Don't Stop ~ Get it, Get it...

Written by:  Amandita Sullivan
 www.facebook.com/amanditasullivan

Whenever I have a long night of not being able to sleep because my body is killing me, I take a look at something like this: The final page of my accident report, with some extra notes added onto it. Reading the last line of this paragraph is scary, as is the thought that the driver was in a position/condition in which he had no idea he was operating the vehicle with a person on the trunk of his car. They say that, "he is a wise man who does not grieve for the things which he has not, but rejoices for those which he has." Even though things have been less than ideal since, that day could have ended much differently for me (and not in a good way). Focusing on my multiple blessings makes me feel fortunate and beyond grateful that I'm in one piece today. Let's be honest: Having to fight your way to the top of any mountain stinks. But, once I get there, all the sleepless nights, tears, pain and struggle will have been worth it. So today I've got my eye on the NYC Marathon that I will be running someday. I can almost feel how exhilarating & empowering crossing the finish line is going to be =)

I HAVE FEARED BEING LABELED 'DISABLED

"he offered to pay me $20 bucks to not call the police & then left me for dead"

In the past, it has given me great Serenity to hear that my loved ones "don't see me as disabled." I have been called "a crippled b*tch" by heartless girls. I've had cabs stolen from me in the rain by able-bodied people who waited for me to catch the cab & then, as I struggled to crutch towards the door, ran in front of me & took it. I dated a boy who's parents, after meeting me, told him that "he deserved better than a crippled girl" & that "it was obvious that he was settling with someone who's disabled." I FEARED HOW PEOPLE VIEWED ME. I wanted desperately to be THE OLD ME: To run, skip, jump, hop, dance, swim, boogaloo, slip-n-slide, sprint stairs at the HS stadium, drive, go on adventures, rock climb, surf, pick up my niece & nephew, wear heels & pants that fit with a huge knee brace. I was riddled by guilt because the children I had picked out to be in an orphanage in Mexico City (which was to open March 1, 2009) are now lost in the streets bc I was unable to be there to finish setting up the shelter. The family of the 81 year old man- who hit me, offered to pay me $20 bucks to not call the police & then left me for dead- blame ME for his death 9 months afterwards. The man had a heart condition & his family contends that all the stress of what he did to me "did him in". I am broken-hearten over missing my cousin, Christy's, wedding this weekend in CT (my doctors have ordered me to bed rest again). I have missed college, HS & study abroad reunions. I have had migraines that lasted for days and left me hemorrhaging (blood and cerebrospinal fluid) from my ears and my nose. I have gone to the Emergency Room more in the last 2.5 years than I have gone out and had fun. I have done double sessions of Physical Therapy 3xs a week for over two years. I have cried myself to sleep more times than I could ever count. My baby niece refers to any crutches as "Mandy" and it dawned on me that neither my niece nor nephew remember me any other way than injured. I have met more inspirational people in the last few years than I ever imagined possible. I have ridden on the back of a moving vehicle with a driver who had NO IDEA I was on his car & and lived to tell the tale. If I had landed a different way upon hitting the street, the disks in my Thoracic spine which are impinging (poking) my spinal cord could have sunken further into my spinal cord & left me quadriplegic. ** I AM BLESSED ** I have numerous traumatic brain injuries and can still form sentences. I am surrounded by the love of my friends and family. I feel a burning desire inside of me to someday share the lessons this nightmare has taught me with the world. I have discovered that life is more about a series of ATTITUDES, as opposed to a series of CIRCUMSTANCES. I am infinitely stronger than I ever imagined. I have the cutest little Jewish Neurologist from Brooklyn who makes me want to hug him every time he speaks, even when he's giving me bad news. I recognize the light in EVERYONE I cross paths with. I have eliminated all negativity from my life & only welcome positive energy. I can not control the past but am controlling what I will do with it. I am BETTER than the old me: I am stronger, more focused, more driven, more appreciative, more loving, more hugging, more dreaming- My heart broke in early 2009 along with my body, but I kept it opened and it has GROWN & is now overflowing with love for everything around me. I have gone to the beach and watched the sunset over the water, something I dreamed of doing for the year+ that I was in bed for. I had a team of dragonflies land on me while sitting in the sand & discovered that dragonflies are NATIVE AMERICAN symbols of hope, strength in the face of adversity, endurance, rebirth & rejuvenation. I left the beach crying one day after seeing everyone around me doing everything at once that I wish I could do, only to force myself back to the beach the next cloudy day. I wore a hat down low & was on the verge of tears. I didn't want anyone to look at me because I felt very aware of how DIFFERENT my body was from theirs. My twin brother, Ryan, took a picture of me with the cloudy sky in the background & we were BLOWN AWAY when we saw the pictures: The dark, cloudy SKY was opening up above me and a bright, vibrant light was shining through and touching me in every picture (shown here). I knew my angels were sending me a message that "EVERYTHING IS GOING TO BE OKAY". I want you to see me for WHO I am today. I am disabled. I am beautiful. I am strong. I am indestructible. I am determined to not let my physical limitations hold me back. I want you to think of me when you see someone wheeling themselves, crutching or caning themselves through life. I want you to realize that THEY, I mean WE, are no LESS than YOU because we are DIFFERENT. Every wheelchair, crutch and cane has a story and a HERO behind it. Our society should EMBRACE this inspiration instead of constantly shunning it. I am a spiritually-remodeled version of my pre-accident self. I REFUSE to stop fighting towards my COMPLETE recovery. FAILURE IS NOT AN OPTION!! In the meanwhile, I am learning a plethora of lessons from this debacle & hope that no one ever has to experience first-hand what the last few years have been like for me. But, they DO say that pressure MAKES diamonds. And what girl doesn't love Diamonds, right?!?! I will proudly wear these $piritual Diamonds as the new jewelry of my soul during my healing process and long after my recovery is complete. My wheelchair may not have hot rims but my soul is most certainly bling-blingin these days... and that makes this girl smile =)
Brought to you by Hope 4 Disabilities

