In·(Mot)Her·Words |Part 7|

I’ve been going through a bit of a rough patch, despite the very positive start I’ve had in 2013.  I’ve followed through with almost every promise I’ve made so far, something that feels really good to me.  I’ve already tried to love again.  I’ve realized that I am so far from having what I want in life.  I keep reaching, and stretching, and not quite making it.  When I wake up with tears in my eyes, when even my therapist and friends can’t understand how I feel, I remember that I have been missing a fundamental relationship for all of my adult life.

Sometimes a girl wants her mom.  Sometimes all a girl has is a pile of letters.  This, I find, is better than nothing.

I naively used to believe that if I cried enough tears the pain from the loss of my mother would magically be gone.  I don’t believe this anymore.  I recognize that the wounds will get ripped open each and every time I experience a loss.  The scar tissue thickens, and thins.  I forget that it’s there until a slightly raised portion gets caught on something, tears apart and starts the process all over again.  I acutely experience the same insecurities I felt as seventeen year old, realizing that I would be going at this life without the physical manifestation of a very important person.

I used to think that someday I’d be whole again.  That if I did enough soul searching things would heal completely.  I don’t believe this anymore.  I will never be whole.  After 11 years I acknowledge that there will always be an emptiness.  That’s what makes me, me.  I accept that I feel more deeply because of this.  That I have a part of me that I want to fill up with something else, even though that is impossible.  I attach a little bit faster, love a lot harder, and crash a bit more spectacularly.  There is no one who will ever be able to replace my mother, and there is a big part of my heart that still wants and needs her – that wants to be loved in a way that I imagine (cause I can’t ever know for sure) only a person who has raised you can.

My mother suffered from a rare genetic condition called Machado Joseph’s Disease, one that is passed on from parent to child.  It’s symptoms include a loss of muscle control, double vision, increased frequency of urination, muscle fatigue and pain, trouble swallowing – as far as I can tell it’s kind of like turning back into a baby with a fully aware mind.  She suffered greatly as she tried to both battle the condition, and reclaim her body and life after becoming wheelchair bound.  Her fate was unavoidable.

MJD is relentless.  It strikes and progresses until it’s job is done.  If only I had such focus.  No cure has been found and the only action it accepts is submission.  Major symptoms started to present themselves at my birth.  She was unable to push me out of her body.  I would be dead if not for medical intervention.  When I was six months old her hands stopped working and she scratched me in the face.   Another time, she fell while carrying me in her arms.  She was 32 years young when all of this began.  She died a few months after I turned 18 and just three days before I headed off to college.  I spent most of college numb, not surprisingly.  I still managed to get decent grades, soooooo…no harm?

Yes, harm.

I can say with great sincerity that the experience of watching a parent die before feeling the excitement and boundless pleasure of youth had it’s effect.  I recently admitted to myself that I think I want children, which is a huge step.  For most of my life I equated parenthood (and my future) with death, demise, decay, degeneration, and a host of other negative d words.  I saw my fate as intimately connected to hers.

In February of 2008 I decided to get myself tested for MJD because all the cool kids (my siblings) were doing it.  I was 25.  I lived my whole life with complete assurance that I had the disease.  I had planned a career for myself based around MJD.  I was looking and finding signs of the illness by the age of 22, so it was only a matter of time.  I knew MJD better than I knew myself, and was prepared for it.  This is what I had spent my whole life doing, preparing to be sick.

I was in Illinois, spending time with the man I was dating at the time when I got the phone call.  The nurse on the other end of the line excitedly confirmed that I did not have MJD.  My life from that moment on crumbled into a million, tiny pieces.   Everything I’d been preparing, while thinking I had MJD was, in a moment irrelevant.  I had been planning my life around an illusion.

There were a lot of things that I was afraid to do because I thought I’d be sick.  I never sang or danced because these were things my mother loved, and to watch her loose her abilities was heartbreaking.  I just abstained, and watched everybody have a good time.  It was almost as satisfying as the real thing.  At this point there are a lot of things I have done, but there are still a few youthful indulgences I want to fulfill.  Having a sick parent meant being responsible for myself at an early age.  There was no easing into adulthood.  I could be seen doing adult-like things at an early age.  I still find it quite difficult to loosen up and get silly, I’m a bit too serious.  I still have never made out hard core in a movie theater, had embarrassing hickeys, bought a Christmas tree, or had a fist fight in the streets!  These are all things I want to do before I die.

I’m only now finding my footing, returning to a path that will hopefully give me some stability and let some joy into my life.  Being and artist and being stable seem incongruous, but this feels like the only way I can live my life: sharing my experiences, celebrating my life, loves, failures, successes, desires, and problems.

Time for a musical interlude.

The title of that song is Freedom/Motherless Child.  There is a freedom in being a motherless child, but at a pretty high emotional premium from what I can tell.  I sometimes look for other women who have lost their mothers around the same age as me.  We are hard to keep up with because we like to run around, from place to place, trying to fill our hearts with something that can never actually be re.  I dedicate all 7 of these posts, and the many more to come, to all the women who’ve lost their mothers during the sensitive teenage years.  I know that it has made me both fiercely passionate, and in some ways developmentally stunted/emotionally sensitive.  It’s hard for me to know what changed, but something did.

A few weekends ago, the same weekend that my father went in for radiation therapy on his prostate, my aunt found a box of letters from my mother to her mother, spanning the years from 1969 (my mother’s first year in college), to 1973 (the year of my parents’ marriage), and beyond.  It’s the best gift I’ve been given, but I was hesitant to dive in.  What if I found some horrible secret?  I threw the bag in the corner and felt generally uninspired by the gift until last night when I woke up with that empty feeling.  I knew what I needed, (Mot)Her Words.

I spent a few hours trying to piece together her experiences, and perhaps light my own path, through page after page of of nearly illegible, missives.  I will start with a letter written in the fall of 1969, a few months after my mother entered college at the University of California: Santa Cruz.  My parents met there.

It is notable to mention that the last person I dated went there also.  It is not altogether unusual to meet people who went to UC Santa Cruz here in San Francisco, in fact, many of my friends studied there.  This is the first time I’ve lived and dated in my home city, so something about it felt special.  Like maybe I could reconnect with a lost part of my life through him.  With me, everything feels special.  I hope I never lose this quality.  This last guy also studied the same things and had the same general interests as my father (psychology and music).  This doesn’t mean I found him to be like my father, just that those were some of the things that made me feel connected to him, that made me keep up with it despite the doubts that I had.  I think sometimes my brain tries to find my past and my future by being attracted to people that seem familiar.  I want to connect deeply, so I find people who relate to important parts of me.  I’m actively looking for something different now.  I’m looking to make more of an authentic connection, not one based on things that I think feel familiar.  Basically what I’m saying is I won’t be dating any more musicians.

I posted this Facebook status a few days ago in a desperate attempt to exorcize them from my romance sector.

Can I break a curse by making an offering to the musical gods on Facebook?

Throughout my romantic life I’ve seriously dated what I consider an inordinate number of aspiring/actively practicing musicians. There was the lead singer of the metal band in Spain, the sound designer and composer in Utah, and the drummer/dj in Virginia.

I’ve casually dated even more of them. The guy who was the backup vocalist for Santana in the 90′s, the bass and drum dj, the traveling songster who came and left with little more than a broken guitar, and the voice behind the shape-shifting, orchestral rock band.

I can only think that I’m attracted to these people because I was raised by two aspiring musicians, and for reasons still unclear to me, deny myself the right to openly and actively explore what songs I could be singing. The creative forces are after me, and if I deny it within myself they force me to try and date and love it, which is a punishment worse than the humiliation I experience at Karaoke.

Music runs deep on both sides of my family. My great grandfather, Frank Fairfax, led a big band in Philly in the 1930′s. The same big band that gave Dizzy Gillespy his big break. Dizzy was a figure in our family, and I met him a few times as a child. My father, brothers, and cousins have spent countless hours with their respective instruments and inspirations.

