Tuesday, January 20, 2015

Day +7 A Slow Jam

Yesterday would have been my mom's birthday. She died 16 months ago and in some ways it feels like 16 years ago, so much has happened since.

Sometimes people ask if I am mad at her since she insisted more than anyone else that I did not have MS. That's not true, by the way. Nobody would be so rude as to ask me if I am mad at her, but I ask myself that a lot and pretend somebody else brought it up. Because the truth is, I am furious with her. For years I told her I had symptoms. Tingling. A tight band around my torso. My foot stumbled sometimes and she said no, that's not even what foot drop looks like. She was a nurse, a really great, well-respected nurse, plus her husband had MS, so she should know, right? To her credit, we went to the doctor. Doctors. They also said I didn't have MS, so more and more I relied on my mom to allay my fear. I don't have it, right mom? Except late nights I would actually call her mommy, all guttural and please make it go away, curled up on the couch while everyone else slept. Of course not, she would say, silly, she would say. You have to stop this. Sometimes she would get exasperated with me and say my name Susannah! in the way that only she said it, a hint of southern accent and just her.

My mom was always right. Part actually always right, extremely intelligent and perceptive, part just had to be right, no matter what. Once I told her that she just didn't want me to have MS because I was her daughter and she loved me, so of course she didn't think I did, and she got so mad at me. If I thought for one second that you had MS I would have them do every test there was on you! The same women who called the president of my college to get me the classes that I wanted, so I believed her.

I believed her.

8 months after she died I was finally diagnosed, and I can't help but wonder what her reaction would have been. Would she have admitted being wrong? Would she have apologized? Would she have said my name any differently? Of course, of course and no, although all three would have been a first. Because you didn't know my mom. In some ways, I don't know my mom. She was so busy being magical that at times she did not seem real. She was the best, most beautiful, smartest, funniest, wackiest, and yet she would go silent, almost reverent, whenever she traced her fingers down the inside of my arm. What would she have done when I was diagnosed? Would she be here with me in Tel Aviv? Would she help me pick apart the counts of lymphocytes, granulocytes and neutrophils? Or would she just stroke the inside of my arm?

I will never know and I am mad at her for that. For a lot. Maybe it's not fair, but come on, none of this is fair. It's just a fucked up story in a world of fucked up stories, but it's mine and I will probably spend the rest of my life trying to make sense of it. Or trying to ignore it. Either way.
I know I've shown this photo before, but I only have so many.


Mindy said...

Yes, she would be there with you. And then she would delight in becoming right... after HSCT you will no longer have MS. You know she is there with you now, just around that corner, smiling.

Mr. X said...

Dearest Petunia Face,

May you find some peace and comfort in the following:


Perhaps something will resonate with you. If not now, maybe later. You know, the whole "When the student is ready..." thing. (Which I've seen many times in my own life.)

I realize that Wayne Dyer is to Spirituality what Dr. Oz is to Medicine. But, Wayne was my first 'Spiritual' teacher and his work helped me to start questioning the ways in which I thought about things. In many cases, my old, habituated ways of thinking were not serving me.


Thank you for linking to those older blog posts, as I'd not read them before. I also got to read a beautiful response from your dear Mother, on behalf of Allen. Not only did you inherit your Mother's beauty, but her talent for writing, too.

So many of the things I read about you remind me of myself. Not just the dimples above my butt, mind you, but the anxiety and the tendency toward hypochondria. The latter, as it turned-out, was warranted for you.

I'm hopeful that my current anxiety and hypochondria are just the result of too much time in my own head, rather than something actually being wrong. I've not had *everything* bled, probed, scanned, and measured, just yet, but it's close. Oddly, while that should be reassuring, it's not.

Side note: I always giggle when I write or hear "It's not." It sounds like "It's snot."

It's been over 25 years since my Mom passed and seven additional years since my Dad passed. In my experience, things have gotten easier with time. What it really was, I think, was my getting older and understanding the power of acceptance.

As Jung purportedly wrote: "What resists, persists." Again, this has certainly been true for me.

Vive la résistance?

Let's hope not.

Your beauty, strength, compassion, intellect, and humor are daily tributes to your Mother. In other words, you're a reflection of her. Think about that, the next time you look into the mirror.

Thank you for sharing your journey and reminding me that we all have far more similarities than we do differences.

Mr. X

Anonymous said...

Susannah, I may not know much, but I do know that your sweet mom would have been right there beside you, holding your hand and telling you how much she loved you and belly laughing when you had to waddle to pee. Great moms are like that, right?
I also think that Mr. X is wise and awesome!
You both make me cry In a good way and inspire me! Keep fighting and I will keep praying for all of you!

Petunia Face said...

I second the statement that Mr. X is wise and awesome! As are all of you, readers and commenters alike, my support system. You all make such a different to me. Thank you.

Anonymous said...

Moms always try their best - yours did, you do and Zoey will too. In her mind, your mother didn't want you to have MS and she might have been in denial, but who can fault her? Especially her being a nurse, she saw sickness day in and day out, she wanted to come home to a wholesome, healthy family.

Just think if she had lived long enough to find out about your MS - she'd be feeling guilty and full of regrets, awful feelings no one should have. She's with you in spirit and you should take comfort in that. Would you have been as brave if she was still around?