My day today was in a sense both terrible and absolutely
incredible simultaneously. As with
much of my life, I had a hard time of discerning one from the other most of the
time. Today, I received my first full
eight-hour medical infusion. It was not
my first infusion, by a long shot, but it was definitely the longest so far. My day began at 5:45 am when I was woken to
the reminder that I had a long day ahead of me.
As I wiped the sleep from my eyes I reminded myself of what I had prepared
the night before to wear and as I dressed I thought to myself, “don’t bother
with makeup… it’s chemo after all! Who cares how you look?!” Immediately I reminded myself… I DO! So I sat down at my makeup chair and put on
an appropriately light application of makeup; not enough to look like I’m going
to the Oscars but enough to make myself feel human and even a little pretty.
On most days I walk, limp, crutch or roll into the Hospital
for Special Surgery with great confidence; but on this day, I was filled with
trepidation. We had tried this particular
drug and its associated cocktail of pre-meds just three weeks ago and the near
immediate result was a significant allergic reaction… not fun, and quite
upsetting. Since that time I had some
blood work done that showed that although I had only received 15% of my
medication that day it had had a significantly positive affect on my immune
system (ironically, “positive” in this case means that part of my immune system
is waaaay shut down.) This is not
terrific for me in terms of germs and possible infections, but it IS good news
in terms of keeping my illness at bay and lessening the damage that is being
done to my joints and a number of other organ systems. Therefore, due to the positive results we had
received already, my doctor felt that we should “re-challenge” my body to
another slower dose with more “pre-meds” to keep my eyes from swelling up like
ping pong balls. As I am sure you can
imagine the idea of a “re-challenge” was both exhilarating and utterly terrifying
all at the same time; and so as I entered the infusion unit I held my head
high, took a deep breath and put one foot in front of the other; because as I
have learned, many times in life that’s just the way it is. One foot in front of the other, one second at
a time and one deep breath to even it all out.
I walked in and smiled at all of my familiar faces, both
patients and nurses alike, and sat down in one of the infusion recliners. I made sure (OF COURSE!) to sit in a
completely different area than last time… hey, I’m no idiot… that other chair
had some baaaaad karma! J
So there I sat; I was in position with my father solidly by my side… things
were good to go! THAT is precisely when
things started to go down hill.
One of the nurses approached me with her IV kit in hand all
ready to go. As she looked me over
(complimenting my makeup -I might add J
) I looked her straight in the eye and asked “did you draw the short straw
today?” Not ever having tried to get an IV started on me she wasn’t quite sure
what I meant, but when it finally hit her she asked “well, did you bring your
veins today?” Apparently dear friends,
the answer to that question is an undeniable NO! After more than 20 sticks done by over 4
nurses things were becoming quite tense.
I felt bad for the nurses and the nurses felt bad for me. It was like we were one big Jewish family –
tons of guilt to go around (but I was conspicuously the only Jew in the bunch!)
Anyway, as the hands on the clocked continued to tick away,
nearly two hours of poking, pinching, warming, pumping, tightening and sticking
had passed and still we had not gained any IV access. Words like “jugular”, “admission” and “resident”
began to float around the room and I was none too pleased with THAT plan. I begged them to continue to try to find a
vein and try they did! Finally, after
over two hours and 20 sticks we all began to cheer (and I do mean ALL… the
patients, the doctors, the nurses and my father with me) as saline began to
sweetly drip from its plastic bag into my most cooperative vein!
During this two-hour ordeal the patients in my area all
became invested in the drama surrounding me; and in order to “lessen” my focus
on my pin cushion-like arms they started to discuss our common ailments. Phrases such as “poor baby” and “it’s not
fair, you are too young for all of this” became the day’s catch phrases. I assure you – this is NOT what I wanted to
hear. Women and men, double my age and
more, telling me how lucky they felt for not being diagnosed with this crappy
illness until they had already lived out the greater part of their lives. And there I sat, listening to them, their
words hurting far more than any needle ever could, but with intentions so pure
I just had to smile and take it.
As this barrage of sympathy continued to swirl around my
head I couldn’t help but feel sad for myself. A deep penetrating sadness stung straight
through my heart; and I let myself feel it… but only for a moment. For that one second in time my heart ached
with the sadness of all that I have lost and will continue to loose; for all of
the matches that have said “she’s broken” and for the children that I might
never have, for the knee that will soon be replaced with metal, cement and
plastic and for the joints in the future that I will continue to have replaced.
For the freedoms I have lost and for
the pain that I live with day in and day out.
