My mobility has been challenged of late, even more so since December, when I had my most recent surgery. At the best of times, I can walk around on my prosthetic leg with crutches for a few hours. I go slow and not for very long, but I can go. I can also use my wheelchair. But, if I want to go very far, or very fast, someone must push me. I can use my walker, but that is what old people use, and it is more like shuffling than actual walking. So, what’s a guy to do? Recently, I attended a convention for people with disabilities (I still have a hard time calling myself “disabled”). In the convention hall was an exhibitor who was selling electric motorized scooters. But these aren’t your normal scooters. No! These things fold down to a package the size of a medium suitcase. They go about six miles per hour for about 12 to 15 miles before recharging. They are awesome! And I want one. The only problem is they cost over $5,000. That’s about $15,000 more than I have.
So, I was introduced to a group called Help Hope Live. They are a non-profit fund-raising organization that helps people like me raise money for their medical and other disability-related expenses. They have kindly setup an account for me and have started a fund-raising campaign. They want to help me raise the needed funds to buy the scooter. Those who donate receive a tax write-off and the good feeling of knowing they’ve helped me out.
I haven’t written anything since September 2021, now it is February 2022… that was five months ago! That’s a long time to keep everyone in the dark. But… “dark.” That’s kinda where I’ve been, in a dark place.
Five months ago, I was doing well: managing my situation, looking forward to a lot of things, spending my cancer anniversary remembering the challenges and blessings, anticipating a future of possibility, beginning to embrace my new reality. For the past five months, things have been a little different; I haven’t been doing quite as well.
Shortly after my last post, one thing after another started to go wrong. The reality of the fact that there are now several things that I can no longer do, coupled with the fact that there is a very good chance that my going back to work probably won’t happen, and the stress of all that puts on me and my family on edge. Pretty soon, pretty much all my relationships began to suffer, including the one I have with myself. It didn’t take long before I began to get frustrated… with just about everything.
There was one bright spot: I had signed up for disability ski lessons at a “mountain” not far from here (actually, there is no such thing as a mountain withing 1,800 miles of here, but I’ll take whatever snow-covered large hills I can get, if I can go skiing). I contacted them, filled out their forms, answered a few questions, and informed them that I have been skiing for most of the last 40+ years, and wasn’t so bad. They let me know that I could take lessons with them, for the price of buying my lift ticket. They would give me two instructors and all the equipment I would need (I told them I have three pairs of skis, some boots, and poles, but they were worried that my skis might be too advanced for re-learning how to ski, and I would need special “outrigger” poles – poles with little skis on the bottom). Not a bad deal! It was a bright spot for me to look forward to.
A Bump in the Road
Then December hit. The skin where I was stitched back together began to get irritated from my prosthetic leg. It started out looking like a “hot spot,” the kind of sore on the skin that will give you a blister if you don’t cover it soon with moleskin (an old Boy Scout trick). But even covering it didn’t work. Quickly it transitioned from a hot spot, to a sore, to blister, to a boil. Clearly there was infection from somewhere inside me that was trying to get out.
“Get off that leg!” That’s what my surgeon told me sometime around Dec. 15. She said it wasn’t looking very good. By the next day, she said it would need to get operated on, washed out to clear out the infection and fix everything. So, Dec. 21, another surgery. My regular doctor couldn’t do it, as she was already out of town for Christmas (she deserved it!), so one of her partners did it. Fortunately for me, I was able to get out of the hospital in time for Christmas and he is a pretty good surgeon too.
Rather than stitching me back together, this time the doctor put a “wound pump” over the open surgical site. Surgery had left me with a golf ball sized hole on my left flank. It was pretty deep, as the surgeon went all the way to my sacrum to get a bone sample; he was worried that the bones had gotten infected (fortunately for me, no infection in the bone, but unfortunately the infection in my tissues was MERSA/Staph… the infection will likely be with me for a very long time).
The wound vac is an amazing gizmo. It starts with a sponge that is stuffed inside the surgical site. Over top of that they put a “lily pad,” a plastic flange with a hole in the middle that attaches to surgical tubing. The tubing then goes all the way to a vacuum pump. The pump puts constant negative pressure on the wound, trying to suck the tissues closed from the inside out. And it seems to be working. The only problem is, it takes a lot of time. After six weeks of being on the pump (now 7.5 weeks off the leg and out of therapy), the wound had closed up enough that all it needed was gauze pads taped over the top of it like a big Band Aid. Another week after that and all I’m using is a special gauze bandage to catch whatever stuff still emerges from the wound.
I went back to my regular surgeon today (Feb. 14, Valentine’s Day) to see what she has to say. It is about an hour down to her office from my house, waiting in her office or exam room for 20-30 minutes, then a 15-minute appointment, then the hour drive back home. It takes a good chunk out my day to do it, but…
She looked at my healing wound and said that it is looking “really good!” Although it is still “weeping” a bit, if I keep it covered with some gauze so air can get to it, it should finish healing soon. I am to get back on my leg a couple of hours a day! I don’t know how long it will be before I can get back to physical therapy. Hopefully, she will clear me to get back to it soon!
But I confess: I’ve cheated a little. I’ve used the leg several times during the past four or five days. Since last Thursday after the prosthetist cut more carbon fiber from my leg-socket, I’ve felt a little cavalier. I’ve been walking, sitting, standing on my leg. It feels good to get back on the thing, but man, am I out of shape! My cardio-vascular conditioning sucks right now and all my muscles in my body hurt when I use it. I have a feeling it is going to take a while to get back into the groove.
Oh No! Another Dark Place.
However, coming full circle, I have been in a dark place. It isn’t very fun. The thoughts that cross your mind when you are deep in the rabbit hole should never cross your mind, they certainly don’t help you move forward. I admit that I had started spiraling, somewhat out of control.
I participate in a cancer recovery support chat group. We sign up and write messages on a discussion board and respond to others’ messages. At first, I thought it was a little odd, but I’m surprised at the cathartic power of writing things down for others to read. As I try to be vulnerable, open, and honest about my situation, the more I feel some weight coming off my shoulders. Then, when I receive their feedback and thought, I get lots of (sometimes confirming) ideas of things I should do, not the least of which is to continue writing things down, including this blog. I need to write, and write, and write some more. Some of it should be consumed by others, some of it should be for my eyes only… and then consumed by fire!
I received another great idea from this group. The moderator, who happens to be a Clinical Social Worker pointed out, “Our perception is either our prison or our passport.” I admit, I’ve been in prison. It’s high time to make a break for it! Trust me, it is harder than it looks. All the losses, all the ongoing pains, all the trials that just won’t end. When contemplating these, it is easy to see how one could get stuck in prison. So, how do you escape?
I made a realization when I was originally in the hospital for my cancer surgery: If you want to avoid the rabbit hole, you’ve got to find ways to get out of your own mind and into the world of others. That is, stop thinking about yourself and start thinking about others, empathizing with them, walk a mile in their shoes, and find ways to help them carry their burdens. If you want to be free, just free yourself by serving others. At that time, I made the conscious decision to serve everyone who came into my hospital room so that, by the time they left, they would feel better about their day than when they came in. I promised myself to do this for everyone: the doctors, the nurses, the techs, the cleaning staff, the meal delivery people, my visitors (especially Andrea); quite simply, everybody. Unfortunately, while the choice to serve others was conscious, when I went sceptic, I went unconscious for the next two or more weeks. When I awoke, I found out that I had experienced a colectomy and had an ostomy bag attached to stomach, right next to my belly button. Mind you, in all honesty, a colectomy was the one surgery I NEVER wanted. I would rather have died than have that surgery. So, when I awoke and saw what had happened, immediately (and unconsciously) my spirits dropped to the floor. I couldn’t believe it. The one thing I never wanted to happen, actually happened, and I was alive to deal with it. To me, death was a better alternative.
So Long Service. Hello Wallowing
I didn’t do so much to serve others now. I was really stuck in my head. This is what I took home with me from the hospital, and it has stayed with me. Not that I don’t serve; I do what I can, but then I almost immediately go back into my head. I sometimes hope that there are people and opportunities for me to serve. But when you are stuck in a wheelchair or on crutches or on a walker, and can’t do too many things, or stuck in my house, it is hard to find them. In fact, it is even easy to overlook any opportunities, even those that are closest to home (or even in the home). I can’t even go back to work (yet). I haven’t been cleared by my doctors and I don’t have a job to return to. And who am I kidding? Who wants to hire a disabled, one-legged man who hasn’t worked in over a year? I can’t even serve by going to work!
Work, the one thing that I have used to define me for a very long time now. It has consumed more of my life than I ever thought it would. I have become my father! Never was there a harder working man who worked more hours than anyone. However, he was a service-oriented man. Whenever someone needed to be rescued, they always called my dad. It didn’t matter the time of day or night. He’d get up and go. Just like that. I guess, in that way, I haven’t become like my father… not yet. Where I am right now is not a good place to be. I need to find ways and opportunities to serve. The more I think about it, the clearer it starts to become. Like fog being slowly eaten away by the rays of the sun, every once in a while, I can see something through the mists that needs my help.
