A year has passed…cont’d

September 28, 2018.
I awoke in a trauma center room full of beeping machines, staring and inquisitive medical staff, lots of plastic curtains and my ex-wife, oldest daughter and my mother.

You can catch up here.

“Where are the 2 fat firefighters?” I asked.

“Oh, he’s fine” she said. She then began to laugh, if you could call it that. A nervous laugh of relief if anything. My wife had buried her face in her hands.

Very confused and in a bit of a haze, I asked why they reacted as they did. As it turns out, the Dr. had just cautioned them that when I awoke there was a distinct possibility that I could suffer some type of cognitive loss. My first words after being medically sedated for 2 days being a joke, they were convinced that I was ok.

But of course I wasn’t.

It took me a while to piece together the events of the previous 3 days. I had no recollection of them so I had to rely on accounts from my mother and my medical team. Both were being light on details and, even in my foggy state I knew that it wasn’t good. Initially, all I was able to learn was that I was rushed to a local hospital that was ill-equipped to treat me and sent me away after dousing me in ice to lower my fever. Which, by the way, was measured at 104.9, a fever that a man my age rarely survives. I was then taken 65 miles away to a hospital with a Trauma center and immediately heavily sedated as they worked to control the septic infection ravaging my body. I was sedated for 2 full days. At one point my mother was asked if I had a Medical Proxy and a Advanced Directive, AKA a DNR (Do not resuscitate.

My Dr. confirmed and explained Sepsis to me and the reasons for Sedating me for 2 days. Apparently I was extremely fitful as I was being treated and I kept tearing the breathing tube out (that was the first time I realized I had had a breathing tube). He was very focused on my treatment regimen going forward. My mother was light on details, she was very upset by the ordeal. It wasn’t until I spoke to the Night Nurse, a real good guy that worked every night that I was in ICU. I explained to him my need for info and my confusion about what had happened to me. He took off his glasses and sat down next to me.
“A guy doesn’t get any closer to the other side than you did. We’re all amazed at your recovery. We thought we lost you.”
“Really?” I asked incredulously.
“Yes, if I wasn’t a religious man before I would be now.” He paused. “It was that close.”
I could do nothing but stare at the white ceiling.
“And you’re not out of the woods yet.”

What followed was a full week of restricted bed rest. I was severely limited in how much I could move because I had a temporary dialysis port put in my hip that was in danger of rupturing causing me to bleed out. For 4 long days they ran every antibiotic known to mankind through me until my fever stopped spiking. By Sunday I was able to be moved to a regular room.

I wasn’t out of the woods yet. The infection wasn’t done yet. I had several relapses plagued by sweating spells and rampant chills in no particular order. I wasn’t able to eat much. I was still forced to stay prone in bed, it would be 2 days before I could even sit up. I was in a private room but there was nothing private about it, nurses and teams of doctors were in there constantly monitoring my every function. My only reprieves, as it were, were my dialysis sessions upstairs.

Eventually I did stabilize, much of it was a blur. I did have plenty of time to get to know the nurses as I recovered. In addition to their youth and attractiveness they were very friendly and good at their jobs. I struck a rapport with a few, one in particular couldn’t get enough of my jokes and my story. She came in every time she had a minute and asked me more questions about my Chronic illness journey. Her name was Olivia.

On day 9 Olivia came in with the physical therapy team. They were tasked with getting me to walk. I had been bed-ridden for 8 days and it was amazing how atrophied my muscles were. 3 nurses got me to the hallway with the goal of walking to the end and back. I was only able to support myself for 3 steps and I collapsed. I would try 2 more times that day and I fared only slightly better then. I was returned to bed. Olivia told me that they wouldn’t consider letting me leave, fever vanquished or not, until I could walk.

