What does it feel like?
What does it mean? I could give
you Webster’s or Wikipedia or google’s definition. However, instead I will give you mine. With the way that I feel, my guess is that
you might see my picture next to the word invisible. Ouch, I’m being honest, huh?
Despite all of the precious love from each of you while I was in
the hospital, now that I’m out….
If you recall, I was in a coma; thus, I don’t recall each of your
visits. As a matter of fact, I have to
keep asking B who came to the hospital, who called, etc. Since I’ve been out of the hospital, out of a
coma, I don’t seem as valuable.
I can start the feelings at home.
Apparently, my little one cried for Mommy while gone, but now that I’m
here, nothing. Yes, she’ll occasionally
give me a hug and tell me she loves me, but it’s when she wants to, not when I
ask her to do something. You’d think I
wasn’t speaking at all. Yes, my voice is
still hoarse. However, she has acted
this way when I have a voice, too. The
assumption is that she looks forward to family time because she gets excited
when we talk about it, plan for it, etc.
However, the other night in the car, we’re all about to start singing a
song together that is super fun and she asks me to stop so that she can sing by
herself. Ouch! To most that might not hurt; however, when
you don’t feel like you get to be a Mommy anyway, each chance matters. This was an opportunity for us to share a
special song about being a light to a dark world, yet I was asked to not
participate. So, yes, the tears were
flowing…my daughter didn’t want a Mommy…was my interpretation.
So, as you might guess, my view is through a different set of lenses
than most of the world might look through or maybe I’m just being extra
vulnerable by sharing. My lenses are
that of a grown woman that used to have a job that “required” her to be out
talking to people and driving all over Tx all day long. I was constantly surrounded by people. I felt important. When I walked in a room, people noticed. I was respected by healthcare professionals. Now, I am stuck in the house most every
day. Sitting behind a computer that can
cause seizures since reading & writing are both triggers for my
seizures. I would love to sit &
write thank you’s to those of you that have gone above and beyond, yet it
typically brings about seizures. Thus, there’s
one more way of reaching out into the world that is removed. Healthcare professionals see me as the
patient, not the one coming with info.
Thus, I am asked to be quiet.
Though we have learned so much through this journey, they don’t care to
listen to me. They will listen to my
man, but not me.
I’ve not had the opportunity to drive in nine plus years. Just to realize that I need something and
quickly run to the store. It doesn’t get
to happen. To know that my 20 yr reunion
is coming up and I’d love to go find an outfit to wear since I’ve not been
shopping for clothes in quite a few years, but I have to ask for a ride and
then ask someone to wait while I try stuff on or only have a few minutes to
look because they need to be somewhere else as they are doing me a favor by
taking me. Even to take my kiddo to
school. She prays this almost each
night, that God “will heal Mommy so that she can take me to school.” Ouch.
Okay, so I’ll clean the house if I’m home all day, right? Well, first, physical activity is a big
trigger. That being the reason that
when in public I’m typically in the wheelchair or a motorized scooter at the
grocery store. I love the lines left in
the carpet that vacuuming makes. So, it
would bring me so much joy to get to vacuum all day long (okay, I might
eventually get sick of it). However,
that is a bunch of physical activity & it’s a lot of noise. Many sounds are triggers for my
seizures. For example, the blinker in
the car can be a trigger. If music is
too loud or at the Friday night football games when they sound the train horn
or whatever that loud noise is, I have to plug my ears, or else. Books on tape/audio books, that would be
fun. However, there is something about
the octave that has been a trigger for many years each time that I’ve tried.
Even at church…we have an amazing church family! However, we sit where we do because of the
sounds. Too close to the speakers and we
have seizures. Too close to the
instruments and we have seizures. Too
far away and I don’t feel like I’m a part of the service. Also, there is a lady that has always had a
tambourine, but she sits on the other side of the sanctuary. So, we’ve been in the same spot for about six
years. For some reason, the last three
weeks, she has come over to the other side of the sanctuary and I have to leave
during worship due to the pain it causes.
The first week, I just stood in the hallway during worship as I don’t
want to interfere with her worship either.
