A Deaf In the Family

"You have to deal with the fact that your life is your life." - Alex Hailey

These days, my hearing is crap. I can't hear worth a damn in crowded places, or even not so crowded places when there are multiple people talking. Background noise and music does me in, as well as phones and cell phones.

The phone thing is especially difficult as there are certain vocal ranges that are just impossible for me to understand. Women are more difficult on the cell phone as is my uncle, who has a rather deep voice. My friend Georges is impossible.

I hate, HATE, telling people about this. I feel like an idiot when I'm constantly asking people to repeat themselves. On the phone, I blame the phone or the connection. Sometimes, I fake a disconnection and just hang up, and email later.

There are certain people I've told. I try to explain it to friends and family but even they just don't get it. Case in point, last weekend I was filming a short with my husband and some of our friends. One guy talks very softly. I missed about 80% of what he said. I felt like everyone was whispering and trying to cut me out of conversations. Paranoia set in. I was sure that my husband was just ignoring me as I'd ask him questions and he'd walk away. He claims he was answering or did answer. There was so much going on I will never be sure. He has a habit in busy situation of sort of calling out answers as he's moving or talking to other people so he may have been answering me but I thought he was talking to someone else. He tends not to address people directly, as in, "Yes, Lor, we need to move everyone to the other location."

Basically, I'm saying that I'm embarrassed that I'm deaf.

But I'm not really deaf. My ears work, it's my head that doesn't. Ha! So I'm even marginalized there. Does a Central Auditory Processing problem count as deafness? Or hearing impairment? It's a puzzlement.

I often use captions when I watch movies now. The background music and other noises is sometimes too much, or the speakers have accents...whatever. It's just easier to do that then to keep messing with the volume or re-watching segments to catch the dialogue.

Next week I will follow up with my OVR counselor. So far, that little experiment has been perfectly useless. I should qualify for assistance but now that I'm not working I don't know whether or not they'll be interested in helping me. The hearing aid that works best for me is, naturally, the most expensive one. It's about $2500. I nearly fell over when the audiologist told me the price.

Even if I get it, I'm going to be frantic that I'll lose it or break it or something stupid. Really, I'm not the best person with small expensive objects. Things tend to go missing around me. (Ok, I lose them. Or put them somewhere safe - so safe that I don't find them for three years.)

As it stands, I will have to suffer through tomorrow night. There's a showing of the films at the gallery that sponsored the 48 hour film competition. I want to go, obviously. I wrote the script and I think we did a really great job on the project. The Quiet Talker will be there as well, so I've got soft conversation in a noisy group setting to look forward to. Yay! Part of me wishes that Crenshaw would subtly clue people in to what's going on with me so I don't have to announce to everyone that I'm deaf as a post. I'd do it for him. We kind of had a fight about that Sunday night. He was yelling at me because I didn't say anything; I was yelling at him because he should know that if I'm walking away and ignoring what he's saying I probably didn't hear it in the first place.

I shouldn't have to fight about this crap with the people in my family. I shouldn't have to fight about it with my husband. I shouldn't have to fight with OVR.

In the meantime, "Don't make fun of me. I can't hear you."

Healing 101

"When praying for healing, ask great things of God and expect great things from God. But let us seek for that healing that really matters, the healing of the heart, enabling us to trust God simply, face God honestly, and live triumphantly." - Arlo F. Newell

It goes without saying that there is a difference between "healing" and "curing". Right now there are so many issues surrounding me, they remind me of the green points on the mandala image at the left. They are everywhere. My own unresolved health issues, my issues (both physical and emotional) with fertility, the health of my family members, and my husband's recent diagnosis with ADD all compete for my attention. I feel helpless in the face of most of these points. I cannot hope to heal or cure my Grandmother, my husband or my uncle or mother. For that matter, there is precious little I can do for many of my own ailments. Ah, but that's not really true, if I'm honest. To that end, I've begun making some fairly important changes. My diet was definitely an area needing improvement and I have started down that path. I'm working on adding the movement part.

But so what? No one really wants to hear what I ate for breakfast, which, by the way, I can't even remember. Ah. I didn't eat breakfast. I was on my way to yet another doctor for blood tests. Fertility doc this time, and no good news to be had there. My official appointment is next week and I'm fairly certain he'll tell me that there's naught they can do and my eggs are bad and thank you very much for coming.

On top of everything else that I've lost in the past few years, the idea of not being able to have a child of my own feels like the final straw. Without that element, I'm afraid I don't have any set direction. It's just something I assumed would happen "when the time was right". Guess that time never got here. Or it did and.... well, never mind.

It's so strange. I don't tell this to many people and now I'm writing it here, telling anyone who wants to read it. I found out I was pregnant a month before the accident. I miscarried about two weeks before it happened. On one hand it was a blessing. I don't think I could have handled losing the pregnancy because some idiot decided to drink too much and run a red light. On the other hand, the accident was kind of a low blow after the stress and emotional upheaval of initially finding out I was pregnant and then losing it.

Blah blah blah. Plenty of people miscarry.

Yeah, I know.