By the end of that night I was able to walk the hallway end to end twice before collapsing into bed again.

to be continued

Perception vs. Reality — MSich Chronicles

Have you met Steve? If not, you should. I challenge you to read this post and not “follow” him. This is the attitude that we all need to have, one that those with chronic illness can teach all of us if we open ourselves to it. It will definitely influence the way you look at others when you pass them on the street.

 

“I wonder what people think when they see me.” That was a common refrain of mine once the symptoms became entrenched and my mobility became compromised. I was never one who liked to stand out in a crowd, preferring instead to blend into the background. MS made that impossible. My inability to walk in a straight […]

via Perception vs. Reality — MSich Chronicles

Someday

It’s a tired bit from movies and sitcoms.

Someone, when faced with losing a friend to marriage, or moving, or some other life-changing event says something to try to make them change their mind.
“But what about our plans to hike the Appalachian Trail?”
“Who will I travel Europe with?”
“We were going to make that movie.”
The response would be, to great audience applause, “Dude, we have literally never done any of those things.”

I always got a warm and fuzzy out of those gags because there is some truth to them. We do often envision ourselves doing something different, something exciting, something completely out of our comfort zone. Some are goals, others pure fantasy and others are doable, if one is able to overcome the logistic or emotional challenges that hold us back. Logistical challenges such as being employed, married with children could make hiking the Appalachian a challenge. Emotional challenges such as fear of flying make traveling Europe unlikely. Then there is the fear of change, a likely crippling yet common emotional challenge.

I have indulged in such yearnings myself but I failed to capitalize on the opportunities provided by youth of being free and unencumbered and able to go and do anything anywhere. Elements of my life always forced me to push those yearnings to the back burner. I worked and made money but I didn’t save any. I lived on what I made and before I knew it I was living to work and not working to live. Unfortunately, that never changed. Still, I had things that I wanted to do someday.

“Someday” is a wonderful notion. It is the carrot at the end of the stick. The mechanical rabbit at the dog track. It is the want of future “stuff” and “experiences” at a time when we have all of our shit together, are financially secure, and emotionally and physically able to do the “want-to’s” that call to us through open windows as we toil through the “have-to’s” of life. As we age, or sink further into the harsh requirements of survival they seem farther from our reach. Many, through planning, good decisions or good fortune reach that point. They successfully raise their kids, manage their careers and finances and eventually buy the boat, RV or Beach House, travel to Europe or spend the winter in Florida. I applaud them. They recognized, worked towards and then achieved their someday.

That’s not me. Still, the “somedays” call to me. They beckon to me to drop everything and just go. To shake it up. To jump out of that plane, run with the bulls, to get the adrenaline pounding through my tired veins again. My reality rejects them.
“Sorry, I’m just too tired.”

Fortunately I am a simple man that has never assumed or envied wealth. If you were to ask anyone who has talked with me over drinks about this and they will tell you that if I had a Billion dollars, I wouldn’t be much different than I am now. I wish for enough of basic things. Enough money. Enough food. Enough enjoyment and satiation. Rich enough to not worry when my oil light comes on. If I were to indulge in extravagance, I would want a small house on the lake, a new truck every 2 years, a snowmobile and 2 spaces in the garage for a rotating stock of American muscle cars. I would still wear jeans and flannel shirts.

I am now single and no longer working. My children are grown. All of the logistical challenges with the exception of financial have been removed. I may have only enough in the bank to travel to the end of my driveway but I am able to attempt some modest adventures. This should be a very encouraging time for me to chase a few “somedays”. Unfortunately, in the place of the aforementioned removed obstacles, the specter of illness has clouded my horizons. It has rendered me weak and requires me to be close to home. My somedays, despite their simplicity in scope and cost are very far out of reach. In short, my simple dreams went from Goal, to Unlikely, to the morbid status of Bucket list, the status that implicitly denotes an urgency to do certain things before you die.
Fortunately, I do not fear death. I have faced it several times and have handily beaten the bastard each time. What I fear is a life unlived. If given the gift of clarity when I take my final breath, I hope to look back at the film reel (gag reel?) of my life and see that I left it all on the table. Then I will die happy. I will hopefully be remembered as someone who left an impact on those that that I met.

