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"You actually have five, maybe six lesions," the neurologist pointed on the computer monitor, peeling back the layers of my brain like an onion.
"Oh. I thought I only had three." That's what I was told three year earlier when I was first diagnosed with multiple sclerosis.
But the evidence was there on the sophisticated machinery that allowed us to see the depths of my cranium: white lesions, no longer "lit up" as active scarring, but instead dull and inactive.
I have the "good" kind of MS, relapsing-remitting (RRMS), and I've been lucky enough to be in remission for these full three years post-diagnosis. The lesions are MS's calling card, so to speak, the scars that make up the sclerosis of the disease. Believe me — inactive, dull scars are a big cause for celebration! But the lesions are still there and have to be dealt with.
When a person with MS experiences an active relapse, the electrically charged lesions nibble away at the myelin that protects some of your nerves, thus exposing the nerve, causing it to light up. I was happy to not have active lesions anymore.
By this third viewing, I had become so detached from my own brain that I could look at it there on the screen, somewhat removed from the reality that it was mine. It's a super-strange experience, and I had to keep reminding myself, Yep, that's your own brain up there on the screen. Deal with it.
And you guys, it's really weird to look at MRI scans of your brain and see these white spots, whether they are bright or dull. By the time this neurologist and I (and my amazing, supportive husband) reviewed my scans, I had endured three brain MRIs in three years, one that included both of my orbital sockets, with and without dye, which is when the MRI tech injects you with blue dye that's really cold and that you feel seeping through your veins. (Take it from me: Don't listen to the sounds of nature selection on the headphones during an MRI because hearing the waterfall noise will make you really have to go the bathroom, and when you can't move any inch of your body during the 20- to 60-minute scan, that becomes a huge problem.)
The reason for my visit to this neurologist was to confirm what I already knew – that I had RRMS – and get his opinion on how to treat the weakness and spasticity that has been developing in my left leg.
I have a local neurologist whom I see once every six months, but I had heard wonderful things about this neurologist, Dr. Michael*, that I sought him out for a second opinion. He specializes in MS and spasticity, and I was willing to drive over an hour to hear what he had to say.
When we shuffled back into his office after reviewing the scans, we discussed a treatment plan that included staying on my current medication (an injectable that requires me or my husband to shove a needle in my body three times a week), keep on exercising, and try to cut down on processed foods.
I'm the third generation in my family with MS, and it's a tough pill to swallow, but the benefit is that I know what can happen when the disease isn't treated properly. Medicine: check. Exercise: check. I joined the local YMCA several months earlier and attended both tai chi and water strength-building classes while my daughter was in pre-school there. Cut out processed foods: Ouch. Now, I'm a big fan of fresh fruits and veggies and home-cooked meals, but I also adore pizza, candy, potato chips, and crackers. Luckily, chocolate made the safe list. The doctor said so!
"I'd like you to get a disability placard, too," said Dr. Michael. "You'll need it."
I mean, technically, I'm disabled – or, rather, I'm a "person with a disability" – but do I have to announce that to the whole world with a vehicle parking placard?
"On good days, I like to park a little further out in the lot to get some exercise," I tell him about my going to my regular haunts, such as Target or Starbucks. "But on the hot days, it's hard."
Summer is my nemesis, even though my birthday falls smack-dab in the middle of it. The heat, the humidity, all of it makes me miserable. I live in northern Illinois where the temps soar into the high 90s with 100% humidity, and that's what exacerbates my MS, that miserable combination of high heat and humidity.
"You'll be glad you have it," he continues, filling out the paperwork.
When it arrived in the mail a couple weeks later, I was hit hard by the feeling that I'm "officially" disabled. I've been living with MS for decades, for despite my diagnosis just three years ago, I've had it for 20+ years (that's a story for another time), but I still didn't feel "sick." Still don't. But having this placard confirms that I'm not the same woman, the same person I used to be.
I used to be athletic and a quick runner. I played softball and tennis for years, and I ran track and field as a kid. I was a really fast walker, and I've been known to dance when I've had a little too much vodka.
Now, I sometimes trip over my feet walking to the mailbox. I did jump up and down the other day when our four-year-old rode her two-wheeler bike without training wheels, but that was a total adrenaline rush, and I was excited to discover I could do that without getting hurt!
It took me a few days to use the placard the first time. I'm embarrassed to say I was embarrassed to use it.
You see, ever since I watched as my grandmother struggled with MS and require a cane and then a wheelchair, I had become a parking space superhero, so to speak, on the look-out for those degenerates who dared to use the (formerly known as) handicapped parking spaces.
I'd pull out my best death glare, never daring to call someone out on it but always on the ready. Why did they park in that spot? They're taking it away from someone who really needs it.
I don't want to be on the receiving end of those death glares.
But that's what happens with invisible diseases. They're not readily visible on the outside, and no one knows what's going on inside. And while there are jerks out there who misuse disability parking spaces, most of the time, the people utilizing them (ahem me) have legit reasons for doing so.
"Sometimes, I feel like I should get a cane, just so people know I've got something wrong," I admitted to Dr. Michael.
Maybe I should carry my brain MRI scans in the glove compartment, neatly stashed away with my disability placard? Print out this article to distribute to those who give me their own version of the death glare?
The first time I used the placard was when I brought my daughter to ballet class and couldn't find a spot in the usual lot behind the building. It was a busy evening downtown, and the closest parking was blocks away. It was over 80 degrees out, and I was fatigued and not walking well (see, I even feel the need to defend myself while writing this essay). So, I parked in the disability spot, whipped out my placard, and walked the few steps into the studio.
No one said anything. No one noticed. Instead of potentially harming myself by walking in the high heat with an already weak leg, I used the placard for its intended purpose. And it worked. The world didn't come to a crashing end.
But I've been getting the death glares I anticipated: double-takes, glances, looking at my license plates (which aren't disability plates), looking at my rear-view mirror for the large blue-and-white hanging tag. Look. It's there.
In the few weeks since, and as the temperatures soar, I've used the disability placard more than a few times to "save my energy," according to Dr. Michael. He used a battery analogy to explain why the placard is good thing. Conserve your energy so that you get to your destination, you have enough energy to walk. In other words, don't park in the remote lot of the zoo only to run out of energy and become sick while you're walking around the zoo.
Seems logical, right? Well, it is, but it's still hard to acknowledge you need it. Because my disability it invisible, I look like any other busy woman, busy mom, running around doing errands. I don't require a mobility device and may never need one because right now, I don't have any spinal lesions (yay), but MS is an unpredictable disease.
For now, look a little a little closer. Do you see how my left leg doesn't move quite right? Did you see how, after I sit down in the driver's seat, I have to pick up my left leg and put it in the car because sometimes, it won't move on its own? When my husband helps me out of the car, so I don't fall over from fatigue or imbalance? Do you hear my slightly slurred speech while speaking because my cognitive skills don't function quite right when I'm over-heated or utterly fatigued or stressed out?
That's why I have this disability placard.
And I'm not going to stay inside my central air-conditioned home, although it's a pretty appealing option. I've got to get out in the world, just like you, person staring at me in the parking lot.
Thus far, I've been spared any snide comments about "not needing" this parking placard and I'm grateful for that, but always feeling defensive. Most of the time, I don't use it all because I just don't need it. If there are empty spaces next to or near the disability spot, I'm going to park there.
I've given up my role as parking lot vigilante, and I'm working on being comfortable with my status as a person who needs a disability placard, you guys, but it's hard. Kindness, compassion, understanding, and a Hershey bar go a long way to making it easier.