Unfortunately, I probably can't get pregnant now. And I feel like crap about it. Maybe I should have done something different. Maybe it was because I was ambivalent at the time. Maybe. Maybe. Maybe.

None of it matters. All of it matters.

I was so ok with it then. I'd done a lot of soul searching when I found out. I struggled. I came to terms with the idea of being pregnant and being a parents and then.... gone. And then BAM! accident, injury, recovery, etc. And now... sorry, thanks for playing, no family for you.

Bah. On one hand it's probably best. I still struggle with chronic pain on a daily basis. Raising and infant and young child would be challenging, especially when I can barely lift anything over 10 pounds. I need sleep, it's critical for my functioning. Babies and sleep don't normally go hand in hand, at least not for the parents. I'm still trying to find a way to have a career that will allow me time and space to keep functioning and take care of all the things that allow me to function (doctor's appointments, therapy, sleep, etc.). Add a kid into that mix and I don't know what the outcome would be.

But still...

I feel like I'm missing something. I feel like I would be a good mom. I'm sad when I see so many people parenting badly, or ignoring their kids, or not treasuring them. I would like the opportunity to have that experience - to help someone shape their life and make their experience of growing up in this world special and meaningful.

And then I look around and see how awful we humans are. We are violent and petty and selfish and small, myself included. Then I think maybe it's ok or perhaps even preferable not to bring another human into the world.

But I wanted my family to continue. I'd always wanted to have a baby while Bill, my Grandmother's second husband was alive. He was definitely my adopted grandfather, although not officially. He loved babies and never really got to experience his own granddaughter or great grandchildren and I wished that I would have had a child while he was here. Now, facing the imminent demise of my Gram, I'm facing my own infertility. Not only will I not have a child in time to meet her and know her, I probably won't have a child.

Although she never pressured me to have children, I know the "family line" is important to her. At the moment I'm the end of that line, and I'm sure it saddens both of us.

For the past year or so, I've been praying that I would be able to have a child while she was still alive.

I don't know what to do with all this. Honestly, I've been feeling quite a bit sorry for myself. Watching my Gram go through her own process of dying, has led me to consider the fact that while she is passing away surrounded by family members who love and care for her, I will shuffle off my mortal coil alone. No one will bury me. No one will mourn me. No one will care. I'll be warehoused in a nursing home with strangers changing my diapers. I only hope I either die before that or that my TBI kicks in and I'm so far gone down dementia lane that I think it's the summer of 1985 and I'm having the time of my life at J.F.K. pool with my friends.

Yeah, that won't work either. 1985 wasn't really that good a year.

So what do I ask for now? What's my prayer? My intercession? For Gram to go gently into that good night? Sure. I hope to God she dies in her sleep. Her blood chemistry is so out of whack it could happen at any time. She could have a stroke, or, more likely a seizure or heart attack. Please, let her just drift off while she's asleep. Please. I don't want her scared. I don't want it to happen when I'm at class and my mom is at work and one of the caregivers is with her. If she's awake and aware, let one of us be with her. Let it be me. That's fine. It would probably be easier for me than my mom. I can talk her through it, I know I can.

Let it not be scary or painful. Let her be welcomed on the other side by our ancestors: by her mother, and Pop and Bill and the baby I didn't have. And let her know that she was loved.

It goes without saying that, selfish and frightened as I am, I pray the same prayer for myself.

Live, Learn, Learn Some More, Live Better

"She had an unequalled gift...of squeezing big mistakes into small opportunities." Henry James (1843-1916)

I think I may have told off my MIL last night. She called my cell while I was driving to class and asked me to give C. a message. That sounded more Mafia than it really was. "She wanted to send him a message." Really, it wasn't that kind of message.

Anyway, I said some things that were pretty blunt.

I was tired. Really tired. Sleep has been quite elusive this past week and its absence does take a toll. Did I also mention the whole brain injury = no internal editing problem? Well, yeah. Sometimes, you know, when I'm tired, or stressed or in pain, or the more usual combination of those three fates, my editing system seems to go off-line.

When I was younger, eh gads, that makes me sound old. Let's try again, before the accident, I hated confrontation. Frankly, it scared the heck out of me. Don't get me wrong, I'd do it if I had to, but it was a major effort. It cost me. I always felt like I was going to vomit right before, during and after, the terrifying act of saying something that might be perceived as offensive or challenging.

I know, those of you who knew me before and after will probably say, "Huh? What the hell is she talking about? Nothing bothered her. She was confident, she said what she wanted or needed to say."

Ahem. Well, appearances are deceiving.

I was bullied in school. A lot. I was the fat smart girl with glasses who went to Catholic school. (Think Mary Catharine Gallagher from SNL.) Yeah, that was me. Geektastic doesn't even cover it. And I figured out pretty early on that if someone is trying to get a reaction from you and you don't give it to them, they lose interest and go bully someone else. Believe me, it does work. The other piece to this puzzle is that my momma raised me to stand up for what I believe in. (Cue the patriotic/inspirational music, please.) This tended to make me feel that I needed to speak up, even though I was terrified, when an appropriately important issue arose.

