Wednesday, October 22, 2014

Why is the Government So Afraid of Medical Marijuana Research?

In July 2014, my family and I traveled to a suburb of Denver, Colorado for a family reunion. As a subject matter expert on Mexico’s drug war, I’ve commented pretty frequently in the media on the potential impact of marijuana legalization on Mexican drug cartel operations and profits. I also keep track of how much dope is coming across the border, who's bringing it across, and how. Because it's not right in front of my face, the whole marijuana thing has always been an abstract concept for me. To make my point, when we were in Colorado, I never even thought about the fact I could just go anywhere and buy pot after we arrived in the first state to fully legalize it.

Then I learned that one of my family members—a conservative Tea Party Republican—had actually gone to visit a pot shop a few weeks earlier. I was floored. She didn’t buy, let alone smoke anything, and her visit was more out of curiosity than anything else. But then came the real shocker—several of my relatives suggested I go check it out for myself.

I've had MS now for almost ten years, and one of my symptoms is muscle spasticity in my legs. That means that my hamstrings get very tight if I’ve been sitting or lying down for more than a few minutes, and in moments of stress, nervousness, or fatigue, my legs straighten like a board. I also get bad muscle cramps at night, so I take a prescription medication called Baclofen to help relieve that. It’s no secret that people with MS-related spasticity and pain have also (or otherwise) been smoking or otherwise ingesting marijuana to help relieve these symptoms, but the thought of actually trying it made me nervous. I have never used any kind of illegal substance in my entire life, mostly because I was a Special Agent in the Air Force for eight years and the daughter of very conservative and anti-drug Cuban parents.

So I started to do what any analyst worth her salt would do: I researched the hell out of marijuana. I knew that I did NOT want any sort of psychotropic effect, or “high.” I also didn’t want to feel too fatigued, or “stoned,” because I have kids and responsibilities and need to function as well as possible. In other words, I was looking for a strain that would make my legs feel better and would leave me feeling at worst like a just had a glass of wine. The amount of information available about different marijuana strains and what they do is overwhelming. I had to learn about the difference between sativa and indica, the balance between THC and CBD levels, and the difference between “high” and “stoned.” There are many more aspects of the pot plant that are too numerous and complex to list here, but for my purposes, this was the kind of information I needed to be able to pick from a pot shop menu.

Long story short, I found the blend that I felt would work best for my MS symptoms—something called AC/DC, and in some places it’s also known as Charlotte’s Web. It has a high CBD content and very low THC content, which is ideal for therapeutic purposes and people like me who have no interest in getting high. Sadly, after many hours of research spent finding this perfect blend to try, the pot shop my family members had visited didn’t stock this strain, and we ran out of time to visit a shop that did sell it before we had to fly back home.

But recently I’ve started thinking, why was I the one who had to do all this painstaking research? With 23 states and the District of Columbia selling medical marijuana legally at the state level, why isn’t the federal government falling all over itself to allow multiple transparent scientific studies to be conducted on the effectiveness of marijuana for different physical ailments? After all, if the Obama Administration supports the US Drug Enforcement Administration’s stance that marijuana has no medicinal value whatsoever, it should be anxious to fund studies that will no doubt prove them right…right?

On August 9, the New York Times published a thought-provoking article on the obstacles the federal government has placed in front of several attempts to conduct research on the potential medical benefits of marijuana. The most obvious example of these obstacles is the fact there is only one place in the entire United States where researchers can legally obtain marijuana for use in their studies—a federal facility at the University of Mississippi in Oxford. The facility also doesn’t grow every strain that’s currently available at pot dispensaries around the country, so growing a new strain for research can delay a project for a year or more. The regulatory and bureaucratic hurdles that researchers must jump over to get a study approved are enormous, to say the least.

