I’ve never been described as patient. Now, its all I can be.
I want to get out and enjoy Spring. It’s my favorite season. I can go outside finally. But I can’t go anywhere where there are people. This virus is really fucking up my Spring. And maybe my summer and fall. But there’s not a damn thing I can do about it. Patience.
I’m officially on the transplant list. The typical wait time is 3-6 years. I have been on dialysis for 20 months. I get credit for those. Still, I have 1-4 years unless I get a donor. Transplants are postponed, like everything else in the world until further notice. Patience.
I met a woman. She’s the total package. Attractive, smart, funny, and fun. We got off to a rough start but I was lucky enough to get a second chance at a first impression. She had me firmly entrenched in the “friend zone” until I clawed my way out. She’s great. But she is hesitant to put a toe in the cold water. I guess I’m the cold water in this scenario. It’s not me, it’s every guy she’s gone out with before me. I can’t say if they are good or bad but I don’t think they did right by her. She needs that and I wonder if she knows what it is like to be treated nice. I’ll show her if she lets me. It will take work. And time. I think we’re going to be great when the walls come down. Until then…
We live in a vain, narcissistic and selfie-obsessed world. We have all had to step around people blocking sidewalks and paths taking pictures of themselves. We all have that FB friend who posts pictures of every meal and of every stop they make. I know a woman who has no less than thousands of selfies on her phone, she is constantly picking up her phone and snapping a shot. The worse thing is she is over 40 and still making “duck” faces. Ladies, please. You need to know when you are too old to do that.
I never caught the selfie bug. I hate pictures of myself so I NEVER take selfies. In fact, I dive into bushes to avoid being photographed at all. Photos of me are rare because I just don’t like how I look and how I feel.
They’re like mirrors.
I don’t look at them either.
Mirrors are not a marvel of invention. It’s just glass, made from sand. Yet they wield an incredible power. They can force a person who looks into it to not see the whole picture but to only focus on the flaws. The most beautiful woman in the world could look in the mirror and immediately focus on a tiny birthmark on her forehead. And that birthmark troubles her, and brings on an insecurity so powerful that she is rendered unable to see her beauty.
Of course, there is another reason why one might not like mirrors. They just don’t like the person looking back at them.
I recently had lunch with a dear friend and the “man (or woman) in the mirror” came up. I haphazardly mentioned it in conversation and my she immediately teared up. Confused, I patiently waited for her to enlighten me as to the cause of her tears. As it turns out when she was younger (pre-puberty) she had Alopecia. Yup, at the age in which kids are the most cruel she was completely bald. This wonderful young lady, I have no reason to believe that she was any less wonderful then because she’s pretty damned amazing now, was so traumatized that she wouldn’t look in a mirror. I let her tell her tale of bullying and general harassment and let her compose herself. Once it was appropriate I offered up that I was speaking more about looking in the mirror and not liking the person you are.
“It was both” she said. The bullying made her not like herself. The bullies had done their damage.
She fortunately grew hair as a teenager but it wasn’t a magic elixir. The scars remain.
The tragedy is that her condition, and the subsequent bullying did far more damage than just mere insecurities about her appearance. It massively affected her entire self image, physical, psychological and emotional. To the point that she didn’t want to look in the mirror. She is mostly over it, but it’s still bubbling under the surface. 0
Despite having blogged about this topic before, our conversation made me revisit it.
For the longest time I made it a strict policy to not look at any reflective surface except the mirror while shaving. Partially due to a fear of a massive blood loss from a shaving cut, also that for the longest time I hated how I looked. All I saw was an overweight guy with several jowls, pale complexion and a flabby physique. I also knew that even if I was able to overcome all of those physical things, I still didn’t want to look at my reflection because I didn’t like who I was as a person. The same with photos, which I would rather dive into a shrubbery head first than be caught by the camera lense.
I believe, hell I know, that there are some seriously morally reprehensible people who have no problem looking at their reflection. I also know that there are plenty of people with physical flaws, some downright unattractive, that can look in the mirror effortlessly. I have never been either one of them. I envy them. I have always been blessed/cursed with a heightened self-awareness masquerading as a moral compass. I had the wonderful skill to be markedly aware that I was not on the right path morally and spiritually yet have no desire to work on it.