I have accepted the fact that I am not going to live a long life. Reconciling with my mortality has been liberating and I am thankful for the lessons it has taught me. I learned to tell people how I feel about them today, I don’t want to talk to an unresponsive slab of granite later on. I try to be honest, grateful and kind to my fellow man because all of these traits are vanishing from society at an alarming rate. Finally, I learned to live for today.

Yesterday is gone, today is almost over, and tomorrow is not guaranteed. My “someday” is not as far off as it is for others. Each day is a gift, that’s why it’s called the Present.

the 2 fat Firefighters

3 AM on a Monday. I awoke to the most intense cold I’d ever experienced. I was shaking violently, uncontrollably. My teeth were chattering so badly I feared I would break a tooth. I was on the couch where I had fallen asleep watching the game. I frantically grabbed for my blanket. Covering myself, I begged aloud for it to stop. It was no relief. I somehow mustered the strength to get up and trudge up the stairs, hoping my bed would provide some relief.
I was beyond cold, I was scared.
I crawled into bed and wrapped myself in the blankets, everything had to be covered down to the last toe. The trembling continued for what seemed an eternity. I had never experienced anything like it. Finally, it stopped.

Cold. So cold. The thought of a finger or a toe escaping my cocoon absolutely terrified me. I knew this wasn’t normal, something was terribly wrong with me. I needed to yell out to my mother downstairs; I needed to reach for my phone to dial 911. I needed to do something. But I didn’t. It was just too overwhelming and so very, very cold.
You may die, a voice in my head persisted.
“I don’t care”, I fired back.

___________________________________________________________________________________________

“Bill, you need to wake up! You’re going to b e late for dialysis!” my mother said in an elevated, scared voice. I faintly recall her doing this several times. I vaguely remember sitting up once in bed, when my blanket fell off I grabbed it and fell back into bed. The next thing I remember was 2 heavy Firefighters carrying me downstairs.

The next thing I would remember was waking up in the ICU. Struggling to focus through the bright lights, I saw several nurses bustling about the room and my mother and ex-wife in the back, chins on hands.
“Where are the 2 fat Firemen?” I croaked.
My Mother joyfully exclaimed to my wife “Yup, he’s fine.”

In the 6 days I spent in ICU and the 5 spent on the Cardiac floor I had plenty of time to gather the pieces. I was haunted by the grim faces of my family, by the cautious explanations of the medical team. I had a feeling that I had been to the 9th gate of Hell and no-one was telling me how bad it really was. I knew that I had lost 2 full days and I wanted answers. Fortunately, my ex-wife stepped up to the plate.

I had gotten an infection in the dialysis port in my chest.
I had gone on 2 ambulance rides. One to the local, useless hospital that was unequipped to treat me. They iced me down to control my 104.9 degree fever and shipped me 60 miles to a better hospital. I don’t remember one second of those rides.
I had been sedated with a breathing tube and catheter as antibiotics were pumped through me.
The port in my chest had been surgically removed and I had been given dialysis through a temporary access in my groin. You would think I would remember that.
At one point I tried to rip my breathing tube out of my throat. It took a team of very strong nurses to restrain and sedate me. I did this in front of my entire family.
My wife was preparing to tell my children that I was gone. My DNR had been discussed. It was that close.
I had Sepsis, at a 104.9 fever a man my age has a high risk of brain damage. When I asked where the 2 fat Firefighters were, I had proved that I was indeed fine.
Last, and perhaps most significant, and I say this without drama…I almost died.

In my 11 day stay, I was haunted by the unknowns. When my ex filled me in on all of the unpleasant details I had more questions than answers. Sure, the doctors told me the essentials, but I’m thankful for family for telling me the truth and for their support.

