My hopes to escape dialysis were dashed this week when a second opinion confirmed that I need the treatment. I was disappointed but not surprised. Actually, what I had really wanted was to escape the challenges involved in a transplant since I have no intention of continuing dialysis forever.
I had seen so many miracles on my journey through rehabilitation following an amputation that I was ready for another in the case of my kidneys. The disappointment didn’t shake my faith but it did wise me up a little. Thinking about the situation I came to the realization that God had never lifted anything completely off my shoulders but he had given me what I needed in order to do what I needed to do. The amputation journey was full of amazing blessings but it was still an amputation and still a journey. Building on that experience I am certain that God has a wonderful plan for my kidney problem but I also recognize it is a real problem and God’s plan is, once again, going to be a process.
As I look back over where God has led me so far I see many gains and few losses. The biggest gains have been self-discovery and self-confidence. I know who I am now in a way I did not know myself before. I see my faults clearly but I have also found strengths I either didn’t have or didn’t know I had. I have a deeper faith in God but along with that a sense of personal competence that is new to me. I’ve gone through pure hell but because of that, I’m standing tall today not on two feet but on one foot born of nature and one foot born of faith in God and in myself. That second foot is by far the stronger physically. But it’s also a new foot not aged like the other and because of that it doesn’t bear the weight of what I used to be but invites me to dream of what I can be and do today and tomorrow.
Before the amputation, I prayed fervently that God would spare me from the road I faced. Today I embrace that road because I know that what I call the journey is nothing other than life as it is meant to be. Life is full of challenges because it is by facing and overcoming difficulties that we grow. There’s not a lot of going on when things are easy. My prayer now is simply that God would continue to stay close to me every step of the way and would give me what I need in order to make the most of the opportunities he has set before me.
A few days ago I graduated and it turned out to be a turning point for me. For several weeks I had been in physical therapy developing abilities I needed to get the most out of a prosthesis. I worked on my balance and under the supervision of trained professionals expanded my prosthetic skills. I came into therapy leaning on a walker and through therapy had moved on to a simple cane. Then, as part of my graduation, I needed to show I could walk through the whole building without relying on a cane. Knowing what I could do, I didn’t just walk those halls, I moved so fast my therapists had trouble keeping up with me. To sum it up I graduated with a score of “excellent” and a private judgment from my teachers that my accomplishment was nothing short of “astounding”.
It is amazing what a bit of validation can do. Up to that day, I was afraid of slopes. But now I was a proud graduate of prosthetic school so the next morning I walked down our steep driveway and brought the newspaper into the house. I used to think I couldn’t carry a plate or even a cup without losing my balance. Now as a certified expert walker I take heavy garbage bags out to the container and almost never go anyplace without something in my hand.
Part of this is the result of hard work. Therapy boosted my confidence because it increased my strength. I spent a lot of time on full body machines of the kind you can find in any gym or buy for home use. I’ve discovered that there is a direct link between the strength of body and confidence of mind. I can stretch my skills now because my body assures me that I can do just about anything I want to do.
But an equally important part of all this is that incredible power of affirmation. Appreciation, recognition, and applause have a deep impact on our lives. I was lucky to be in a situation where I could receive some of that. But I know many of us don’t hear much applause at home, work or anywhere else. However, there is one thing we can all do for ourselves. We can tune out voices that attack, demean and demoralize us, especially those we generate in our own heads. We can instead tune in on positive messages and start generating plenty of those on our own. I live by a simple rule; it goes like this:
“My name is not what you call me, my name is what I answer to.”
When a negative or demeaning name is hurled at me by others or even invades my own self-talk, I just let it slide away. Instead, I embrace and remember everything that is full of encouragement because as far as I’m concerned messages like that have been sent to the right address. Living by that simple rule I graduate as “excellent,” “astounding” or something even better every single day and, as a result, my confidence and with it, my capabilities grow constantly. I invite you to try my simple rule.
