reader submissions. It is an attempt to allow people to tell their
personal stories, in the hopes of bringing greater compassion to the
unique issues each of us face. If you would like to submit a story to
this series, click here. Today’s guest posts is by Kellie.
In 2007 I was diagnosed with a parasitic infection in my eye. It was
horribly painful, both the infection and the treatment. The parasite
was chomping away on my cornea, eating it and any other microbes that
were present. Treatment consisted of 7 different eye drops,
administered each hour, with 5 minutes between each drop. I had to do
this 24 hours a day. So, to be clear, this means that at the start of
each hour, I placed the first drop in. Then, at 5 past, I did the
second. At 10 past, the third. And so on, until it was 35 past the
hour. Then I had 25 minutes to sleep. And then I started over again.
All. Day. Long. One drop was baquacil which may sound familiar to
anyone who owns a pool as it is sold as a pool cleaner in some areas.
Another drop was the equivalent of an industrial toilet cleaner. I
would do these two first to get them over with.
I also had to
drive two hours away to go to Boston for checkups every day for the
first two weeks. My husband would pack us a lunch in one cooler and my
drops in another, and we would head off to spend the day there.
Thankfully, my mother was able to move in with us and be there to care
for our 3 kids. We were double thankful that my husband worked at a
company that allowed each employee to donate 1 or 2 sick days to him to
use during this time.
I finally had to be admitted to the ICU
and remained there for a month that summer. The parasite could not be
stopped and the decision was made to do a corneal transplant to
determine if the parasite had gotten into my eyeball. Thankfully, the
pathology department determined that the parasite had remained contained
in my cornea and my life wasn’t threatened (the parasite once in the
eye ball works its way through the optic nerve to the brain, at which
point it is terminal).
I did know at this point that my cornea
would fail as I wasn’t permitted at this point to use steroids to
prevent rejection. The cornea held on for a while, but I did develop a
cataract that would have to be removed at the same time as I had my
second corneal transplant in the spring.
Like all mommies, I made
it through most of the winter avoiding all the colds and viruses my
kids brought home from school. Unfortunately, I couldn’t avoid them all
and the one I did catch, was a doozy. Lots of vomiting in the house
that week. One night while I was getting sick, I felt an awful pain in
my bad eye. It went away after I finished and got comfortable on the
couch. But when I woke up the next morning, I looked like I had had a
stroke. That side of my face, around my eye was just hanging. We
rushed to Boston, sick kids, tons of plastic bags for anyone still
puking, and lots of saltines in tow. It was determined I had “blown” my
eye, fragile at this point due to the toxicity of the drops, the
injections I had and the surgery. The good news was, I had nothing to
lose at this point and we could give it some time to see if it could
re-inflate. And it did. Too much.
It was determined that when I
had vomited not only did I damage the back of the eye, which sealed
itself, I also damaged the drainage system and as a result developed
glaucoma. Severe glaucoma. Normal numbers are 10 to 21. Mine were
regularly in the 30 to 40 range and one emergency visit I was up to the
high 60’s, even with drug intervention.
Long story short, it
wasn’t until I had my second corneal surgery that it was determined that
the glaucoma had destroyed most of my optic nerve. The cataract had
not allowed them to test my vision or to see the damage being done. I
had two additional surgeries to slow down the intraoccular fluid being
produced and a tube to drain the excess away as the pressure was causing
extreme pain.
The time frame of all of the above was 4 years.
Finally, just last summer, I met with an ocular plastic surgeon to
discuss making some repairs to the area around my eye as it has
sustained a lot of cutting and wasn’t matching my other eye. After I
explained what I was hoping to discuss, he looked at me and said “Why?
You are in pain every single day, why are you keeping the eye?” And I
couldn’t answer him. And just like that, I felt a huge weight lifted
off my shoulders. And I cried like a baby. I hadn’t had a chance to
cry for myself before that. I had two kids, a husband and a host of
other family that I had needed to stay strong for through it all. And
the doctor sat there and let me cry. And then we scheduled to have my
eye removed.
Since, I’ve had the eye removed and a fantastic
prosthesis made. I wake up every day without pain in the eye and I go
to bed not having to worry if I am going to wake up in a little or a lot
of pain. My biggest issue now is losing the last third of the weight
that I put on following the second corneal transplant when I was put on
high doses of steroids.
