What do you do when you feel like your life's purpose is complete?

Many people don't know their purpose in life. I feel like one of the "lucky" ones, although I think that, most of the time, finding your life's purpose involves having a tragedy in your life, and because of it, finding your purpose. Not so lucky, I guess.

My son died of cystic fibrosis a little over seven years ago, and before he died, I embarked on a journey to try to save his life. I HAD to study biochemistry. It wasn't what I would have set out to do, if I had had a choice, but in order to save his life, I was forced to study it.

Three years after I began my journey, my son died of CF. I was decimated; grieving a loss beyond sorrow. But I was also on automatic pilot. I had studied for so long, it was the only thing that I knew to do with myself, after I lost him. And, the strange thing was, the very day that he died, a study was published by two scientists from Canada, about the protein that is mutated in cystic fibrosis. No one else saw how important this study was, but to me, it explained so much. And, even though my son could no longer benefit, I could not stop studying especially in light of this new information.

Some people say that the soul is only here long enough to complete it's purpose. Maybe that is why my son died on the very day that that study was published. I don't know. All I know is that the information from that study was like a lightning bolt for me. There I was, floundering around in the dark, following mainstream science, and getting nowhere, and there was this piece of information from this study, which seemed to give me a real handle on understanding the disease. It just fit; I don't know any other way to describe it.

Today, if you look at the studies on glutathione in cystic fibrosis, the scientific literature is replete with information on the topic, but they haven't gone anywhere with it. It is merely one piece of information among a myriad of pieces that form a puzzle that is not yet put together.

I took that piece of information and I followed it out. I'm not saying that there was some "eureka moment," when I knew the answer to everything about this disease. I worked hard; I came upon dead ends, and I backtracked, and went another way. In the meantime, a group was formed around me, of CF parents and patients, lawyers, biochemists, research scientists, and medical doctors. Somehow these group of people grew and grew in their number, until they were hundreds strong. They organized, and they used their different skills to incorporate our group into a non-profit. They raised money and paid for the chemical compounds that I requested, so that I could perform experiments. They paid for every piece of research that I needed and had it sent to me, via regular mail, and by email.

And I was very, very lucky. My patent attorney for the drug that I have found to treat the disease asked me, "HOW did you do this?" I told him that even a blind hog finds it's way in the forest every once in a while. He just laughed. But it is true--I was persistent.

But I was lucky, too. Even when I was wrong, and was studying a protein that did not have the properties for which I began studying it in the first place, that protein turned out to have a major part in the pathenogenesis of the disease. Because I had learned about that particular protein, I could go on, in my understanding, and learn more about the disease.

Now, I have finished. I have constructed a new model that explains the pathology seen in this disease. And I have found a compound that will not cure the disease, but if taken at the correct intervals, in the correct amounts, will cause the person who suffers from this dreadful disease to become like normal people. No more treatment of the symptoms. No more lung transplants. No more respiratory therapy. No more pancreatic enzymes. Just take a couple of pills, a couple of times a day, and you are as if you do not have cystic fibrosis.

I assigned all of the rights to the patent to the non-profit research group that supported my efforts for all of these years. They will test the drugs, and they will see to it that they are given to the people that need them. I don't care about profit, although I am sure that this compound will make a lot of it.

When everything started to coalesce, and the non-profit was formed, I told them that I thought that the worst thing that could happen to any organization that was set up to help people suffering from a disease was that the organization would outlive it's purpose--that is, it would begin to want to have a life of it's own, and to perpetuate that life, as most bureaucracies do, and to forget it's main purpose. But, once that purpose is accomplished, it should either get another purpose, or disband.

There are still some things to do, I know. The patent application must be finished, and the studies must be finished. And, the royalties must be assigned, etc., etc. Once these things are done, though, the only real question is a matter of price, and because we are not assigning the rights to this compound to a pharmaceutical company (which will bury it, if they have any drugs that are used to treat CF), but are instead engendering real competition, by "farming out" the royalties, that should not be a problem. The compound is not expensive, and the patent is only a "use" patent.

WHAT am I going to do now? I am still on automatic pilot. I wake up in the morning and I want to study and there is nothing to study anymore, that I have not already studied.

Hopefully, there are going to be some people in my organization who have some compassion for other people, other parents, who might suffer the loss of their child, because of ANOTHER disease; a different disease. I just don't know how I am going to get them to focus on something else.

And, how in the world do you turn years of studying the balance of humoral vs. cell-mediated immune factors into a study of anything else? Where does this shit fit in?

Okay, I've spilled my guts. Hopefully, I've gotten it all out, and can proceed from there. Or maybe not. Maybe you can help me with this.

