Month: April 2014

I fell in a puddle this week.  It was very shallow yet very deep.

I could not fight my way all the to the surface.

I swam and swam and barely got my nose out to breathe.

Still, my eyes have been covered in the water, brackish and stale.

I am attracting bugs: mosquito larva are my only friends here.

I don’t want to stay here so I swim and and I swim.

How can there be an undertow in a puddle?

What is it I am fighting so hard?

There is more here than meets the eye, so to speak.

If I let myself sink any deeper into this puddle I am aware of its deception;

It is really a whirlpool.

It has layers upon layers of dangerous suction and it wants to pull me down to its depths: to eat me up.

I could, though, just relax into it and stop trying.  Maybe at the bottom there would be mermaids who would crown me with garlands and welcome me softly to their watery realms.

Probably not.

More likely they would be fanged harpys; biting me and strangling me with their boughs of seaweed.

I cannot relax here in this puddle.

I must keep my nose up until I can push myself back out.

I’ll not become fodder for baby insects nor swept away by the currents of my own dark imagination.

I will look up to the sunshine and swim hard towards the light.

 

We did it!!!!! I managed to do an entire Passover seder and many parts meal .

I invited cool people we never get to see. Our friends have a daughter with special needs. She is the same age as Samuel but is very fragile due to severe Epilepsy and breathing issues. She is in and out of the hospital a lot and has to be watched all night to make sure her oxygen levels stay OK and that she does not start to have a seizure.

This little girl is so lucky. She has two beautiful moms. There are  nurses that are supposed to be professional who   are hired to come to their home at night to care for her so they can rest before going to work. They never stay on the job. It’s too scary..

So our friends, take turns not sleeping but standing over this beautiful child all night.

How do they do it?

I dont know.  You do what you have to do . I sit in ER so many nights.

 

They have four kids in college as well.

Grace in action is what I see.

I saw beauty watching their family tonight. I was so honored to have them at my table.

Shabbat Shalom indeed!

I refuse to accept the disability label.  It pisses me off.  It makes me want to curse, a lot.  When I had to apply for Social Security Disability I did not even let the D word into my mind.  I just knew I had to get the money so I could take a break from teaching. It was a harrowing, upsetting process.  I won on the first time around.  I remember thinking, “oh, I must be really sick.”

As time has gone on and medical crises have waxed and waned, I have still never put myself in the category of, “disabled.”  To me, that word means you can’t walk or you can’t see or you can’t hear.  Even though, if you ask me outright I will tell you the proper term for those things is, “differently abled.”  I believe that.  I really do: But now, back to me and closer to home, so to speak.  I realize my family and some of my friends increasingly see me as disabled.  And as a result, they treat me differently.

The changes are slow, almost imperceptible, especially when you don’t want to see them.  My husband is always asking me, “Did you do too much?” or “Why did you do that?”  I appreciate his concern but his understanding of what wears me out and when is pretty off base.  It’s ok.  He doesn’t mean it.  How in the world could he know me better than myself?  Nah.. that can’t be true.

I even notice my kids getting in on the act. That is nothing compared to the people who just don’t talk to me anymore.  It is like I am toxic.  I guess I am.  I am not much fun.

BUT I AM NOT FUCKING DISABLED.

My therapist, who has just retired (shit, shit, shit) ran a group called “Adults with a disability” for like thirteen years.  She invited me and I visited a few times. It was scary.  I didn’t like the fact that it hit so close to home.  I kept telling myself I didn’t belong with ‘those’ people. I suppose a valid question to ask would be,
“Who do I belong with?”

No one and nowhere: I am in a no man’s land of chronic illness and I don’t know the way out. I keep thinking I have it all under control and then the next thing hits.

I am a mom.  I am a wife. Those are the two roles I cannot let slide.  I try to do them above all.  I also try to write.  Writing is part of being for me. I am a musician and I am not making music now and that hurts.  Writing is the only way to let the artist stuff out.

I am, despite it all, a person of faith.  That faith has morphed and changed shape drastically, and I want to pursue new avenues.  But, for now, I don’t seem capable of getting too far past my own door and the demands of my family and my life.  I am trying to be patient.  Before I know it, my youngest (8^th grade) will be out the door, and I will have a lot of time on my hands.

So, am I disabled?

I don’t know.

Maybe a better answer is; I don’t care.  Labels are not particularly useful.  I think I will not worry about them.  After all, I have never been one for labels. I don’t like race labels and I don’t like sexuality labels.  It is all fluid.  That is how I see everything… shades of gray.  I suppose there are days when I am disabled.  But there are many more where I am not.  I am unstoppable because I choose to get up and get out the door despite the pain and despite the fatigue and despite whatever else is bothering my physical body.  I am my own boss.

So, fuck the labels.  I can choose my own future.  If that is at all true, I am not done yet.  Don’t count me out.

 

 

 

 

 

These last few months have been particularly isolating.  I was/ am a very social person; an extrovert.

I used to get my social jollies out by teaching and interacting with my colleagues at the University.  So, even if we did not get together with friends or go out much at home, it didn’t really matter.

My husband is an introvert supreme.  Working in a team based,office environment all week is exhausting for him.  He does a great job of being social in that setting  but on the weekend he really needs to detox.

Since I became chronically ill, many things have changed, obviously.  One of those is any pretense whatsoever at a social life.

I no longer teach and most weeks I seem to just survive kid care and animals.  On the weekends, we recoup, try to reconnect and do chores.  We sometimes go out to eat or go to a movie but that is about it.  We do a lot of driving around and dropping off kids and picking up kids, which is fine.

I know that if I want any of this to change I have to do it for myself.  Yet, I seem to not make the effort.  Whenever push comes to shove, I spend what time and energy I do have with my husband.  I feel like my energy needs to go to that relationship.

But I have to say, it does get mighty lonely.

I used to call my dad every day when he was alive.  After his death in 1994, I called mom every day.  She died in 2010.  I find that with both of them gone, I don’t have much of a sounding board.  I am the grown up.  I notice my daughter, a freshman in college, is starting to call me most days:)  It’s sweet.

I sometimes wish I had the kind of sister I could call all the time: I don’t.

I talk with my brother about once a week but it isn’t like, you know, girly talk.

So, why am I bitching?  I don’t know.  I just feel sort of isolated with my chronic crap.  I am sidelined.  I wonder if it will ever change.  Will my life be like this from here on out?

That thought sort of scares me.  I cannot imagine my life this way. I suppose it will change.  When my son graduates from high school in four years, there will be a huge new gap in my life.  Maybe, just maybe, I will get healthier.

I just need to get outside: outside of myself and outside of my life a bit.  The way to do that for me is to go out and be social.  I just have to get up the get go to do it.

OH well.  At least I am writing today!  That is something!