My Cystic Fibrosis Journey: January – August 1993

So many times, I’ve made wishes, goals, and even plans, with a huge level of uncertainty around me. For a long time, I didn’t know how to get from point A to point B in a straight line. It was for several reasons:

  1. Straight lines only exist on paper.
  2. I panicked when unexpected happenings interrupted my flow.
  3. I didn’t have enough faith in myself.

As I said in my last post, most of my life was a string of things that happened to me. I never felt that I could control anything. But the secret is that for the things you cannot control from happening, you can control how you view it, and what you do next.

The year 1993 was a time when I began to take control over my life.

Work

My bosses were very pleased with how I did my job at the appliance store. Employees and customers who’ve been around for years complimented me for my attention to detail, my ability to multitask – handling four phone lines at a time, dealing with customers on the phone and in person, maintaining up-to-date filing system, creating “best practices” for how to solve different conflicts, and helping other employees when needed.

Health

Until I got my health insurance in April, I had to be creative in how to see doctors, acquire medications, and keep myself as healthy as possible so that I didn’t miss work. The day my insurance became effective, I set up several doctor’s appointments, took a personal day during which I saw every doctor, got all my prescriptions together, and filled every last one of them. It was am amazing feeling. I didn’t feel like I had to beg anymore.

I also meant that I could see another specialist – an Orthopedic Surgeon – about the ski accident I had several years earlier. I had been limping more and more and some days needed to use crutches just to give my leg a break.

I still lived at home, which helps me pay down a lot of my medical debt. I also made arrangements for my educational debt, because until that was solved, I could not start the process of trying to go back to college – any college.

Resources

The goal I made to go back to get a college degree was forefront in my mind. Although I made a decent wage at that time for the area, and the environment was more of a family environment, I did not see myself staying there for a long period of time. I wanted a degree. I wanted to write for a living. I could try to do it without a degree, but there was so much that I desired to learn and experience in an educational and professional writing environment before trying to do it on my own.

The Bureau of Vocational Rehabilitation

I found out about an organization funded by the state which assists “persons with significant physical or mental disabilities to prepare for, find or keep a job.” My Cystic Fibrosis qualified me to participate in the program, which would develop a one-on-one program designed to help me reach my personal work goals.

For some people, that meant learning how to use a computer and common software programs, taking typing or communication classes, etc.

My goal was to go back to College, and work in a writing capacity in a business setting – possibly in a marketing or advertising department, writing newsletters, drafting proposals, interviewing people for articles, etc. The specific role I ended up getting wasn’t as important as earning the skills and experiences that would make me a good candidate desired for many different jobs in writing/business settings. My experiences running projects and charity effects, my writing aptitude, and my great conversation skills, combined with my writing credentials, could land me in any number of jobs. I also desired a job that would allow some flexibility should I get sick, and earning a degree along with my skills and experiences would give me a much better chance of getting a job that didn’t require physical strength or endurance, that allowed me to visit the doctor if needed, perhaps have the flexibility to do work at home, and that the world wouldn’t fall apart if I got sick,

The ultimate goal of my work in this program was to get back into and finish college. Because doing so requires so many difference types of resources, my case worker would also provide

  • Access to  credit counseling services to help me manage the rest of my outstanding medical bills
  • Help negotiate with my old school to attain my records
  • A class to practice and increase my typing aptitude
  • Access to the state job books – books that listed every open state job
  • Scholarships and Grants that helped pay tuition ,room and board to any state school, offered, to students without financial resources

Strong, Forward Steps

As Spring came around, I was in another whirlwind of activity, but this time, it was all moving in the right direction.