It’s Getting Lighter Out
Since Andrea has returned to school, she needs a lot of help. Whether it be academically oriented or covering for some of the things she does as a mother and homemaker, she needs a lot of service. So, I try to be ever present, ready to serve her at any turn. And it seems to be helping. At least she is acting more confident at school than when she started out and she doesn’t worry so much about things at home anymore. I am feeling even closer to her now than perhaps ever before. It is really drawing me out of myself.
Then there’s the girls. Each of them has her own unique set of challenges with which they need help. The deeper I climb into their worlds and try to sit with them in their trials (as well as in their rejoicings!), the closer I get to them and the stronger our individual relationships grow. This is extremely helpful in drawing me out even further. The more I care for them, the less I worry about me, even if I am limited as to what I can do for them.
Further, just this past Sunday, our Bishop asked Andrea and I to teach a Temple Preparation course, as there are several people in our Ward who are preparing to go to the temple. This is really going to call me out. I will need to think deeply about each of them and what they need so I can give them the best instruction I can. I’m looking forward to it.
So, I guess we come back around to service. The best antidote to solipsism is service. In the immortal words of Gordon B. Hinckley, 15th President of the Church of Jesus Christ of Latter-day Saints:
Generally speaking, the most miserable people I know are those who are obsessed with themselves; the happiest people I know are those who lose themselves in the service of others…By and large, I have come to see that if we complain about life, it is because we are thinking only of ourselves.
Gordon B. Hinckley
The best antidote I know for worry is work. The best cure for weariness is the challenge of helping someone who is even more tired. One of the great ironies of life is this: He or she who serves almost always benefits more than he or she who is served.
I’ve had writer’s block for a couple of months. Each time I tried to write something new, interesting, insightful, or witty, the words just wouldn’t come. But I tried to write, over and over again. The more I tried, the more frustrated I became. The more I felt frustration, the more I felt anxiety. The more I felt anxiety (because of my emotional penchant and my Danish extraction), the more it became angst; almost daily I would have feelings of deep dread as I searched to find words to describe my total embodied experience. If you know me well, none of this should be overly shocking, as I do tend to be broody by nature.
Notwithstanding my normal ways of being, the past couple of weeks have been particularly angst-ridden, and I have wondered why. Then it dawned on me, just about a week ago: September is my anniversary month:
September 2, 2020: Breaking News: After my spine doctor told me that I was a “difficult patient,” he prescribed an MRI to find out why the injections were not helping my sciatica; the MRI revealed a “large and aggressive mass” growing on the inside of my left pelvis.
September 3, 2020: Oncology Consultation: I met with my orthopedic oncologist who told me that the “mass” was, indeed, cancer, and that it was growing very rapidly.
September 4, 2020: Diagnostic Scan: CT scan confirmed that the mass was likely malignant and impacting the bones of my hip and pelvis, as well as the soft tissues of my urinary tract (including all the “important” parts and bits… if you catch my drift); the mass was aggressive and could rupture at any time.
September 11, 2020: Surgical Biopsy: Samples confirmed the cancer diagnosis: Chondrosarcoma!
September 17, 2020: Surgical Consultation: We were informed that the only solution to fix this cancer was surgical, neither radiotherapy or chemotherapy would have any impact; I was going to have to lose my left leg, hip and pelvis, also called a “hemipelvectomy. They said, this was the second most radical surgery there is, second to a full-pelvectomy (removal of both left and right halves of the pelvis, hips and legs). There are no procedures for reconstructing any of these bony structures, so the entire left side was going to be lost; we had to act fast as the tumor looks suspiciously malignant and could go from its current stage 3 to stage 4 at any moment (which would have been bad). I’ve never been so scared in my life!
September 21, 2020: Priesthood blessings and other sources of comfort: The night before the surgery, my Bishop (that night having been called as my new Stake President), his counsellors, and a couple of other Priesthood holders gave me blessings of healing and of comfort and counseling. This gave me some peace, though I was still full of trepidation. My family was present, so I hope they were comforted as well.
September 22, 2020: Surgery: I went into surgery, full of fear and trepidation, putting my total faith and confidence in God and His inspirations to the doctors. Though I was somewhat comforted, I was still pretty scared. The surgery was scheduled to last from 15-16 hours and would be particularly bloody as there a number of major blood vessels in this region of the body. It was supposed to be quite intricate as they were dealing negative margins of approximately 1mm to remove the cancer and still preserve some of the important nerves and other tissues. Well, according to Andrea and the surgeon, the procedure lasted only 12 hours, there was 0 blood loss, and the negative margins were met (meaning my bladder and related functions and most other nerves could be preserved), though they unfortunately nicked one of the nerves, creating some numbness in some of the regions of the newly constructed stump. All-in-all, the surgery was considered an overwhelming success. The doctors were incredibly happy!
Now we are one year removed from these events. Things have gone pretty well, including the addition of my new prosthetic leg.
It has not been an easy recovery; it has been quite painful both physically and emotionally.
The hardest physical challenges have included the pains related to healing from the surgery, the pains of using my new leg, the psychological challenge of putting my trust in a leg that I cannot feel (hoping that it will bear my weight and that I don’t stumble and hurt myself), and the psychological pains of realizing that there are a number of things that I will never be able to do again (drive my motorcycle, drive my favorite car with a manual transmission, take long walks or go hiking, alpine skiing, water skiing, riding my bicycle, home maintenance, and others). Perhaps the hardest thing to overcome has been getting used to seeing myself in the mirror and coming to grips with my new, disfigured appearance. The realization that I am disfigured for the remainder of my days makes me feel undesirable to my wife, hard for others to see me, and coming to grips with the fact that my height can vary (when I stand on my new leg I am 5’6” tall; when I put my weight on my natural leg I am 5’11” tall), meaning that I cannot reach for or carry things. I cannot sit cross-legged or, in fact, take many seated positions at all. I must use my custom-made wheelchair from time-to-time, making it even harder to do many things I might otherwise typically do.
So, as you can see, I have been wallowing for the last many weeks, contributing to my writer’s block. It feels as though I have gone down some “rabbit holes,” something I vowed I would NEVER do. While in the hospital, I made this commitment to myself. Inspiration came to me then: to withstand this temptation, I need to find ways to serve others; by serving others I would purposefully and mindfully take my emotional energies and put them away from myself and on to others. This was a powerful tool in the hospital. I found I that, even if the service was miniscule (e.g., giving away chocolates to the cleaning staff, helping the doctors, nurses and others feel better about their day, make them laugh, etc., or any other act of service I could think of), I would IMMEDIATELY focus outside of myself with my intention to others.
Now that I have been out of the hospital for many months, I am finding it harder and harder to find others to serve. Sure, I can and do serve my family: I try to do anything I can to make their days/burdens seem and feel lighter. However, I am not very good at identifying others whom I can serve.
I have renewed my commitment. As I have done so, it has eased the angst I have felt in my soul. When I meet with others (e.g., grocery shopping, running errands, meeting with friends, etc.) I try to focus on them, not on me; I only allow myself the opportunity to discuss myself insofar as they want to hear bits of my story (not everybody is worthy of hearing all my story, though most people, even strangers, are worthy of at least pieces of it).
My renewed commitment has led me to a new-found sense of well-being. For example, about two Saturdays ago I was invited by my prosthetist to participate in a golf clinic his practice sponsored for their patients. I was quite nervous. Back in the day, I played golf. I played a lot of golf, especially in college. Indeed, I spent a lot of time any money enjoying nice walks in the woods, being frustrated at my (in)ability to hit a tiny white ball with a stick. I know what it takes to play well: proper stance and weight shifting, swinging the arms in a controlled and consistent manner, good head position, etc. Now that I don’t have the ability to stand for very long, pivot my body and shift my weight, I had absolutely no idea how this was going to turn out. Frankly, I went into the experience with no small trepidation.
After a three-minute lesson by a fellow amputee (most of which was of little value, other than his advice that, at best, all I should anticipate being able to do is a half-swing with its loss of power and distance over my normal swing). there I stood at the driving range, Eight Iron in hand, and all my weight on my back foot (a recipe for disaster). But, to my surprise, my very first (half) swing was way better than I had anticipated: I struck the ball clean, it went straight, and further than I expected.
There I stood at the driving range, Eight Iron in hand, and all my weight on my back foot (a recipe for disaster). But, to my surprise, my very first (half) swing was way better than I had anticipated: I struck the ball clean, it went straight, and further than I expected.
This surprising outcome was very encouraging. The bug came back. Once again, I was an addict. I spent the next hour and a half hitting balls. About one-out-of-seven of my swings was a good one. Way better than I could have hoped for! I was on top of the world again. Something I thought I’d never do again could come back into my life! Suddenly, I was filled with great hope and anticipation that, if I could bring this back, perhaps there were other things I could do.
Sometime in the next couple of weeks, I am going to see if there are ski instruction opportunities for one-legged skiers to get back on the slopes. I am going to attend the next regional “Mobility Expo” to learn from others in the amputee community exactly what is possible.
