Tuesday, November 17, 2015


A couple of years ago my eye doctor diagnosed me with chronic dry eye syndrome. “No problem,” he said. “Just use these eye drops every few hours and you should be good to go.” But there was a complication. I’m physically unable to put drops in my eyes, and I’m alone much of the day.

I attended a writers’ conference. In one of the sessions, participants were asked on several occasions to write short responses to prompts. But there was a complication. I can’t write or type, so I dictate to my computer. How could I dictate to my computer when everyone else was silently writing on paper or typing on their laptops?

Kim won a radio call-in contest – not an uncommon occurrence – for a concert at the Verizon Center in Manchester, New Hampshire. But there was a complication. The tickets were not for wheelchair accessible seating.

I could go on. Everyone has complications in their lives, but disabled people can’t seem to get away from them. Nothing is simple and straightforward. It takes a positive attitude to avoid saying, “screw it,” and just sitting there and binge watching episodes of Breaking Bad.

With the eye drops situation, I did some research and found an alternative treatment for dry eyes – tear duct plugs. I had them installed yesterday. Maybe they’ll work, and maybe they won’t, but it feels good to give something a try. I advocated for myself, and pushed my doctor, and I may have found a way to overcome this complication.

At the writers’ conference, I asked, “Is there a private area nearby where I could set up my laptop and microphone, and complete these writing assignments by dictating to my computer?” There was. All I needed to do was ask.

After Kim won the concert tickets, she called the Verizon Center. They said they would find us some wheelchair accessible seats when we got there, and they did. We had arrived early to make sure we ironed out this issue, and so we had some time to wander aimlessly around the venue. I was in balance mode in my iBot wheelchair when we went by an indiscriminate door being guarded by two venue employees. One of them took an interest in my iBot, and we made small talk for a few minutes.

“By the way, what’s behind that door?” I asked.

“It’s the VIP box.”

“How do we get in there?”

“You need special tickets.”

“Can we just go in and have a quick peek?”

“Tell you what, I think there’s room for two more people in there. Enjoy the show.”

Not only was our complication eliminated, but because we made friendly chit-chat, we enjoyed a serious upgrade.

Moral of the story: with patience, determination, and imagination, disabled people can overcome many of life’s complications.

One last example: a group of friends wanted to go skiing. There was a complication. I’m in a wheelchair. They did some research, and I could spend the day in the care of a handicapped skiing organization. I had no desire to participate in handicapped skiing. I told my friends I would not be going, but thanks for thinking of me.

Moral of this story: if there are hoops you just don’t want to jump through, if there are complications you simply choose not to overcome, there is no shame in watching a few episodes of Breaking Bad.

Tuesday, November 10, 2015

I Don’t Wish to Have My Old Life Back

People with MS often lament, “I just want my old life back,” but I’m pretty sure I’ve never uttered those words.

As disheartening as it is to suffer with this disease, because of my struggles I’ve grown emotionally, and I’d rather not go back to the person I used to be. I’m better than that. I’m more empathetic and thoughtful. I’m tougher than I ever was. I like this version of me more than the old one. So, if I were to become nostalgic, it would be along the lines of, “I just want my old body back.”

But I don’t say either of those things, because I spend almost no time thinking about what used to be or what could have been. That type of sentimentality only undermines my happiness. I expect that most folks who find themselves longing for their healthy days understand that it’s not time well spent, but they can’t stop themselves. I’m lucky. Because of DNA or the example my mother set for me, or some of both, I’m disinclined to go to a place of regret or mourning.

I’m not without angst, though. When I imagine a better life, I think, “I just want my disease progression to stop.” I know I can handle this, but despite my best efforts to stay grounded, I sometimes agonize about what is yet to come.

Other than these occasional lapses, I spend most of my time in the moment, as the Buddhists like to say. Here, I am neither saddened by what could have been nor frightened by what might yet be. Give this a try, and you may find a measure of contentment. I have.

For Joe

Tuesday, November 3, 2015

Offering Help to a Disabled Person

My friend and fellow blogger, Stephen, recently posted Disability Etiquette Tips. Number three on that list read:
“Don’t assume that because a person has a disability, they are in need of assistance. If a person appears to need assistance, ask first.”
That’s some solid advice for muggles. Here's some advice for the disabled:

To a great extent, you are in charge of these situations. The bystanders are uncomfortable, uninformed, out of their element, and looking for guidance. Take charge and guide them.

People desperately want to help, and they typically fall into one of three categories:

This porridge is too hot: They help without asking. They over-help. When you encounter this variety, using a pleasant but firm voice, say something to the effect of, “Thank you so much for offering to help, but it’s important to me that I do this myself.” Don’t just sit there and let them make you uncomfortable.

This porridge is too cold: Due to an irrational fear of offending, they don’t offer to help, and may even appear disinterested while you struggle to get your coat on. But if you need help, and you can get their attention, ask them. They almost always jump at the opportunity.

This porridge is just right: They ask if they can help and respond accordingly. Be thankful when you encounter this variety.

No porridge at all: They are lost in their cell phone, and you’re invisible to them. Typically 25 years old or younger.

Kim is my blog proofreader. Her comment on this post was, “If you are employing the Goldilocks and the Three Bears analogy, does that make you Goldilocks?”

“Shut up. I am not Goldilocks.”

“Are too.”

“Am not,” and so forth, long into the night.