I've wanted to write this blog for such a long while and I'm not quite sure why I haven't up until now.
Perhaps it’s because this is so personal. Not just for me, but for my husband.
As many of you know, I've shared plenty of personal history (some might consider TMI category, I suppose) about my struggle to become pregnant and my roller-coaster ride with fertility treatments. Oddly enough, when I wrote about these experiences, I never felt overly exposed or vulnerable.
In fact, I felt just the opposite. I felt relieved, empowered, and that way women feel when compelled not only to tell a complete stranger that her tag is sticking out of her blouse, but to tuck it back in for her. Writing about infertility felt like a responsibility to other women, to commiserate, share information, and let them know that they were not alone. Reaching out to whoever might have been reading my blog also made me feel less isolated and afraid. But that's the thing: I was writing about myself.
This blog is about my husband and so in a protective way, I’m concerned that I won't do justice to something he and millions of others fight every single day of their lives: discrimination due to disabilities. Before I wrote the following, I asked my husband if he would mind if I went there. He said go right ahead. And the stories below are the result of that blessing.
I met Rob on Christmas Day, 2010. The first thing I noticed about this gorgeous hunk of a man was that he was, well, gorgeous. There, I said it. Over six feet, McDreamy black hair, killer smile, and those crinkly-at-the-side-of-his-eyes things when he smiles. Here comes trouble, I thought.
The next thing I noticed and experienced was this quality that anyone who has ever met Rob experiences: he is one of the most genuine, likable guys in the world. Hands down, just an amazing person. He's warm, funny, self-deprecating, and smart. He’s what my father would have called a mensch.
Rob is fun. We have a joke around our house that when he has the kids and I'm out running errands, it's "Camp Daddy" where (sadly) anything and everything goes. Popcorn for breakfast and a movie at 9 a.m.? No problem. All over mom's micro-suede sofas? Again, no problem. Where I see stains, spritzes of Shout, and a potential overthrow of our household by sinister ants, he sees something fun for the kids.
As in: three kids lying on top of him, blocking his view of the TV, but (and here's where his genius come in) buying him total peace while the kids watch TV and he naps (under the human pile). Like I said, Camp Daddy.
I admit it: I'm jealous. I could never manage to tame all three of our kids (at the same time, no less), let alone give the green light to popcorn on the sofa at 9 a.m.
The next thing I noticed about Rob, I might not have noticed unless he made sure to point it out almost immediately, was that he walks with an arm crutch. At home we refer to it as his cane, but technically, it’s an arm crutch. He also told me he had MS. He told me this, point blank, and waited for some reaction from me. I wasn't sure how to react or what to say because I didn't know much about MS and I think I was still fixated on the height and the great hair. So, in my own stupidity, I said "okay" and we kept on talking.
It wasn't until a few days later that I started Googling "Multiple Sclerosis" and asking two close friends (one is a physician) what they knew about it. I listened, did a little more research and that, my friends, was the depth of my analysis. I was naively ignorant, and if that sounds redundant, that's nothing compared to the deliberate ignorance Rob encounters on a daily basis.
I read up on MS and of course, and learned so much more about it from Rob. He was diagnosed in college (when the rest of us typically have no major issues other than boyfriends, grades, and finding a job after graduation), and did not walk with a cane until his diagnosis changed from one form of MS to another about ten years ago. I learned that pre-arm crutch, he was a skier, rode horses, played ball (all kinds), traveled extensively (there are still some stories about trips to Amsterdam and other exotic locales that I can’t quite get out of the man, but give me time). In short, he was an extremely active, engaged, athletic guy. Loved playing sports, loved watching them. Still does.
I didn't see the crutch as slowing him down, although of course, some of these activities are (for) now, off-limits. And I admit, when I saw photo after photo of him doing all of these activities with his brothers and his friends, my heart broke a little bit. How could an athletic guy be forced to give up some of these things?
