A nice/terrible thing about living with MS is that it’s often invisible. As mentioned in previous blogs, the occasional incontinence mishap can be a private hell, which is indeed a hell but is at least private. Fatigue is similar. A common complaint of people with MS is people saying, “But you look so good!” If you’re vain like me, you tend to focus on the “look so good!” bit. Still, when others focus on the outside, the inside feels diminished. Disregarded. And that can hurt.
In some ways, it was a relief when I began using a cane regularly. It’s a sign to the outside world that says, “Hey, this person is different.” The general public doesn’t always notice that sign, but, even when I’m not shown the courtesy I’d like, when something goes wrong–a dropped glass, a stumble–folks see the cane and think “well, sure.” I’ve moved with an M-acceSsory* for a long time, and I’ve often thought about how I am perceived. What I haven’t thought about is my only-ness.
I just finished my first three days in Georgetown’s Institute for Transformational Leadership’s Leadership Coaching certificate program. On the first day, I rode in on my red scooter with a big smile on my face. I led with my MS in my introduction, which is perhaps a topic for another blog–how much of my identity is tied up in my disease.** I graciously accepted help when classmates offered to carry my tea, my lunch plate. I asked to remain in my place and have others join me when we broke into groups. The first day was humming along beautifully. Then I fell.
You can’t ask for a nicer bunch of people to take care of you post-fall than participants in any program involving the word “transformational.” These people are as empathetic and caring as they come. I was helped into a chair. I was asked if someone could fill the mug I was holding. I laughed and said, “Yes, but sadly you cannot pee for me!” I agreed that scootering to the bathroom would be best. One of our co-directors scurried to figure out which restrooms were handicapped accessible. I cried only a little when reminded that I didn’t have to be as strong and positive as I project. The remainder of the course was filled with epiphanies, head scratching, deep conversations, laughter, doubt, and so many questions.
“Will stabilizing your chair be easier? When you sit? When you stand?”
“Can I get you anything when I go out?”
“Hey, can I get out anything when I go out?”
“Are you sore from yesterday?”
“Am I asking you if you need help too much?”
That last question really touched me, because it got at a part of my experience people don’t often consider. Being taken care of is a gift. Needing help all the damn time sucks. And in those wonderful moments when I don’t need help, someone asking if I do reminds me that my being okay and self-sufficient is not the norm. Please do not misunderstand me: I will never be upset with someone for asking if they can help me, because I know the impulse comes from kindness and concern. At the same time, one does tire of politely declining kind offers.
In class we’ve been instructed to “notice our noticing,” and what I’m noticing is how fucking lonely and frustrating it is to be an “only.” It’s a term that came up in a diversity discussion. In a story our instructor told, it was how the sole African-American in a group self-identified, and it hit me hard. Looking around, I thought, “Oh my god. That’s me! That’s me in almost every situation.” How bizarre to have lived a thing for so long without even thinking about it! I do not surround myself with MSfits (to borrow a term from my blogger soul mate, Dave), nor do I spend time with people with mobility issues. On one hand, I realize they’d be no use if I needed tea carried carefully across the room, but, on the other hand, they would understand the dual nature of offers of help.
I haven’t spoken much in the large class settings (something else I’m noticing), but I took this moment to speak up as we all grappled with how to acknowledge other-ness in a coaching setting. What I said was something to the effect of (but likely less eloquent than) “Speaking as a different kind of only, I will say that any time someone has asked about my situation from a position of kindness and curiosity, I have been happy to engage with them. It won’t be a way in for everyone, but it is a starting place.”
I suppose if there’s a takeaway from this blog it might be that asking “How can I be most helpful?” once and trusting people to speak up about emergent needs is likely the best approach. It is for me, at least. Also, if you know people with MS*** who might like to be my friend, please send them my way. We onlys (onlies?) have to stick together.
*I know. Stop trying to make fetch happen.
**We’ll table that for now since my main reason for starting there this time was explaining why I was disregarding the instruction to stand.
***Or, better yet, if you are a person with MS who might like to be my friend, please reach out!