Part of the reason behind these challenges is the fact that marijuana is classified by the federal government as a Schedule I drug. This schedule ranks different drugs based on their potential for abuse and medicinal value (if any). Drugs in the Schedule I category are thought to have a high potential for abuse and no medicinal value at all, and include marijuana, heroin, LSD, Ecstasy, peyote, Quaaludes, khat, and “bath salts.” This is despite the fact that marijuana is less addictive than nicotine or cocaine (a Schedule II drug), and neither cigarettes nor alcohol have any accepted medicinal properties. Dr. Sanjay Gupta, a highly respected doctor and CNN’s chief medical correspondent, wrote in August 2013, “[Marijuana] doesn’t have a high potential for abuse, and there are very legitimate medical applications. In fact, sometimes marijuana is the only thing that works.”

But let’s assume for a moment just two things: that the federal government wants US citizens with diseases and chronic health conditions to get better, and that it honestly doesn’t believe marijuana is the answer. Faced with overwhelming anecdotal and some researched-based evidence that marijuana in some forms does provide relief for several medical conditions, why wouldn’t an administration that says it supports education and scientific research more strongly encourage and facilitate transparent academic studies that might help more people? If President Obama and the DEA truly believe marijuana can only get people high and that it deserves to remain a Schedule I drug, such research should substantiate their claims and end the argument for good. So what is the government so afraid of?

Clearly marijuana use—whether for recreational or medicinal purposes—remains highly controversial, although popular sentiment in the US about its use for any reason has softened considerably over the past several years. Personally, I'm all in favor of legalizing [just] marijuana--not because I want to get high, but because I think it's hypocritical that alcohol and cigarettes are legal when they are more addictive, physically harmful, and dangerous when abused in the case of alcohol. Considering how many other drugs with higher abuse potential are currently being prescribed (don’t get me started on Oxycontin) and studied, it’s hard to understand why people like me have to throw themselves into the sometimes nebulous world of sort-of legal marijuana just because our government refuses to facilitate the study of a simple plant.

You may have read in my last post that very soon I'm making the emotionally difficult transition from using a walker to using a power wheelchair. I know marijuana won't help me walk any better, but those painful leg cramps and stiffness I talked about? What if that can help me? I'm too timid to try anything that's illegal or not strictly regulated, and I have a feeling there are plenty of other people with MS who share my apprehension. I guess that's my challenge to Obama on this pot research issue: If you think you're so right about medical marijuana, then work harder to prove me wrong.

Sunday, October 19, 2014

Knowing When You Can Fight, and When You Cannot

There comes a time--well, actually several times--in the life of a person with MS when he or she has to come out of a state of denial and realize that he or she is starting to get worse. I've had this disease for almost ten years, and I knew going into the whole ordeal that MS is a progressive disease. My physical abilities would degenerate over time, but the time would be a real variable depending on the effectiveness of my treatments and the fingerprint-unique course of my own disease. 

Every time this has happened it has been emotionally excruciating, although in some cases more so than others. The first step about seven years ago was to buy a cane. I didn't need it every day or all the time, so that adjustment was fairly easy. The hardest by far was when I realized I needed to start using a walker. It's hard to forget when that happened because it was about two months after my husband left for a deployment to Afghanistan in 2011. My walking ability deteriorated pretty rapidly during that time, which is probably due to subconscious stress from the deployment, although it's really hard to say for sure. Making matters worse was that my need for the walker was compounded by my "move" from the more common and easier-to-deal-with relapsing remitting form of MS (where you have occasional flares or relapses from which you recover) to the secondary progressive form (which is a very slow and constant downhill slide).

I did the best I could with the walker situation. I decided to take it to an auto and motorcycle detailing shop to get flames painted on it, and the St Louis Post-Dispatch did a neat story on the whole thing. I got better at getting it into and out of my car and really loved that I had a place to sit down and rest absolutely everywhere I went. At this point, we were living in Illinois and I was still able to maneuver around our house without any help based on the way the house and our furniture were laid out.

Then a few months before we left Illinois, I started experiencing something called drop foot, which is common in people with MS, stroke victims, and people with spinal cord injuries. I went to the VA for help after my physical therapist recommended I get fitted for an electrostimulator called a WalkAide. At the same time I got the WalkAide, I also started the process of requesting a motorized scooter through the VA. For whatever reason, getting the WalkAide and later the scooter weren't as emotionally difficult for me. Maybe because the benefits were so great and so immediate that I didn't have time to think anything was bad about either one. I could now walk without my foot dragging along the ground, and I could easily go with my family to the zoo or museums and attend conventions in large halls with ease.

