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.

Let’s hit the course… a Mike Valentine tale

this is a continuation of a post from last week. You can catch up here.

His brief moment of warmth towards Tracey over with, Mike Valentine vividly recalled how much she had fought him when he was hired. Tracey thought that she should be Sales Manager and for a while refused to even come into his office. She thought it should be hers. Little did she know that he was partially hired to “reign her in” and “get rid of her cleanly” if possible. It needed to be done. She had a well documented history of insubordination and she was so disliked by staff and customers alike that other auctions would thank Mike for having her, that she was driving business to them. Mike never lost sight of that when dealing with her. She was either going to get in step with his way, or she would be gone. Two years had already passed and he was no closer to getting rid of her than he was but he had some great success in curbing some of her bad habits.

Dismissing her from his mind, he again focused on his emails and his upcoming day. He heard the door of the office next to him bang and he realized that Bob was in. He grabbed the flyer for the golf tournament and went in to say good morning. With very little convincing, Mike left the office with a check request for 500.00 to buy a foursome and a list of potential dealers to invite. He had to move. The tournament was in 2 weeks. He had to make some calls. It took all of one hour to secure the foursome. He invited one active dealer rep and his owner, as an award for regular business. He then invited a dealer whose business he had been trying to secure for some time.

Mike was excited for the first time in what seemed forever. Golf tournaments were the biggest perk in sales while also serving as the ultimate means of securing clients. Mike constantly battled ringing phones and interrupting employees are the worst when visiting customers. On the golf course you have between 6 and 8 hours, depending on the size of the tournament, and you have their full attention for the entire time. Plus, and perhaps most importantly, it was a day off from work with pay and an expense account. As he walked back to his office he felt a spring in his step.

For the next 2 hours Mike finished his morning routine. He called his reps, discussed their game plans for the day, offered advice or suggestions as needed, asked if assistance was needed with any customers and generally made it known that he was paying attention. When he was satisfied that the reps were on the right track he finished his emails and prepared for the 11 AM Managers meeting.

Preparation was ingrained in Mike Valentine’s DNA. It wasn’t enough for him to know what was going on. He insisted on being prepared for any question, no matter how far out of left field it may come from. His manager had come to expect this from him, his memory of tiny yet important details had earned him the affectionate moniker of “Rain Man”, after the iconic 80’s movie. It was difficult to maintain this level of attention to detail but it was what, as his father always preached, “makes one man stand out more than another.” His dad didn’t say that as a statement of exceptionalism towards his boy, but instead to reinforce his belief that a man’s achievements in life define him.

At 10:55 Mike, feeling accomplished and prepared, folded up his manifold and made his way through the office to the stairs. As he started the ascent he felt winded after only a few steps. He paused, tried to catch his breath and not convey his condition to the coworkers walking by him on the stairs. He looked at his phone to pretend that he was reading an email while he caught his breath. Was he hung over? Was he dehydrated? Was he just out of shape? These questions danced through his head as he regained his breath. He finished the flight of stairs, paused outside of the already full conference room and waited until he wasn’t puffing before he went inside. When he walked in his GM sarcastically thanked him for joining the party. His co-managers snickered in unison.

The meeting consisted of Mike the GM, Bob the AGM, Mike, the Fleet lease manager, Office manager, Reconditioning shop manager and the Body Shop manager. Mike was in a decent mood and the meeting was smooth if not boring. Mike had little patience for the details of the margins, collection policy changes and oversight matters. He only cared if they were bringing in, and selling more cars than they were 1 year ago at that time. That was his job. Volume. But he listened along and chimed in when asked for his input.
He didn’t feel well and he feared that his face was showing it.
As the meeting turned to the Office Manager on his right, Mike was suddenly overcome by a sharp, stabbing pain in his left side. It hurt so instantly and intensely that Mike yelped loudly in pain. Not wanting to make a scene, he struggled to get up from his chair and make his way to the door. Two feet before he reached the door, his co-workers bleating at him as the waves of pain tore through him, Mike Valentine collapsed on the floor of the conference room.

More later…

My week thus far…

Friday I received a call from my new Nephrologist. He had spoken to my Transplant team and it was decided that dialysis was needed immediately, despite the fact that the fistula I had recently had installed was not mature yet. He had made arrangements for me to report to a local hospital on Monday morning at 10 to have a temporary “port” installed. It was also scheduled that I would have my first dialysis treatment the next day. They clearly weren’t playing around.

I spent the weekend in a bit of a funk. Despite knowing that dialysis was inevitable, I still dreaded it. Despite all accounts that it would make me feel better, I had this horrible picture in my head of what it would be like. I was also dreading the surgery.