Until one day when I forced myself to stand there and take a good, hard look. I did an inventory of what I could change about my appearance and what I couldn’t. That was the easy part. The belly could be vanquished by better choices in food, a gym membership and a little self-discipline. The pasty complexion could be remedied by going outside instead of sleeping until noon. The sunken eyes, well a sharp reduction in my alcohol consumption was all that was required. The receding hairline and bad teeth, well I would just have to live with those. Again, as hard as it was for a person who wrapped in a towel as I passed a mirror after showering, it was still the easy part. Liking the guy that I did see as a person proved to be far more difficult.
Self-examination, if done properly, requires a keen and unflinching eye and you need a goal. You have to be a Forensic Accountant to do it right, for the inevitable outcome is that you are going to find things that have to be brought to the boss’s attention regardless of how well they are going to be received. When I turned my powers of observation on myself I found out more than I wanted and not much of it was good. But I was determined to do a deep dive and really, for once and for all, improve myself and be the person I wanted to be. It was exactly as hard as I thought it would be. But through brutal honesty and an unflinching eye I learned what I had to do.
My behavior, my attitude, my sense of self, my humor and my relationships with those close to me all needed a veritable shitload of work. It started with my children. I stopped fighting with them and reminded myself that I’m supposed to be the adult in the room. I stopped fighting with my wife because I’d have more luck wrestling a spoon from a fat lady at the Cheesecake Factory than I would winning an argument or changing a viewpoint with her. I started being nicer in general to everybody. I became a better listener. I had known all of these things were my Achilles heel and once I started I did it all at once. But it wasn’t until I got really sick and hit rock bottom (around the time that I started this blog) that it all fell into place. No longer the driving force that I once was in my children’s life that I was; no longer the “go-to” indispensable man at work; no longer the breadwinner and backbone of my family I realized that I would have to find a new purpose. I am happy to report that life showed it to me in due time. I have been willingly forced into a life of altruism; volunteerism, charity, Freemasonry and part-time impromptu amateur motivational speaker. I even occasionally serve as an inspiration to someone who thought that they hit rock bottom. Until they heard my story.
I almost like who I have become with a few minor exceptions.
My friend that I had lunch with did have difficulty finally staring at her own image and accepting what she saw. At the end of the day she realized that those cruel, heartless pricks that made her feel bad about herself didn’t have any power over her except the insults. They didn’t know her, the person she would become and how awesome she is. She is now a happily married, independently successful businesswoman and an amazing, funny and caring person. She wins. But nevertheless, she still had to deal with both issues I have spoken of, not liking her reflection over the physical and the emotional.
Me, I had a longer journey than she did, but I got there. The same way we all make major steps forward.
Adjusting to life on dialysis has been a challenge to say the very least. At the beginning, when I begrudgingly began treatment, I found the schedule harrowing and highly inconvenient. Commute time, prep time, getting on the needles and setting up the machine, 4 hours in the chair (which is surprisingly long and uncomfortable to stay still for that amount of time), coming off the needles with the accompanying pain and bleeding and then being evaluated as fit to leave…it’s at least 5 hours per day. It’s almost a part time job when you add it up and a big chunk of my day 3 days a week. But I got used to it. The problem I found was that I, not unlike every other patient, was washed out and tired rendering me essentially useless for the rest of those days.
It’s been a year and a half now and not much has changed. There has been some progress on some fronts. I have a potential donor, which I normally don’t get excited about because every person to date that has offered didn’t take the next step when asked. The next step is calling my team and inquiring about the process. Nobody to date has done it but him.
He was told to lose 30 lbs when he called and I found that to be unacceptable. What if I was dying? Would they put me on life support until he lost the weight? At that point I wrote him off, only to have him text me that he was down 12 with 18 to go. That is a glimmer of hope and I will leave it at that.
I’m officially on the transplant list. Finally. I received a Pager in the mail on Friday that I am to wear in the event that a matching kidney becomes available. The wait time is 3-5 years with a credit for time on dialysis so I’m basically halfway to it, the only obstacle is that I have a bunch of antibodies that I picked up in a transfusion when I almost bought the dirt farm last year. This series of good events has inspired me to step up my fitness. Although I am in decent shape, according to my dialysis nurses I’m a fine specimen by their standards, I really want to go into this in the best shape possible. So despite my frequent walks, calisthenics and overall attention to my diet, I have begun an actual workout routine. To solidify my commitment I joined a fitness center.
