Apology Excepted

“I need to apologize to you,” said my mom. “When you told me the court’s decision I should have been happier for you…”

A parent needs time to come to terms with seeing their child be stamped “DISABLED” by the government – as joyous an occasion as it was to finally be awarded SSDI, I know exist perpetual layers that encompass almost every emotion, and are different for everybody involved.

Kathy, mom's first younger sister.

Kathy, mom’s first younger sister and my namesake

I was taken aback by mom’s apology. And then a warm mudslide of love and devotion seemed to encompass me, bringing with it the urge to be holding her tight; my mother is a woman who has been through trial after trial with her entire family since she, herself, was young. Some have family fault, others the normal pitfalls of human existence. As the oldest of five sisters, Debby was raised — whether or not inadvertently — to learn how to hold the title of family matriarch. As a young girl, Debby lost her younger sister Kathy (for whom I am named) to Leukemia. It was just her and the youngest, Linda, for many years.

After marrying young, my mother and father found it the natural order of things to open their home for family — as a kid I remember all of my aunts, at one time or another, crashing in our living room. I was too small to remember my Aunt Linda’s wedding, and the person I grew to remember couldn’t have been the same Linda who starred in escapades of young, creative vigor with a twinge of wild side. I knew her as a grownup in a wheelchair who didn’t talk a lot.

Aunt Linda at her high school graduation

Aunt Linda’s high school graduation

I learned the words “Multiple Sclerosis” by the time I was five, despite my only frame of reference being watching peripherally as her health continued to slide downhill. My mom, grandmother and another sister were all RNs, so it was easy for them to slight-of-hand -away my notice from any actual adult or medical issues.

I remember not knowing why she’d so like to hear my voice reading stories on a tape recorder. I do now. When I was eleven Aunt Linda died trying to escape a house fire, leaving behind a husband, new daughter, mother, one older and two younger siblings. I would give anything to have known her — friends with James Dickey and travels to Italy for singing at Spoleto. From what I have learned of Aunt Linda’s life, I know it could only be possible to love her more if I could physically embrace her.

It had to have been a nightmare to learn that Debby’s little girl was going to suffer through a similar life. There really hasn’t been a better time to have MS than now — treatments are available, and research has branched into many different engaging factors (neurology, diet). I did not feel hopeless when the MRI came back with evidence of a demyelinating disease — in fact, it explained more questions than it asked. Yes, MS can be terrible and on plenty of occasions it has been terrible to me. Witnessing MS progress in a loved one is burdensome; I cannot imagine how much more exponentially one is affected when it is their own child.

[Circa 2004]

[Circa 2004, Lowcountry Fair]

Aunt Linda was 35 when she passed; I turn 34 next year and cannot even begin to comprehend having left the stage before curtain call. It is for Aunt Linda and for my mom that I still rail against MS symptoms for control of whatever independence is left me — being actively as well as I can be is an insurmountable debt of love I am glad to repay.

Nope, mom — here no apology is needed.

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