In this photo, there is a bright blue light in the distance…. did you notice it? Don’t forget to look for your bright light.
Chapter 2
Making the best out of “change”.
2 Corinthians 4:8-9
We are hard pressed on every side, but not crushed; perplexed, but not in despair;
persecuted, but not abandoned; struck down, but not destroyed.
My story starts when I was around the age of ten. I grew up out in
the country on a farm. It was a great way to grow up as a kid. Lot’s of
fun, lots of pets, lots of room to play and explore the great outdoors,
beautiful surroundings. I always felt that learning to ride a bike and
take a few falls on a gravel road just made us a little tougher. It was
my Dad and Mom (Jerry and Margaret) my younger brother, Rick,
and myself.
It was at that age that we got some shocking news. It would be
news that would change the lives of our whole family. I think many
people hear the word “change” or realize they are going to be facing
some type of change in their life and automatically feel it is negative.
We seem to naturally tend to believe and assume that change can
never be good. We hear someone at work say “there’s a big meeting
at the end of the day, and there is going to be an announcement of
some changes coming up…” Probably everyone’s heart starts beating
a little faster. Everyone jumps on the phone and email trying to find
out what’s going on. How will this change affect me? Is it a change in
the company’s benefits, are we facing a merger or downsizing. For
those of us who have been caught up in these kinds of drastic
changes, it’s not always easy to walk out of those meetings with a
smile on our face and able to keep our head held high. But, if we think
about it, life is full of constant change. It is just that some of it is
gradual and some is much more sudden and unexpected. Some is at
our choosing and some is out of our control. It’s how we deal with it
that is going to make a difference and impact our outlook in general.
Do we let this change get the best of us? Or, are we willing to take
change and make the best out of it? A new challenge and a new
beginning!
I’ve been through those types of sudden changes, but the change
that I went through at the age of ten was quite different. At ten years
old my parents and doctors were having a difficult time figuring out
why I was getting sick so often and having trouble gaining weight. I
was in and out of the doctor’s offices constantly. After many tests, I
was diagnosed with a genetic disorder called cystic fibrosis (CF).
The tests for CF were somewhat of a unique process. They were
called ‘sweat tests’. I was tested a couple of times in my small town
doctor’s office, and they came back negative, no CF. To do the test,
they just need to collect a sample of sweat, and to do this they put my
hand in a plastic bag until it started to perspire. I was later taken to
Children’s Hospital in St. Louis, this time they taped a small plastic
lid to my forearm and then wrapped a diaper around my arm. I was
then to walk up and down the hallway several minutes in order to get
my arm perspiring. You can get some interesting looks from people
when you walk around with a diaper on your arm. This test came
back that I did have the disease. It was an emotional shock for all of
us.
At that time, there were not a lot of good medications or
treatments for CF and the doctors told my parents that there was a
good chance that I may only have a couple more years to live.
Thankfully, my dad and mom didn’t just plan for the short term once
they were given this news; they planned for a long-term future for me,
which included moving off the farm. My dad immediately began
working to build us a new home, closer to the city, and away from
some of the things on the farm that could be a potential harm for
someone with a lung disease. At the time we discovered that I had this
hereditary condition, we didn’t really know anything about it, because
none of our family members had CF. It was a situation where carriers
of the CF gene had passed it down through the generations. It is pretty
rare; only about 30,000 people in the US have it. CF occurs in
approximately one of every 3,500 live births of all Americans. It is a
disease that attacks the lungs primarily. It also causes problems with
the digestion of food, which is why I was not gaining weight as I
should. But the issue with the respiratory system is the most serious.
CF lungs have a much higher risk of infections due to the way the
body’s secretions are produced in the lungs. It causes on-going chest
congestion which brings on these bouts of chest colds, respiratory
infections, and other related problems that continually cause a
scarring effect on the lungs. This in turn causes a decline in overall
lung function. But, we all lived each day to the fullest, even with this
news hanging over our heads. It also seemed to help us not to take
things for granted and to have more of an appreciation of life. I tried
to take the very best care of myself, and it did cause an adjustment in
the entire family’s lifestyle to some degree, but we were, and are, a
close family and always go through everything together. We were in a
true situation of “do your best, and let God take care of the rest”.
