I don’t need a reason to withdraw from Social Media. Who would blame me when I am overloaded with disinformation, vitriol, hatred and myriad videos of just plain bad behavior? I used to be able to handle it then I realized that handling it wasn’t necessarily enough, it was getting me down and affecting my already tenuous grip on normalcy (whatever that means). Keeping up with friends near and far, combined with cute puppy videos used to do the job on balancing me out but lately it’s not enough. Even my friends posts are starting to bother me.
Anyone who knows me knows that I am a people watcher. Not to analyze them or criticize but instead to further my understanding of people and what makes them unique and of course what binds us together. My desire to keep up with friends and co-workers both past and present has always been my primary reason to have FB. I like knowing what they are up to and it is a form of people watching. I watch what they post, good or bad, and how they behave, good or bad. Some of my FB “friends” are having a rough time, those I support the best I can. Others are doing ok, I’m there with a good word when needed. Then there is the ones that are doing great, or at least they make it look so. Those people I have always tried to be genuinely happy for. Despite my lot in life, I always make sure that I am never a victim of the Green Eyed Monster. I don’t envy wealth, possessions, pics of expensive cigars and liquors and cars. Hey, I’m happy for them and will continue to be so if they are good people.
I try to reject the notion that social media was designed for us to compare lives. That would be alienating and not the stated goal of bringing us together.
But I’m thinking of taking a break from Social Media anyway. For a rather unique reason I suppose. I have fallen into a different kind of people-watching and it is becoming destructive to me and my ability to maintain positivity– people watching as a sick guy and comparing notes with my own situation. It’s a terrible habit in which I observe one of my friends doing something outdoorsy such as hiking or biking, and I ask myself questions such as, “I wonder if he can walk more than a mile without his legs swelling into balloons?” “Hey, do you think he can work a whole day without wanting to pass out from nausea?” “Does he have to take a nap after something so minor as food shopping?”
It’s not envy or jealousy. I’m happy for anyone who has been blessed with wealth or success. I just want their GOOD HEALTH.
If you think about it, it’s a well-established sentiment in our society. When addressing a pregnant woman with “what are you having?”, the answer is invariably met with “as long as he or she is happy and healthy.” As if the minimum expectation in life is good health. Trust me, it can be taken for granted amidst the scramble for education and vocation. I’m here to tell you that good health later in life is not guaranteed and without it all of those other things simply don’t matter. Even out of reach.
You don’t need to feel good to be happy. But it sure helps. Stay healthy my friends, it really is the most important thing in life.
As I begin the healing process after yet another visit to the Hospital I find myself motivated to blog more. I found the urge curious, then I realized that, for better or worse, the Hospital is where this blog began.
I was at Tufts Medical Boston in 2017 for severe edema. My transplant had failed suddenly in 2016 and I had been plagued with ailment after ailment for months. One of the symptoms was retaining fluid in my legs. After retaining so much fluid in my legs that I couldn’t get my pants or a shoe on. My blood pressure was out of control and I was on the verge of heart failure. I would find later that they removed 30 pounds of fluid from me in 5 days. You read that right, 30 pounds.
When I had my transplant in 2011 I left the hospital like the Tasmanian Devil. I was back to work in 31 days, which was unheard of. As soon as I was able I hiked, biked, screwed, climbed, walked and hit the gym regularly. I had my health for the first time since I began failing badly in my 30’s. The expectation I was given was at least 15-20 years of health before maybe needing another Kidney. When it failed after 5 I was livid. I was mad at the world, mad at my Dr. for not telling me that my particular disease was known to stay in the body and attack the new organ. I felt betrayed, let down and without hope. I was miserable.
My Dr. came in on my third day and asked me if I had any interest in talking to a team of interns. His concern was that the current batch of students were adept at medications and protocols but lacked good ol’ bedside manner. In short, he felt their people skills sucked. He felt that my story would be a good one to share. I wasn’t going anywhere so I said yes. As he was leaving he turned to me and said, “Don’t just spill it, let them pull it out of you.”
Several hours later 5 interns entered my room. They pulled chairs and gathered around me. They asked me several questions and, while following my Doc’s advice, I let them pull it out of me. Over the course of an hour they heard the tale of Bill. Bankruptcy, foreclosure, lost job, divorce pending, behind on rent and a insidious and debilitating disease. One of them actually wiped tears away from her face. I don’t need to be told how it went, they left changed by the experience.
I sat back in my bed that night and it occurred to me that maybe others may benefit from the shitshow that is my life. I knew that one platform was a blog. I had blogged before to mixed results. I wasn’t consistent in my theme or my frequency and I let it die. But this time I was inspired. I wanted to tell my story anonymously to the world just to get it out and relieve the weight on my shoulders. Ok, I asked myself, what is the name going to be? Immediately I recalled an argument I had once had with my wife in which she was haranguing me to be honest and open with our youngish children about the severity of my disease. She was mad that I sucked it up and faked how badly I felt in front of them. That was what I did, it kept them happy. I also hid it from my employer as long as I could for obvious reasons. As the argument peaked she yelled at me, “OK Superman I guess you’re fucking bulletproof!” and stormed out of the room. It hit me.
