Rabu, 30 April 2014

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 ofI 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.

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