Melanie

Take a break. Spend a few months on a beach somewhere. I know some good ones in Baja California if you're interested.

You know, yourself, that you always think about this shit. You just can't get away from it.

Or maybe REAL scientists DO take breaks. I'm not a real scientist, though. I have lived my life, these last ten years, with PubMed, and the full articles derived thereof, in the background, like dinner music. At first, it was because I had no choice; I had to save my son. Now, it is a part of the fabric of my life.

REAL scientists are lucky. They work; they answers questions, and then they get to go home, and leave their work at the office. I am not a like them. I have always done this work in my spare time. It is what I DO when I am off of work.

I have gotten "hooked" like a drug, on turning things over in my mind; on solving problems, when I don't have to be at my real job. It really is like a drug.

I miss studying. I miss having something to study. It is what I DID, for relaxation, when I was off of work. It is what I did, when I had nothing else to do. It was what gave me pleasure.

Maybe I should begin studying those things that were secondary in this disease? The problem with that is that there is not much research written about them, and right now I travel so often, with my job, that it is impossible to set up anything, in terms of experiments. And I just HATE to waste time. What is the point of doing something if you are just going to come to the same conclusion, all over again? I've done that, in the last few months, over and over again, while I was checking everything. And I think that I've covered it all, quite frankly.

The fact is, I really, really like puzzles. And this is like solving a big puzzle, and having nothing else to turn your mind to.

What am I going to do with myself?

Melanie

if you're still alive, your mission is not complete.

You have been amazingly directed. Your growth has been forward and focussed. In the book "Zen and the Art of Motorcycle Maintenance," the main character talks about two kinds of growth. There is directed growth, and there is sideways growth. You can't control it. You just have to allow yourself to hang, and look around at things, and play at things. This will probably feel aimless to you, and it will look aimless to many people, but in reality you are making connections and learning new and different things. I suspect you're about to embark on one of these periods of sideways growth. Don't let yourself get frustrated. Hang, enjoy, learn something different, open up, and wait for wisdom to come.

And, read "Zen and the Art of Motorcycle Maintenance." It's very useful guide to life.

Here's a hug :hug: for all you have done and been through. You sound incredibly strong. I have no doubt that you will find your way. Let yourself make the sideways connections and drift for a bit, without pressure. Your new mission will make itself apparent.

Namaste.

Okay. I will "hang." Geez.

I am not sure that I am strong at all. I have heard that from many people, but I don't see myself that way at all.

I suppose that I just want to work on another disease. I don't want all that I have learned, and have worked VERY hard to learn, to go to waste.

You know, there is absolutely NO disease that is currently attributed to an INCREASE, or a surplus, of antioxidants, other than cystic fibrosis. It is the first of it's kind. I am sure that it will not be the last of it's kind, though. It is only because we do not understand the relationship between humoral and cell-mediated immunity, that we do not attribute an imbalance in these factors to most immune diseases, today.

I am not sure what I want to do next, but I do know that I want to learn more about these types of immunity, and the types of diseases that an imbalance in them leads to. I don't think that modern medical research has explored this realm very much. We are still so very focused on the positive side of anti-oxidants. I think that our understanding is very primitive.

Anyway...I will "coast" for a while. As long as I am able to, without going crazy. Hopefully, something will present itself.

It has been my experience that it is best to wait for things to present themselves, than to take things into your own hands.

As you might imagine, though, for someone like myself, it is difficult to wait....

And, quite frankly, what I have done is big enough that I expect to be killed in an auto accident soon.

I mean, come on, how many purposes does one person have in this life?

Melanie

you don't have to stop working. Read around in the general area you have already been working in. Maybe something else will pique your interest, or you might begin to see how what you have done will already apply to something else. Just think horizontal not straight ahead for a while. Let your knowledge branch out.

Like you said, there may be another disease out there you can work on.

Or perhaps you can start thinking of ways to make this passion of yours a full-time job, where you would have time and resources to really pursue it.

The world needs passionate, dedicated, hard working, intelligent people. We have enough of the other kind. A new purpose will begin to gel for you if you relax and let it gel. :hug:

You're right. Absolutely. God knows, I have engendered enough money to pay for anything that I want to study. It is only a matter of asking for it. And I have shown myself competent enough to deserve it.

If only I can figure out what it is.

Gel. Let it gel. I think that it has already done that. I am interested in the immunomodulatory effects of antioxidants. I am intersted in Th-1 type immunity and it's balance with Th-2 type immunity. There are so many diseases that this is central to. So many things that I can lend my hand to.

I hope that my group will help me.

Melanie