I have a cousin in LA, who I’ll admit to not knowing very well, who spent the last ten years playing keys for a band called The Mars Volta. I think people like this band. I remember visiting his house as a teenager.

Music, music, music, everywhere.

And so my offering is this:

Most holy music gods,

I will actively explore the music within me, support the musicians around me, and will wholeheartedly appreciate the gift that music is. I will even make a small shrine to music in my room, and pray that all the musicians in the world record often, tour comfortably, and remain addiction free.

I can get my guitar back and start playing again (yes, I’ve already started this process). I will even start paying for music instead of downloading if that’s what you want!

Please, don’t let me choose anymore musicians. There are too many artists in my family anyway. Send me a doctor, or a scientist, or a venture capitalist, maybe even a contractor, or a chef! I like food!

Hoping this reaches you soon.

Your humble servant,

Leslie

I am backing these words up with focused action.  Concrete works, backed by a faith that I will be able to find someone to love me the way I deserve to be loved.  I’m being honest and I have evidence.

Exhibit A:

Last weekend I got trashed with a good friend while trying to forget that my heart was hurting after yet another unwise romantic decision that resulted in me getting rejected.  Not only was I super annoyed by the end of the night, but my Saturday basically got absorbed by being ridiculously hungover.  A man handed me his business card as we left the final bar at the end of the night.  I stuffed it in my pocket, barely noticing what it said.  I awoke the next morning and pulled the card out, squinting in horror after realizing that the man that I exchanged information with was a musician.  A jazz pianist.  FML.

He texted a few days later and we exchanged these words:

Jazzy Fingers: Hi Leslie.

Me: (I hadn’t put his number in my phone, cause who actually expects guys met in bars to call?)  Is this the piano player?

Jazzy Fingers:  Yup, that’s me.  How are you doing?

Me:  I’d be better if you weren’t a musician.  I attract a lot of them.  Trying to break this habit.

JF:  Ahhhh, gimme a break.  Not all musicians are the same.

Me:  That’s what all musicians say.  But seriously, I made a promise to myself to not get involved with any more music oriented folks.  Love and respect what you do, but looking for something different at this phase of my life.

JF:  So what kind of guy are you now looking for if I might ask?

Me:  Warmth, empathy, emotional awareness, depth, commitment, humor.

JF:  Are you sitting around at home texting like I am?

Me:  (the next morning)  Sorry, I fell asleep.

Hahahahaha!  He never texted back, which was the goal.  Apparently falling asleep while texting and telling a guy about it is seduction kryptonite.  Look Ma!  Ima changing my ways!

Exhibit B:

I spent a most selfless Sunday trying to connect a musician friend up with people who are totally into his band.  I don’t know if my actions will bear fruit, but I sometimes think that it’s the intention that is important.  My goal is to redirect this energy.  I’m proud of myself for trying.

Without further delay, here is the seventh installation in a series I like to call In (Mot)her Words.  My mom was probably about 18 at the time of this letter.  She wrote it to her mother.

Sunday, October 19th, 1969

Dear Mom,

This is the first weekend that I haven’t seen all of you.  Monica Ferris, that girl from Willow Glen [where my mom grew up], has gone home every weekend.  Glen, has gone home every weekend.  I’m beginning to like it here because all of the used-to-be unfamiliar faces are becoming familiar.  The other day I bought another text – Basic Psych.  Oh yes.  I’m not taking Biology, thank goodness.  I changed to Psychology instead.  The lectures are 10 times more interesting.  Prof. Marlowe, the instructor is a dirty old man and very funny.  I think he is a frustrated comedian.

I would like to thank you for being such a good mother  They are hard to come by these days, you know.  I also want to apologize for all of the hard times I might have given you, criticizing etc., but you must understand that we adolescents do have it kind of rough.  Am I still an adolescent?  Golly, I guess not! Oh well, you have to grow up sometime.

We don’t get breakfast on Sundays and I’m starving!

Shirley’s mom wrote her a letter telling her that she could come home the weekend of Halloween.  Did you know that Halloween falls on a Friday this year?  That’s good for all the little school kids.  Anyway, I think I’ll come home that weekend, too.  Shirley and I can take the Greyhound to San Jose and we’ll get there at about 4:30.  Her plane leaves the San Jose airport at 6:50, or something, so maybe she could eat dinner at our house that night.

You wouldn’t believe what a bad case of zits I’ve been getting!  Big, deep eruptions that are really ugly and hurt.  Speaking of physical disturbances, I can join your club for “those females with a vaginal fish odor.” It’s not all of the time; just occasionally.  Brunch in 15 minutes. [WTH!]

How are you, Mother dear?  Are you or are you not getting along with Dad?  Cyd? Do you miss me? I miss you (Golly, doesn’t that sound babyish?)!!

I got a letter from Andrea Sennot and she had another breakdown.  When she went to Santa Clara U last spring, she had one too.  She said that she stayed up for three days working on a paper.  That did it!  She went screaming into the infirmary and they sent her home for the weekend.  Poor kid.  Reed must be really hard.

Last night I played frisbee and twister with some guys and girls.  That’s Saturday evening excitement at Santa Cruz!

Thank you for sending my jacket and toothbrushes.  I wore Shirley’s coat (which was a jacket) until it came.

Kiss Cyd and Donne and Baly for me (you can flush Tareyton down the toilet).

Love,

Jannie

This letter makes me feel especially vulnerable, for both her 18 year old self and for me.  I can only think that I was just as insecure as my mother was at that age.   I can’t imagine how I survived after moving across the country for college, far away from my family and friends, at a time when I was so young and had experienced such a deep loss.

I don’t know how I’ve made it this far.  I wrote no letters, had no home to go to on weekends, and was most likely experiencing deep depression/greif during my first (second, third, forth, and beyond) year of college.  I find it borderline miraculous that I am still here, that things didn’t turn out worse because they definitely could have.

So through my mother’s words I have been able to gain perspective, to imagine what it felt like to be away from home and to be inching towards adulthood.  I am filled with gratitude knowing that I survived that time in my life.  I’m especially glad that I finally opened up the bag of letters.  I’m glad I loved, and lost, and was once again forced to reach into the big, great emptiness inside of me.

I have an admission (as if the whole blog weren’t a giant confession already) all the art that I make, all the writing, all the “talent” comes from this empty space – from a very deep and fundamental need to create something outside of myself, to try and fill in the gaps, to try and make sense of what I once thought was a senseless existence.  I think everyone has this hole.  Many ignore it, some fill it with pleasure, with the immediacy of addiction.  Some people fill it in with a significant relationship or two, others with children, some with jobs and money, musicians are people that fill this hole with sound an rhythm.  Whatever works!

Love and Enjoy.

In·(Mot)Her·Words |Part 6|

I moved (back) to California a few days shy of 2011.  I immediately went to visit my aunt Cyd, one of my mother’s sisters.  During that visit she handed me a small, one-page, typed and hand decorated letter, a letter my mother had written when she and my father lived together in Los Angeles.  I don’t know where this letter is ahora, but when I find it I’ll type it up along with the others I’ve posted in this series.  I only mention it because a few days ago a receive a package from this same aunt, containing several artifacts from my late mother’s youth.

The package contained:

-2 library cards (one from the San Jose library, one from a library in Kenya)

-A map of the London underground

-Business cards from Indair International, an air travel agency

-A registration certificate from the University of Nairobi (she studied ART while she was there.  I had no idea!)

-A membership card to the Games Union (she was in the swimming club)

-An international student ID card:

My mother at 20.  My hair is bigger.  Muaha!

-Several thank you cards my mother had written to her mother

-And three more letters, which I will be retyping and posting over the next few weeks.

As you might remember, my mother suffered from a rare genetic condition called Machado Joseph’s Disease, one that is passed from parent to child.  It’s symptoms include a total, significant, and progressively degenerative loss of muscle control.  This means that everything goes.  Her vision doubled, she eventually had to be catheterized, she suffered from muscle fatigue and pain, she had trouble swallowing and eventually had to have a feeding tube installed – as far as I can tell it’s kind of like turning back into a baby with a fully aware mind.

