It’s a bitter cold Sunday morning here in NH and I am sitting here, coffee in hand enjoying Day one of my weekend. I am comforted by how tired I am because it is a good tired, a culmination of a whirlwind week of doing good work for good people. I feel like I made a difference this week. For me that is the best of all possible feelings.
I can honestly say that I have been on top of my game lately. I have grown into the role I’m supposed to play. I’ve overcome most of the challenges that have kept me feeling less competent than my peers; the administrative tasks (which are formidable), the organizational pieces that make my job harder such as scheduling and overall time management, and I have learned to rise to the level of my biggest foe, myself, to a point where I at last long feel like I belong. Let me drill down on that for a moment. I work in a high-pressure, high-turnover position. I have spent most of my career in such situations. One of the unfortunate realities is that people don’t accept you right away because the possibility of liking someone and investing in them and then have that person not work out is very real. In addition, I’m additionally challenging to accept because I’m awkward. Let’s call it what it is. I’m intense, hard to read at first, a little overbearing and somewhat neurotic. In short, I’m a lot. Now, the people that once cautiously said hello to me in the cafeteria are calling me to join them. People who left me out of the conversation now involve me and enlist my thoughts. My peers in my department and everyone else I interact with as we all work towards the same goal have recognized what I want to be my most visible and dominant traits: a good heart and a genuine desire to do a good job. And I think I am. I’ve built the foundation and now I’m interjecting my own style, the culmination of years of dealing with people, my own experiences, and personal battles. Pepper in what I feel is a relatable manner and some small acts or kindness and I’ve found my niche.
Last night, on the way out the door I received a call from the tearful wife of one of my clients. She was missing her husband terribly and wanted to know how he was doing. He wasn’t due for a sanctioned call to speak with her but I told her I would get a message to him. I drove to Detox, found my client, pulled him downstairs to a private room, dialed the number and gave him my phone. Ten minutes later he gave it back to me and tearfully thanked me. He didn’t have to, it’s what I try to bring to the job. Small acts of kindness are, or at least should be, part of the job description.
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.
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.
It is not only a new year but also a entirely new decade. As I mark the halfway point of my 5th decade on this glorious spinning ball we call earth I have to say that the last ten years have easily been my most tumultuous and unpredictable to date. It is said that it is better to forget the incident and focus on the lesson. I need to do just that. If I was to take anything away from the last ten years, it is that I have learned a lot of lessons.
In 2010 it was determined that I would need a Kidney Transplant. Without it, dialysis would be my only option. One that I absolutely hated. The lesson was that, despite my remarkable skills of denial and putting on a brave face, it was time to take my health seriously.
2010 also saw the culmination of multiple bad financial decisions and living beyond my means in the foreclosure on my house and a bankruptcy. Despite finally landing a great job in 2008 it was too late to stop the inevitable and my family dragged ourselves to our new home, a small 3 bedroom apt where the rent was as much as our previous mortgage and we were actually tripping over each other. The lessons were many. I learned to curb my spending. I learned to downsize. And as we banged around in close quarters I learned that the smaller the space, the closer the family and as a family we achieved some much needed closeness.
In 2011 a co-worker and friend offered to give me a kidney. Her selfless offer caused a chain reaction at my company culminating in a fundraiser for my medical expenses. I felt like the luckiest man alive and I was blessed with a huge support system. I received my transplant in December. I was grateful and empowered. The lessons were many. I learned that a blessing can come from any source and to be open to it and be grateful. I learned that people are good and plentiful. I also learned that there is a catch to everything. My GM, who coordinated the fundraiser for me was going to play that card to manipulate and attempt to compromise me for years to come.
In 2013 I lost my father to Parkinson’s. It hit me hard to say the least. I still wonder if he died knowing how much I appreciated and loved him. The lesson, and there are many, was to tell the people in my life how I feel about them. I have committed to always leave people as if I am never going to see them again. Regrets are not part of my current game plan.
2013 also was the year I joined the wonderful fraternity of Freemasonry. I found a passion to pay forward my recent gift of a Kidney Transplant and Freemasonry allowed me access to great men who do great deeds. My commitment to be a better man each day than I was before has forever changed my life. The lessons are many. Selflessness, charity without expectation of recognition, love of community and the confirmation that there are a lot of good people in the world, you just have to know where to look.
Professionally, it was a wonderful decade. In 2008 I had fallen into the job that would not only introduce me to a lifesaving donor, but I found my niche in my career. The company groomed me for a couple of years and then gave me a department to build and I can say, without hubris that I knocked it out of the park. My background and personality served me well in our business model and I became a crucial “go-to” team player valued by our customer base and a frequent resource and problem-solver. Every day was challenging and different and I found myself in a position to help people. The lessons were many, chief among them was to listen to those around you and help them whenever possible. Also, be the worker and coworker that when you take a sick day, people miss you.
