It has taught me life lessons that God had been trying to teach me for many years and I wasn’t getting it. For instance, before I got sick, I wanted to be a powerhouse, dignified, kick ass, business woman. I was going to teach people with disabilities just long enough to get a feel of the educational system then move on to researching autism in the neuroscience field then go on to change legislation, education blah blah blah.
I wasn’t going to be a mom, I wasn’t going to stop and smell the roses, and I cared more about being known a bad ass then the people I actually helped.
I took everything for granted, thought homeless people were uneducated because they didn’t care enough to pick up a book, jobless, because they were lazy, and homeless because they couldn’t balance a checkbook.
Don’t get me started on healthcare I was ignorant as …well.. I’ll keep it clean.
I thought minorities needed to get over their fathers past and move onto the present and that if they weren’t getting what we so called privilege white people were getting it was their own fault in some way or another.
Fat people were lazy and didn’t take care of themselves. People with drug and alcohol problems lacked control. On and on and on.
I thought me and my fine brain with my superior, Mensa level IQ meant many people around me were simple, not worth my time. Belittling people to their face with a side handed shady
compliments were a pastime of mine.
I was fake, like many people I grew up around in St. George, I thought that behavior was normal. I didn’t know what it was to be completely genuine. And loyalty was expected of my friends but if I was unloyal, well, there must have been a good reason.
I was a horrible, horrible, person.
I don’t think god gave me this illness, I don’t believe that’s how it works, it’s the luck of the genetic roulette, however I do believe God does step in when he can and helps things along. He didn’t step in and help my family and I find the right diagnosis, or medicine sooner because I needed to go through hell. I needed for people to take my ego and rip it to shreds. To help me understand the realities of this world. I needed doctors to claim I had Munchausen’s and not believe the very real pain was experiencing so that later in life when someone came to me and said, “I am hurting, I’ve been through hell.” I would understand the importance of believing them. I needed night after night, day after day of excruciating pain to humble and heal the horrible prejudices that were inside my soul. I needed to have to wear diapers, pee my pants and all over floors in front of total strangers so that I could learn humility and not care what people think. I needed my heart to stop over and over and over again so that I could get chance after chance to visit the other side and be thought the things I learned over there. I needed it to happen so frequently so that I wouldn’t confuse those moments with the other moments of DHT release. I needed to know what it was like to experience odd hallucinations and memory loss so that I would be able to understand what it was like for some many people I now work with today, from schizophrenics, to people with dementia. And I need my bad days, like I have had this past week where I am holding on with every ounce of self control not to burst into tears because of the pain so that all this comes back and I am reminded how much better I am because of this illness.
I now know being a mother and caregiver to another human is more important than any other carreer or political appointment. I now know better then to walk into someplace I volunteer and think that I have something to offer them that’s more important than what they will teach me, and I have abandoned the arrogance that would have clouded my ability to do that.
I don’t take anything for granted. I realize if it wasn’t for my dad’s hard work, and our good luck that my butt would be out on the streets.
I now realize I was a bigot, prejudice beyond belief and a borderline racist. I was so blind to my white privilege it makes me ache inside. How can anyone be so clueless?
I now believe people battling weight problems and addiction are some of the strongest people on earth. Every day they don’t reach for that poison that will ease their pain is a small miracle. And a waist size has nothing to do with how active or physically strong a person is.
My IQ dropped two standard deviations, and then according to my last test went back up a little. That was the biggest humbling experience ever. My words don’t come freely, they are trapped in my mind and I can’t get them to their mouth, like a prisoner I am trying to free them and organize my many thoughts so that I can learn more to further help others. It’s exhausting and taxing. Those that can find ways to progress and grow around those barriers are the true genius.
My family and friends taught me true loyalty. I’ve met people along the way who have taught me how to be truly genuine and the blessing that comes when you are truly one hundred percent yourself every moment of every day.
I am now a good, strong person.