____________________________________________________________________________________________
Once I was alert I began my recovery. It’s what I do. The doctor’s were astounded at how fast I bounced back. I don’t know what the expected recovery time is, but I beat it in street shoes. After 8 days in bed, I was told that I would be working with Physical Therapy to see if I needed to go to a Rehabilitation center.

The next morning I was asked to get out of bed and try to walk. It was amazing the amount of strength it took just to sit up. I was in a complete state of Atrophy. With the assistance of 2 therapists, I attempted to walk the hallway. I was weak, dizzy, unable to support my own weight. I made it 6 steps before needing a wheelchair. It is astounding how much strength I lost by being bed-ridden.
I was told that my going home was contingent upon my physical strength and ability to walk out of there.
By the end of the day I was able to walk the hallway 6 times unassisted. The PT Therapists were floored. I was sent home 2 days later.

I have been home for a week. Recovery is slow. I’m weak and still haunted by how close I came to a dirt nap and by the unknowns. I have no memory of almost 3 days and it bothers me deeply. However, nothing bothers me more than being visited by my Mom’s best friend, who was at the hospital with my Mom when I was admitted. Her first words to me were,
“I have to tell you, I never thought I’d see you again.”

Yeah, that’s not something you hear often. Nor do you want to.

 

 

a good week

I have to say, it’s been a good week. Other than a killer case of gout and dry-eye, which is essentially a bloody eyeball with a centralized headache behind it that makes focusing unbearable, things have been good.

Dialysis, I am happy to say, has made me feel a lot better. Some may complain about it and feel bad for themselves but I am here to say that I feel better than I have in months. So much so that I stepped forward to help out at the local Community Club meeting. I helped, alongside 7 other awesome people, prepare a meal for 86 people and then had enough energy to serve, clean tables and wash dishes after. While I admit that I was hurtin’ for certain by the end of it, I know that I could not have done half of that even a month ago.

My Social Security Disability came through this week. I have been waiting a long time and it has never been a guarantee. I was very disheartened when I was denied in December. I was very encouraged when I had my appeal this past August but still, I was not certain about being approved and even if I was, how far back would it go. It worked out perfectly for me, I will be getting a retroactive settlement from October of 2016. Over $30,000 to soften the blow. I will give my family half of it and that should set them up pretty good. I will pay back my mother and catch up on everything I have put off for the last 18 months. In the Spring I will buy a used motorcycle.

My friend Steve, who I wrote about last week must have been blessed by all of you that wished him well. After several years of waiting by the phone for MA General to call him, driving in to be tested against a cadaver because there was a fatality that may be a match for him, he got the call on Wednesday. This one was a match and he got a new liver. He is recovering nicely now. I am absolutely thrilled for him. As the saying goes, it couldn’t happen to a nicer guy. He’s a good man and a great friend.

Well, that’s it. Superman is back to his old self (for the most part). My strength is coming back, my sense of humor has caused people to say “you’re like the old you!” and I’m even losing a couple of chins in the process of dialysis.

I’m going to enjoy the day because this is a good one. I’m going to run with it because, after all, who knows what tomorrow will bring right?

Why me? Why NOT me?

“Listen carefully, Billy”, my Grandfather said. He looked me straight in the eye.
I cried because I had no shoes. Then I met a man who had no feet.”
“What does that mean Grandpa?”
“It means, Billy, that you should never complain because there is always someone who has it worse than you. Be happy with what you have.”

I was a young boy when he said that to me. I don’t remember what I was complaining about but after that exchange I learned that men, men like my Grandfather, don’t complain.

Have I complained since then? Of course, it happens. But my brain immediately flashes back to that quote. And shuts me down. It has served me well, in fact it was one of my greatest life lessons and shaped who I am today.

People often told me during the height of my Illness that my positive attitude, and crippling denial, inspired them. I wasn’t waking up with the intention of inspiring others, I was just listening to my Grandpa. I was keeping my kids from worrying about me. I didn’t want to burden anyone.

