Let me start this blog by saying… I am so fucking sick of
myself. By the way, if your delicate ears cannot handle a few swear words (at
least 2-300 per paragraph) this is not the blog for you.
And also, this is a super long blog, more like a novel… or a
police complaint.
Many of you have asked how I am. I hesitate to answer
because it ain’t so pretty. However, be careful what you ask for because today
I am going to tell you… I apologize in advance.
In all honesty, I feel like a death row inmate waiting for
my execution for a crime I did not commit (or, did I?). Dead girl (not)
walking. I have even considered my last meal (Mrs. Wilkes Savannah, Georgia
fried chicken, mashed potatoes and gravy, green beans, biscuits and 16 glasses
of sweet tea). As you know, my French doctor has confirmed that I am in the
final stages of ALS. I could die at any moment… but here is the thing… I keep
waking up every fucking morning.
When I was young, my sister and I would get ready for bed…
put on our floor length nightgowns and kneel by our twin size canopy beds,
clasp our hands and pray…
“Now I lay me
down to sleep,
I pray the Lord my soul to keep,
If I should die before I wake,
I pray the Lord my soul to take”
I swear to God,
we said this prayer every night. I would say it, but did I really mean it? I
was so young, but here I am, aged 46, finding myself laying here sacked with
ALS looking out my window of the Palais Royal and uttering the same prayer…
“Now I lay me
down to sleep,
I pray the Lord my soul to keep,
If I should die before I wake,
I pray the Lord my soul to take”
But this time, I
mean it. I am ready to go but every morning I wake up and think to myself,
“What are you still doing here, moron?”
For the past almost 6 years, ALS has been hard… very hard. But
now, these past 2 months have been complete hell and I did not think that I was
cut out for this kind of struggle and I was resigned to let myself succumb to
the inevitable. I mean, how would you feel if you could not… hold your head up,
open your mouth wide enough for a toothbrush to fit, swallow your favorite chai
tea with vanilla soy milk, eat even old lady mashed potatoes or a fucking
raspberry, or most importantly, dictate into your voice recognition software…
which bring me to my next grievance…
Autonomy is the key to life. It truly is. Try having it
taken away from you for one day and you will realize the importance of it. My
voice recognition software was my autonomy… my freedom. I emancipated myself
from ALS with my computer. I could do everything… my blog, my book, my shop, my
emails, surf the web, write letters, research exhibits and do exactly as I
pleased… and now that has all been taken away because my voice is too weak… and
it is quite frankly, driving me crazy. I now have to rely on my 3 caregivers.
Caregivers they are… executive assistants they are not. Try asking a grown
Filipino man to design a Paperless Post greeting card for you. Let me tell you,
it’s hell… Hell on earth. They are ready to kill me… and the feeling is mutual.
So I continue to ask myself, “Why the fuck am I still here?”
I thought that I had my house in order and was ready to
depart. I even went to my beloved church and said to The Man, “Dude, I’m ready.
Let’s go.”
However, for some reason, I am still here. Why? Why? Why? What
else do I have to do, to accomplish, to resolve, to prove?
It turns out I don’t have to do any of those things… I only
have one thing to do… continue to raise Gracie. Not that any child is ever
“ready” to have their mother die but I thought that Grace was “ready enough.”
How stupid was I? For Grace’s entire life she has been perfect. She has never
even had a “time-out.” I never even needed to baby proof our house because
Grace never touched anything… she just sat there, darling as ever, looking at
her books. Even her teenage years were flawless. And then, #April2016 happened.
Gracie decided to turn into an asshole. An asshole with support… let me
explain.
I am not a conventional mother. That comes with pros and
cons. Grace is my life and she can do no wrong in my book until she does and
then my “unorthodox” parenting skills come into play. My husband explains it
as, “You let Gracie slide and slide and slide and then you explode.” C’est
vrai. It usually goes like this, “Gracie, please clean your room. Gracie, clean
your room. GRACIE, CLEAN YOUR FUCKING ROOM!” She usually just ignores me and
cleans her room whenever she sees fit and I usually just let it slide. However,
there are certain things that I do not let slide… school work, job
responsibilities, politeness, thank you cards and taking a minuscule
responsibility in me.
