Graceful
Today is a big deal. At least it is for me.
(And maybe it is for you, too. If I’m sharing this on your birthday or something, a thousand pardons.)
Today is an anniversary of sorts. Today marks one year since I learned that I have multiple sclerosis.
. . .
For anyone wondering “what even IS multiple sclerosis?” I see you. Multiple sclerosis (MS) is a disease in which the immune system eats away at the protective covering of the nerves (called the myelin sheath), resulting in lesions. The nerve damage from these lesions disrupts communication between the brain and the body.
How did I figure it out? I had an “episode.” The condensed version is this: what started as numbness in my pinky toes quickly spread from the littlest toes to all the toes, to my feet, my legs, my pelvis. I had a complete lack of sensation from the waist down. I went to my doctor and was immediately sent to the ER. They ran some tests, and I was admitted into the hospital.
I had an MRI of my brain and 3 MRIs of my spine… spending upwards of 3 consecutive hours in that barely-human-sized tube. I had a lumbar puncture, several good cries, and a lot of vanilla pudding. 3 days later I went home.
I have about 20 lesions -- 14 on my brain and about 6 on my spine.
So what does that mean for me now? After a high dose of steroids and about 3 months of recovery, I’m feeling better. I have only had 2 episodes since last June (including the one that prompted my diagnosis). I take medication to prevent future lesions, and I go for regular MRIs to make sure that medication is effective. I have periodic flare-ups where my hands and feet tingle or “fall asleep.” I am exhausted all the time.
June 8, 2018
. . .
I haven’t told many people. This is for a few reasons.
I don’t know much about MS, and I’m not sure what the disease’s path will be. It’s different for everyone. Will it affect my ability to walk, my motor skills, my strength, my muscular control, my vocal cords? I don’t know. And it feels frustrating (and unproductive) to share something I know so little about.
There is no right thing to say, meaning there is no correct response to “I have MS.” It still feels very raw. I feel fragile. My diagnosis is really challenging for me to discuss. There is very little that makes me feel better, and a lot that makes me feel worse. And when people don’t know what to say, they say some pretty upsetting shit.
I was worried that someone might say something truly ugly about my diagnosis, even if it was just behind my back. I was worried someone would say I deserved it. Or it served me right. Or I needed to be taken down a peg. This was my biggest fear… which I’m sure says more about me than it says about other people.
. . .
Despite these fears, I have shared my news with a handful of friends and family. And while lots of people say the wrong thing (because let us remember there is no “right thing”), most people say something to the effect of “you’re handling this with so much grace.”
GOOD GRAVY. I have never felt LESS GRACEFUL in my life.
I feel sad. I cry more often and more easily. I want everything to go back to “normal,” whatever that means. My heart hurts… for myself, for my family, for my boyfriend. I feel grief. I feel “homesick”… like I’m so far away from the way things were before, I want to get back to that place. I’m disappointed. I understand that MS isn’t a death sentence, but the thought of my brain and body not communicating terrifies me. I feel like I took a healthy future for granted. I feel foolish.
I feel angry. I (already) have a deep fear-of-missing-out, and I’ve already missed so much. I have let people down. I have hurt feelings. I have been bitter. I have felt misunderstood. I’m still learning about how and when to push myself… but I haven’t cracked it. I seem to have 2 speeds:
I stretch myself, running on fumes just to be physically present and mentally elsewhere. Sometimes I martyr myself because of it… which is a real treat for everyone!
orI’m all in, exerting all of my energy in one short burst. Laughing, dancing, jumping, singing… only to become so physically fatigued I can barely move, sometimes this lasts for days. (Last October I even landed myself back in the hospital after sharing my gifts on the dance floor.)
October 25, 2018
I don’t know how to talk about it, but I also can’t handle the NOT-talking-about-it. I’ve ignored friends who have reached out because I don’t feel like pretending I’m fine and being “on.” I’ve flaked on dinner invitations. I’ve hidden from former teachers in grocery stores. I’ve practically run away from old boyfriends I’ve seen on the street. All because I don’t want to be asked “how are you?” Even as I write this, I can think of people I’ve spent time with in the last year. We talked about everything except my MS. They asked “how are you?” and “what’s new?” I said “really good!” and “no life updates!”
I feel ungraceful.
. . .
But I should (and will) give myself some credit. For as many things as I missed in the last year, I also made a lot of things happen. Rallying for my sister’s wedding is something I am truly proud of... I threw her a bridal shower and a bachelorette party. I was able to stand next to her. I danced with her. And I hate to toot my own horn, but I gave an excellent speech. ::toot toot::
And... there may have been a few teeny tiny windows of grace.
Once I left the hospital, I had to move in with my parents for a few weeks because I couldn’t climb the stairs in my apartment building. I also couldn’t shower alone or standing up. Believe me when I tell you: this changed me.
For many years I have felt completely out of sync with my body. I have felt that my body was NOT good enough, like everything about it was wrong. But there was something about that first (seated) shower at my parents’ house. I remember looking down at myself, at my numb legs, and thinking “you’re so small, and you’re doing your best. It’ll be okay.” It was like someone had flipped a switch in my brain. I couldn’t believe how tiny my body was, how hard it was working, how helpless my legs seemed. They felt entirely separate from me, but I loved them so much.
Maybe it was due to the unique humility that comes from showering seated (and with assistance). Or perhaps it was because I realized what my body had been through. 20 lesions don’t appear overnight. They accumulate over years. This whole time my body was attacking itself from the inside, and I didn’t even know it.
Don’t misunderstand me, I didn’t completely recondition myself through bad news and some seated showers. (If only!) It’s a process. I run my fingernails over my legs multiple times a day to test the sensation, just to know they’re there. They’re with me. I can feel them. I love them. It’s a big deal.
. . .
So why am I sharing all of this even though I don’t actually want to talk about it? I guess it’s because I want this to be something that you know about me. I feel like it’s a piece of the puzzle that you need, that I want you to have.
When I initially returned to work, I would frequently leave early or come in late so that my body could rest and recover. People said things to me like, “wow… leaving early again? Must be nice to be you.”
And while it didn’t feel nice to be me (and I think that’s an extremely obtuse thing to say to someone who was mysteriously out sick for 3 weeks), that was exactly what I presented. I smiled, I laughed easily. It was (and usually is) completely sincere, but it wasn’t (and rarely is) the whole picture. I projected that I was not only fine, but GREAT. I do it all the time. It’s like armor.
Please understand this is not an invitation to discuss my diagnosis, I just couldn’t carry the secret anymore. It’s a weight lifted, because armor is heavy. I have multiple sclerosis. This is a thing you know about me.
I’m trying to be graceful.
. . .
ignis aurum probat, miseria fortes homines