In my area of NH there are no Planet Fitness or Work out Worlds. I would have joined one a long time ago. I discovered this place quite by accident. My mother started doing Physical Therapy for a leg injury and she told me about the place. As it turns out, a place that I have been driving by for years is not just for PT but is an actual fully equipped Gym complete with every machine you need, free weights and a crossfit room with my favorite accessory…the heavy bag.
I joined immediately.
The challenge is how many times a week I can go. I’ve gone on a few dialysis days and I always go on the off days. Essentially, I go when I feel up to it. I have been really working hard and it seems to be paying off. In addition to feeling stronger, many people have told me that my physique has changed a bit. That my chest is prominent, my shoulders pop through my shirt, my gut is smaller, my arms look bigger. All that is fine and good but the bigger picture is that I am doing something that seemed unrealistic and unattainable.
But I’m doing it. All of the people that have told me what my limitations are or should be are eating their words. They can’t define what I can and can’t do. They are simply not me and they need to understand that.
I have good days and I have bad days. Lately the bad days have been more frequent and I find myself at home feeling like a giant shit burger and I get mad at myself. I then remind myself of what my real limitations are, that I am doing the best I can, that I am not just accepting my lot but instead fighting it. But the realities are there, the other voice tells me that it’s ok to not feel great all the time. It happens. Still, I continue to feel that I am not the typical dialysis patient and that I need to push myself. On those occasions I get down on the floor and do pushups or I go to the club and I move as much weight as my body, on that allotted day, will allow.
3 years ago when my kidney failed I thought that it was something that I could work through and I foolishly joined a gym. With bloated legs (water retention was brutal), a very overweight and out of shape body and very little stamina I worked out to the best of my ability 4 times. The results were not good. I was weak, washed out, bloated, sicker than I wanted to acknowledge. On my last exercise of my 4th workout I was on the weight bench. On the bar I had a weight that I used to warm up with. Not much at all. I got pinned under it. I actually had to have a good Samaritan pick it up off my chest. Embarrassed, I immediately left and never went back. That feeling stuck with me.
Today, I tried the same weight on the bench press that buried me. To my amazement, I benched it 10 times.
Today was a good day.
Life happens fast and we are all dealt a hand that we must either fold or play. I’m playing mine. It’s the results accomplished on a good day that are going to carry me through those days when I’m mad at myself for not being able to climb a set of stairs without needing to sit down. Those are the bad days.
We all set goals. I have adjusted mine to simply work my ass off to ensure that, until my miracle happens, I have more good days than bad.
There was only one person in the waiting room besides myself, a woman sitting patiently in the corner. This particular waiting room is not a very chatty one, it is mostly populated by very sick people. It was not lost on me when I was under their care that I was one of the healthier ones there, I was only getting shots and infusions for anemia and other renal-related issues. Most people in there were getting chemo. I respected them and consequently felt a sense of reverence towards the woman in the corner. I took out my phone and played around for a while.
“Do I know you?” she asked. Startled, I looked up from my phone. I wanted to give my usual response to that question and say “Do you watch porn?” but I restrained myself. “I don’t know. Maybe.” I replied We talked for a few minutes and it was determined that she didn’t know me. It was at that time that Lauren poked her head out the door and I politely excused myself and went to talk to her.
Lauren brought all of the ladies of the center out one at a time. One by one they asked me how I was doing and what I had been up to. I gave them all the Readers Digest version and I kept it very positive, I hate to burden people with my problems. I touched on dialysis, some of the issues I have dealt with and my possibility of transplant in my most self-deprecating, humorous, and matter of fact manner. One by one they excused themselves and went back to work. Except Lauren. She stayed. She wanted me to tell her the truth. So I did. But I still did so in a positive way. Then she had to go back to work so we said our goodbyes. I jokingly asked her if she was still married. She laughed, wished me well and then gave me my fourth huge hug of the day. I turned to leave and as I did my sole companion in the waiting room said something to me. I don’t remember what but it was enough for me to go over and sit down.