The first day that I was diagnosed with ALS, I made a
promise to myself not to burden Gracie with my bullshit. This was my disease
and I wanted her to have as normal of childhood as possible. David and I have
made this possible, thank you very much. However, occasionally, little Gracie
is expected to help out. From time to time, caregivers flake… they are human
(which is not an excuse, in my book). This is when Gracie has to help out, for
fucks sake. She hates it, I hate it, David hates it… but it is necessary
sometimes. Such is the case of #April2016. I had to unexpectedly fire my new
caregiver because he was caught taking pictures of me while I slept. While I
was flattered, I still had to let him go. Relax, I rehired him because he is a
great caregiver even if he is a little bit creepy. I am laughing because he is
the one who is typing this. Anywho, being one caregiver down, poor little Grace
had to help out… for 4 hours. Boo Hoo. Grace protested. I exploded.
To make a long story short, Grace decided that this was the
perfect opportunity in her career to rebel. Gracie convinced her (part-time)
biological father, Dylan, that I was a lunatic and was, I think she cleverly
used the term “psychologically verbally abusing” her by calling her a “selfish
pig”… a la Alec Baldwin. I have no regrets, she was indeed, a selfish pig. This
is what I was talking about with my unorthodox parenting skills. Well, Gracie
didn’t take kindly to this criticism and decided to… convince her college
professors (and the dean of her school, for that matter) that she was “under
undue stress” and needed to excuse herself from the last month of the semester
and finish her projects “remotely” and fly to California “to recuperate.” While
I commend her for her initiative and manipulation skills, her actions are
wholly inexcusable on every level, especially the part where Gracie did not
tell me ANY OF THIS! Yes, you heard me correctly, I did not know about any of
this. However, Gracie’s father knew… he paid for her plane ticket. Gracie’s
aunt Heather knew… she called Gracie’s school to confirm Gracie’s request.
Gracie’s grandparents knew… they picked her up at the airport. David knew… he
ordered her an Uber to go the airport. My best friend, Jenny knew… she told
Gracie that Gracie could stay at her house in LA.
NEEDLESS TO SAY,
I FUCKING
EXPOLDED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
My whole world collapsed. While I was busy trying to
recuperate from the hellish previous 3 weeks at the palliative care center,
little did I know, Grace and her cohorts were busy scheming for Gracie’s
departure. Trust me, this took some planning. Without boring you with ugly
details, mark my words… the word “catastrophic” does not do the situation
justice.
The funny part and most rewarding part (for me) of this
whole ordeal is that Gracie’s father, aunt, grandparents, David and Jenny were
all used, unbeknownst to them, like pawns in Gracie’s federal prison like scheme.
Gracie led all of them to believe that the stress of my ALS was just too much
for her and that the stress of my ALS was affecting my “cognitive reasoning”
and therefore, poor little Gracie needed to escape. What these fools didn’t
know was that Gracie, in actuality, didn’t want to finish a 30-page school
research paper due at the end of May, that there happened to be a boy in Los
Angeles that Gracie wanted to see and she was craving an In-N-Out Burger. Of
course, this gaggle of morons was not privy to any of this because they were
under Gracie’s charming spell and because THEY ARE NOT HER
PARENT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
And by the way, my cognitive reasoning skills are in tip-top
shape… ask my doctor… and this is why I am fully aware of Gracie’s bullshit.
Oh, also, Gracie told everyone that I was a terrible mother because I wouldn’t
let her go to public school. Ask me if I care? By the way, this was the public
school that had an on-site daycare for the student’s babies!
Want to know my mental state after Gracie got on that
airplane leaving Paris and me? Cry me a river is an understatement. Furor and
revenge is more like it. I knew that I could get Grace back under control but
what was more upsetting to me was the betrayal of those whom I trusted to take
care of Grace in the likely event of my death. Here they were faced with
Gracie’s first indiscretion and they failed miserably. I mean, c’mon, who lets
a kid leave school before finals and go on vacation to LA leaving behind a
mother who is about to fucking die? Idiots, that’s who!
So, now, I can’t die peacefully as planned. Now I have to
stay alive to continue to raise Gracie because I don’t trust anyone else to do
the job up to my standards (except Yolanda and Diandra, of course). I even went
to my church and had to ask God to retract my request.
So, here I am, forcing myself, willing myself to stay alive.
Ask me how difficult this is? I’ll tell ya…
ALS is ravaging my body. I spend the entire day fighting
whatever it is that is trying to kill me. I have quadrupled the dosage of an
experimental “drug” that is supposed to block the toxin of ALS. I never did
this before because the safety has never been proven, but now I have nothing to
lose, so fire away. I take it 10 times a day. I shove in my feeding tube every
half hour the following: Kale, spinach, cucumber, fennel, coriander, coconut
water, coconut oil, carrots, green peas, whole grain brown rice, sprouted
quinoa, sweet potatoes, garlic, rosemary, ginger, lemon, flax seed oil,
turmeric, almond butter, beets, pomegranate, blueberries, celery, broccoli,
garbanzo beans, seaweed and every other healthy fucking thing I can think of.