I reported at 9:45 to registration and was immediately led by the charming and matronly Alicia to the surgical prep area. I dutifully removed my clothes and signed all of the paperwork that I commonly refer to as the “I will not sue your ass if you fuck me up on the table” forms. Alicia was great, very comforting as she explained the process to me. It sounded rather unpleasant but hell, I would be knocked out, right?
“So, who is driving you home?” Alicia asked me.
“Ummmm….I am.”
“Oh dear.” Alicia replied.
“Oh dear, what?” I asked incredulously.
“If you drive yourself home after anesthesia you will be driving under the influence of a narcotic. Your surgery will have to be done with a local only.”
“When I talked to Doc on Friday he gave me the choice of driving myself or getting a ride. Not to be a bother I didn’t ask my mother. The info you just gave me would have been helpful.”
“Sorry, hun.”

I was wheeled into the Surgical room. I was injected with a local and a numbing agent. A tent was put over my face and I was told to lean my head as far to the left as possible. I was then told to relax. Yeah, right. My surgeon then, with the assistance of a radiologist, snaked a tube through my neck, into a major vein stemming from my heart and then pulled it back out my chest. A tube was then attached to my chest. It’s there until my fistula is ready. I felt everything. I can only describe it as having a giant fish hook inserted into my neck and pulled through my chest. My head was screaming, my neck was killing me and the entry point at my neck was excruciating.

Then I was told that it was all over.

“Good job.” I said to the surgeon.
“I should say the same to you.” She replied. “I’ve never done this surgery without full anasthesia. You did great. I’d want to be knocked out until Christmas to do what you just did.”
“Thanks. But remember that there is a fine difference between brave and stupid.”

I was sent home with no painkillers but Tylenol. I was up all night in excruciating pain.

The next morning I arrived at Dialysis. When I pulled into the parking lot part of me wanted to put it in reverse and explore other options. Then I went in anyways.

A sign at the door said ring bell for assistance. As soon as I did a tiny nurse wrapped in scrubs and a mask opened the door and greeted me by name. She was expecting me. To break the ice I said “Hi, I’m here for my oil and filter change.” My tiny nurse laughed.

I went inside. My first reaction was that everyone looked so sick. Yes, I know that I am sick but I really don’t look it. That’s no accident. The patients in this room were fragile, thin, asleep. Not one person was anywhere close to my age. The gentleman next to me looked just like my father…a month before he died.

All in all, it wasn’t too bad. I have painted a terrible picture of dialysis when in fact I did feel a little better when I left. In a 2 1/2 hour session I lost 3 lbs of fluid. That’s a good thing. I’m easily carrying 20 lbs of fluid that is doing nothing but putting a strain on my heart. The only thing I don’t like is I’ve never sat in a chair for 4 hours before. By Saturday I will be up to 4 hour sessions. But I’ll manage. I had a TV, headphones. a blanket and a fucking great book written by a fellow blogger that I am almost done with.

I can do this.

Now if I can only get used to this turkey baster sticking out of my shirt and the constant bleeding at the surgical site I will be just fine.

Everyone has been treating me like I’m going somewhere. Allow me to take this opportunity to tell you that I’m not. I still have a lot of shit to do.

Blogoversary

1 year ago I started my blog. I was at an incredibly low point in my life and I believed that putting it to paper, putting it out to random strangers would assist me in exorcising my demons. It did so much more than that.

230 posts, not including many discarded, later I find myself in a caring, supportive community that has embraced me at best and at the very least allowed me to share my unusual, unique and perhaps inappropriate take on life, love, family, work, relationships and chronic illness.

My blog, and consequently you, have become part of me.

Thank you from the bottom of my heart for your encouragement, support, friendship and feedback. And of course, thank you for reading…

it’s here

Yesterday I had “the big” appointment. A meeting with the entire transplant team.

It was a huge moment if you consider that at one time I wasn’t guaranteed to be approved for transplant because of the tendency of my disease to come back and infect a new kidney. To be fair, I wasn’t in love with the idea of having another transplant and wasting the most selfless gift a person could give in a mere 5 years. I would rather die on dialysis. My youngest son became furious at me when I told him that, he said he would donate a kidney to me if it only lasted a year. That kind of love is hard to find.