What's interesting, as I go into this next transition in a moment, is that all of these devices had the same thing in common. Every single time I stepped "up" to the next assistive device, I cursed myself for not having gotten one sooner. I don't know if I was being stubborn, proud, in denial, or a bit of everything (the most likely). My life was invariably made MUCH easier by every single device, and I more or less got over the self-consciousness associated with being a young and healthy/fit-looking person using a cane/walker/scooter.

But this transition that's coming up shortly is going to be the hardest of them all. When we moved into our current house in Tucson, we knew there would be a possibility that we would have to make it at least partially accessible. I started using a walker inside the house instead of just a cane about three months after we moved in. Barring any major medical miracles, chances were good that I would continue to deteriorate at the same pace and need more than a walker inside the house to get around. That day came for me earlier this week, and it wasn't pretty.

It's hard to describe the feeling of sitting down and thinking, "You know, I just really don't want to walk anymore." Sounds insane, doesn't it? All things considered, I'm happy about the fact I can still move around on my feet in some capacity. For a long time I felt like I NEEDED to walk at least for a portion of the day because it would be good for me. Until it got harder. And harder. The cramps in my legs and glutes at night started getting worse, as did the pain in my back from trying so hard to move my legs. Imagine having 50-pound ankle weights strapped on to each of your legs and having to go through your entire day that way; that's as best as I can describe it. It was taking me minutes to get from one end of a three-bedroom house to the other instead of seconds; I can never make it to a ringing phone in time. I found myself having to rest more often after doing just one thing in the house instead of after three or four things. And it just hit me: I'm officially tired of walking.

To say this acknowledgement brings mixed emotions is an understatement. On one hand, I feel like a quitter. I'm supposed to be a fighter and I'm not supposed to give up, right? Who on Earth would willingly stop walking when they still have that ability, however limited it might be? I'll tell you: when the prospect of not having to walk [so much] anymore brings your soul a huge sense of relief. Every military officer reads Sun Tzu's Art of War at some point, and while I admit I had to look this quote up to get it right, I remember the general sense of it: "He who knows when he can fight and when he cannot, will be victorious." I've decided that by being tired of walking, I'm not stopping my fight. My fight has simply transformed from the physical AND the mental/emotional/spiritual to just the latter, and I'm learning to be okay with that.

So I'm working with the VA again to obtain a small/travel power wheelchair to use inside our house. This is by far the most complex transition to an assistive device I've had to deal with so far, and my husband and I have several things we have to figure out with our landlord to make this as seamless as possible. One good thing about my MS progression is that it's been slow, so we've had time to think about and research the things I'll need, like several threshold rubber ramps in different spots around the house. It's also a very tight fit in one doorway because part of the refrigerator blocks it. If the smallest power wheelchair they can give me won't clear it, we'll need to pay to get the doorway moved a few inches or widened. On a related note, I have to start taking showers in our guest bathroom because I can't get out of our old-school sunken shower anymore. That will involve buying what they call a sliding transition bench--along with moving my bath stuff and sharing (part-time) a bathroom that always smells like the pee of two little boys who use it. That being said, maybe now I won't dread taking showers because of the physical effort involved, and maybe I'll be able to cut down the time involved in simply bathing from one hour to something more reasonable.

This isn't something that will happen overnight due to the VA evaluation and approval process, so we have time to make the necessary changes and for both me and my husband to emotionally get used to this next stage in my MS progression. For now, I choose to focus on how AWESOME it will be to move around our house quickly and easily! There is so much that I have put off doing--much to the burden of my incredible husband--because it's just too hard or I'm too tired. Simple things like picking stuff up, or putting laundry away, or getting things for the boys will be SO much easier, and I can't tell you how much I'm looking forward to that. There will be some bumps and scratches, no doubt--and maybe even some bruised toes. But I have no reason to doubt that after I get this power wheelchair, I will once again wonder why I didn't get it sooner.

