Thursday, May 04, 2017

A Not-So-Random Musing

I talk about a lot of things on this here blog; I go political and snarky, and some say mean, and gossipy and cartoon-y; pop culture, hot men, TV ... I talk. A lot.

And I talk about personal stuff, too, but not really that much because I do tend to think I like to keep some private stuff private. I have talked about my family, sometimes plainly, as with my sister’s cancer, and my mother’s cancer; and sometimes obliquely with veiled references to what life was like for me.

I joke about Carlos and the fun we have; I talked about meeting, moving, living, loving and, yes, finally, marrying him; I don’t talk about the tough times, been though they exist, because I don’t like to dwell on them.

Until today; because, I think, if you let someone in on what might be considered a secret, maybe you can help them, or they can help you, or you can inch just a little closer by sharing. So, here goes ...

Carlos ahs Retinitis Pigmentosa, or RP, which is a group of inherited diseases that cause retinal degeneration. What it means is that he is losing his field of vision ... that little photo over there explains it better, though his vision is still better than that worst example. A woman we met recently explained it like this: to a sighted person, take a straw, hold it up to your eye and look through it; that’s what people with RP see.

He’s known about this for years—he was first diagnosed back in 2006 in Florida—and has studied and researched and contacted doctors all around the world to see what, if anything, can be done.

Sadly, for now, nothing can be done. There are drug trials and experimental surgeries, even acupuncture, but nothing seems to slow the progress or cure RP. So we deal. For Carlos, that means a steady decline in his vision for the last decade and he will, someday, unless there’s a cure, go blind.

There I said; and I cried a little because it’s hard for him, for us.

About two years ago, it became clear that Carlos could no longer drive at night because his night vision was growing worse; no big deal, I’ll drive. I think I’m a better driver anywhere so, who cares?

Then, in February, while I was home one morning getting ready for work, Carlos, who had already left the house, called to tell me that he’d hit a curb alongside the road; in addition to his eyesight being affected by dim or dark lighting, it’s equally affected by bright sunlight.

So, he was done driving period. He was able to get the car back home and since that day, I drive him to work, then go to work myself, and pick him up at the end of the day. And, again, I don’t mind because I’m a better driver and because I’d do anything for him.

Including the fights.

Shortly after he stopped driving at all, a friend of mine opened a new restaurant in a nearby town, and one Saturday night we decided to drive over and try it out. Now, being rural South Carolina, the drive was on two-lane twisty country roads, but, again, I was driving so, you know, it was all good.

At the restaurant, I ordered a glass of wine and Carlos asked for scotch; Carlos drinks scotch when he’s nervous or worried or frightened and I asked why he was drinking it that night and he said, “No reason.”

I should have known better; during dinner, our friend came over and thanked us for coming by, and Carlos was quiet and really kind of sullen, which annoyed me. After dinner, we ordered dessert and when the server came by and asked how Carlos liked his dessert, he said, “I’ve had better.”

I shifted to pissed off, because it was rude, considering he’d eaten every single bite of the dessert; it wasn’t bad, he was just in a mood. We paid the bill and went to the bar for an after dinner drink and that’s when he told me he was wound up because of the ride over; although a passenger, he couldn’t see the road, and with the twists and turns, and the road being so dark, the trip over left him really upset.

So I started to talk about how we needed to do things, he needs to tell me these things, and how we, and he, need to adjust, and at one point I said, “This is the last thing I’m gonna say ...”

And he said, “Good.”

And so that set off a fight; a fight saved for the next day because I’m the kind of person that if you piss me off, you’ll have a fight on your hands—verbally, of course; but, if you hurt my feelings—like saying “Good”—I don’t know how to react to that; I don’t get mad, I get hurt. And quiet.

So, we had a silent night. The next morning, though, we hashed it out and I told him that I was just trying to help, to offer a suggestion, to have dialogue about what was happening. And I was right; and I was wrong.

