The thin line

I walk a very thin line most days, but not intentionally. Life drew that line in the sand for me. Some days it grows thicker. Those are good days. Other days it appears as faint dots. Those days, I feel faded.

I have two major disabilities and one minor one. The minor one is profound deafness. Maybe it's a bigger disability than I realize. I notice I'm getting more and more frustrated lately with my hearing.

Probably because I want to hear Andre Rieu play. I hear him but I want to cry when I hear him. And I don't.

Multiple Sclerosis, the Multiple Screams Disease. I don't talk about it much here anymore.  I don't know why... you can only say my leg hurts, my vision is blurry, my bladder is spasming, my chest is being squeezed by a python from Florida so many times before everyone is bored. 

No, that's not why. It's baggage.

Four years ago I was falling all the time. Falling down the stairs. Falling off the patio. Falling on the sidewalk. Yes Sherry, we know you fell. We see the skinned knees and wrists. At that time, support was crapulous. 

I don't think people realize when adults fall it is more painful than when children fall. And, we're not supposed to cry. HA.

Now I never fall and I don't use a cane.  My "falling problem" went away when I got off Betaseron, the interfering with my life interferon drug.

Instead I have other MS problems which is fine with me because goodie, I qualify for Medicaid.  =p  =p  =p 

When Nicole died, MS became my forgotten enemy but it didn't forget about me. 

I don't fight MS anymore, it's gonna do what it wants to do and I'm along for the ride so let's go, but not too fast.

Whatever, MS. I'm busy grieving Nicole and seeking symptom relief only.  That's all that's really available, right?  "Disease Modifying Drugs" or DMD's - we do not want to cure MS, just manage it!

Doctors go uh-huh, uh-huh, nod, nod, uh-huh, uh-huh, nod, nod and still look confused even though MS is known to be a baffling disease. "Have you tried xyz" (insert name of script you have tried about four hundred and thirty-nine times) and you just want to jump up and yell something very Mark Twain-ish.

If they look confused why offer a script?  Plus Medicaid doesn't like to pay for a lot of pain relief so the first question I ask is "is it covered under Medicaid" and usually they do not know.

The default answer is no it is not covered.

I should say - I do love my Neuro. I have a slight Neuro crush on him and I ne-vah crush on Neuros. Ne-vah. They generally piss me off to the power of ten. I see him in March. Not soon enough.

Grief is disabling. Mourning is not. Mourning is what I feel for my dad, my grandmother - they died when it was time to. Mourning is missing people, grieving is incapacitating.

Grief envelopes you. Crushes. Terrifies. I remember one night laying in bed thinking I would die. Felt the weight of an elephant on my chest, could not get any air - was it the MS Hug or was it grief?  I did not know. I still don't know.

I want to talk about Nicole. Again. And again. And again. Because I do often.  Even if it bores the walls.

I can't keep talking about her/grief in real life, it wears people out.

Think about it:  If you have MS,  how many times can you say "The elephant in the room sat on my chest" or "electric shocks zapped me when I coughed?"  Right.

How many times can I say I really want my daughter to return magically to life? That her death from alcoholism was a nightmare... let me wake up, oh please? 

The woman in the mirror does not feel or look like me but it is me, living single with MS and the death of my daughter Nicole so blahhhhhhhh.

From Parker Lanier