so much they are not here. I speak to them and let them know I will not give up, I will carry on their spirits and I will complete that marathon. I will continue to share their light with the world through me.
Am I crazy? Am I just creating all of this in my mind to ease my anxiety? That thought itself makes me even more anxious.
My mom died eight years ago today. I have been wearing one of her dresses all week, thinking of her and drawing her positive energy and wishing I could be with her just one last time. Then a funny thing happened last night. I was speaking at one of the schools Nature’s Academy hosts for an overnight program. A parent came up afterwards, I figured to ask me a question about the trip.
She had a question alright. “Are you Carolyn Alfano’s daughter?” she asked me. I was FLOORED. What!? Why yes I am! As it turns out, this gal’s mom and my mom were besties in New Jersey way back when. She recognized my mother, she said, in how I spoke and carried myself. She had texted her mom only to discover that indeed – I am Carolyn Alfano’s daughter. WHOA.
My father died two years ago this past August. I have also been drawing on his strength and can-do spirit all week. Shortly before he passed, Jim and I saw so many red-shouldered hawks that we thought we were in Alfred Hitchcock’s “The Birds.” After Dad’s death, we even had a red-shouldered hawk sit with us in our yard frequently – it even stayed for the entire day the first Christmas after he died. My dad was a diehard Monmouth University fan; he graduated from there and held season tickets to all the hoops games. Funny thing: Guess what their mascot is? The Hawks.
This morning, as I was leaving for another long day at the clinic and gym, I couldn’t believe my eyes. Just above the garage and front door of the house I’m renting, there he was – the red-shouldered hawk. I got out of my car, walked over to it and he just gazed RIGHT AT ME. For at least five minutes. My fellow bird nerds will know this is very unusual behavior. Unless that hawk is your Dad. Double WHOA.
So as I drove to the clinic today, I started to think again about this thing called Faith. I began recounting how far I had already come in such a short period of time. I have already walked at least 10 miles in my new leg after months of immobility! I am still struggling with my alignment, and want to feel more anatomically aligned as I walk. I am not there yet, but I think I’m finally in the right department store. I have my jeans and I am wearing, wearing, wearing them until I collapse each night. And then I just keep praying that THIS LEG could be THE MAGIC JEANS. Scratch that – I’ve got FAITH that I’ve FOUND my magic jeans. Maybe I just needed to be reminded that I have all the magic GENES I need.