My Cystic Fibrosis Journey: 1996 – Spring 1997

I began to get used to having lengthy periods of crisis.

Acquiring Pseudomonas Aeriginosa in my lungs was a disease milestone that usually led to more frequent and severe infections, and as a result, scarring and permanent lung damage. My long history of GI problems complicated matters. Add to that repeat kidney issues – I began having stones more often, acquired gradual liver damage, and developed all sorts of secondary problems I was experiencing some sort of painful or uncomfortable symptoms each day.

However, I was making my way through my senior year – I planned to finish my degree in December, 1996.

Spring, 1996

I had only 7 classes left – all of them English and Journalism classes, and each one of them were only offered on a Tuesday/Thursday schedule – 90 minute class, twice a week, or a 3-hour class once a week. First semester, 1996, I took four classes. I had three 90-minute classes on Tuesdays and Thursdays, and one 3- hour class on Wednesday nights.

That gave me the freedom to do my treatments, have 4 straight days to do my homework and papers each week, spend an entire day resting if need be, and growing my portfolio with the student newspaper, where I had earned a spot on the editorial staff.

One of my final articles in the student newspaper.

One of my final articles in the student newspaper.

Summer, 1996

Up!

In the meantime, Ken and I had decided to move in together – interestingly, it was my dad’s economic idea. We were already engaged, and he didn’t view it as “living in sin”. So merged our finances and went for it. We found a huge apartment in a double-decker in the middle of the city. It was urban, but it was a steal – 1200 sq ft for $550.

Up!

I had found an internship with a major insurance company in Hartford, and would be heading up their new company newsletter in the marketing department. They offered my $18 an hour, with a minimum of 20 hours a week. It was a huge opportunity.

Down!

The night before, I recognized the usual pre-sick symptoms – scratchy throat, a tickle in my lungs that I couldn’t control, and fatigue. Ken was working nights, and wouldn’t be back until breakfast time.

What would they think of me, coughing like this? 

I worried all night. I barely slept. How would I handle this?

Around five o’clock in the morning, I got my answer. I had coughed all night, and the inflammation and irritation had caused me to pop a blood vessel in my lungs. I’d had this happen a few times before, and the protocol is to stop all inhaled medications and airway clearance, and basically do nothing for 24 hours. If it worsened, I’d have to go straight to the ER.

My  Cystic Fibrosis made the decision me, but now I had to let my manager know. I wrote it out – I’d explain that I had CF, but that I managed it, and I had a situation here that I have to wait 24 hours to resolve, but I had no reason to think that I couldn’t be at work tomorrow morning.

Ken came home sometime after 7am. I told him what happened, and he told me to just be honest, and that this usually resolves on its own, and I’d most likely be fine tomorrow. I waited until 8am, when the manager got into the office. I was due there at 9am.

The phone call lasted less than a minute. I gave her my speech, with no emotion, and she answered back with no emotion – “don’t bother coming tomorrow. Good luck.” – and hung up.

I was deflated. Devastated. I knew that it would mess up their day, but you can’t play around with bleeding from the lungs. I had blown a HUGE opportunity. I had faced discrimination on various levels my entire life, but I’d never really thought about how CF would cause a problem at work. I didn’t have the foresight or experience to know what could happen. Working is very different from being in school. It’s constant. It’s unrelenting. It takes no excuses.

I lost it. I couldn’t believe that this woman would not give me the second chance. Anyone could have something happen, likea car accident or a stomach bug, that derails them for a day. Why couldn’t she give me the benefit of the doubt?

When I woke up the next morning, I felt pretty rotten – mentally and physically. I was still in disbelief over what happened. I was also sacred because that income was really important. Everything started to fall apart, including me. I remember sitting on the floor in the kitchen, unpacking, and just losing my mind. Thankfully, I had seen a therapist for a while, and I was able to call her at any time. She talked me off the virtual ledge.

Down!

In the meantime, things weren’t going well with the new apartment. The landlord misrepresented a number of things that became deal-breakers. Ken didn’t see a lot of the stuff because he worked overnight, but on his  first night off, he saw all that was wrong with the situation, from disturbingly intrusive downstairs neighbors, to noisy neighborhood teenagers who came out at 10pm every night to sit on my car, drink, and throw bottles, to trying to make us pay the previous month’s utility bills racked up by his parents who lived in the apartment before we did.

