This blog is my record of my journey with my son who had a rare, and eventually fatal metabolic illness. It is the story of the last year and a half of his life, his death, and after. I have shared this journey this in the hopes that is will not only help me come to terms with the realities, but also that someone along the way may find it helpful, as they face a similar journey.

This is my place to comment on events, blow off steam, encourage myself (and maybe you), share frustrations, show my love, grieve my losses, express my hopes, and if I am lucky, maybe figure out some of this crazy place we call life on earth.

The content might sometimes get a little heavy. As an understatement..


People who are grieving may write sad or difficult things and bring you down. This blog may not be for the faint of stomach or of heart. Read with caution and at your own risk.

If you are new to this blog, I suggest reading it from oldest to newest. It isn't necessary, as what I write is complete in itself. But this blog is sort of the result of the "journey" I'm going on, and I think it sort of "flows" better from oldest to newest.

I do hope that in the end you will find, in spite of all the difficult and heartbreaking things, things that are worth contemplating.

Welcome along!

Friday, October 15, 2010

The Dreaded Questions

Ok, take everything I say from this point on with a grain of salt. Yes, starting now, go get your biggest salt shaker and start liberally sprinkling. I'm NOT writing it to make anyone feel bad. There are two questions I hate, and it's not any one's fault for asking them. Because I don't know how else people could be friendly without using them.

I hate being asked "How are you?" And I hate being asked "How is Joel?" Sounds unreasonable, no? I mean, what is a normal person supposed to say who genuinely cares and wants to know. And believe me, I appreciate people who care enough to ask these questions. I'm not sure how they can get the information they want and deserve any other way.

Still, I find them questions that require me to draw in a deep breath. When someone asks how Joel is, it's really hard to answer. Because I'm not sure I know. I mean, it is really hard to assess, generally, how he is. I can say that he's having a good day. I can say that he's having a bad day. Or maybe even make that week, or month. But I'm not really sure at any given time how he IS. I mean, the disease is degenerative. And we have already seen that he is no longer making much by way of advance, things seem a bit heavier in the decline area.

So I'm not sure if they are asking me if he is feeling happy on that particular day. Or if they are asking if there have been any big changes in his health. Are they asking me if I think he's in a stage of decline? Are they asking me for an idea of if he is in the "final stages" of life? Seriously, I don't know. I mean, I'm not sure that I know what you are asking, and I'm not sure if I would know the answer even if I understood the question.

I'd really like to answer your questions about Joel. It's just that asking how he is doing is too general for me. I think people likely like the question for that very reason. Maybe that way they think they are leaving it open for me to tell them as much or as little as I'd like. Personally, I'd just prefer a more specific question. Is Joel having a happy day? Has he been smiling today? Does his health seem stable right now? Any new health concerns? This are all questions I feel that I can answer. But don't feel badly if you don't remember to ask them, or if you are just going to keep asking how Joel is. I know. I understand why you are asking. And I very much appreciate the WHY part of your asking. I just don't understand what you want to know, so if you get a long rambling, confusing answer, or a short brief "good," you know why. I'm confused. :)

And the other question I hate is "How are you doing?" I think I have a better idea of what the answer to the question is, as far as I can assess my own mental, emotional, and physical state much more easily than that of Joel at any given time. But once again, the question is a bit vague. I'm not always sure what the person really wants to know. Are you asking how I'm FEELING, as in my emotional state? Are you asking how I'm COPING, as in am I still keeping my head about water, or am I about to drowned? Is it more like "What have you been up to lately?" Are you asking me how hard it feels right now? (somewhere between a bit tough, somewhat difficult, really hard, and I'm clawing my way up a mountain) Are you asking me if my day has had happy moments?(most days, yes) Are you asking if I'm depressed? (not clinically, but my child is dying so I'm sure sometimes I get a bit down) Are you asking if I have cried today? (yes. I cry at least once every day, but it ranges between a few silent tears all the way up to full out night time or shower time sobbing)

You see, I'm just not sure where to start with that question. I hate to just say "fine." What does that even mean, other than I'm just giving a polite answer? On the other hand, if you are truly asking if I'm about to go nuts, then most days I'd have to say I AM doing fine. By which I mean, no, I'm not having a breakdown today.

I think I might have to implement the good ole scale from one to ten. And then make you qualify it by asking if you what a physical, emotional, mental, or spiritual assessment. So, here is how my scale works. One is the worst and the bottom. Ten is the best, at the top.

So I can tell you that today, emotionally I was at about an 8. It was a good day. Joel was happy and several friends came over for visits. Nothing bad happened. Physically, I would be more like a 5, because I've been pretty tired and I have a cold. Mentally, I think I would also be a 7 or so. I managed my day ok, and my thought life was not unduly morbid or stressful. And spiritually, you also caught me on a good day. I'd say an 8. Because I had a good talk with God. You see? (You really did catch me on a pretty good day. They are not all this good. ;) )That means something, huh? Much more than if I just say "fine?"

Plus, for some reason it is easier to give a number. How am I involves so many things that I am. I mean, in any given day at any given time I might be angry, depressed, happy, confused, wistful, annoyed, sad, ... you get the idea? And it could be a percentage. Like 10% depressed, 20% happy, 30 % sad, and 40% confused (of course, confused, who wouldn't be, feeling so many different things!) It's much easier to give you an averaged number based on the balance of positive and negative emotions, with 5 being a median line.

So, if you ask me how I am doing, you'll understand if I take a deep breath and then just say "ok." It really means I'm doing ok. But if you would like some better information, you just have to get a bit more specific. You can ask, scale of one to ten, how am I feeling emotionally? Or how am I doing spiritually? I promise I will give the number value that best approximates my current state.

I hope you understand I'm writing this in good humour and love. I appreciate people who take the time to talk with me. I'm just trying to let you know why it often seems, when you ask me a simple question, why I'm just floundering around in confusion. I really am. That. Confused. Scale of one to ten, how confused am I? Hmmm. About a 9. ;)

1 comment:

  1. I always hated those same questions, for the same reasons. It is easier to answer a vague question with a vague answer!