It became official over the phone on Thursday: relapsing-remitting multiple sclerosis, the diagnosis read to me from a note my doctor had written as I spoke with her assistant about rescheduling my appointment. It was almost a relief to finally hear it, to get the label after months of knowing I was living with MS. During that time, I wanted to share the news with extended family, friends and colleagues, but I needed to wait until I heard those words before making my announcement on Facebook, a coming out of a kind.
And the love and support poured in. It was overwhelming in the best of ways. People sent notes about their loved ones’ or their own journeys with MS and similar conditions, and they were encouraging and inspirational. The effects this relapse have had on me physically have been hard to accept; I’m more fatigued than I’ve ever been, can’t walk more than a few feet without tremendous effort, and it is tiring in a way I would not have understood without experiencing it myself. I’m also still coming down from the steroid treatment, my face blown up, red and puffy, my emotions all over the place. I had to buy a cane (a cane!), and I keep looking at it and wanting to cry.
In The White Album, Joan Didion writes about receiving her MS diagnosis around the time of the Manson murders, saying, “I had, at this time, a sharp apprehension not of what it was like to be old but of what it was like to open the door to the stranger and find that the stranger did indeed have the knife.” And yes, it is just like that. Each issue–flare-ups, relapses, treatments–brings new strangers and new knives, unwelcome, threatening presences. I have to remember that my situation hasn’t changed; I’ve been living with MS for some time now, but my understanding of the situation is changing and has to keep changing. I’m fortunate to live in a time where there are treatment options that did not exist when Didion was diagnosed. Although I’m having a hard time presently, it should get somewhat better.
Right now, I can plan on doing one activity a day. Just one. Even that is hard. Yesterday, I picked up Abby, who is such a help around the house and with the dogs, and we visited my dearest friend and her girls for the evening. I held the snuggliest, most perfect two-month-old baby, laughed with her spirited three-year-old sister, and enjoyed my friend’s company, which has saved me more than once in the past few months. But I was exhausted by the time we got home, completely out of steam, barely able to get up the stairs to change for an early night. Patience remains elusive.
Today, my mom is coming over after church for dinner and games. Abby and I made a chocolate cake this morning to have for dessert, and she’s waiting impatiently for it to cool so we can make frosting, which she loves more than anything. We’ll sprinkle it with cheerful flakes of coconut, serve it with large mugs of tea. I may not get much else done today, but I did do that.
Tomorrow, the most I’ll probably be able to do is put dinner together, and I’ll have to accept that as the totality of my accomplishments in a day that might otherwise have held a nice, long walk, shopping, working around the house. I’ll try to be patient and rest. Abby keeps me from indulging my darkness too much, keeps my spirits up, and I’m so happy to have her staying for the weekend. Next week, I have a few days of work to attend to work on a group project, and although I worry about being able to make it through the work day–doing simple things like getting from my car to the building and back–I’m still going to try. I’ll find a way to make it work then.
But today there is an actual diagnosis. And family. And cake.