Marley and Me

I saw a pulmonologist recently who concluded that my lungs are under inflated. Apparently this is yet another unexpected result of my nervous system forsaking me; I either have a poorly functioning diaphragm or poorly functioning auxiliary muscles that are necessary for respiration. Regardless, it means that I am supposed to reinflate my lungs at least once a day using a fancy version of a BiPAP machine. As there seems to be no convenient time to wear a mask on my face during the day, I try to wear it at night. This is inconvenient on several levels: a) I am a classy wide open mouth breather, so the mask that I am best suited for looks pretty much like a snorkel.  I do not know if you have ever slept with a snorkel on your face, but it is far from what I consider comfortable. b) In order to prevent the air from leaking, the mask needs to be strapped on tightly. Consequently, in addition to causing abrasions and bruising on the bridge of my nose, I am also predisposed to clogged pores resulting in a variety of aesthetically unfortunate blemishes. c) There is no possible way to read while wearing a mask. Although I originally hoped this would not be a problem, as it turns out, it is.

An awful thing happens to me in the middle of the night.  Inevitably I wake up at some point because I cannot move and my legs have spasmed into a position that is causing one or both legs a considerable amount of pain. I generally attempt to activate some sort of intentional movement that might resolve the pain, but more often than not I am forced to wake up my mom. Then, once my mom's sleep has been interrupted and I am fixed, I try to get back to sleep. This is where things get dicey, because if I cannot fall back to sleep within about five minutes I start to think. Generally, when not wearing the mask, I mitigate my thoughts by forcing myself to read. Without this possibility, however, I am left alone with my brain. And at night my brain is a surprisingly in-hospitable place to be.

Let me see, where did my thoughts start the other night? I think it was something along the lines of I will never have the chance to have a crush on anyone or for anyone to have a crush on me ever again. Then I remember how much fun it is to like someone or to feel liked by someone. Then I imagine the idea of living the rest of my life without feeling that type of emotion again.  I end up with such an acute sense of loneliness that breathing, even with my fancy BiPAP machine, gets hard. I reach the conclusion that I can handle one of two things: living the rest of my life with this disease, or living the rest of my life alone. But not both, both is where I draw my metaphorical line.

Then there follows a cascade of thoughts that go downhill from there. I hesitate to articulate how sad it can become. While I once was confident enough to make the first move or even to flirt shamelessly, I am now a bit of an internal disaster. I understand that relationships always necessitate a certain level of risk, but if I venture to admit that I like another person, imagine all the potentially disastrous consequences: the person could rebuff my feelings and I would feel embarrassed and rejected and ridiculous, or even more frightening, the person could reciprocate my feelings. What then? Is it even possible to be someone's partner with essentially zero mobility? I cannot help with yard work, or do the dishes or the laundry. And even more distressingly, I want to be with someone who feels the same level of passion towards life as I once did; as I still do. I wonder though, what good is that passion when I cannot hike or run or do any of the innumerable things that I took completely for granted until I turned 19? I would want my imaginary partner to enjoy these things without me. Is that fair? Is it fair to offer someone long-term companionship without any guarantee of long-term accompaniment? I am 100% confident in my ability to love unconditionally, but at the end of the day is it possible that just my love could actually be enough?

There are an infinite number of thoughts that follow but the gist is that I do not want to be alone. Simultaneously though, how can I imagine someone else being happy with me when I am so, so deeply and profoundly unhappy with myself (or at least the body my self is stuck in)? Add to that the predictable uncertainty of my own future with this disease. I know life does not come with a guarantee and that when someone says, "I do" to his or her partner's better or worse, there is no way to see into the future. Unfortunately though, at this point in my post MS life, I am far too able to imagine what my "worse" might entail. And it frightens me more than anything I can even express. Is it fair then that I ask another person to share this fear with me; that I allow another person to experience a forever after with someone whose forever is so scary?