Written by Amandita Sullivan http://www.facebook.com/AmanditaSullivan

MRI's are Scary: Don't You Think?

Being inserted in an MRI machine

How did I cope being diagnosed with Multiple Sclerosis?
For me this one question, "How did I cope being diagnosed with Multiple Sclerosis"? does not have an easy answer.  As I reflect back to that time when I had my first symptom I had felt a very strange feeling on my rear on the left side.  At the time I could not even describe the feeling.  It just felt like there was a big whole, now I know that it was numbness.  This was on a Thursday night.

The next day it started going down my left leg straight into the foot.  My left foot felt huge likes an elephant foot but when I looked it down, I saw just my foot.  I had to work that Friday and I always wore high heals with my suits, well that day I had to were some ridiculous flats that I had.  It did not go well I really needed to sit down but I couldn’t because I could not let this interfere with my career.  My boss kept asking me if I was OK, he was worried and told me that he was going to send me to the emergency room to get looked at. That was on a Friday.

Sunday I went to a different one and then back to work on Monday but my boss sent me to a different emergency room.  At all three visits they found nothing.  I was tested for upper GI stuff and basically everything under the sun.  The doctors were very puzzled and could not understand it, which made me feel very isolated and alone.  What was wrong with me?  At the third visit on doctor came to me and said the only thing he could think of what that if I had some numbness maybe it was neurological thing and that I should find a neurologist.

Now at that time I never heard of a neurologist I asked if the doctor could refer me but he could not for whatever reason.  I guess the first thing I did was go home and lay down so I would not get a serious headache and wait for the pain of the spinal tap to go away.  At this point I had not yet been diagnosed with MS my doctor was checking for viruses.  My doctor said that viruses could mimic many things so he need to be sure, but my symptoms all led down the road to Multiple Sclerosis. 