We decided it was just better to get out, so after just two weeks, we called the property manager at our previous apartment to see if my apartment was still available. It was, and we could move right in.

So, we moved everything we owned – twice – in a matter of two weeks. By the end of that move back to the apartment building, I was sick, mentally breaking down, and felt like the world’s biggest loser.

How am I ever going to contribute to our lives? What if nobody ever hires me?

Fall, 1996

Second semester, I had only 3 classes, and finally found another writing job.

Up!

The city newspaper had an opening for a Freelance Reporter in the Features Department. I remember sitting opposite my would-be editor and thinking,  I could be a Reporter! He hired me on the spot after reading my clips. Like many Journalism students, I kept a scrapbook where I put every article I wrote.

My first professional reporter job.

My first professional reporter job.

I ran out to get buy a newspaper that next morning, and shaking as I read my first professional byline. I was officially a reporter!

My editor was giving me more and more assignments, but I noticed many of them were on short notice and often in the evening. I’d then have to rush over to the newspaper offices, write my story and file it by the 12:45 deadline so that it could be edited and ready to go to print. I loved what I was doing – I had great interview skills, filed every story on time, and had great feedback from my editor. As they gave me more and more assignments, I was seeing more and more of my articles printed mostly intact – that meant that the editor didn’t have to change much around. Of course, that was their job – making the story as sellable as possible, so it wasn’t an insult and it wasn’t necessarily indicative of your talents, but it was a great feeling to see my stories printed almost exactly as I had written them.

Down!

By December, I had done about 20 jobs. The way the job went, if I was available, I took it, if not, they went to the next person on the list. There would be no hard feelings on either end. It was a freelance gig, and you did what you could and what you wanted to do. I’d taken several jobs that other reporters refused. Sometimes, it just wasn’t doable, and that was okay.

Except for me, it wasn’t. I had never said no. Until that night in December.

It was during my last month of school, writing final papers and take-home exams. My final assignments ranged from 3-5 pages to 30-50 pages. Still the school-geek, I loved working on those assignments, and spent a lot of time and energy writing, proofreading, and editing. However, the class workload, my reporter assignments, and the stress of graduating and having no plan, were collectively wearing me down. I was getting run down, and began having those pre-sick symptoms again.

It almost broke my heart when the phone rang that night about 8pm. I expected that it would be my editor with an assignment.

I always written feature stories; but this was a quick-and-dirty hard-news item. This could have started me down the path to go from peppy, feel-good feature story-writing journalism student, to perhaps getting a “beat” – a specific area of interest or geographical area.

Given my frequent flare-ups of lung and GI problems, the growing list of medications and treatments, and the recovery time I now required when I was run down, it was getting harder and harder for me to be spontaneous.

That day had been rough. I had coughed all day – not the productive cough that clears the lungs, but a hacky, non-productive cough that did nothing more than irritate my airways and throat. I had just taken a dose prescription cough medicine and begun a round of steroids – not conducive to driving around at night, interviewing people, getting good quotes, and writing a concise, compelling piece.

“Okay, we’ll go to the next guy. Talk to you soon,” he said, when I told him I couldn’t do it.

Sometimes it went a few days between assignments, but the next day, my editor called again.  I was well on my way to being sick enough to need antibiotics, and I had to refuse again. After a week or two, he stopped calling.

If I can’t handle a part-time, once-in-a-while job, how in the world am I going to handle a 9-5, M-F job?

I finally finished my classes and was unofficially graduated. However, there was no December graduation ceremony, so I’d “walk” during the May commencement exercises. Ken still had a few classes left, so he had one more semester to go.

We talked a lot about my next steps. I would continue to seek jobs that had even a tiny bit of writing, but in the meantime, I had to recover from pneumonia again, and knew that I’d be laid out for at least a few weeks.

Up!

We had talked about adopting a kitty for a while, and now that I had some free time, we thought that it was a good time to do it, since I’d be home to help the kitty acclimate. We also knew that this would give me something positive to think about. I had been feeling depressed and the idea of getting a kitty made my heart smile.

