Tag: illness

A very dark place

*this post is a continuation of a story. It will stand alone in many ways but for missing context please go back a few…*

There I was, a week after starting a new job, in the Hospital. It was late Friday night, and I was being processed by the Nursing staff. I hated this part, reviewing info that they already had in the system. Having to repeat my name and DOB every time I got an aspirin. I was distracted, and annoyed, I even felt bad for leaving my boss and my coworkers in a bind. I’m stupid like that. To be fair, I was scared. They were all but convinced that I was rejecting my new Kidney. That was something I just couldn’t process. I’m sure I don’t have to explain my concern, but try to grasp the emotions I was grappling with and the thoughts raging in my head. Was I going to lose what I can only describe as the biggest blessing of my life, a fucking rebirth, already? A mere 8 months previous I was on dialysis, sick and depressed with little or no interest in life and no hope for a future. The only thing stopping me from suicide was what it would do to my children. I now had a job, a possibility of a future, a girlfriend that I thought might be the one. Was I really going to lose all of that already? I was in the worst possible place.I had a sleepless night ahead.

I met with my Transplant Doctor the next morning. I really like him and I knew him well. His face said it all. He explained what was ahead. Bloodwork, Infusions of steroids over 2 or more days if needed, all hands on deck to get my creatine down. There were no guarantees that it would work, or if any changes would be permanent. I asked him how concerned he was on a scale of 1-10. He is always honest, he held up 8 fingers.

The only positive was that Cat was coming to see me. I asked her not to but she had already started the two-hour drive to my house to get my mother and then drive another 2 hours to see me. She wasn’t about to be talked out of it so I didn’t try. It warmed my heart that I had found someone that cared that much for me. They visited me, she held my hand the entire time. It was of great comfort. They stayed most of the day. When they left she whispered an “I love you” in my ear. It was a brief but profound moment of happiness. It was certainly a reason to fight, not that I didn’t still have it in me.

The people from work were all concerned. Especially Vinny. He asked about me frequently. He was concerned about me and of course he had to know if I was going to be able to continue. He did have a business to run. I posed the question to my Doctor. He wasn’t a big fan of me continuing. He felt that the heat in the kitchen and the tough working conditions were too harsh for me. But pending the outcome of my treatment, he left it up to me.

On Monday morning I tested below my normal creatine level. It was excellent news. They agreed to release me and I was told that future (immediate) retesting would tell if the damage (if at all) was temporary or permanent. As for work, my Doctor told me that it was still up to me to make the decision.

I made the wrong one.

The epileptic Carp

As they entered the Hospital Foyer, Bill made one last attempt to get his manager to leave him. He was having none of it.

The check-in process was fairly quick. It was early afternoon, the ER wasn’t busy. Being in an affluent community didn’t hurt as well. Bill’s home hospital was often flooded with drunks and victims of violent crimes. There wasn’t a lot of that in this sleepy Massachusetts town, he mused. Within 15 minutes Bill was seen by the ER physician. He was asked a bunch of questions about his health history. They did a run-up of blood work. The ER doctor was clueless regarding the episode. Bill was not surprised, no one else had ever figured out why he had these attacks either. The Doctor scribbled on his board, muttered something to his attending Nurse and went on to another patient. Bill was left to make small talk with his GM until someone came back.

To his encouragement, his manager didn’t talk about the events of the previous hours. He instead shifted gears to talking about some of the business matters that he wanted to review in the now cancelled meeting. It was a relaxed conversation and they actually accomplished something. Before long the ER Doctor poked his head in.
“Are you aware…” time stopped for Bill, he knew exactly what was coming…3,2,1 BOOM
“that you have serious kidney failure?” Bill high-fived himself mentally, just as he had called it.
“Yes, I am aware” he replied as he looked over at the furrowed brow of his boss.
“Are you being actively treated for it”? the doctor asked.
“Not as actively as I should, perhaps” Bill replied. “But here’s the thing, is it related to why I’m here?”
“Not that I know of” he replied. “I can’t identify the source of your episode.”
“Then we’re done here unless you have some suggestions.”
“See your Nephrologist. If you give me his contact information I’ll have your labs forwarded.”
He gave him what he asked for and they left.

