So, I am on disability and you would think that I would have ample time to sit down, fight with my dictation software and write a freaking blog. In my defense, I have managed to be insanely busy for someone with no job. Mostly boring disease-related appointments, but I am also getting lessons once a week from a grad student in the speech and pathology lab at Ithaca College in hopes that I might eventually master this software. (It is my hopefully not futile attempt to train the dragon, which in my opinion is a pretty stupid name for this voice dictation software.) Excuses aside, I desperately need to write more often. Which is why I would like to publish a goal for myself: I would like to write a blog, long or short, profound or not, at least twice a month. I'd like to say once a week, but I'm being realistic. In my first effort at achieving said goal, I am going to narrow down my previous ambition to write about all of my caregivers, and write about just one for starters: Meg.
I should further preface this blog by saying that the realization that I would need to pay someone in order to survive on my own was not one I reached easily.
It was not shocking to realize that I needed some sort of help. After all, it was very shortly after I was diagnosed that I designated someone to "link" with me if I ever consumed any alcohol or walked far enough to elicit fatigue. And though I found my need to link exceptionally embarrassing at the time, it really was not that big of a deal. (Especially because, at 19, I was blessed enough to be diagnosed while living with my college roommate—one of my closest friends in the entire world.) However, explaining that I could not walk without holding on to someone is at least somewhat embarrassing, especially because at the time I had no idea how many embarrassing things I would eventually have to request of others.
So the need for a certain amount of caregiving came with the disease, neither of which I much appreciated. At least initially though, the minimal care that I required was the type of care that came built-in with close friendships, and fortunately for me I had a surplus of those.
Fast forward to 2008. I lived alone in a two-bedroom apartment in downtown Baltimore, and although Izzy was an incredibly loyal roommate, she was not much of a therapy dog. Thus, after one too many falls while living alone, I gave up and advertised on craigslist for a roommate. Mine was a tricky craigslist ad because I knew I had the potential to become a complicated roommate. At that time, I was still fully independent but struggling; I could get my wheelchair in and out of my own car, cook my own relatively pathetic dinners, shower without assistance, etc. Consequently, I settled on a craigslist ad that explained that I had progressive MS, used a wheelchair and would consider a reduction in rent in exchange for help around the apartment and for help with my 65 pound dog. I wrote the ad sometime in early August, posted it and went to the gym. Two hours later I returned home to an email from Meg. The following day she came to see the apartment, liked it, and the rest is history. Little did either of us know that we were about to forge a roommate friendship that neither of us could ever have anticipated. The two of us lived together for three years, and within that time I went from my aforementioned pseudo-independent self to utter and complete dependence on someone else. I suppose, like most things MS related, it progressed somewhat slowly: first I needed help with small things like getting my wheelchair in and out of my car. Then I needed help in the kitchen – especially after swimming. Three years later, however, I could not even shave my own armpits without help. Suffice to say, during this time Meg morphed from a stranger and roommate to a roommate/gourmet chef/caregiver/housekeeper and, above all, a friend.
I had been living with Meg for approximately 4 months when I enjoyed my first somewhat extended stay at Johns Hopkins Hospital. I don't even remember what was wrong with me at the time. What I do remember was Meg visiting me every single day; in fact, there were days that she visited me more than once. And though she was a grad student at Hopkins at the time, her classes were not inside the hospital. Nor was she under any obligation to visit me, bring me home made food and magazines, or graciously share our apartment with my mom and take care of my dog while I was in the hospital.
As one year turned into two years, my friendship with Meg had strengthened, but unfortunately my body had not. The trajectory of my disability had become increasingly steep. And at the risk of divulging entirely too much information, my bladder had quickly usurped my legs as a central stressor in my life. I don't know if this is common to all MS patients, but I had (and still have) what is known as a neurogenic bladder. It seems to me that neurogenic is just a fancy word for fucked up: you have to pee more often then you should, your bladder does not empty itself properly, you have extreme urgency, occasional bladder spasms and you get a higher than average number of urinary tract infections. My bladder was a pain in the ass throughout the entirety of my life with MS, but as my mobility declined, the bladder problems were magnified exponentially. It's hard to have an urgent and spastic bladder when you cannot run to the bathroom. Hopefully you get what I'm saying without further details. Long story short, I consulted with two different urologists in Baltimore and made the difficult decision to go through with a fancy and relatively complex surgery that would enable me to pee out of my belly button.
Shockingly, the surgery did not go 100 percent according to plan. Once again though, Meg was with me throughout. Two days after the surgery, I developed an infection beneath one of the staples. When they removed the staples to treat the infection, the small laceration turned in to a wound that was seriously the most disgusting thing I had ever seen on my own body. When the staple was removed, nothing held my skin together and a small laceration grew first into a dime sized wound and then ultimately into a wound the size of an avocado. And so began the beginning of an entirely new caregiving expectation: wound treatment. (At this point, maybe I should point out that Meg was not in grad school to be a nurse, she wanted to be an epidemiologist – not someone who packed wounds.)
Am I the only person who had no idea what wound care required? I was in the hospital (or one of three hospitals and one nursing home) for more than four weeks and when I got out, the wound was not even close to healed. It needed to be packed with this weird foam material and eventually attached to a wound vac which would suck the gunk out of my wound as I went about my daily business. Add to that, while I waited for my belly button to heal in order to catheterize, I had a suprapubic tube draining my bladder into a large plastic bag. I was quite a vision to behold: a bag of urine attached to the bottom of my wheelchair, a weird metal wound vac attached to the back of my wheelchair, piles of bandages on my stomach and my general sickly appearance (I had lost close to 20 pounds and was disgustingly pale after a month in the hospital). To get back to my point, Meg dealt with all of this on a daily basis: cleaning out my wound, emptying bags of pee, helping me cover the wound in order to shower and all the while cooking dinner, cleaning the apartment, taking care of my dog, and being just generally awesome enough that somehow, despite the fact that I was in a bad, bad place emotionally and physically, I did not wheel myself into the inner harbor.
I actually have no idea how to adequately express my gratitude to this stranger turned friend who I met on craigslist. I have asked myself many times if I would have done what she did. And I honestly cannot answer the question. She drove to Annapolis with her boyfriend to visit me in a nursing home, she spent her labor day night in the Johns Hopkins emergency room with me, she learned how to flush my central line, she cleaned my bathroom, did my laundry, and took my car for oil changes more times than I can even count. Really, were I completely healthy, had I never experienced any of these things firsthand, I do not know if I could have done it.
It was not all rainbows and butterflies I suppose. Meg grew to hate her job in Baltimore, and was never a huge fan of the city itself. Add to that, she met her now fiancé in New York City and was desperate to find a job there. Throughout her almost two-year long-distance relationship, there were months when she was away from Baltimore more often than she was around, which left me in a tricky caregiving predicament. The larger problem, though, was that I could not even conceive that her frustration with Baltimore and her absence on the weekends was not inextricably tied to me (nevermind the fact that she had an adoring boyfriend who lived three hours away). Consequently, I attributed every bad mood, every weekend away and every fit of rage to myself and to my disease.
Meg moved out in July 2011. Luckily, in spite of our nontraditional tenure as roommates, we are somehow still friends. At this point, I am pretty sure that her fits of rage have less to do with me than with her fiery, Irish personality. And, though frustrating to figure out at the time, her frequent absences led me to hire Kristen. And Kristen, who I intend to write about next, was well worth any and all of my frustrations. Two years later, I still need a much more productive way to deal with the sense of guilt that this disease elicits. Overall, however, I cannot fathom a better outcome from a three-sentence craigslist ad.