“Superman can’t find a Phone Booth” was born.
I knew that it was a dated reference. Many of my readers have never seen a phone booth or the old reruns of Clark Kent running to a phone booth and changing into his suit and saving the day. It was a perfect metaphor for how I felt. In the face of evil, in this case disease, I was running out of ways (phone booths) to find a suit of strength to combat my disease.
I swore that I would pull no punches. It would be what my early readers (some of you are still around and I love you for it) would describe as raw, visceral, inspiring and brutally honest. I told my story. One reader commented that it was the best blog she had ever read and posted about it.
There was a time recently that I thought that I was done telling my story, that it had run its course. But now I know that Superman is back. I managed to remove that Kryptonite necklace hanging around my neck. I found a phone booth and my suit is back from the dry cleaner.
Expect some more raw, some more visceral, some more brutal honesty as I continue to tell the tale of the shitshow that I call my life.
5 days in the hospital and no diagnosis why my BP is out of control and I keep experiencing spontaneous nausea and vomiting. They made a small adjustment to one of my meds for the BP but overall every test on my gut came up Negative. Oh well, it’s not the first time I’ve defied medical science.
Believe it or not I got some rest. Yes, you read that correctly, I got rest in a Hospital.
I’ve been really, uncharacteristically lazy for so long. My illness has really beat me down. While I actually have very little to do, I have been having a hard time doing it. I was almost out of Spoons. (If you are not familiar with the Spoon theory here you go) https://wordpress.com/post/goodtobealivetoday.com/5461 . On top of all of it I’ve been beating the ever-lovin’ shit out of myself mentally for being so lazy. It was a constant, vicious circle and I was exhausted.
Hospitals are not known for letting you sleep. Nurses wake you at all hours of the night for blood and vitals and DR’s traipse in all day long. I’ve ended many visits more tired than when I went in. It’s been anything but quiet and restful. This one was different. Because I told no-one that I was hospitalized and visitors were prohibited due to COVID, this visit was very quiet. Consequently, I had a opportunity to do some extensive mental, emotional, character, are-you-the-person-you-think-you–are inventory. Long story short I came home mentally refreshed.
The biggest takeaway is that I need to give myself a break once in a while. I am conflicted by my resolve to act and feel normal and the knowledge that I have increasing physical limitations that simply won’t allow it. I need to listen to my body when it tells me “nope, ain’t happening”. Beating myself up does nothing to help how I feel. I think if I can do that, forgive myself for moments of weakness, I can get back to the old Superman. For now, I need to take it slow.
“Have you ever thought of harming yourself?” My favorite question of the Hospital admitting process by far. In the many times that I have been asked this, especially lately, I have answered with a knee-jerk and resounding “no”. Thursday, before I could stop myself I said yes. My first reaction was to try to backpedal, but then I said Fuck it and went with it. Let’s face it, as little interest I had in talking to a hospital therapist or clergy, I hated the thoughts I had been having more. The Social Worker entered my glass enclosed room mere moments after I said it and began asking me a million questions. I was guarded and tentative at first about answering. I wasn’t raised in a “talk about your feelings” type of household. I could better describe it as a “suck it up Buttercup” environment. Courtesy prevailed, however, and I endured. Apparently, my answers failed to raise any major red flags with her and after a declined offer of clergy or further discussion she left without incident. I closed my eyes and braced for the next shoe to drop. “Hopeless”, the nurse exclaimed. I opened my eyes. “What?” “Sorry”, he said. “I couldn’t help but overhear.” “I’m listening”, I said. “You don’t want to end your life, you are just failing to find things that make you want to keep going.” Wow, holy crap and WTF. He nailed it. We talked about it until he had to move on to his next patient.
I have NEVER been a suicide-minded person. I have also never considered myself a “happy” person I have perpetually danced on the edge of happiness and what I lack in joy I make up for in positivity and perseverance. I have never hated life and I have a huge problem with the selfish nature of suicide. I believe that if somebody doesn’t want to go on they don’t have to, but I also believe that it doesn’t end the pain, it only passes it on to the living. But those dark thoughts have been creeping closer lately. The days are shorter. The sunlight is being coy. It’s cold. I’ve been in constant pain and sick more frequently. I live in a touristy area and it is the wrong season. I’ve spent many 3 AM’s sitting on the side of my bed, head in hands, looking for reasons to go on. I’ve been in a bad place and couldn’t get out of my own head. I’d forgotten about hope.