And it’s all thanks to my illness and God waiting until I was ready to heal myself.
So, if in this moment you are struggling, for whatever reason stop and think, what am I supposed to be getting? I'm not progressing because...and if you can't come up with the answer pray for it. Become vigilant in not yourself, but what is around you, the answer is there, waiting to smack you in the face. Make sure your paying attention or else you will miss a great lesson and chance to become greater.
So there is a story
going around you have probably seen about a woman named Brittney who has chosen
to take advantage of the death with dignity law. There is also a beautiful
letter written by another woman who is begging Britney not to commit
"suicide." It's prompted me to just say this:
The beauty life on
earth brings to the spirit mind and body together as one, is one that if it
were to be described as an action, I would compare it to that of the
combination of the force of fission and fusion. Similarly, when the mind body
and spirit begin to separate it is one of the most humbling, spiritually
revitalizing experiences one could have.
The way life, colors,
light and emotions were once perceived seem nothing less then stunted. You look
back on life and realize you've been living in the first ten min of the black
and white sequence of the Wizard of OZ. The every day life you once lived, now
seems so silly, dark, and broken. I miss those times I lived in-between the
light and was able to witness the colors and emotions with the greatest
intensity of vibrations that one could imagine.
I miss being bathed
in music the way one feels standing beneath a waterfall. I miss knowing, and
understanding things and having that knowledge feel like a nice warm blanket
next to a winters fire. But most of all I miss the love and freedom from pain.
I guess that's why I sympathize with Miss Britney, loving the thought that she
doesn't have to suffer the pain and confusion that comes before the light bends.
And as Kara points out there is something beautiful that comes before death
within the grace of our Heavenly Father.
I don't know which
one is right, all I know is this: when it comes to that time in your life,
whether you have warning or not, don't drown in fear. Release yourself into the
arms of His love. How do you do that? Pray, and ask. The calm and peace that
will eventually come over you, maybe not at first, but eventually, will be the
most beautiful, breathtaking experience you will ever have. Every strong
emotion, every oz of love you have ever felt will be rolled up into one big
overflowing blanket of peace, heavens love will surround you, then you'll see
the colors, and the light will bend. After that I do not know, but I do know
it's nothing short of glorious.
There’s another angel on
the streets of heaven tonight, a little man who I knew from volunteering at Muscular
Dystrophy camp. Tonight on facebook I’m
seeing many sad notes to our little guy, all sent with love and hope and condolences
for his family.
The lingering clock over
our heads is the hardest part of having a chronic illness. It’s something that
every human has but we are more aware of it because we don’t have the pleasure
of taking each day for granted. We don’t have to wait until an unexpected death
of a loved one or a tragic act of terrorism to happen for us to realize this
life is fragile. Our timer could erupt at any given moment.
This is a curse and a
blessing.
A curse because for some
you know you won’t live long enough to see certain events happen in your loved
ones lives; graduation, marriage, becoming grandparents, anniversaries. And because
of this you subconsciously or sometimes consciously distance yourself from
others. You become one of those dooms day preppers getting your things in
order, just in case.
I don’t know how to help
you stop the worry and fear, but stop .
When my niece was born I was at my worst. This beautiful bundle of wide eyes and smiles was now
in my life and I hadn’t loved anything that much ever. She would stare at me with her great big eyes
while she held onto my thumb and never looked away. I felt like her spirit
was somehow talking to my soul and I would often find myself weeping.
Weeping because I was so
grateful god saved my life all those many times my heart had stopped, thankful
that I now had my pacemaker so I could have this moment with my ray of
sunshine.
But I was also terrified.
Terrified that every visit would be my last, because my body would give out or because
I wouldn't be able to handle the pain anymore and I’d have to give up.
Those moments that
should have been filled with happiness and peace were filled with frustration
and anger and worry because I didn’t know if I was going to get to be with her
long enough to see her grow into the sweet angel she now is.
