Tuesday, March 29, 2011
Saturday, March 19, 2011
Monday, March 14, 2011
On a warm Saturday evening, we all huddled around my grandparents’ wedding photo and raised a toast. Birger had a high forehead and eyes so light that even in a black-and-white photo you can tell they were cornflower blue. My grandmother, Vendela, had wavy hair, full lips and a watchful look. They married and had five children in rapid succession. But in 1945 she died of meningitis, at age 33, leaving my grandfather with the children, ages 2, 4, 7, 9 and 11.
After the death of his wife, Birger tried to get help. In the newspapers of Gothenburg, he advertised for a full-time nanny, and a series of hopeful women took trains up to the farm. One after the other was interviewed and deemed acceptable by Birger, but then after taking the job, quickly scared off by the children. It was “The Sound of Music” without the money or Julie Andrews. To frustrate the candidates, the siblings played loud music and invited their friends over for dance parties. They shoveled snow in the fireplace, making it impossible to light a fire.
“Enough,” Birger said, after the third woman left. There would be no nanny. They had their father to themselves, and Birger had the five children to himself. He never remarried.
The local government decided to intervene. One day two men in suits came to the farm accompanied by a nurse (municipalities in Sweden had official nurses responsible for children). My mother and her siblings watched from an adjacent room through a crack in the door. Birger sat down at the kitchen table with this nurse and the two men. They informed Birger that the oldest sister would be allowed to stay at home, but that the rest of the children should be split up and taken care of by other families. Birger said nothing, but his hands clenched into fists. Really, the nurse insisted, it’s in everyone’s best interest. There was a long pause, during which a fury gathered in Birger’s blue eyes. He raised his fist and brought it down so hard on the table that the floor shook. “Out!” he commanded. “All of you, out of my house!”
Those people never returned, but others in the village helped. The kids knew which farmer’s house to go to when they wanted cookies; whom to go to when they wanted jam. Each morning, Ulla-Britt, the oldest sister, made sure their hair was brushed and their clothes were clean. Each evening, a local schoolteacher came over and gave them baths.
The kids picked berries in the fields, swam in the lake and skied to school. They look back on their childhood as idyllic, despite the many hardships. When the youngest, Marianne, was 2, her leg was run over by a tractor, and thereafter, she wore a brace. My mother’s older brother was born with polio and walked with a limp. Ulla-Britt died of cancer on her first wedding anniversary. She was 29.
After that, most of the siblings scattered, but Marianne stayed on the farm with her husband. My uncle Rolf died two years ago, leaving only the three youngest Mellegard sisters. As if clinging to what they have left, the three sisters get together often, sometimes sleeping in the same room, the way they did as girls, and talk into the morning.
After dinner on the last night of the reunion, we sat outside by the lake, drinking coffee and eating strawberries with cream. It was 9 p.m. and bright out, the midsummer sun still a few hours from fading. As I sat there watching my children play in the same place Birger’s children had played, I wished I knew more about his wife, my grandmother, whom I was named after and whose wedding ring I wear (it was given to me because it’s engraved with my name). And I wondered what Birger would make of this gathering, if he would consider his stubbornness justified, his sacrifices after her death worthwhile. As if to answer these questions, my mother looked at her sisters, curled her hand into a fist and banged it on the table triumphantly. “What a success!” she said.
Friday, March 11, 2011
Tuesday, March 8, 2011
I wasn't going to say anything official until after next Wednesday, but this whole thing has been ruling my brain for some time now and it appears that I cannot stop from writing about it. So there we are. Plus, my whole hometown in Florida knows about it, apparently, so I should just maybe start telling my own friends about it. (I include any readers as my friends. Awwww. *sigh* A bit sad, that.) I've been avoiding actually stating it also because on the off chance the neurologist says I don't specifically have MS next Wednesday, then I'll be the asshole who got everyone freaked out about nothing. Only, there's no way it's nothing. So, even if it's not MS, it would have to be some other really not good neurological disorder. Whew. OK.
I can't stand still. Literally. I weave when I try to stand still. Impaired balance, it seems. While my dizziness has abated and is no longer my primary symptom, I still have extreme fatigue to deal with. That's the most debilitating.
All that above paragraph? Hate it. I sound (and again, sorry) like a pussy. I do. That's how much I hate it, is that I'm willing to use the word pussy in a public fashion. Twice, it seems. It's just fatigue. "Snap out of it!" But, can't.
That's one good thing about getting a diagnosis of MS. My symptoms are no longer possibly just in my head. They are literally in my head. Ha. Meaning I have lesions. Haha! Not funny. Sorry. Oh, the other good thing about an MS diagnosis is that I have to no longer worry about my many social awkwardnesses. I have a disease! Of the brain! That's the reason I'm weird. That's the reason I have no memory of anyone's name ever. That's the reason. Yea.
I am a whole mess of mess right now. I'm not going to lie, that Mommy's Story pdf freaked me out. Despite the bleak picture painted by that book, I'm mostly in denial about what my future is going to be like. I'm pretty good at denial. This disease is weird too, which contributes to the denial. There really is no way to predict what's going to happen. Apparently, things can be mostly halted with medicine. Which is good. But no one ever says I'll be cured. That this will go away. This is going to be managed. Mother the fuck. (sorry)
Monday, March 7, 2011
The purpose of this survey was to better understand the extent and impact of a particularly challenging neurological condition known to occur among people living with MS: pseudobulbar affect (PBA).
PBA is a condition that occurs in some people with certain neurological conditions, including MS, ALS (Lou Gehrig's disease), stroke, traumatic brain injury, Alzheimer's disease and others. It is characterized by exaggerated and inappropriate laughter and/or crying. During these emotional outbursts, the magnitude of the response is typically too extreme for the situation, and/or it may be inappropriate for the setting - such as laughing at a funeral or crying at a funny movie. These episodes can occur frequently, suddenly, and uncontrollably. Because of the crying episodes, PBA is often mistaken for depression and as a result, PBA is under-recognized. Unpredictable PBA episodes can cause embarrassment and distress leading to a significant impact on a person's employment, family relationships, social interactions, and overall quality of life.