The meeting was a group session to start, there were 6 patients in all, most accompanied by supportive family. I was the only one in the room on the second go-round. My doctor, a brilliant man renowned in transplantation gave a 90 minute lecture on all of the details of dialysis, patient mortality rates for dialysis vs. transplantation, and this particular hospital’s (and his own) reputation and statistics vs the rest of the country. They were very encouraging, Despite the fact that I slept through most of it. The night before I slept for a whopping 1 hour. Insomnia, a lovely side effect of end-stage renal disease, has been kicking my ass.

After the group session we broke off into individual rooms where we were all to meet one-on-one with financial coordinators (they handle insurance and offer financial assistance), social workers, the transplant surgeon himself (they only have one), a pharmacist, the transplant coordinator and then the Dr. that oversees it all.

The pharmacist, once aware that I was on round 2 had little to offer. The social worker tried to pick my brain about my relationship with my mother. I shut her down immediately when she asked me about how my illness has affected my life.
“You mean besides getting divorced, losing my house, my job and access to my family it’s been a piece of cake.”
She was not amused and within minutes she was also convinced that I had a “whatever happens happens” attitude and that I am dealing just fine. Good luck selling me therapy. Next!

I then met with my coordinator who arranges all of the testing I have to go through to make sure I’m healthy enough to undergo a transplant, as well as work with potential donors. She was young, cute and funny so I went easy on her. The transplant surgeon was informative and brief and when he left I had only to meet with my brilliant Doctor and I could then go home. I was exhausted and feeling lousy.

I waited for about 15 minutes for him and when he walked in, he took one look at me and said “you need dialysis. Yesterday.” He asked what the holdup has been with my Nephrologist and I told him that my fistula, a surgically installed dialysis port, has not matured yet. He told me that he was initiating “plan B.” He called my Nephrologist and made arrangements for me to have a temporary port.

Monday, they will insert a catheter through my neck and into my heart. I will start dialysis Tuesday at noon.

Here we go. Wheeeeeeee!

Another day at the office…a Mike Valentine tale

Mike Valentine pulled his car into employee parking at 7:30 AM. Hung over with a sour stomach and a dull ache in his head, he was tempted to stay in his car. He couldn’t chalk today’s early arrival only to mere dedication, although he was in the mood to turn things around. It was also the fault of his good friend alcohol, who had begun to affect his sleep. While still wonderfully useful for knocking him out each night, remote in hand on the sofa, it had begun to affect his ability to stay asleep. He slept fitfully and often awoke before dawn, sometimes feeling as if he would be better rested if he had stayed up all night. Today, he had resigned himself to no sleep when he woke at 5 and decided to go to work.

Still, he was glad to be early. He had been dancing on the brink of tardiness lately and that was unacceptable to Mike. He was well-respected at his job for his work ethic. Part of his lore, over many positions, was that he was the first one in, and quite vocal about those who clocked in exactly on time. 15 minutes early is on time, on time is late…don’t ever forget it his father had always said. This mantra had served employers past and present well.

He walked through the parking lot, made some small talk with the security guard at the gate and went inside. He went about his morning ritual. He turned his computer on in his office and while it booted up he went to make a pot of coffee. He then went to the sales department “bullpen” where his reps sat and he collected the sales logs for the previous day. He expected his staff to have the previous day’s activity ready for him first thing each day. He was a flexible man in many areas but not this one. He wanted to know what his people were doing, when and how well they were doing it. He believed in accountability and he had a healthy fear of not knowing what was really going on. If Mike was never asked a question he couldn’t answer about anything in his department, it would be too soon.

Three reps had their reports in their outbox waiting for him, Tracey’s was not. He would have to deal with that today.  He scanned the reports as he walked through the dark office to the coffee pot, poured a tall mug of black coffee and headed to his office. The next part of his routine was to compare the sales logs to previous ones, stored in a neat folder on his desk, looking for the famous “mail-it-in” from his reps. His lengthy experience as a Sales Manager had taught him that employees get burnt out, tired of no’s and begin to write in false stops to pad their days work. Mike Valentine didn’t look for these to punish his reps, but instead to catch sagging performance and slumping morale before it became problematic. Unlike most managers, Mike wasn’t a hard ass. He was a nurturing, helpful “working manager” who stayed on top of things. He wanted his employees to succeed.

If he found a problem he would pull the rep in and talk to them, only disciplining if it is a recurrent problem. His method of detecting “rep fraud”, as he called it, was to make follow-up calls to customers thanking them for meeting with his rep. Occasionally he would hear “I didn’t meet with that rep yesterday” and Mike then knew he had a problem. His reps knew that he did this, some finding out the hard way, so it didn’t happen often. Today, everything checked out based upon his initial scan.