It was a waste, I didn’t
need to worry. And even if my time was to come and I wasn’t to see her grow
here on earth I would still be angry I spent those moments with her with those
feelings eating at me inside instead of just letting myself get lost in the
beauty of her soul.
Plan if you need to, but
don’t let those moments take over your life. Let yourself feel the fullness of
love from the world and people around you.
when it is your time to go you don't want to associate those sweet memories with your worries, you want to be able to take your bow and know without a doubt you loved, lived and laughed more then you ever feared.
I have a lot to be thankful for today. I’ve been on new
medication since my diagnosis of episodic ataxia and it has been nothing but life
changing. A literal fog has been lifted and everything is so clear again. I’m
more active, I can stand longer, play harder, and be myself again. I had almost
forgotten what that was like. This illness has been hard but it is also the
biggest blessing I have had in my life. Without it I wouldn’t have been as
compassionate, or understanding. I would have been arrogant, and felt little
need to reach out to others for help. Before, I was too independent, to
selfish, to close minded to understand what the important things in life really
are.
This illness may have crippled my body at times but it has freed
my soul.
I know what love is, what a true friend is and how to never
take that for granted. I will now go to the ends of the earth before losing
someone important.
I now understand that time is just a limit we humans place
upon ourselves and although we should never take any second for granted, we
shouldn’t be frustrated or rush those things that may need to take a little
more time.
I have learned that family does not mean blood or family trees.
I have cousins and friends, who are more like sisters, mentors who have become
like uncles and parents who have become more like soul mates.
Last but not least I have learned what Gods eternal love
feels like and how it can change a person. Growing up I thought there were more
limits, if I was “sinful” or hanging out with others who “were a bad influence”
he would slowly creep out of my life until I couldn’t feel him anymore. It has
become the exact opposite. As I have embraced those who don’t live the way most
deem appropriate, and ceased with judging others his love has radiated
throughout my life. I am never alone on a bad night when my body is twisting
and my head throbbing. I am not alone when I’m trying to push through the pain
when I am with others and hiding how badly I really hurt. I am not alone when
my mind is gone and I can’t remember simple things like the name of my dog or
how to open a door. I am not alone when I find myself somewhere and I’m not
sure where I’m at or how I got there.
Some may say why do bad things happen to good people. I’ve
decided God doesn’t have control of the dice like we think he does. Sure, if he
wanted he could change the outcome but then he’d be interfering with the laws
of nature and free will. And as a God of science he just can’t do that, unless absolutely
necessary. However he will hold our hands give us the tools and send us the
people needed to get through those times.
My illness is a blessing, a nascence sure, but a blessing
none the less. If I were to say anything
else I’d be kidding myself.
Long story short, this is how I’ve stayed sane, healthy, and
am coping with copious amounts of pain.
1.First I’ve memorized this poem/saying and say it to myself a
hundred times a day:
“God grant me the serenity to accept the thing I cannot
change, the courage to change the things I can and the wisdom to know the
difference.”
2. I stretch every single day, no matter what. Whether you feel like crap, or your body is
going to break; or you have twenty places to be at one time. First things first. You
stop, and get your stretch on. Stretching for people with Dysautonomia, MS, Parkinson’s,
or people who just get leg cramps is extremely important. I can tell a huge
difference between my days I stretch and those I don’t. I stretch consistently throughout
the day. In the morning when I first wake up I go through each position. Then throughout
the day when I get a moment to myself I do quick little stretches as much as
possible. My main stretches all come
from this fabulous book called (bellow)
Stretching and Toning by Melissa Cosby
I love it because it’s spiral so it lays flat. It has instructions
for several fitness levels so if my legs just won’t move like they should one
day I can revert back to beginners and on my good days I can go to Advanced. I’m
forgetful and ADD so I love that it goes into detail for each stretch but then
in the back there’s a page that sums them all up. This way you can go back and
make sure you haven’t forgotten how to do the stretches correctly and make sure
you haven’t formed bad habits.