Amidst all of this pointless worry that bordered on panic, I was able to miraculously fall back to sleep at around 6 AM. Grumpy and overtired I woke up a few hours later with a dried out mouth and a sore nose from my restless night of sleep with the mask. I also had what I would like to characterize as an emotional hangover from binge thinking for so many hours. As with all hangovers, I was significantly unmotivated to get out of bed. Luckily Shelly was with me though, and after I filled her in on my evening of non-slumber, she went into triage mode. We rushed through the dreaded morning duties and headed to the Ithaca Coffee Company for a mint chocolate mocha. Once caffeinated, we followed that up with a trip to the Tompkins County SPCA.

I was hopeful that the cats and dogs would provide an adequate distraction from my mood or, at best, offer some type of mental catharsis.  However, it too had the potential to frustrate me. I enjoy looking at the dogs and cats, but I yearn to pet them and hold them and squat down onto the floor to let them climb all over me. I feared that based on my mood no matter what we planned to do, it would not be tremendously fun. Unfortunately my ideas for fun are rarely in line with my body's abilities.

What happened next was a combination of heartbreaking and divine.  We went to the SPCA and found Marley, a 3 1/2 month old mutt who I immediately fell madly in love with. And rather than shun me or avoid me because of the six scary wheels on my wheelchair, as dogs sometimes do, Marley repeatedly jumped with all four of her gangly puppy legs onto my lap where she would kiss my nose and allow me to – for the first time in longer that I can remember – pet her with my cheek. I never thought I would be in a position to miss something as simple as petting a dog, but I do.  Every single day.  One thing about Izzy that I find strangely comforting is that she doesn't really enjoy being scratched or fawned over. She seems completely content to curl up against my legs at night and to occasionally violently attack me with kisses. I used to wish she was slightly more cuddly, but now it is almost a relief that at least I know I am not missing out on anything my dog particularly enjoys. Still however, I miss the feeling of a dog's soft fur in between my fingers and their silky ears under the palms of my hands.

On a day where it felt like everything I have ever lost was working in unison to chew holes in my heart, Marley reminded me that every once in a while love still trumps pain. It might not take the pain away, but it exists in the face of a type of sadness that every once in a while threatens to swallow me whole. I don't know where I stand on the rest of my life right now, and when I think about the future I am definitely more scared than I am hopeful. But if I can focus on one moment at a time and everything that I have right now, even if everything in that moment is just a dog's fur on my cheek, that might just be enough. Today.

Flying with a Power Chair. Not First-Class.

I recently completed my first intercontinental trip with my power chair, Steven. I was nervous about the trip in the weeks prior and made several phone calls to United Airlines to make sure that all legs of the journey would run smoothly. Before I left I even googled "air travel with a power chair" to see if there were any helpful tips. One of the first tips I found stated this piece of helpful advice: if possible, fly first-class. As that was probably the least helpful tidbit of information I stumbled across, I thought I would document my own experiences so that someone in my same position (unable to afford a first-class ticket) might have more success than I did.

I flew out of Elmira, New York on a plane roughly two times the size of my parents driveway. Despite the size of the plane however, everything went smoothly. We flew from Elmira to Detroit and then eventually (on a significantly larger plane) from Detroit to Sacramento. The trip went so seamlessly in fact that I let my apprehensions about the flights home completely dissipate. That was a mistake.

Flight number one departing Sacramento was on a relatively small jet approximately the size of the school bus. As Shelly and Kelly and I had arrived at the airport three hours prior to our flight we were confident that the United staff knew that we were coming. In no great rush we made our way to the gate, stopping to buy uncomfortable, overpriced neck pillows on the way. Once safely at the gate we waited to pre-board the plane without any concerns. Indeed it was not until the boarding began and we got to the end of the jetway during the boarding process that someone approached me and said: "I am sorry ma'am, but we don't think this plane can accommodate your wheelchair." They asked me to reiterate the specifications of my chair (50 inches tall, 27 inches wide, 360 pounds) and reacted to these numbers with surprise and concern before saying, "There is no way your chair will fit on this plane."