What I remember was that she commented on what she saw and heard. She was taken back by my positivity and remarked that it was just what she needed that day. I decided that it was a good idea to stick around and talk to this very nice woman.
She told me her story and I told her mine. She was there for treatment for Rheumatoid arthritis. I didn’t have to tell her that I knew how bad that can be. I listened intently as she told me about her RA and how it has affected her life. She was very brave and I knew immediately that like most with a chronic illness she was a fighter. But something in the way she was talking told me that she was wearing thin with it and like most of us, she was looking for a good reason to keep fighting. As the conversation continued I realized that I was right. She actually said it, that she needs a reason to go on.
I don’t consider myself the best listener. In theory I am, I want to hear what people have to say but my problem is that I want to interject, offer advice. All because I want to help. But in this case I just listened to her. She clearly needed to talk to someone. I was momentarily taken back by the similarities in our situation. One big one…give me a reason to feel optimistic. My take on this is simple, looking for a reason to go on isn’t merely to counteract those dark moments, which all people with chronic illness experience, it is much more, it is looking for something that is stronger than the nagging urge to give up.
When it was my turn to speak I seized upon one thing that she spoke of that piqued my interest. Purpose. “Ok. You noticed how the nurses all knew my situation and commented how well I’m doing with everything? That’s not an accident. It’s my purpose, my role in life. To be the one that makes that caregiver a break from the sad and miserable people. To be the one that shows that attitude matters. And do you know what else, it’s all an act sometimes.” “It is?” “Sure, often I feel like absolute crap but I tell ’em that I’m doing great because that’s what they want to hear. It helps people. Some know better but they respect what I’m trying to accomplish. It’s my purpose in this world, unfortunately not a paid position, to offset the negativity. It’s a role I fell into but once I did I realized that it was something that inspires others into being more positive. “It’s hard sometimes” she said. “Believe me, I know.” “Well, I find you inspirational” she said. “Well, I find you inspirational as well.”
At that time the door opened and she was called in for her treatment. “Well, it was nice talking to you” I said. And it was at that time that I received my fourth big hug of the day.
Here’s the rub. I shouldn’t have even been there that day. I was there the day before to do my lab work and I hadn’t noticed the caveat about 12 hours fasting before doing it so I dropped it off and went home. So is it a coincidence or destiny that I would come back, foul mood and all, to see Nichole who wasn’t there the day before; Lauren that didn’t poke her head in while I was there; and meet my new friend?
I don’t believe in coincidences and I don’t believe in destiny. I do believe that sometimes things happen for a reason. I got as much out of talking to her as I think she got from talking to me. It was a very good use of my time.
Be open to opportunities to talk with someone who may be down. Be nice. Find your purpose. When you find it…go with it.
Where were you today? Me? Amazingly, inexplicably and entirely uncoincidentally I was again in the exact right place at the exact right time.
Today started as most days. My alarm went off at 445 and I laid in bed, enjoying the snooze cycle that grants me a 9 minute reprieve from the agony of getting up. In order to make it to Dialysis on time I have to be out of the house by 5:10. Of course I got out of bed at the last minute and I didn’t know that it snowed the night before. After removing the snow and ice I was running behind. I was in a bad mood.
As it turned out the clinic was running behind and it didn’t matter that I was late.
It was a miserable treatment. The needles hurt like hell from the minute they went in. The machines seemed to be beeping and pinging more than usual and I was really annoyed. Amazingly I managed to fall asleep but after a mere hour I woke up in agony. I had flinched (spasmed) in my sleep and one of the needles infiltrated my fistula. In laymen’s terms the needle punctured the wall of my vein. It’s excruciating. And it also meant the end of the treatment. They had to take me off so that I could fight another day. I left 2 hours early with a sore arm and a big blood stain on my expensive new sweat pants.
As I got into my truck, fuming, I remembered that I had lab work to do at the hospital. It was up the street so I decided, despite my mood that I needed to get it out of the way. I walked into the hospital, went to the lab and went to the window to make sure that they had my order. They did and instructed me to wait so I sat down. It was then that the door to the lab opened and it was Nicole.
