What my MS says about you

[Back on November 8, before this blog went on a self-imposed hiatus, I mentioned the following concept, musing that I thought I’d written about it already. Chalk it up to my MS-addled brain creating false memories. I’ve searched and can find no evidence of such a post, so here goes (again?)…]

Based on personal experience, the way people have responded to the news that I have MS reveals a great deal about their personality and temperament. Here are a few examples:

I told a friend who is a financial executive. He went on and on about how I should protect my belongings, invest what I have, and sue my employer.

A young woman who happens to be one of the most positive people I know responded to the news of my RR-MS diagnosis, “At least it’s the best kind.” Reminds me of the old joke about the guy who fell off a 50-story building. As he flew by the 15th floor, he was heard calling out, “OK so far!”

One of the most pessimistic people I know immediately informed me of the person he knew who died of MS. Gee, thanks.

A very sensitive young male acquaintance of mine simply started to cry.

Many people say nothing at all, scared off by bad news they have no capacity or experience to process. In that sense, MS is a great filter. It siphons off fair-weather “friends” and hangers-on who can’t deal with reality. I’m probably better off without that kind of person in my life anyway. For example, there was a guy I used to work with who I often talked to at length about all manner of topics such as family, sports, vacations, and even, on occasion, work. From the moment I told him I had MS, he never spoke to me again. In fact, I’m not sure I ever saw him again.

A truly inexcusable reaction came from the manager I reported to who never had any idea what I was talking about. He had no clue what MS was and showed no inclination to find out. To this day, I really think he believed my limp and cane were for an ankle sprain. It’s not as if this guy had a hundred (or even a dozen) people reporting to him. I was one of about four people he managed. Yet he was too busy to concern himself with the details of one of his employees having a chronic illness, an illness that caused me to leave the workplace while I was on his team.

As we all know, the worst reaction is this one:

But you don’t look sick.

To which I now have a wonderful and apt response, courtesy of a comic a friend sent me recently:

And you don’t look stupid. Funny how looks can deceive, huh?

Let’s see what kind of reaction that gets.

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Welcome to Haiti, the s***hole

When a well-known racist refers to an entire nation of black people as a s***hole, what is he implying about its residents? He’s implying nothing, subtlety being beyond his middle school intellect. He’s saying outright that, in his opinion, the citizens of Haiti are s***. I know different. No one should believe the rantings of a narcissistic madman, no matter what position he lays claim to.

By sad coincidence, today marks the anniversary of the earthquake that killed tens of thousands of Haitians and left millions homeless. Another sad fact is that, if Haiti is in a hole, it’s one that has been dug by oppressive forces of this and other wealthy nations.

I was in that s***hole less than two months ago. Here are some photos I’ve taken there over the years. Draw your own conclusions. Is it a s***hole or is this the lie of an a**hole?

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What am I waiting for?

As a Christian, a follower of Jesus, I’m supposed to rely on the Bible as my rule of faith. Indeed I do. The Latin phrase, sola scriptura, is used to describe the doctrine to which most conservative Protestants ascribe: by scripture alone.

In general, I’m OK with that, although the more conservative among us take it too far, declaring that all scripture is to be taken literally. Taken to its extreme, this would lead to some pretty bizarre ideas. For example, Psalm 91 says:

He will cover you with his pinions, and under his wings you will find refuge…

If we take this verse literally, God must be a bird. But He isn’t so we’re missing something. Some of scripture is poetry and uses poetic imagery never meant to be taken literally.

The other extreme to which sola scriptura can be taken is to believe that God never reveals Himself through any other means than scripture. Even the Bible denies this claim. The writer of Psalm 19, believed to be King David, sings:

The heavens declare the glory of God,
and the sky above proclaims his handiwork.
Day to day pours out speech,
and night to night reveals knowledge.

So His creation speaks truth to us as well. This Christmas season, He used another, more unlikely channel of communication to get my attention. A fortune from a fortune cookie.

Chinese food is a favorite around the holidays, especially New Year’s. What with everyone making resolutions (which will be broken faster than a two-year-old’s Christmas toy) fortune cookies were made for this time of year. I love the cookies and the fortunes. It helps that I’ve gotten some of the coolest fortunes over the years. The most outrageous one ever said the following (I am not making this up):

You are the only person who can determine the whereabouts of Yma Sumac. Do it.

This was before the age of Google and Wikipedia, so taking on that task was daunting. I’m proud to say I succeeded.

The best fortune of all was one I got with my meal on New Year’s Eve 1984:

A very special child will soon enter your life.

Ten days later, my first daughter was born. Can’t get much better than that.

Now to this year and a message that honestly shook me.

For the past several weeks, I’ve had all the motivation of a slug. I’ve written nothing, including blog posts. (Has anyone noticed?) I’ve accomplished next to nothing. I’ve been lax in many of my responsibilities. What I needed was a good swift kick in the glutes. It came in the form of this fortune:

How about that for a direct hit? It wasn’t scripture, but I believe 100% it was a message from God to me. Since getting whacked upside the head with that, I’ve finally made some progress in projects I’d been putting off. You’re reading one of them.