I am well aware that employees of airlines are the recipients of hundreds of people's frustrations and disappointments on a daily basis, so I tried to maintain my composure but found myself a) frustrated, b) embarrassed, c) disgusted and d) annoyed (I know that at least three of those alphabetically listed emotions are redundant).  I calmly explained to the attendant that I had spent probably an hour and a half on the phone with United prior to our trip, and the airline ensured me that Steven could be accommodated on every plane I was ticketed for. (In fact, one woman spoke to me condescendingly saying something along the lines of: "your chair has to fit, it's the law.")  Nonetheless, the attendant helping us expressed her sympathy and politely directed the three of us back through security and to the ticketing counter.

There, the three of us stood around for another hour while a ticketing agent expressed her frustration that there were no other redeye options on United from Sacramento to either Elmira or Syracuse that night. She eventually gave up and turned us over to the US Air people to try to figure out how to get us home.   Finally the US Air attendant found a flight that would get us into Syracuse the following morning at 9:30 AM, a full hour earlier than we were supposed to arrive with our originally booked tickets. It was an incredibly indirect flight, but they at least upgraded our tickets from Sacramento to Phoenix Arizona. I was sad that the flight lasted only two hours because our first-class seats seemed so luxurious (traveling with a disability actually is easier in first-class!) Especially when compared with the seats we ended up in for the second leg of our journey (the longest leg) which took us from Phoenix to Philadelphia.

The most noteworthy part of the second flight took place before the other passengers had even boarded the plane.  The three of us were already snugly and uncomfortably in our seats after pre-boarding, when the airline attendant halted the boarding process so one of us could exit the plane to help move Steven from the jetway into the underbelly of the airplane. Politely, Kelly got up and offered her assistance. Once off the plane, she was greeted by a borderline irate, unkempt looking man with a pseudo-official looking US Air vest. That is when the fight ensued:

Long-haired, pseudo-official looking US Air man: I can't figure out how to get this thing to go.

Kelly: It is in neutral. You will need to push it.

US Air man: What do you mean I have to push it? Do you have any idea how far I need to go?

Kelly: Yes. I am sorry but it needs to be in neutral so you can lock it into place once it is on the plane.  Plus it is challenging to maneuver if you aren't used to it.

US Air man: You don't need to tell me how to do my job.  I spend at least five hours a day playing video games.  I know what I am doing.  I will be fine driving it.

Kelly: I am not trying to tell you how to do your job.  This is a $32,000 wheelchair and my friend's life depends on it, so it needs to be kept in neutral.  I am happy to help you push it up the jetway.

The man seemed to have no problem treating a ticketed passenger with complete disregard.  As Kelly helped the US Air man push the chair up the passenger lined jetway, the snarky interchange continued.

US Air man (redundantly):  This is ridiculous, I don't appreciate you telling me how to do my job.

Kelly (having stopped pushing, looked at the now fully irate man): Listen, we have had a really long day, I am trying to help you and I would appreciate it if you could show us just the smallest bit of kindness.

One of the 700 reasons I love Kelly is because she has a unique ability to maintain patience, decorum and maturity in even the most stressful of circumstances.  Ultimately, these qualities weren't lost on the irate man after all.  Before our flight departed, he sought us out to apologetically inform us that Steven was safely on board.

Suffice to say we departed on time and arrived in Philadelphia five interminable hours later. Our flight from Philadelphia to Syracuse involved a plane roughly the size of a school bus. In fact, it might have been smaller than your average school bus. When we arrived at the gate and I glanced out the window at our next ride I laughed. If they could not accommodate us on the larger plane out of Sacramento, there was no way the little prop jet would suffice. I was certain. And at that point in the journey, I almost was too tired to care. Surprisingly, they proved me wrong. Somehow, someway these three endearingly determined employees got Steven, and even more impressively, me onto the plane. An hour and a half later we were finally back in the Syracuse.


That was a long story so let me clarify a few tips for people traveling in power wheelchairs:

• Know absolutely everything about your wheelchair.  Know the height, the width, the depth, the weight. Know about your battery. Is it a dry or wet cell battery?  Know how to put your chair in neutral and know how to lock it in place. 

• Bring a travel companion who is your advocate. I used to travel alone, and was obviously much more functional at that point. If you do have to travel alone, however, practice putting yourself in stressful and exasperating situations while still maintaining your composure and your ability to self advocate. The above is not my strong suit, that is why I no longer travel alone. (Also, I am unable to feed myself, drink or otherwise survive without the help of others.)

