My recent hospital visit really played into the narrative I have recently opened; that is to say that it did little to dissuade myself that I am indeed a FUS (a fucked up shithead). It may be difficult to do so, but please don’t argue with me on this. I know what it is and the key to my functioning is to be completely honest with myself.
A myriad of emotions are bustling within me. For starters, I’m embarrassed and concerned about the long-term ramifications of my recent hospital stay. Will future doctors treat me differently based on the nature of my last stay? Will I be taken seriously in my quest for treatment of whatever malady(ies) are next for me?
Why is that my initial assumption would be that people will think less of me, especially if they are part of my circle? Am I wrong in my assumption that people just look at you differently once they hear the words “psych ward”? Why would I think that those closest to me wouldn’t understand and support me? After all, most people that I have spoken to, doctors mostly, thought very little of the details of the situation and focused instead on immediately trying to get me into a better place.
I have told more people in my blog about the details of my last hospital than I have in my circle. My closest friends know all of the details, amazingly my family does not. My and oldest daughter is my health care proxy and she and my mother made the decision not to tell my other 3 children. They know that I was in, they just don’t know the details. I suppose I will tell them when I am ready but for now I will maintain my strict policy of not making people worry about me.
To the best of my analytical ability, and I am surprisingly adept in that area, I believe that is my biggest problem and the root of many of my issues. I am not honest with people when they ask me how I am and therefore it always turns about to be a little worse than expected when I do fall.

I’ve always been a believer in the old adage “when someone asks you how you are say fine, at the end of the day they don’t give a shit”. It’s harsh but there’s a grain of truth to it. Greetings are formalities and should be treated as such. I have always taken it a bit farther when it comes to admitting that I am not doing well, I smiled and acted fine. So when I did break down it was always worse than everyone thought.
Lately, fine was not happening. I was sick and my resolve to deny that dialysis was kicking the shit out of me was gone. I reached out to my doctor’s and they didn’t respond to my liking. So I tried to force their hands to treat me medically under threat of force.

I’m not crazy, I just fucked up. But this time I hurt the ones around me. Not only do I have to carry that around with me, but the pain is still there. The insomnia is still there. The memories of the outrageous, uncharacteristic and very dangerous thoughts that ran through my mind in which I vividly imagined every conceivable scenario in which I would end my life are still there. Now compounded by an unimaginable and insurmountably heavy sense of guilt for forgetting that there are people in my life that care for me, people who would miss me if I were to commit such an act.
Maybe that guilt would be less intimidating if I finally admitted that I am not doing as great as my fake smile and false assurances would suggest. Do they even want to know what it takes for me to get out of bed in the morning?

I hope I shake this darkness and never fall down this rabbit-hole again.

the waiting room

If the sun is out I take the motorcycle to Dialysis. If I have to be there then I’m going to arrive and depart with a smile on my face.

Most days I spring out of my chair, exit to the waiting area, grab my helmet and go. Sometimes there are people in the waiting room, waiting to pick up a patient. I know most of them and who they are waiting for. For the last 2 weeks there has been a new face, a woman, 70ish with a kind face, that I deduced was waiting for the new patient Bob. Bob is a 70ish ‘Nam vet who just started treatments. I’d never spoken to him but he looks like a nice guy, with a new unpleasant development in his life.

Today, as I exited the clinic and grabbed my helmet she spoke to me.
“Can I tell you that you’re amazing?”
“Amazing? Hardly. But thank for you for saying that. And while we’re on the subject, why exactly am I amazing?” I replied.
“You bounce out of here, helmet in hand and ride a motorcycle out of here. After Dialysis. I don’t know how you do it.”
“I have to”, I replied. “It’s the only way I can make it tolerable.” I sat down across from her.
“I see Bob wears a lot of Harley stuff, is he still able to ride?”
“No.” I had touched a nerve. “He can’t support the weight of the bike anymore because of…”she motioned towards the clinic door, “this”.
“I get it.” I replied. “This is tough”.
“Not on you. If it is you don’t act it.”
I explained to her that it is quite to the contrary. That I have a tough time with it sometimes but I put on a strong face and do my best to make the most of when I feel good. She politely nodded as I talked, looking down at the floor.
I asked her how Bob was handling it. She told me he is feeling pretty lousy but getting used to it. I found that to be a good time to tell her that I was the clinic’s Patient Advocate and offered to talk anytime she or Bob may want.

