Revenge? . . . Nah! Just Triumph!

I hadn’t taken the Prednisone a whole week before things were looking up. One month later at doc’s office, he told me his research showed Sarcoidosis may eventually go into remission, I’d just have to wait it out.

I had gained back the 35 pounds and then some. I was a bit overweight, plump even, and loving it.

Eighty milligrams of Prednisone a day causes that effect.

Doc asked, “Are you feeling pretty much normal now?” I said, “Not quite like my old self just yet doc, but I’ll take ‘new normal’ any day.” Doc was happy.

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My complexion was back, the crack rumors had ceased, I enjoyed the last laugh on the naysayers, some of whom would still occasionally avoid eye contact, when we met in the hall or the elevator.

Best of all the constant pain was gone and I was back in the gym.

I had found out who my real friends were, eliminated the fakes, and I was happy.

Her smile eased its way back onto my wife’s face and her worries vanished.

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We were Happy!

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Fast forward 15 years and even though I know it’s there lurking, I can’t realistically say I’ve experienced a serious symptom in over 12 years. I like to think it has been in remission.

Sarcoidosis is a serious disease that doesn’t discriminate.

About me

• I’m an African American male.
• I’ve had Sarcoidosis for fifteen years.
• Initially I was afraid, now I’m educated on the disease.
• I’m not lazy.
• I know who my real friends are.
• For this moment I thank God my Sarcoidosis is in remission.
• I feel like all African Americans should get tested for Sarcoidosis if they have any of the symptoms.

As they say in my part of the country, “I’ve been Blessed.” I’m one of the lucky Sarcoidosis survivors.

I hope if you, or anyone you know has the symptoms, you’ll join me in getting tested and having loved ones do the same. Sarcoidosis is a very serious disease, but with diligence and a little pro-activity, it can be managed and . . .

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That’s my story. Hope it helps.

See Living with Sarcoidosis Series 1 – 10

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The trip home was better

On the commute home that Saturday evening, I still had to deal with my emotions and other commuters.

One driver, an older woman, was driving erratically in my opinion, so I made a move to pass her, then changed my mind because we were coming up on the toll booth.

A highway-patrolman saw what I did and flashed the dreaded red lights. “I pulled you over for weaving on the bridge, we’re you having mechanical problems?”

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“Nah, I’m just tired.” I decided not to mention the woman. Traffic school taught me to not even attempt to blame other drivers for my misdeeds. “I work for (a utility company). They have been forcing us to work seven days a week, ten hours a day for the last month.”

He chuckled to himself like he’d heard it all before and wrote something down. “Please step out of the car. I need you to perform a few tests.”

The cold air and drizzle felt good, just what I needed to pep me up.

After I passed the drunk test, he said, “I’m going to let you go with a warning, to go home and,” (wait for it) . . . “get some sleep. You look like you need to get some rest.”

I thought about the waiting day-bed and said, “Thanks for that, and you can count on me knocking out as soon as I get home.”

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He continued, “I know what you mean about (utility company), my brother-in-law works there too. I almost took a job there myself, but changed my mind. He’s been stuck working overtime for weeks too. Sis is not feeling happy at all about it.” He chuckled again.

The rest of the weekend wasn’t a blur, it was all invested in much-needed sleep.

Then comes Monday. Back to work, more rumors and as it turned out, hope.

See Part 7. My illness Her Pain

See Part 9. There’s Hope Yet!

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There’s Hope Yet!

When things seemed out of control, my granddad was known to say, “There’s hope yet!”

On Monday morning my cell phone rang at about 10 am, during my commute. I like to think  I was in the Caldecott Tunnel, awake, when it rang, but in retrospect, that’s more likely me trying to make my story more dramatic.

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The caller was my respiratory specialist, who’d kind of

become a friend, and he sounded excited. He said, “Charles, I’ve got good news, bad news and good news. How soon can you be here, and which do you want to hear first?”

Swerving to take the exit, I said, “The bad news, I’d prefer to end this chat with good news.” “Ok,” he said, “here’s the bad news. There’s no cure for what you have . . .” Silence.

Surprisingly, my life did not flash before my eyes, so I said, “And the good news . . . ?”

“We’ve finally gotten a handle on what you’ve got. Your lung biopsy revealed that you have a rare disease called Sarcoidosis.” I could actually hear him smiling.

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“Say what? Leave it to me to get a rare disease that can’t be cured?”

But still hopeful, I said, “Alright Doc, what’s the other good news, this first piece does not fit with my plan to live past a hundred and ten.”

“Thought you’d never ask,” he said cheerfully. Doc knew my plan to be a hundred and ten was important to me. I promised myself when I was 6 that I’d live at least 110 years.

