My niece will be born today. She is the first of her
generation in our relatively small family. And we are all thrilled beyond
words. As soon as we get the news that she has arrived, my husband and I will
meet the rest of our family at the hospital, and we look forward to showering
my brother and my sister-in-law and their new precious bundle with lots of love
and affection.
As happy as I am on this occasion, I am reminded of
something my therapist said to me around this time last year when I was going
through a rough period. She said that it is possible to feel two seemingly
conflicting emotions at the same time; gratitude and sadness are not mutually
exclusive. Perhaps this isn’t the most profound wisdom ever spoken, but it was
what I needed to hear then and it is what I cling to now.
Let’s rewind a bit to yesterday evening. I went to our local
grocery store with my mom to pick up the ingredients for my husband’s chocolate
peanut butter ooey gooey butter cake (his request for his birthday dessert this
year). If I am not ordering my groceries online through Walmart’s free pickup
service, which might be the best thing to enter my life so far in
2016, then my mom is the one taking me for short bouts to our local grocer.
Even though I have been doing a little better with walking lately and staying
upright through most excursions, something told me yesterday that I needed to
use the electronic scooter for this trip, as it has been necessary so many
times in the past. It turned out to be a good choice, as less than halfway
through our trip I got that familiar glassy-eyed look and found myself
struggling to keep it together. My face began to droop a little on the right
side; my speech slowed and slurred; and my behavior became childish and
erratic. I felt myself going in and out of awareness, fighting hard to reserve
a semblance of togetherness as we navigated the last few aisles and the
checkout line. My vague recollection of the checkout line includes me in my
sunglasses, the cashier and another gentleman being somewhat afraid I’d run
them over with my scooter, and everyone around me talking in those hushed,
comforting tones that one uses to calm a small child.
This was far from my worst presyncopal migraine episode. And
yet when the hangover effect of this particular encounter wore off, as it only
recently has, I was left with the sobering reminder that I am not better. In
fact, I am still really far from where I want to be. During the good hours (I
call them that, as I feel that with chronic illness it’s pretty darn rare to
have a completely good day), it’s easy to forget that I am this sick. I can’t
explain this phenomena. You would think that someone who has looked illness in
the eye for over 20 years would really start to wear that identity like a badge.
But the truth is that I do my best to rip off that badge whenever I am able. I
used to think I did this because I am an optimistic person, but I now think it
has more to do with survival than optimism. I can’t get out of bed if I allow
myself to think that every day is going to be as painful as the last. So I let
myself forget at times or, more accurately, I push it to the back of my mind
and put different, happier thoughts at the forefront.
For as long as I can remember, I’ve wanted to be a mother.
As a child I didn’t spend too much time dreaming of a fairytale wedding or my own
prince charming husband. Although I had wildly varying ambitions when it came
to career options (why couldn’t I be a veterinarian, an acclaimed author and
open my own restaurant all at the same time?), what I thought about most was
how I looked forward to one day spending Christmas Eve wrapping up gifts from
Santa for my children who would eagerly devour them next morning. And how I’d
teach my little girl to whip up a perfect chocolate cake and to not settle for
less than she deserved in love, in friendship, and in the workplace. I’d
encourage my son when he tried to ride a bike for the first time and cheer him
on during his first soccer game, or music recital or simply when he beat
another level in Super Mario Brothers. It never occurred to me that being a
mother wasn’t guaranteed. Occasionally as a young girl at Sunday school, I’d be
encouraged to pray to God about the plans and hopes I had for the future. I’d pray
for my future husband, and that my parents would remain in good health, and
that I’d always stay best friends with Nancy. And I’d pray that I could help
all the animals He had ever created, but I don’t recall ever praying about
motherhood. It always seemed like a given, so much so that even now I have a
difficult time imagining my future without that being at the center.
They say that when you are diagnosed with a chronic illness,
it is not uncommon to go through a grieving process in which you mourn the loss
of your old self. I think there is truth to this, but my experience has been
that this process never really ends. Maybe some people reach a level of lasting
acceptance where they are finally at peace with their life as it is now, but I
don’t think that’s the case for most of us. Over the years, there have been
plenty of times where I have let go of the anger and the bargaining and reached
a place where I am, if not joyful, at least content in my present circumstance.
But then a friend will get a job promotion and I’ll be reminded of how long it
has been since I’ve been disabled and unable to work. Or I’ll see photos of
place I’d love to visit in Europe but can’t because of the numerous hills and
cobblestone streets that, while lovely, would be a nightmare for anyone in a
wheelchair. Or I’ll dream of taking a cross country road trip and be reminded that I often get
car sick and that asking my husband to do all of the driving from North
Carolina to California because I can’t anymore wouldn’t really be fair. It’s
not always an outside source that starts the cycle of grief over; most of the
time it is trips like this to the grocery store or the aftermath of taking a
simple shower, little ways my body reminds me of my own frailty.
The last few years have quite often found me stuck in the
anger stage of grief. I attribute most of that to my stupid little biological
clock that seems to be forever nagging me to have children now that I’m well
into my thirties. The truth is that I’m heartbroken that I won’t be a mother
and that I’ve unintentionally denied my amazing husband the opportunity to be a
dad. If I think about it too much, my chest begins to tighten and I start to
feel like I can’t breathe. Well-meaning friends and family remind me that women
are having healthy children well into their forties now and that I should not
give up hope. And, while I appreciate the sentiment, I can’t help but think
that if these individuals spent any significant amount of time with me, they
would realize that I am unable to care for myself, let alone another human
being. As much as I’d like it to be otherwise, unfortunately, my track record
for improvement isn’t a very good one. I am not looking for anyone to fix my
situation or to offer words of hope or wisdom. At the end of the day, I think I just need my friends and family to
acknowledge that this is really hard.
I never imagined that 22 years after first exhibiting symptoms
of chronic illness, I would feel like I was stuck in the same spot. Still
grieving. Still learning. I’d like to tell those who are struggling, like
myself, that it’s okay if you never get to a place of complete acceptance. And
it’s okay if you thought you were at peace only to find yourself sad and upset
again because of all the ways your body continues to fail you. You can take all
the time you need to grieve for the dreams you’ve had to alter or give up.
Finding a place of contentment is not a race with a finish line that you have
to reach within a certain time frame. And being sad about your limitations does
not mean that you are ungrateful for all of the good things in your life. Nor
does it make you less of a fighter.
I will go to the hospital today, and I will hold my niece
and give her all the love I have to give. I will tell her about all the plans
and dreams I have for us. I’ll tell her how when she is a little older I will
teach her how to care for kittens, and how I look forward to someday walking
through the backyard together where I’ll point out the metal owl that her
grandmother gave me, which is now nailed to my favorite tree. And I will be so
happy, and I’ll be a little sad, too. And that’s okay.