• Call the airline prior to your trip and insist that the specifications of your chair are double checked with every single leg of the upcoming journey. Get the names of the people you talk to. Make sure that the people you talk to document every thing in the computer next to your name so that all the airline personnel know you are coming well before you are scheduled to board.

• Oh yes, and how could I forget – if possible fly first-class. It is a hell of a lot easier.

No Racing, Plenty of Pain

Imagine my dismay when against all examples of common sense, not just one but multiple people sent me copies of an article in the New York Times last week that profiled an 18-year-old athlete with MS. Apparently, against all odds, the girl was able to continue performing as an elite track runner despite being diagnosed with MS. As anyone who knows me well probably knows, I was once a runner too – albeit not quite so elite. And when I was diagnosed with MS in September 1997 I never ran another step.

http://www.nytimes.com/2014/03/04/sports/for-runner-with-ms-no-pain-while-racing-no-feeling-at-the-finish.html?hp&_r=4

The article frustrated me on multiple levels.

1. I feel as though the article lead readers to believe that with hard work and determination MS symptoms can be controlled or overcome. There is no truth to that sentiment whatsoever.

2. The girl in the article is remarkably talented, hard-working and obviously determined. However, she is not suffering from MS. She lives with the diagnosis, and will always carry the fear associated with the disease, but God willing she will continue to avoid suffering the effects of the disease that has the potential to ravage her 18-year-old body.

3. Healthy individuals reading that article are led, in my opinion, to believe that multiple sclerosis is not a disease that warrants donations for research. If I were looking to make a tax –deductible donation to a worthy cause, I would likely not send my money to the MS society (or to even the more worthy MS related causes) because nothing about that article made the disease seem problematic. In fact, there was a time in my running career that I might have read that article and been jealous of the girl because it seemed as though the effects of the disease helped her to run faster.

4. In addition to blatantly misrepresenting the disease, the article left me with what I like to characterize as ugly emotions: anger, jealousy, self-pity and more anger. As I read the hundreds of comments at the end of the article, I was confronted with additional cause for indignation. It seemed that every comment was another MS patient telling another story of athletic triumph. Let me clarify: I want no one to suffer the same disease course as I have. No one. Least of all an 18-year-old track runner. However, as someone who has slowly lost every working appendage to this disease, I was not left with one positive emotion after reading the article.

5. Anger, for me, is probably the least productive emotion I experience. Immediately after reading the 178th comment, I composed a borderline irate email to my doctor communicating a high level of frustration. He is a great doctor, and despite the fact that I have what my friend calls "MS on crack", I genuinely do not question either his level of expertise, his professionalism or his desire to help me. Still, however, who do I blame for the fact that this disease has robbed me of things I never even imagined I would miss? So I asked him, do I even have MS? Why can't anyone stop the progression? Why can't you fix me? Why, why, why!! I also direct quite a bit of anger at a God that I no longer believe has any interest in my health. And jealousy. Man the jealousy… Isn't envy one of the seven deadly sins? How though, how can I not envy those who have the same disease as I do and who, 20 years after being diagnosed, still participate in bike races or run half marathons? How can I not envy people around me who run and walk and stand without so much as a conscious thought? How can I not envy my friends and family members who can scratch their own faces, get on and off toilets without help, get on the floor and play games with adorable small children? I don't know. And sometimes I feel like my anger and jealousy are going to strangle me from within.

I have so, so much to be grateful for. And I am usually able to keep my ugly emotions at bay and maintain my perspective. I am not going to lie though, there remains a general level of sadness in my life that rises to the surface with a much higher frequency than I would prefer, a sadness that I try desperately to ignore. I have so many things to be grateful for in my life: for my friends, for my beyond awesome caregivers, for the beautiful house my parents were able to make completely accessible for me, for my almost perfect dog, and for a self that I genuinely like in spite of the body that I hate. But seriously? If my arm strength ever returns, and I ever put my eyes on the author of that article, she had better duck if she sees me coming.