People tell me now that my jokes and overall positive attitude about my current situation helps them. How else am I supposed to be? Should I complain? It’s not my style. It’s not becoming of a man. And nobody wants to hear it.

Why?

Because someone always has it worse. I know it. I’ve seen it.
I have friends who have lost children at the toddler stage to cancer.
I’ve been to Children’s hospital in Boston and read books to children who would never leave that hospital.
There are families everywhere dealing with dead children, wounded Veterans, mental illness, MIA’s and POW’s, gun violence, terminal illness, no Health Insurance, pending bankruptcies, the list just goes on and on.
They all have it worse than I do.
Most of them wish they, or those that they lost, were only on dialysis.

I’m strapped to a dialysis machine 3 days a week. So what? I’m alive. It may kill me, and then again, I may get a donor. It could be always be worse. One thing I have learned in my 53 years of walking this green earth is that I’m not special, I’m just a cog in a great big wheel. I never say Why me?
Why not me?

I have always said that where I am is where I am suppose to be. That applied wherever I was. Why isn’t it feasible that I am right where I am supposed to be doing what I am supposed to do at this moment?

I was given a brutal reminder of this tonight when I got a call from my friend Steve. I met Steve when I lived in an apartment complex as my family tried to bounce back from the foreclosure. We were instant friends. We hung out often and had a lot in common, in particular crumbling marriages and the love of our children. When he got divorced and moved, we stayed in touch.

Steve became very ill after he moved. His diabetes, once under control, had destroyed his liver. He needed a transplant. When I had mine, he was the first friend to visit. He had questions of course, but he was there as a friend.

Flash forward a few years. Steve was deteriorating. It was affecting his job as a Teacher. He was missing work and couldn’t find a balance in his meds, the side effects were destroying him. Soon after, a group of Teachers that praised him to his face went on to stab him in the back. He was forced to defend his ability to enlighten young minds to a committee of people who wanted him gone. After suing the Teacher’s Union he claimed a meager, insulting settlement and he walked away with his dignity in his pocket. No accolades or thanks for his 20 years of service or retirement party.

Steve lost most of his friends. Or they lost him. He is now pending disability. He just sold his car because he can’t make payments. His ex-wife is taking him to court over child-support he can’t pay. She knows he’s trying without income but wants to punish him. He can barely talk, an hour after he takes his meds he loses control of his voice. He is on a list for a cadaver transplant, it’s his only hope. Unlike a kidney, a Liver cannot be given by the living.

Tonight, I asked if he would drive up and spend a couple of days with me. He can’t because he has to be nearby in case there is a fatal car accident that will produce a proper tissue match. Plus, he has court tomorrow because his ex-wife is not done ripping his testicles from his scrotum.

Steve would love to be me. Right now, I love being me. I have friends and family who support me. My wife acted with dignity and compassion in our divorce. My children love me and will never be a pawn in a big game. I won’t die if I don’t get an organ donation in the next few months.

I worry about Steve right now, he has been a good and loyal friend. I am not worried about me right now at all.
Why?
As sick as he is, he was the one to call me to see how I was doing. How about that?

Were you to ever utter the words “what else can go wrong?” the universe very well may take it as a challenge.

My special purpose

On Thursday I entered the dialysis clinic with my bag containing a blanket, books, my laptop, headphones and half of the trepidation I had felt on my first visit. I was greeted by an entirely different Nursing Staff, which gave me the opportunity to drop my “oil change” joke 💀. It was fairly well received. I’m going to ask for a tire rotation next time to test the waters.

I already know the routine. I weighed in and sat down while 2 nurses, 2 potentially new sounding boards for my repertoire of Dad jokes, went through an impressive routine of programming the machine and unwrapping needles and fastening clamps and god knows what else. It really is something to watch, it must have taken a hell of a lot of training. When they were done and I was hooked up, they went on to other patients and I settled in for 3 boring hours.