It was a quiet car ride back to the office. Bill decided to just get it over with.
“I have Kidney Disease” he offered. “Now you know.”
“Well something has to be wrong with you, you were flopping around on the conference room floor like an epileptic Carp.”
They shared a laugh. Then Bill asked, “Does it change anything?”
“Like what, you mean your employment status?”
“No.” Bill rephrased his question. “Is this something that I should have told you when you hired me?”
His manager didn’t flinch. “That’s why we have health insurance, you dumbass. How long have you had it?”
“Since I was a teenager. It’s unpredictable in its progression. I think it’s getting worse.”
“Do you think you should have told me on the interview?”
Bill stroked his goatee, stalling.
“Yes and no. It really hasn’t affected my work that I know of. I don’t have a crystal ball so I don’t think about the what-if’s. When I met you, I wanted you to see the man for the job, not some sick guy. Does that make sense?”
His manager nodded. “So now we know,” he said. They drove the rest of the way in relative silence. They passed through the security gate and as a courtesy he was dropped off at the door. It was 4:30. Bill was thankful and he got out with the intention of going in, grabbing his bag and calling it a day. As he nodded a thank you for the ride his manager asked,
“Where does stress fit into all of this, you know, with the kidneys?”
“I don’t think it helps, I know that much. Why?”
“Because you’re wrapped tighter than a convenience store sandwich. You try to do too much. You’re the first one in, last one out. I’m not asking for that. Take it easy on yourself. You’re getting the job done.”
“Thanks, but you might as well tell water not to be wet. It’s how I’m wired.”
“No, that’s how Superman is wired. Your name is Bill, not Clark. Smarten up.” With that, he put the car in gear and drove to his reserved spot.

A typical night at home

Bill Marshall pulled into his driveway a bit too fast. He heard the scraping of the plastic bumper as it met the small dip at the end of his driveway. It was just another moment in his 15-minute drive that he was reminded of how reckless it was for him to have driven home, half in the proverbial wrapper in a company car. A DUI wouldn’t make his life any better right now. Real smart, dumbass, he scolded himself. He put the car in park, popped an Altoid, took a deep breath, and walked to his front door. Again, he was unable to ignore the crumbling masonry adorning the walkway and the ugly door that desperately needed a coat of paint. He shook his head and went inside.

Bill took off his shoes, stumbled slightly, and went into the kitchen. His wife was sitting at the kitchen table. She didn’t even look at him. She had “the look” on her face. A sense of dread washed over him. Because he had avoided the “money talk” the other night, he knew that it was coming now. Bill reevaluated his condition and decided that he may not have drunk enough.
“You could say hi, you know. You must have heard me come in” he said.
“We need to talk” she replied.
“Not now”, Mike said with a defeated tone. “I know where this is going. Talking about it isn’t going to make a money tree grow in the back yard.” He regretted his snarky tone as it left his lips.
“If not now, when?!” she yelled. She was boiling and she wasn’t in the mood for the verbal foreplay. She wanted to fight.
“I’m doing the best I can.” He knew she didn’t believe it and he wasn’t sure if he did either. “You don’t know what it’s like out there right now.” He tried to change the subject. “Anything for dinner?”
“We went out.”
“Of course, you did. After all, why would you eat any of the food that is in our fridge, we only spend $200 a week on groceries after all.” He immediately realized that he was a raging hypocrite, he was just out himself. And she hasn’t asked where he was and why he was late. Is it possible she doesn’t care? Yeah, he didn’t want the answer to that one.
“Fuck you,” she said.
“Nice. Right back atcha. Where are the kids?”
“In their rooms doing their homework. Report cards came out today and with the exception of Britt, the boys are going to be in their rooms until the second coming. Don’t bother them.”
“If I want to say hi to my kids I will, don’t fucking tell me I can’t.” He didn’t stick around for the rebuttal. At least he had avoided the money talk again.