3.Exercise daily, no matter what. I see those eyes rolling. I know this is a hard one but here’s the thing. Even people with the most limited movements can find an exercise
for them. For years I was told not to exercise because I would pass out. Then I
was told to do it for three min at a time. And here’s what I’ve found. There’s
this hilarious old lady that comes on PBS every morning at 9:00. She sits in
her chair and exercises. Sure you feel dumber then a playboy playmate at a Mensa
conference but it does the trick. Also I have this awesome machine. It’s like a
bike but you can stay on your couch and pedal, and then you can lift it up on
your table and work on your arms. It’s fantastic.
I found mine at Walmart.com
4. I’m now a yogi. I do Yin Yoga almost daily. I should do it
every day several times a day, but I don’t.
Don’t give me that look! I know it may sound crazy but if you really
give into it and your body can heal itself between bad days. It’s amazing! Plus
for the hours right after each session you’ll be standing up straighter then
the Eiffel tower! Here are my favorite videos:
Yes I know they seem stoned...but doesn't that make it more fun?!
5. Learn to meditate. There are hundreds of methods out there,
find one that’s right for you. I have a few favorites look HERE
6. On your bad days get out of bed! Even if you can’t move,
your joints are killing you, and each vertebra of your spine screams out in a
pop as you move upward. You got to continue to move your location. For
instance, in the morning, move from your bed, to the couch. If you need to keep
your favorite pillow and blanket, but just make sure you get out of bed. Then a
few hours later move from the upstairs tv room, to the family room. It’s
amazing how much better you’ll feel on those bad days if you push yourself to
change your surroundings even if it is just from one room to another.
7. Try to get your mind off your pain while excersizing and
getting ready. The reason why it is so hard to be motivated in the morning is
you are dreading that pain. So instead of watching your favorite tv show while
on your butt at night. TVo it or watch it on hulu as you are getting ready for
the day and doing your stretches. I always have whatever show I love on while I
stretch and I watch my horrible guilty pleasure, TMZ (you can get the episodes
on their website) while I do my hair/makeup/and get dressed. It distracts me
from how much it hurts to do those tasks.
8. Find your outlet. You have to find things you can do every
day besides watching tv, no matter how you are feeling. Make sure these are
things you love to do and make you happy. Here are some of mine:
My music. It’s amazing how much music can uplift you and get
you motivated. On days I don’t think I can do my stretches or go on a walk my
music usually does the trick to at least get me motivated to walk to the
mailbox and back!
My “Happy journal.” I keep a journal of things that makes me
happy. It’s an 8x8 scrapbook of random things that make me smile. Scrap-booking and just looking at my scrapbooks
can put me in a great place. If you don’t have the money or movement in your
hands to scrapbook an easier and cheaper way to go is Costco’s online
photo books. There are other websites that do great scrapbook pages but Costco’s
photo books and scrap-booking pages come out to costing less than if you were to
print out each of the pictures individually.
Then I keep a normal everyday journal but I do more doodling
then writing.
I send postcards to
my friends. Letter writing is such an important lost art I think. So I write
letters and postcards. It’s also a good practice to keep you grateful. Writing thank
you notes and love notes to your friends and family really helps you focus on
why you should keep fighting through the pain.
On my good days I do
photography so that on my bad days I can sit in bed or on the couch and have
fun photoshopping them.
I’m not a big fan of facebook, but I’m obsessed with this
website called polyvore.com. It’s so fun! Basically you make little fashion
sets. Sounds stupid I know but it’s my guilty pleasure.
Some other Ideas are reading, blogging, painting, crochet or
needle point, puzzles, brainteasers, soduku, playing card/dice/domino games
with family or friends, cook, etc.
9. Get out and volunteer. As of right now I can’t work. My days
are too sporadic and unpredictable so there’s no way I can hold a steady job.