I need to figure out how that happened and make sure it never does again. Did I just forget that I have children who love me? Friends that want me around? The good times yet to be had? The amazing and beautiful woman that has come into my life when I believed I would be alone forever? The gorgeous sceneries yet beheld behind the bars of my new Harley? Most important, have I forgotten that even if I’m not needed as badly as I, and all fathers I suppose, once was does it mean that I am not wanted around? All of these things are contingent on looking forward to tomorrow with a fresh and hopeful outlook.
I don’t know what happened to all of these things but I’m going to spend this current visit working on that list of things that await me when I get home.
I have NEVER projected hopelessness before and I don’t plan on doing it again. Hope springs eternal, pain is temporary, life is precious and death is permanent. I’m so glad that I had the opportunity to refresh my outlook before it was too late.
When I first got married my wife and I had a few hobbies. With no kids and a few pets we spent a good deal of time (and money) on tropical fish. It was a fun hobby, we had 3 tanks. A 20 gallon in the bedroom, a 44 pentangular in the dining room and a 55 gallon in the living room which was reserved for aggressive tropicals such as the Oscar or the Red Devil. That tank was beautiful. And expensive. Not just the equipment, the fish also. It sucked when they died.
My wife and I had a running joke. Don’t ever say “gee, the tanks are doing well. We haven’t lost a fish in a while”. Whenever we did we found a floater the next day. Not one to believe in jinxes, it was there just the same. Apparently, it applies to hospital visits also.
2 weeks ago I remarked proudly to my girl that I haven’t been hospitalized in 2 years. This is significant because dialysis patients typically get hospitalized at least once a year and I was happy that I was an exception to the rule. The next day I went to the ER.
I hadn’t felt well for a while. My energy was way down, my stomach was doing backflips and I was fatigued way beyond the usual. I feared that I had passed the wonderful phase (the whole time I’ve been on dialysis) of feeling good despite the thrice weekly beat down on my body. I was preparing myself for the possibility that I was finally at the stage where I had to resign myself to feeling lousy all the time. But that night was excessive. After barely being able to climb my stairs I went to get checked out. 4 hours later I was being transported by ambulance to another hospital. I had excessive fluid in my lungs and a fairly large sac of fluid around my heart. I was there for a week.
The good news is that they were able to get some of the fluid. The bad news is that to get all of it they would have to stick a needle into my heart and drain it. A very risky surgery. So I have to live with it. As for the stomach, I was diagnosed with a bacterial infection which is very treatable by antibiotics.
I feel great today but it’s been a hard road back. I’m pushing myself everyday to be active and try to regain some of that strength and energy. I think I have my mojo, finally, and I’m going to run with it.
One lesson from this is that regardless of whether I believe in jinxes or not, I am going to be very careful what I say it loud.
Then again, that’s good advice for anyone isn’t it?
One of the benefits of living in your childhood home is the memories, the connections, the triggers that bring back the memories of your youth. Both good and bad I suppose, but since I have grabbed my psyche by the metaphorical balls of late, so to speak, I have been able to focus more on the good things.
A tough realization of late is that I am a big kid at heart. I love playing with small children. I enjoy dumb comedies. I say goofy things and I like to be silly and I still think nothing is more satisfying and fun than lying on the floor playing with my dog. Charlie Brown nailed it when he said, “happiness is a warm puppy.” It sure is, not much makes me happier. Charlie Brown is my hero.
I think it has affected my social life. A funny instance occurred a few weeks ago when I was out on the boat with a female companion. We were moored in a popular spot where the water is shallow for a hundred yards or so from shore. People moor there and hang out, drink or eat and swim in the shallow water. Ducks in that locale are famously used to people and are not shy about swimming up to boats. A family of ducks approached my boat and I instantly exclaimed “look, duckies!” My companion looked at me like I had three heads. “Duckies?” I realized that she thought I was out of my mind or grossly immature. Oh well. “Yes, Duckies.” I said. “Sorry if it seems weird but I’m just a big kid at heart.” I leaned over the bow and made quacking noises at my visitors. I still don’t know if that’s why I haven’t heard from her since.
I’m tired of fighting it. With all the battles I have fought with my health and other matters, my youthful, a nice way of saying emotionally stunted I suppose, outlook has kept me going and I won’t apologize for it. It’s my way of not letting my disgust with the world I currently live in from tainting my desire to move forward.
I actually think it is what my small but loyal circle likes about me and what the core of people who look to me for inspiration (not being cocky, I actually do have some patients and readers who look to me for a lift) see in me.
It’s really quite simple. Before life kicked the everloving shit out of me I was a happy, eager and optimistic kid. Without his spirit, his happy memories and almost Pollyanna’ish approach to life, older current me would be lost.
I don’t just like to be silly and goofy. I need to be. I do not,will not and cannot allow others to bring me down if I allow that inner child to exist within me. I’m the biggest kid in the room.
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?
get the reference?
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.
The Tao of Bill 