Tuesday, September 9, 2014

When "Supermom" Crashes and Burns

Supermom officially crashed today. I was in the middle of heating up some pancakes for our kids' breakfast and I just started sobbing. Our two boys had only been awake for half an hour, but they were already fighting, yelling, hitting each other, crying, and being disobedient. My poor husband is trying to get ready for work while dealing with their chaos, and I'm trying to keep it together while making snacks and lunch out of the few lunch-worthy ingredients we had available in the pantry. I woke up with a slightly scratchy throat, and I can't tell if I'm getting my second cold in two weeks, or if it's just from sleeping on my back for too long.

Then it just became a downhill slide, and everything I have going on in my life piled up in a split second. It looks a little something like this:

- My new business has a lot of money going out, but no money will be coming in for some time.
- I have several continuing writing commitments for my consulting business.
- I have to find a hotel for the Texas Book Festival in late October near the Capitol, and all the rooms under $300 a night are taken.
- I have to bleed more money to attend a conference in November in Florida.
- My kids start soccer practice this week--on alternate days at two different locations.
- I have a 75-minute presentation to create from scratch by next week.
- I can't help my 6 year-old with his Common Core math homework because there are some problems where I don't understand what they're asking--and I took calculus in college.
- I have to interview backup babysitters this week.
- One of my son's Tiger Cub Scout socks is missing.
- Did I mention I have multiple sclerosis while all this is going on?

Honestly, the MS is just incidental at this point. And I'm luckier than a lot of people to have two great kids, an amazing husband, and exciting career. Hell, I was in New York City last week to tape an interview for the Stossel Show on FOX Business, and was being shuttled around town with my best friend in an executive sedan; that's nothing to cry about. But there are just some moments in time where everything crashes together in the space of one second while you're microwaving pancakes, and it just gets to be too much.

So what do I do? My sweet husband suggested I take time after the grocery delivery this afternoon to go get a pedicure or massage to have some "me" time. Sadly, I don't even have time for that, but just the thought of it is pretty nice. As much as I would love to just sit and do nothing, or even curl up on the couch and feel sorry for myself, that's just not my style. I will allow myself one day to be weepy, and sad, and stressed, and overwhelmed. Then life will take over, my routine will set in, and I'll move on. I'll go to sleep tonight, and tomorrow will be a different day. All the issues I have to deal with will still be there, but my mental state will be refreshed, and I'll remember to take on only one challenge at at a time instead of thinking I have to conquer the whole world at once.

Wednesday, August 20, 2014

My Complicated Relationship with the Word "Help"

"Mommy, can you help me open this?"

"Mommy, can you fix this?"

"Mommy, can you wipe my tush?"

Any mother of small children has heard these phrases a million times, and has become accustomed to responding almost robotically to repeated requests for assistance: opening granola bar wrappers, tying shoes, separating tightly latched Lego pieces, and so on. And it's not just little kids who need our help; countless strangers can use our help throughout our days, whether it's picking up a coin they dropped or holding a door for someone who has their arms full. I guess it can depend on what part of the country you live in, but I'd like to think that more often than not, in this country we want to help people when we can.

I like to help; I really do. But I have a few problems in that department. I usually wait to be asked to help before offering it (something I have to work on every day), and I'm usually the one needing help (but not asking for it); we'll get to that conundrum in a few paragraphs. Living for so many years in a military world where everyone helps each other get through being away from loved ones, helping is part of a lifestyle. Adding to that lifestyle is being in a community of military spouses and moms whose generosity in the help department (in my opinion) is unmatched...except for maybe Mother Theresa :).

But my struggle with helping these days isn't a lack of willingness to help; it's the physical limits I have in my ability to help, which causes no small amount of guilt. I can't offer to babysit someone else's kids for a bit so they can take a break for a few hours. I can't help to clean up very much after a get-together or other social event. I can't go get slices of pizza or cake or juice boxes for other people's kids at a birthday party. I can't volunteer to do anything that requires standing for more than a minute or two or being outside on a warm (or hotter) day. Even though I wasn't the world's best helper when I was able-bodied, it's devastating to not be able to reciprocate the incredible amounts of help I get from other people now.