Last week, one of the pastor’s wives saw me in the hallway and asked
what was going on and went in and shared with the lady & asked her to
stop. We were at the last worship song
by the time all of this happened. So, I
made it back in for one song. Today, she
started banging it and I rushed out. Ben
got one of the ushers to ask her to stop.
Instead, they moved her to the balcony.
So, I came back in…then, it started again, so I had to rush back
out. If you’ve been around me much
lately, you know that me and rushing don’t work well together as I am typically
shaking, out of breath, and completely exhausted, and likely to have a seizure
after rushing. Turns out there were two
ladies today with tambourines. Thus, I
was outside in tears most of the morning.
Back to cleaning the house as this would be fun and there would be
a sense of accomplishment. Most of the
chemicals that we would use to clean with, even the more natural ones, when
touched, breathed in, etc., can trigger seizures. Thus, if our house gets clean, that is on B’s
shoulders and I can’t be in the house.
So, there’s one more thing I can’t do and one more thing that I have to
add to his plate. I can do laundry,
though. So, there is my outlet a couple
of times a week. However, once I unload
the dryer, the standing to hang items, fold sheets, etc., requires help. Or, I’m just too exhausted from walking from
the bedroom to the laundry room, unloading the dryer, switching the clothes
from the wash to the dryer to be able to complete the task. Thus, much of the laundry remains laid out on
the table, needing to be folded or hung.
This is frustrating as I was raised to finish what you start.
Another example is in public, namely the grocery store. It is amazing how many people seem to think
that the motorized carts have their own lane and we should get over the fact
that they are shopping on the same aisle.
First, most stores do not make their aisles wide enough for the carts to
turn easily. So, if there is someone on
the aisle that I’m trying to turn on, I have to wait until they’ve moved completely
out of the way. Second, they aren’t as
easy to maneuver as one might guess.
Putting it in reverse, causes a beeping that hurts so badly and typically
triggers a seizure. Thus, forward is the
only direction that I can go…It’s amazing how many people that are up and
walking with their cart seem to guess that I would prefer to move out of their
way in the big motorized piece of equipment rather than them taking two steps
backward with their cart so that I can make it past them.
It is truly amazing the dirty looks that I get when coming down
the aisles. As if I have chosen to be in
the motorized cart to inconvenience them.
Do they really think that I would intentionally ride in one of those
carts and try to get in their way? It
sure seems that way.
Let’s try Miss P’s dance class.
When we get there and I’m on the walker, the Mom’s like to remain
standing or sitting where they are. The
fact that there is a woman trying to walk through with a walker doesn’t seem to
faze them. Many will actually turn
around and turn their back to me. Thus, my
feeling invisible. Just because you
turned your back to me doesn’t mean that I didn’t see you. It hurts.
Then, needing a place to sit while there. I’ve actually had to go out to the car a few
times because no one will share some space on a bench. B can stand in there & he will give up
his seat for anyone. However, if I’m not
there early enough to claim it, I have to sit outside in the car.
To live in a community that we’ve been in for 30+ years, it hurts
to be in town and see people intentionally turn their back so that they don’t
have to look at me, acknowledge me, etc.
Jesus said to them, “A prophet
is not without honor except in his hometown and among his own relatives
and in his own household.” Mark 6:4 (NASB)
Please trust that I’m not referring to myself as a prophet by any
means. Just trying to comfort myself
that even Jesus felt rejection in His hometown.
Am I saying that our hometown isn’t amazing? Not at all.
There are so many wonderful people.
Many that have shown tons of love.
Yet, there are also many tough days.
When at the grocery store, at P’s dance class, etc., it hurts to see
people that we know and that know our struggle, yet they still turn the other
way. Or, when people ask us to let them
know what they can do to help. I finally
build up the courage to ask them for a quick ride to the grocery store and they’re
too busy!!
Maybe many of you feel this way, you just don’t share it. Maybe I’m the only one. If so, sorry for taking up your time. If you do ever feel this way, know that you
are not alone, both physically and spiritually!!
Joshua 1:9, “This is my command —
be strong and courageous! Do not be afraid or discouraged. For the LORD your
God is with you wherever you go.” (NLT)
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