Wednesday, January 2, 2013

Normies Don't Get It

The other day I was attempting to help out in the kitchen.  I rinsed a few dishes and put them in the dishwasher, and then all the sudden my back locked up like Fort Knox.  Stupid back.  Mom saw it happen, and she shooed me away from the sink.

At this point, I made a mistake.  I opened my mouth.  "Someday," I said, "I'm going to have my dream house, where everything is set up so that I can sit down to do the dishes or work at the stove."

"NO," Mom said.  "Someday you will be better, and you won't need that stuff."


I've been at this chronic disease thing for five and a half years now.  A drop in the bucket compared to some, and really just the start, since I will be dealing with this stuff in some form for the whole rest of my life. That's what chronic means.  It's not going away.

In the really early days, I still believed that every new med was The One.  The medication that was going to Fix me.  The medication that would make me Healthy and Normal again.  They've all had some effect.  But none of them transported me back to the land of the healthy.  I haven't had another near-death crisis, for which I am endlessly thankful, but I haven't had more than a scattered handful of truly good days since early 2007, either.

After a while, after some hits and misses, some brief bouts of improvement and really miserable side effects, you learn not to hope too hard.  I mean, you always have to hope.  If you can't hope at all you might as well lay down and die.  (And perhaps consider getting a referral and some anti-depressants.  No shame.  An awful lot of us in the chronic community need that kind of help.  Constant illness is depressing as fuck.)  This next drug is based on a different treatment pathway.  Maybe it will be the one that makes a difference.  Someone I know tried this kind of alternative treatment, and they saw improvements in these areas.  Maybe I'll try that too, when I scrape up the money.  See?  Hope.

But it's a cautious hope.  A hope that doesn't put all it's eggs in one basket.  A hope that never asks for too much.  Not a normal life.  Not to be able to work again, or go out with friends, to travel regularly, or to be able to do my own damn dishes all in one go without having to sit down and take a break for a while.

I know Mom was trying to be helpful.  But by rejecting my reasonable hope-- a hope that someday I'd live in a house that worked around my needs, rather than me struggling to work with what's there-- she squashed me pretty flat.  Her hope was too big, too militant, too unrealistic.  She still hopes that someday the magic pill will come, and I'll be able to live just like everyone else.  I've tried all but two medications currently on the market for my disease.  I'd say there's a reasonable chance that I'll be trying one of those two before the year is out.  The other one is strictly monitored by the FDA, because one of it's "side effects" is brain eating fungus.  I don't think my magic pill is coming any time soon.

So I keep my hopes small.  More days where I don't hurt too bad.  Less time in the bathroom.  More energy.  The chance to push my life out past these four walls.  I can't hope as big as my mother does for me.  The fall would kill me just as surely as my disease would, if given the chance.


  1. *hugs*

    Normal, healthy people really don't get it. I've had severe chronic asthma for years and my family still doesn't get it. It's a different mindset, a different way of thinking. Your mom means well but she can't truly understand your physical problems nor your emotional needs. Baby steps are all we can do some days.

  2. I had a therapist once who tried to get me to "hope big". She pushed so hard that I had the only panic/terror attack in have ever had in therapy. Full on fetal position terror. Hope is f-ingredients dangerous when you are dealing with ongoing ick, whether it is medical or situational.

  3. When I read this, for some reason, maybe because I'm dealing with teen-age angst and pain right now that I can't fix, I identified with your mother. There is nothing more painful than watching your child hurt and not being able to help or to fix it. I would perform open heart surgery on myself if it would help my kids. Really. What she is doing is hoping desperately that someday, somehow, you will be healthy and able to do anything. If she admits to your limitations, it feels like she is giving in and giving up hope. And I promise you, we can hope far more desperately with far less to hold on to for our children than we can for ourselves. So while some of her unwillingness to accept limitations for you may come from the inability for a "norm" to understand what living with a chronic illness is, it very well may be more a mother's desire for her child to be well and healthy. From your perspective, this may not be particularly helpful or it may even be the opposite of helpful. I don't know. I do know that it is rare for someone to really "get it" about someone else's chronic problem - whether it is physical, mental or emotional - unless they have been in those shoes. The closest they can come is a willingness to try to understand and an ability to relate it to problems that they have had. We all have limitations, one way or another, and we all need to try to be understanding and gentle with each other. And now I'm lecturing. Sorry.

  4. When we have our Big Time Meet Up, I'll hug you, gently, because you are so tremendously special to me. But I have to repeat, or echo, what Karen said above. I went into major Mom mode when I read this. Babe, all we want for our kids (and that includes ones we didn't even give birth to) is for them to be happy and pain-free. We can hope hugely, well beyond your wildest dreams, we truly can.

    On the other hand, I have no clue how difficult this must be or what discomforts you must go through, so all I can offer is my unconditional support, love, and friendship (plus the added occasional conversations with my husband on the tweeties).

  5. I think it's an essential difference between being a Mom and being a person dealing with a disability. A Mom never stops hoping for the world for their children. A person with a disability has to learn to accept their limitations and shape their hopes and their world around what is possible based on those limitations.

    For me, the idea of having a home designed with my needs in mind seems just as much of a magical "someday" as the idea of me being totally well does to my mom. Both are just a dream at the moment, but the accessible housing can be done. Scientists are working on it, but really good, affordable, mild side effect meds aren't looking too promising in my lifetime.