Through prayer, we really turned the entire situation over to God, and
on our part, we also did not cut any corners as far as my health and
taking care of myself.
I felt very fortunate and blessed, as my symptoms seemed to be
appearing that I had a milder form of the disease, but there were still
no guarantees of the outcome. There were a lot of things that we had
to do behind the scenes to keep it from getting out of control. Lots of
“treatments” which involved having someone pound on my back,
chest, and sides for about 45 minutes at a time. And, this would need
to take place anywhere from 1-4 times a day depending how bad my
chest was congested. The whole idea behind this was to help keep the
airways as open as possible by clearing out the congestion. Otherwise
it became very difficult to breathe. I’ve heard other CF patients
describe breathing as the same feeling as trying to breath though a
very skinny straw, like the coffee stirring straws that are very narrow.
Along with these treatments was the need for doing special aerosol
treatments that involved inhaling medication for about 15-30 minutes
before and after the postural drainage treatments. So, I had to always
figure on about an extra hour, at least, in the morning before I could
head off to school. Oh, there were a lot of pills to be taken too, about
40 to 50 each day. Most of that was medication to help me digest my
food. So as you can see I became an expert at pill-taking. Starting in
1976 with this regiment, taking an average of 45 pills a day, and still
taking the same amount, ….so 45×365 days in a year, multiply that by
the number of years since 1976, I’ve already reached around the half
million mark of pills swallowed.
But other than taking my medicine at school during lunch, no one
much knew what was going on with me or what I was dealing with in
my life. I didn’t talk about it much. They probably wondered why I
was coughing all the time though. I tried to cover that up as much as I
could. For example, if I was feeling extra congested, I’d just slip off
to the restroom and pound on my chest for a few seconds, and try to
clear my lungs out some.
There always seemed to be some fun things that happened
because of having CF though. We lived about 2 ½ hours from St.
Louis when I was growing up. St. Louis is also where I was diagnosed
and where the CF clinic was that I attended. It was always like a mini
vacation to get to go to clinic. It was a treat for the whole family. My
parents had a way of making the appointments seem fun because
they’d plan some special things along with the trips. We would go out
to eat at special places, go up in the St. Louis Arch, shopping, the zoo,
that type of thing.
Once my dad got us St. Louis Cardinal baseball tickets for a game
after my clinic visit. While I was in the doctor’s office, we mentioned
to the doctor that we were heading to the game after we were done.
He asked my dad if he could see our tickets and he stepped away for a
second and we could see him making a phone call. We had no idea
what he was doing or what was going on. About half way through the
ball game that night, 2 people from Jack Buck’s office (Jack Buck
was the great Cardinal announcer and a wonderful person) came to
my seat and loaded me up with souvenirs. I still remember they said
Mr. Buck would have been over himself, but he was announcing the
game. I remember another time we were in St. Louis for my CF
clinic. It was 1982 during the World Series. The Cardinals were
playing in the Series that year. We didn’t have tickets that time, but
we spent time walking around the stadium, and I bought a t-shirt that I
must have worn constantly for the next ten years or so.
I was fortunate enough that the treatments and medication were
working well. I was able to do most things that a guy growing up
wanted to do. I enjoyed school, sports, and hanging out with my
friends.
My high school days were fun. I was on the school’s golf team
and earned a varsity letter my sophomore, junior, and senior year. I
had a great group of friends, we loved going to all the ball games,
school dances, and hanging out on the weekends. College was great
too. I might have pushed myself a little too much or too hard at times,
but I am the kind of person that likes to stay busy. I double-majored in
business, marketing & management. I also worked on an English
minor for a while too, but decided I wanted to graduate at some point.