Nicole the lab tech is a ball of beautiful, charming and sweet stuffed into a tiny 5 foot 1 inch package. I haven’t seen her since I started dialysis (the clinic does most of my lab work now) and I was really happy to see her. As it turns out she was happier to see me as she gave me a huge hug.
“Oh my god, we were just talking about you the other day!” she said. “Anything good?” I replied. “Only that we were hoping you were doing well. We miss your humor around here.”
She completed filling the 8 (yes, 8) vials of blood for the labwork, walked me to the door and gave me another hug. At that point my day had transformed into a good one.
Then it got better. Lauren from the infusion center walked in.
Lauren was once the topic of an entire blog. Gorgeous, smart, funny…and married. That little detail always left me unfazed and when I was getting my infusions I shamelessly flirted with her. She didn’t mind, in fact I think she enjoyed it. Here she was, discussing a patient with Nicole. As she turned to walk out she instantly recognized me. I was awarded my third huge hug of the day. “I can’t believe you remember me” I said. “What? Forget you? Never.” “Is that a good thing?” I inquired. “Everyone always asks about you.” “Can I go in and say hi?” “Sure. I have to go take care of something so wait in the waiting area and I’ll come out when I can to get you.”
I followed her to the infusion center and patiently waited.
October 4, 2018 I woke up to a team of Doctors standing at the foot of my bed. It was early. or at least it seemed like it was. I hadn’t slept much the night before. The head doctor began listening to my lungs, feeling my legs, being a general nuisance as the rest of the white smocks scribbled frantically on their notepads. “You won’t remember me, sir but I’m the doctor that was on duty the night you came in.” He was looking me dead in the eye. “I’m having a hard time believing that I’m looking at you right now. You were that close.” “That’s what I keep hearing.”I said. “I must have been in bad shape.” “Bad shape doesn’t begin to cover it. You were on the edge of death. How do you feel now?” “Grateful.” “You’ve been given a second chance . Take advantage of it. You may be going home in a couple of days if you feel up to it. You need to walk for me before I sign your release.”
I rolled out of bed, with difficulty of course, struggled to my feet and began to slowly walk out the door. The team followed me out and watched as I walked to the nurses station and back. I was wobbly but I did it. The doctor asked me when I had mastered that, to his knowledge I had failed the day before. “Last night while everyone was sleeping.” It was then that I noticed Olivia had joined the group. “Bill is a determined one” Olivia offered. I smiled at her. The team left my room. “I want to go home.” I told her. “A couple more days I think. Your fever is still erratic.” “I can’t take being in bed anymore.” Her concession was to sit me up in a chair where I spent almost the entire next two days. I continued to try to put the pieces together.
It was my ex wife that filled in the holes for me. She painted a vivid picture for me of what it was like to see me like that. She had visited me every day, I was impressed. At one point or another all of the kids had come to visit me. Unfortunately they all came when I was sedated. The sight of me with a breathing tube, unconscious was a bit much for my youngest daughter. My oldest son, who was on his way to visit his girl friend, was told to turn around. He asked why he couldn’t come in the morning. He was told “Because your father might not make the night.” Of course he rushed there.
October 6, 2018 I was released in the morning. Mom came to pick me up. When I got home I sat on the deck, enjoying some natural sunlight for the first time in 11 days, and opened my mail. The first letter I opened was from Medicare. My health Insurance had been cancelled. Effective that day. Turns out my SSDI had gotten approved and I was now fucking rich and wasn’t eligible for state assistance anymore. I tore it up and went inside.
I had just fallen asleep in my recliner only to be woken by my mother’s best friend Arlene. “I didn’t think I would ever see you again, Billy. Welcome home you tough bastard.” “Was I really that bad?!” I asked. It seemed I was asking that to a lot of people. Her face said it all. Many more townsfolk would say that very thing to me in the ensuing days. They all thought I was going to die.
There are lot of takeaways from this whole incident. I was grateful and impressed with the Hospital. I was thankful for the support of family and friends. I awoke one morning in the dialysis room only to find one of my 3AM buddies Jeff next to me patiently waiting for me to wake up. He had been there for 45 minutes watching me sleep. Now that’s a friend. Later that night two more great friends and their wives visited me. They sat for hours with me, they walked the halls with me, supporting my weight when I wavered. Of course I’m haunted by the way they were looking at me. The words “Dead Man Walking” came to mind. They were scared and it was disconcerting. But overall I am moved and eternally grateful to them for the visit. It really meant the world to me.
