You don’t look sick…part 3

Revealing to my wife and family that I needed a kidney transplant was a turning point. My children were confused and upset. I told them everything would be fine. My wife painted a much more grim picture. I was furious with her for being so negative, at one point during an unfortunate argument she blurted out “it’s ok kids side with him he’s going to die and you’ll be stuck with me”. It was a brutal comment and hard to bounce back from. I explained to the kids that the best case scenario was a transplant, the worst would be dialysis. Not ideal, but still alive. I kept to myself the attitude that dialysis is the WORST option, giving me zero quality of life. It was a stressful time, only being compounded by the weight of mind-boggling debt and pending foreclosure. Which is historically great for blood pressure.

The backlash on me was partially deserved. By minimizing my condition I did help myself cope, but I alienated my support network. By avoiding being doted on and being treated differently, and most importantly having my family worry about me, I forced them to come to grips with something in a short amount of time, that I have had most of my adult life to deal with…that I may lead a short life. But at that point, I still couldn’t tell people how I was feeling.

At work I couldn’t escape the attention, it was a big story. In late 2009 I was hospitalized for a serious infection that was renal-related. My manager came to visit me on a Saturday with a stack of magazines for me. He said, “looks like you’re going to need a donor soon, huh?” I nodded in agreement. “What if I told you that we might have one? Deb approached me yesterday and wants to be tested”.

I was of course thrilled. She would prove to be a match and, well you can guess the rest. The company made a story out of it. The local CBS affiliate station came to do an in-office interview with Deb and I. For weeks, complete strangers would approach me and say “Hey I saw you on the News! How are you feeling?” People who knew me at the auction and other areas of my life would say “Hey, I saw you on the news. I never knew. You don’t look sick”. Heavy sigh…there was no escaping it now.

After the transplant, it was the new normal. I am blessed to have so many people care about me. The outpouring of support was amazing from friends, family, social media and company connections. My company threw a huge fundraiser for me, everyone knew my story. It truly renewed my faith in people. But post-transplant I was riding a wave, I felt great and I wanted to put 15 plus years of feeling like shit warmed over behind me. I worked out, I hiked, I bought a bike and then a mountain bike. I found a group on Facebook of local mountain bikers and I showed up. I made a bunch of great friends. One day, after a particularly grueling ride I peeled my sweat-soaked shirt off to change into a dry one and there was my enormous scar for all to see. One guy inquired about it and I gave him the brief breakdown. “Hey, I saw you on the news. That’s quite a story. You look great man!” Now that’s what I was going for.

Now let me refocus for a moment. This series is not about being happy or glad or grateful if people ask you how you are. It is about being known by your illness. When your illness defines you. When people think of how much it sucks to be sick…they think of you.

So when I constantly reference the times when people say “You don’t look sick” or ask “How are you feeling” it puts a very particular set of reactions into place. So far in this series, I am describing the birth of Superman as a coping mechanism. As opposed to the earlier-in-life Superman that tried to save the day and fix everything. He was born because I simply couldn’t afford to look sick and I could never actually tell anyone how I actually felt.

My family relied on me. I needed to be the Dad and husband I promised to be. I needed to be strong. So I covered it up, in a way I denied my illness. For them and for myself. When I was really sick, I had to say no to a 10-year old and a 9-year old who asked their Dad to play football in the front yard with them. I couldn’t do it. I couldn’t get off of the sofa. The look on their faces haunted me. After that, I forced myself to do it or I found a way to avoid it. They didn’t need to know so I didn’t tell them.

With my employer and co-workers I couldn’t answer the “How are you feeling?” question without committing career suicide. It may be against the law to discriminate in the workplace against a person with illness but it doesn’t offer much advancement. I had a huge job that other people wanted and a salary that I needed to maintain. So if my Manager said “How are you today?” there was no reason to give it a logical progression to “How are you feeling?”

I lied, I denied. I feel great thank you. I don’t look sick because that’s the point. It’s a whole lot safer than answering like,

“Well thank you for asking. This morning I barely made it to work on time because I was up all night with spasms that no doctor can diagnose. I threw up in the shower this morning and I am wearing a pair of shoes 2 sizes larger than normal because my feet are so swollen I can’t get the others on my feet. I am really fatigued right now for no reason and I am hardly in the mood for your fucking bullshit but here I am…AREN’T YOU GLAD YOU ASKED?”

to be continued

 

lofty standards

I am a quirky guy, that’s as nice as I can put it. I have certain expectations out of life. In addition to the sun rising each day, I expect electronics to work. I expect passwords to be accepted 2 times in a row. And I expect people to have an acceptable level of intellect and courtesy. I have lofty standards in some categories, others I have come to accept that we’re now grading on a curve.