He needed to sit down for a minute. He would see the kids in a few. He walked into the family room, plopped down on the plush cushion of his chair, and turned the TV on. He peeled off his socks and put his feet up. His swollen ankles hurt like hell and without rolling up his pant legs he knew that his legs were swollen as well. As if he didn’t have enough shit to worry about, his disease was getting worse.
He noticed a change of light in the room and he looked to see his oldest boy D, in the doorway with a Miller Lite in his hand.
“I got you a ‘water bottle’ Dad,” he said as he tucked the can under his arm and did his famous quotation fingers.
“Don’t you have homework to finish?”
“I’m done. Did mom tell you about the report card?”
“No specifics but she didn’t paint a rosy picture.”
“It wasn’t that bad. Mine, I mean. I can’t say the same for Ry.” He sat down next to his father, handed him the beer, and said “The Sox lost.”
“Yeah, I saw.”
“Weren’t you at work?”
Bill hated lying to his son.
“Between you and me I knocked off a little early.” He and D were close. D rarely told mom much of what he said when she wasn’t around. He was a good and loyal soldier and never betrayed his dad to his mother. Bill wasn’t proud of that, he didn’t encourage it. The kid just favored his dad and somehow knew the politics of the household. Bill wished more than anything that he didn’t. But it was hard for them not to see the antagonistic relationship their parents shared.
He also wished his kids didn’t bring him alcohol and joke that they were water bottles. He was some fucking example of a father. Yet, incredible, his children loved him. Despite the fights they witnessed between him and their mother, all of the hurtful words that couldn’t be taken back, they seemed to understand him. Above all, they really appreciated him. He wished and hoped the same for his wife. He didn’t want to be the favorite parent, he would be happy as an equal partner.
He just wanted their love.

The transplant clinic

I had my monthly appointment at the Transplant clinic yesterday. I am now at 5 months tomorrow since my surgery. Just last month I was deemed fit to be seen just once a month. Given my commute time (2 hours each way) it was awful tough when I began my recovery to go there twice a week. I did that for a month. Driving 4 hours in excruciating pain was not fun. The second month I went down to once a week and then twice a month. I was pleased last month when they reduced it to monthly and I made it a point to thank my Doctor. He said, “Don’t thank me, you’re the one who is making it easy on yourself.”
“How’s that?”, I inquired.
“Because”, he said, “you are doing great, top 2% of all post-transplant patients at this stage.”
I told him that at 4 months I should think so. At that point I was back in the gym, detailing cars and working part time at another gig. Apparently, I am the exception according to my doctor who told me that, at 16 weeks most are still at the “bitching and moaning phase”, still in a lot of pain and struggling to follow instructions, and still quite in need of frequent check-ups. As imcomrehensible as that was to me, it gave me some relief to know that I was crushing it.

I looked around the waiting room as I waited to be called. I studied the patient’s in the room, optimistically looking for someone who looks like they’re doing well despite the battle they are fighting, the one I know all too well. It’s a true mixed bag of patients, both pre and post-transplant. On any given clinic day there are as many as 12 patients at a time being seen. It’s impossible to deny my people-watching inclinations and I take a lot of mental notes. What I noticed is that, with rare exceptions, the pre-transplant patients look a heluva lot rougher than I did before the surgery and the post-transplant patients, some having received their gifts many months or years before me, just don’t look very healthy. The lobby is cluttered with wheelchairs and walkers and these people look so very sick. It breaks my heart.

I can attribute my expedient return to thriving existence to a few advantages I suppose. I am a bit on the young end to have had 2 Kidney Transplants. Youth, even at 56 I am considered young, is always perceived as a benefit with regards to illness.
Another advantage is my ability to conceal my illness. Having been diagnosed at 17 I have had a lifetime to learn how to deal with this disease. If you have ever read me before, you will have no trouble understanding that “dealing with this” means that I have mastered how to not “look sick”. As soon as we had children, I became a Jedi master at hiding my symptoms. For better or for worse, it worked for me.
The last, and perhaps most important advantage is that I always prioritized my physical conditioning. Even at my sickest, during dialysis, I managed to exercise and keep my weight within range. By Range I mean the parameters set by my transplant team. If I was 40 pounds overweight when I got “the call” I would have been passed over. When I learned that, I knew that I always had to be ready to go. With both transplants, I entered the operating room at an ideal weight and in decent physical condition. Not only did I not look sick, and I was, but I also looked fit. To illustrate this point, when being prepped by the anesthesiologist, he remarked that he wasn’t expecting a guy that “looked like he could kick my ass” to be on the table. We had a good laugh. His was the last face I saw before I went under. I know I was smiling when the silly juice kicked in.
I’m on the other side now and I’m still smiling.