Progress for an amputee is measured in two ways. First in the growing realization that learning to live with a prosthesis is going to be a challenge combined with an eagerness to do what it takes to meet that challenge. If there is no realization of the severity of the challenge it will never be embraced. But if the challenge is not enthusiastically embraced it will never be met. My therapists have often reminded me that somewhere near a majority of people who take the trouble and cost to get a prosthesis never use it except for standing up off a wheelchair so they can immediately sit down somewhere else.
The second way progress is measured is by improvement in balance, strength, and gait. This, obviously, is the direct result of a decision to face and embrace the prosthetic challenge but it’s more than that. For me, progress has been most clearly measured in my graduation from wheelchair to walker to a four-pronged cane and now to a simple single pronged cane. The exciting thing about my new cane is that with it I can move with normal fluidity and speed on any surface. No one has to wait for me to catch up and some folks have to labor to keep up. The hydraulics in my heel combined with my cane give me a terrific boost. For example, on a downslope, my mechanical heel gives me s strong push forward onto the cane while my other leg catches up. Going upslope my hydraulics give me a definite edge since they receive my weight and then push me forward onto the cane which grabs whatever surface I’m walking on giving a boost to the other leg as it comes up. I’ve never been a fast walker but with a prosthesis and cane, my motion is probably more efficient than it’s ever been.
I still have a ways to go. My balance needs work and I’m always focused on getting stronger, but progress is being made. There were many long weeks when I didn’t think that would happen. Oh, I have dreamed of doing this, but part of me feared that it was only a dream. However, my core attitude was different and it’s still seeing me through. I recently expressed this to my therapist after an especially grueling session. She was wondering if I needed to stop.
“No way,” I said, “I came here to work!”
A dream filled my mind for more than a year. I could see it clearly: Following amputation of my left foot in the spring of 2017 I dreamed I would walk again. No, better than that I would go shopping, visit restaurants, explore trails, even play tourist at some of our world-class attractions here in the southwest.
The journey toward that horizon was long and tough. At first, I couldn’t even pilot my own wheelchair and transfers were sketchy at best. With rehabilitation, I learned to stand on my right leg. It took a year but at last, my left leg healed and I was fitted with a prosthesis. Now I could stand on my own two feet but that was about all I dared try. Then I learned that to get into physical therapy I had to be able to get around at least with help from a walker. So I got a walker and tried. Lo and behold I discovered I could walk.
I’ve been walking for almost a month now and I’ve graduated from walker to a cane. I can handle slopes and steps. I can assemble my own dinner standing at the kitchen counter. You might say much of my dream has come true and you would be right.
But make no mistake, life with a prosthesis has its challenges. Improvements in gait are incremental and vary day to day. Much depends on how the device is fitting today and that depends on me getting the sizers right. Sizers are socks that fit over the sleeve and under the socket. They come in several thicknesses denoted by color and fill the space between the sleeve and the carbon fiber exterior of the prosthesis. Sound technical? Getting the mix of sizers right is indeed technical. And that is just one of many day to day complications involved with this new life. So has my dream turned sour? Not at all! I can or will soon be able to do everything I dreamed of doing. I’ve simply discovered that I will always have to work at it.
It turns out that prosthesis life is just like life in general. You get out what you put in. You have to test and expand your skills daily. (I make sure the sun doesn’t set without me doing something I never did before.) You go to physical therapy because the stronger you are the more enabled and the less disabled you are. Today I approach the whole thing as a grand adventure. How far can I go, how much can I do? I’m not just referring to walking. What’s at stake in the adventure of post-amputation recovery is living, becoming the most productive person possible. But I suspect this is an adventure everyone is challenged to face in one way or another.
The past two weeks have been a time of deep change for me. I had taken my prosthesis home with joy but discovered I was afraid of it. Part of this was the natural struggle involved in learning to put it on right and move around with the help of a walker. Part of it was the feeling of a strange new weight on my left leg that made even sitting a new experience (when I crossed my leg it felt like I was lifting twenty pounds though the device weighs only five).
