And finally… a new one: Tell me what you want, what you really really want

This is one of those blog posts where I worry that you will all think I’m crazy. But then I remember: I have ALS… time to stop worrying about what people think. More importantly, you don’t deserve that kind of suspicion. Sorry. And here we go.

My chances of healing are… slim. I’m not talking about coping with this situation, but actual healing, things improving to a point of being able to live independently. I have no hope of conventional medicine achieving that. The way conventional medicine is handling neurological diseases in general is not encouraging. And even if someone had a genius idea today, it would take several years for a treatment to become widely available and I do not have that kind of time. So basically my best bet is a miracle. And I want that more than anything else, right? Of course! Well… oh… hang on… I am not so sure.

Here is the thing… actually, here are two things:
You know how on Facebook every now and again there are these jokes about growing up? Things like “Do not grow up, it is a trap.” or “That horrifying moment when you are looking for an adult and realize you are an adult…”. I totally relate, maybe a little too much… I did not like being a grown-up. In fact, I think I avoided it as long I could by traveling and living in Chicago and Japan. I was kind of grown-up, of course, I worked and paid my rent and bills and medical insurance and… that was it. No liability insurance, no disability insurance, no retirement plan… no worries! It was wonderful! And I am so grateful I had that time, and even more grateful nothing horrible happened. But then I moved back to Berlin and… started a business. And grew up. And how. Responsibilities, all kinds of insurance (thank God and Goddess!), taxes(!)… I hated it, really did. And notice how I talk about being grown up in the past tense? That is on purpose. I know, technically I am still grown up but it does not feel like that anymore. Which at times can be infuriating but most of the time… I kind of enjoy it. I cannot believe I am saying this but there you go. No taxes, back to insurance basics, no work but regular income from my disability insurance, I do not even have to pay rent… And just imagine, if I were to fully heal and recover… not only would this whole being-grown-up-business start all over again but it would be even harder: explaining it to my medical and disability insurance, finding an affordable apartment in Berlin, starting my retirement plan all over again at the age of over 40… What a nightmare! I know, considering the alternative, I cannot believe I am saying that either. But there you go again, that is what is going in this crazy head of mine and what is the point if I am not honest?

But the really big thing is this: Why me? Why should I get a miracle when so many others have not? And how would I live afterwards? How could I make sure I deserved this? Could I ever be a good enough person?

This is not about the possibility of a miracle. I have just been thinking about whether I truly want one. And whether I could handle one. And I am wondering if miracles can happen to people who are not even sure they want them.

And… what exactly is it that I want, that I really really want?

Can I get back to you?