Friends and family. Sometimes, in the bustle of our everyday lives we lose touch with those that sustain us the most. Now, as the world has come to a screeching halt they have become the most important asset. My kids have been amazing. Before the collapse of modern society they, most of them at least, were great at keeping touch. My oldest daughter was always the leader in keeping in touch with me. My oldest boy was good but like his old man, time gets away from him. And that’s ok. He’s an adult and he has his own life. My youngest boy is probably the worst, he has the least ability to keep track of time of all and I had to call him to see how he is. Again, it’s alright. He has a job and a girl and he is living his life. My youngest daughter is just now starting to get busy. But she almost rivaled her sister in checking up on the old man. I was always grateful for the communication.
Now, the kids are all in constant touch. They all have accrued a solid education on what my immunocompromised ass is or isn’t supposed to do during a pandemic and they have been amazingly supportive and critical at the same time. They applaud my attitude but chastise for going anywhere. They want me to stay in and never go out, but I have to. We need things. So they yell at me. Constantly. And I love them for it.
My friends have been amazing also. I always knew I had an great circle but I never knew how much so. Friends that I spoke to frequently now call or text me constantly. Friends that I have maintained contact with sporadically are reaching out. They all know my situation and they are all concerned. It has really touched my heart and to their credit, I have made sure that they are all safe and healthy. Physically and mentally. Despite this unprecedented event, they all seem to be handling it.
Then there’s my special lady friend. She isn’t doing so well.
In the short time I’ve known her I have recognized and reveled in her free spirit. Before the pandemic she went into the city for work. She occasionally worked from home but not more than two days a week. Going into the city was her break, her routine. It made her appreciate home. Now, she appreciates getting out of the home more than ever. Some birds are not meant to be caged. I’m worried about her. What she is experiencing is beyond stir crazy. She’s depressed and on top of it all, she feels like the walls are actually closing in.
The confinement. This is where the pandemic really hits home. Well, you know, besides dying that is. I’m a fixer. I want to help. I want to jump in my car and visit her. I want to hug her and tell her it’s going to be ok. I want to take her for a ride. I just want to keep her company.
NH, like most states, is under a Stay-at-home order but the details on riding aren’t clear so I took it out. Worse case scenario, a cop will turn me around. But not before I ask him, without being a smartass, is there any better “Social Distancing” than a motorcycle?
I needed to get out. I needed to turn off the news. The constant flow of bad news was wearing on me. Wind Therapy was the only answer. My bike called to me.
I was reluctant to take her out. The tires are worn, the oil is old, it’s not detailed to my satisfaction. My appointment for the yearly service is Tuesday, a dialysis buddy is a bike mechanic that works from his garage, and I really should have waited until it is serviced to ride. I already dropped the new tires, oil and filter and air filter to him. But I figured a quick 50 miles would be ok. I checked the oil level, tire pressure, turned the key and my baby roared to life. After a sufficient warm up I was off.
One thing I love about where I am is my proximity to Maine. I am twenty miles from the border in two different directions. From a riding perspective this is a beautiful thing. New Hampshire and Maine are incredibly scenic. The views of the distinctly New England style homes and farms is complimented by the barrage of fresh, fragrant air in your face as you roll the roads. NH is nice, Maine is even nicer.
I drove a familiar route yesterday. I first passed through the town that borders NH. It is a bittersweet experience, driving through it, parts of it reek of abject poverty evident in the crumbling houses and broken down cars in the drive. Then you come upon the beautiful restored farm house with a imported car in the drive. A town that resists the influx of gentrification yet quietly acknowledges its need of their tax dollars.
The route provided ample supplies of both the rundown and the restored and I can say that the view hasn’t changed much since last year with one wonderful exception. People.
The people were out. Families were together. Sitting around makeshift campfires. Burning brush. Raking leaves. Playing games. Riding ATV’s. I even saw one family having a picnic by the side of a river, cliché’d red and white blanket and wicker basket and all. People waving to me, the kid with the fishing pole and waders signaling for me to rev the engine.
I don’t remember EVER seeing that before.
I can’t explain it in any other way, it’s the Coronavirus. For all of the bad it has created the forced togetherness is bringing people together. That is a beautiful thing that I could write about for volumes. But I won’t, I’m just going to leave it right here.
When I got home I was sufficiently refreshed in both body and spirit. Sure, part of it was the motorcycle. It always refreshes me. But the scenery; the wondrous sights of family, community, dare I say normalcy that I was blessed to see refreshed me in so many other wonderful ways.
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.
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.
I heard a radio host yesterday asking people to call in and define 2019 in one word. “Tumultous”and”chaotic” were used frequently. Myself, I choose “disappointing”. I am disappointed in our lack of respect for human life as first responders are targeted for death, people are beaten and killed over the color of their skin and innocents are being slaughtered over failed political and religious ideology. I am disappointed in the pursuit of money, power and belongings at the sake of character, integrity and morality. I am disappointed in our fascination with celebrity without merit, gossip without respect for boundaries and the idea that bad behavior is acceptable if it accomplishes your selfish agenda. On a personal note, I am disappointed in myself for losing the optimism I once had so much of, that I let life get to me this year instead of customarily plowing through the pile of horseshit looking for that pony that must be in there somewhere. I hope that next year is better, if nothing else that people stop being ugly to each other and we start treating each other as brothers and friends we have yet to make. And I hope that I get back my power to create my situation instead of being defined by it. And I hope that anyone who suffered through this post has a great 2020.