I wish more than anything that the other patients are able to push themselves to be the very best patient they can be. Some of them are very advanced and it is unlikely that they would be able to embark on the regimen I did. But there are also many who are just morbidly overweight and past the point that they can fix it now. Even if they know that they will likely be passed over if they didn’t. All I can point to is that I was able to do it and I’m not special. I just think ahead, and I naturally think of the worst-case scenario and I then over-think it. In this case all I thought about was being called and not being ready. That made me worry just enough to do something about it.

It gives me no joy to be at the top of the chart in recovery. That was just a plan coming together successfully. I wish that the other patients find the strength to get themselves ready when they get the call and enjoy the same gift of life that I have. I further hope that my fellow post-transplant patients have a plan to get well, to get strong and get back to living. From where I stand, and I have been there, until you commit to doing everything you are required to do with every ounce of strength in your body and mind, the thing called “good health” will continue to elude you.

At that point you are merely existing, not living.

30 days

Well, today is 30 days since my surgery. The 30 day mark is big with transplants. It is usually known at this point how well the organ is working and if it is not adjustments are made and if it is working well then they give you a little more freedom. I have been going to the hospital twice a week (2 hours each way) and have been required to monitor every drop of fluid going in and out. It isn’t difficult, just tedious. Because I’m doing so well, I am down to once a week effective immediately and today I can stop monitoring my fluid. It really is going as well as can be possibly expected. I feel good about things.

I’ve been giving a lot of thought as to the direction of my blog now. With notable exceptions I have dedicated most of my posts to illness and the obstacles associated with. I think I’ve told my story about illness, now it is time to write about the joys of being healthy. Yes, even at 30 days out I already feel healthy. My head is clear, I have energy to work out, I’m recovering some muscle and putting on a couple of pounds (I need to, dialysis robbed me of all the muscle I had) and I’m remarkable impatient to start doing the rehab work in biking, hiking, lifting and hitting the heavy bag. I’m probably already pushing it but I can’t help it. Shit to do and places to go.

This whole thing has been a blur. Despite being of clear head I still haven’t completely grasped the magnitude of my good fortune and sheer luck (or divine intervention?) and the series of cosmic alignments that allowed it to happen. The realization that I am done with dialysis is the big one. The timing of this was nothing less than amazing, I was really suffering through dialysis and it was making my life miserable. I feel like I have a whole new level of freedom. I am giddy at the thought of riding Sturgis and the Americade next year. Free to ride, free to travel and no need to find a clinic nearby. The extension cord aspect of my life is over, at least for now. The fantasy of Kerouac’ing my way across these United States is now more reality than ever. I can take the RV and just go. This is not just a pipe dream, it is something I am going to do someday. And I’m going to take my time. Dreams have now become reality.

So I was thinking about new directions for the blog. I have always wanted to write about my work history. I feel that my experiences may help someone. I also want to write about marriage and family, raising children and of course divorce. In the process of forgiving both my wife and myself and letting go of a lot of anger I feel that my experiences as a husband and father may also help or at least be of interest to someone. I don’t think I have had a great life, I certainly wouldn’t call myself successful, but I have had some interesting experiences and I have lived some funny stories. The sky really is the limit.

I look forward to sharing the other side of me, the healthy and again optimistic me. Brace yourselves, none of you have ever dealt with me when I felt good. Parental guidance suggested. You’ve been warned.

The call

I can’t believe that after all this time I may have to rename my blog. From day one Superman can’t find a phone booth has primarily been about my struggles with Chronic illness and rebuilding my life after losing everything and moving in with my mother. In the process, I told my story, made some wonderful friends, and learned the stories of others. It was very therapeutic. But now I have to shift gears because
I GOT MY KIDNEY!

