Friday, January 30, 2015

Marking My 10-Year Anniversary with MS

I was driving on Andrews Air Force Base in Maryland around noon on a sunny and cold winter day when I got the call. It was January 30, 2005, and I was an active duty Special Agent assigned to the Air Force Office of Special Investigation’s headquarters. I heard my cell phone ringing, so I pulled over to answer it.


My medical retirement in 2005
“Hi Sylvia, this is Dr. X from Neurology at Malcolm Grow Medical Center,” said the voice on the other end. I had been expecting this call.

“What can I do for you, Doc?” I asked, trying to sound cheerful.

“Well, we got your brain MRI results back, and it’s showing you have a small lesion on your corpus callosum,” Dr. X said.

“Okayyyy…” I replied, thinking that couldn’t be good.

“Between your spinal MRIs and lumbar puncture results, this is all pointing towards MS. But we need to have another symptomatic occurrence to say anything conclusive, like optic neuritis or something,” he explained.
Hiking in Guadelupe Mtns in 2005

“You know I had optic neuritis in August 2003; it was my first symptom,” I reminded him.

Dr. X paused. “Wait, let me look in your records…oh yeah, there it is. I have no idea how I missed that. Well, in that case, we can make a clinically definite diagnosis of MS.”

Just like that.

We didn’t talk much longer after that. He wanted me to make an appointment with him pretty soon so we could start talking about different treatment options and what the diagnosis would mean for my military career. After I hung up, I felt…okay. That must sound odd, considering I had just officially been diagnosed with an incurable disease. But MS generally isn’t the kind of condition that hits you over the head from one day to the next. I saw this day coming more than two years earlier, and the diagnosis was almost a relief. It meant I could get started on treatment and move out of this limbo to make some decisions about my future.

Ziplining in Park City, UT in 2007
Fast forward to today, January 30, 2015--a full decade after that fateful day. I have no idea what or how I feel. Should I be sad, or should I celebrate? My body and my abilities in no way resemble what they were like ten years ago, but I have much to be thankful for. I guess I should start my reflections by looking at each of these things.

As you may already be aware, MS is a progressive disease for which there is no cure--only a variety of treatments that slow down the progression with varying rates of success. At the time of my diagnosis, I was still able to walk, hike, ride a bicycle, and I suppose even run a little bit had I been so inclined. A few years later, I had to start using a cane on really hot days or on occasions where I would be walking longer distances. Then I moved to a walker in late 2011, a scooter in the summer of 2013, and most recently a power wheelchair for our home a couple of months ago. I can still walk short distances, but it sucks and I hate doing it. I'm exercising regularly with a special trainer to keep my legs as strong as possible since I'm using them much less at home with the power chair, but they get worse every year.
Exploring Sevilla, Spain in 2008

On the upside of the physical aspects of my MS, my upper body still works almost normally, with the exception of my hands that sometimes give me trouble writing. Mind you, I usually only have to write short notes or fill out paperwork at a doctor's office on rare occasions, so this has only been a minor inconvenience. My memory and cognitive skills are normal, so I can work and think and take care of all the administrative tasks related to managing a household. With the help of my scooter, I travel alone regularly across the country with much success, albeit with the occasional help of kind strangers and some logistical planning ahead of time.

Celebrating the 4th of July in 2009
As for the great things that have happened in my life during my ten years with MS...where do I begin? I gave birth to two amazing boys who are the light of my life, and I'm able to be a very active participant in their daily lives despite my physical limitations. I've had the chance to own and ride a motorcycle for a short while, go skiing one last time, travel to Spain, England, Italy, and Canada, help paint and renovate our first house, start my own company, and publish two books. I've been able to dance in my scooter at a Vegas nightclub with my two best friends, attend several awesome concerts and sporting events, go ziplining, help take our boys to Disneyland, and watch their soccer games.

Four-wheeling with the boys in 2013
Some of it has been easier than I ever expected and some of it has been extraordinarily difficult. I am SO blessed to live in a country with the Americans with Disabilities Act and a general public acceptance of disabled people who have to use mobility aids. I read all the time about fellow MSers or others with disabilities who live in countries that have not made moves to increase accessibility to places like government buildings or stores and restaurants whenever possible. Many people in other countries are more or less confined to their homes because they can't be as independent as they'd like, or just can't go to many places without having to be carried--a humiliating experience at best.

ASIS Security Seminar in 2014
My new walker, c. 2011
So I think I'll spend the day just reflecting on these things, and being incredibly grateful to my family, friends, and professional colleagues who have been so incredibly helpful, generous, and supportive of my and my "special needs" during the past ten years. I have no idea what the next ten years hold; maybe a cure, amazing mobility technological advances, or maybe even more hardship. I have no way of predicting what my life of that of my family will look like a decade down the road. I only know that I will maintain the same positive attitude and fighting spirit that has gotten me to this amazing place in the present. 

