Required Reading!

by Jim Nelson

Over the years, Jim Nelson, a lung transplant receipient, has written about a lot of subjects related to COPD, lung disease of other kinds, and the processes that people and their caregivers experience. However, there is one subject that he has not addressed directly – how to get your caregivers, family, friends, and acquaintances to understand what you are going through. People speak of misunder- standing, of disappointment, of isola- tion. They talk about the frustration of watching their life as they knew it slowly slipping away. And that is one of the problems, one of the sources for all of the misunderstanding.

Lung disease, as a general rule, comes upon the person so very gradually that they themselves barely notice it, especially in the early years. It is such a slow, insidious thing that the majority of people are not even diagnosed until they are deep into the disease. There are four stages of COPD but the vast majority are not even diagnosed until late stage two or stage three. They go through the early symptoms, to be sure. However, they blame the cough, the excess sticky mucus, the shortness of breath with exertion, on growing older, on being overweight, on being out of shape. All of these things, or some of them, may be true, but there just might be something else going on.

So you go through a slow process as lung disease takes over more and more of your life, your activities, your thoughts. First, there is just the occasional episode of won- dering. “Is my smoking starting to catch up with me?” “Dad had emphysema before he died. Are breathing problems hereditary?” “It can’t happen to me! Should I check with my doctor? Do I really want to know?”

Then, the exacerbations start. “Exac- erbation” is a big word for the lung infec- tions, the pneumonias that plague those of us with weak, compromised lungs. They are the bumps in the road that really slow us down, that keep us from doing the things that we want to do, that we are usually able to do. These periods of illness, of weakness, are obviously noticeable to those close to us, those who are accustomed to spending time with us. Thing is, in the early years of the disease, we are able to fight them off, to “get better”. So from the point of view of those close to us, we are all better now, and we can go play. We can do all of the things we have always been able to share with them – shopping and partying and such. This is the behavior that they have learned to expect from you, and logically figure that you will continue to be your old self.

Trouble is, the exacerbations take some- thing out of us. We never totally recover from them. We can come close, given good doctors and compliance with our meds and maybe even some exercise, but we will never again be quite as strong as we were before. Our friends and family will have no idea that anything is missing. Neither will we, initially.

As time passes, our lungs will grow weaker. That is just a fact. But again, it happens painfully slowly. Day-to-day or even month-to-month, we notice no dif- ference, given the absence of the dreaded exacerbation. We go on with our lives, just as we are expected to do. Realistically, if we don’t notice any changes, it is unlikely that anyone else will do so.

But then the day comes when the gang plans to go shopping or go out to eat or go dancing, and you are having a bad day. You decline, to the surprise and disappointment of everyone involved. What in the world? Are you upset? Are you just being lazy? What is going on? You feel terrible, because you didn’t want to let everyone down, and frankly, you physically feel terrible. The shortness of breath is getting worse, and you have to stifle the cough more and more as time goes on. It is becoming harder to get through your days, but you don’t want to burden anyone with the chilling idea that this really isn’t going to go away.

During the years when I was losing my lung capacity (and we are talking about twenty years from the time that I quit smoking to the day of my diagnosis), my ability to do stuff gradually diminished. It was so gradual that I really had no idea what was happening, but the dark specter of emphysema did make its way to the surface a couple of times. I pushed it away, and actually did not notice as Mary, the greatest caregiver in the known universe (my opinion), developed the habit of stop- ping more often on our walks to look at the scenery or smell the flowers. It was really handy that she did so, because it gave me a chance to catch my breath!

We had friends and family members in those days who did not really understand what I (we) were going through. There were days when I could barely wiggle. There were days when I felt pretty good, but they became more and more rare as the years passed. I am certain that there are still those who have no clue what it was like for me to spend the majority of my time fight- ing for breath, and for Mary to watch me go through it. Some of them, the ones who cared enough to ask, who really listened to the answers, had some inkling of what was happening in our lives. They were, and still are, in the minority. Until the day when we finally get up the nerve to be seen by friends

No one can seem to agree on how April Fools’ Day (or as some call it All Fools’ Day) began. It definitely has been around for a while as some say it started in 1582 when Pope Gregory XIII ordered a new Gregorian calendar. New Year’s Day had been celebrated on April 1 and some people just did not want to change. Others made fun of them – calling them fools. This is why the correct title is April Fools’ Day and not April Fool’s Day! The day is celebrated all over the world with people playing jokes on others in hopes for a laugh. Even groups and corporations have gotten into the act!