“I can’t promise you a hundred and ten, but I wouldn’t rule out ninety. We can get your Sarcoidosis under control with steroids.” More silence on his part, and now mine. I told you he was good.

I’m thinking, ” Sarcoidosis? Steroids?”

Ok, I was a pretty consistent weight lifter before the illness and Doc knew it. I was familiar with some of the horror stories about steroids . . .

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. . . and he must have read my mind because he said, “Not that kind of steroid Charles, so when can you get in here?”

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See Part 8. There’s Hope Yet

See 10 Revenge? . . . Nah! Just Triumph!

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That’s What Friends Are For

I took a detour before starting my commute home one night. I stopped by my best friend’s house for what began as a friendly game of pool, but soon turned into a “vent” session.

Once I shut the heck up, he looked up from the pool table, smiled at me and said, “Hey man, you and I both know you’re gonna beat this. “Yeah,” I said, “I know. Thanks.”

Then he said, “When it feels like everything is turning to s–t, and I’m sure you feel like that right now, remember dude, s–t makes flowers grow.” Then he sunk the eight ball, in the corner pocket. “S–t!”

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Thanks Eric, for hanging in there with me bro.

That’s when you know you’ve got a friend. They keep it real. They listen and don’t judge and they don’t dwell on the negative. A true friend has your back no matter what the circumstance.

They are the ones who pull for you every chance they get. Refuse to let you wallow in the muck of self-pity and “woe is me.”

Not like the, “it’s all about me,” fair-weather, so-called friends,” who are always willing to receive, but never manage to give.

Every day comes with its own challenges, health issues, financial woes, or whatever. It is always better to have someone to lean on, or if it’s your turn, be someone for them to lean on during those times.

See Part 5. Rumors Sprout Wings

See Part 7. My illness was her pain

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Rumors Sprout Wings

Back at campus, people I had worked with since ‘82, inched away from me in the elevator. Black, Hispanic, Asian or White, it didn’t matter.

Most of them looked the other way when I approached, concentrating on the elevator buttons like they were reading a juicy novel. It was almost comical.

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Nobody ever bothered to ask what was going on with me, how I was feeling or why I looked the way I did? They preferred to whisper, stare and point. I’d heard of things like this happening, but it was always to someone else.

So-called friends were suddenly busy all the time, or they out-right disappeared. People who didn’t know me spread rumors with so much detail you’d have thought they lived with me.

One rumor that really got to me, mainly because of who started it, began to spread early on a Monday morning. I went to work early because I had a pulmonary test that afternoon.

Halfway up the sidewalk to my office a co-worker who associated with me outside of work, blocked my path and pulled me to the side.

“Hey man,” he said, punching my shoulder, “how you feelin’ today?” “I’m good bro. Thanks for asking.”

“I thought you’d wanna know the latest. People up here sayin’ you lost all that weight ’cause you smokin’, crack or somethin’.”

“Now I’m a Crack-head? Where’d you hear that b.s.?”          

A woman I never would have suspected was telling my co-workers that she knew for a fact, I was on “crack.”

She claimed that she had heard it over the weekend from somebody, who’d heard it from somebody, who’d heard it from somebody, who was on crack. Not exactly the horse’s mouth.

“She don’t know me man!” I yelled, “Ain’t no end to this crap!” You can guess who was on the elevator when the doors opened. My first mind said, “confront her,” but I refused to invest any energy to rebut the woman or anybody else. Besides, like most of the others, she wouldn’t make eye contact.

People will smile in your face, while stabbing you in your back. By the time the rumor mill got up to full buzz, I had contracted everything from Aids to Zits.

One of the department officers that I reported to had heard the rumors. We’d worked together for 13 years and played racquetball together. He was a good guy.

He called me in for an “urgent” meeting and the first words he said was not hey, how are ya, or good morning. He said, “We’ve got to do something, I know you are on drugs. You smoking crack, or what?”

My dad taught me, “You won’t get stuck, if you don’t stop moving.” In my effort to keep moving, I didn’t have time to dwell in his negativity. So much for a racquetball partner.

I answered, “or what.”

See Part 5. Rumors Sprout Wings

See Part 6. That’s What Friends are For

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My illness was her pain

The following Saturday, after “crack rumor” week, was a mandatory work day. Forced overtime, the company called it. The money’s good, but I’d rather have slept in.

That commute was the longest 65 miles of solitude I ever drove.

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I awoke on the daybed and climbed, or rather rolled off onto the floor. By now I was in pain and stiff all the time. I showered, dressed, went to the door, looked back at my wife and was about to say , “see ya tonight.”

