It happened again. Just as I was starting to
recover—ready to grasp a bright spot—I make more mistakes and go back to
where I started.
Stuck in this cycle of slight
improvement, push just a little too hard, then end up back at the beginning. Trying to reclaim that moment of improvement. Over and
over.
I push you body to exercise when you can’t. I make you
walk when paralysis has overtaken your limbs. I have treated you as the enemy
for years when we were always a team. Always.
Sometimes I just get so tired, so frustrated, so
angry at the ever-increasing limitations. So tired of being
shackled under the weight of illness. Then I over-step, ask for too much, push too hard.
I ask for forgiveness.
I tried to have fun with my nephew a few days ago. I tried to play for just a few minutes.
But you can’t do that
anymore. That's no longer within the parameters of your abilities.
I was bedridden for hours and couldn’t walk the
next day. I have struggled to leave my bed and couch since. I don’t want my nephews, my family, my friends to remember me as a
lump on the couch—someone who asks others what they’re doing, who listens to
other people’s dreams and aspirations, who rarely leaves the circumference of a
room. I don’t want this.
So I push myself too hard every day. I ask too much every day.
When I rail against my fate and make questionable
decisions in protest of illness, you remind me that my limitations are serious.
The consequences are real. My breath leaves, my limbs no longer move, any hope
of verticality is dashed. Crash so hard and so deep that swimming to surface is impossible.
Only rest. I rest in penance.
I ask that we try again. One more time. I’ll listen
to what you tell me. I’ll ask no more than you can give. I’ll treat my
limitations as sacred.
Because when we’re a team, we can do great things.
You give me energy to play music—to get lost
in a melody for a short time, to improvise and roam in the geometry of sound.
It is in those moments that I am truly free.
You give me enough energy to go outside sometimes
and walk a few feet or look at the flowers growing in my yard. In those
moments, I feel like I’m a member of the world again.
So we start over, start the cycle again, and maybe
this time I learn from my past mistakes and press forward enlightened and wiser.
What a week of ups and downs! I wrote last week that
I was finally having an ok week after months of hanging on by a thread and
struggling to move, eat, and function. This week hasn’t been as good as last week but good enough for sure.
-I mentioned last week that we were going to drive
to Stanford for my brain MRI this week. It didn’t happen. I rescheduled it for
a variety of reason, but mainly because I didn’t want to jeopardize finally feeling a little better physically. Our last trip there in November wiped me out
for weeks. Then the festivities of December wiped me out so I just could never catch up.
I haven't met my exercise goals in months. Yet, I feel like I’m making a bit of a turn around finally and I wanted to
capitalize on that and get back to exercising. It was probably the
wrong choice to not show up, but I really needed some time. Also, I have a few local appointments next
week I must show up to and a trip to Stanford could risk not being able
to show up. My husband and I were so relieved not to have to make the trek
there this week and stay the night. I was able to get out and walk instead!
- I see my GI doctor next week for the first time in
a year and a half. I need to talk to him about the intestinal infection, constant pain and nausea,
struggling to eat, and not being able to put weight back on. But really I’m
going to tell him, “eating food is important and everything but what do I need
to do to be able to eat Girl Scout cookies when they come in a few weeks?” That is priority #1.
-My next article, "Why the Fight for a Diagnosis Matters," at The Mighty is up and you can read it here. I wrote about the battle of living on the Hamster Wheel of
Diagnosis and why the fight to finally get a diagnosis matters despite the
exhaustion and invalidation that can come with it. Most people do not know that
the typical time to diagnosis can be six or more years.
Most people don’t know that being told “it’s all in your head” by countless
doctors is an almost universal experience for people with Dysautonomia and other invisible illnesses. That’s
what I was trying to give voice to in this article (and on this blog).
-There was a controversy recently over at The Mighty and some disabled writers have decided to no longer write for them, which I think is a great loss. You can read a bit about it here and you can follow the #CrippingTheMighty hashtag on Twitter to read more responses. I think overall the comments were justified, it started good dialogue between the writers and editors, and The Mighty has made some changes in light of what happened. I decided to keep submitting writing to them because I think it is still a good resource for voices who discuss disability and illness.