For the struggles I have with G-d and for the pain my illness causes so
many others… I was sad. Deeply sad… and
I began realizing that THAT is just fine; but only because I didn’t let it
linger.
That very next moment I decided that my sadness was not in
control. It would not determine my self-worth
nor my destiny. I am in charge of how I
feel about myself and only G-d knows what I am destined for. As the nurses continued to poke and prod and
the patients surrounding me doused me in pity I decided it was time to change
my attitude. I had allowed the sadness
in, which was fine… but only for that moment.
The next moment had arrived, the other foot was in front of the other
and the clocked had ticked by another second.
I was now in that past second’s future and only I would determine how I
would feel about it.
You see, there is so much in life that I cannot
control. I cannot control my health to a
great degree nor can I determine how it will progress. I cannot decide which joint will fall apart
next or which vein will become occluded… what I COULD however control was my response
to it. With that in mind I looked
straight at the woman speaking to me about how “young I was for all of this”
and asked her what makeup she uses; and in that moment I took control. It was no longer about my disease, or my
surgeries or even the fact that I “must have it real bad because [my] doctor is
the head honcho.” No, in that moment it
was about MAC, Urban Decay and Christian Dior! Why? Because I made it so. I took control of that moment and the
feelings inside of me. I would not feel
bad for myself, nor would I allow them to feel badly for me. After all, I was the one being poked, and I
was the one wearing the makeup. Which of
those two topics we were going to discuss was MY decision to make; and so I
did!
After that, the tone in the room quickly changed. Once I had my IV going and the Benadryl was
aflowin’ they could have been speaking Chinese and I would have agreed with
everything they were saying, because quite frankly, I didn’t hear a word of it!
However, it was in that quiet dazed state that I thought again
about my sadness and decided that I had truly copped out. If I was truly OK with my sadness, I wouldn’t
have needed to change the subject. I
would have allowed myself to sit with it.
Feel it… for more than a second… maybe even a minute or two! I would have allowed myself to feel the pain
and be OK with it.
Talking about makeup doesn’t make being “broken” and single
any less painful. The thought of never
having children of my own, specifically BECAUSE I can’t find my match hurts
just that much more. Having parts of my
body, created by G-d Himself, only to be replaced with man made parts pains me
greatly. As for the freedoms I have lost
and the physical pains with which I live… well who wouldn’t be sad??? And as
for my struggles with G-d and the pain He has punished my family with through
me, well, there truly is no greater pain.
So there I sat, in my drug induced haze, pretending to watch a TV show
about (you guessed it…) makeup, when all of a sudden it hit me… it truly is OK
to be sad… and for as long as I choose, as long as I am actively choosing to do
so. I could be sad for more than just
one moment and more than just one minute.
I can be sad for an hour, a day or even a week… as long as I remember
that it is MY CHOICE to be sad or happy.
So, I continued to sit there… and sit there… and sit there,
with my sadness, my anger and my pain. I
chose for those 8 hours to be sad. It
was my choice and that is what I chose. My
father and I gathered my things, and as I exited the hospital I put one foot in
front of the other and decided, I am done being sad. Even if it is just for now… I choose to be
happy once again!
I thought to myself about all of my grievances and issues,
and tried with all my might to find just one spark of joy among them. To my great surprise, I found more than just
one… I found many.
Yes, my G-d given parts might be changing, but only by the
grace of G-d is there the technology to do so and ease my pain! The freedoms which I have lost do hurt, but I
have found new and wonderful ways of living, many of which I would never have
found without my lost “freedoms.” My
pain, no it does not make me happy, but I am blessed with some of the country’s
best physicians (if not the world’s), imagine how much worse off I could and
would be without them. Yes, my case
sparked the interest of the “head honcho” but where would I be without him??? And
of my struggles with G-d… well, you show me someone who doesn’t struggle with
G-d and I will show you someone who doesn’t believe that there is one with Whom
to struggle. How blessed am I to still
know that G-d IS, and that I am here only because He wills it to be so each and
every second. I do not know what He
expects of me, and yes, I sometimes feel that my lot has been unevenly
distributed to me… but I know deep inside that He has chosen this path for me…
and while I don’t stand among the great and righteous men and women who have
walked before me on this earth, I can’t think of even one who did not struggle
at some point.
Indeed, you will find that some of the points on my “sad
list” do not have an accompanying “happy list” thought. But that is what the test of being human is
all about. Living with the sad, recognizing
the good and always remembering, most importantly, that it is absolutely fine
to feel both; all the while though you and I must always remember, put one foot
in front of the other, take it one second at a time and always take a deep
breath to even it all out!
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