I wasn’t in the mood for TV and not ready to read so I looked around the room. There are 12 stations in the room and every chair was full. I recognized most of the patients in the room from my first visit. The staff was all new to me. In particular I noticed a thin, older woman with a buzz cut making the rounds of the patients. I figured her to be the Nurse Manager. She was making her way towards me. After spending a few minutes with the gentleman next to me she came over and introduced herself as Kim, the clinic’s Social Worker. She knew who I was, had researched my case and apparently was looking forward to meeting me. Part of me wishes I could say the same. I respect social workers and what they do, but their goal is to get me talking about myself and my condition and how it has affected me and everything else that I don’t want to talk about. I deal well by not talking about “it”. Social workers chew away at my armor.

Kim sat down next to me and asked me a few questions about my overall reaction to the dialysis process, was I feeling better? Did I have any issues or complaints? Standard stuff. I immediately found her east to talk to. I had been anticipating an interview and instead found myself in a conversation. I certainly had time so I decided to drop my guard a bit and see where it goes.

The questions flowed easily from her and although it was standard fare; how long have I been sick; my marital status and my living situation. I answered all of them honestly and in some detail. She was taken back by my story, especially at the saga of my marriage collapsing. She kept asking, in different ways, if there was a chance at reconciliation and I continued to say no. She was surprised at my acceptance of the situation but dropped the subject. She then asked me if I was working, would I be able to or plan to in the future. I explained my situation with SSDI and that seemed to satisfy her. She then asked me what I used to do for work.

I found myself telling her all about my most recent position at the finance company and of all of the things I loved about it. I don’t know how long I spoke of it but when I was done and looked at her she looked captivated.
“If you could see the look in your eyes as you talk about that job” she said.
I had actually teared up as I had told her my tale.
“It meant a lot to me, Kim. You will never hear me utter a word of hubris, but when it came to that job I was damn good at it. I miss it.”
“I can tell.”

The conversation eventually wound down and she moved on to another patient. The emotional reaction to talking of my career lingered on. I explored it deeper and had an epiphany of sorts. Of all of the things I hate about my current situation is that I am no longer needed by people in my life. My family no longer seeks or expects support from me. I no longer go to work each day and try, in some small way. to make a difference in someone’s life. See, I had no throttle control before this happened. I was “all in” on life with family and career. I was active as possible as a parent and a husband, Teaching, mentoring and loving my kids while giving what remained of my ass to my job was what I lived for. I was a doer, a guy that made shit happen. A guy people came to. I was a great father, husband, friend and co-worker. I rode bikes and walked miles in the name of charity. I donated money I didn’t have and didn’t care.

Now I have none of it. Maybe the pace proved too much for my body.

I have beaten to death my family life on this blog and it is well documented that I love my family with all of my earthly strength. But I haven’t discussed work often and it was a big part of who I was. Men have often been accused of strongly tying their self-worth to their profession. I was guilty of this. I vowed never to be the guy who called in sick and no one noticed. My job, to quote Steve Martin in ” The Jerk”, I had found my special purpose.

The days when people came to me for advice; when calls were transferred to me because no one else knew enough or how to talk to an irate customer; having the owner boast that you are the “best in the business”; being given a seemingly impossible situation and finding a way to fix it. I have such fond memories of talking to people where the conversation started as a confrontation and ended with a “thank you.” It wasn’t that I was particularly skilled at everything, I just knew how to talk to people and I really, genuinely cared about them. I was proud to go home many days of the week with the knowledge that I actually may have helped someone through a tough day. I don’t have that anymore.

I have tried to be as useful as possible since the collapse. I volunteer at the food bank, I help some of the older people in town with basic chores. I don’t charge them, they don’t have the money. I am kind to my fellow man and I put out zero negative energy into the universe. I hope to become healthy enough to volunteer at a camp for the families of terminally ill children next summer. I am being the best person I can be.

But I don’t feel needed. I can’t believe how much I miss that feeling.