I would say that 2016 was the worst year of the decade. It began when my kidney failed suddenly in February. I was floored. Upon receiving my transplant I was a new man. I began my recovery immediately and I committed myself to keeping the kidney for at least the 15 years I was told it would last. I worked out hard. I did P90X, I biked and hiked. I took care of myself and dropped weight. When it suddenly failed after only five years, I was angry like never before. Where were my 15 years? Why did I have to find out on my own that my disease was the only kidney disease to return and infect the new organ? I would later deduce the lesson. You never know what the future holds so get out there and live now. If the Dr.’s had told me that I may lose it in 5 years would I have achieved all that I had? No, if I had sat around waiting for the shoe to drop I would never have climbed those mountains and savored the view.
In 2017 the bottom really fell out. My company closed, taking my dream job with it. My health deteriorated to the point that I couldn’t keep another job. When the job was gone so was the money and that was when my marriage officially collapsed. It was inevitable, we had been strangers for years but it hurt nonetheless. I suppose you know the rest. I moved in with my mother. I applied for Social Security Disability. I was denied. I went on dialysis and I am to this day. That’s the bad.
But here’s the good. I started this blog and if you are reading right now then I made a good decision. I also focused on creating and maintaining solid relationships with my children. Today, we are strong and their love sustains me. I also committed to getting along with my ex. I have not to this day experienced the closure, the explanation for the rejection many years ago and the giant wall that formed between us but I remained friendly with her for the children, for us and for the sake of tranquility. I would like to think that I am setting a good example for the kids on how to be an adult.
2019 served as a year of tying things together and trying to formulate a plan going forward. It was a year of many setbacks and achievements. After nearly dying in September 2018 I emerged from a medically induced coma with a “bucket list” mentality. I focused more on what I could do and less on what I couldn’t and in the process found that I could do a lot of things my detractors said I couldn’t. One of them was buying a motorcycle. Everyone said no, as had my wife and family for many years. But it was in my blood and as an homage to my father I was on two wheels again. The freedom and love of the open road has changed my life and, second to my children, is a thing that keeps me going on those dark sleepless nights when the pain is so bad that I consider the darkest of thoughts…ending it.
My greatest achievements of the 2019 was the transformation of my entire attitude. I like who I am. Finally.
It is true that a man has to hit rock bottom, with nowhere to look and go but up, before he truly discovers what is truly important. Brutal self-examination led to self-improvement. Physical challenges awakened the fighter in me. Having nothing to lose empowered me to rise from the ashes and shine my light instead of lurking in the shadows. It was then the lessons became clear.
For every high there is a low. People do not suck. Life is to be lived not viewed out a window from a recliner. The words “no” and “can’t” are to be treated as a personal challenge. Sometimes we all need help and that’s when we discover who our friends are. Pain is temporary while regret is forever. Be charitable to a flaw with your time if not your wallet. Only look down on a man if you are helping him up. Be nice. If you can’t do that then be quiet. Don’t ever let someone tell you what you can’t do. Make every day count as if it were your last.
In closing, I hope to be around long enough to do another one of these ten years from now.
As I stated in the last installment, my Grandparents’ marriage was not without tragedy.
In 1948, on a typical late fall afternoon, my Grandmother had just finished making dinner. A fresh pot of coffee was percolating in the kitchen and my Grandmother had just asked Charles to run into the living room and tell my Grandfather that dinner was ready. The distance from the kitchen to the living room was not even 15 feet but Grandpa’s game was to ignore her until she yelled then he would come into the kitchen with a big smirk on his face. Marion didn’t want to deal with the game. Charles did as he was told, and dutifully ran down the short corridor to call his dad. As he did, he accidentally tripped the power cord to the ancient coffeemaker. As if in slow motion, my Grandmother watched helplessly as the pot tipped and the scalding hot coffee poured down his back. He screamed, immediately went into shock and was dead moments later. My mother tells me that a team of doctors, with today’s technology, could not have saved him. My grandparents were completely crushed. My grandfather would retreat into himself, my grandmother would deal by completely, and I say this without exaggeration, smothering my mother, her only remaining child.
Not the grieving types, life went on. The UK in them sustained them. Grandpa was from Scotland, Grandma was from England, they were built of sturdy stock. My grandfather found work as an Oil Burner repairman and worked several side jobs. My grandmother busied herself immersing herself in her daughter’s life. She would find fault, in as matronly a manner as possible, with her friends, their parents, their houses, and their clothes. No one or nothing was good enough for her daughter. It wasn’t snobbery, although it looked an awful lot like it, it was merely overprotection. My mother somehow managed to maintain a small circle of friends, she simply coached them to look past the interrogations and disapproving looks and see the nice, battle-worn woman within. She managed to have a fairly normal childhood. At least for a while.