Another takeaway is that I am proud to have been gifted with toughness and a survival instinct. In order to survive, one must have a reason. I must have had plenty of reasons to defy the odds, as I was told so many times that I did just that.
I’m a fighter. I’m stubborn and I never quit. This incident is just more evidence that it wasn’t my time. I’m not ready for a dirt nap. My life is compromised but it is not over. I have weddings to go to and Daughters to give away. I have grandchildren to meet and motorcycle rides with my boys. I believe that in my lifetime there may be a cure down the road for me. I want to be there if it does.
My last takeaway? Even if I wasn’t awake, my ability to fight death is there and it is stron. Even unconscious, I do not fear dying.
I fear not living. And that is a powerful thing.
I’m also grateful to be here to tell this story, and that is also a powerful thing.
“Oh, he’s fine” she said. She then began to laugh, if you could call it that. A nervous laugh of relief if anything. My wife had buried her face in her hands.
Very confused and in a bit of a haze, I asked why they reacted as they did. As it turns out, the Dr. had just cautioned them that when I awoke there was a distinct possibility that I could suffer some type of cognitive loss. My first words after being medically sedated for 2 days being a joke, they were convinced that I was ok.
But of course I wasn’t.
It took me a while to piece together the events of the previous 3 days. I had no recollection of them so I had to rely on accounts from my mother and my medical team. Both were being light on details and, even in my foggy state I knew that it wasn’t good. Initially, all I was able to learn was that I was rushed to a local hospital that was ill-equipped to treat me and sent me away after dousing me in ice to lower my fever. Which, by the way, was measured at 104.9, a fever that a man my age rarely survives. I was then taken 65 miles away to a hospital with a Trauma center and immediately heavily sedated as they worked to control the septic infection ravaging my body. I was sedated for 2 full days. At one point my mother was asked if I had a Medical Proxy and a Advanced Directive, AKA a DNR (Do not resuscitate.
My Dr. confirmed and explained Sepsis to me and the reasons for Sedating me for 2 days. Apparently I was extremely fitful as I was being treated and I kept tearing the breathing tube out (that was the first time I realized I had had a breathing tube). He was very focused on my treatment regimen going forward. My mother was light on details, she was very upset by the ordeal. It wasn’t until I spoke to the Night Nurse, a real good guy that worked every night that I was in ICU. I explained to him my need for info and my confusion about what had happened to me. He took off his glasses and sat down next to me. “A guy doesn’t get any closer to the other side than you did. We’re all amazed at your recovery. We thought we lost you.” “Really?” I asked incredulously. “Yes, if I wasn’t a religious man before I would be now.” He paused. “It was that close.” I could do nothing but stare at the white ceiling. “And you’re not out of the woods yet.”
What followed was a full week of restricted bed rest. I was severely limited in how much I could move because I had a temporary dialysis port put in my hip that was in danger of rupturing causing me to bleed out. For 4 long days they ran every antibiotic known to mankind through me until my fever stopped spiking. By Sunday I was able to be moved to a regular room.
I wasn’t out of the woods yet. The infection wasn’t done yet. I had several relapses plagued by sweating spells and rampant chills in no particular order. I wasn’t able to eat much. I was still forced to stay prone in bed, it would be 2 days before I could even sit up. I was in a private room but there was nothing private about it, nurses and teams of doctors were in there constantly monitoring my every function. My only reprieves, as it were, were my dialysis sessions upstairs.
Eventually I did stabilize, much of it was a blur. I did have plenty of time to get to know the nurses as I recovered. In addition to their youth and attractiveness they were very friendly and good at their jobs. I struck a rapport with a few, one in particular couldn’t get enough of my jokes and my story. She came in every time she had a minute and asked me more questions about my Chronic illness journey. Her name was Olivia.
On day 9 Olivia came in with the physical therapy team. They were tasked with getting me to walk. I had been bed-ridden for 8 days and it was amazing how atrophied my muscles were. 3 nurses got me to the hallway with the goal of walking to the end and back. I was only able to support myself for 3 steps and I collapsed. I would try 2 more times that day and I fared only slightly better then. I was returned to bed. Olivia told me that they wouldn’t consider letting me leave, fever vanquished or not, until I could walk.