So, there you have it. Me: terrified on the inside. Maybe not showing it so much on the outside. That lasted until March 07. Clearly shyness and social anxiety can be cured by a good slap upside the head.

(Ok, the social anxiety part is still there if I'm not in a heightened emotional state.) But the rest. The whole righteous indignation thing. Oh, man, I have GOT THAT DOWN now.

The joke in my family now is that, "I ain't got no qualms." As in, "I have no qualms about reporting this incident to the local constable." Or whatever. And it's true. Good lord is it true. If my old friends thought I didn't suffer fools gladly before, I don't suffer them at all now.

What I learned from those years of teaching was that a) subtlety is wasted on 98% of the world, b) stupidity is rampant in America and c) I just don't have time to spoon feed the people who are old enough to know better.

(My MIL is going to read this and think ALL of this is about her. It's not. Get that, it's not you. It's ME.)

(Cue Carly Simon music. "I bet you think this blog is about you. You're so..." Eh, nevermind.)

For example, there was that time at "the club" having breakfast with mi familia. We were in the process of ordering and there was some issue with bacon. Yes, BACON, which incidentally, makes everything better. The question was something like what's the difference between Eggs Benedict and Eggs Bernadette. Sounds like a bad joke, doesn't it? Well it had something to do with the meat. (That still sounds like a bad joke.) Anyway, Canadian Bacon came into play and our server, who, in her defense, was young, giggled and admitted she had no idea what Canadian Bacon was.

Really.

And I just couldn't let that go. I asked if she was serious because, really, she had to be joking, right? No. She had no idea. "Well it's just like bacon, from Canada, right?" At which point, I just sort of shook my head and looked at her across the table and said, "Oh, sweetie, if you're going to be serving brunch at a private club you need to know the difference between bacon and Canadian Bacon."

Years ago that wouldn't have happened. I would have waited until she walked away and THEN made the snarky comment. Today. I figure people deserve the respect of having me make the snarky comment right to their faces.

If I feel what I'm saying is true and justified, I have no fear. (This if you haven't already noticed is very dangerous because I always think I'm right and justified.) Sometimes it's good for the inside voice to stay inside my head.

Last night was one of those times. I'm not sure exactly what I said nor do I know if she took offense or not. I think MIL tends to bruise easily and I fear I might have played a bit rough, verbally that is. She'll die before saying anything to me about it, or C. Unless she writes me a letter. THAT she might do. I should probably write her a note first. It's just like a Jane Austin novel! Letter Wars 2010: The Comeuppance.

Eh. On the plus side, every time I mouth off to someone I can blame it on this terribly convenient head injury and begin preaching about the dangers of drunk driving. Maybe this isn't so bad after all.

I Pity the Fool

"Self pity comes so naturally to all of us." - Andre Maurois

That last quarter of last year's entries started to sound a bit like the transcript for my own private pity party. I'm hoping to stay away from that in 2010. No one wants to read my ceaseless griping. Heck, I don't even want to hear my ceaseless griping.

Stop griping, right?

I'm working on it.

So how to manage that? How do you keep a positive attitude in the midst of chronic pain and fatigue and overwhelming financial and relationship issues. Maybe it is just a matter of "butching up" and soldiering on.

Why is it that there are so many cliche's about pushing through problems?

Butch up. Man up. Soldier on. Get a grip. Put on your big girl panties. Deal with it. Keep a stiff upper lip. Just do it. Damn the martinis full speed ahead. Suffer in silence.

I'm sure I've missed some good ones. We definitely have a love/hate relationship with facing challenges. We don't want to have to face our own. We want to hear stories about people who overcame theirs, but we definitely don't want to hear any complains or even descriptions of challenges people are currently experiencing.

It's the Hollywood complex. We don't want to hear the struggle if we don't have the guaranteed triumphant ending.

Not everyone gets the triumphant ending. We can't even guarantee a triumphant ending for ourselves, and on some level we hate being reminded of that fact. It's like being reminded of our own mortality. We KNOW death is unavoidable, we just don't want to be reminded of it.

So my attempt here is to illuminate the process, the struggle and discovery of learning to live with a brain injury. Some days will be triumphant, some will not. I can't guarantee a Hollywood ending, but I'll try not to bore you, or myself in this process.

I don't want a pity party, even when I'm in the midst of throwing one for myself. What I really want is understanding. If you can understand how a person's life is impacted by their disability, you can move beyond pity and annoyance and see the little triumphs as well as the failures. The failures are perhaps the most important parts, because it is through failure that we learn.

My failure here has helped me to learn how I want to portray this injury and how I want to measure my successes. Letting you in, via this journal, means allowing you to see the struggle even when it isn't pretty and doesn't show me in a positive light. I hope that even then, something good may come of it.

Now Watch

"I live now and only now, and I will do what I want to do this moment and not what I decided was best for me yesterday." - Hugh Prather

Now. Not yesterday. Not last year. Not before the accident.

Now.

That's all that really matters, right? That's all we have to work with. Right now.

There, it's gone. You missed it.

Wait for it....

NOW.