He then went to his emails. There were a bunch of interoffice memos, many of which had nothing to do with him. He responded to the ones that applied to his department and deleted the rest. One email, sent late last night was labeled Golf Tournament. Intrigued, he opened it. It was from one of his best and favorite dealers in Western MA, the area’s biggest Ford Dealer. Mike had struggled over the years to get a piece of their formidable business and he was moving in the right direction. He dreamed of getting all of it. His auction would really be on the map if such a high-profile dealer were to sell all of their cars at his auction. It sure wouldn’t hurt him professionally as well. The tournament was to benefit the Boys and Girls clubs in town, a charity that the owner was notoriously passionate about. Would he like to sponsor a foursome? Mike printed it and pushed it to the right side of his desk, he would ask his manager for permission when he got in.

Immersed in the remaining emails, he was interrupted by a knock at his closed door. He could see that it was Tracey by the mass of red hair visible through the small window of his office door. He told her to come in.
“Good morning” he said without looking up.
“Good morning” she replied. She handed him her sales log from yesterday. She was off the hook for today Mike thought to himself. “I went home from my final stop last night, it made more sense given where I was.”
“No worries” Mike replied. “What’s up for today?”
“I’m headed South today. I’m leaving now. I just wanted to get this to you.”
“I appreciate that. Call me from the road if you need anything.” Mike occasionally felt warm towards her despite their notoriously antagonistic relationship. Maybe she’s coming around, Mike thought to himself. Yeah, and if pigs fly out of my ass I’ll have free bacon for life.

She nodded and left the office.

more tomorrow…

 

Fingers crossed

I had my appeal hearing for my Social Security Disability claim yesterday. It’s been 8 months since a bureaucratic hack, in all of the infinite wisdom that can be collected by living in his mother’s basement, decided that I wasn’t disabled. I was deemed “technically able to work in the field previously worked.” This decision was made despite the overwhelming evidence that would prove to the simplest of minds that I could barely walk due to massive edema, and was immunosuppressed to the point that a common cold would result in pneumonia for me. It could, and it did in fact.

For 8 months I have been without income, angry and bitter about the denial and waiting for a chance to try again. I hired an advocate and they lobbied heavily for an early appeal, the original projection for an appeal was 12-18 months. Thankfully it only took 8.

As the date grew closer, my advocate and I scrambled to make sure everything was in order. Medical records were chased, prescription lists were updated and I was taught what to expect. My preparation was flawless, my nerves on end. No longer believing that Disability is a slam dunk, and with my history it certainly should be, I had little confidence that the right thing would occur. Coming within a week of the trial I felt like Red in Shawshank Redemption up against the parole board towards the end.
red
“I know what you think disability means Sonny, you just go ahead and mark your little paper there because me, me I don’t give a shit.”

It’s called rejecting them before they reject you.

Then, after speaking to my attorney, I found that I had a very good case. They are routinely reticent about statements like that for fear of false hope (Me, I’ve had plenty of that) and letdowns. Dialysis, which I am scheduled for but not on due to my recent surgery not being healed yet, is almost a guarantee. I only needed to get past the “Vocational Consultant” that would be on speakerphone during the hearing deciding if I was fit to still work. Probably the same one that kicked me in the pills the last time.

Day of the hearing my attorney and I met one hour before going and game planned. Her strategy, besides familiarizing herself with my medical history (here, memorize these 3 encyclopedia’s before lunch) for a knockdown opening statemen, was to shift gears on the vocational part. She wanted me to tell them what I used to do for work, and to not hold back.

We went in. The judge had a nice face and a pleasant demeanor. She immediately demured that my medical history is powerful and my work history solid (meaning not a slacker by resume). It was encouraging. My lawyer looked happy in her seat. We came to the vocational section and I was asked to describe my job skills and responsibilities. I took a deep breath and painted a picture, a true picture, of a frenetic but wonderful position in which 2 days were never the same. I told of a workweek without prediction, of being called away at the last minute, of long days and early starts. I told of being the go-to guy with any and all problems that no one else in my office could, or wanted to handle. When I was done, the judge, clearly impressed, asked the “vocational expert” if there was such a job out there that matched that, and did she think I was able to perform it.

After careful consideration she admitted that she had nothing. No such job exists.

My attorney believes it went well, that I should definitely be awarded. The only question is how far back they will date the claim. If all goes well, it will be retroactive to November of 2016 when I was initially rejected.

I will know by the end of this month. I am quite (cautiously) optimistic.

If you consider yourself my friend, please cross your fingers for me. I never use the word, but I deserve this.