But none of that was the real problem. During the months of waiting, I had established a comfort zone that involved a lot of laying in bed with occasional forays in my wheelchair. But now the future I had prayed for had dawned. The excuses that I couldn’t do this or that were replaced by reality. If I didn’t do something it was because I chose not to try. The weight of that responsibility lay heavy on me.
For a while, I used the prosthesis only occasionally preferring helplessness to opportunity (breakfast in bed is nice!). I now realize it’s easy to adapt to the familiar no matter how miserable it might be to the point where we resist even a glowing future. But pushed by family, friends and the staff at dialysis I am slowly emerging from my cocoon. Today I’m walking a lot more but more important I put my prosthesis on first thing every morning. I feel part of me is missing until I do. It’s an amazing device with titanium strength and a hydraulic ankle and heel which rolls along better than the legacy flesh and blood versions. I’m proud of it. In fact it’s no longer a device to me, it’s now simply my left leg and that future I feared is step by wobbly step opening before me.
During my months of rehabilitation I thought often about the day I would receive my prosthesis. In my mind that day was glorious. I would slip on the device and walk – no make that dance – out of the clinic.
That day has come and it was indeed glorious but I can tell you – there weren’t no dancing. Even though steadied (but not supported) by parallel bars I was as wobbly as a girl testing her first pair of high heels. My left knee, in particular, seemed to have a mind all its own. Things got better as the training session continued and my therapist said I did “excellent”. I privately labeled my performance with a word but it definitely wasn’t that one.
I now understood that there was a next step that I needed to take – physical therapy. To my surprise, I wasn’t disappointed. I had always had sense enough to wonder how I would negotiate steps, slopes and stuff like that. Now I had an answer – someone would teach me.
Today I’m excited. I embrace the training. It turns out I had forgotten that everything worth having is won through hard work but, the work becomes a pleasure in light of the joy that lies ahead. Life is a rhythm. Life is a rhythm, its driving beat demands effort, but continually increases in pace and excitement. If we follow it, we will be lead towards a place that makes it all worthwhile.
This morning is the anniversary of the day I was admitted to the hospital for treatment of an infection that eventually resulted in the amputation of my left foot and the beginning of a long year of rehabilitation. I wouldn’t have remembered the anniversary except it was called to my mind by a very unusual and startlingly vivid dream last night. I rarely dream in color but this was spectacular! As I watched, someone in a fiery red robe pushed a door open in front of me revealing a bright landscape shaped by rolling spring green hills, shelves of deep blue mountains retreating into a distant horizon all gathered below a sky of perfect turquoise with white clouds roaming its wide expanse. As I looked at this stunning scene I also felt but did not see a shell of darkness extending behind me stirring memories of the shadowy parts of the extraordinary year gone by.
I didn’t know what the dream meant and as I write this I still don’t. It could mean that a long journey through many difficulties is ending for me and is about to be replaced by something better except I don’t need anything better. I wouldn’t trade this past year for anything (an almost universal feeling among amputees). The person I am and the health,strength and joy that fill me today constitute a miraculous gain not loss. So what did my vivid dream really mean? Right now I don’t think it necessarily had a meaning; all I know is that I woke to what for me is a fresh new year filled with a peace that has erased all my nagging anxieties and substituted a powerful feeling of optimism about all of life including its challenges. I know I have the strength to deal with tough times because I have done that. But most important I have beheld the presence of a God whose love transformed the darkness surrounding my year long passage into the same beautiful light I saw in my dream, the light in which I live every day.
I find myself in the most frustrating part of my journey these days. On one hand, I have been blest with a surge of strength and energy as my body seems to be getting ready to resume a style of living that includes walking. On the other hand, I’m stuck awaiting the arrival of my socket, the most important part of a prosthesis.
I have experienced many delays throughout my journey but this one is tough. I know I can walk because I’ve done it using a training socket but I’m still wheelchair bound. I feel like a caged lion especially because it’s not a matter of something I can’t do physically. I’m eager to do things like shopping and going to church but at the same time, I really don’t feel like doing things in the wheelchair because that’s just not who I am anymore.