Not being one to wallow in self-pity or useless guilt for too long (as compared to useful guilt), I'm trying hard to focus on the things I can help with. There are lots of things I can do for the kids, and thankfully they have no problem asking me for help with things they are old enough to know I can do. I use a walker with a small basket at home, and while I have to take rest breaks often, I can take care of laundry, pick up most toys with my "claw" grabber, bathe the boys, wipe the counters, and put away groceries. I volunteer at our boys' school in the classroom, where I can sit and help kids with reading and writing. I can read to my younger son at the library. But it's not enough; I often hover on the line between not feeling like doing something and not physically being able to do something. It can be hard to figure out where that line is between pushing your limits in a good way and pushing yourself too hard and paying the price for overdoing it. I often find that when I offer to help with something I'm turned down, but the person getting the offer (usually my husband) is pretty happy just that I asked.

Which leads me into the flip/other side of my relationship with "help." People ask me if I need their help all the time, which is understandable. I'm always out and about with either my walker or electric scooter, and most strangers (around here in Tucson, anyway) are just plain nice. Sometimes I'm good to go by myself, and sometimes I accept; more so now than even just a couple of years ago. Accepting help has been hard for me, and asking for it even harder. Call it a pride thing or a Cuban/Latino thing. I just say that I feel bad taking time out of someone's day to do something for me.

Then I realize I'm just being stupid. People usually don't offer to help unless they really want to and intend to do it if their offer is accepted. People feel good about helping others, and especially if they're helping someone who's disabled. I don't want to be that bitter old person with a walker getting pissed off at people who just want to hold a door open, yelling "I can do it my damn self!!" I travel alone quite a bit for my work, and I've accepted the fact that I NEED help from strangers on occasion. Like getting a suitcase off the belt at baggage claim. Try doing that from a seated position on a scooter with a bunch of people crowded around. NOT easy! Or just needing an arm from a Southwest Airlines employee to get from my scooter at the end of the jetway to my seat on the plane.

So what's my takeaway or life lesson from all of this? I guess it's that "help" is a complex concept that can be difficult to master from either being the helper or the helped. It can be a sensitive issue for a lot of people. You can feel judged for not helping enough, or find yourself judging others who don't help as much as you think they should. You can feel totally comfortable with asking strangers for help, make life incredibly difficult by never asking, or take advantage of others by relying too much on others. I think it's a balancing act for everyone. For my part, I'm working on finding more opportunities to help others in ways that aren't physical but still contribute in a meaningful way. Maybe that's why more people don't offer to help others--because they think it always has to be hard work. As for me, I'm happy every time I discover new ways to help our family, and the kindness of strangers everywhere I travel lifts my veil of cynicism just a little bit more with every trip I take.

Saturday, August 2, 2014

Conquering the Mountains with MS: Space, Big Thunder, Splash...

I'm not the first person with multiple sclerosis to visit Disneyland and California Adventure, and I certainly won't be the last. But just as MS is a unique experience for every person who has it, a visit to the Happiest Place on Earth is equally unique for every MSer because there are so many variables involved. Having a plan of attack for each day at a theme park when you have two young children is challenging enough; but we're masochists, so we wanted to throw a mom with a scooter and sensitivity to heat into the mix!

Fortunately, Americans would be hard-pressed to find a more accessible place than a Disney park. There was a lot of controversy about a year ago when Disney changed the rules for people in wheelchairs or scooters who wanted to go on rides because so many people were cheating the system. Can you believe people were actually hiring disabled individuals to travel with them at the parks so they could all get on rides faster?? Unbelievable. Anyway, it used to be that if you were in a wheelchair or scooter, you would enter the ride through the exit and more or less get on the ride right away. For many of the older rides, that's still the case, simply because of space limitations and the way the ride works. But for the bigger and newer rides, disabled riders and their families now get their tickets scanned at the ride exits and are given a return time--usually within an hour or less, which is actually pretty nice because it doesn't interfere with the FastPass system. For other rides, we waited in the normal line for part of the time, then got diverted to an elevator or wheelchair ramp in a back hallway.