The areas that I have learned to look the other way in are how people dress in public, personal hygiene, manners, tolerance, acceptance, lack of respect for personal space, attention spans, lack of respect for elders and an abhorrent lack of knowledge in civics and history.

The areas that I continue to have lofty standards in are respectful discourse, eye contact, professionalism in the workplace and doing your job well. As a manager of large staffs in several fields, I know when a person is good at their job. When I encounter someone, ranging from a clerk at a 7-11, a food server to a bank teller, if they have an attitude problem I am severely tempted to tell them to just quit already and make room for someone who gives a fuck. See, that’s my minimum requirement in life…give a fuck.

As a former sales professional, I am highly critical of those in sales. Particularly automotive sales. I did it and was damn good at it. Thorough, courteous and knowledgeable, I knew how to take care of my customer. Consequently I expect the same type of experience every 5 years or so when I buy a car.

This week my Mom got the itch to get a new SUV. She has had hers 5 years and she never keeps one longer than 5 years. A local dealership sent a notice about a recall, she reviewed it and asked me if I would go with her when she dropped hers off, in case she saw something she likes.

We saw a very nice one in a funky blue exterior, black gut and loaded. We asked for a salesperson to show it to us. Quite the opposite of the usual experience of being hounded when you first walk in, they had to find someone to help us. We were introduced to a nice guy, about my age. As he attempted to start the car he found it to be dead. Considering that is was 11 degrees with 30 mph winds it wasn’t alarming. He escorted us inside, jumped it and joined us inside as it warmed up. In conversation, as we made small talk as the car warmed up, I tossed it out there that I have been in “the biz” for over 2 decades. This serves to put a guy on notice that there will be no shenanigans today. He was pickin’ up what I was throwin’ down.

We went out to the now warm car and he asked us to get in. My mom got in the driver seat and he began to attempt to wow her with the center console. The one that wasn’t working. He was a little flustered but we got past it. The Nav screen, audio display and bluetooth set up was down but I assured my mother that I knew what it looked like and it’s very impressive. The salesperson was grateful for my save, and we drove it. Long story short, she loved it.

We went inside and asked to see some numbers. As he made small talk and drew up a proposal I played with my phone. He may have thought I was on Facebook but I was going to be his worst nightmare. I was running market reports on her trade and regional cost analyses on the new vehicle to see what others are paying. I knew there was 12% markup in domestics and quietly showed my mother what I came up with. Surprisingly they only came up 1000 more total than I wanted to pay. We got what I wanted. Easy, great deal, nice people and a good experience overall. We agreed to pick it up Monday night.

Last night was as cold as Friday was. But the car was ready, had a new battery, clean and warm. With a still-broken center console screen. Oooops. SMH. My mother was annoyed, the salesperson was flustered. He screwed up and he knew it. I asked what they were going to do and he asked if we could bring it in the next day (today). I told my mom that I would drop her off at work, bring it for her and wait for the work to be completed.

I did this as planned, waited 3 hours for them to tell me that it needed a part that they didn’t have that needed to be ordered. I told the salesperson that my mother wasn’t happy. He didn’t say anything. Here’s where I got annoyed. I said, “Really, that’s your answer? Do I have to spell it out for you?” He didn’t know what I meant. “What are you going to do for her because we’re going to be getting a little survey soon asking how you did. Do you feel me?” Crickets.

Finally, I spelled it out for him. I want you to do something for her! By the time I was done we had a promise of the first service free, a loaner when I drop it off on Friday, a full recon and a full tank of gas. Of course I had to spell it out for him with crayons and colored construction paper.

It’s difficult holding people to your own standards. It’s even ok to not be that adept at catching the sarcasm. It’s another altogether to not recognize that someone needs something and you need to give it. As a consumer I deserve it and as a person I expect it. Unfortunately, common sense is a plant that doesn’t grow in everyone’s garden.

Since when is knowing your shit a liability?