I am going to see if there are ways I can, once again, develop sufficient upper body strength to try my hand at indoor climbing. Perhaps something like this:
Who knows, I may even try a new form of hiking.
A rather lengthy video, but very inspiring.
I will continue with my physical therapy. I will learn how to walk without crutches or other supporting devices.
I am going to learn how to become independent. Or, at least, as independent as is reasonable.
I will continue my search to find people whom I can serve and various ways to serve them.
Let these be the lessons for me and for others who physically or emotionally struggle. Keep your head up and look around, there are others who need your service. Get your mind out of your own business and onto the needs of others. Find ways to serve them. Give something new a try, even if you don’t think you can do it. You might be surprised at what you can do. Identify communities of support. Take a risk and become part of them. Don’t hang out in the shadows but put yourself in the middle of it all. Take a risk and talk with them. Keep your family at the center of your universe. Keep them involved. Love and serve them. I hope you find your way out of your own funk
We live in a zone where many of the COVID-19 restrictions have been lifted due to the performance of the local population in getting vaccinated and the ever-lowering case count. For the fully Although some have not (i.e., Costco – my favorite store!), many of the local business have even lifted their face covering requirements. What this means is that one can now do things that haven’t been done in a long time: eating out, visiting museums, going to the movies, and more.
A couple of weeks ago, Andrea and I were invited out to dinner with a couple of good friends. It was a welcome relief from the tedium of being stuck behind closed doors and always eating foods that we prepare ourselves… not that there is anything wrong with the food we make, it’s just that eating out is as social as it is about filling one’s belly. It was lovely. We had a great time and the food was superb (I guess something is always superb the first time you try it, even if it isn’t the first time you’ve really tried it, but that it’s been such a long time since you’ve tried it… which raises a very important philosophical question: what are the ontological and epistemological impacts to the psyche for having once done something, then forgetting that something, then remembering that something such that one is capable of doing it for the first time again?… but that’s another issue, I suppose).
Andrea must drive the car as it has a manual transmission. I used to love driving the car, jamming the gears while I tore through some bendy, up-and-down roads. But when you are missing your clutch leg, it becomes, well, rather impossible. As she drove towards home, I began to complain about a “stitch” in my left side ribs. It felt like the kind of stitch you get when you start running when you haven’t done it for a long time (there’s that pesky philosophical question again!). The further down the road we went, the sorer the pains became. Pretty soon, the pains became rather unbearable. It was as if someone with big, heavy boots on had just kicked me in the ribs. Man did that ever hurt. Then things took a really bad turn, the pains began to radiate up to my left shoulder and then started to go down my left arm. Perhaps you can guess what these symptoms typically mean.
Andrea immediately thought I was having a heart attack. Urgently, she had me call Audrey (our pre-med daughter) to ask about the signs of a heart attack. The prognosis was not good (prognosis: “pre-knowing,” “knowing things out in the great beyond,” another very philosophical question: how can one truly “know” something in advance, or out beyond the horizon of current knowledge (yet another epistemological problem that ultimately ends in an argument of the possibility of a morality – see one of my earlier works: Stephen C. Yanchar & Kristoffer B. Kristensen, Journal of Theoretical and Philosophical Psychology 16 (2):93-102 (1996)). Audrey quickly rattled off the typical signs. Andrea drove faster. As we talked, Andrea commanded Audrey to come out of the house and get ready to go with us to the hospital. She complied and got in the car. I’ve never seen Andrea drive as purposefully and rapidly as I did, but I think she got to the hospital from our house in record time.
Audrey volunteers at the hospital and does rotations into the Emergency Department. Before the car can to a halt, Audrey raced inside and began telling the registrar that her dad was having left side chest pains and all the other symptoms. Because they all like her, they jumped right to it! Audrey too; she began informing all the nurses what was going on in the most medical of terms, which they greatly appreciated.
So, I was placed in a wheelchair and brought inside where I was quickly taken to a triage room. The pace at which everyone moved was mind bending! Blood draws, X-Rays, CT scans, EKG, and on and on. After about 15 minutes the verdict was in: NO HEART ATTACK! Instead, the scans said something a little less bleak, but almost as troubling: Pulmonary Embolisms that infarcted several small areas of my lungs. Translation: I had several small blood clots that got stuck in my lungs and killed little bits of my lung tissue. Treatment: large doses of heparin and close monitoring for the next 24 hours as an inpatient, then released to home if all goes well, with the commitment to continue blood thinners.
My heart sank, not another stay in the hospital! I just want to go home. I just want a normal life again. But a normal life doesn’t seem to be mine. For good or for ill, since I can remember there has been nothing “normal” about my life, things have always been just a little strange for me. Not enough time to get into all that here.
Now that I’ve been back home for a little while, I can say so far, so good. Each day my lungs get stronger and stronger, and I have returned to my standard activities. I continue to go to physical therapy, where I continue to advance in my walking capabilities. My therapist has me outside, walking in the grass, often wet and thick, often up and down hill, going over curbs using the style called, “riding the knee.” This refers to when I place my left (artificial) foot halfway over the edge of the step and then ride the step down, just like you might do with a regular walk down the stairs. Admittedly, this is a bit unnerving, as I must trust that the knee will do its job and flex properly when it is supposed to and stay rigid when it’s not supposed to bend. But therein lies the truth of the matter: although learning how to walk is incredibly physically demanding, the level of trust I must put into the technology is unbelievable. It is very daunting knowing that even though I cannot “feel” my left leg, hip or foot, I must trust that the artificial ones will do their job. There is little biofeedback to give me direction about how much pressure to apply here, or how I must adjust my gait there, etc. I must learn how to get this sensory information through vibrations coming up through all the (expensive) mechanisms, through the prosthetic socket, and into my reconstructed hip.
I continue to participate in physical therapy. It is one of the highlights of my week. In fact, I find myself eagerly anticipating it for each of the three days per week I get to do it. I don’t know, perhaps it is just the opportunity to get out of the house, or maybe to expand meaningful relationships to others outside of only my immediate family, or it just might be that there is a certain excitement at just getting to see and feel myself improve with the use of the artificial leg to the point of hoping to have largely unassisted mobility at some point in the near future. Regardless, I go and see and feel myself progressing, and the therapists continue to be astonished at how rapidly I am exceeding their expectations of the timetable for achieving benchmark outcomes (it is always nice to have some external validation).
This week, I was able to work on a few things:
First, I was invited to try walking on my prosthetic leg but braced only by a single crutch in my right hand. If taking my first steps on the leg, without the continuous support of parallel bars and only crutches was scary, this was downright frightening. I had to quickly figure out how to shift my weight from right leg to left leg and back again but without the use of a supporting crutch on my left arm. You must take a deep breath and trust in this artificial leg, that you really cannot feel, and hope to heck that it doesn’t give out!
One Crutch Walking
A bit scary… but liberating!
As you can see in the video, I was largely successful, but hardly graceful. Indeed, just as the video ends, you’ll notice how I take a bit of a stumble. I didn’t fall, but I did have to go through some rather amusing gyrations to prevent ending up on the ground. I admit, if it wasn’t for my cat-like reflexes (and I don’t really care for cats), I would have been quite a sight!
This single-arm approach to crutch walking is giving me a lot of hope that one day I may actually have no-arm crutch walking.
Second, my prosthetist made a couple of adjustments to the length of the leg and some of the angles in the hip and knee. Essentially, the result is almost, but not quite, learning how to use the leg all over again. While the principles still pertain, the motions are altered, and I must re-learn how to focus on what I need to do to have a proper gait.
However, it seems that I was doing it sufficiently well that my therapist took me outside the building and had me walk on the lawn (not much of a lawn, mind you, more like a bunch of clover intermingled with weeds and blades of what appears to be grass). The point of this exercise is that one won’t always be walking on smooth concrete surfaces, but that the ground may be variegated and with vegetation growing on it, one must learn how to clear the toe through on the left leg swing through, otherwise the toe gets caught in the grass and down you go!
Walking in the Grass
This is very challenging, too. You have to work very hard to “clear” your toe so it doesn’t get caught in the grass and you take a tumble. Not good.
On this video, you’ll notice that I’m still learning (obviously), as I am doing a movement called, “vaulting.” That is, to initiate the left leg swing through and ensure sufficient toe clearance from the grass, I sort of “vault” up, lifting my right heel while swinging my left leg. Typically, this is considered bad form. Proper form would be to have the right heel planted firmly on the ground through the entire length of the stride until my left heel strikes the ground and my weight shifts over to that side. But beginners must begin, somewhere. So, we start with a little bit of vaulting and then the whippings take place until I figure out how to stop it.
There is, however, one benefit to all this vaulting: if you look closely, you’ll see that my calf muscle is beginning to develop! It hasn’t been this strong in a long time, and it may only get stronger J
Third, stair training. I’ve done this a couple of times before, but it is one of my favorite exercises. The goal is to try and descend a set of stairs as naturally as possible, riding the left leg (knee) down alternating steps, making more of a “gliding” motion rather than a halting one. Again, the weight must shift from right to left and one must put an enormous amount of faith into the leg one cannot feel.
