Still Miles to Go

Today, I lost it. I’m not proud to admit it. In fact, I’m embarrassed. But I strive to be open and honest, so here’s the truth: I completely lost it and blew up at my amazingly wonderful husband.

Some background: Three months ago, Keith and I packed up our amazing 1-bedroom apartment that overlooked Fenway and set off for our newest adventure, which happened to be moving to a quaint New England town in Northern Massachusetts. We have been very lucky here, living incredibly close to some friends who closer to family than friends. Unfortunately, I degenerated severely at the end of June through the end of July. I had an increase in seizures, dystonia, and sleep requirements and a decrease in muscle tone, weight, and mobility. Luckily, I have managed to rebound and am only slightly below my previous baseline. Also fortunately, our “family” – including my biological family (my mom!) – was there to help us through everything from the medical to the move and unpacking. We are incredibly blessed to have such an amazing family – biological and acquired.

Unfortunately, we weren’t able to get everything unpacked and – for the last two months – we’ve lived with about 20 boxes (mostly books) and 12 tins (all holiday decorations) that still need to be unpacked/stored. Additionally, we have 50 (possibly more) empty, broken-down boxes that have inhabited our dining area since the end of July. For those who don’t know me, I seek to have a clean and organized living space. Clutter makes me nervous as does disorganization. Since my marriage over 2 years ago, I’ve become far more relaxed about cleanliness and organization in compromise with my not-so-neat husband. He will confirm that I make far more allowances that I previously have. Dishes may be left in the sink while we eat and laundry can pile up for a week. Additionally, the bed does not always have to be made and vacuuming can be put off for tomorrow.

And you must know: Keith has a ton on his plate. He works his ass off – attending classes and seminars, teaching calculus, and researching for his dissertation – as PhD student in mathematics at Brandeis University. Because I no longer have a driver’s license, he willingly drives me to medical appointments, work, and various other engagements. He cares for me when I’m ill with deep sincerity, and never resentment. He volunteers his time for causes which are no longer just close to my heart, but also to his own. In fact, he has single-handedly gathered over 150 signatures in just 2 months for legislation that benefits both the UMDF and the IDF. He fights for a cure not only for me, but for others who may not have a voice. He is undoubtedly my greatest hero, in so many ways.

But he cannot do it all. I am extremely prudent about refraining from nagging, but I do still ask quite a bit of him. I do all that I can: laundry, (some) dishes, organizing. I also pay bills, keep our calendar up-to-date, and take care of the logistics of running an (admittedly small) household. I work 10-20 hours each week tutoring kids with special needs and 5-10 hours on neuroscience research through my appointment at MIT. But, unfortunately, I can’t lift things, I can’t vacuum, I fatigue easily, and I can’t even stand for an extended period, i.e. longer than 60 seconds. This limits which chores I’m able to do. It also means that many of the remaining chores fall to him. Because of this, I aspire to calmly remind him of things we need to do, but rarely more than once a day.

Unfortunately, this means chores frequently don’t get accomplished. Today, the clutter of the apartment got to me. I began with laundry and dishes, but there was a huge list of things I couldn’t do myself. I decided to attempt working on one item on the list: framing my Ansel Adams prints. The frames, matting, and prints have been sitting in the alcove for nearly 2 months. I routinely trip over them to get to the laundry; I have bruises and welts as evidence. I began by cutting down the matting to fit. When I was nearly done, I lost my balance and put too much pressure on the glass. My hand went right through the glass, shattering it all over the living room and slicing my wrist. Brilliant. This is when you’re supposed to count to 10, right?

Instead, I lost it. And Keith became my scapegoat. It was all his fault this hadn’t been done earlier, right? He had two months to get it done! After about twenty minutes of communicating my fury via phone, I was calm. And incredibly embarrassed. Yes, this was on his list of things to get done, but have you seen his list?!? It’s longer than Santa’s “naughty list.” And the list gets thrown to the side every time I have a medical crisis.

But we have to do something. The apartment still looks like we just moved in. We came to the conclusion that we’d have to walk the thin line between politely reminding and nagging.

One of the things I love most about Keith is how easy it is to converse, meditate, and compromise with him. We work well together, through the sun and the storm. There’s no leader and no follower; we walk together on this journey. And there’s no one else I’d rather have by my side, holding my hand.