I froze in my steps and asked, “What’s up honey? Why are you looking at me like that?”

She said, “Nothing,” and gave me a slightly tighter hug than I normally got before I left for work. I tried to joke, “Oh no! Not the nothing!” She didn’t smile.

I couldn’t read the look on her face as she handed me my jacket and said, “See you tonight, be careful.” It wasn’t like she was frightened. She wasn’t crying, frowning or anything I could put my finger on.

Then it dawned on me. Her look said she was resigned to the possibility, or maybe even convinced, that I wasn’t going to be around

much longer. I have to admit I’d felt the same at times and had dealt with a ton of despair, but had to keep positive.

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I said, “It’ll be alright. I’ll beat this. I promise.”

Problem was, I had another promise to keep. I was nowhere near 110 years old, and I’d promised my six-year-old self that I’d live at least that long.

I’ve never been a quitter and wasn’t about to give up, but I was exhausted with being ill.

Honestly, looking back, that day began as the lowest point in my life, before or since. That was when I realized how taxing this whole thing was on my wife. She was a trooper but it was wearing on her.

I was emotional all the way to work. One minute laughing at fate, that I’d be leaving my family behind. The next minute, crying, the next, pissed.

Fellow commuters, if they happened to glance my way would have thought I’d lost it. And I did for a while. Hell, I deserved to lose it.

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I must have ticked off one mini-van-mama in particular, because she pulled alongside me one mile from entering the tunnel and stopped applying eye-liner long enough to give me the middle finger salute.

I think she thought I was shaking my fist at her, when I was railing at my circumstances.

See Part 6. That’s What Friends Are For

See 8. The trip home was better.

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My New Normal

Get up. Go to work. Work. Nap at lunch. Work. Two-hour nap after 6 pm. Commute. Sleep in tunnel. Home. Fall on the couch. Sleep. No supper. Just me, the couch and sleep.

It got so crazy at one point that when she knew I’d be coming in soon, my wife would  open the daybed in the family room, which was right through the hallway from the garage. I’d come in, plop down, exhale, and go to sleep.

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This went on for three months straight. It was my life. Through no fault of her own, it was hers too. We’d go to the doctor’s office every couple of weeks. I’d take all the tests, blood, pulmonary, etc., then we’d go home so I could take a nap.

I didn’t know what to do other than pray, because the answer was definitely beyond my control, and the doctors were at a loss. I was sleeping more and more. Not eating. Just sleeping.

Then in just three weeks, I lost 35 pounds. Jaws sunk in. Skin tone went pallid. Just like that. Boom!

I have to admit, I was looking kind of scary.

My wife did all she could to keep my mind off the obvious, but I could tell she was concerned and it was wearing away at her too. I remember one day she walked in and said, “We’re having a family photo taken, this Saturday,” and walked back out.

I hated the way I looked. Why’d she have to pick now? Then it dawned on me . . . I’d better take the photo, just in case.

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To this day that photo remains on our bookshelf. When I look at it, I am always reminded of the strength it took for her to offer support when she had no one to lean on.

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See Part 3. My Symptoms

See Part 5. Rumors Sprout Wings

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My Symptoms

Lethargy consumed me. I could not wait for the others to go off-campus to lunch, which I always refused, because I needed to sneak in a nap.

This was unusual behavior for me, because at the time I was an active, athletic, health conscious, 40-something, 130 mile a-day commuter, who played Racquetball every day at lunch-time and had plans to celebrate my 110th birthday.

Suddenly I’m sleeping all the time? Something ain’t right!

I’d sleep through lunch, stay late and sleep for a couple of hours, but not charge over-time. My supervisor thought he was getting extra work out of me, for free. Hah! As the ex-prez, (you know who you are) has been known to say, “Not gonna happen!”

The reason I mention the commute aspect is because it was during one such commute that I began to suspect something was terribly wrong.

That day I had worked the 10 am – 6 pm shift. After contributing a much needed few hours of nap time, I’d left work around 8:30 pm.

For many years my route on the commute home was to drive west on highway 580, to 13, to east 24, through the Caldecott Tunnel in Orinda, Ca. I used to jokingly say I could do it in my sleep.

I must say it was a bit of a surprise, when I actually did it.

The first time it happened, I drove into the tunnel in the fast lane, as usual. I noticed a big, brown, Ford Crown Vic’ next to me in the right lane. It was veering real close to the center line, so I eased to my left just a little bit. Figured he was probably afraid of hitting the outside railing and would prefer to tangle with me in my little commuter.