“What greater gift than the love of a cat.” ― Charles Dickens

We visited the local humane society, and toured the kitty area.

All of the cats were timid and wouldn’t come out of their cages, except one. He was black as night, with bright, gold eyes. He stuck his paws out at Ken as we walked by. Ken opened the cage and said, “what about this one?”

He made us a family!

He made us a family!

I had wanted a girl, and I had spied a little white kitty that reminded me of the cat we had when i was little. She wouldn’t come out or even let me pet her, so I turned back to Ken – who had already earned the trust of this little black cat. That’s all it took for us to fall in love, and we wanted to sign the papers immediately. There was a problem, however.

The holidays were coming around quickly, and we had planned to visit Ken’s family in Arkansas for Christmas. If we didn’t take him now, someone else might take him, but if we did take him now, what would we do with him? Thankfully, my old roommate, Jen, was going to be around for the holidays and would come over and stay with him.

It ended up working out just great, and we quickly bonded as a family. Mackenize was the sweetest, gentlist kitty I had ever met, and I was in love! I remember the day that we chose him, we had a long conversation about his name. Since Ken was a Mac geek, I started brainstorming names that had “Mack” in them. I mentioned “Mack” and it sounded like it fit, but then blurted out “Mackenzie!” We immediately went online to check out he meaning of the name, and couldn’t believe it when we read “Son of Ken.”

Spring, 1997

During this time, we were planning our wedding, planned for October 1997.  We had been engaged for over a year already, but we wanted to be graduated before we got married, I wanted a fall wedding, and the church wasn’t available until late 1997.

I spent the entire first five months of 1997 looking for a writing job. There were just none to be found. Magazines were shutting down, marketing departments laying people off, and no opportunities for newly graduated Journalism students. I’d settle for anything that let me write – news, features, marketing, public relations – anything. I had experience in all of those areas thanks to my magazine internship, doing the PR for charity events, and reporting for the city and campus newspapers.

The internet was still quite new at the time, but Ken’s graphic design classes required him to have access to a computer and the internet. So I jumped online to look for a job.

Take that, CF!

Graduation came around, and we joined our friends in black robes for the ceremony. I have to admit, there were many times I thought I’d never see this day. I’ve had many wrenches thrown in my path, thanks to my health, finances, and basic logistical issues. While growing up, my family were uncertain that I’d reach such a milestone, and many times, even in the thick of things moving forward, I wondered, too.

It was a long road for both of us, but somehow, both Ken and I made it. We’d both pretty much put ourselves through college. I even graduated Cum Laude – with honors – earning a final GPA of 3.65.

Ken and me at graduation.

Ken and me at graduation.

Lisa, Jen and me - old roommates and lifelong sisters - at graduation.

Lisa, Jen and me – old roommates and lifelong sisters – at graduation.

Up!

All during school, Ken had been busy working all over the place, gaining experience in his chosen field. He had signed up with a company that placed Macintosh professionals in temporary and contract jobs. It was great experience and exposure, and he could do it anywhere. So when I finally found a job that interested me – in Massachusetts – it wasn’t a problem.

We drove up there for me to interview. By the time we got home that night, I had a job offer. I was so incredulous that I asked for a faxed commitment letter. After all, we’d have to move ourselves up there, and we had to make sure that we had everything in writing.

Thank You, Internet!

Oh, the internet! I had found my job online, now we had to find an apartment – sight unseen, because we didn’t have the time to get up there (I also later found my first brand-new car online.). I had to start working in the next week. So I looked for apartments in our price range within a manageable driving distance to my work. We did everything through email, and planned to go up to tour the apartment and sign papers the following weekend.

We were on the fast track. Memorial day came around, and I had training from Tuesday to Thursday at the primary local office. We drove up there again and booked a hotel for three days. Ken interviewed for contract work and found something right away. We rushed back with only the weekend to pack and move ourselves up there, because I had to start on Monday at the new office location.

The job was with an advertising agency. I was hired as a part-time copy-writer/account coordinator. At that point, I’d take anything that let me write, even if it was writing fortune cookies.

We’d now have to finish planning our wedding from out of state, but this was the beginning of a great time in our lives.

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