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.

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!