A week later I went back to the neurologist and he confirmed his suspicions that I had Multiple Sclerosis but he wanted an MRI to seal the deal I guess.  So that afternoon I went and had my first MRI.

Now there is a funny to tell about my experience.  About 3 weeks prior to the MRI I went and had my bellybutton pierced (not knowing that I would have to undergo an MRI). You cannot have metal on you during the test so I had to take it out.  I was so worried that I would not be able to get it in that when I was in the dressing room putting on my gown I called the piercing place, told them what was going on and if they would put it back in for me.  So after my MRI I went to Pacific Beach, Ca and had the technician insert my piercing one more time.  I was so glad that I did this because I was terrified of putting it through the sore skin.  So I was like so happy and now nervous of what was a head of me.

I had never seen an MRI machine except on TV and what I had seen was a tiny hole that I could not see how I or anyone else could fit into.  I walked into the room; it was very cold and very sterile and very white.  The MRI machine looked very intimidating and loud.  The technician had me lay down on the long thin table that goes into the machine and covered me up with warm blankets.  Do you want some headphones to listen to music she asked and I was thinking how odd to ask me such a question.  Did this mean I would be in that thing for a long time?  She explained that the machine gets this loud knocking sound and can be a little scary.  Well once she had put this brace thing on my head and locked it down into the table I started to freak out.  Total anxiety!  Please I told her let me where the headphones so I would be able to relax.  My neurologist did prescribe a pill that would help me with what I was feeling it’s just it had not kicked yet.  So anyway, the technician left me alone on the table and left the room to watch me through a window.  OK I’m lying there wandering what is going to happen next and the table started to move backward.  All I could think of was to start praying and ask for deliverance of this experience.  The table kept sliding backwards and seemed to never stop until I was all the way in.  I was so afraid to open my eyes and when I did I really regretted it because I could see how small and tight it was inside and it was so bright.  I had my headphones listening to top 40 radio, my medicine was kicking in and I was starting to relax thinking this wasn’t so bad.  Well wrong thinking!  There was more to this experience!  The machine sounded as if it was being hit really hard on both of it’s sides and started to shake.  I started praying again and then fell a sleep, which was good; I did not have to live through the battle that the MRI machine seemed to be having.  Once in a while I would hear a voice telling me to be still and not move my head, the voice sounded so far away like I was in spaceship or something.  After awhile the table started to move forward and the sounds had stopped and I was trying to wake up from the grogginess of the drug, but it was very difficult.  “How was it? It’s so bad is it?  The technician said to me and I was no way in agreement.

Hope 4 Disabilities

 Kimberly was diagnosed with Multiple Sclerosis in 1996.  In 2003, she had to leave her career in marketing because her disabilities were advancing.  It was at this point that she realized  how little support is available to those living with disabilities.  She especially noticed a lack of of access to resources. 

This realization led her to found Hope 4 Disabilities, a non-profit organization whose vision is tremendously comprehensive.  Whose mission will be to reach to the disabled with resources and support.

H4D embraces a broad definition of “disabled” which includes both temporary and permanent mental, physical, and emotional disabilities.  Kimberly believes that disabilities exist as much in ones mind as they do in ones body—and that all “disabled” individuals should have ready access to resources and support.

She believes a centralized database, readily accessed and easily searched, is merely a place to begin.  She, along with her Board, are working with State officials and with other community organizations to provide the assistance and support that will allow disabled individuals to participate as equal members of our society.  Their dream is that, one day, society will “treat all people with disabilities as just people; where we don't see the disability, we see the person.” 

H4D is chartered to  1) improve the lives of all disabled people, from conception to natural death, through services, advocacy, and education; and to 2) provide services and education for parents who have children with a disability.  It has secured non-profit status.  Kimberly L Selden is the President, Heidi J Swenson is the Vice-President, and their Board is composed of both resource people and other disabled individuals or parents of disabled children.

More information about their work can be found at www.helpsfordisabilities.org www.kimberlyselden.com