  1. I completed creating my jobs’ guidebook, over which everyone marveled. Part of f the reason I made it was in case I had a sick day, but also so that when I left the job, every little nuance of the job was covered.
  2. I prepared my College Application as a Transfer Student, which was accepted!
  3. Paid off most debts, including the one that allowed me t finally GET MY RECORDS!
  4. Got qualified for  the State Medical Insurance program which would begin once I left work and began college.
  5. Now that  I had insurance, vacation time, personal time , and sick time, I Met with my Orthopedic Surgeon, who decided that I really needed to repair my torn ACL Ligament, now. We scheduled scheduled surgery. My sister, living in PA at the time, came home for two weeks to basically wait on me hand and foot. With my leg in a passive movement machine, I had to stay in bed all day except to use the bathroom and take sponge baths. With my mother working, I had nobody else to help, and my sister really came through for me. After two weeks, I was allowed to “walk” and start doing some stuff. I returned to work after two weeks, on crutches and attending physical Therapy several days a week, and doing it at home every morning before work.
  6. I also had the chance to do something I’d never done, had never planned to do, and knew I’d probably never do again. I actually took some time for myself. My best friend from high school called me up one night, telling me that her dad ‘s travel agent got a great deal on a 3 night/4 day cruise to the Bahamas, and would I like to go? My total cost would  be just a few hundred dollars.

Wow. I had never traveled except to Disney once, and in 3rd grade, we visited my Aunt in Arizona that ended with me in the hospital with an asthma attack (boring story, it didn’t make it in the earlier posts) . I had never been anywhere. I jumped at the choice, cashed in three vacation days. We left on a Thursday, to return on a Sunday.

Patty and me in the Bahamas.

Patty and me in the Bahamas.

The first day at sea was glorious, but we had to spend the rest of the trip “below deck” because there was the “Perfect Storm” brewing in New England, that caused temps to dip into the 50s in the Bahamas, snow in Miami (where our plane flew out of), and made a mess of every travel plan for the next week. Despite the weather, three different airports, and spending the night on an airport floor, it was a great trip. Colorful drinks, soft-sand beaches, food – all day, and getting dressed up for The Captains Dinner stand out in my mind as “a good time”. Thanks, Patty, for inviting me along, and to your parens who worked so hard to get us back home safely.

Moving On, Moving Up, or Held Back? It’s all perspective

Summer rolls around and my life finally has direction. A friend from High school had scheduled a “mini reunion,” and while it was exciting because all of the kids from my graduating high school class had graduated, I was just halfway. Although everyone was encouraging of me and my plans, and felt bad for me because I had a hip-to-ankle robot-looking brace on my leg in the middle of summer, I felt like a wounded freak who, once again, had fallen behind.

Taking this time off – though I had absolutely no chance to do anything else – put me in place of permanent “lateness”. I’d always be behind everyone else my age. I didn’t graduate college at 21, on time. I wasn’t about to start a great new job at an amazing salary. At 22, I had never left the country, never gone on a “road trip”, and pretty much stalled in every possible way. All of this because of my stupid disease. If I didn’t have CF, I could have gone to a different and less expensive) school. It feels like, at each crossroads I approached in life, I was never allowed to choose any of the four paved roads in any direction – I had to  either take the pothole-covered gravel road  that curved back behind me, or jump into an empty hole of dust and debris below.

Not anymore. I became the captain of my own ship, and everyone who I found to help me, was part of my crew, standing beside me to help me arrive at the next destination of my life.

As the summer passed by, and things slowed down a bit at work, I decided to tell my boss and the Owners that I was leaving to go finish shcool. One of their daughters was just beginning college at the time, so they were very excited for me. I did sense some apprehension in their voices, because findind someone suited to this job would be very difficult, even with my guidebook. I stayed on good terms with them, so much that they said that if I needed a job next summer, either they or the other town appliance repair shop (they only repaired, didn’t sell) might need help, and they all knew I did good work. So I left at the end of August with new confidence, a generous gift from the Owners, and lots of promised that I’d come back to visit. Interestingly, they tried several people in my job, and nobody could handle it, so one of the older daughters had to “step in and be you” as she told the story.

I am One, I am Me!

That left me with a good feeling. I’d never felt “irreplaceable” before. It was a dang nice feeling to have!

Coming up next: ToniV goes back to school!

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