A week ago Sunday my daughter came to visit. My little baby has grown up and at 19 she has a job and a decent social life. She has also been under the umbrella of a terrible depression lately. I had been looking forward to her visiting me, I was eager to have one of our heart to hearts and hoped to glean some insight as to how to help her, if possible. She arrived early morning (she likes to squeeze as much out of our visits as possible) and I made her breakfast and we chatted over coffee. She seemed to be in a good mood. That made me happy.

The morning passed without event. With the exception of the excitement of having my daughter for the weekend, I felt like I always did. Like total and complete shit. Life had been hard lately, I had to struggle to even attempt to fake the upbeat and optimistic person I always strived to be. Dialysis was kicking my ass and despite only being on it for 3 years I experienced more than my share of complications. I had been sleepless, devoid of energy and uncharacteristically void of hope. I wasn’t thinking of giving up but I was as low as I’ve ever been.

After lunch the clouds cleared. The lake effect is powerful where I am and the clouds are always there in the morning and you never really know if they are going to burn off. My daughter asked to go out in the boat. We packed and went to the Marina. Once the dog and the cooler were in and we were ready to go. I turned the key.
Nothing. Shit, the battery was dead. I had left the boat uncovered and the hold containing the battery had flooded. The automatic pump had killed the battery. My mom went to flag down a mechanic and my daughter and I stayed in the boat. We sat there waiting, made small talk and played with the dog. My phone rang, the caller ID read my Transplant team’s number.
I knew that I had an appointment coming up and I was expecting it to be a robocall confirming. I picked up and heard a human breathing on the other end. So I said “What are you guys doing working on a Sunday?”
“Well”, the woman said, I was hoping to give you a kidney today”
I almost fell off of my seat.
I repeated the sentence verbatim, not sure if I meant to but that’s what I did. I looked at my daughter and her jaw was wide open. I put it on speaker. There was a bunch of qualifying questions she had to ask. Recent hospitalizations, any open sores, dental issues, distance from hospital etc. I answered all of them satisfactorily and she told me that it was between me and one other person but the odds were enough in my favor that I should get in my car and start driving right away. The hospital is 2 hours away. We bolted for the car.

The 2 hour ride, despite my driving like a complete and total asshole, still took two hours. Traffic was not thick but it was slow. But I got there within the time frame that I told them. Nobody in the ER was expecting me. For a really good hospital, the receptionist in the ER was less than professional. You would think that the sentence “I got a call from the transplant department, they have a kidney for me” would be self-explanatory but her face was similar to mine when faced with a math problem. Blank. I lost my temper. I’m not proud of it but I did. People in the ER waiting room got it but the staff didn’t. I made it clear that if I didn’t get the kidney because they didn’t know I was there that I was going to go apeshit. A triage nurse soon came to the rescue. He knew. Whew, that part is over.

I waited over an hour before someone came out and told me that I had beat the kidney there and it wouldn’t be much longer. Soon, a team of smiling people in scrubs came out and announced that the kidney was indeed mine and that I should come on in for surgical prep. Anesthesiologists, nurses and a team of support staff greeted me at the door. They actually clapped as I was rolled down the hallway. They were great.

Finally, I was wheeled into the operating room, still conscious, where I saw my surgeon. Dr. Dailey is a giant man, six foot seven at least. His eyes smiled through his mask as he prepared the kidney. I asked to see it. He held it up, it looked like a big chicken breast complete with the fatty tissue still on it. Very cool indeed. Ten minutes later I was under.

There is so much more to tell about this. It will be at least an entire post to go over it. As a tease, let me just say that the head of my Transplant team, a highly respected Doctor known internationally for his work in Transplant Science who never indulges in anything but concrete facts told me that my odds of finding this kidney was, and I quote, “in the millions.”

Superman has found his phone booth.

to be continued…

Before it’s too late

Often when I take a break from blogging it is because I can’t think of a topic. Sometimes it’s just laziness. Sometimes I just get busy, I’m pretty active for a guy with nothing to do. Then other times I just don’t know where to start.

Last week I suffered so many slaps upside the head that I just couldn’t sort my thoughts. It started with the death of a dear friend, then another old friend of the family passed, and then to top off the shit sandwich that was my weekend I found out that my best friend in the world and his young daughter had contracted the Covid-19 virus. I was floored both metaphorically and actually. I didn’t know where to begin.