It’s unlikely I’m the only one who got that fortune. I can’t imagine the fortune cookie people make many one-offs. Could it possibly have been meant for you, too? Perhaps that’s why I’m writing this post: To spread the message to others who need it.

If you’re one of my readers with MS, then I hazard a guess that this word could be aimed at you. When it comes to MS, moving is one of the best things we can do. (Another biggie is staying connected… in person.) I partially credit that idea with the current good state of my MS. (See the “B” part of the PB&J MS Treatment for details.)

There you have it: God speaking to you through me: Get moving. Don’t worry, I won’t let it go to my head. After all, He spoke through another jackass once.

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Going mobile…

Whatzit? Answer embedded in text below.*

One of the most fascinating things about MS is that it reveals a lot about those who don’t have it. When I tell someone I have MS, their response (or lack thereof) tells me about all I need to know about them and my relationship with them. (I could have sworn I’d written a whole post about this topic, but I can’t find it. Oh, well, why not do it anyway?)

Another revealing aspect of people’s reactions to MS (and the disabled in general) came up recently in a conversation I had with a friend of mine. She generally uses assistive devices of one kind or another to get around. Depending on where she’s going and what she’s doing, she might use a power scooter, a wheelchair, or a walker. It turns out that, when she’s out in public, people have different reactions depending which apparatus she’s using.

The walker, my friend tells me, arouses pity more than anything. She sees it in their eyes: “Better you than me.” After all, who would use a walker unless it was absolutely necessary? She gets the most positive reactions when she uses her wheelchair. People smile and help as if, as she puts it, they’ve taken sensitivity training.

No such kindness is demonstrated to her when she’s in her scooter. Maybe it’s the way they’re marketed or how they’ve been used as jokes in popular entertainment such as “Seinfeld”, but people resent them. The expressions my friend sees send the message, “You don’t really need that thing.” People in scooters are viewed as lazy, some kind of freeloaders who don’t want to pull their weight.

Comparing notes, I’ve confirmed what she has observed. The only assistive equipment I’ve used are a cane, a leg brace, and an FES device, but each brings forth its own set responses from observers. The cane is the most benign. I’ve had people nearly start crying at the sight of it. Others insisted on helping me, even when I didn’t need or want it. The orthotic leg brace (*that’s the picture above, though it’s upside down to make identifying it more of a challenge) freaks people out. Most have never seen such a beast and can’t figure out what it’s for. And they never ask.

The FES device is a great conversation starter. No one wants to talk about why it’s needed, but the technology is so cool, it always draws comments. Are you a cyborg? Part of the Collective? (Resistance is, indeed, futile.)

If I didn’t want to deal with those reactions, the only alternative was to wobble around like a Weeble (except we do fall down) and let everyone think I was drunk. That can have its upside unless I’m driving. :-O

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The Doggy Poopy Fairy has left the building

IMG_20171019_154008716I ride my bike. A lot. As I’ve said countless times before in this blog and to my long-suffering friends, it’s a major part of my MS and emotional therapy. I often ride on bike paths, which I share with a diverse group of citizens: joggers, rollerbladers, skateboarders, parents pushing strollers, couples holding hands, elderly folks out for their daily constitutionals, and dog walkers, among others. I enjoy seeing all of them out there. Each one adds a community aspect to what I already consider to be an exhilarating and enjoyable experience.

But I need to talk to you dog walkers for a moment.

Sorry guys, but I can’t think of many things more disgusting than picking up dog poop, even with the semi-sterile inside out baggie method.* But it must be done. To your credit, most of you are good canine fecal stewards.

Unfortunately, some of you do only half the job. Yes, you do the dirty deed, but then you leave the little baggie on the path! For what? For who? I have news for you: The Doggy Poopy Fairy has retired. (And, yes, you do have to use the word “poopy”.) He no longer cleans up after you partially clean up. He’s no longer leaving little prizes under your pillows in return for Fido’s fetid feces.

The result is that my bike path is decorated with the most offensive ornamentation imaginable. The bags, which come in many cheerful hues, sit at the side of the path, adorn guard rails, and even, in a truly festive gesture, hang from tree branches! Fun!

IMG_20171019_154042357

What’s the point? Honestly, is stepping on a bag full of dog doodoo any more pleasant an experience than stepping on the free-range version? Unless one is at that moment barefoot (heaven help you if you are) I say the answer is no.

I know you don’t want to carry crap around with you. Who would? (Although most of us do so in the metaphorical sense.) But it’s all part of the process: You package it. You oughtta ship it.

Do us all a favor. Finish the job to its logical end. (Pun intended.)


* One thing more disgusting was the lady I saw who wiped her dog after it defecated. In public. In broad daylight. On a busy main drag. Yikes.

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Just say, “No, Doc.”

I’m my parents’ son, but it’s a different world today than the one they lived in. My parents came from a place where the doctor knew what he (back then it was a man, more often than not) was talking about and they did what he said, no question. He had the white coat hung on his shoulders, the diplomas hung on the wall, and the stethoscope hung around his neck. He knew best. They were like poor Brian Regan at the doctor.

