we all do that. we carve our order by leaving the disorderly parts out. our mind is limited in its ability to comprehend.
Yet, we have to be aware of doing that and gradually put back those missing pieces or else we may end up having a partial and even distorted picture.

Think about it: in a 10 minute period one cell in our body is more busy than a very large factory. Numerous changes occur each femtosecond. And this is only one cell. Think of the complex orchestration required to co-ordinate the function of numerous cells in one organ and then the cross-talk between those organs and finally the rapid response to changes in the outside environment.

Our understanding of those complex biological systems is truly amazing and our ability to change and control some of them is even more so. But, should it come as a surprise that there is so much we still don't understand and don't know?

Modern medicine and modern society have given us the illusion that we can understand and control those processes. We can do better than nature. But the reality is that we are part of nature and we can't do better. We can utilize nature for our needs (and this too has to be done cautiously), but we can't improve it.

This is somewhat philosophical, but what my illness has taught me is that we have limited reserves. If we use them wisely, they can last longer and enable us to do what we want. This is true not only for us and our body, but for the entire human population.

A superficial understanding and trying to use our reserves in the (supposedly) most efficient way, can eventually lead to the exact opposite.

I don't think we should stop searching or stop trying to gain a better understanding. But, I think we should be humble and realize that we only have the tip of a very large ice-berg, even if we think we have found all the answers.

Many times I ask my neurologist questions. Many times he doesn't have an answer. But, this in itself is an answer. I feel much better knowing that he too doesn't know. If he has seen numerous MG patients and doesn't know the answer, how am I expected to know? If he can't find treatment which will control my illness and change its course, how can I be expected to do so?

He keeps on telling me that MG (and even more so MuSK) is the most unusual, hard to understand, crazy disease. I keep on telling him that this is because they know so little about it and every illness would appear so if it was so poorly understood. But practically,we are both saying the same thing.

I have a research collaborator who suffers from an illness in my realm of practice. A while ago I shared my frustrations with him. I told him that in his illness there are thousands of clinical trials and a lot of research, whereas in my illness there is none.

He said-that may be true, but do you fully understand my illness and do you have a cure for it? I had to admit that with all our understanding and novel treatments we really don't yet. The more we learn and understand the more we realize how little we truly know.

It is hard to accept the fact that we have an illness in which many people fully recover and can lead a completely normal life and yet we don't. It makes us feel that maybe we are missing some important clue which could be the ultimate answer. It makes us inevitably think that maybe we or our physicians are not trying hard enough.

But, first, we don't have the same illness, even if it has a similar name. Second, there is no disease in which everyone responds to treatment and everyone is cured, because even if we don't yet know how to recognize them there are subtle differences among patients with the seemingly same disease.

We are fortunate that our illness doesn't lead to immediate death and that despite its disabling symptoms, we can find ways to work around them.
we can occasionally find a certain trigger we can avoid, we can find better symptomatic treatment and supportive care and all those can significantly improve our life.

But, with that we have to accept the reality and realize that its not because we are missing something relatively simple (because with our relentless searching we would have found it by now) or because we (or others) are not doing enough.