Motivation

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Written by Amandita Sullivan
Brought to you by: Hope for Disabilities

"GOOD THINGS ARE GOING TO HAPPEN" is my mantra.  I whisper it upon waking up, while at the doctors receiving bad news, as I battle through one of my daily skull-crushing migraines, when "it's another Saturday night and I aint got nobody" (like tonight lol) and as I lay me down to sleep. Despite what the scoreboard reads, en el fondo de mi corazoncito - in the bottom of my heart - I know that the best REALLY is yet to come.

Whenever people hear my story, they want me to curse the world and stomp on the grave of the man who did this to me. They demand the names and numbers of whomever has hurt me, disrespected me, made me cry or temporarily stolen my smile. I'm expected to despise my life. I'm supposed to not want to get out of bed to face the day. I should assume men do not want to date me. My spirits should be low and my confidence even lower. No one would blame me for keeping my sadness up and my head down. But, that's not how Sully "rolls" ...

I made a very conscious decision in the weeks after my accident. I chose to LOVE my LIFE, even though I may not like my CIRCUMSTANCES. If I don't love my life, then I can never fully love myself. And if I don't love myself, how can I expect anyone else to love me?? This came with the realization that complaining will NOT improve anything. Transforming into Negative Nelly will not magically allow me to run. Holding grudges against "the powers that be" will certainly not empower me. As a matter of fact, whining worsens a bad situation by allowing a person to chose victim-mentality over hero-mentality. A broken spirit is way more disabling than a broken body and almost impossible to cure. So, DO NOT let this happen to you!! We create our reality through our THOUGHTS alone. By thinking positive thoughts & surrounding yourself with like-minded people, you will become unstoppable~ I PROMISE YOU!! By adopting "The Good Things Are Going To Happen Mentality", wonderful situations will begin unfolding before your eyes and beautiful people will walk, crutch and wheel into your life.

On the way out of the hospital one day, my Mom parked my wheelchair in the sun so she could go get the car. A frail little lady, also in a wheelchair, was left in the same strip of sunlight, as well, by her handicap van driver.

Her arm was in a sling and her big brown eyes were welled-up with tears. She informed me that her name was Susan and asked what I had done to myself. After explaining that I was struck by a car, I asked Susan what happened to her. "I have cancer. =( =( ", she said, "But it's treatable... " Her voice trembled and trailed off.

This beautiful lady wanted to know exactly what the doctors told me at my most-recent medical evaluation & what they had been saying about my situation & my recovery in general. I responded very honestly,"Susan, it doesn't matter what the doctors say. We can never EVER base our recovery nor our happiness and optimism on the words that THEY chose to define US. What truly matters is how you feel in your heart. My heart knows I will be fine. This way, I let my heart define me, not my body. This is our unique opportunity to let our hearts transcend our bodies. "

Overcome with emotion, Susan wheeled herself next to me and embraced me. Through tears she whispered, "Amanda, it is like God put you in my path right now, in this little shared strip of sunlight, at the EXACT moment that I needed to hear those exact words. THANK YOU..."

I repeated the quote that I placed in my Facebook status earlier that morning, because it was fresh in my mind:

"A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes." Susan stopped crying, wiped the tears from her cheeks and a bright smile exploded across her face. As we said our goodbyes, I reminded Susan that that it's up to us to keep the candle in our souls burning because that very candle will curse the darkness of our situations down the road. How bright our spiritual flames will burn is determined by US, not by our situations. And, "it only takes ONE candle to curse the darkness." Had I not been injured and at the hospital, I would not have been placed directly in Susan's path. Hugging her made a lot of the drama of my past few months disappear.

This difficult journey, though something I would've NEVER chosen for myself, has been like a Graduate School for my soul. I've learned that Spiritual Strength (SS) is infinitely more important than physical strength. With time, SS heals ALL emotional wounds, thus transforming a would-be victim into A WARRIOR!

My heart is opened to whatever The Universe wishes to teach me while I fight towards my full recovery. This new wave of inspiration has flooded my being so greatly that I almost feel badly for the times I've been frustrated with the crutches and the wheelchair. Focusing on what I can NOT do upsets me every time. I am now maintaining my focus on everything I CAN DO. And, low and behold, I am pretty amazing!! Who knew?? I bet you are, too (you just don't realize it yet). I'm excited to be a part of something EPIC, which is already teaching me more about pain, struggle, heartbreak, hope, determination, inspiration, life and love than I could have ever learned otherwise.