Although I’m the child of my parents, I’m also a child of the 60’s. We learned to question authority, including doctors. The arrogance and god complex of many medical practitioners has hung in there long after they stopped prescribing bloodletting and Radithor. Here are a few real life examples of the arrogant behavior that gives me pause:

Doctor: “Don’t eat anything on this list.”
Patient (pointing to a confusing entry): “Why is this on the list?”
Doctor: “Just don’t eat any of them.”

Patient (on being diagnosed with MS based solely on a single MRI): “I thought an MS diagnosis required multiple symptoms?”
Doctor: “I know what I’m doing. I’ve been doing this for 30 years. You fit the profile.”

Doctor: “No more trips to Haiti.”

Doctor (to patient in wheelchair): “Why don’t you have a power chair? I guess you just like to be pushed.”

Dermatologist: “Put on SPF15 sunscreen every day. And if you go outside, put on SPF 30.” (Sunscreen indoors? What world are you living in, Doc?)

Neurologist: “MS doesn’t cause pain.”

Neurologist: “MS isn’t the cause of your clumsiness.”

Doctor: “You can’t disagree with me.”
Patient: “Why not?”
Doctor: “Because I’m the doctor.”

It doesn’t take many encounters like those before the naiveté of my parents melts away altogether, replaced by the cynicism I now subscribe to.

Never has there been a better reason to question doctors as there is when dealing with MS. They’re just flailing away at this beast the same as the rest of us. As my doctor once said, “MS keeps you humble.” (That’s why she’s my doctor.)

I remember standing up to my (former) neurologist. I’d been on one of the interferon drugs but had developed the nasty NABs (neutralizing antibodies). Who knows how long I’d been plunging  a needle into myself for no reason? This being before the advent of oral meds, my options going forward were limited:

Tysabri – Hmmm… It kills about 1 in 1000 people who take it, 1 in 100 with certain risk factors. Yeah, I think I’ll pass on that one. I don’t like the odds.

Copaxone – A shot every day? Not sure I want to lower my quality of life that much, thank you very much.

That’s when I dropped out of the DMT scene. By the time newer, less perilous options became available, I was doing so much better under my PB&J regimen, I decided to stick with that.

The lesson here isn’t (necessarily) to give up the drugs, it’s to stick up for (not just stick a needle in) yourself. Don’t be bullied by doctors, the medical establishment, or advertising. It’s your right (dare I say responsibility?) to ask questions. You know your body and your condition better than any doctor. You are your own best advocate.

If you don’t do it, who will?


It’s safe to say that this blog will never get an endorsement from pharmaceutical companies or MS organizations with such counter-cultural views, but I have to practice what I preach: Advocate for myself. If someone else is helped, so much the better.

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MS Years

I ate lunch today at one of my favorite local spots, Cafe 12. Great food, great desserts, and the best apple turnovers I’ve ever had. And that’s saying something. It’s also a cool place to linger for the purposes of conversation or writing.

I was with a relative from out of town who asked how long the cafe had been around. Amazingly, it’s been four and a half years in a location that had previously been a black hole for food purveyors. He commented that, the restaurant business being what it is, its age was equivalent to about 75 human years. That’s a perfectly apt comparison.

When I got home, my inbox contained an email notification that the very-young-looking-for-her-age Yvonne deSousa had just published a new post in her MS blog. In that typically clever post, she comments that her “body feels like it’s aging at the rapid rate of two years every day”. That figure might be an exaggeration, but the sentiment is right on.

Having MS virtually speeds up the aging process.

Look, you’re gonna lose your vision, your strength, and your bladder eventually, but MS pushes you into it a lot sooner than anyone would expect or desire and usually faster than we can mentally and emotionally adapt to it. You’re fully justified in feeling cheated if, unlike me, your world view contends this life is all there is.

To make matters worse, the process can’t be accurately quantified because it isn’t consistent across the disease’s targets. If you want to find the human equivalent age of an animal such as a dog, cat, or iguana(!), you can use a handy chart like the ones on these pages. (It turns out that the classic 7 dog years to one human is a myth. Who knew?)

Not so easy with MS. One person in a progressive stage might advance a decade in a single year, while someone with a more benign course might add no more than a couple of weeks in the same span. And that could change year to year. Heck, it could change day to day, person to person! It all brings to mind something I wrote previously:

…to paraphrase the immortal Joaquin Andujar, MS can be described with one word: you never know.

That statement feels as true to me now as it did when I wrote in one of my first posts over seven years ago.

I don’t know what that is in blog years.


(NB: Cafe 12 is not handicapped accessible. As an advocate for accessibility, this annoys me. Under normal circumstances, I’d avoid a place like this but I know it’s not the owner’s fault. Her landlord doesn’t want to make the investment. I don’t want to punish a quality local business because of a landlord’s greed and insensitivity. Besides, I’m hooked on the apple turnovers.)

 

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