Not for the faint of heart.
But an interesting thing is beginning to happen although there are no nerve endings in the titanium and stainless-steel leg, those parts send vibrations which are sensed in the “stump” of my left leg, which vibrations allow me to actually get a sense of where things are and what is going on.
Warning, tangent alert: I put quotes around the word “stump” for a reason. There really isn’t much of a stump there. In fact, there are no bones on my lower left quadrant. From the pubic bone/pelvis, through the hip and leg, all the bones are gone. There is no hard tissue support, only soft tissue from where my quadricep muscle and skin were folded back on themselves to form a flap, straight across the pelvic floor, that has become my new left buttock. All the support I get comes from plastic and carbon fiber shells that are fitted to this soft, spongy tissue that is now my new left side. And let me tell you, it hurts. All the time. What’s worse, my lumbar muscles and spine hurt. All the time. And this hurt is worse than all the other hurts combined!
Under normal conditions, a left leg is a counterweight to the right, allowing the spine to remain straight up and down. Now that I have no left leg, there is no counterweight, and my center of gravity moves over to balance on my right-hand-side. This shift is the beginnings of scoliosis of the spine; my spine bends to the right, then to the left and then back again as it seeks to find a line perpendicular to the ground.
Notice the severe curve in the spine from right to left and then back again. Very painful.
Imagine, if you will, transitioning from laying down, to sitting upright, to standing, to sitting in a wheelchair, to putting on a prosthetic leg, etc. All these gyrations to the spine hurt like no other! At the risk of sounding obscene, imagine transitioning from sitting on the toilet to standing in a walker. This motion causes such pain that I almost always yelp out loud, like the dog that I am.
Welcome to my new normal!
Whew! Back from the tangent. One quick observation before moving on. I’ve never been the most highly motivated person in the world. That is, you often hear of athletes or businesspeople or others who are never satisfied with staying where they are, the must continually improve or they are not happy. Well, I’ve never been accused of being that! Instead, I’ve always been one who has sort of gone with the flow, taken things as they come and making the best of them along the way.
However, physical therapy is proving to be quite a different experience. Something changes the minute I walk through the front door of that hospital: I am not satisfied with my previous performance, I must do better and I’m not willing to rest until I do; they cannot throw anything so hard or dangerous at me that I’m not willing to try it; I won’t stop and take a break until my therapist literally begs me to (she actually makes me sit, tosses me a towel and tells me to drink my water!). But this is still not good enough for me. I say, “if you don’t make me sweat, if you don’t make me hurt, then you aren’t doing your jobs well enough and I’m not getting my money’s worth!” So, we work. We work until I have sweated through and through. We work until my limbs tremble from fatigue and my time runs out. Then, I get to the car, drive home, and count the days until I get to do it all over again.
From whence did this magical, mystical force come? I’ve never really felt it before. It is intoxicating. It drives me from one session to the next, each time trying to be better, do better than all the previous sessions. And I like it! Now I must figure out how to translate that into all the other areas of my life!
The last time I posted I referenced the stages of grieving. I suggested that perhaps I haven’t grieved as much as I should have, or I haven’t done it in a way that would be productive to the normal, healthy way of dealing with the vagaries of life. The last couple of weeks have borne this out. My mental, psychological state is not quite as it should be, nor is for members of my family. We are all in various stages of grieving and, perhaps more importantly, have all experienced some degree of trauma.
Let me explain. Without being morbid, during the past nine months, I was truly on the verge of death no fewer than three times, one only leaving me minutes to live without emergency surgery to save my life. Although I was intimately involved in almost every aspect of these critical times, there was one time when I was neither cognitively nor physically capable of participating in making life-saving decisions. Rather, in perhaps the most crucial of all these experiences Andrea was there, alone, to make all the decisions about my care. She couldn’t consult me (I was in a coma), and she could only get intermittent input from my trusted doctors. Yet, the only thing that stood between me and death was her resilience, trust in God and hope for a better future.
Imagine, if you will, just how much pressure this put her under. The strain of making all these decisions without a companion, a counselor, a partner. It must have been intense! Yet make the decisions she did, all the while appearing to the world to be calm, cool, and collected. On the inside, however, she must have been in absolute turmoil. Outwardly, she appeared fully under control. Inwardly, I’m sure she was a mess. Talk about trauma, I can’t imagine more trauma than that! … but that is her story to tell, not mine.
The girls all have their stories of trauma too. Not knowing if their dad was ever going to come home from the hospital alive or not, not being able to go to the hospital to see him (even to say goodbye, should it come to that). They must have felt all alone. Again, these are their stories to tell, not mine.
For my part, I too have seen my share of trauma and have had to make sense of it, one way or another. After all, I was going to lose my leg. I was the one diagnosed with cancer. I didn’t know if the cancer was malignant and infecting other organs. I didn’t know if I was going to live or die (at one point, my surgeon said that, if we didn’t act quickly and decisively, it would only be a few months, perhaps only a few weeks, but certainly less than a year, and then I would most certainly be dead!). When I received the news, I cried. Andrea was there beside me; I think she cried too, but I had withdrawn myself into a shell that I didn’t know how to get out of. There’s some trauma.
Then I got sick in the hospital with C. Diff. infection, yet they sent me home only to have a never-ending bout of problems that attends a dying colon. I couldn’t make sense of it, and I got mad at my situation… and I cried, a lot. Then, I felt myself slipping away into a coma. I wasn’t cognitively aware long enough to feel much, but when I awoke two-and-a-half weeks later in the hospital, not knowing how I got there or why, only knowing that I was restrained in bed and had a bag hanging off my stomach, I couldn’t make sense of that either, got mad, and cried… a lot. I think this was also probably traumatic.
But I don’t do trauma well. I think I learned that from my dad: be stoic, straighten your back and square your shoulders, get ready to do some hard work. But this is not so good. Indeed, it is not reasonable to expect that a relationship-system full of this much trauma does not have some components that begin to show signs of wear and tear, if not actually come to the point of breaking.
And so it is. I have hidden my trauma, buried it deep within my psyche. Some of the others in my family wear theirs on their sleeves. Sometimes the tension is palpable. Sometimes it is toxic. You see, life was never supposed to be this way. I had some dreams, some hopes and desires. Now, those that I valued so much have been taken from me. It wasn’t supposed to be this way! One day it hit me like a punch to the stomach. I sat on the edge of my bed and leaned out over my walker, dipped my head, and cried like a baby. It was never supposed to be this way! Never! All that I ever wanted to do, all that I wanted to be was now taken from me, it wasn’t fair, and now I was both mad and scared.
But, being my father’s son, I buried my emotions even deeper still, wiped away the tears and started to figure out how I was going to move onward. I wouldn’t even so much as address the issues of my failed dreams, my traumas, my hurts. If I pretend that they aren’t there, then they must not be (kind of reminds me of events leading up to and including January 6, 2021). But now I am to the point where the cost is too high. The relationship capital is all but depleted. The wounds are becoming too deep. I’m not in a rabbit hole, I’m drowning in a pit of quicksand and sinking rapidly. My traumas are becoming altogether too real and far too expensive. So, starting tomorrow, I start my search for a real trauma therapist. Hopefully, I’ll be up to the task of the hard work that I know it will take. I know that dealing with my trauma will be like coming face-to-face with my worst daemons.
This past Tuesday, June 1, we had to put our beloved dog, Sparky to sleep. He was 15 a year-old Shih Tzu. Even for that breed, 15 is a ripe old age. For the past several years he’s been developing brain cancer which has slowly been taking away his hearing, then his vision, then his ability to eat and walk. Finally, the cancer was taking away his ability to go potty. Alas, it was his time. Sad.
Fritz, our Golden Doodle, is left the lone dog in the family. Tuesday night we put him in his kennel at bedtime. He cried. A lot. He cried so much that Sarah took him to sleep in her room. Last night we put him in his kennel at bedtime. Again, he cried a lot, but Sarah was right there to take him upstairs to bed.
Having the dog sleep in her room is bringing her a lot of comfort. She was all busted up about putting Sparky down. It was, perhaps, the hardest on her. She came with Andrea and I to the vet’s office for the appointment, with Sparky on her lap. When the vet came out, it was Sarah who handed the dog over.
We all said our goodbyes and that was that.
Sparky and shared something in common. Cancer. It has gotten the better of him; it hasn’t gotten the better of me… yet.
There is something about cancer that focuses the mind. The news is always unexpected and is almost always devastating. Once you calm down from the sudden shock, things all of a sudden become much clearer: all the hours spent at work and not with family, all the worries about money, accumulating things, the kind of car one drives, the kind of position at work you have, all the other things that occupy so much of our mental space, quickly become far less important than before the diagnosis was given. The “thinness” of these things stands in stark relief against all the other, more weighty things of life. We all spend so much time in the thick of thin things that the things which should matter most (family, friends, relationships, nature, tasty food, dancing, music… the list goes on) altogether too often take a back seat to the immediate, the prudent, the practical. Such a waste. Cancer helps you to see this.