1. Pranks on April 1 can be traced to when children in France began secretly sticking this onto the backs of those they were pranking:
   1. Paper fish
   2. “Kick me” signs
   3. Funny names on paper
   4. Number stickers

2. The first recorded April Fools’ joke was pulled in London, England, and involved inviting the public to the Tower of London to see these animals being washed:
   1. Horses
   2. Dogs
   3. Lions
   4. Elephants

3. Since 1986, this city has been issuing press releases about a non-existent April Fools’ Day Parade:
   1. Chicago, Illinois
   2. San Diego, California
   3. Tampa, Florida
   4. New York, New York

4. In this country, April Fools’ Day is celebrated for 48 hours, with the second day being called “Tailie Day,” and the focus is on pranks involving people’s
   1. Ireland c) England
   2. Scotland d) Canada

5. In 1998, which restaurant published a fake advertisement for a hamburger for left-handed people?
   1. McDonald’s
   2. Wendy’s
   3. White Castle
   4. Burger King

6. In 2005, NASA posted on their web- site that water had been found on Mars. Was water really found on Mars?
   1. Yes b) No

7. In 1957, Swiss farmers enjoyed a sur- prise “spaghetti crop” when spaghetti grew on
   1. True b) April Fools’ prank

8. Samsung planned to attach routers to pigeons to bring free Wi-Fi to London,
   1. True b) April Fools’ prank

9. An inventor created a pill that gives flatulence a chocolate
   1. True b) April Fools’ prank

10. A species of flying penguins was dis- covered in
    1. True b) April Fools’ prank

11. Darth Vader runs for president in the
    1. True b) April Fools’ prank

12. Google “Translate for Animals” helps owners decipher barks, meows and
    1. True b) April Fools’ prank

 

Answers will appear in our next issue.

and family wearing our oxygen cannula, until the day that there is finally a visible sign that we are sick, how are those close to us expected to understand why we can no longer run and play with the rest of the world? We barely understand it ourselves. You will fight that day. You will avoid, at all costs, the idea that you have fabricated in your mind that the cannula makes you look weak, vulnerable, sick. You will risk harming your heart, you will put your brain cells in jeopardy, just to avoid the anticipated looks of pity, the stares of little children. Or big children. I did.

However, I quickly found that the can- nula became helpful in ways other than keeping my body healthy, or enabling me to do stuff that would otherwise render me breathless. For those who cared, it became a conversation starter. We had learned as much as we could about COPD, and we were therefore able to explain exactly what was going on. The people who were close to us knew that I was trying my very best to stay as healthy as I could for as long as I could, that I was exercising and using the oxygen when I was supposed to do so. Finally, they also realized that I was sick, that my occasional reluctance to join them in activities had a reason.

So, in case it is not obvious by now, I want you, as the person with lung disease, to communicate with those close to you about your disease. In order to do that, you must learn as much as you can about it. Read the posts in the online support groups. Talk to your medical personnel.

I want you, as the caregiver, to know as much or more about the disease as the person for whom you are caring. It will be useful in dealing with the changes that will eventually happen, and it will help you to explain that to others.

If you are a friend or family member, if you give a damn about the person, take the time to learn. Ask questions. Offer to help, and mean it! Get it through your head that the person would love nothing more than to join you in your activities, but that there will be times when they just cannot do so. If you really do care, plan outings that the person will be able to handle, given their shortness of breath.

One of the symptoms of lung disease is social isolation, partly because of lack of understanding from you. Please make the effort to understand, to help. If you have taken the time to read all of this, you will likely be willing to take the next step.

Please learn. Please understand. Please be the kind of friend that you would like to have if you are ever faced with a disease that will limit your activities. If you cannot find it within yourself to take that time, you may well become part of the problem. It is that reluctance to admit the existence of the disease, the refusal to believe that there is a real reason for the person’s reactions, that leads to the sadness, the loneliness, the isolation. Please don’t be that person.

Uncle Jim