Using this system--essentially a combination of waiting in line, not waiting in line at all, getting scanned at the exit, and using the regular FastPass tickets, we never waited in line for more than 30 minutes despite the fact that Disneyland was PACKED all three days that we were there. It was hot with a bit of humidity, but definitely not Arizona hot, and the cool breeze off the Pacific Ocean was absolute heaven in the shade. This, along with drinking cold water and finding shade whenever possible--even if that meant sharing a tight space under a tree with a large Malaysian family--made the heat quite tolerable.

So on to the fun stuff! In the space of three days, the four of us went on 30 rides and saw several shows. I was able to get on every ride, with varying levels of ease and difficulty. By far the easiest was the Many Adventures of Winnie the Pooh because I was able to stay in the wheelchair I had to transfer into from my scooter. By far the hardest--and most embarrassing--was Space Mountain. I tried four different ways to get my right leg to bend (which it refuses to do when I feel nervous under pressure) with no luck. The very kind and patient attendant finally brought out a padded slide, believe it or not! This finally worked, and getting out of all the rides was much easier than getting in. We weren't sure how the boys (ages 6 and 4) were going to do on the "scary" rides with drops, but they loved them all, including all the Mountain rides. I thought our youngest would freak out during that huge drop on Splash Mountain, but it looks like he's going to be our adrenaline junkie. And then, there was the meet-and-greet with Captain America. This picture pretty much says it all.

In addition to the rides, we did a lot of great stuff. Our youngest son is a natural comedian and performer, so we weren't surprised that he was falling out of his seat and had his head on a swivel throughout the entire Aladdin Broadway-style show at California Adventure, as well as during the Mickey's Soundsational parade at Disneyland (or any other musical performance in either park). Our older son loves to build, so we spent what felt like hours in the Star Wars store in Tomorrowland building light sabers and R2-D2 figures. We went to a character breakfast at the Plaza Inn during our second morning at the parks, and took lots of great pictures. I highly recommend the Mickey-shaped waffles with banana caramel sauce.

Like any trip to a theme park, we had a few challenges and mishaps, but we overcame all of them. The hotel was a mess, even though it was a Radisson and we had high expectations because of the chain's reputation (and past experience at other Radissons). Poor management, poor room quality, a broken lift system on the accessible shuttle, horrible food at the restaurant...the list goes on. But we managed, and it's hard to complain when the room is free (we used my husband's points). By the third day, the boys started having meltdowns before we even reached the parks from being off their normal sleep schedule, but we alternated carrying them and distracting them with rides, and they (and we) survived. My husband accidentally left his backpack (with the car keys in it) on Main Street after we watched the parade, but a cast member turned it in right away to lost and found and we got it back intact.

Trust me when I tell you we were ready to come home after three days at the Happiest Place on Earth. For our next trip, we will definitely stay at a hotel across or down the street from the park entrance so we can take a mid-day break for naps/rest. We couldn't do that this time since our free hotel required us to take a 20-minute shuttle ride, and they didn't do mid-day pickups or drop-offs. We will also get a room with bunk beds, ha ha! Our sleeping arrangements were terrible, but we did the best we could with the hand we were dealt. We made the mistake of buying the boys toys (like unwieldy plastic swords; blaming that one on Daddy) at the beginning of the day instead of the end, so it was a constant battle over who was going to carry them, making sure they didn't get left behind on a ride, etc.

Overall, Disneyland and California Adventure was a great experience, and I really felt like my MS wasn't a big impediment to our level of enjoyment. We did everything we wanted to do, and if I didn't feel like going through the hassle of getting on a ride, I just waited in the cool shade for my boys and people watched. When the time comes for our next visit (in a couple of years at least), we'll be ready!

Saturday, May 10, 2014

On Touching Me Without Permission...