I spent three and a half months this past fall, laying in a hospital bed, contemplating cancer, my life, my relationships, my new normal, and morality (not necessarily mortality, but morality – in terms of meaning, possibility and agency).
To be honest, prior to my hemipelvectomy surgery I cried. A lot. I liked my left leg and didn’t want to give it up. It was one of my two favorite legs, and I was really rather fond of it; it kept me from tipping over or just walking in short, little circles. Then they put me to sleep (not in the sense that we put Sparky to sleep, though there have been days…), during which time my mind went to the most bizarre of all cartoon-like places, which was impossible to escape. It really freaked me out! Suffice it to say, I was scared out of my mind (whatever that means when one is under anesthesia)!
After I woke up from surgery I escaped my cartoon-like hell. The clearer my mind became, the clearer I became aware that, indeed, I was missing my left leg; the familiar bulge under the blanket that covers the legs was missing on the left side, I couldn’t stretch my left leg even though I really needed to, my foot itched, but I didn’t have one to scratch. It shocked me at first but then I started to become more and more accustomed to its absence. However, I couldn’t bring myself to peer under the covers to see what was really under them. I was too scared.
For the next five weeks I didn’t even take a peek. Now I can look at my body, to the place where the leg used to be. When I see myself in the dressing mirror of my room, to me I look horribly disfigured. I asked Andrea about it, but she says that it doesn’t bother her in the least. Then, I see the belt that hides my ileostomy bag and know that I no longer have a large intestine (which is another story). I think it is hideous. Andrea says that she doesn’t even give it a second thought. It amazes me how things can be/seem so different to different people, even over things so dramatic as these.
Since the surgeries, I wish I could say that I have taken life less seriously and have focused more intently on the things that truly matter the most. I haven’t. Rather, there has been so much going to doctors’ appointments, paperwork with the insurance companies, figuring out Social Security Disability (an unfortunate requirement of being on long-term disability leave), paying medical bills, attending physical therapy, and so on that it is almost a full-time job. I wish that was an exaggeration, but it is not. I would estimate that at least six hours per day are consumed with these kinds of matters. Indeed, as you mess around with some of these things (e.g., insurance companies and the Social Security Administration), you must be incredibly detailed and precise about them, or you will get screwed.
So, at this time I can’t go around philosophizing about the true nature of life, cancer, relationships, et. al. In fact, I find that my mind has lost much of the clarity that I thought I was going to have. The mundane has taken over. There is no time to think about the profound. I haven’t been able to take advantage of the opportunity that cancer might have given me. I haven’t focused on the things that matter most. And I am frustrated with myself.
But I go to physical therapy three days per week for an hour each time. I have decided that if there is going to be any good that comes out of cancer, amputation and a colectomy, I hope to find it through the focused, hard work of physical therapy. I’ve dived into the deep end and asked them to do their best to make me hurt, to make me sweat, to forget my limits and focus on the possible. It is proving to be the thing that is likely going to save me. And they work me, hard!
Learning how to walk again has been one of the hardest things I have ever had to do. My new left leg extends from my where my hip & pelvis used to be, all the way down to the ground. When I look at it, it seems rather long to me. In fact, even though I’ve seen many prostheses in the past, I’ve never seen one quite so long as this one. It is perhaps the largest prosthetic device I have ever seen.
The leg has three joints: the knee, the hip and the ankle. Yes, I put the knee first in the list, not because I forgot basic anatomy, but that the knee is the key to the whole thing. I has a small computer in it that controls everything. It senses where the weight of my body is, how much pressure I’m putting on the toe or heel, how far forward my torso is, and on and on. Depending on how much pressure I’m putting on which part of my new foot, the knee will either bend or lock out and stay straight. It controls the speed at which I fall into my seat when trying to sit in a chair. It prevents me from falling when I start to stumble. It is a pretty amazing piece of engineering.
Putting on the leg is a bit interesting. Normally, the socket of the leg would be affixed to the body using two ratcheting straps, much like ski boot buckles, that would go around the waist. However, because I have an ileostomy bag where the upper strap would go, that had to be removed and replaced with a shoulder strap that goes diagonally across my body, over the right shoulder and affixes to both the front and back sides of the socket. It has the net effect of pushing my body down into the socket and tight against my body
The unfortunate fact of the matter is, no matter how tight I sinch up the leg to my body, a prosthetic leg has no nerve endings, and my body can’t actually feel it. Sure, you can feel the thing strapped to you, but when you put weight on the leg, you cannot feel the actual leg; it feels like you have nothing there and that you might plummet to the earth by falling to your left. The net impact of this reality is: you have to put A LOT of faith in the fact that you have this thing strapped to you and that it will hold you up. My first few steps on the leg were made in sheer panic mode, as I couldn’t tell if there was anything there at all!
Now that I have been using the leg for a while and have become somewhat accustomed to it, I am actually beginning to “feel” it. That is, sensations, like dragging my toe on the ground while walking through a step, sends certain vibrations up the leg and into my stump. I can now discern those vibrations as my toe dragging. Same thing with other movements, positions, or actions. Each of these sends a different form of mechanical vibration, which in turn gets translated into something meaningful; some sort of biofeedback, to which I can adjust what I am doing. It is crazy! It is kind of like learning how to drive a car with a manual transmission. Early in the learning process things are herky-jerky as you learn how to use the clutch and gas pedals in synchrony while moving the shift lever, all to the mechanical feedback of the tachometer and vibrations of the engine. Once you grow in your abilities, pretty soon the cognitive aspects of these complex operations simply fade into the background, and you just start driving and shifting without so much as thinking about what you are doing. So too with the leg, I am beginning to automatically interpret the various mechanical feedback inputs and adjust my behaviors accordingly and am now starting to walk more easily and fluidly. This is all very much my personal Heideggerian experience of passing from present-at-hand to ready-at-hand (yet another story).
Currently, the nexus of my journey with Dasein comes into being with the journey down-the-stairs. This is by far the most frightening of all the activities of which I have had to learn thus far. In order to do it properly, you must see where you are going, place your feet in exactly the right spots at exactly the right moment, shift weight from one leg to the other and not look down. All the while, there is still no real sensation in the left prosthetic leg. But, putting away my trusty SideStix <sidestix.com>, I grasp the handrails of the staircase and put my faith into my leg and my growing ability to monitor these complex actions without thinking about them.
In order not to fall you must use faith. Faith that the left leg will bear your weight. Faith that you can place your feet where they need to be. Faith that the leg will bend at the knee at the right moment. It is a journey completely by faith. It is very much the kind of experience Kierkegaard describes as transitioning from the “Knight of Infinite Resignation” to becoming the “Knight of Faith.” This is perhaps the most challenging of all transitions.
In short, physical therapy is kicking my butt! It is both physically challenging and mentally/psychologically excruciating. Physically, I sweat profusely while learning how to walk. They say that walking this way is easily 200-300% more work than normal walking with natural legs. I believe them (whoever “they” are). Mentally, I must choose to forget myself, the pains I feel all throughout my body (they are very real and very painful), and my insecurities. I must trust in my therapist-coaches and believe that, with their help and instructions, I wont fall. I must overcome my deepest fears and believe that I will come out the victor. So, I push my therapists to push me, to make it hurt and make me sweat. If they don’t do this then they are not doing their job! If I don’t leave with my shirt saturated, then I am not doing mine.
Now, if only I could learn how to translate these lessons from the physical world into the experiences of the psychological world, especially when it comes to grieving for the loss of my limb and other body parts, as well as for the implications of all the challenges on my interpersonal relationships.
Perhaps I have not fully (or properly) grieved for the losses of my body parts, nor perhaps at how physically painful this all has been. Perhaps Elisabeth Kübler-Ross was right in describing the stages of grief of the living for the dying or dead, or in my case, grieving for my lost body parts and the implications for the rest of my natural days):
Denial – somehow this is a mistake, and I would rather hang on to my old (now false, but preferable) reality.
Anger – recognition that this is now my new reality and start to find someone to blame; it’s not fair!
Bargaining – the vain attempt to bargain for more time; if only I could keep my leg, my colon for a little longer.
Depression – now I’m down in the dumps and am going to miss my loved ones; I despair over my new normal.
Acceptance – this is my new normal and it’s going to be okay; I embrace it and my own mortality, that bad things can happen to good people.
Further, the interaction effect of not properly grieving with the fact that people are mortals with their idiosyncrasies is complex and dirty. The byproducts of people living through these experiences together usually results in some sort of trauma. These traumas are expressed by different people in different ways. Coming to grips with each other’s traumas and their manifestations of trauma is very challenging, perhaps even more challenging than learning to walk again. Often, working together through each other’s traumas leaves a lot of detritus in its wake. Once done, the damage can be very difficult to repair…
It has been a while since I last wrote a post. Frankly, I haven’t wanted to. The past couple of weeks have been rough, peppered with a few bright moments. Suffice it to say that I haven’t always looked on the bright side of life and it has been hard to bootstrap myself out of it. The reality of my situation has taken a toll on my psyche. My family has worked alongside me as well as labor under their own loads. Sometimes it seems so hard to bear.