So I volunteer at a Women’s shelter a couple days a week for a few hours, and
thankfully they are flexible when I have bad days. It’s perfect because for the
most part I sit, but I’m still challenged to get up and help out the girls.
Some days I’m on my feet the whole time. It’s hard but it’s good to push myself.
Everyone there knows of my limits so if I say “that’s too much” it’s no
problem. And since it’s volunteer work they are just grateful I’m there no
matter what. I’m sure retirement homes, shelters, schools, and programs for
persons with disabilities would be more than happy to have you.
10. If you know you can find a job that fits with your body and
abilities go for it.Look for jobs you normally wouldn't, telephone operator, florist, receptionist. Even if you are worried that they will be put off by your
illness. Even if they are at least you tried, but I think you would be surprised
by how understanding some employers can be.
11. My next piece of advice may turn you off but it’s really
important you take it. Get yourself a councilor/therapist/shrink! I will go into the importance of one in a
later post, but for now look for someone
who specializes in chronic illness or disease. My therapist isn’t there just to
listen to my problems, but teaches me ways and gives ideas to improve on my quality of
life. It is also very, very important that you have someone unbiased who you
can really confide in when you have an illness, because they understand all 360
degrees of what it’s like to have an illness, be a caregiver to someone who has
an illness and be a provider or physician to someone with an illness. It may take trying out a couple of specialists
to find one who fits your personality and what you are looking for but once you
find it they can really be a great asset in your life.
If you can’t tell, I love my therapist She’s fun and sassy
and reminds me of a high school guidance counselor. Her purpose is to make me
realize if my health isn’t going to change then I have to. She gives me ideas
on how to improve my life. I’ll let you in on a secret; most of the ideas on
this list were hers.
Which leads to my next word of advice...
12. Read this book:
I have read my share of self-help books, to spiritual books,
trying to find the best way to edify myself. Other than the Holy Scriptures I
can one hundred percent say, for me this is the best book for self-edification.
It’s geared for people with high anxiety, but it works with
people with illness too. For instance it teaches you to take those bad thoughts
you have about yourself and turn them from a feeling into an object that you
can analyze. In doing this you realize what a silly thought, why am I thinking
that. And then you can take your forefinger and thumb and flick them away. I
now view my pain this way. I view it as an object instead of a feeling and
though it’s not so easy to flick it away, pain doesn’t have the power over me
that it used to.
It also teaches you meditation. Something I have been
practicing for a while and found extremely important in my quality of life. There
are some odd meditation exercises in here but just do the ones you find are
good for you. I will also do a post on
my favorite forms of meditation, so look for that.
I’ll be honest It’s a heavy read, and you’ll want to fish
through it fast. The first five or so chapters are okay to scan through just as
long as you feel like you are getting a grasp of what he’s saying because he is
laying a foundation, but it’s really important to take your time on the rest of
the book.
Don’t be afraid to redesign the little assignments he gives
you to fit your situation.
13. Count and organize your spoons. AKA Energy I will go in a
later post, but basically don’t over do it. If you feel good one day don’t
freak out and run a marathon. Otherwise you’ll crash the rest of the week. Plan
out your week and save energy for tomorrow.
14. Last but not least. Confide in a friend. Don’t be ashamed to
ask for help.
I live with my parents and they know what I go through because
they see it firsthand every day. However my brother, his family and my extended
family not to mention my friends in the past were kept in the dark.
It’s important to open up to them so they know the details
of what you are going through. I hadn't really told my grandparents exactly how
bad things had gotten, and they got a rude awakening when I was left needing
their assistance to help me to the bathroom. These two were in their late
seventies and had to basically carry me to the bathroom because I couldn't move
the right side of my body. I’ll spare
you the rest of the details but it’s one of my more awful memories. If I had
been honest with them and had a conversation on how they could help me I don’t
think it would have really traumatized me as much.