She suffered greatly as she tried to both battle the condition, and adjust to becoming wheelchair bound.  Her fate was unavoidable.  MJD is relentless.  It strikes and progresses until it’s job is done.  If only I had such focus.  No cure has been found and the only action it accepts is submission.  Major symptoms started to present themselves just six months after I was born.  Her hands stopped working and she scratched me in the face.  She couldn’t turn a page while reading the bible and in an act of frustration, tore it to pieces.  That’s how my father found her when he came home.  Looking at the shredded pages of god’s word.   Another time, she fell while carrying me in her arms.  She was 32 years young when all of this began.

I currently have two family members that are living with the disease.  I found out last week that my aunt’s (not the one that sent me the letters, the other sister) battle with MJD is getting more severe.  She was hospitalized for several days after her leg locked up.  They gave her a nerve block and sent her home.  My aunt is unmarried and although she worked most of her life, is unable to afford the full-time care that she requires as her body begins it’s final descent.  There are no emergency exits for her.  I spoke with her last weekend.  We cried together, although I tried to choke back my emotion and give her only positive vibes.  I know how terrible the disease is because I grew up with it.  I know that even though her condition is bad now, it will only get worse.  She is bedridden, and she doesn’t have ongoing assistance like my mother had when she entered this phase.  To say that I am worried is an understatement.

I find the connection I had to my mother remarkable.  Up until last year I had a hard time figuring out where she ended and I began.  As psychologists put it, I hadn’t differentiated.  I thought I was her.  Her problems were my problems, I carried them with me for too long.  Being the only woman in my family made it infinitely more difficult.  I was the only female-bodied offspring and was always being compared to my deceased mother by friends and relatives.  I thought my life was fated to be just like hers.

At some point in our lives all of us are our mothers.  We are not individuals, we are a part of them.  We are completely dependent.  Part of the process of growing up requires we shed that identity, that we realize we are not part of their bodies anymore.  We discover that we are unique individuals, that we are different from our parents, friends, communities, lovers, and siblings, yet we all share the condition of being alive, of being a part of this human family. We, in our lifetime, all have the opportunity to connect, and unite, and relish in this earthly state.  Still, we should never forget that our fates have always been dependent on women and the choices women have.

I was incredibly connected to my mother’s experience of health.  I think she knew this, but she could never fully translate and understand my actions.  She talks about wanting to light a fire under me, but never understood that part of the reason I wouldn’t budge was because I knew how much it hurt for her to see me doing things she loved to do, but couldn’t.  That hurt inside of her sometimes turned into verbal and physical abuse, and I was smart enough to know how to protect myself.  I don’t have to do that anymore.

She desperately longed for the outdoors – for gardens, mountain hikes, bike rides, and evening walks.  MJD made this challenging, but she still held onto her dreams and desires.  Below is a picture of my mother at Yosemite.  She managed to hike up mountains even when her body was failing her.  That’s fucking inspirational as hell.  This is the first time I’ve been able to see it that way.

My mom hiking somewhere beautiful

By 2008, both of my siblings had been tested for MJD.  One had it, one didn’t.  Fifty, fifty.  In February of that year I decided to get myself tested.  I was 25.  I had lived my whole life with complete assurance that I had the disease.  I had planned a career for myself based around MJD.  I knew I would have to choose a partner that could take care of me in case I got sick.  I was looking for and finding signs of MJD by the age of 22.  I knew it was only a matter of time.  I thought I was prepared for it.  This is what I had spent my whole life doing, preparing to be sick, trying to find someone who would be willing to take care of me the way my father had taken care of my mother.

My mother had a hard time letting go of the physical abilities that she was losing, and since I was 100% sure that I had the disease I simply decided not to do those things.  No dancing, no hiking, and no sports.  I couldn’t get attached to those things because I would lose them, so I never tried.  The problem was that I love art and I loved making things with my hands.  I knew I would lose this ability too, so I made things with the fury of 1000 winds.  I’d stay up all night completing projects, I’d make quick decisions and commitments, because from the plateau I’d climbed on, I saw that I didn’t have very much time.  Time.  Tricky bastard.  Perception.  Trickier bastard.

I was in Illinois, spending time with the man I was dating at the time when I got the phone call.  The test confirmed that I did not have MJD.  My life from that moment on crumbled into a million tiny pieces.  I’m only now finding my footing, returning to a path that will hopefully give me some stability.  Being and artist and being stable seem incongruous in American culture, but this feels like the only way to live.  The only way I want to live, and there isn’t time to do things I don’t want.  Everything I’d been preparing, while thinking I had MJD, was irrelevant.  I had been planning my life around an illusion.  I’d spent so much time not dancing for no good reason.  I’m not destined to relive my mother’s fate.

I have, because of these experiences, committed to making better decisions – ones based on realistic expectations of time.  I try not to rush, rush, rush, although I hope to move forward.  I think this can be seen most obviously when it comes to me and love.  As much as I want to jump right in, I tend to be a bit more cautious, a little dog-like even. Sniffing around, running away when called to, coming back, sniffing some more.  If I really like you I’ll eventually come back and bring some toy for us to play with.

In previous letters my mother wrote about living her life in “suspended animation,” without desire for sex or food or life.  That was the condition I grew up in and my experience of life was similar to hers.  I am only now gaining and interest in food, sex, and pleasure.  It’s amazing to be fully aware of my mind while doing this.  I observe myself with fascination and amusement.  The range of emotions I experience in a day is breathtaking and hilarious.  I once cried until all I could do was laugh.  I am unsuspending myself.

The letter below is one my mother wrote to her mother while my grandmother was at some kind of athletic camp in San Luis Obispo.  My grandmother was a physical education teacher at the time.  From the letter it is obvious that my mother was taking care of her younger sisters while my grandmother was away.  She was also preparing for her term in Kenya.  Both of my brothers have Swahili names, because my mother was able to master the language during her term of study.  Impressive.  I can hardly speak English.  She was three months from turning 21.

Tuesday, August 10, 1971

You will be home in a couple of days.  We have to hurry and get this house all cleaned up.  Don’t expect the Taj Mahal or nothing like that cause if you are, you will be sorely disappointed.  Now I realize how much work it takes to keep this household running.  We stopped eating as well as we did the first week just because I have decided that I am not the only responsible one around here.  I just plain got tired of preparing big meals.  Tonight we had absolutely nothing, but we weren’t hungry.  It is too hot to eat.

I got your letter today.  You are getting a little better at letter-writing aren’t you?  How long will this last?  Congratulations!!!  So far the people in Santa Barbara have not mentioned anything about the $1490.00, so let’s just do what we decided to do…Wait until my loan comes in.  I am not sure if we will have time to play much tennis before I go, but I will be glad to hear the helpful tips you learned.  I quit going to lessons.  It is too hot at 4 o’clock and I play on my own anyway.  The wall is getting a little boring, though.  Working is even more of a drag.  Oh well, Saturday is my last day, but I unfortunately have to work 8 hours that day.  I guess my clothes are O.K.  I tried to put a few in a suitcase today, but I don’t want the good things to get wrinkled (why worry..they are gonna get that way sooner or later anyway).

Today I did a couple of wash loads, ironed a little and folded clothes without the help of your younger daughters.  Cyd says that she will do some housework tomorrow.  I hope so.  I am nervous again.  Maybe I should take that librium prescription to Africa with me.  Do you have the other big suitcase?  I probably won’t need more than two of the large-sized ones that we have.  I would like to get a nice, cheap tote bag to carry a few articles of clothing and some toilet articles with me on the plane.  I’ll check Gemco tomorrow.  Oh, I need those guarantees for my Smith-Corona.  I don’t know how I am going to bring it along since it weighs so much.  Maybe I’ll just leach off of some friendly native in Africa.  It is a good reason to meet someone…”excuse me; I am a stranger in the these parts and I need to borrow a typewriter..”  Sounds good to me.  If I find that I really need it, maybe you could ship it to me, although that might be risky. Before I leave, I will leave a manilla envelope here so that you can rush off any last-minute mail to me that I might need.  My stupid I.D. card still hasn’t come yet, but I wont be leaving San Jose until Monday night anyway, so they still have time.  All of these plans are a drag.  The next time I decide to leave the country, talk me out of it.  My letters are always so cheerful, aren’t they?  Sorry about that.

