Dealing with it

Ok, now that I've spilled my guts finally in public blogform about my latest news, I have decided that I will try to talk about what I am doing about it here, too.

In the real world, few of my friends and even fewer acquaintances have any idea about my recent diagnosis with macular degeneration. I don't know how to abbreviate this, because the MD acronym belongs to muscular dystrophy already, and the technical term for what I have is usually age-related macular degeneration, or ARMD. Since I fall outside the real parameters of it being age-related, I am going to christen this little speed bump in the road of my life MacDee, for my own purposes. Beats spelling it out every time. Besides, McDonald's already has Mickey D, and they would sue me if I used that.

Last year, about this time, I was at a county fair when some gentleman thrust a little credit card sized magnifier with advertising on it into my hand. I made a little fun to a few people about what it said on it: Promoting Independence, State Division of Services for the Blind. That wasn't funny, but I thought it was odd that it would also have a TDD number for the Deaf listed on it. That little bit of sport has come back to haunt me.

I had the thing in my purse, because it really is handy for telephone books and roadmaps which can be infinitessimally small. I dragged it out yesterday, and decided to call the toll-free number and see what sort of advice they could give me for the future. I dialed the number, but I hung up the phone. I couldn't find any words. I was...embarrassed. Maybe that's not the right word. I just didn't know how to ask or what to ask.

So I copped out and went online. There it was, Arkansas State Services for the Blind. Ok, now what. Look at the "qualifications" section. Here's where it gets tricky. I don't fit the first two categories, and the third is iffy. That says that you have rapidly deteriorating eyesight. How quick is "rapid"? It's all so confusing. What am I doing here? Are they going to disqualify me for not being "blind enough" yet? When do I reach that point? Do I have to wait until I can't read the print on the page to ask for some assistance?