I was going through my Twitter feed this morning and came across this really interesting article on Vox.com titled "Are you a jerk to people with disabilities without even knowing it?" The story is basically about Scope, "a British group which advocates for people with disabilities, [that] has partnered with the advertising firm Grey London and TV presenter Alex Brooker to make a clever series of ads meant to help non-disabled people avoid being awkward (and, you know, actively offensive) when interacting with people with disabilities." The ads are pretty clever, and I have to admit, it'd be pretty cool if those aired here in the US, where we think we're oh-so-PC about these sorts of things. So I thought I'd offer my own perspective on people who think they're trying to help and, in reality, really aren't.

I'd like to preface these experiences by saying that in my professional travels and encounters with strangers, people have been nothing but extraordinarily kind and generous to me. Much of this awkwardness and insensitivity is borne out of benevolent ignorance and inexperience being around people with a disability. I'm just hoping maybe it will help you understand how to perhaps approach someone the right way when that instinct to assist hits you.

The day before yesterday, I was in San Diego to give a presentation to a civic group about my new book, Border Insecurity. It was at a lovely Italian restaurant, and the presentation itself went great! I met a lot of awesome people, and as you can see in the picture of me sitting next to my trusty walker with a glass of wine in my hand, it was a relaxing and enjoyable experience. It was a tight space in the room, and people had no problem getting up and sliding chairs or tables to the side so I could squeeze through with my walker to my designated spot.

After everything was done, I walked out with the event's organizer to get to the car taking me back to my hotel. The valet guy saw us and immediately said he wanted to help me however he could. I said very casually that I was fine, I do this all the time. He insisted. I got to the small curb and did what I usually do--just turned around, stepped off the curb backwards, then pulled the walker down in front of me. However, without asking permission, the valet grabbed my arm in an attempt to support me and help.

This exact scenario happens to me frequently, where people automatically try to hold me up or touch me in some way that they feel is helpful. It is ALWAYS without asking or me granting permission, and it's pretty infuriating. How many of you reading this like having complete strangers touching you without permission? Exactly. It's also often most unhelpful because it throws my already precarious balance completely off. And just as another reminder, I do this every single day. I limp around the side of my car when I get out and pull my walker or scooter out of the trunk all by myself, then put it back in when I'm done. I get into stores or offices or restaurants--many times with a curb that needs to be negotiated--by myself. This isn't a defiant statement like my almost-4 year-old makes when he says "I can do it by myself!!" It's just that I, and other people like me, have learned through experience how to do these things for ourselves out of necessity.

This isn't to say I have a problem asking for help. Trust me, I don't! Prime example: Thursday evening getting into the car taking me TO the restaurant. My right leg has a tendency to stiffen up when I'm getting into a car, and the more I stress about hurrying up, the stiffer and straighter it gets. That night I was in a tight dress and trying to get into the rather small back seat of a Prius. I made it most of the way in, and my foot/shoe got stuck in the corner where the door hinges on to the car. I awkwardly asked the driver if he would mind helping me. I told him exactly what to do with my foot and what I would do with my leg to help it bend and get into the car. It worked out just fine. A few minutes later, I joked that traveling with MS was always an adventure, and he told me a good friend and former bandmate of his has had MS for many years, so he was familiar with the trials and tribulations of the disease. We ended up having a really great conversation for the duration of the 30-minute drive.

So the lesson I hope to impart on all you kind and generous folk who want nothing more than to genuinely help a person in need? Just ask first. Don't make any assumptions about what a disabled person can or can't do on his/her own. They managed to get around before you came upon them, and will continue to do so after you walk away. If they need something, they'll ask. And maybe sometimes they won't because they don't want to bother anyone, but they'll LOVE the fact that you asked first, especially if it involves bodily contact. In the meantime, keep opening doors, picking up things that have been dropped, or grabbing an item that is just out of reach, because these are all things we should strive to do regardless of another person's abilities :).

Sunday, May 4, 2014

My Response to a Question about "That Sh*t on Your Leg"

I have to apologize first and foremost about the crude blog post title. Rest assured this isn't my usual language, but quoted from someone else. One of the hazards of writing for a large media outlet like Breitbart Texas is that you open yourself up for the general public to criticize or question. Trust me when I tell you the public does NOT hold anything back in the anonymous space known as the comments section of a story.