I was pretty heavily involved in the activities within the School of
Business as well: President of the American Marketing Association, I
was appointed to the College Curriculum Committee, on the Dean’s
Advisory Board, and was also a Graduate Marshall one year. And,
besides that, I also worked about 20-30 hours in a retail department
store, selling men’s clothing. I did end up in the hospital a couple of
times while I was in college. Usually for about 15 days at a time. I
was having some more severe respiratory problems, so they used IV
medications to help clear my lungs, along with much more aggressive
treatments and therapies.
I got used to eating hospital food, even enjoyed some of it. I
always looked forward to the part of the day, while in the hospital,
when they would bring my menu in for me to fill out what I wanted
for each meal for the following day. Pretty neat to go through and
pick out from all these choices: your drink, entrée, desserts, and
salads. And I think I got to be a pro at what to watch out for and what
I knew was going to be good. I also learned pretty quickly that
sometimes you could actually write in an optional choice that was not
on the menu, and they’d bring it up to you.
Also, once I started feeling better and the IV antibiotics were
beginning to work I was allowed to go out on a “pass”. Which was
nice for me, not living in St. Louis at the time it gave me a chance to
do a little sight seeing while being admitted in the hospital. I would
go to the zoo, St. Louis Science Center, Union Station, and some of
the other interesting landmarks in the area. Sometimes, someone from
the hospital staff would go along with me, or my family would take
me out when they came to visit. I’ll never forget one time a medical
student took me out for the afternoon to the St. Louis Zoo. When I got
back to the hospital my family had arrived to visit, and since I was
gone over the lunch service, I found my little brother in my hospital
bed helping himself to my lunch. That is a fun memory. The times I
was in the hospital in college ended up not really being a big
hindrance to my schedule. I was able to get caught up pretty easily in
my course requirements.
I enjoyed college, and always felt much better once I had these
“tune-ups” in the hospital. College was even more fun when I felt
good.
Post college, I actually found myself relocating to St. Louis. I had
taken a job there in retail management. For the next ten years or so,
things were kind of up and down as far as my health. I would go a few
years without having any health issues or flair-ups with CF. Almost
forgetting I had to deal with it, other than the daily routines, but then
it would rear its head again. Once I started a career after college it was
more difficult for me when I had to be hospitalized. It was difficult
because I always hated missing work. But, I knew it needed to be
done so I made the best of it knowing there was no other option. Also,
I knew I would feel much better and stronger, and be more productive
when I came out of the hospital. It was really something else, I almost
felt like a new person once I was done with a ten to fifteen day
hospital stay. I always looked forward to that feeling. And, with the
advances of healthcare, and specifically home healthcare, I was able
to take the IV antibiotics through a home-health company instead of
needing to be admitted into the hospital each time.
A nurse would come to my house and start the IV and leave all the
supplies that I needed to administer the medication myself. This was
great. I could actually put on a suit, and have an IV catheter in my
arm, and run the line up into my sleeve and then inside the chest
pocket of my suit coat. The medicine was in a tightly wound plastic
ball mechanism and it would automatically push the antibiotics
through the tubing and into a vein in my arm. So, believe it or not, I
could be in a meeting, or even shaking hands with someone, and they
would have no idea that just a few inches from their hand all this was
going on. It made my life much easier than being in the hospital all
the time. It usually ran pretty smooth. When it was time to hook
myself up to a new dose, I’d go out to my car in order to have some
privacy and hook up another vial of the medication, then head back
into work. Then in an hour or so it was done, and I’d run back out to
the car and disconnect it. Since the medications were pretty strong,
the IV lines only lasted around 3-4 days, sometimes only a day or so.
Then I’d have to have a nurse come back to my house and start a new
line. But, it was just one of those things that I adjusted into my
schedule. Sometimes it was a real easy process to have a new line
started, sometimes, it was not so easy. Plus, with having so many in
my arms over the years (I estimate around 250) my veins became a
little more challenging for the nurses to get a “good stick”. I’ll never
forget one day at work. I left my office to visit a client where we had
contract employees working. I was delivering their payroll to them.
