In 2003 my Multiple Sclerosis arrived and my autopilot disappeared. I was a full-time graduate student, commuting 50 miles each way to school. I had two young sons. I was a wife, trusted friend, reliable sister and daughter. I was actively involved in local civic organizations. I carved out “me time” and went to parties, got my hair done, planned vacations and lunches with my girlfriends. Belatedly, I realized I was not doing all of this alone. I am not referring to family and friends, though they do deserve some credit. Rather I am referring to my now oft-elusive autopilot, who I like to call “Tim”.
It is somewhat misleading to say Tim just disappeared. Rather I gradually noticed more frequent absences. He spent more and more of his time elsewhere and this did not work well for the Queen of multi-tasking.
It was Tim that allowed me to schedule doctor appointments, while cooking dinner, while giving my youngest a bath, while helping my oldest with his homework, while composing a memo outline for Public Management in my head. It was Tim that prevented me from telling the doctor’s receptionist to “be sure and wash your bottom”. He stopped me from shampooing the potatoes and boiling the calculator. Do those things sound ridiculous? Or do they sound like something you would do? Not everyone with MS will experience cognitive difficulties but I think that my missing autopilot falls under that category. It can be hard to determine what is caused directly by my MS and what is a result of MS related fatigue. Either way, multi-tasking ceased to be an option for me.
My first obvious symptom of MS was slurred speech. I knew that I wasn’t just overworked as the doctors initially said. I had a deep physical fatigue that caused me to nearly doze off driving home from school on a couple of frightening occasions. I collapsed on the couch at 7pm and slept deeply through Pokemon battles, and Lego wars. I had an unpleasant sensation that I described as “fire ants crawling under my skin”, which I later learned was parasthesia. No, I did not think I was overworked. I thought I was dying. At age 33 I did not know why, but surely my body was dying. Two months and two MRI’s later I learned that my body was confused; that I had Multiple Sclerosis.
Tim chose this time to desert me. Maybe he was worn out; I did expect a lot of him. Maybe he doubles as my mechanic and much of his time is now taken up trying to repair the periodic damage MS inflicts on my system. I do not know for sure, I just know that I cannot rely on him anymore. For instance, I now have to pay close attention because I may leave for a doctor appointment and end up at the grocery store. I can no longer carry on a conversation while trying to do something tricky, like parking…or turning left. At work and at home I frequently say, “Just let me finish this and then I can talk.”
Ten years later much has changed with my life and my MS. I have had losses, but I have gained much. The most surprising change is the discovery that Tim’s absences are a blessing. When my autopilot goes on vacation I am forced to live in the moment. Maybe that phrase is overused, but it means that when one of my kids gives me a hug, I am the one hugging them back. It is me that says, “I love you too!” and not an automatic response. I notice a lot of lovely sunsets while driving home. There were probably lovely sunsets before 2003 but I was too busy to notice.
These days I ‘do’ less, but I see, feel, taste, hear and sense much more. When I find myself frustrated about something that I cannot do, it helps to remind myself of this gift, to slow down and stay in the moment. MS brings plenty of unpleasant surprises; it is nice when we can find a gift in the mix. Has your MS brought you any unexpected gifts?