The death of my friend, a elderly Freemason whose company I have enjoyed so often and so greatly was not a shock. He was elderly and in declining health. Quarantine issues made it difficult to visit him and he wintered in Florida but I had no excuse not to talk to him more frequently and I am feeling guilt even though I don’t feel that there was anything unsaid between us. It is the worst part of losing someone, wondering if you knew where you stood with them. It is THE reason that I endeavor to always leave someone as if I will never see them again, on the level (as we Masons say) and free of anger and resentment. He was my buddy, regardless of our age difference and I feel that I am a better person for having known him. I miss him terribly.

The family friend was less of a blow. He was 92 and passed peacefully. But he meant something to me as a memory of my childhood. My parents used to Square Dance (mock away I won’t resent you) and they met many solid friendships through it via conventions at Campgrounds every Summer and retreats in Winter. I can think of 5 or 6 families that I met on those occasions and the many lasting friendships with their children that I cherish now. Frank was one of the ones that stands out in my mind the most. A father of 5 awesome kids and a all-around wonderful family man, he represents an era gone by to me. I was so upset that I wasn’t able to go to his funeral. Not being able to attend funerals is one aspect of the Pandemic that is hard to reconcile.

The news that my best friend in the world contracted Covid absolutely floored me. The news may have numbed us with all of the constant talk and actual people can fade into just statistics but by now most of us know someone who has contracted it. Sadly, many of us have lost someone to it. We always hear about those people in the high-risk category. My friend is in it. He’s a big, strong man but he’s overweight. He has a heart condition. He is always tired and his immune system is vulnerable. When I heard the news, I won’t sugarcoat it, I had some very bad thoughts about worse case scenarios. And for his daughter, whom I love like my own daughter…her diagnosis scared the ever loving shit out of me. Fast-forward to today, everyone is on the mend. That is a huge relief. But I was scared.

If you are reading this, I want you to know that I care about you and I hope you never have to endure a weekend like I had last week. Tell those close to you how you feel. Make phone calls. Send emails. Don’t put yourself in a position where you know that you could have done more. We’re social creatures and we need each other more than ever.

Where it all began

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.

Spoons

“Got any spoons in the drawer today?”
“1 or 2”, Adam sipped his Chinese Tea, his chubby face forcing a smile. “I need to be careful that I don’t use them all today.”
“Gotcha.” It was a familiar conversation between him and me. Once a month we’d get together at the Asian buffet and catch up over lunch. Each time I saw him I hoped that he would look better, but it was not to be.

Spoons? you ask? I am speaking of the “Spoon Theory”, the metaphor chronically ill people use to discuss their energy level.

  • A person has roughly the same amount of energy each day.
  • Each unit of energy is represented by a spoon.
  • Healthy people have more spoons (energy) than those with an illness that causes chronic fatigue.
  • Some activities cost more spoons than others.

To my friends with a chronic illness, you know what I’m talking about. If you don’t, then I hope you never do. Adam was all about the Spoons. If there ever was a guy that needed more, it was him.

I first saw Adam at a Masonic District meeting. He was sitting in the back corner of the room, listening intently. I was taken back by his appearance. He was very overweight, his clothes were too tight. His pantleg barely covered his absurdly swollen ankles. I was 90% sure that it was due to medications, likely steroids. I inquired about him to a fellow brother and he confirmed my suspicions.
There was a cocktail hour after the meeting and I waited patiently for a chance to introduce myself. He had a constant flow of people coming over to him and talk but I found my opening and went over to his table. sat down and said hi.
He would become one of my best friends.

Adam lived at home. 2 streets over from me. He lived with his parents after a series of heartbreaks rocked his world. A Cancer diagnosis at age 30. A recovery against a survival rate of 15% two years later. A divorce that cost him his house because his wife couldn’t handle him being sick. Visitation with his son every other weekend, which was tough for him because he hated his young son seeing how sick he was.
But he pushed on, despite the lack of spoons. He always had that smile.

