Mother and I

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 she’s 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 surgery’s. 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 wasn’t to big of a problem at first. I’m 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 couldn’t work and needed something to do. She ran a Girl Scout troop at my school for two or three years until one day she wasn’t 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 wasn’t 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 couldn’t 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 couldn’t wheel it herself. It hurt me deeply to see her like that, but it also hurt me when she wasn’t able to come to parent night at school (which was very important to me because I had just started Junior High) she wasn’t able to be there when I won the optimist oratorical contest for my school district, she wasn’t able to go to church with me, we couldn’t go to the movies together because she couldn’t sit up for very long, we just didn’t do anything anymore. My dad was especially no help because when he wasn’t 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 “the girl with the mom that never goes anywhere.” 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 wouldn’t go to the market and I couldn’t 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 couldn’t figure out what was wrong with her, she stayed for days and they just couldn’t 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 don’t 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? We’ve 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 she’s 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 she’s 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 don’t 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 I’m healthy!

It’s 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 don’t feel like helping, and I feel guilty after those days pass. I’ve never been sick of my mom I’ve never WANTED her to die, I’ve just wanted her to feel no pain and I’ve wanted to get rid of all of the disease.

I guess what I really want to say with this story is that I KNOW it’s very hard to be in pain all of the time, and I know that we who are not in pain cannot understand what it’s like. I know that I could be more understanding at times, but I just wish that my mother never yelled when I didn’t want to understand, when I just wanted to pretend that I was a normal girl with a normal mom.

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