Charlie (my dad!!!) may be coming here this weekend.  I hope it doesn’t make you unhappy (bahahahah, my grandmother once referred to my dad as “that black Charlie!” and not in a good way).  I told him that I will be busy getting ready to go and that I want to spend my last few precious moments with my one and only mother, so it is up to him to do what he wants to do.  You have not received much fun mail at all.  Your gym clothes came today.  I opened the package, if you don’t mind.  I opened it even if you do mind.  How’s that?  They are cute.

I started reading Souls of Black Folk.  Sometimes I wonder why you underlined some of the things you did.  You’ll have to explain a few of your markings to me.

Gonna go read for a while before I go to sleep.  Have fun on you next to last day at camp.  Say hi to Donna.

Love,

Jannie

As much as I’d like to deny it, every little thing I do is still attached to her experiences.  Fruit falls close to the tree and karma is a real thing, although I find nothing spiritual or mystical about it.  The things our parents learn and fail to learn, become both our assets and our obstacles.  My question is, how do I transform her drags into lifts?  Her anxieties into pleasures?  Can I transform her karma and mine at the same time?  I honestly am beginning to feel that this is what I am really doing with this project.  Watch how it unfolds.

Remember to love and enjoy.

In·(Mot)Her·Words |Part 5|

I took a quick trip down to LA a few weeks ago and was given something worth more than all the jewels in the world – a word document containing emails written by my mother to one of her best friends.  They represent a two month period, from October to December of 1996.  I was 13 at the time of this exchange.  In five years my mother would be dead.

She suffered from a rare genetic condition called Machado Joseph’s Disease, one that is passed on from parent to child.  It’s symptoms include a loss of muscle control, double vision, increased frequency of urination, muscle fatigue and pain, trouble swallowing – as far as I can tell it’s kind of like turning back into a baby with a fully aware mind.  She suffered greatly as she tried to both battle the condition, and reclaim her body and life after becoming wheelchair bound.  Her fate was unavoidable.  MJD is relentless.  It strikes and progresses until it’s job is done.  If only I had such focus.  No cure has been found and the only action it accepts is submission.  Major symptoms started to present themselves just six months after I was born.  Her hands stopped working and she scratched me in the face.   Another time, she fell while carrying me in her arms.  She was 32 years young when all of this began.

I find the connection I had to my mother remarkable.  Up until last year I had a hard time figuring out where she ended and I began.  As psychologists put it, I hadn’t differentiated.  I thought I was her.  Her problems were my problems, I carried them with me for too long.  Being the only woman in my family made it infinitely more difficult.  I was the only female-bodied offspring and was always being compared to my deceased mother by friends and relatives.  I thought my life was fated to be just like hers.

At some point in our lives all of us are our mothers.  We are not individuals, we are a part of them.  We are completely dependent.  Part of the process of growing up requires we shed that identity, that we realize we are not part of their bodies anymore.  We discover that we are unique individuals, that we are different from our parents, friends, communities, lovers, and siblings, yet we all share the condition of being alive. We, in our lifetime, all have the opportunity to connect, and unite, and relish in this earthly state.  Still, we should never forget that our fates have always been dependent on women and the choices women have.

I was incredibly connected to my mother’s experience of health.  I think she knew this, but she could never fully translate and understand my actions.  She talks about wanting to light a fire under me, but never understood that part of the reason I wouldn’t budge was because I knew how much it hurt for her to see me doing things she loved to do, but couldn’t.  That hurt inside of her sometimes turned into verbal and physical abuse, and I was smart enough to know how to protect myself.  I don’t have to do that anymore.

She desperately longed for the outdoors – for gardens, mountain hikes, bike rides, and evening walks.  MJD made this challenging, but she still held onto her dreams and desires.  Below is a picture of my mother at Yosemite.  She managed to hike up mountains even when her body was failing her.  That’s fucking inspirational as hell.  This is the first time I’ve been able to see it that way.  You will see evidence of her love for the outdoors in many of the letters.

A year or two prior to these letters, my mother and father remodeled the house so she could get around in it while being in a wheelchair.  This drastically improved her quality of life in many ways.

By 2008, both of my siblings had been tested for MJD.  One had it, one didn’t.  Fifty, fifty.  In February of that year I decided to get myself tested.  I was 25.  I had lived my whole life with complete assurance that I had the disease.  I had planned a career for myself based around MJD,  and I had figured out when I would get married and have children by (with the assistance of fertility doctors, of course.  Have to be careful not to pass it on).  I was looking and finding signs of MJD by the age of 22, so it was only a matter of time.  I knew the experience acutely, and was prepared for it.  This is what I had spent my whole life doing, preparing to be sick, trying to find someone who would be willing to take care of me the way my father had taken care of my mother.

My mother had a hard time letting go of the physical abilities that she was losing, and since I was 100% sure that I had the disease I simply decided not to do those things.  No dancing, no hiking, and no sports.  I couldn’t get attached to those things because I would lose them, so I never tried.  The problem was that I love art and I loved making things with my hands.  I knew I would lose this ability too, so I made things with the fury of 1000 winds.  I’d stay up all night completing projects, I’d make quick decisions and commitments, because from the plateau that I was perched on I saw that I didn’t have very much time.  Time.  Tricky bastard.  Perception.  Trickier bastard.

I was in Illinois, spending time with the man I was dating at the time when I got the phone call.  The test confirmed that I did not have MJD.  My life from that moment on crumbled into a million tiny pieces.  I’m only now finding my footing, returning to a path that will hopefully give me some stability.  Being and artist and being stable seem incongruous in American culture, but this feels like the only way I can live my life.  Everything I’d been preparing, while thinking I had MJD was, in reality irrelevant.  I had been planning my life on the foundation of an illusion.  I’d spent all this time not dancing, for no good reason.  I’m not destined to relive my mother’s fate.

In the previous post, my mother wrote about living her life in suspended animation, without desire for sex or food or life.  That was the condition I grew up in and my experience of life was similar to hers.  I am only now gaining and interest in food, sex, and pleasure.  It’s amazing to be fully aware of my mind while doing this.  I observe myself with fascination and amusement.  The range of emotions I experience in a day is breathtaking and hilarious.  I once cried until all I could do was laugh.

I am also going touch a bit on money and family structure, and how it was viewed in our family, since this is something I’m trying to deconstruct and examine right now.  We weren’t poor, but we weren’t rich either.  I never had a need for food or shelter.  The lights always stayed on.  I was never cold.  But still, there never seemed to be enough of it for us kids to get past those basic necessities.  We had to work hard for anything we got, both inside and outside of the home.  Chores were a big part of our family life.  I got my first real job when I was 14.

My mother, unable to work, never contributed to the household financially.   I don’t know how much this had to do with the disability or her preference to stay home and not work.  I get the idea from my father that she and working didn’t get along.  I currently have a brother who is living with MJD, and he works his ass off.  She stayed home and raised us children even thought she’d gone to the trouble of getting a masters degree from Stanford.  As far as I know, my father helped pay for all of this.

At first look, it seems like my parents had a very traditional relationship.  My father worked, providing money so my mother could cook, clean, and take care of us chilluns.  Later, he not only provided for us financially, but became a major caretaker for my mother as her disease progressed.  She became incapacitated in every imaginable way, completely unable to care for herself.  He worked around the clock with very little support.  My mother was the only baby my father looked after.  He changed her diapers, administered medications (including methadone), and since she had yet to enter menopause, was familiar with monthly female cycles.  He must have really loved her.