In the time that I knew Adam, I learned volumes about the value of not complaining. Often, people make the mistake of greeting someone with a “how are you?”. Some people feel inclined to actually tell you, not recognizing it as a mere formality. Adam would always smile and say “good”. Even when we all knew he wasn’t. In the course of the 6 years that I knew him, he had 2 near-fatal infections, a stroke, a pacemaker installed, 2 new knees and a hip. Not to mention 2 other lengthy stays in the hospital for fatigue, one of which almost killed him. It was exhausting to be his friend because we worried about him so often. But it’s a labor I will never write off as unworthy, for he was as good a friend as any, and his ability to ask how everyone else is doing when he was clearly suffering just exemplified his kind and selfless nature. Truth be told, he didn’t like to talk about his health. Not unlike most Chronically ill people, he hated being the “sick guy” and wanted to be treated as “normal”. I’ve been there, I often longed for someone to greet me just once without saying “how are you feeling?”.
That’s why we limited most of our conversations about our respective help to spoon talk. It became our thing.

Adam never truly recovered from the Cancer. In medicine, for every action there is a reaction. For every cure, there is a side effect and a new set of symptoms. And another pill. The treatments are what ultimately killed him.
10 years after he was “cured”, he was dead. Out of spoons at 40 years young.

I miss my good friend. I miss his kindness. His self-deprecating jokes. His drive to do something, anything, every day just to feel normal inspires me. His memory serves to make me a better man, one that thinks of others before self. See, therein lies the secret and once you learn it you can’t unlearn it.

When you are thinking and acting on someone else’s needs, your own problems disappear. Even if for only a moment.

I wonder if he knows that every time I go to the drawer for a spoon, I think of him.

the Caretaker

My mom is 75. Up until this year she worked. Not because she needs to, she just likes to be busy. Working with Special Needs children here in town gave her so much satisfaction. But, with Covid being what it is, and my health (I’m in the most vulnerable category there is), she took a leave of absence.
I hate that she had to do that, knowing that she did it for me.

She has been relentlessly puttering about the house looking for something to clean. Something to sew. Projects to complete. It’s confusing to me because she has a RV ready to go in the driveway, a boyfriend that is always telling her that she should quit working (she does not need the money) and travel with him, and she has me to watch her house should she choose to go someplace.

A month in and she hasn’t spent any additional time with her boyfriend and she has made zero effort to make any plans whatsoever. The other day I asked her about it.
“What, are you trying to get rid of me?”, she asked.
I explained to her that I just want her to enjoy her retirement, to take advantage of not having financial constraints, to do all of the things that I long to but can’t due to the rigorous demands of my dialysis schedule. We talked about it and she was uncharacteristically quiet. I got frustrated and asked her why again. She spun around with a face on that I haven’t seen in years.
“Bill, do you remember what happened 2 years ago?” You would be dead right now if I hadn’t been here!” She was on the edge of tears.

There it is. The truth comes out, and an inconvenient one at that. Despite all efforts to the contrary, beneath it all I am a burden to her.

My mother is a Caretaker. She cared for both of her parents during their decline and she, with little help from the Teamsters, VA and Medicare, cared for my father as he succumbed to Parkinson’s over an eight year period. It took almost everything out of her. She put her life on hold for him. Once he passed, I had hoped that her caretaking days are over. In her eyes, clearly they are not.

I can see why she feels this way. You never stop being a parent, no matter how old your children are. I can’t imagine how she felt to come upstairs to my loft, after calling my name several times with no answer, to find me on the floor unconscious. Does it matter that I was 53 years old at the time? No, she was terrified and thought her only child was dead. It changed her, she is burdened with walking around with that image in her head. And she’s afraid that if she goes away it could happen again.

I’m smarter now about being honest about my health. I tried to assure her that I know enough to call 911 if I am in trouble. But she is standing firm. It is what I love and hate about her.

I want to be so many things in life. A burden is not one of them. I wish I could erase that whole ordeal from her mind. But I can’t. It happened and in her eyes she is permanently vigilant in the event that it will again.

I’m forever the burden, she’s forever the caretaker. That’s what being a parent is. If you do it right, it never ends no matter how old they are.