However, in the middle of all of this I turned 54 years old. Believe it or not, I have never even imagined myself being 54. This is new territory for me. Nevertheless, Andrea took me to dinner. Or rather, I made reservations at one of our favorite local restaurants and had Andrea drive us there. It was lovely and I really enjoyed it.
Another huge piece of good news: As of April 22 the doctors are considering me cancer free! After having reviewed all the MRI, CT, X-ray and other scans, they cannot find any evidence of new tumors!
Over the past three weeks I’ve had three highly successful experiences at physical therapy. All of the therapists at the rehabilitation center, especially my direct therapist, are amazed at how fast I’m progressing. They are constantly barraging me with compliments on my progress. They are saying that, if I keep up the progress, sometime within the next three months or so I should be able to walk without the assistance of crutches or canes! This is very good news.
Here I am from a couple of weeks ago.
So, I seem to have been doing well enough at this straight hallway drill that my therapist wanted to throw me a curve ball. During my next session, she had the slalom cones setup and was trying to distract me by talking with me about buying groceries in Denmark… go figure
I’ve been feeling pretty good about the use of my new prosthetic leg. Very good. I look forward to each therapy session, to use the leg, try new drills and anticipate the day when I’ll be able to walk out of that facility on my own TWO legs… no crutches, no canes, no walker, no wheelchair.
But, in the middle of all this excitement a couple of things happened that felt like they were raining on my parade. First, I sold my motorcycle. Fall before last I bought a 2003 Honda Shadow 750cc. When I bought it, it only had 2000 miles on the odometer! Basically, it was a brand new motorcycle.
I was so excited to ride it, so the next spring I enrolled in the New Jersey required motorcycle driver’s course and received my motorcycle license. What a happy thing! But the summer came and went and I never took it out on the road. Then fall came, and my world came crashing down: Cancer! No left leg!
I was very sad.
Just over a week ago I sold it to one of the young men that attends Church with Audrey and Anna. He is a very nice young man and both Andrea and I really like him. He had owned one, almost identical to this one, but he said he had to sell it in order to come out here to Princeton to go to school. So, although I am sad, I am happy that the bike is going home to someone who will appreciate it, love it, and take good care of it.
I was melancholic.
However, in the middle of it all, I finally was able to get my second Covig-19 vaccination. It is hard to express in words just how relieving it is to get vaccinated against such a deadly pandemic.
For the past year we haven’t been able to do anything. We don’t go anywhere, do anything outside our family or the walls of our own home. School has been strained for the girls and has contributed to the overall sense of angst in our home. Not seeing friends, going out to dinner, taking walks together or with other people… it all takes its toll. So we are happy that we are that much closer to being protected and to not transmitting a disease to others.
Amidst all of this a good friend of mine, Randy Hudson, who owns Gold Coast Event Management, came over to the house to help me with a little project – he and his company are extremely good at what they do: putting up large events and making them look really cool.
In order to help speed up my recovery, we installed a set of physical therapy parallel bars so I could practice some of the drills at home.
Being vaccinated, Andrea and inited Randy and his wife out to dinner. This was the first dinner out that we’ve spent with other people. It was almost like getting vaccinated another time, except this time against the virus of loneliness, isolation, and just going plain old stir crazy.
Back to physical therapy
One of the things that they do at therapy is check my wounds and suture lines for swelling and the impact on my skin. The last thing they want is for the skin to break open and / or for infection to set in. After each session my therapist has noticed that a “hot spot” has formed and is puffing up a little. We’ve been keeping a close eye on it.
Then it happened, a few days ago, after PT, after I returned home, in the evening the wound broke open. About 1 cm. of the suture line that goes up my back erupted and nasty stuff started leaking out. How disheartening. We’ve been taking some pictures of the site and sending them to my surgeon, Dr. Gutowski. She’s been examining them closely. She asked me to come in on Thursday, two days ago. She examined the wound very closely. She “hemmed” and “hawed.” She discussed with her resident, who was tagging along. She brought Andrea back to the exam room.
Then she brought the hammer: this wound is not looking very good. There is a puss pocket just below the skin that is now finding an outlet through the hot spot; it has found a pathway of low resistance and has broken through to the surface. Perhaps antibiotics will clear out the puss and that with proper dressing, the wound might close on its own. However, there is a possibility that it won’t. She said that under normal circumstances she would just direct-admit me into the hospital and do surgery the next day (yesterday, Friday). But, after we counselled together, we decided to try the antibiotics for a few days and see how things go. If on Monday or Wednesday of this coming week things don’t look better, I will go in for surgery (either for Tuesday or Thursday).
My heart sank deep into my shoes when she said this. Another surgery. It is likely to happen. I’m tired of surgery, I don’t want another. Unfortunately, according to Dr. Gutowski, for people who have the kind of surgery I had (hemipelvectomy) it is not uncommon to have six or eight or ten surgeries to clear everything up; it truly takes at least a year to go through all the procedures and heal.
A year. That means about six or seven or more months to go. I won’t be able to wear my leg or sitting socket until the stitched wound heals enough.
So, this morning I texted over to Dr. Gutowski a picture of my wound. It had been, “weeping” all night long. She took a look and texted back the verdict: Surgery needs to happen, perhaps should have happened last week. I’ll check into the hospital tomorrow and then the surgery will happen Tuesday morning. I’m supposed to be home Tuesday evening.
A mix of the good and the not so good. It really has been a mixed bag. But, I suppose that is the way of life, nothing is ever fully good or fully bad; every day, sometimes multiple times in the day, you have a choice: will you take what life has to give you and interpret it as good or will you make it out to be bad, the choice is yours. I’m still looking for the solution, how will choose to look at my life. Perhaps one day I’ll see the hand of God in all things and take the bad with the good and be grateful for the whole of it, that it is all a blessing, that all things will work for my good, that one day I will rise triumphant over all things.
Today is Easter Sunday and the General Conference of the Church to which I belong (The Church of Jesus Christ of Latter-day Saints). I feel to opine. I have many thoughts today. Some of these thoughts may or may not be edifying, but in all honesty, I feel to capture them so that people (especially my posterity) my come to know me a little better and have greater insight into my experiences…
Challenges in Flight
Sooner or later the Phoenix rises to a comfortable cruising altitude and starts on its journey, to wherever its destination. Alas, sometimes even the bird has no idea where it is going but is only aware that it is going. Call it “instinct,” call it “hard wiring,” call it “self-determination,” or whatever you want, the fact is the bird is on its way.
It has been a little over two weeks since I’ve captured any of my thoughts, let alone share them with the world. Truth is, I haven’t been in a very good mental, emotional, spiritual space. I think I’m coming out of it now, but it hasn’t been a fun journey. Several issues are in play at exactly the same time.
First, during this time my leave from work has transitioned from, “short-term disability,” to, “long-term disability.” As I’ve been completing the paperwork for this transition, I was absolutely gobsmacked the word itself, “disability.”
Disability. Dis – to take away. Ability – the possibility of being able to take specific action.
Disability is something that happens to other people. Disability means there are things you simply cannot do that others with fully capabilities can. Disability means that special accommodation must be made to allow you to continue to live even a somewhat, “normal” life (such as there is, even if there is one or not). Disability was never on my plan; it never even crossed my mind. Yet here I am. The very thought of disability started to bring me down, or at least find the nearest rabbit hole and take a peek down the long, dark tunnel.
Second, without getting too graphic, I saw myself in the mirror the other day while I was getting dressed – by the way, getting dressed is no easy task, it takes about three times longer that it normally did and requires me to lay on my bed to put my pants and sock on – and the sight I saw in the mirror caught me off guard. My surgeries have left me with some pretty nasty scars and the amputation really is very severe. In an instant, I felt completely disfigured. I actually gasped.
Almost concurrent to the cognition that I am disfigured was the thought that I was similarly completely undesirable. That is, people must find it hideous to see such disfigurement and are repulsed by it. I even entertained the notion that my wife no longer found me attractive, let alone, if we were still dating, worth having a second look. Our relationship has suffered during this time, perhaps influenced to a certain extent by my own sense of dysmorphia. I’m sure this is a multi-factorial challenge, but disfigurement may likely be one of them.
Third, there is a great deal of background stress at home. I think everyone has it. Each of us is up to our eyeballs in things that must be done. Audrey and Anna are in the final 10 days of their college semester and the pressure is on; finals are later this coming week. Allie and Sarah have been in the big push prior to their Spring Break, which is ending tomorrow. All the girls seem to have something or another that they need to process and when they process it, it seems they need to do it with their mother. Each, “therapy” session Andrea provides for each girl takes no less than an hour and they need several hours worth each week. Then there are the natural demands that are placed on Andrea in the management of a household and the demands of her work. Not only does she carry that load, but she has to pick up the weight of the things that I am no longer able to do. She is pretty maxed out.
Then, fourth, there is COVID-19. Nobody can go anywhere or really do anything. We are all locked up within the same four walls and rarely see other human beings; our primary interface with the outside world has been through Zoom and Amazon, not exactly the most fulfilling ways to have relationships.