About a year ago, I watched an old home movie of Rob and his brother when they were both in college. Halfway through, there was a shot of Rob walking around a dormitory while his brother Jeff gave the most hilarious off-the-cuff color commentary. It was hysterical. Until I started to cry. It was the only time I have ever seen Rob without his crutch. It was a sobering moment.
In our day-to-day life, Rob is as active as any dad I know. He swims with the kids and tosses them across the pool. He schlepps the kids up the stairs. He plays ball with them. He works out regularly, and like most busy parents and professionals, he never stops moving. As a gal who can appreciate a nice set of arms on a man, whenever he returns from the gym and I ask him to "show me something" (which embarrasses the hell out of him, btw), he'll eventually concede and flex a little bicep my way. When he reads this, he is going to be so embarrassed by his too-detailed writer of a wife. Nonetheless, it’s true that he does this, LOL.
That said, for the most part, in our day to day life, when people notice Rob's cane, they smile and say nothing. If they do approach him, they typically ask what sport he was playing when he got hurt, or, if they're in a particularly spicy mood (as often happens), they’ll ask what naughty thing he did in order for me to have done that to him. LOL. I've got a few good comebacks for that one. Most people see Rob as Rob--a straight-up, tall, strong, good guy who's just living his life. I cannot tell you the shock on people's faces the few times he has said he has MS. He worries about their reaction if he mentions MS, so many times, he’ll just laugh and try to put the other person at ease and agree that he’s almost on the mend, thank you for asking.
I'm always surprised when people stop Rob because after all this time, I don't notice his cane (unless I'm tripping on it, which I’m known to do, klutz that I am). I just don't see it anymore. To be honest, except for the first weeks after meeting him, I haven't noticed it in a long time. It only hits me that Rob has MS when I realize how exhausted I am sometimes after we've been traveling or walking all over town, or just so busy that I'm ready to collapse and then it hits me: he never complains. If I'm exhausted, shouldn't he be? If he is, he doesn't say. He just does.
And now, with the back-story set, I share this with you:
There are two situations (I am sure there are more, but these are the ones that truly get under my skin) that drive me insane when it comes to how people with disabilities are treated:
1) Handicapped Parking
For God's sake people, if you do not have a handicapped sticker/permit, please do not park in a handicapped spot. You have no idea how many times someone has pulled into a handicapped spot, looks at Rob just as we were turning in to the same spot and SCREAMS, "What, are you handicapped? I'll just be a minute!" as if to justify parking there. And when Rob says, "Yes, I am" and holds up his permit, they are alternatively horrified or shocked. Often both. Is Rob (or anyone) supposed to look a certain way in order to show the world (from another car, no less!) that they are handicapped? Ugh.
I cannot tell you how ugly it can get when people realize they should not be in a handicapped spot. After they've been embarrassed they will often sometimes start swearing. At him. It's absolutely insane.
2) The Airport
Friends, this is where I can really start chapter and verse and will have to force myself not to write a dissertation, but there truly needs to be some SERIOUS re-training of airport personnel, regarding the needs of passengers with disabilities--even those just laid up with a cast for a few weeks. What happens at airports is enraging. Here are some examples to get you thinking:
When Rob and I travel, we typically put in a wheelchair request when we purchase our tickets online. Given the number of people who use wheelchairs, especially at airports, one would think that this should be a fairly simple request. One would think.
You would be amazed at how many times we have checked our bags, spotted several attendants with wheelchairs, but were not able to take the wheelchair that the attendant was overseeing (for lack of a better word) because that wheelchair needed to go back to "base" or because the dispatcher had not specifically been called to send that very wheelchair to us. So, follow the fabulously inefficient model here: in order to get a wheelchair, even if a handful of wheelchairs and their respective attendants are standing by, chances are, the person who checks in your bags, has to "call" for a wheelchair, specifically for you. This happened a few weeks ago in Boston. I was so stymied by having my husband have to stand around for however long it would take to get a wheelchair, that I approached an attendant (who had basically seen us approach and not offered any assistance whatsoever) and asked her if she could take us to security. She looked at her colleague (who also was "guarding" an empty wheelchair) and said, "I guess so" and did us the great honor of getting us to our gate. As if she was doing us the greatest favor on earth, and not her job, which, it appeared to me, to be to help people who need wheelchairs.