So how do I try to handle this part of the journey? The answer is with gratefulness. God has been working with me for a long time teaching me what faith really is. As I’ve described in these posts, I’ve experienced convincing miracles but I know now that they really don’t convey God’s deepest message for me. That message is trust which means turning over the management of my life to God. Miracles showed me that God is real and is with me but waiting has taught me how to trust God.
I will certainly walk (that is God’s promise) but it will happen when God says. I know the delay has benefited my growth in faith but it also may well have afforded time for my leg to heal in some way that will prevent a crisis down the road. I also know that the wait has refined my thinking about what I will do when I can walk. Once I looked forward to doing things like going to Golden Corral and eating all sorts of foods my wife wisely forbids. But now I’m focused on lifting the burden of transporting me to dialysis from my family and on doing volunteer work for some organization that matters to me. My discovery has been that waiting is hard but sometimes waiting may be the best possible thing for a person.
My journey through amputation toward recovery has included extraordinary moments, some of which deserve the name miracle. I’ve written about a few of those events in this blog but I have also experienced one unique experience that has been an everyday part of my life since this entire thing began about a year ago.
The realities of amputation and the challenges of rehabilitation have driven me to frequent prayer, but these prayers have consistently been thwarted. Whenever I would try to pray about something weighing heavy on me like the prospect for surviving the surgery or the longing to walk again I would hear a voice say to me in clear words “I’ve got this.” Whenever I then tried to continue my prayer I felt my words being thrown back at me as if the effort reflected a disappointing lack of trust. This total experience was in no way vague or mystical; it was visceral and direct.
Living daily with this phenomenon has changed me. I have learned what it means to trust God. A year ago I would have said that trusting God meant believing that there is a God and that God loves me. I now understand that it means much more than that. Today I know that trust is a matter of holding on to the idea that in every aspect of my life no matter how small, mundane or even difficult, God is working on behalf of what is best for me. My greatest challenge, one that I’ve learned is much tougher than getting back on my feet, has been the task of abandoning worry and embracing all of life with joy knowing that God is at work in every situation. As a result my frightened pleas to God have been replaced by praise and my once constant worries have been driven away by unwavering confidence.
So, what’s the coincidence that my title refers to? Yesterday I was on the phone with my mom when she told me a story about the days before my surgery. She was continually imploring God for my survival and that I might walk again when she suddenly heard a voice say “Don’t pray about this anymore. Your prayer has already been answered.” She told me that it felt a bit like a rebuke but she understood that it meant it was time for her to let go and let God take care of this matter. Today she wonders if we both heard the same clear firm voice. Who can say for sure, but I suspect we did.
One perk offered at dialysis is a private TV. During those tedious hours, it’s impossible not to watch some and often a whole lot (though reading makes the time pass faster). What has amazed me is the incredible number of ads promoting some kind of pill or medical device, either that or offering legal help in suing the company that sold you said pill or device.
Watching this stuff my imagination takes off. I discover symptoms of maladies I can’t pronounce and in many cases don’t even know what they are and I even spot a few situations where I might be able to sue somebody. Being on dialysis makes it worse because I get a complete blood workup every single day as a natural part of the process along with a mini-checkup on arrival and departure. Needless to say, there’s always some measurement that’s just a little off which sends me to my computer in an effort to pin down the dread disease that might be threatening me.
I am in awe of the medical professionals who saved my life and now are giving me a new and better one, but enough is enough! There’s a difference between health and obsession about health. We all should care about our health but we shouldn’t become its servants. I am dismayed by the number of people who regularly dash off to emergency rooms with a stuffy nose or who demand a potentially addictive pill because of the slightest irritation. To me, this attitude is itself a kind of addiction and an exercise in self-absorption.
The cure for all this is putting our focus on activities that give our lives meaning and joy while understanding health as something that helps us pursue those activities. We do well to take care of our health but only because we want something much bigger, happiness and a productive life – greater things that truly deserve our time and attention.