My mother talks about a force-field that she felt was present for most of her marriage, and how my father and I had a very loving and playful relationship.  I don’t know where those days went.  I found that the more I grew, the more I began to look like my mother, the more distant treatment I received from my father.  The worst was the last time I lived with him.  My hair was short during that period, and all the neighbors kept calling me Jan.  For him I’m sure it was like living with a ghost.  I promised myself that I would never live with him again after that year.  I felt projected upon, like my father could only see Jan when he was looking at me.  I felt actively pushed away.  Moving back to California, but finding another place to rest my head has eased tensions significantly.   We have our moments of light and laughter.  I think that he is scared for me and my future, that there won’t be anyone to take care of me once he is gone.

This letter gives me a deeper look into their marriage, and some of the things my mother struggled with.  She mentions what feminism means to her, and admits that she struggles to ask for help.  I wonder whether or not my mother would have been accepting of my current lifestyle, but based on this letter, I can only assume that she would have been willing to give me the same thoughtful advice about love and dating.  I like to pretend that she actually wrote these letters for me.

I approach this post with sadness, because this is the last one in this series.  My mother’s sister tells me that she has more letters in her garage, so part of this weekend will be spent looking through dusty boxes.

I don’t quite understand this force of love, or maybe it’s that I’m starting to understand it too well.  I think it has something to do with why these letters finally made their way to me.  The woman who gave them to me has been in my life since before the time of my mother’s passing.  She could have given them to me at any time over the past 10 years, but I guess I wasn’t ready for them until now.

She and my father began dating about six months after my mother died.  I wonder if my mother knew how good her matchmaking skills were.  Her description of my father as a lover, husband, partner, and caretaker probably had something to do with why they got together.  Rachel knew what she’d be getting long before they ever had a relationship, and perhaps wanted to know what it was like to be with a man who could handle commitment down to the very last breath.

Here is the fifth installation in a series I like to call In (Mot)her Words.

Subj: Re: first of the week
Date: Wed, Dec 18, 1996 5:03 PM EDT
From: janc@skeezix.Stanford.EDU

dear rachel:

do you know that this little dog is teaching me about boundaries? at first, when he was very much a baby, i felt sorry for him when he would whimper and whine.  i’d get up at 6am to let him out to do his pee and business. i’d let him back in whether i was ready to deal with him or not.

but now, when he starts misbehavin’, out the door. and when he bites, he gets the rolled-up paper rx. he goes wild when charlie, lolli, and sali come home, so if they don’t handle him, out the door.

i haven’t started evicting everyone to my backyard when they work my nerves, but i am seeing that i must have self-control. not just the kind that you exercise when you are trying to lose weight. self-control means giving nice things to yourself, being kind to yourself, not carrying the weight of the deep and dirty past around to browbeat and discourage you from making plans for today. see! some old dogs can learn new tricks!

wow! still waters run deep. i used to be a feminist, i guess. but it was with a rage against the tyrannies of my dad generalized to all men. maybe some of my athleticism was an attempt to bridge the gap between my femininity and my fear of it. i loved physical activity and it filled the gap that living in waspvilee, san jose made in my social life. i had little male attention.

i loved my next-door-neighbor, greg putney. we spent hours in his sandbox talking about who-knows-what. his mom tutored us in spanish verbs. I defended him against the scoffing criticisms of the neighborhood kids. He was flat-footed, gangly, red-haired and freckle-faced, unattractive. But he was my friend…until he told me in a valentine’s day card,”…and you’re the only girl i love.” that scared me clean away from greg. i never spoke to him again after that.

i was a virgin until i was 18. i gave myself away without scrutinizing the recipient of such a gift. but i didn’t even know i was an asset. i was too concerned about concealing my scars, to even really require quality treatment from a man. that man was charlie. he was my first and last, but not my only.

the gahd-father of soul said, didn’t he?…”this is a man’s world. but it wouldn’t be nothin’ no noot one little thing, without a woman or a girl.” i got furious every time i heard those dumb lyrics. to me they said that men mess up and women clean up after them.

i’ve been playing those lyrics out for a coupla decades now. it’s overkill. i’m no even gonna blame dolores or donald for mis-teaching me, cause dolores is old, has her own husband and agenda, and donald is dead.

this is a part of carrying my own load. getting help. or just leaving it.
independence used to be a good thing. the only thing. no more!! help me.  charlie wants to help me, but i’ve been too strong to let him be the man (not macho) he has longed to be. my strength has been a force-field repelling him from loving me the way i say i want to be loved. that’s why he says it is a privilege to take care of me. now that i am physically weak, i have to accept help.

i watch him with leslie. they talk baby talk together, scat and banter words and sounds back and forth like ping pong, play keep-away with elmo, they cuddle and wrestle. the force-field is not up between them.

i am unravelling the long, tight cord that binds me still. i just pray that jehovah will help those who have gotten tangled up and have suffered rope burn at my hands..my children. i know he forgives me. i love that song by regina belle, “if i could.” do you know it?

selecting a mate is a tricky business. you are better off if you can keep your head about you, but HOW when your your heart and body are crying out. i just returned a tape to the library by cp estes (author of women who run with the wolves. i never read that one). it is called “how to love a woman” she is kinda out there, but i got several points from her message.

find someone who can learn, who can laugh at himself (or learn to laugh), who feels your pain when he has caused it (compassion), with whom you share common interests, activities, whose little idiosyncranies won’t wear out your last nerve, with whom you share basic values. she also talked about the flow, ebb, and flow of life. new love is like a 4-alarm fire, but what happens when it cools down and seems to have died? then she tells the story called “east of the sun,
west of the moon.” it’s the story of hows the beast or bear is transformed into a beautiful prince by what power? LOVE. she does speak much about love-making, but says that, sexual sharing needs to come, not first (the way i did it), but last.

it sounds like you are frightened by this new awakening. i would be, too. i would be wondering if i could even make a healthy choice based on my previous relationships. “i’d be plagued with “what if’s”. what if he’s just playing the mac daddy, biggo biggo; wants another conquest? what if jesse and he don’t make it? what if i am not sexually up-to-par?

have faith, dear rachel. when and if the time comes, talk over everything, take your time, ask him many questions. then ask some more. observe him in a variety of settings, with different people, age groups, your family, jesse. watch him when he doesn’t know it. (is that spying?), persevere in prayer.

i la lu,
jan

Love and enjoy.

In·(Mot)Her·Words |Part 4|

I took a quick trip down to LA a few weeks ago and was given something worth more than all the jewels in the world – a word document containing emails written by my mother to one of her best friends.  They represent a two month period, from October to December of 1996.  I was 13 at the time of this exchange.  In five years my mother would be dead.

She suffered from a rare genetic condition called Machado Joseph’s Disease, one that is passed on from parent to child.  It’s symptoms include a loss of muscle control, double vision, increased frequency of urination, muscle fatigue and pain, trouble swallowing – as far as I can tell it’s kind of like turning back into a baby with a fully aware mind.  She suffered greatly as she tried to both battle the condition, and reclaim her body and life after becoming wheelchair bound.  Her fate was unavoidable.  MJD is relentless.  It strikes and progresses until it’s job is done.  If only I had such focus.  No cure has been found and the only action it accepts is submission.  Major symptoms started to present themselves just six months after I was born.  Her hands stopped working and she scratched me in the face.   Another time, she fell while carrying me in her arms.  She was 32 years young when all of this began.

I want to emphasize the connection I had to my mother in this post, because I find it remarkable.  Up until last year I had a hard time figuring out where she ended and I began.  As psychologists put it, I hadn’t differentiated.  I thought I was her.  Her problems were my problems, I carried them with me till very recently.  Being the only woman in my family made it infinitely more difficult.  I was the only female-bodied offspring and was always being compared to my deceased mother by friends and relatives.  I thought my life was fated to be just like hers.