By the end of that night I was able to walk the hallway end to end twice before collapsing into bed again.
Fine. Not the best word to hear, especially from a woman. In fact, I ran for the nearest bomb shelter whenever my ex (that word has a nice ring to it!) said “I’m fine.” See, Fine is actually an acronym for Fucked-up, Insecure, Neurotic and Emotional. But when I say it, I mean it. If only people would believe me. In particular, the damn social workers that keep asking me how I’m doing.
Today I met with the Maine Transplant Center. It is a second outlet for me to be listed in hopes of a donor. Despite having done every goddamn test imaginable with the exception of an Algebra question at the NH center, it is required that I go through the same orientation with Maine. Not the tests, but the financial, pharmaceutical, insurance, coordinator interview and of course social work.
This is the third time I’ve had to do this. I did it in 2011 before my first transplant. Nothing has changed since the first evaluation. I gave the Social Worker there nothing even then. If anything I’m more closed off now. Life has continued to deal me one setback after another, the biggest of course was losing my new kidney after only 5 years and putting me back at ground zero: broke, alone and in my mother’s fucking basement and I don’t want to discuss my damn feelings about it.
So when I met the Social Worker today, his questions were met with a resounding “I’m fine.”
It’s not his fault. He gave it a heluva effort. He did a good job and I liked him. He asked the right questions and I was happy to tell him all about my situation. I just didn’t display a satisfactory amount of emotion apparently. He pressed me on it and I gave him nothing. Finally he asked me to describe my coping mechanisms to him. I said “first I punch myself in the head and then I kick myself in the ass. Then I move on.” He laughed and asked me to try again. I put my arms on the table, leaned in and said,
“Sunday I got rejected and rolled over by a woman that I swore I was in love with. I was floored, flattened. I cried. I brooded all day, talked to no one, wrote a blog post about it and woke up Monday a new man. I processed it, sucked it up and shit it out. Done.”
I would best describe his expression as a hybrid of amused and annoyed. But he left it at that.
People don’t understand, I am an island. I am happy to have a support system, I just don’t use it. I am hyper self-aware. I know what’s wrong and right with me. No one can tell me anything about myself I don’t already know. This is what life has done to me and I’m actually fine with it. I will tell anyone my story if they want to hear it and I will be honest and open. But I don’t do it for validation and I don’t need help. I got this, I know how to handle it and if I don’t I will figure it out.
Why do people not understand me and my self-coping?
I’m not nearly as brilliant as Robin Williams but like him, I am a Sad Clown. I wear a smile to conceal iron teeth. I’m not ok but I’m not bad either. I’m not happy but I can be and until then I can fake it with the best of them. I’m unsure and anxious about my future but good luck getting me to say it aloud.
What can I say? I’m fine and it works for me. If you don’t get it then that is a “you” problem.
If the sun is out I take the motorcycle to Dialysis. If I have to be there then I’m going to arrive and depart with a smile on my face.
Most days I spring out of my chair, exit to the waiting area, grab my helmet and go. Sometimes there are people in the waiting room, waiting to pick up a patient. I know most of them and who they are waiting for. For the last 2 weeks there has been a new face, a woman, 70ish with a kind face, that I deduced was waiting for the new patient Bob. Bob is a 70ish ‘Nam vet who just started treatments. I’d never spoken to him but he looks like a nice guy, with a new unpleasant development in his life.
Today, as I exited the clinic and grabbed my helmet she spoke to me. “Can I tell you that you’re amazing?” “Amazing? Hardly. But thank for you for saying that. And while we’re on the subject, why exactly am I amazing?” I replied. “You bounce out of here, helmet in hand and ride a motorcycle out of here. After Dialysis. I don’t know how you do it.” “I have to”, I replied. “It’s the only way I can make it tolerable.” I sat down across from her. “I see Bob wears a lot of Harley stuff, is he still able to ride?” “No.” I had touched a nerve. “He can’t support the weight of the bike anymore because of…”she motioned towards the clinic door, “this”. “I get it.” I replied. “This is tough”. “Not on you. If it is you don’t act it.” I explained to her that it is quite to the contrary. That I have a tough time with it sometimes but I put on a strong face and do my best to make the most of when I feel good. She politely nodded as I talked, looking down at the floor. I asked her how Bob was handling it. She told me he is feeling pretty lousy but getting used to it. I found that to be a good time to tell her that I was the clinic’s Patient Advocate and offered to talk anytime she or Bob may want.