- I celebrated not having to drive to Stanford by
finally getting my flu shot. Excitement! Husband works at Costco so he worked all morning,
came home and picked me up, and then we drove back over there (that dude is amazing). He got to show
me what he has been working on recently and I got to sit on the couches they have. I
love couch season at Costco. It’s a nice way to remain in my natural habitat
outside of home.
-I haven’t discussed this much on the blog, but I’ve
been fighting a very exhausting, protracted battle with the insurance company over
my disability insurance. As a public educator, we had to pay into a private
system. They awarded me a few months of short-term disability at the end of
2014 but denied my long-term disability and the last few months of my short-term disability. I
have not received any benefits since January 2015. I’ve sent them over 100 pages
of medical documentation, including letters from my doctors, but they determined
that I was not “technically disabled” and am able to do all of the “extensive
walking and standing” required for teaching. You could almost laugh at these words.
I have
appealed multiple times. My long-term disability case was a lost cause. That part
is officially over. But I’ve been trying to find a lawyer to help with my last
appeal for my short-term because I have no chance of winning without legal
help. Finding a lawyer who will take a private disability case is nearly
impossible. So few of them will. Many of my conversations with local law
offices went like this:
Me:
“Hi. I was wondering if your law office takes private disability cases?
Them:
“No” *click*
Me: "Well have a good a day anyway!"
A law office in San Francisco considered my case but months later decided not to take it. I then found a law office in Texas that considered
taking my case. They were incredibly kind and easy to deal with and contacted
me every week to keep me updated. A few days ago they informed me they
ultimately were not going to take my case. I was given six months by the insurance company to appeal the decision but being ill, my mother passing away, and the struggle to find a lawyer
ate up all of that time.
I submitted a one letter appeal this week one day before the deadline
for my very last appeal. I’m trying to decide if it’s worth trying to find another, third lawyer. I’ve been
dealing with this since I stopped working in August 2014 and this battle has
caused tremendous stress for me. I've wasted so much valuable energy on this. This is the thing with the American for-profit
insurance system: the sicker you are, the more benefits you need. It is a constant fight with insurance
companies to get benefits and access to care. It is the job of insurance companies
to maintain profits and deny benefits to protect profitability. It’s not
personal. That is just how the system works.
I long for this particular battle to finally be
over with. I’m going to try to apply for state disability next, but
I will likely be ineligible since I never paid into social security as a public educator. That’s the
next battle. The prospect may be that not only can I not work but I cannot even get disability
payments to help support my medical costs at the very least. This entire process has broken my spirit a bit. It has definitely
had a physical cost. And I’m not alone. The struggle to get access to benefits
and care is a struggle for many with chronic conditions.
I should've put a handful of glitter in the envelope when I mailed my last appeal. That would've felt like sweet justice.
-Husband and I left the house to go to the thrift
store around the corner yesterday. Thrifting has been one of my
favorite activities since I was in high school, and it was so great to get out. Oh, the benefits of doing a little better! This particular store is not very accessible and is really difficult to
navigate in my wheelchair but I still like to go when I can. We only stay for a
few minutes usually before I start to crash but I’ve gotten really good at
making a quick of survey of everything to find some treasures before we go.
-My sister-in-law and baby nephew stopped by for a visit a few days ago. Look at all of this handsome.
-My daffodils I bought with my mom a few years ago have already started to sprout. I can't wait to see them bloom. They are my favorite flower.
-What terrible news this week that we lost two
brilliant souls, Alan Rickman and David Bowie. We watched Labyrinth and one of
the Harry Potter movies this week. I have the Harry Potter movies memorized because I’m
an unabashed Potter obsessive but it’s always great when husband wants to watch
one with me. Rickman steals the show in all of the films and played Snape, the most complex character in the series, brilliantly. What a loss of a great talent.
How do you choose a favorite David Bowie song? It’s
so difficult. But this one from Labyrinth has been one of my favorites forever
and I learned it years ago. Sadly, I never performed it. It's such a gorgeous song.