I take a deep breath and fill in the form for consultation. All they can do is tell me no, right? I get down to the comments section and try to decide how to phrase this. I just lay it out there: "I have recently been diagnosed with macular degeneration, and I need to know what questions to ask and to whom I should be asking." That was it. How hard was that? I hit send.

~~~

I worked all day today packing quilt patterns to ship out to my vendors. I took a couple of phone calls that led to new clients to sell my patterns. With the packing finally done, I drove out to UPS to drop off the box to Keepsake Quilting, the catalog people who sell my patterns internationally. Swinging back around through town to my mailbox, which was empty, I drove into Taco Hell and picked up a kid's meal for myself. Two tacos and the crunchy cinnamon twisty thingies and a small Dr. Pepper. Cheap eatin' and I'm sick of ramen noodles. Tomorrow the eagle shits and I get paid. I hand the cashier my pocket change that I dredged up from the couch cushions and the car seats and drive away happy with the fragrance of the tacos tempting me from that brightly colored kid's meal bag.

My landlord is next door when I drive in and I think about how this looks...me carrying in tacos when I have asked him to let me pay partial rent during the verrrrrrry lean month of August. He's a wonderful guy, so he waves, and if he thought anything about it, it sure didn't show. But it makes me ashamed anyway.

I walk in my front door to be greeted by the cats, and find the caller ID blinking. It reads "AR STATE", and a local number, and there is a message waiting. I dial the message number, and it's a man from the State Services for the Blind. It's after 5:30 PM, so I don't return the call. Wow...was that fast. I am used to dealing with the veteran's affairs, and you are lucky to ever get a callback.

I will call him in the morning. I don't know what I will say, but I suppose it will come to me. Stay tuned.

Good news/bad news

Today is my birthday. I am getting past middle age now. My crisis, however, is just beginning.

Yesterday, I went to the ophthalmologist at the Veteran’s Hospital in Memphis. I wanted a second opinion, or a confirmation, or whatever on news I had been given a few months ago.

It started late one night with a bright flash in front of me like a photographer’s strobe. I panicked and rushed myself to the ER, thinking I might be having a stroke. Good news was that wasn’t it, but the bad news was I needed to see my eye doctor immediately.

A sleepless night and several expensive tests later, I was told that I might have macular degeneration in its earliest stages. Oh great. Nine years ago, the same doctor told me that I had early onset cataracts. I am one lucky person.

Dr. Kelly at the VA was thorough in the exams, and began to question me about family eye history. The only thing I knew to tell him about my dad was that he was not drafted in World War II because his eyes were so bad. He died almost 40 years ago, so I don’t remember much else. Must have been pretty bad to be rejected for that war.

The doctor did all the usual shine the bright light stuff to me, giving me a considerable migraine. He asked a few more questions, saying he wanted to confer with his superior. A few minutes later, she came in and ran that set of tests all over again. She commented that my cataract surgery was a “beautiful job”. Then she sat down. Uh oh.

She said she wished she had better news for me. Yes, you have macular degeneration. Worse in the left eye. Good news: you won’t go COMPLETELY blind, because most people retain some peripheral vision (Yippee.) Bad news: we can’t tell you how long before it gets really bad, and the type you have can neither be corrected nor stopped. (Boo.)

After that, they said little, waiting I suppose for me to break into uncontrollable sobbing. I didn’t. I just wanted to know if I would get any sort of assistance dealing with this when the time was deemed appropriate. My biggest fear is having no mobility training or assistive devices. I’m not going to crawl into a hole somewhere and die. It’s not the end of the freaking world. Adapt, adjust, and get the hell on with it.

Like a story one of my nurses told me once when I was in Intensive Care: A little kid asks his father for a pony. His father tells him to go out to the barn and clean out the stalls. A little friend comes by and asks what he is doing. The boy, shoveling furiously, replies, “With all this shit in here, there’s bound to be a pony in here someplace.”

I’ll find that pony yet. After all, it’s my birthday.

Little Shooters

No, not talking about shots of tequila, although in this dry county today, that might be nice with a little salt and lime.

Instead, this is about something that is one of those events in a person's life where you know exactly what you were doing when it happened. March of 1998, I was sitting at the computer in the local quilt shop, surfing the web, because I didn't have internet service at home yet. (Imagine that.) The talk radio was on, and I was mostly ignoring it because I am not a fan of Rush Limburger. Suddenly there was something that was breaking news, and Rush announced that there had been a shooting at a school...in Jonesboro, Arkansas.

I immediately pulled up the local ABC affiliate's website, and there it was, breaking news that someone had fired shots into a crowd of students outside the Westside Middle School. Police had two suspects in custody. Ambulances were on the way to the scene. This town, our lives, would never be the same. Talk about the end of the innocence, this was it.

We were all stunned, sitting in silence where moments before there had been the cacophony of the modern day quilting bee. We tuned to a local station, and the details began to flesh out the horror. Five dead, many wounded. Four young girls and a teacher. A fire alarm had been pulled, and the entire school had filed outside according to the protocol, and two shooters with deer rifles had picked them off as they came outside. Then the most chilling part of all: the shooters were students at the same school, one 11 and one 13, using rifles stolen from the 11 year old mastermind's grandfather's hunting rifle locker. They had stolen a van, and were going to flee in it, but were apprehended in the woods near the school.

Eleven year old Andrew Golden and thirteen year old Mitchell Johnson had sneaked away from home and gotten the weapons and the van, hid in a nearby wooded area, and waited for the time. Golden ran into the building just after lunch and pulled the fire alarm. He rejoined Johnson, and the two of them began firing at the unsuspecting students and teachers.

I've often wondered what went through the minds of these young boys as they were firing and killing people. Did they think this was sport? Was it just a "video game" to them? Did they have no idea that death is permanent? That you can't say GAME OVER and nothing is the worse for wear? What possessed them to even consider doing this?

Ok, why am I thinking about this now? Because yesterday, Mitchell Johnson turned twenty-one and he was released from prison. State laws cannot hold someone convicted of a crime as a juvenile past their twenty-first birthday. The law was actually amended because of this case from no detention past eighteen. So, today, Mitchell Johnson is a "free" MAN, no longer the weeping thirteen year old who asked for his mama in jail. No one knows if he has truly been released, or where he is headed. It is safe to say that he will not return to this neck of the woods.

Andrew Golden will be released in 2007 when he turns twenty-one.

I just wonder if this is a good thing that they get a clean slate and a fresh start. One part of me says maybe it is because of the Christian concept of forgiveness. But more of me tends to think about the five lives cut short by their callous and calculated juvenile "mischief". Once a sociopath...?

~~~

Not much is being said locally about all this. Hopefully it manages to get past the media circus that surrounded this town. For weeks, there were cable news crews and satellite trucks invading us. A year later, on the anniversary, they were back camped on the town steps. Somehow, a reporter from CNN found his way to the quilt shop where I was trying to piece together some quilt blocks to send to the victims of yet another shooting. He interviewed me while I was sewing. Fortunately (for most), my "news feature on CNN" was pre-empted by the news that the US had invaded Bosnia. Ted Koppel himself did a live town meeting from here. He ambushed the families of the victims, by bringing the mother of one of the shooters in through the back door and putting her on the spot in front of them. Yellow journalism, anyone?

All I could do then, was tie a white ribbon on my mailbox. I thought about putting another one out, but it would not do any more good than it did then.

My thoughts are with the families of the victims, and those who recovered from the physical wounds of the event. My prayers are that these two individuals will truly be "reformed" in mind and spirit, and that the remainder of their lives will be put to some good use, since they were spared further incarceration. Heaven help them.