Several days ago, my managing director at Breitbart agreed to post the video of my interview on The Tavis Smiley Show from this past week, despite the fact he knew the mostly hard-core conservative readership might not agree with my more moderate opinions about how to tackle the illegal immigration problem. We talked about other border security-related stuff in my book, but that's what people would likely zero in on. However, he felt it was important to offer different voices and points of view, so they posted and we braced for some serious heat...that didn't come. Honestly, I was surprised, although I could chalk it up to maybe no one wanted to sit through the roughly 13-minute video. The initial comments criticized the show's host (who is a known liberal), but nothing about my views that was negative.

So imagine my surprise when I saw this comment from "1bimbo":


what the f*ck is that sh*t on her leg, take a day off and heal up for crisake

Again, my apologies for the foul language, but it's not mine :). To give you some context, here's a screen still from my interview that Breitbart Texas used for the story:






If you take a look at my right leg, there's certainly an odd contraption attached to it. While most of my interview was conducted showing me from the chest up, there were some shots of my entire body where this device was clearly shown. It must certainly have seemed strange to "1bimbo," who apparently thought I had it on as a result of some injury I could stay home and heal from before appearing on national television.

So in response to "1bimbo" and anyone else who might be curious about "that sh*t on [my] leg," it is called a WalkAide, and it's an electronic stimulation device that essentially keeps me from falling flat on my face. If you're reading this blog for the first time, I'll tell you that I've had multiple sclerosis for over nine years, and one of my symptoms is something called drop foot. Basically, when I take a step, my brain is unable to make my right foot pivot up to clear the ground when my right leg swings forward. As a result, my foot just flops down, and since I can't lift my right leg up at the knee either, I have to swing my right leg around in a wide arc just to walk. Amusing, I assure you. You can actually see this pretty cool video of the difference a WalkAide can make in a person with MS-induced drop foot.


Enter the WalkAide (or the competing device, called the Bioness L300):





Inside the cuff are two electrodes that are placed in the exact spot where a small electric jolt can stimulate my peroneal nerve. When I get that jolt with every step, through a reflex action my foot is forced to flex at the ankle, which allows it to clear the ground when I take a relatively normal step. Do you see that little box with the blue knob? Inside that box is a tilt sensor exactly like the one that's in your smart phone and makes your screen rotate when you change the position of your phone. The specialists calibrate the timing between that sensor and the electrodes to make sure it's perfect every time I take a step.

Does the WalkAide stick out? Sometimes. I can wear it under my boot-cut jeans, capris, and work slacks with no trouble. I'm still trying to figure out whether to cut holes for the electrodes in my (rather expensive) skinny jeans or just convert them into cutoffs. The device is obvious when I wear a dress, of course, and I get asked a lot about it. 99 times out of 100, people think I have some sort of injury or am recovering from surgery when they see it. I mean, how common is it for a young and (I'm told) relatively attractive professional woman to be using a walker or electric scooter? The producers of the show asked me if I'd be comfortable talking about my MS if Tavis wanted to address the device or just chat about my background, and I said I'd be more than happy to; they even had a printout of this blog! But in the 13 minutes we had to talk, we (and happily so) had more than enough ground to cover with just the book.


When people do ask, I tell them I have MS and the cuff is a device that helps me walk better. Usually after I give them a demonstration (there's a little test button on the control box), they're fascinated and so excited that I can take advantage of medical technology. I also tell them their tax dollars paid for it and thank them profusely, since I got it through the Veterans Administration. The reaction is ALWAYS, "I'm so happy my tax dollars are finally going towards something useful!" That usually makes an interaction that started out awkwardly (what do you say when someone tells you they have a lifelong chronic disease with no cure?) much more comfortable by the end. 


So, Mr. or Ms. "1bimbo," there's your answer. And as much as I'd like to take a day off and heal up before appearing on national television, MS just doesn't work that way. I'll take it from your lack of response to my MUCH shorter--and still very civilized--response than this one below your comment that you have been sufficiently placated. Oh, and no apology necessary.