At some point in our lives all of us are our mothers.  We are not individuals, we are a part of them.  We are completely dependent.  Part of the process of growing up requires that we shed that identity, that we realize we are not part of their bodies anymore.  We discover that we are unique individuals, that we are different from our parents, friends, communities, lovers, and siblings, yet we all share the condition of being alive, so we all have the opportunity to connect, and unite, and relish in this state.  Still, we should never forget that our fates have always been dependent on women and the choices women have.

I was incredibly connected to my mother’s experience of health.  I think she knew this, but she could never fully translate and understand my actions.  She talks about wanting to light a fire under me, but never understood that part of the reason I wouldn’t budge was because I knew how much it hurt for her to see me doing things she loved to do, but couldn’t.  That hurt inside of her sometimes turned into verbal and physical abuse, and I was smart enough to know how to protect myself.  I don’t have to do that anymore.

She desperately longed for the outdoors – for gardens, mountain hikes, bike rides, and evening walks.  MJD made this challenging, but she still held onto her dreams and desires.  Below is a picture of my mother at Yosemite.  She managed to hike up mountains even when her body was failing her.  That’s fucking inspirational as hell.  This is the first time I’ve been able to see it that way.  You will see evidence of her love for the outdoors this in many of the letters.

A year or two prior to these letters, my mother and father remodeled the house so she could get around in it while being in a wheelchair.  This drastically improved her quality of life in many ways.

By 2008, both of my siblings had been tested for MJD.  One had it, one didn’t.  Fifty, fifty.  In February of that year I decided to get myself tested.  I was 25.  I had lived my whole life with complete assurance that I had the disease.  I had planned a career for myself based around MJD,  and I had figured out when I would get married and have children by (with the assistance of fertility doctors, of course.  Have to be careful not to pass it on).  I was looking and finding signs of MJD by the age of 22, so it was only a matter of time.  I knew the experience acutely, and was prepared for it.  This is what I had spent my whole life doing, preparing to be sick, trying to find someone who would be willing to take care of me the way my father had taken care of my mother.

My mother had driven herself crazy by wanting things that she could not have, and since I was 100% sure that I had the disease I had decided not to do those things.  No dancing, no hiking, and no sports.  I couldn’t get attached to those things because I would lose them, so I never tried.  The problem was that I love art and I loved making things with my hands.  I knew I would lose this ability too, so I made things with the fury of 1000 winds.  I’d stay up all night completing projects, I’d make quick decisions and commitments, because from the plateau that I was perched on I saw that I didn’t have very much time.  Time.  Tricky bastard.  Perception.  Trickier bastard.

I was in Illinois, spending time with the man I was dating at the time when I got the phone call.  The test confirmed that I did not have MJD.  My life from that moment on crumbled into a million tiny pieces.  I’m only now finding my footing, returning to the path that I was supposed to follow.  Everything I’d been preparing for was made irrelevant.  I was planning my life on an illusion.  I’d spent all this time not dancing, for no good reason.  I was not destined to my mother’s fate.

There is a line in the letter below, a part where my mother talks about living her life in suspended animation.  That was the condition I grew up in and my experience of life was similar to hers until recently.  I am only now gaining and interest in food, sex, and pleasure.  It’s amazing to be fully aware of my mind while doing this.  I observe myself with fascination and amusement.

I am also going touch a bit on money and family structure, and how it was viewed in our family, since this is something I’m trying to deconstruct and examine right now.  We weren’t poor, but we weren’t rich either.  I never had a need for food or shelter.  The lights always stayed on.  I was never cold.  But still, there never seemed to be enough of it for us kids to get past those basic necessities.  We had to work hard for anything we got, both inside and outside of the home.  Chores were a big part of our family life.  I got my first real job when I was 14.

My mother, unable to work, never contributed to the household financially.   I don’t know how much this had to do with the disability or her preference to stay home and not work.  I get the idea from my father that she and working didn’t get along.  I currently have a brother who is living with MJD, and he works his ass off.  She stayed home and raised us children even thought she’d gone to the trouble of getting a masters degree from Stanford.  As far as I know, my father helped pay for all of this.

They, in many ways, had a very traditional relationship.  My father was a classic patriarch, providing money so my mother could cook, clean, and take care of us chilluns.  Later, he not only provided for us financially, but became a major caretaker for my mother as her disease progressed.   He worked around the clock with very little support.

We sat down to meals together every night.  We read from the bible during those meals.  I liked this part of family life very much, eating together, the bible stuff…not so much.  I still have trouble feeding myself if I don’t have anyone to do it with.  I’m a family eater (hmmm, that sounds slightly cannibalistic).

Also, if you’ve read Beloved, you’ll know why my mother’s description of me freaks me the fuck out.

I don’t quite understand this force of love, or maybe it’s that I’m starting to understand it too well, but I think it has something to do with why these letters finally made their way to me.  The woman who gave them to me has been in my life since before the time of my mother’s passing.  She could have given them to me at any time over the past 10 years, but I guess I wasn’t ready for them until now.

Here is the forth installation in a series I like to call In (Mot)her Words.

Subj: Re: Rainy night II
Date: Fri, Dec 13, 1996 1:00 PM EDT
From: janc@skeezix.Stanford.EDU

dear r&r:

this week came and went and my attentions didn’t include much e-mailing. elmo has become my focal point since it’s my job to make sure he does his business outside–every two hours. it’s time for a transition to the outside, but not until we buy a doghouse and mend the gate. he loves to go on walk-rides with me on the scooter. when i put my jacket on, he knows it’s time to go. i get the motor going, and he’s right there, sitting on the floor, right under my feet.

leslie is going to s. carolina for two weeks to visit her best friend who moved last spring. we’ll miss her. she is a wonderful child. she is so different from me. loves to stay in the house, dressed in house clothes,watching tv. won’t even walk around the corner to the library with me. doesn’t like libraries. loves the mall. doesn’t want to go to the great out-of-doors. loves cosmetics…not make- up yet, but is always manicuring and pedicuring, combing and brushing. loves shoes. craves sweets. She holds her body like sweetie mama. i tried for the longest to light a fire under her, find something that inspired her..a hobby…anything. then, I realized that all of the resistance came because different things light our fires.

gotta go.

when is the deadline for your enabling gardener? i’m glad you are enjoying your new-found man-friend. i know what you are feeling regarding a deadenning of you womanliness. i have had to do it to a certain extent with charlie because he has a low tolerance for femininity.

i have put my whole life on hold. i don’t have much passion or desire for food, activities (including sex). i live in a state of suspended animation. i want to find a way to live, but i just don’t know how to do it without the ability to hike, play the flute, ride a bike etc. it would have been easier for me to be born in a wheelchair than to be stripped first.

we don’t celebrate any holidays. charlie never did. my mother does all of them with a vengeance and always has. we had fairly sumptuous holidays. they were a brief hiatus from the daily dose of rage. but when i learned that dec. 25th was designated as christ’s b-day because emperor constantine wanted to consolidate his empire, the pagans and the christians. he used the pre-existing roman celebration called the saturnalia which was the “re-birth of the invincible sun,” the transition from winter solstice to the lengthening of days. it has been celebrated on this date ever since.

anywayz…
i la lu,
jan

Love and enjoy.

In·(Mot)Her·Words |Part 3|

I took a quick trip down to LA a few weeks ago and was given something worth more than all the jewels in the world – a word document containing emails written by my mother to one of her best friends.  They represent a two month period from October to December of 1996.  I was 13 at the time of this exchange.  In five years my mother would be dead.

She suffered from a rare genetic condition called Machado Joseph’s Disease, one that is passed on from parent to child.  It’s symptoms include a loss of muscle control, double vision, increased frequency of urination, muscle fatigue and pain, trouble swallowing – as far as I can tell it’s kind of like turning back into a baby, but with a cognitive brain that remains intact.  She suffered greatly as she tried to both battle her illness, and reclaim her body and life after becoming wheelchair bound.  Her fate was unavoidable.  MJD is relentless.  It strikes and progresses until it’s job is done.  If only I had such focus.  No cure has been found and the only action it accepts is submission.  Major symptoms started to present themselves just six months after I was born.  Her hands stopped working and she scratched me in the face.   Another time, she fell while carrying me in her arms.  She was 32 years young when all of this began.

