Three days ago I woke up feeling normal for the first time in four years. I cried tears of joy. Not knowing how long the feeling would last, I called my friend Roger to tell him the good news. He said, “What do you mean ‘normal’?” Well, normal is what healthy people experience—an effortless approach to necessary functions like breathing, walking, chewing food, etc. When I got Myasthenia Gravis four years ago, it was like I lived my whole life in color. Then one day when I was 24, for no apparent reason, the color left—it got darker. And darker. And soon I was living in sepia—a two-toned world. That is what I’ve known the past four years. I look like I’m 18 on the outside but feel 80 inside.
My “BMG” Life, Before Myasthenia Gravis
I should mention one exception to my BMG life, which stands for “Before Myasthenia Gravis.” I already had Polycystic Ovarian Syndrome (PCOS) for several years. So I knew pain but I only hurt a third of the time. (Perhaps other women with PCOS have a harder time). But still 1/3 is better than my AMG life (you probably guessed that stands for “After Myasthenia Gravis”?), which is pain 24/7.
What little things changed because of MG? Well putting my shoes on has been a pain. I hate bending down. So many things in life suddenly feel too high or too low. Lots of drawers and shelves suddenly felt too low to reach. I hate having to pick up something when it falls—gloves falling off the table at a restaurant when I’m out to dinner, for instance. And my bed (I had a great bed with drawers beneath my mattress and bookshelf) suddenly felt too high to climb in. Straining for something a few inches above my head hurts. I’m making everything in my room one level—so nothing is below my knees and nothing is too high either. I’m running out of space!
Will normal last? Will I reclaim space in my bedroom? On Tuesday, it lasted all morning and then wore off. I was tired in the afternoon per usual. On Wednesday and Thursday, there were moments (five to ten minutes) here and there when I was living in color.
A Thymectomy: Hope for a World in Color?
I hope to get better. Three years ago I had a thymectomy. Basically, they cut my neck open, pulled my thymus out (which is by my heart), and glued my neck back together. Recovery hurt like a mother. Surgery comes with no guarantee of helping. There is, however, a 40% chance all my MG symptoms can disappear (though I will probably still be on medicine). And there is an 80% chance of seeing a decrease—but not elimination—of symptoms. But there’s a catch: If it works, it can take up to six years to work. Six years! That’s longer than college, a presidential term, and some TV shows. I have endured primarily because of my faith. And friends and family. I have great nieces and nephews—my four-year old nephew Mikko has made himself my self-appointed toddler-physician. He comforts me whenever I’m in pain! I wish every chronically ill person had a Mikko. But I cannot rent him out.
Have you experienced moments of “normal” since getting sick? How did your illness(es) change your life?
–Your Cancer & Autoimmune Stylist, Jessica Gimeno