Carlos was upset at the trip; he was upset that I had to help him walk along the dark sidewalk to the restaurant, steering clear of trees or steps or any obstacle that he may not see; his anger at me telling him what he needs to do was because of his own fear of losing control; and losing the ability to drive is a huge loss. I mean, think about having to rely on someone to take you everywhere.

So, as we do, we hashed it out and were good, or at least on our way back to it. In fact, the same day we talked it out, we’d been invited to a meet-and-greet with the South Carolina chapter of the Foundation Fighting Blindness at a restaurant in Columbia.

I was still hurt, and kinda angry because sometimes those feelings don’t dissipate so easily, but we went; and during the meeting, Carlos was asked to kind of share his story, and he told it. But he also told the story of the night before and getting angry at the ride, and angry at having to be helped down the street; and angry at me because I was talking too much.

And he started to cry because, as he said, the last thing he’d ever do was hurt me; or me, him.

So, we muddled through it; I told him he just needs to tell me things and I need to listen; and he needs to listen. I joked—because that’s what I do—when he said that someday he’d need a seeing-eye dog and said, “Why? You have me ... a Seeing Eye Bob.”

I joked that he could get a miners hat so he could see better at night; and we laughed about that. And then came another little spat.

At Casa Bob y Carlos, we have a rule: I take care of what goes into the cats and he takes of what comes out ... as in litter boxes and hair balls.

The other night I nearly stumbled upon a hairball and called for Carlos; he came to clean it up, and got most of it but missed some. As I told him where it was, he became angry and got snappy because he thought I was making fun of his RP, or taking his lack of sight lightly.

So we had another ... discussion; quickly begun and quickly ended.

But, as it happened, that same weekend we had another get together with the Foundation Fighting Blindness and the guest speaker was a man who is nearly completely blind, and a member of the board of the South Carolina Commission for the Blind.

He was very interesting; telling his story—he’d begun losing his sight nearly fifty years ago as a child—and informative: did you know that it’s perfectly legal in  this country to pay blind workers less than minimum wage? The Fair Labor Standards Act passed in 1938, allows employers to obtain special minimum wage certificates from the Department of Labor which give them the right to pay disabled workers according to their abilities, with no bottom limit to the wage.

Seriously. In  America. But that’s another fight for another day.

But, we also learned that losing one’s sight is the third most feared diagnosis a person can receive, after cancer and HIV/AIDS. It goes back to that whole “losing control” issue. And the speaker told us that one handles the loss of sight the same way one might handle a cancer diagnosis, with the Five Stages of Grief, or DABDA—Denial, Anger, Bargaining, Depression and Acceptance.

He talked about the anger phase, where the person losing sight is so angry at the loss of vision that they take it out on those around them. Well, now, doesn’t that make sense; Carlos and I both had light-bulb moments.

It makes perfect sense, and now that we both know, we can understand it and handle it better; and joke about it.

As I told him in the car on the way home, “The next time you yell at me, I’ll remind you that you are stuck in Phase Two.”

Anyway ... that’s the Random, or Not-So-Random, Musing for the day,  There are so many people in the country going through issues with their sight—RP, Macular Degeneration and more—and I think it helps to know that you aren’t alone.

And that people will listen.

Thanks for that.


the dogs' mother said...

(((Carlos and Bob)))
Very bestest of wishes to you both.
Well written and very informative.
Will keep you two in my thoughts.

BloggerJoe said...

Wow, thanks for the courage to share that, and the sensitivity and compassion to share it in a way that brings home the human side of a disability. In every word and phrase you see/hear the love both of you have for each other. He's a lucky man, and so are you. We all "got your back" anytime you need to share, vent, kvetch, or get anything off your chest. Love you both! :-)

Frank said...

Your love for one another will sustain you both through these hard times...grief has it's own time and I can only offer you both my thoughts and support. Thanks for sharing that personal part of your life.

Raybeard said...

