Mother and I
by: Jessica Cook
Before you read this, I would just like to say that I do not mean to offend anyone with what I say
here. This is a true story, and these things were what I really felt. I know I could have been more
understanding at times, but remember I was just a kid and this was my mother. You might say that
because sheís been sick my whole life I should be used to it. No one should have to get used to
something like this, and as the years go by it actually becomes harder to understand and not just
for me but also for my mother.
I cannot remember a time when I was with my mom and not worried about how she was feeling.
She started to get sick before I was even born, or before I can remember.
It started with degenerative disk disease. For those of you that do not know what that is I will
give a quick run down. Degenerative disk disease is when the cartilage between the back bones
decays away causing the back bones to rub together and eventually rot away.
In those early years when it was just (or so we thought) the back problems, she was in and out
of the hospital and had several surgeryís. I was very young then, but I remember that Mommy
never picked me up. We would lay together on the bed sometimes and watch cartoons or I would
go out and play by myself. I remember being at the doctors office a lot, I always had to go with her
because my Dad worked, but I was always good for her. She would tell me, "The doctor is going
to make me better so you should be a good girl for him." I believed her, and I was always good.
When I got into kindergarten Mom tried to go back to work, but within a few months she was
back at home living in her bedroom again. It was okay then though, she always had the energy to
be involved with my school and take me to the park once in awhile.
When I was in first or second grade, she was diagnosed with Lupus, which is a rheumatory
disease that also affects the immune system (killing white blood cells) and is in some cases, like
my mothers, terminal.
The Lupus wasnít to big of a problem at first. Iím more than sure that my mother went through
a lot then because they had told her that she had maybe ten years left to live. She was put on
medication and was otherwise okay.
She became very involved with my school because she couldnít work and needed
something to do. She ran a Girl Scout troop at my school for two or three years until
one day she wasnít feeling good so she had someone come in to substitute her. When
we got to the car she was breathing hard and told me to go get the substitute and call 911
(the emergency number in the United States). I was only 7 or 8 then and it terrified me.
She had suffered a heart attack due to too much stress on her weakening body. The doctor
told her that she had to be less active and stay home more. After that it was hard getting my mom
out of bed to do anything.
I think it was really then that I started to understand just how much all the disease and everything
was affecting our lives. I believe that until that point in my life I had actually thought that every little
girls mommy was sick like mine. Everyday after that, when I was at school and playing at recess
I would run to the fence every time I heard a siren to make sure it wasnít going to my house. (This
happen quite frequently because my school was next to a fire station.) Eventually my teachers
became worried about me and I was sent to a psychiatrist because the teachers couldnít understand
why I was so afraid when sirens went off.
After being on medication for the Lupus for two years my mother was diagnosed with toxicity
of the eyes. When she first started taking the medication she was told that only one out of a million
people developed toxicity. It was just her luck that she would be the one.
Now off of the medication she was constantly in pain and sick with something. There was no
other medications for her illness that would help as well as the medication that caused toxicity.
It was also around this time that her back problems became worse. She had an experimental
surgery done, they replace her entire lower spinal structure with metal and electronics to stimulate
the nerves. After the operation she was unable to walk for several months and our house was full
of equipment for her. We redesigned our bathroom to fit the needs of a handicapped person and
if we went anywhere we had to push her in a wheel chair because she couldnít wheel it herself.
It hurt me deeply to see her like that, but it also hurt me when she wasnít able to come to parent
night at school (which was very important to me because I had just started Junior High) she wasnít
able to be there when I won the optimist oratorical contest for my school district, she wasnít able
to go to church with me, we couldnít go to the movies together because she couldnít sit up for
very long, we just didnít do anything anymore. My dad was especially no help because when
he wasnít working, he was drinking and it embarrassed to have my drunk father there. I spent
those years getting rides from friends parents, or some of our other relatives.
In those days my mom had taken up residence on a large bed in our guestroom and the couch
in the living room. All of my friends came over to hang out and talk to my mom and I was always
known as ďthe girl with the mom that never goes anywhere.Ē Every time someone said something
to me to prove that their mom must love them more because she goes out and does things with
them, I cried. Every time my mom went to the hospital I cried. Every time she promised to do
something with me and then at the last minute, after I had been counting on her to be
there, canceled, I cried.
After awhile she began to get better. Her Lupus seemed to be going into remission and she no
longer had back problems (although she will never be able to bend again.) In those months she
did more with me and tried to be there for me, but soon my world shattered again.
She began having trouble holding on to things. She was unable to write or even sign her
name. She would spend days at a time wide awake, in pain, and in bed unable to do anything.
By then I was older and she would give me instructions, money, or whatever else I needed and
I would take care of business walking all over town just to get things done. We never had home
cooked meals because my father wouldnít go to the market and I couldnít carry all of the food home. I gained a lot of weight from that which caused me even more self doubt then I already had.
One night it got so bad that I had to call 911 for probably the sixth or seventh time in my life.
The hospital couldnít figure out what was wrong with her, she stayed for days and they just couldnít
find anything. So one day they drugged her up and sent her home. She went to a specialist who
diagnosed her with Fibromyalgia (FMS) and Neuropathy (spelling?).
Not to long after she was diagnosed, I got my licence. Once I had my licence things started to
get even worse. She never did ANYTHING at all. I donít know if it was the pain, or if she was
giving up, or a combination of both. I was handling almost everything along with my school
work, my own social problems, and my own medical problems (I have very bad asthma and I
get bronchitis quite frequently and pneumonia at least once a year).
She just kept getting sicker, it was always sicker. I never depended on her for anything
anymore, and I secretly began praying at night that she would just slip away easily. How many
diseases can one person live with? How much pain can one person endure? Weíve known for
years that she would die, it was just a matter of waiting and when.
Last year she was diagnosed with diabetes. It was almost funny. It seemed like a game show
or something, even to my mother. "And tell our contestant what disease sheís one this month Bob!"
I have no way to properly describe her "pill basket" other than to tell you that it is a large basket
full of little bottles of pain pills, antibiotics, chemo pills, insulin, blood pressure medications, and
dozens of other things that I have refilled for her every month or so.
Today, my mom is alive and still in pain. We sometimes joke about how it would be just her
luck that everyone who lived healthy lives would die early and she would live to be 90 years
old and in pain every single day of her life. I sure hope sheís wrong.
It hurts me to think that she may not be there to see my wedding day, or that she may not
be there to meet her first grandchild, she may not even be there to see me graduate from high
school next year, she may not even be here to eat the lunch I always make for her tomorrow.
I donít want you to think that I live only to take care of my Mom. She still does A LOT for
being as sick as she is. She now cooks dinner for us once in awhile and she even packed boxes
and moved boxes and furniture when we moved. I can only imagine how many pain pills she went
through during that, and how bad she felt after it was all over. I know I felt bad and Iím healthy!
Itís just that now that I am older and more independent and perhaps a little more
understanding, I try to help her when and where I can. There are days when I just get sick
of the disease and I just donít feel like helping, and I feel guilty after those days pass. Iíve never
been sick of my mom Iíve never WANTED her to die, Iíve just wanted her to feel no pain and
Iíve wanted to get rid of all of the disease.
I guess what I really want to say with this story is that I KNOW itís very hard to be in pain all
of the time, and I know that we who are not in pain cannot understand what itís like. I know
that I could be more understanding at times, but I just wish that my mother never yelled when
I didnít want to understand, when I just wanted to pretend that I was a normal girl with a
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