Monday, October 27, 2014

Why Writing a Book is Like Having a Baby

I just returned very late last night from having a BALL at the Texas Book Festival in Austin. This is my second time at the Festival, with the first being in 2011 after my first book, Cartel, was published. However, of the four book festivals I've participated in as an author, this was the first one I actually had the time to thoroughly enjoy. I wouldn't call myself a book "nerd," as so many attendees are unfortunately labeled, but I absolutely love to read. Sadly, I rarely know any authors at these festivals because I write about such niche stuff, I don't pay attention to the authors of my kids' books, and I don't read popular fiction.

So, I just picked and chose sessions that sounded interesting, and what luck did I have! I got to listen to Craig Johnson, who is the author of the Walt Longmire (um, yeah) series of books and a producer for the A&E television show. He is a complete riot, a cowboy through and through (he lives in a town with a population of 25 people), and just a really nice and humble man. I got his new book signed for my husband and took a fun photo with him.

The social stuff was also pretty great! The first night, they held an authors' after-party mixer thing that took place immediately after the $250/plate Literary Gala. I met some seriously fun people/authors there who would constitute my social circle for the next two days. It was a little crowded, but people made room for my "horse," as I like to call my scooter now--especially when in Texas.

I should confess that there was one author I really wanted to hear--and possibly meet: Lawrence Wright, who is the Pulitzer Prize-winning author of The Looming Tower, Going Clear, and most recently 13 Days (about the Camp David peace accords between Carter, Bagin, and Sadat). After I read his exposé of Scientology a couple of years ago, I went on a reading binge
about the subject and just fell in love with his writing style. Anyway, I did get to meet him (see picture), and we actually spoke at length at the authors' cocktail party on Saturday evening. It was a great conversation, until he asked me about my next book.

This is nothing against him, or any of the dozens of other people who have asked me the same thing since Cartel came out in 2011. I like to explain to people--and this explanation works much better with parents, particularly mothers--that writing and publishing a book is like having a kid. A pregnancy and the time taken to write a non-fiction book about current events is roughly the same; trust me, I've done both. Twice. The "labor" associated with getting the kid and the book out into the world can be quite painful. But goodness gracious, what a joyous day it is when the baby is born and the book hits the shelves on Pub Day! You can live off that joy for a little while...but then the midnight feedings start wearing on you, as do the constant things you have to do to promote your book and keep it fresh in people's minds. At some point, many moms and authors say after their first baby/book, "I'm never doing this again. That was great, I'm proud, I'm happy, but this is going to be an only child. I'm never going through THAT again!"

Then about 18 months to two years down the road, something we moms call pregnancy amnesia sets in. You forget about the sleepless nights, the crying, the nasty diapers, the millions of edits and revisions, the 5am radio interviews (if you're on Pacific Time like me), the book signings where five people show up, and spending two hours to get ready for a 3-minute TV news interview. You think, Huh. Maybe I could do this one more time...

And that's exactly what I did. Writing Cartel was brutal because it was my first book and I had no guidance or experience with regards to how I should pace myself. It was hard on my family, on my marriage, and on my sanity. I dreaded the moment when I had to tell my husband I wanted to write Border Insecurity because I thought he would really be against it based on our experience with Cartel. But we came to an agreement, and writing the second book was actually really enjoyable. So was having our second kid, coincidentally. We still had our sleepless nights and he had his own unique quirks that were totally different than his brother's, but we certainly felt more confident about the process.

So this brings me to the question I've been getting asked since Border Insecurity came out in April: "What's your next book going to be about?" with the variant of, "When is your next book coming out?" Now, try rephrasing the question as if you were posing it to a mother of two children whose youngest child is only six months old: "So when are you going to have a third kid?" with the variant of, "How often are you and your husband trying to get pregnant again?" Yeah, exactly.

These questions (about the next book) don't bother me because I know few people, relatively speaking, truly understand the labor involved in writing and getting a book to market. I am truly excited and proud to be a TWICE-published author of two titles that have been commercially successful by all measures. But (a) I feel like I've used up all my expertise in those two books, and (b) with two companies to run and a family to help care for--with my MS getting worse every year--I have no idea where I would find the time to write something else. I know my publisher wouldn't be happy to hear talk of being done writing books, and I also know myself and my love of researching and writing. So I'm done...for now. Until the pregnancy amnesia (for books ONLY) sets in again...

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!