She desperately longed for the outdoors – for gardens, mountain hikes, bike rides, and evening walks.  MJD made this challenging, but she still held onto her dreams and desires.  Below is a picture of my mother at Yosemite.  She managed to hike up mountains even when her body was failing her.  That’s fucking inspirational as hell.  This is the first time I’ve been able to see it that way.  You will see evidence of her love for the outdoors this in many of the letters.

A year or two prior to these letters, my mother and father remodeled the house so she could get around in it while being in a wheelchair.  This drastically improved her quality of life in many ways.

I am also going touch a bit on money and family structure, and how it was viewed in our family, since this is something I’m trying to deconstruct and examine right now.  We weren’t poor, but we weren’t rich either.  I never had a need for food or shelter.  The lights always stayed on.  I was never cold.  But still, there never seemed to be enough of it for us kids to get past those basic necessities with the family income.  We had to work hard for anything we got, both inside and outside of the home.  Chores were a big part of our family life.  I got my first real job when I was 14.

My mother, unable to work, never contributed to the household financially.   I don’t know how much this had to do with the disability or her preference to stay home and not work.  I get the idea from my father that she and working didn’t get along.  I currently have a brother who is living with MJD, and he works his ass off.  She stayed home and raised us children even thought she’d gone to the trouble of getting a masters degree from Stanford.  As far as I know, my father helped pay for all of this.

They, in many ways, had a very traditional relationship.  My father was a classic patriarch, providing money so my mother could cook, clean, and take care of us chilluns.  Later, he not only provided for us financially, but became a major caretaker for my mother as her disease progressed.   He worked around the clock with very little support.

We sat down to meals together every night.  We read from the bible during those meals.  I liked this part of family life very much, eating together, the bible stuff…not so much.  I still have trouble feeding myself if I don’t have anyone to do it with.  I’m a family eater (hmmm, that sounds slightly cannibalistic).

I don’t quite understand this force of love, or maybe it’s that I’m starting to understand it too well, but I think it has something to do with why these letters finally made their way to me.  The woman who gave them to me has been in my life since before the time of my mother’s passing.  She could have given them to me at any time over the past 10 years, but I guess I wasn’t ready for them until now.

Here is the third installation in a series I like to call In (Mot)her Words.

Subj: Re: rainy night
Date: Fri, Dec 6, 1996 9:25 PM EDT
From: janc@skeezix.stanford.edu
To: RResearch@aol.com

dear r&r:

you are an r&r kinda gal. easy to talk to. kind and, well, restful and relaxing. that’s nice. if you read this today, your date with glenn is future; tomorrow, it’s past. i never dated. the tv message is that it’s nerve-racking business. there must be a lot of subterfuge mixed up in it. you know, making yourself seem a certain superhuman way. covering pimples and exposing the goods. like commercials. everyone knows that eating frosted flakes won’t really turn you into michael jordan, but let’s just pretend and sell a lot of corn and sugar to boot.

maybe this is really sour grapes. maybe i really wanted a man to feign desirable qualities all for my benefit. to put on an extra dab of brylcream just to impress me. to make me feel special. but i having been with charlie for almost 23 years to be entertaining such vanity. his love was natural, untamed, unadorned, undeodorized, even funky. when he tries to do romantic things, he is really trying. the flower thing. he shoves the bouquet or potted plant at me without a word. i always exclaim about his thoughtfulness and the flowers’ beauty, but it is never a Kodak moment.

he shows his love in staccato. in the morning light, he looks at me a say, “what a beautiful woman.” he tells me that he wishes he could do more for me. i know he’s talking about money supplies. if he could, he would. in the book mars and venus in the bedroom, dr. john gray mention the necessity of romance to the life of a marriage. taking your wife to the movies, the theatre, to dinner etc. are essential to helping a woman feel special. charlie jokingly said now he knows why black men can’t be romantic…;it takes money.

i will share my dreams of a garden with you, of course. without money (not to wear out this theme) we haven’t been able to buy the pressure-treated boards to build the raised beds, not to mention the plants with which to fill them. i’ll write you later about it.

happy weekend,
jan

In·(Mot)Her·Words |Part 2|

I took a quick trip down to LA a few weeks ago and was given something worth more than all the jewels in the world – a word document containing emails written by my mother to one of her best friends.  They represent a two month period from October to December of 1996.  I was 13 at the time of this exchange.  In five years my mother would be dead.

She suffered from a rare genetic condition called Machado Joseph’s Disease, one that is passed on from parent to child.  It’s symptoms include a loss of muscle control, double vision, increased frequency of urination, muscle fatigue and pain, trouble swallowing – as far as I can tell it’s kind of like turning into a baby again, but with a cognitive brain that is still intact.  She suffered greatly as she tried to both battle her illness and reclaim her body and life after becoming wheelchair bound.  Her fate was unavoidable.  MJD is relentless.  It strikes and progresses until it’s job is done.  No cure has been found and the only action it accepts is submission.  Major symptoms started to present themselves just six months after I was born.  Her hands stopped working and she scratched me in the face, and another time she fell while she carrying me in her arms.  She was 32 years young.

She desperately longed for the outdoors – for gardens, mountain hikes, bike rides, and evening walks.  MJD made this challenging, but she still held onto her dreams and desires.  You will see evidence of this in many of the letters. A year or two prior to these letters, my mother and father remodeled the house so she could get around in it while being in a wheelchair.  This drastically improved her quality of life in many ways.

I don’t quite understand this force of love, or maybe it’s that I’m starting to understand it too well, but I think it has something to do with why these letters finally made their way to me.  The woman who gave them to me has been in my life since before the time of my mother’s passing.  She could have given them to me at any time over the past 10 years, but I guess I wasn’t ready for them until now.

Here is the second installation in a series I like to call In (Mot)her Words.  I’ve included three letters in this entry.

Subj: time flies, huh?
Date: Wed, Oct 23, 1996 3:40 PM EDT
From: janc@skeezix.Stanford.EDU

dear rachel:

is d-day fast approaching? how his the mega project going? how fast do you type? your keyboard must be smokin!

on our way back from our one-night getaway, charlie and i heard a man who had phenomenal memeory. Of course he was selling a program which promises to do the same for everyone who submits to it, even if they have sustained brain injury and loss of function, old or young. i am a glutton for such self-help swindles.
i bought “making love work” by dr. barbara de angelis 4 years ago. i have a husband who is much better at showing his love. whether there is a connection between the two, yo no se. whether i am better at being a loving person, I somehow doubt it. but they got my money.

since we remodeled the house, i lose things by just putting them down. i guess, I haven’t really made this house a home in my own mind and don’t have places for every category of thing. i do know where, oh oh gotta go.

bye bye,
jan

Subj: Re: almost there
Date: Sat, Nov 16, 1996 11:03 PM EDT
From: janc@skeezix.Stanford.EDU

it’s saturday night, 11/16, and i’m just now getting around to returning your message. so glad to hear that both you and jesse are coping. i hope family therapy helps. let me know.

have you ever had therapy? if so, did it help you? my first impulse is to say, “no. alla dat talk talk talk and cry cry cry, with no answers given or suggestions made was a waste of time. but now i can see that it has been leading me to this point. i must carry my own load. there has been help for me. my family’s support, encouragement from friends like you. my job is to endure until…i’m not even gonna try for happiness. that just comes when the conditions within my heart/body accept it with ease.

so, good night, dear rachel. is your roomate still with you? i know you’ll enjoy her for as long as you can.