Terribly moving post, Bob, one which just about all your followers ought to be humbled by. I certainly am. My most heartfelt, supportive thoughts will be with you both through coming times. I wish you both super-strength reinforced by the deep regard you have for one another. Blessings on you.

mistress maddie said...

Well hugs to you both. I can't even imagine going through this, but I can imagine noting having control would be hard. It's hard if your a control freak, but to loss a sense is even worst. My mother and I both said the same thing one of your stasis said, but it being one of the worst fears. But knowing you from on here and your relationship musings, I know you two will come through one way or another.

Anonymous said...

I do understand.
The vision in my left eye degenerated over a number of years (won't bore you) but I've relied on the vision in my right eye to "see" me through. At the end of 2015 the retina in my right eye began to detach. I'd started to see shadows in my peripheral vision and I pretended for as long as I could that everything was okay but eventually went to the Dr to get it checked out. Three hours later I was in an operating theatre. Thankfully my sight was saved but I struggled for months afterwards whilst the effect of the treatment wore off. Like Carlos I have a wonderful husband who helped me through it. Losing your vision equates to ideas of loss of independence. I still fear that. I'm glad Carlos was able to open up about it, and now so have you. Keep doing that, and take emotional support from wherever and whoever you can.
Oh and I very much hope you don't mind me being open here either.

Mitchell is Moving said...

Thank you for sharing something so personal and so important. I started crying halfway through this. For Carlos. For you. But especially for the love you have for each other that will get you through anything. And I hope Carlos doesn't expect you to stop telling embarrassing stories about him. As if! I am sending abrazos to you both. And gratitude to you both for what you share with each other and with all of us.

Mz Kitty said...

Best wishes as you move forward with this together. Your story is moving, the love you have for each other is tremendous and your ability to pepper your story with your gift of snark makes it easier to read except my eyes have welled up nonetheless.
Hugs to you both.
Mz Kitty

Debra She Who Seeks said...

I'm glad you have each other to make your path easier than it would otherwise be. Hugs and best wishes to you both.

Toni said...

Thank you for sharing something so personal and personally scary. Having someone by your side is a blessing when faced with such a traumatic time and future. I'm glad you have each other.

I'm also glad you know you have us. We're here.

Theresa Young said...

Give him time and give him space. No one likes the idea of not being in control. He loves you and doesn't want to be a burden to you or anyone. That's part of the steps to accepting his disability. Hang in there. And just remember how lucky you are to have each other.. and don't be afraid to remind him of that too when he gets a little cranky. He's just trying to cope. Really you both are. Good thoughts and prayers coming to you and Carlos.

anne marie in philly said...

"a Seeing Eye Bob" - LOVE!

OMB, so many many hugs for the BOTH of you. so many life changes ahead.

carlos is lucky to have you, bob. this is the "in sickness and in health, for better or for worse" part of the marriage vows.

please hug carlos extra extra tight from RTG and I tonight.

Professor Chaos said...

So sorry. Wish there was something I could do. Good luck to you both.

Jennifer said...

I'm sure that together, you two have got this! Hugs.

Scott said...

Tears!! But thank you for sharing, I wish you both lots of love, health and happiness.

Fearsome Beard said...

I will do simply all I can do and send you both LOVE through my thoughts. Thank you for sharing your vulnerability. For it is through sharing it that you will find strength.

Helen Lashbrook said...

Knowing that Carlos feels vulnerable, as anyone would faced with deteriorating sight, means you can understand when he gets cross, but you have the right to be angry when he gets moody. You will both adjust and this will only strengthen your relationship.

BethB from Indiana said...

Thank you for sharing. I feel for both of you; Carlos for what is happening to him, and you for what you will experience as a loved one and care giver.

I have MS; I was diagnosed 24 years ago, and it has progressively worsened. I understand what Carlos is going though--I hate losing control of my independence. My hubby and I are just trying to take it one day at a time; he has his own issues to deal with, as well, so we just do the best we can and love each other.

Kirk said...

All I can say is good luck to both of you.