I usually don’t talk about my illness with my friends much either,
it just doesn't come up. I won’t let it. Even if I’m on the couch slumped over
in pain we talk about anything else.
However, I've learned I need to give up my pride every now
and then and talk about it. Usually we laugh about the silly things that happen
because I can’t make it to the bathroom in time or fall over because my legs
give out or how I threw up on my dad in the Mexican restaurant parking lot. But
we laugh about it because that’s how we have decided to view it. Not as sad
events, but we force ourselves to see the humor in it. So instead of, “oh (frown) It’s so sad you
peed your pants, and then your dog peed on you.” (Tear.) It’s “Oh my gosh! That is so freaking funny I’m going to pee my
pants right now thinking about it!” (Hyperventilating)
My grandfather had heart surgery this week. While waiting in
the waiting room we ran into some friends from my childhood. It was so strange, but totally meant to be.
They were there because a mysterious ailment made their mothers heart stop. She was rushed to open heart surgery and then rushed to
the best hospital in the state for more surgeries. After talking with my friend
for a little while I decided I should write a
few things to help others experiencing the same situation.
Be as patient as you possibly can.
Don’t be
afraid of prayer, whether or not you believe in God, circumstances like this a
prayer could never hurt.
Always make sure while talking to the doctors
there are at least two of you. One person cannot pick up everything that is
said. Bring a pen and pencil and a buddy to all doctor consultations about your
loved one.
Obey the visitor’s rules. It may get really
frustrating at times because you want to see your loved one at certain times or
you don’t want to leave them. But too many people in the room or staying past curfew
or going in when you have a cold could seriously complicate the progression of
your loved ones recovery.
It’s common for people who have had big
surgeries like brain surgery or open heart surgery to go through a sort of hard
core depression afterward. Help them realize this is normal, bring the light
back into their life and be a good support for them to lean on during this hard
time, but don't get frustrated by their behavior.
Their life may never be the same, tell them it
shouldn't be. My biggest obstacle and sometimes still is, is remembering how
much I used to be able to do and how little I can do now. It’s the most
frustrating part of the journey. I have realized I only have so much energy
every week and if I over do it one day I’m out the rest of the week. This is
important for you and your loved one to realize. They will want to get back to
normal, but it may take time, for me it has taken years and I’m still not even
close to what I used to be. So this is my new normal. I’ve accepted it. But it
took a lot of time a lot of tears and a few broken plates to realize this.
Recovery may take longer than expected. Your timeline
and the body’s timeline can be two totally different things. Push yourself but
don’t get frustrated if you or your loved one hasn’t accomplished what you
think they should by your standards. Your doctor will step in and let you know
if something is wrong. Otherwise enjoy the journey and don’t get mad at
yourself. Anger doesn’t help the bodies progression
Their personality may totally change. It is not
uncommon when something like this happens your personality takes a huge
remodeling. I am the first to admit who I am now, how I handle situations, and
my views on life are totally different than they were before I first got sick.
When you have a loved one who is going through this change it may be incredibly
confusing and frustrating because they are not who you fell in love with, or
grew up with, or love. But guess what, they are. We all change throughout our life’s
but events like this just make the change quicken. I’m reminded a rock slide
that happened in Zion National forest years ago. Before the slide it was well
established in the scientific community that rock formations and canyons take
hundreds of years to be made. But after this unique rockslide the entire areas
look changed. The slide made unique formations broke an arch into a hodo, and a
mountainous area into a canyon. All these
things that were previously thought to take years to happen took literally a
few min. Your loved ones personality may be this drastic, but under everything,
they are the same person, so embrace the new them. If they have traits that are
now considered dangerous behaviors get them help, otherwise try to accept the
new them.
Let them know you are there but give them space.
When your life changes like this, a new self-awareness occurs. Your loved one
may need that alone time in the hospital and during recovery to help them find
themselves again. Don’t take their dismissals personally. Their life has
changed, let them find stable ground again.
I am grateful for my disease.