(Side note: every member of our family over 16 years old has now received her first vaccine injection; the second injections coming within the next couple of weeks. This is perhaps the best news we’ve had in a while. Hopefully once these vaccinations are fully effective, we can loosen up a little and start seeing people again, especially those who are likewise vaccinated.)
Needless to say, tensions run high. Feelings get hurt. Skins are rather thin. Without pushing anyone under the bus or getting too graphic, relationships have been strained. The little boy inside my mind has a hard time dealing with this and starts to look even deeper down the rabbit hole…
Signs of Improvement
The prosthetist with whom I work, Wayne Lawall, has done miracles for me. He has built an artificial leg for me, which leg is comprised of top-of-the line components. There are precious fewer components that are more sophisticated than those that he has incorporated for me. As can be seen from some of the pictures and videos previously posted, this leg is something to behold. I’ve just started working with it in earnest during physical rehabilitation this past week. So far, I’ve had three sessions. This last session they had me up and walking on the leg, not using the parallel bars, but using forearm crutches!
The therapists say that I am progressing faster than expected, but that I might progress even quicker if I was fatter!
(Side note: Believe that? It turns out that articulating the new knee is easier if I carried more weight. This is the first time I’ve ever been told that fatter is better… they say I’m one of the leanest patients they’ve ever had to “deal with.” I should introduce them to my mother and wife… they’ve had to deal with much more from me than my weight!)
This new way of walking is incredibly difficult. It is also frightening beyond belief. I now have to learn how to balance in new ways, shifting my weight from leg to leg, twisting my hip(s) and trusting that the new leg will hold me up. This is perhaps the scariest part. I still lack a lot of feeling in my left stump, where left side movements are like stepping into the void. I have to “rewire” my brain and trust something that (according to my mind) may or may not be there!
(Side note: I actually have no real “stump” on the left side as the entire pelvis was removed and my left leg tissue folded backward on itself to form a new butt cheek, so all I have is a scar and tissue that runs straight across the pelvic floor from my right leg to my left side. Funny part of this is that, when my left butt cheek happens to run into something – say a doorknob or open drawer – I feel it on the front side of my left leg, often just above where my kneecap should be. It is one of the most bizarre sensations I’ve ever had.)
Further, all the movements of my new left leg are initiated from my low abdominal and low back muscles. I have to crunch these muscles back-and-forth in order to get the leg to move. Believe it or not, this is especially difficult when I try to sit down. It is quite painful, especially shortly after a therapy session.
I’ll post a video of me trying to sit when I make my next post.
Reasons for Hope
I hurt all the time! I cannot lay down on my left side (something I used to do frequently when sleeping). My new left side cannot carry my weight without significant discomfort; there is no structure there to support me and my muscles and organs press heavily on my sacrum and right-side pubic bone. It is as if there is a new set of scoliosis cures to my spine. Very painful.
But those pains don’t even compare to the pains I get over the length of my spine, especially my low back bones and muscles. Getting out of bed is a new experience in pain every time I do it. It seems to be even worse in the middle of the night when I have to go to the bathroom (which is every night between 2:00 am and 3:00 am). It sends shock waves and shooting pains that make me want to scream out loud (but I don’t because I don’t want to wakeup Andrea, who now is one of the lightest sleepers I know). Getting out of a chair is almost as bad. Because one cannot stay in the same position all day and must move, the pains never stop. Unfortunately, even the relatively high doses of medication prescribed to me hardly seem to touch it. These pains make me cranky.
But there is reason to hope, at least a little bit. One of the things Wayne Lawall has done for me is to build a “sitting device.” This is a kind of bucket that holds my left side and is formed much like the socket for my prosthetic leg. It straps around me and has a flat bottom.
It is like an exoskeleton to carry the weight of my left side and level out my pelvis. The hope is that, over time, this device will help to straighten out my spine and reduce the pain that I experience. At least that is the hope.
I exercise somewhat at home and seem to be getting stronger and stronger every week. I have to increase the strength in my abs and low back more, but the gains in my upper body really help me a lot… I can carry my weight in my walker and can now balance more easily while using the crutches. I would really like to join a gym… darn Covid!
If you really want to know, the average left leg weighs about 40 pounds. When I went into the hospital in September, I weighed 182 pounds. Then I laid in bed for seven weeks. I went home for Thanksgiving and ended up in the hospital again (in septic shock and sicker than I had ever been in my life). I was in the hospital for almost four more weeks. Then I went home but had to go back to the hospital for another surgery and stayed there another few weeks. By the time I was came home I weighed about 128 pounds and truly looked like a cancer patient.
The surgeon was adamant: put on some weight boy, or you’ll be in trouble! When you put it on, remember most of it must come from protein or your wounds won’t heal correctly.
Ah ha! A thought problem. I like those.
I found a weight gainer powder with over 1,200 calories and 50 grams of protein per serving. I was to have a serving in between each meal.
Several weeks later, I now weigh about 138 pounds.
I went to the prosthetist’s office on Tuesday and was able to test the new leg again.
I made laps between the parallel bars for over 30 minutes straight before starting to sweat. But then did I sweat. The prosthetist says that walking with an artificial limb like this is at least 200% more labor intensive than it is with both of your natural legs. I believe it.
While testing the leg we asked the team whether it would be a good idea for us to install a set of parallel bars in our house for me to practice with. The prosthetist said that it probably wouldn’t be worth the expense but didn’t discourage us. However, he said that I would most likely not need the bars for a long time once I entered serious rehab. But… if we did have some it couldn’t hurt for practicing walking on the days when I’m not at the rehab facility. So, we explored with him how we could get a used set of bars, if he knew someone selling some or otherwise. Unfortunately, he said no and that buying a new set would be kind of expensive.
Then came the hammer! He, knowing that we have a rather long mud room (actually, it is more like a causeway) made us a deal that we could not refuse: if we bought a pair and installed them in our house, when we are done with them he would buy them from us so he could use them in his new office (I had no idea he was moving to a new office; his current one is a converted house where the various main floor rooms are used for fitting and testing prosthetics – I get to use the “living room”… which they affectionately call, “Room 1,” as if it was more like a hospital than a converted bungalow).
How could we resist such an offer? I ordered a set yesterday.
Tomorrow I head over to the physiatrist’s office at the rehabilitation center. There, he will evaluate me, the leg and help make a plan for my treatment. I’m quite excited! This represents the possibility of independent mobility… some freedom… the ability to again contribute more to my family. I have a lot of hopes for this next stage of the journey.
Notwithstanding all the forthcoming excitement around my new leg, it has been a rather difficult week.
I hurt… all the time. I hurt a lot.
The impact to my spine of only having one leg is far more severe than I had imagined it would be. Because I have to shift my weight to one leg and position my leg under my center of gravity my spine has to twist. It twists into something that resembles scoliosis; there is a definite curving of the spine that is unnatural. This twisting is exacerbated by the fact that I still have herniated discs between L4-L5 and L5-S1. Further, the hip flexors and other low back muscles must compensate for the shifting of the weight. They are in a perpetual state of soreness. Also, the remaining right hand side pelvic bone, where I the full weight of my body sits when I’m in a chair, is also very sore. The analgesics that have been prescribed for me do not cut through this pain.
I don’t sleep, I’m exhausted… all the time.
Because of the ileostomy I have to wear a bag. That bag fills up at various times during the day. The stoma is most active during times of rest. As my daughter, Audrey, who studies Human Biology says, quoting her professors, “To rest is to digest.” Consequently, I have to go do my business about every three hours, resulting in a state of anxiety and sleeplessness. I constantly worry that the bag will explode (which it has done on two occasions already) so I stay awake, waiting for the next “visit.”
In my state of pain and exhaustion I begin to have mental challenges. I start to wonder and ask the questions, “Why? Why me?” This, I’ve learned is very dangerous. As soon as I start to entertain these questions, I begin to go down a perilous journey, a dark path. This dark path leads to nowhere good. I know. I’ve been there before. It is not a place I want to be. But frankly, it is a road hard not to go down, especially when I start feeling bad about myself and situation; I miss my left leg and large intestine! Why didn’t God warn me about the cancer leading to the amputation of my left pelvis, hip, and leg? Why didn’t the doctors think through the implications of all those antibiotics they were pumping into me, creating the perfect conditions in which C. Diff. could thrive, leading to the death of my large intestine?
Well, the cancer must have been growing for some time. Its symptoms were being masked by my perpetual sciatica and herniated discs. Frankly, it would have been tough for anyone to see it. And then there is the C. Diff. All those antibiotics were eliminating all the bacteria that could have entered my body after such a radical, life-saving surgery. It truly was with the best of intentions that the doctors did what they did, though in retrospect I sure wish things could have been otherwise.
So, with the conditions being created for the perfect storm of self-pity, I made the conscious decision to go back to the sure-fire way to pull myself out of the dark hole: service to others. I went to work. I have limited opportunity to engage or serve others with anyone outside of my immediate household. It was my determination to serve those who are closest to me. I would buoy them up. I would do little acts to improve their situation or make their day better. I would think of whatever I could to make my family happier than there were before they engaged me.