i la lu,

jan

Subj: Re: Will you?
Date: Tue, Dec 3, 1996 1:40 PM EDT
From: janc@skeezix.Stanford.EDU

dear rr:

if you are looking for a colorful, lush, accessible plot with raised beds, filled with soft, organic soil easy to work from a wheelchair, i’m not the one. if you can use wishes, hopes, dreams of how i would like things to be, i’m the one. The superstucture has been laid out for 3 years. the fine-tuning has yet to be done. I can no longer leave my chair, not for a second, without injurious results. i need to find someone to build the raised beds cause charlie, although quite capable, hasn’t the time. my input would be incidental, not substantial. i don’t feel good about what i have, so i don’t feel great about talking bout it.

i’m so glad to hear that jesse has lightened up on the emotional jag. life is tough. i would change things to be nicer, fair, compassionate, abundant for all, but the way folks are, billy bully would take more than his share, punch waldo in the nose for not willingly giving him his lunch, find other billy bullies, begin a ring of organized crime…and the beat goes on. so we mothers have a dilemma. how to raise fire-resistant kids. kids who can tolerate some pain but at the same time not develop a callous so thick and hard so as to shut out love, kindness, and generosity.

i have no answers. all i know is that i haven’t been able to prevent the pain. All i can do it soothe the wounds. oh, i don’t subject them (leslie) to my mother or force them to walk down to the corner store knowing that billy bully is just waiting to beat butt and snatch change. but when they meet trouble, we listen and sympathize. i have gotten more deeply involved in their difficulties, by writing letters, making phone calls, sometimes angry in tone. that has worked to their detriment. now when leslie tells me how mrs wooly docked her assignment 10%, but gave melissa, her pet, help, i feel outraged and want to call her. instead, I ask leslie if she wants me to. leslie says no. why? she can handle it. and i want her to. so i back off.

i didn’t learn about any of this in my growing up. all i knew was that I had to get A’s in school, be the best athlete i could, and put up with my parents’ excesses (alcohol, non-communication). i am now just learning how to carry my own load. it gets back-breaking sometimes. but with god’s help i’m gonna try. thanks for being there for me, rachel. i la lu.amani and salim have learned how to keep me offa theirs. now, i can better help lolli to carry hers. she is well on her way.

i have an appt. with my neurologist this afternoon. i wanna take nac and need her for the prescription. i was under the weather, the bed, and felt like i was getting close to being under the ground yesterday.

that’s why i couldn’t call you back.

enjoy the day, sweetie pie,

jan

Love and Enjoy.

In·(Mot)Her·Words

I took a quick trip down to LA a few weeks ago to celebrate my father’s sister’s birthday.  She turned 65 this year.  My aunt is a very kind woman.  By the time she was forty, she’d lost both of her parents.  She had dreams that she felt she couldn’t indulge because there were too many practical things to take care of.  I can’t say that I know my aunt very well.  We don’t see each other as often as either of us would like.  I can say that I have always felt deep affection for her.  We share a passion for design and clothes, and she often gives me advice on how to better nurture myself.  She is thoughtful, and hope with every bone in my body that some of her girlhood dreams manifest during this lifetime.

During that trip I was given something worth more than all the jewels in the world – a word document containing emails written by my mother to one of her best friends.  They represent a two month period from October to December of 1996.  I was 13 at the time of this exchange.

I don’t quite understand this force of love, of maybe it’s that I’m starting to understand it too well, but I think it has something to do with why these letters finally made their way to me.  The woman who gave them to me has been in my life since before the time of my mother’s passing.  She could have given them to me at any time during the past 10 years, but I guess I wasn’t ready for them until now.  How does love factor into this?  I’ll try to explain my hoaky thinking.

A few months ago I had a boy visit me – a boy that I commonly refer to as “The Gypsy.”  My friend Blake likes to tell me that I am not being politically correct, and that I should really call him, “The Roma,” but I refuse.  He is not a Roma.  I don’t mean it in a derogatory way, I mean it in the way Urban Dictionary defines it:

A person whom chooses to travel, and does not possess permanent residence or stability. This term is often referred to anyone practicing such a lifestyle regardless of ethnicity or background.

I also like this definition, although it doesn’t apply in this case:

Modern gypsies, not to be confused with hippies, often play the tambourine and perform some form of belly dance fusion/burlesque or fire dance. Many practice an earth based spirituality. They make their own clothes and wear corsets, dreadlocks and/or adorn their hair with colorful braided yarn extensions.

Hahahaha.  Awesome.

Before leaving to gyp it up, the boy asked for my address.  “Mail…letters…what a concept,” I thought.  I asked for his, in-kind, and so started a brief exchange.  He sent me a really nice gift, probably one of the most thoughtful objects anyone has ever given me, and in return I sent him baked goods.  This was a big deal for me.  It had been ages since I’d baked, and doing so took me back to nine years old, a time when baking was my primary activity.  It was a nice feeling.  It was wonderful to be able to be kind to a man, and have that kindness accepted.  At then end of my last significant relationship, even my thoughtful gestures were misinterpreted.

It was also nice because my wanting to be kind to him spilled over into other areas that I didn’t expect.  Of course I couldn’t send all the cookies to him, so my housemates got a fair portion of them, as did a portion of my coworkers since I made the cookies with both him and friend that was leaving town in mind.  At least 30 people directly benefited from one act of kindness on my part and it was all motivated by my strong feelings of affection, dare I say love, for a person/people.  Bear with me now.

There came a point where I had to stop sending The Gypsy things because he went to do what gypsies do, which usually does not include having a permanent place to send letters.  But sending things through the mail felt so good that I couldn’t stop.  I sent a postcard to everyone I could think to send one to.  I sent a letter to my Grandma, something I hadn’t done in years.  I sent handmade underwear to a friend and sent it through the mail.  It was amazing.

And then, out of nowhere, these letters from my mom fell in my lap.  Remember that song by The New Radicals?  This one:

I love that this video takes place in a mall.

So what have I learned?  Well maybe, just maybe, I’m getting back what I gave.  Why didn’t I do this sooner?  I need to give a lot more, but only out of love.  That seems to be the only way to make this thing work.

Here is the first letter written by my mother to her college bestfriend.  They were written four years before her death.  Two years from these letters she would become bedridden and completely dependent on the care of in-home nurses and my father.  My father has been dating this same friend since my mother died.  It’s not a surprise after reading these letters.  Life’s rich, yes?

I call this series In (Mot)Her Words, and guess what else?  There is life after death.

Subj: Re: Hangin in there
Date: Fri, Oct 18, 1996 6:58 PM EDT
From: janc@skeezix.Stanford.EDU

dear rachel:

this is the weekend of charlie’s and my overnight getaway at hidden villa, the oldest youth hostel in the country. we have had two over nighters there for two consecutive springs. many kids, a few parents for support, and always rain. So we decided to try fall. this is the first weekend it looks like rain. i’m gonna try to accept life with open arms instead of grumbles. that means the wood burning stove will be stoked up and we’ll have a cuddly good time. isn’t that right?

i’m so glad to hear about your new chance to become a mom. the circumstances that brought about this opportunity are bitter. but it is sweet that both you and lisa can benefit, and for a long time. life is like that-bitter SWEET, with emphasis on the sweet.

strep: leslie is a carrier. without symptoms, her cultures are positive. she just finished a 10-day anti-biotic regiment. now she needs another culture to find out if it’s gone. my kids never loved school so much that they chafed at the bit to get back. illness is not bad in leslie’s eyes. she got sent home tues with menstrual cramps, and loved every minute of it. amani was often sick at school with asthma. he always says he is fine, even when i hear wheezing. anything short of hospitalization is fine to him. salim is as healthy as a horse. he has never been seen by our family practitioner-it’s been about three years. when he does get sick, it’s a cold, and he gets paranoid, starts worrying about joseph disease, and acts right pitiful.

i hope jesse is all better now. say hello to him for us. i am thinking about his need to wrestle. have you thought about any sports for him? amani and salim did t-ball at that age.

sugar’n'spice,

jan

I am in tears.

Love and Enjoy.