Bored yet? Think how I feel… I do it every half hour. Every half hour! I do it
because I cannot die yet and let those incompetent Judases parent Gracie.
After 2 weeks of ranting and raving, I got Grace back to
Paris… we had some words… she apologized… I did not (because I do not negotiate with terrorists)… and we are back on track.
No, I do not forgive Gracie’s accessories in her crime… they can all fuck off
except David and Jenny who I forgave… just because.
Sorry for this lengthy explanation but remember, it is your
fault because you asked how I was doing.
So, where do we go from here?
I have decided that I will not leave this earth without
kicking and screaming, fighting tooth and nail no matter how ugly it gets, even
if I am on my last breath… I will not abandon my post… my daughter. This could
be a week or 3 months. The stages of ALS can vary. Isn’t that fun?
I am sure Gracie will be just thrilled. To reward Gracie
with her bad behavior I have decided to over-parent her even more than I
already do. I have secretly inserted a tracking device under her skin… just
kidding… no I’m not.
In the meantime, while I am trying to stay alive, I thought
we should make the best of it.
Let’s talk about adaptation… I have had to adapt to a lot.
Canes, walkers, wheelchairs, feeding tubes, handicapped toilets for fucks sake,
breathing machines, daily medication, caregivers and adaptation computer software.
I always told myself that I had my limits as well. I told myself that I would
never live past the point when I could not speak. What’s the point, really?
But here we are… I can barely speak but I need to! So what
are we going to do, my friends? I have to adapt, obviously. Enter Eye Tracking
Computer Software. Geeky and embarrassing, I know, but fuck, what else am I
going to do? Gracie needs her mother! I guess I should be grateful that eye
tracking software even exists but #ItSucks.
On top of having to need eye tracking software, now I have
to pay for it and it is expensive as fuck. If you want to know how expensive
ALS is, please refer to everyone’s favorite blog posting of mine titled, Dear
Fat Fuck, HERE. Leave it to me to get the most expensive disease on earth… 24
hour caregivers, breathing machines, imported feeding tube formula, medication
(FDA approved and non-approved), doctors that charge 150 euros per hour, kinesiologist,
massage therapist, daily nurses, and blah, blah, blah… I am so high maintenance
it’s revolting. Thanks to my best friend, Yolanda Hadid, who established a
donation page for me, HERE, I can afford some of the cost but it in no way
covers all the expenses of ALS. Thank you to all of you who have donated and
thank you to Yolanda.
Also, I want to thank all of you for your cards, gifts and
flowers. Remember when Gracie called you my “imaginary friends?” Well, that
same Gracie would rush over to my apartment and eagerly open every single one
of your cards and read your kind words to me. One day, my caregiver, Michael,
started to open the cards and Gracie protested, “Let me do it!” She loved it.
Imagine that!
I am grateful that Gracie and I recovered from #April2016. The
good news is that I know how to multi-task. I will continue to hover over
Gracie, I will learn to adapt to the eye tracking software, I will continue to
take pictures of the hot French guy outside my window and post it on Instagam
HERE, I will continue my blog, go to exhibits, try to stay alive, take illegal
medication, share my life with you… AND… I will reopen my shop!
You won’t believe this but little Gracie finally decided to
take an interest in my shop. She has been in training for almost 21 years and
has a trained eye that rivals the best of them. She can spot chinoiserie from a
mile away. She knows good gilt mirrors when she sees one and her computer
skills are magnifique! So Gracie is now my #1 Have Some Decorum Shop Girl. We
have put together a fantastic collection of antiques that will be available
next week!
As my friend Hollye says, “Look for the silver lining.” Even
though Gracie and I barely survived #April2016, we did come out of it with a
new understanding…
I am her mother and what I say… goes.
Thank you for asking how I have been doing. Are you disappointed
that you did? Didn’t expect all of this, did you? I am sure many of you, if not
all of you, have some sort of similar experience with your children as well. I
am laughing thinking of the comments that I will receive for this blog. I swear
to God, if any of you dare to tell me that Grace is just acting out of anger
because of my ALS, I will puke. She isn’t… she just didn’t want to do her
homework for the first time in her life.
THE END.