At that moment Bob came through the door. His wife immediately said “This is Bill. He’s the one with the Bike. “
“Hey, Bill. Nice to meet you.” Bob wearily sat down in the chair. “Nice bike.”
“Thanks”, I replied.
“Bob”, his wife spoke up. “Bill is the Patient Advocate for the clinic.”
He looked at me and said “What do you do?”
“I’m here if you need advice, recommendations about the dialysis process or just here to talk if you need it.”
“Talk about what?”
“About Dialysis. About the emotions you will feel and the aches and pains you will experience. We all go through it.”
His facial expression showed total resistance. Then, before my eyes it changed. “Maybe I’ll take you up on it sometime.”

We walked out. He checked out my bike. I was careful not to ask him about riding. He then surprised me. “I’m thinking of getting a trike. I don’t have to worry about supporting the weight.. I can still ride that way.”
“That sounds awesome, Bob. The more you keep doing what you love, the less sick you feel.” I winked at his wife. She smiled.

I watched as they got into their car. She drove. As they pulled out she mouthed the words “Thank you” to me.

I’m not sure I did anything remarkable, I just shared the best kept non-secret I have. Illness only wins when you allow it to. Keep living your life.

You don’t look sick…part 2

“How are you feeling?”

I ended the first installment by recalling my brief bout with Testicular Cancer in the late 90’s. It was a formative moment. During my recovery, albeit a short one, I did some serious soul-searching and eventually re-evaluated my entire life.

I decided to explore the job market outside of my little comfort zone. I envisioned all of the upcoming moments with the children that I would miss due to my schedule. The restaurant life was indeed getting old, my back and legs were my livelihood and the benefits were abysmal. When I was forced to take a weeks vacation to recover from Cancer surgery it became painfully obvious that I needed a job using my mind and my degree that also had decent benefits. While rehabbing, I applied for and eventually achieved the job that would be the stepping stone to the best job of my life.

I also realized that this was my second real brush with my mortality. If you have been following my story, you know that I have kidney disease. I have never mentioned my motorcycle accident.

Just ten years before I was hit by a drunk driver. I was hit on the left side and pushed off of the road. I went off the bike, over the bars into a guardrail. I broke 3 ribs and fractured 4 vertebrae. My only memory of the incident was gasping frantically for breath and blacking out. My next memory was waking in the hospital. I had gone into shock. I spent 3 weeks in the hospital, followed by wearing a back brace for 6 months, and I was unemployed. This is the event that led me to the restaurant. Now 9 years in, I was “Billy one-nut”, still dealing with back issues from crashing my bike, and beginning to experience regular symptoms of my burgeoning kidney disease. It wasn’t debilitating at this point, but it was becoming a part of my daily mindset and not just an “episode” here and there. It would also be the beginning of the “how are you feeling”? phase that we with chronic illness deal with.

First, and I think that I speak for most of us with chronic illness, let me say that I honestly appreciate someone inquiring as to my well-being. It beats the living hell out of the popular greeting of “’Sup?” any day. It shows consideration and familiarity. Speaking only for myself, when people routinely greet me with a “how are you feeling”, it’s official. I’m the sick kid. By my logic, which is admittedly questionable at best, my illness has defined me. I was not going to let that happen. I kept at it at the gym, I (politely) dodged questions about my health, walked upright even when hurting and eventually it went away.
images (10)

It worked for me. My stubborn, bullheaded nature allowed me to fool my kids, appease my wife and keep my job. The family knew but didn’t dwell on it because I didn’t give them a reason to. My boss didn’t know until it was revealed in 2008 that I would definitely need a transplant.

IGA Nephropathy is a rare kidney disease, and like me it is an unpredictable smartass. It lays dormant for years on end, giving you the illusion that it’s not a big deal and then it pops up, robs you of a huge amount of function and says “remember me”? My esteemed team of physicians had done nothing up to this point other than manage symptoms, for IGA is so unpredictable they really didn’t know what would happen. In 2008, when it was confirmed that I would definitely need a transplant I had to tell my family and my employer.

My wife’s reaction was priceless. True to her personality, the “how does this affect me” gene reared its ugly head and she accused me of deceiving her. I have forgiven her since but I will never forget her response.

“If I knew you were that sick I never would have married you.” Normally a stalwart person, that one stung me. She apologized but it was too late. Her rationale was that I was going to die and leave her a widow with 4 heartbroken children. I reminded her that I had warned her when we began dating that I had an uncertain future health-wise.

My employer was very supportive. In fact, they embraced it. They would prove to be one of the only bright spots of the entire ordeal. The downside…everyone knew what was going on, I was now the sick guy. The day had come where every greeting was the default, dreaded

“How are you feeling?”. Here we go


To be continued…