What do I want people to know? I want
them to know that everything I went through was because I wore contact
lenses and had never, ever been told that I was at a higher risk of
parasitic/fungal/bacterial infection of my cornea. I was never told to
never, ever let water come in contact with my lenses. That I shouldn’t
shower with them, swim with them, and that even drops of water left
behind in my case could be life threatening.
I also want people
to know that if you aren’t sure what to say, just say “I’m sorry you are
going through this.” Don’t tell someone that they are lucky they don’t
have cancer, or that at least it isn’t an arm or leg that they are
losing. Don’t tell them that “at least you have another one.” I’m
aware that things could have been worse, but that doesn’t mean that I
consider myself lucky.
Don’t make empty offers to someone who is
sick. Don’t ask “what can I do?” or tell the sick person to call if
they need anything. They will never call, even if they need something.
The biggest help was the people who just did things. The dojo where my
son and husband take martial arts created a calendar and each family
from the dojo signed up for a night and cooked us dinner every night for
2 months. It was delivered each day so that we didn’t have to find
room in the freezer for a bunch of meals. When some people from the dojo
discovered that our stove wasn’t working and we had to use the broiler
to heat everything up, they found us a used stove and showed up at our
house with it. They moved it in and took away the old one. The men who
showed up knew my husband was embarrassed, (we were in $35,000 of
medical debt and buying a stove wasn’t possible) and they shook his hand
and said, “we’ve each been there before, and someone helped us.”
Co-workers
donated vacation and sick days to my husband, without him needing to
ask HDR for an extension. When the company was sold, the owners made one
of the contingencies be that my husband got to keep all the accumulated
days.
People who were acquaintances at the time, became good
friends and the ones who could be counted on. When I had my final
surgery, friends sent gift cards to local restaurants and pizza places
so that I wouldn’t have to cook. My son’s kindergarten teacher showed
up at the door with a meal. Another mother waited until my parents went
home and then showed up with food for that first night I was on my own.
The mother of my daughter’s best friend delivered a care package to me
and it was filled with items that I could use when I could do nothing
but sit and watch tv during my recovery – small snacks, some healthy,
some indulgent, hot chocolate, lotion for my dry skin and a small bell
to ring, instead of yelling (which could cause strain) if I needed
someone.
I had a lot of people offer to help and I think they
really meant it. If I had called them and asked them to do something,
they would have. But it put the onus on me. When people are ill or
hurt, they already feel vulnerable, and the last thing they will do is
make themselves more so by asking for help.
This was a learning
curve for me. I too was guilty of the empty offer of help. Now, I
know better. After a friend was injured, instead of an empty offer, I
called and told her I would ensure her children got home from school
safely the week after her surgery. I would have offered to cook, but I
am aware of my own limitations – in terms of not only skill, but also
time.
My advice is, when offering to help someone who is sick
or hurt, make sure to be specific. Be clear what you will do and how
long you can do it for. Understand what you are capable of doing. Many
people offer to provide a meal, but that can be expensive to do and
time consuming. Make sure you have the time and the money. Also, and
this is a big one, deliver the food in throw away containers. When
people are sick, or caring for a sick person, the last thing they need
to worry about is properly cleaning your dishware and returning it in a
timely manner. I actually had one person call my house everyday for 4
days asking if we still had their cookie sheet. I was in the hospital
at this time due to a complication and the cookie sheet was the last
thing on our minds.
If you don’t have the time, money or energy
to dedicate towards doing something for someone who is sick or injured,
you would be amazed what a card will do to lift the spirits. To know
that someone took a moment to think enough of you to buy a card, sign it
and send it, can have such a positive affect. No need to worry about
what to write inside, a simple “thinking of you”, “sending positive
thoughts/prayers” can bring such comfort to another person.
If
anyone is interested in learning more about my journey, I have included
the entire story on my blog. In addition, after being asked many times
by friends, family and acquaintances what I look like without my
prosthesis, I blogged about that as well. I am part of an online
support group and included photos of myself without my eye as well as
photos of my prosthesis and the process of putting it in my socket.
Many people put up with a painful eye as they fear what they will look
like with the eye removed, or that the prosthesis won’t match. I wanted
to show people that it isn’t as bad as they think. That post alone had
hundreds of visitors – some I am sure out of curiosity, but I would
like to think most were people who were seeking help in order to make a
decision that is best for them.
Thank you for allowing me to
share my story. If you wear contacts, or know someone who does, I
encourage you to educate yourself on the proper care for them.