Does your head hurt yet?
On a trip just before that one, a wheelchair attendant offered a chair to Rob, asked us our gate number, and we started toward security. About a few hundred feet into our cross-airport journey, he pulled up to a bank of chairs and asked my husband to get out of the wheelchair and wait for another one, as his had to be "returned" to base. I'm not joking. I wanted to make sure I had heard him correctly. "You want him to get out of the chair, with his cane, and his laptop, and for us to sit here while some other wheelchair is called to take us to our gate?"
"Yes" the man replied.
We refused. I'm only a little embarrassed to admit that I "went all Brooklyn" (as my husband calls it), on the attendant, as I am known to do whenever I cross into a certain stupidity-meets-no-tolerance zone.
There are, however, some benefits to having to use a wheelchair when going through an airport. Not having to wait in the long security line is sometimes one of them. But it typically stops being a benefit the moment it is time to remove your shoes, belts, metal objects, and go through the x-ray security walk of shame. Let me break it down for you.
It starts when we approach security, and some ill-trained, ill-mannered dope at TSA will ask me and NOT my husband "Can he walk through security by himself?"
The first time this happened, I didn't pay much attention to it. Security is a busy place and so I simply answered the gentleman's question.
The next and almost-every-other-time-after-that it happened, I looked at Rob, looked back at the TSA agent and said, "You can ask my husband. He is a thinking, functioning human being." Even with that, they often don't get it. It is condescending beyond belief for anyone to conclude that a person in a wheelchair cannot carry on a conversation!
At this point, the wheelchair attendant typically starts ripping things from Rob's hands like his shoes, cane, belt, etc., and, at rapid speed, jams them into five different bins, with no concern for keeping our belongings together. They just get dispersed as quickly as possible and when I finally walk through security myself, I have to dig around and find all of his things.
As Rob approaches the actual full-body scan, one or two things can happen: a thinking human being will ask him if he can stand with his hands over his head (yes) and walk through on his own (yes, with someone on the other side to lend a hand). Or…
Many times, Rob has been subjected to searches in rooms right off the security area, has had his bags run through more than once or twice, and has had his crutch x-rayed so many times, I'm certain it will crumble from radiation exposure.
They just whisk him off. Just like that.
Honest to God.
The one thing regarding all of this that does make me feel terribly ashamed has nothing to do with TSA, but with me. Because the truth of the matter is that until I met Rob, I gave only a passing thought to the day-to-day issues facing people with disabilities. While I never parked in a handicapped parking spot, I am guilty of using the handicapped bathroom at Bloomingdales. I never considered just how difficult things can be to navigate for someone with minor or major disabilities. That has completely changed.
Rob is one of the lucky ones. He walks on his own, is agile, strong, and fit. I cannot imagine how frustrating it must be for someone who cannot get up on their own steam, to have to depend on others for so many needs. My eyes have been opened so widely, that if I was ignorant before, I am overly-aware and disheartened at some of the things that jump out at me on a daily basis.
I now notice immediately if parking lots, restaurants, or shopping malls have enough handicapped parking spots available for those who need them. I'm sort of like I was when I was trying to get pregnant and all I saw was bulging pregnant bellies at every turn. Now I can spot in an instant the establishments which have adequate entryways, bathrooms, and parking facilities for handicapped customers.
When someone goes the extra mile for Rob, he is always extremely appreciative and of course, so am I. Many kind, caring, and wonderful people jump to open a door for him and each time, he still looks surprised, I think, because he is the one who will usually hold open a door for someone else, but also, because he is able to do these things for himself. Like I said, he is one of the lucky ones.
But I still think I got the better deal.
Just some things to think about.
Until next time,