Are You Alone?

Health Activist Prompt:


I write about my health because… Reflect on why you write about your health for 15-20 minutes without stopping  (this is yesterday's post...I am cheating a little bit.  I will do today's post later on.)


I am no stranger to being a health activist.  You could say I was born into the role.  My sister has neurofibromatosis, a genetic disorder of the nervous system which causes tumors to form anywhere on the body at any time.  It also gives her learning issues.  As far back as I remember, my sister was "special" and "different."  I didn't have a problem with this; it just was.  In fact, I was drawn to people who were "different," and I had a lot of disabled friends when I was growing up.  I just remembered that everyone made fun of my sister and I hated that.  When I reached out to be the friend to the person with the disability, they were always just as amazing as everyone else.

It was no big shock to myself (or probably anyone else) that I chose to work with the disabled as a career.  What was a shock to me, though, was how badly they were treated by others.  This prompted me to become an even more fierce activist than before. I loved my work and truly respected the people I worked with and for.

So, you'd think that, when my own child showed signs of having a disability, that I'd fall right into the role of activist for her?

Well, Welcome To Holland...

It's not that I wasn't a good or fierce advocate for her; you can bet your ass I was.

I ran to the ends of the Earth for her.

I read everything on Autism and Asperger's that I could get my hands on (at that time there wasn't much).

My family kept telling me "there's nothing wrong with her."  "She's so smart"

(flash-forward 21 years later.  She's still smart, but I think I was right...)

Anyway, I was so alone.  Really, really ALONE.

After a while, I did find support groups, but my kid was never really like their kids.  I have a girl; most Asperger's kids are boys.  At autism support groups, there weren't too many Asperger's parents.  Yet.

And, to top it off, I was split from her father, who also seems to be somehow affected by Autism.

I did it, though.  But if that weren't enough...

I was dropped into another "country"

actually, it felt more like another planet.

When I became sick.

Because: a) I was with a partner who was not supportive (he was actually the opposite of supportive; and b) I couldn't even get an easy-to-understand disease.  no! I had to get some hard-to-diagnose, chronic illness like vestibular dysfunction, which we are not sure exactly why I have and I can't get rid of.

So now, 11+ years into this thing, I am currently stuck in the house, unable to drive, most of my friends don't  see me (thank God for the few who do), trying to do right by my family when I don't know day-to-day if I can stand up straight.

THIS is why I write.

Because otherwise I would explode.

(and so others know they aren't alone in Holland or in their corner of the Universe)

strength training and inner strength

so now my balance therapy has branched out.

when I go for my vestibular exercise, I get strength training.  it's way harder than I thought it would be.

I squat, I lift dumbbells, I use weight machines, I do resistance exercises.

I need this stuff.

I'm glad I made the decision to ask for this.  even when I am sore.

I'm also glad I made the decision to do this at the same place where I get my balance therapy, even though the orthopedist told me to go to a facility that specializes in arthritis.

fact is, I get dizzy when I work out.  so we have to deal with that.  the other place may or may not have been equipped for that.  besides, doesn't it make sense to have the same therapist track your progress?  and, since my neurologist is treating both my fibromyalgia and my vestibular dysfunction, he can prescribe as much physical therapy as I need.  not have me running all over the place.

when I'm lucky, I also get heat treatments, too.  I say "lucky" because only one therapist seems to give them to me.  not sure why.  I'm not the kind to ask for stuff like that.  I know I'm the patient, and it's my treatment, so I shouldn't feel that way.  but I do.  I feel that it is a luxury, like someone getting a poolside massage.  stupid, I know.

I feel this way about every aspect of my treatment lately...that I am on an extended vacation.  and I know why.

my girlfriend calls it, "people taking my inventory."  everybody does it.  I'm sick of it.  for example, my 9-year-old ASKING ME WHAT I DO ALL DAY!  (seriously??)

I've already mentioned my mom.  she goes in spurts. I'm just waiting til the next one.

I'm the worst offender, though.  because I know I'm not doing as much as I should.  as much as I want to be doing.  and then other people's criticisms ring in my ears and I'm paralyzed.  a self-fulfilling prophecy. I'm trying to work on it in talk therapy, but, until I come to some conclusion, health-wise, I don't know how far I will come.

it is hard for me to make a life for myself at home.  harder still when I get dizzy doing things that used to make me happy, like dancing, or taking long walks or driving.

I'm trying to push myself to do the things I used to do, because I'm unwilling to give up at 44 years old.  I used to live in a black hole.  I'll be damned if I'm falling back inside of there.

yes, for my kids, always for my kids, but for once, a tiny part of me says for ME, too.  (I can't tell you how my stomach churns when I think it...but I'm trying to believe it, anyway)

so, after I write this, I WILL get off the couch and practice SOMETHING.  some b's.  some squats.  play on the Wii.  I MUST motivate myself to move and, as much as I think I can't, I MUST move my head around.  I KNOW it will make me dizzy.  that is the point.  make myself a little dizzy each day and maybe I will be less dizzy someday...