Next thing I remember, I looked up and had traveled about a half-mile beyond the tunnel, still in the fast lane. I remember swerving slightly toward where the Ford should have been, but it was nowhere to be found. Did I dream the Ford part? I can’t say.

Realistically, I must have gone into a zone of some sort, still holding on to a consciousness, but as far as I was concerned, I had fallen asleep.

After that first time, it happened many nights in a row. It got to the point to where I looked forward to it, and yes I know that’s crazy, but I craved the rest.

Every night for weeks I was God’s co-pilot. Something else had to be lighting my path. Like clockwork I’d wake up a half-mile out of the tunnel, roll down a window, take a breath and thank God I made it.

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It became my new normal.

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See Part 1. Living With Sarcoidosis

See Part 2. What’s Wrong With This Picture! I’m Not Lazy!”

See Part 3. My Symptoms

See Part 4. My New Normal

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“Good Health and Success are a Lifestyle . . . Let’s Choose to Live Well,”

CK Dillon

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What’s Wrong With This Picture! I’m Not Lazy!”

I remember one day specifically when the symptoms began to manifest, initially in a persistent cough.

An associate I’d worked with for over 10 years knew something was wrong. He had never seen me ill. Heck, I had been the picture of health proudly earning a ten-year perfect attendance pin!

He burst through the door and came straight over to my desk. Handing me a huge bag of cough drops and two bottles of cough syrup, he said, “Hey man, I stopped at the drug store this morning and got you these.”

Then he said, “We’ve got to finish this project today bro; I’ve got to get out of this room, it’s killing me!”

We were in the process of building a new communications system for a university. This was the last day that I would have any assistance. In a way I looked forward to the solitude.

After he and all the others made similar statements about being ill, I began to think the room we were working in had become contaminated from all of the new equipment. Once turned on, the equipment would warm up and give off a “burning plastic” odor.

Everyone who entered that room and worked there for a day or two, became ill. Some refused to come back.

That realization was my “Eureka” moment. I had figured out why I was sick.

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If I could move out of the room . . . I’d get well. It was a no-brainer. I happily gave the campus my request for a new office.

There were a few challenges!

• this room hadn’t always caused illness
• it had been my office for 13 years prior to the system upgrade with no problems
• the campus didn’t have any more office space
• the campus rep did not feel the room was the cause of my problems

Air Quality Inspection

Up until that time the campus rep and I had a civil working relationship, but it quickly became strained when I arrived at her office with what I considered a “joke” solution. She didn’t appreciate my attempt at humor.

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I wasn’t laughing either. I was doing what I had to do to get well. When I requested the air quality inspection, I was assured there would be no adverse findings.

Unfortunately, a contaminated room was the only logical answer to how I was feeling.

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See Part 1. Living With Sarcoidosis

See Part 3. My Symptoms

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Today’s article is the first in a series about a disease, Sarcoidosis, that hits more than close to home with me. It’s something I’ve lived with every day for the past 15 years.

Hope I do it justice.

Here’s My Story.

Early fall, nineteen-ninety-five, was to be an extreme and lonely period in my life. After being ill for several months during the summer, I was diagnosed with something called Sarcoidosis.

Initially told by a specialist that the disease affected mainly African Americans and Scandinavians, I quickly realized I had no one to talk with who could relate to what I was going through.

I didn’t know any other African Americans who had been diagnosed, and I didn’t know any Scandinavians, period.

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My close friends listened and lent a sympathetic ear when I needed it, but they couldn’t feel me, so to speak. I imagine that’s what it’s like with most serious diseases.

Here’s a big “Thank You!” to all of you who participate in various support groups.

When I was first diagnosed, there was very little information on the web, or anywhere else about Sarcoidosis. I’d spread the word whenever the opportunity presented itself, but most people just couldn’t relate. And frankly, my knowledge was limited.

Fast-forward to this decade and the disease is no longer obscure. I’ve come to realize many other African Americans were right there with me, waging the battle against an enemy unidentified.

Those who came before weren’t known as pioneers. They were referred to in a less endearing light. “He’s Lazy with a capital L,” was something I used to hear a lot about a certain older gentleman, “he’s always been lazy.” Lethargy is a common symptom of Sarcoidosis. Maybe “old dude” wasn’t just “lazy.”

One of my earliest symptoms was lethargy. Friends and co-workers had always known me to be energetic, but suddenly I’d hear whispers, “he’s always real tired lately.”

At that time, in nineteen-ninety-five, my symptoms were a “Charles only” problem. I didn’t want to be tired, or as some would feel, “lazy,” I just couldn’t help it.

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See Part 2.  . What’s Wrong With This Picture!  I’m Not Lazy!”

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