As it would turn out, tragedy would unfold again. After going upstairs during her 7th birthday party because she didn’t feel well, my mother would be found unconscious in her room. The diagnosis would be Viral Spinal Meningitis. In 1952, this disease had no cure. She would languish in a coma for a week until a young doctor approached Mel and Marion with a glimmer of hope. He told them of an experimental serum that had shown promise but was not approved by the government yet. With little to nothing to lose. they agreed to try it. It would save her life. It would take a year of recovery, including learning how to walk again, but my mother made a full recovery. I only wish the same could be said about Marion. The smothering would escalate to epic proportions.
The windshield wipers keep rhythm as I adjust my seat forward to make sure I stay awake for the drive home. The heater is on high and I’m still cold. The hot coffee in the holder next to me is calling my name but I’m fixated on the double yellow line, all senses working overtime to get home safe.
This is just one more in a series of post-hospital visit rides home. I’ve done so many that they have become a ritual. I review in my head the events of my stay, even those leading up to it, evaluate how productive it was and ponder the next step. This ride is unlike the others, I am not as optimistic about a positive outcome as usual. In fact, I have a very confident feeling that I will be back in the hospital soon. I’m not being negative, I’m just being honest with myself.
Like the yellow line in the road, the events of the past few days are a blur. Thursday morning I drove to a follow-up appointment for my ongoing pneumonia. To say that I felt like crap is a huge understatement. I arrived 20 minutes early and it took me 15 of them to muster the courage to walk a hundred yards to the front door of the medical building. The heat emanating from the vents in my truck was warming and sedating me, the thought of walking through the freezing rain that was hiding my Spring seemed a daunting task. I finally got out of my truck and made the walk. By the time I got to the front door, I was done, bent over and gasping for air. People were staring. I walked slowly to the elevator and tried to compose myself.
I checked in and waited patiently to be seen. I wouldn’t be seen for 20 minutes but it didn’t matter, I fell asleep in the waiting room. When my doctor came out to greet me, a mere ten minutes elapsed before an ambulance was called to move me to the nearest hospital. 2 hours later Dr. Quackadoodle MD decided that because my vitals were ok he would ignore all of my Dr.’s notes and send me home as healthy. Discouraged but not surprised, I have always been a medical enigma, I prepared myself to go home. Then a cute as hell nurse came in and said she was moving me to X-ray. I wasn’t sure what had changed but I went with it. Once my X-Ray was reviewed Dr. Quackadoodle MD decided that I would be admitted. Pneumonia in both lungs. Duh, What do these people think, that I’m here for fun?
The next 4 days would consist of what has become a familiar pattern. I was told about my declining kidney function. No shit… read my chart. I would answer the same questions about my medical history over and over again. Once again read my fucking chart. I would talk to sub-par doctors who knew less about my condition than I did. My repeated requests for them to consult with my Transplant team would go largely unheeded. After several days of antibiotics, surprisingly good hospital food, too many naps and far too much television Monday rolled around. I asked my nurse on her morning rounds what progress I had made and to speak with the doctor on duty. I wanted to know what the plan was. Five minutes later, she relayed to me the doctor’s words…”Do you feel well enough to go home?” What kind of bullshit answer is that?! I wanted to discuss blood counts, creatine levels, a second chest X-Ray to see if there has been a change…not assess myself! No, I don’t feel that much better. Walking back to bed after taking a leak has me sucking wind, that is not progress. It was explained to me that my blood counts had improved and that pneumonia has no real treatment regimen except rest and antibiotics which can be accomplished at home. Good enough I guess, get me the discharge papers.
My takeaways of the visit flash in my mind like the lights of the passing cars.
I’ll probably be back in the hospital soon. Brace yourself.
I received some amazing care from the nursing staff. While I wasn’t thrilled with the doctors, the nurses and aides were great. Caring, nurturing, and professional as well as sounding boards for my lame Dad jokes, they made my stay easier.
I am grateful that my oldest daughter drove 50 miles and picked up my youngest daughter to come see me. Their support was much needed and appreciated.
I am a little perplexed that my youngest son didn’t even text me. Perhaps my years of trying not to worry them have succeeded with him, I’m not sure how I feel about that.
It was the first time my wife wasn’t bedside arguing with my doctors. She was working doubles all week and she’s now my ex-wife. Things have indeed changed.
I arrived home around 7:30 and hopped in the shower to wash the hospital off of me. The activity and steam winded me to the point that I had a coughing fit so violent I vomited in the shower. Hanging my head in the shower, as I hung my head in the ER so many days ago, the only words I heard were those of Dr. Quackadoodle, of the distinguished medical practice Dewey, Not listen, and Howe saying “Do you feel well enough to go home?” reverberating in my head. Yea, sure. I really wish I had handled that better. I suppose I can address it the next time I’m there. The way I’m going how long can that possibly be?
I’m not feeling bad for myself, I’m just feeling bad. This won’t last, I will feel better at some point, I have to. My posts will be more positive, I promise. This is my process, put it to paper and then put it in the past. Soon, if it is meant to be, the good days will again outnumber the bad.
Superman found his phone booth 