Then the most amazing thing happened. It all blew up in my face!
It turns out that much of the service I was trying to give was not welcome to those to whom I was trying to serve. I would do little things here and there – they would get upset. I would say little things every now and again to brighten their day – they would be offended or have their feelings hurt. This is not what I intended. This is not what I had planned. It is not what I hoped for. And, frankly, it goes against all the counsel I’ve heard in Church ever since I was young. What the heck is going on?
Now my feelings were hurt. Place that on top of the dark hole I was already heading down, and I was heading for a nosedive. So, I called upon my graduate training…
During my graduate school days, we were trained, drilled, quizzed, and tested in challenging assumptions; looking behind the surface for what may really be going on, examining the implications of ideas. We would take the theories of Psychology and tear them apart, looking for the assumptions and ideas on which the theories were based and then challenge them. We would examine these assumptions to reveal the extent to which the assumptions were based on deterministic philosophies or allowed for moral agency. I wrote and published several peer-reviewed journal articles on this very topic. I used to be smart.
Because I can’t sleep anymore, I have a lot of time on my hands in the middle of the night. I used that time to examine the assumptions that were underpinning my philosophy of service. As I mulled this over and over again, I made a realization: I was serving based on what “I was thinking,” not based on what they were thinking. That is, I was trying to follow the “Golden Rule,” to do unto others as I would have them do unto me. But there is a problem in this rule. Sometimes the things that I would have done unto me are the last thing that others would want done unto them. The assumption on which I was basing my acts of service and words of kindness was that the way I was offering up my service was what I would have wanted; I took no thought as to what they really wanted. For example, if my wife is struggling over something (perhaps even something I did), all she really wants is an embrace and words that reassure her that she is loved. She does not want to be served in a silent way or reminded of all the kind things that I’ve done for her… that dog won’t hunt!
My service must be based on a deliberate examination of what each person wants, where they really are. It is nice to give someone something that you think is of value. It is far better to give them something that they think is of value.
Okay, I’m not perfect. Far from it. However, as I try to look beyond myself to see the other as the other, to see them in their context while trying to look outside of my own, I am starting to come to know them for who they are, what they need, what they want. When I know this, I know everything I need to render the service required. When that happens, I begin to find that my service becomes more meaningful to them and helps pull me out of the dark holes into which I am prone to dive.
Years ago, I did leadership development consulting work with groups from Lockheed Martin. They are a HUGE defense contractor. And when I say HUGE, I mean HUUUUUUGE! Of course, my part was just a very little portion of work done in a tiny niche of the company, the total value of my contracts with them was really worth no more than rounding error of some of the main business areas of the company. Though it was a big deal for me (it was the difference between eating that month or going hungry), it wasn’t such a big deal for them, even if I was providing training for many of their up-and-coming new technical leaders.
At about this same time the Marvel “Avengers” movies were starting to become a “thing.” And when I say a thing, I mean a HUUUUUUUUGE thing (at least for the geek squad). The very first of the Avenger movies was Iron Man. I watched the show several times (usually in an airplane traveling to and from my gigs at Lockheed Martin… Irony?). Then it dawned on me, the logo created for Stark Enterprises was almost identical to the one used by Lockheed.
Coincidence? I think not!
One of the cool parts of Iron Man is how Tony Stark (the head of Stark Enterprises) uses a special reactor as the source of energy to replace his failing heart. With this reactor he is able to build this superhero body suit, full of high-tech gadgets that he uses to go around defeating the enemies of all things good. His suit even allows him to fly. Cool.
I went to visit another surgery group about the possibility of reversing my ileostomy. I’ve been waiting for this appointment for some time with great anticipation as I really don’t like this silly bag hanging off my side. I was told that I could be a candidate around 3-6 months post original surgery. So, I’ve been hanging on each week, counting down to this appointment. So, the time came. I went. The doctor said that, indeed, I could have my surgery reversed. It would take a little longer before I could be considered, but it could be done.
Then he brought the hammer: even if we reversed the surgery, I was going to be relegated to a lifestyle that I might enjoy even less than the one I have right now. That is, I could never be more than about two hours away from a bathroom and then when I had to go, I would really have to go! This would make many things about day-to-day living very challenging, let alone the other things we might like to do (road trips, flying, etc.). It was the surgeon’s suggestion that it might not be a good idea, but that we really should take some time to think about what we really wanted and which direction we should take – to reverse, or not to reverse? That is the question.
Bummer. Felt as if the Phoenix was heading for a nosedive and might not be able to pull out of it.
Good news! I met with my neurologist after having completed an MRI. She reviewed the report and studied the images. We discussed what she saw.
The findings are conclusive: I have a brain!
Better yet, I don’t have Parkinson’s Disease. Best of all, everything appears to be normal. Although I have bilateral tremors in my hands, the verdict seems to be that this may be the result of taking certain medications (many of which I am actually taking) and or a natural and predictable outcome of a lot of trauma (which, apparently, I’ve had – she explained to me that having lost a leg and nearly losing my life to sepsis actually constitute significant trauma). The tremors should go away, over time.
A couple of days later I was scheduled to see my prosthetist. He’s been working on a couple of things for me. First, he’s building a custom device called a, “Sitting Socket.” It provides some structure to the side where I no longer have a pelvis and allows me to spread my weight more evenly on both sides so I can sit for longer periods of time. You see, right now all my weight is borne by my right pelvis, which gets really sore and tired, really quickly and then radiates the pain up to my lower back. In fact, my lower back perpetually hurts. As I’ve researched this a little, I’m not the first person having a hemipelvectomy to experience low back pain. This is one of the hallmark complaints of people in my same situation. If not corrected, the result of supporting all my weight on one pelvic bone can result in scoliosis-like symptoms, putting my spine at risk for further injury. A sitting socket may help remove some of these symptoms and provide some relief. This first test fitting of the socket gives me a lot of hope that I may get that relief. I’m really excited.
The second thing that the prosthetist is working on, obviously, is a prosthetic leg. During this visit I was given my third test-fitting of the leg and a few trial trips up and down the runway in his office.
The leg is made of many high-tech components and gadgets, primarily made of steel, aluminum and carbon fiber. It is very cool. Though it is a little short (it will be lengthened), I was thrilled to be able to try it and make a few good steps.
It gives me great hope for the near future when I will go into rehab and really learn how to use it.
And thus, we come full circle: with this new leg, I have become Iron Man (though I cannot fly… not quite yet!).
Side note: back when I was in the hospital, I made a firm commitment to myself that I would not go down any rabbit holes and ponder the dark paths of self-pity and regret. Those paths lead to nowhere good or productive. Instead, I committed to focus on the good and positive things and embrace my, “New normal.” Though I would not deny my reality or become Pollyanna (I’ve got to know what I’m really up against and the limits, boundaries and possibilities of this new normal), I was going to create a narrative that embraced possibility, agency and the otherness of others.
My resolve served me well in the hospital. Every person who came in or out of my room was new to me or was someone familiar but in a new context (i.e., in the hospital) and I could thus preserve their otherness. With this preserved, I could see others as people who could / should be treated with respect and gentleness; I should use my agency to ensure their agency is maintained and that I do not Pidgeon-hole into some preconceived notion of who or what I thought they are/would be. This perspective allowed me to see others as opening my horizons, expanding my view and creating new possibility for me (and, perhaps, for them). It is a truly remarkable perspective. It brought me a lot of joy to see others from this perspective. I hope it brought them joy to be with me too.
Now that I am home, I am back among the familiar, the mundane, the categorical. At home, I am the “dad,” the “husband,” the “worker,” the “cancer patient…” Others were the “wife,” the “child,” the “dog…” By falling into the familiar it is easy to forget the otherness of others. From this perspective I already know what I need to know about them, who they are, what they think, how they will react to various inputs, etc.; there is no need to give them possibility, agency or difference. From this perspective I lock them into their category and me into mine, and thus we can continue our life in regular, predictable patterns. A death sentence. If you want to kill a relationship, have a preconceived notion of how the other will respond to you, and when they respond as you predict, then you feel you have the right to have your feelings hurt or feel justified in getting angry, having your feelings hurt, etc. Being at home can make this altogether too easy.
When things are familiar, it is easy to slip down the dark and forbidden paths. Even though I made a commitment to myself not to go on these mental journeys, it becomes very tempting to go there. I confess, in the past week or so I’ve allowed myself to take a few steps down these paths to the point where I was wondering why God has been punishing me so harshly – why would he, with his foreknowledge, allow these things to happen to me, or at least not provide me with a warning that things were going wrong so I could get them fixed before radical measures had to be taken? Why couldn’t I be blessed as others have been to have a “normal” life, to have all my limbs and body parts?
Whoa! Time to put the brakes on this train of thinking. Things are what they are, and people are truly other. My life will never be what it once was. I will never have some experiences again that I so much enjoyed in years past (just think of skiing for one). So now it is time to think of new things to do, new ways of thinking, and new dimensions to relationships that I never knew or thought of before.
Perhaps joy doesn’t come from participating in certain activities. Perhaps joy is in realizing and embracing the otherness of others.