At that moment Bob came through the door. His wife immediately said “This is Bill. He’s the one with the Bike. “ “Hey, Bill. Nice to meet you.” Bob wearily sat down in the chair. “Nice bike.” “Thanks”, I replied. “Bob”, his wife spoke up. “Bill is the Patient Advocate for the clinic.” He looked at me and said “What do you do?” “I’m here if you need advice, recommendations about the dialysis process or just here to talk if you need it.” “Talk about what?” “About Dialysis. About the emotions you will feel and the aches and pains you will experience. We all go through it.” His facial expression showed total resistance. Then, before my eyes it changed. “Maybe I’ll take you up on it sometime.”
We walked out. He checked out my bike. I was careful not to ask him about riding. He then surprised me. “I’m thinking of getting a trike. I don’t have to worry about supporting the weight.. I can still ride that way.” “That sounds awesome, Bob. The more you keep doing what you love, the less sick you feel.” I winked at his wife. She smiled.
I watched as they got into their car. She drove. As they pulled out she mouthed the words “Thank you” to me.
I’m not sure I did anything remarkable, I just shared the best kept non-secret I have. Illness only wins when you allow it to. Keep living your life.
I woke this morning to an absolutely beautiful, cloudless day. Spring and Summer have largely evaded the Northeast so far this year so I deduced that I really had no choice but to take the iron steed to my Nephrology appointment. I saddled up for the 50 mile ride south.
As my window had suggested, it was nothing short of a glorious hour ride and I’m pretty sure I smiled the whole way. I made excellent time so I rode around a bit before I pulled into the Medical building the suggested ten minutes early. I parked Bella, wiped the dust and pollen off of her and went inside.
After I checked in I went to sit in the waiting room. Seeing the helmet, several people struck up conversation with me about riding, the weather, etc. I’m still amazed at what a conversation starter a helmet is. After several minutes of small talk, I was called in.
My doctor, who handles most of my needs including monitoring my progress on dialysis, glanced at the helmet, surveyed my jeans, boots, tanned arms and face and said “Well, I guess I don’t have to ask how you’re feeling, do I?”
“I could lie to you, Doc but I feel great.”
After a thorough 30 minute evaluation he concluded that indeed, I was feeling great. He ordered some routine tests and sent his Nurse in to do some follow-up exams. Her name was Madison.
Madison was very good at talking to patients and we immediately began talking as she breezed through her routine. It didn’t take long for her to start talking about her fiancé, and how he was critically injured at work. He is a tow driver and he was hit by a car. I suggested that maybe it was the opening for him to maybe get a better, safer job someday. That’s what I do, put a posi spin on things. She agreed. Then she said something that really resonated with me, “It seems bad things happen to the best people. As a nurse I see it every day.” “Can I expound on that?” I asked. “Sure.” “It’s been my experience that the illnesses and accidents create the best people.”‘ She was visibly intriguedby what I said. I kept it as brief as I could as I told her what Chronic Illness and my experiences in the blogosphere with the many Chronically ill bloggers that I loyally follow and interact with have shown me. That illness and injury bring out the best of us. I have stopped short of calling it a blessing, but it is undeniable that when faced with unpleasantness and uncertainty many people develop a true appreciation and zest for life that “healthy” people may never achieve. We love more, fight less, forgive more easily, breathe more deeply and waste fewer moments because we don’t have the luxury of guaranteed longevity.
Madison is young, I would guess no older than 23. She was enthralled by my thoughts but I suspect she is taking my word for it to a large degree. She is too young to have seen a lot of the ugly in the world. But I know that I gave her something to think about. She is a good nurse and I’m sure she is decent and kind to all of her patients. But I hope that she will learn to treat her more hardscrabble patients not with pity or sympathy, but instead as the warriors that they are.
Every day is a beautiful day if you take the time to find the beauty. It beats waiting for a better day that you may not be around to see.