Each handicap is like a hurdle in a steeplechase, and when you ride up to it, if you throw your heart over, the horse will go along, too. ~~Lawrence Bixby

Saturday, July 2, 2011

Doffing the Mask

Lest you all think that life as a person with disabilities has been a bunch of giggles, I have to tell you that sometimes it really SUCKS. I’ve gotten pretty good at putting on the mask of happiness and well adjustment in public – and mostly it’s genuine when I'm doing things I love to do  – but it’s been a damn bumpy road a good deal of the time. There have been frequent adjustments to our lives, from how often we go out, to having to make major – and expensive - accessibility changes to the house, to cancelling vacation plans.

Because my nerves are sending incorrect messages to the muscles in my legs and feet, the muscles are activated all the time (twitching and spasms), so I get fatigued easily. (Imagine if your legs never rested.)  Lately, because of muscle weakness and lack of coordination, I have difficulty even walking across the room. I’m often in a lot of pain (nerve and muscle pain). I fight depression almost daily.

There are many things I can’t do anymore, like work in the yard or do much around the house, which means Laurie bears a much bigger burden and I constantly fight guilt. She doesn't get as much of me as she used to. This isn’t what she signed up for – not that we can ever predict how that’s going to turn out, but we were hoping for a couple decades of more fun and less distress.

I can’t stand anymore when I sing, which feels unnatural! I will need hand controls for the car in the near future because I can’t always tell where my feet are. I have to sit on a stool when I’m cooking. If I want to do yoga - previously one of my favorite activities - I have to do it sitting in a chair. I used to pride myself on my balance poses.

Why am I telling you all this? Not because I want pity or sympathy or cooing words of comfort, but because I need to be completely honest about what it’s like for me to become progressively disabled. I need my friends and family to know what it's like for Laurie and me on a daily basis. I love telling difficult stories with a healthy dose of humor because I think it’s so much easier to hear. But sometimes I just don’t feel very funny and I need that to be OK.

I need witnesses to the difficult times. I know not all of you are able to do that, and that’s OK. Perhaps I’ll code my posts with happy or sad masks so you’ll know whether or not to venture forth.


Tiffin said...

Well, m'dear, speaking for myownself, you don't need to code your posts. I won't be scuttling away if you post something gritty or brutally honest. If you are down, I want to know. I'm in this friendship thing for the long haul, not the sugar-coated lalalalala I can't hear you one.

As you've heard me say before, my dear old Dad who had Parkinson's used to say "we don't get to choose our lot in life, just what we'll make of it". So I want to know what you're making of it, all of it.

Jill said...

You don't need to code your posts - true friends (like me) will stand by your happy or troubling days.

For what it's worth, I am very enlightened by your posts. My mom now has Parkinson's and it's really affected her mobility. She has transitioned to canes, walkers and scooters with equal grace and some stubbornness. So, reading your posts helps me understand a little bit more what Mom goes through. And you too, of course. =)

So thank you for writing!

Terri said...

Thank you, dear friends. Your words mean so much to me! xoxoxo

Laura said...

Add me to the chorus of commenters. My dad has Parkinson's (funny how that's a theme here), and like Jill said, your blog helps me understand.

I appreciate your candor, want to learn from your experience and, most of all, want to be there for you. xoxo

Roberta said...

Terri, you are also speaking to things that others are going through but haven't taken off the mask for fear of getting pity instead of understanding and support. Or when they let the mask slip a bit people don't seem to care or are tired of hearing about the daily struggles someone with disabilities goes through. So keep it up with humor or without. Like your other friends said, they are true friends and they will be there for you regardless, they are there for who you are not for what limitations you have.

So keep up with the brutal honesty because without knowing it your helping others in ways you didn't imagine when you started.

Nancy said...

Congratulations on your stairlift, it appears smooth, elegant, and safe! Your post today is so meaningful to me on many levels. It lets me know more about that quiet revolution that I've sensed has been stirring for so long.

You and Laurie as a couple demonstrate tenacity in your consistent and creative problem solving, whether that be at a practical level or emotionally with poignant communication. The spirit in each of you rides only forward, no matter which way you are facing.

Anonymous said...

I welcome your honesty. What a great service to remove the mask and give us the truth. Many of us will certainly pass through times like you or Laurie are having. The facts about how you live through this and how you are living through this together gives me hope. Thanks for the truth--in your art, in your happy and sad musings. Thank-you.
(And soon I will remember what my g-mail account is so I can post using my name . . .) --Charlotte

Anonymous said...

True friends and a true community is where you are loved for who you are and whether or not you choose to wear the veil of "I'm fine." I deeply appreciate your "brutal honesty" and there is absolutely no need to whitewash the truth of your experience. Another truth is that you are not your disease, you are the fabulous YOU which has nothing to do with the disease, and which the disease cannot touch. Nor can it touch the love you share. My mother, who has Parkinsonian-like severe neurological issues, is going through progressive neurological conditions also. Anyway, keep it coming Terri. You are loved and you are most certainly not alone. Jackie

gwenlyn said...

Ditto, ditto, ditto. No codes; you don't need any masks. We'll take ours off too. Thanks for your words! I love you, T.

Unknown said...

We all face the possibility of your experience. I found this web site the other day and thought of you:

Terri said...

Thank you. I'm not sure who you are since your login is "Unknown."