My IV went out; basically it started burning at the site, which meant it
was no longer in the vein the right way. It happened right during the
time a dose of medication was being administered. Basically, what
happens is it erodes the vein out in that specific area. Well, I needed
to get something done. I did not want to miss a dose of medicine and I
also needed to get the burning IV fixed too. And, I also had about 100
employees ready to get their Friday paycheck. Lucky for me, there
was a home health office on the way to my client’s location, and they
would have all the necessary equipment there to start a new line for
me. I called on my way there and they had someone waiting for me
when I arrived to take care of me. I knew I only had about 30 minutes
or so to keep myself from being late to deliver payroll. The first
option was to try and put a PICC line in. It is a longer catheter, about
6-10 inches, and it lasts longer than a normal IV line. I was in the
treatment room and there were two nurses working to try and get this
going for me. They got the old line out, and started working to get a
new one started. The problem was, I apparently had not been drinking
enough water and was a little dehydrated. That always makes it
tougher to get the line into the veins. I remember the one nurse trying
2 or 3 times in one arm, with no luck. Of course, I was watching the
clock out of the corner of my eye. But at the same time, I sure did not
want to make them feel nervous or that I was putting any pressure on
them! They were both very nice. Then the other nurse said she’d work
on the other arm at the same time. Kind of like they were in a race to
see who could get everything working first. Which was fine with me.
My mind was just focused on getting back to work. One finally
voiced those great words “there we go” which I knew meant the
needle was in and the catheter threaded OK and the IV fluid was
flowing the way it should. Well, my arms were a little sore and pretty
messy, I had not taken time to take my watch off and I remember
them helping me to get the blood cleaned out of the watchband too.
We got everything taken care of and everything was back in working
order and I walked into the conference room a minute ahead of
schedule. I had a pretty good feeling of self-respect that day. A couple
of the employees were always early because they knew I usually
arrived before my scheduled time, and they made the comment to me
“we were wondering if you were going to make it?” I think the part I
liked the most was being the only one knowing what had just
happened and what I had gone through in order to get there. Of
course, they just all wanted to make sure I got their paycheck to them
on time. And I would have felt the exact same way if I were in their
shoes. This was a real good lesson for me. We never know what
someone has just gone through. We sometimes need to cut people a
little slack, because we could be the straw that breaks their back
depending what all they’ve had to encounter that day, week, or
month.
For example, someone walks into work in the morning, and seems
to be a little short with you, or not their normal self. Our first
tendency is to give them the same treatment back, right? That is
probably the way we often feel anyway. But, we have no idea what
kind of personal or family crisis or problem they are dealing with. In
reality, the absolute worst thing we could do to them is to give them
the brush off or cold shoulder, or even worse, give them a piece of our
mind. It could really push them over the edge. If instead we could
maybe just ask them “are you OK today, is there something you want
to talk about?” Or, “is there anything I can do for you?” Yeah, we
might have to suck up our pride some, but it sure would be better if
we could all discipline ourselves to do better in situations like this.
We have no idea what kind of support the person we are talking to has
at home. They may feel like they have no one to talk to at all. They
may feel completely alone, and then they walk into work or school or
wherever we encounter them, in line at the grocery store maybe, and
if our reaction to them is negative, then they are really going to feel
stranded. We would be very surprised how far a kind word can go to
someone in a situation like that. Ever stop to think how it makes us
feel even when someone takes an extra second out of his or her day to
hold an elevator for us, or hold a door open and wait for us to get
there? When we start our day each morning, we have a couple of
options. One, what kind of mood we are going to be in, and if due to
some “external factors” we just can’t seem to control our mood, we
better believe we can control our attitude. The second option is, what
we are going to do for the attitude of others around us. Are we going
to be someone that people want to be around because they feel
encouraged? Or, are we looking out for no one but ourselves, and
feeling like no one had better get in our way?
Might I suggest this? Make it a point each day to build up that
person next to you. Stay focused on not only being positive, but
doing something positive too. You can be the best positive thinker in
the world and have the best positive attitude ever, but if you don’t let
it out and verbalize it, it’s not going to do much good, is it? So, let
others hear what you are thinking, and everyone will be better
because of it.