The key to TRUE HAPPINESS lies in keeping your heart opened to all of the lessons that the Universe is trying to teach you with each new experience. This holds true especially during the most trying times of our lives: When the chips are down, the bills are piling up, your back's against the wall & instinct is telling you to protect yourself by closing up to everyone around you. So, keep SMILING when you want to cry. Practice GRATITUDE. Search for the UNIQUE lessons to be learned through adversity. Let your soul overflow with HOPE, LOVE & LAUGHTER! As a result, a spark will IGNITE within your soul cursing the darkness and illuminating an INSPIRED path amongst the rubble of your troubles.

Brought to you by Hope for Disabilities

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 =)

Life Lesson 118: Attending a BSU Football Game (with MS)

Written by: Heidi J Sweson 

 A Single Mom living with Multiple Sclerosis

www.facebook.com/heidiswenson

There is nothing like watching a good football game and the icing on the cake is watching your own infamous college football team win on their home turf.  Combine that with great friends, tailgating, good food and drinks and you have one of the best days of the year.  Now add Multiple Sclerosis to the equation and depending on the circumstances, you may have a recipe for disaster.  I love football, especially college football, so when one of my best friends offered me a ticket I couldn’t have been more excited.  These days getting a ticket to a home Boise State football game isn’t so easy, especially if you don’t have deep pockets.  So no matter what condition I woke up in that day, I was prepared to have a good time, regardless!

We spent the week looking forward to the game, called our friends to see who else would be attending, arranged a carpool (now days parking is almost impossible anywhere near the stadium) and then planned to make it an all day event.  We clad ourselves in BSU attire and were proud to see all the vehicles with Boise State flags flying from their car windows as we drove downtown to have lunch before tailgating.  From there we headed (via complimentary shuttles thanks to BSU) towards the stadium to join the masses of diehard fans who had set up their tents in style, adorned with big screen TV’s, BBQ’s, tables, chairs, you name and they had it.  These are experienced tailgaters!
Unfortunately the day of the game, Boise hit an all time record high on September 24^th of 98 degrees and none us were prepared (at least the other girls had tank tops underneath) but not me!  I was in jeans, a BSU T-shirt, and a sweatshirt tied around my waist, prepared for a cool fall evening.  From the minute we were dropped off, I began to sweat, and it continued to pour down my face, back, stomach, and the rings under my armpits continued to swell as the day wore on.  Gross!  The first thing we did was look for the usual tailgaters we knew who would provide us with shade and ice. Mission Unaccomplished.  Secondly, we searched for and found our own bit of shade and nestled in.  While cowering under a tree I got a text from an old friend who said they were in an RV several blocks over.  We decided it was worth the walk.

Ten minutes later we were welcomed aboard, not sure how much cooler the temperature was inside but at least we were out of the sun.  We were told it was cooler in back of the RV, so I B-lined it back there and hit the deck (in other words I did what my dog does and I laid out on the floor where it’s the coolest because duh- heat rises ;).  We weren’t in there for more than 15 minutes when the generator went out, no joke.  They teased us for being a curse and told us all to jump ship.  I didn’t even have the energy to get up at this point, let alone go back out on the jet black asphalt and pull out my guns to take back over some shade again (not my real guns, my biceps).  I was a wreck at this point.  I told my friends that the only way they could drag me out of that microwave oven was for us to go inside either an air conditioned restaurant or bar.

So they dragged my heavy, sweat soaked body over to a local place which was nearby and soon we were all happy.  I found a place to sit and other than the restroom, I didn’t move.  Speaking of restrooms, who designs them anyways?  Certainly not a woman, because without fail there is always no less than 10 women in line and the men never have to wait.  I call BS!  As the time came for the game to start I was thinking in the back of my mind I’d rather stay in the AC versus sit in the ridiculously hot stands.  However it was a privilege to be in the stands so off we went.  I was two breaths away from passing out from heat stroke while standing in the never ending line to get in.  (Thank goodness I have a sneaky friend.)  Once I was inside, we found our seats in the end zone, in the much appreciated shade, and I made myself as comfortable as possible.  Stadium seating however, is not the least bit comfortable.

The game was a blast, and there is nothing like watching football live with all the other excited fans in face paint cheering at the top of their lungs.  I learned quickly that in the end zone they have you stand up for just about every play to show you are the ultimate supporters.  Right away I started to feel it.  Unfortunately with my poor eyesight I could only see the plays that were on our end of the field.  The screen was too far for me to see as well so a lot of the game was a blur.  I coveted a couch and flat screen TV numerous times.  By half time I was a mess.  I left the stadium (my only shot at using a bathroom) and was able to exercise my back and legs as I headed back over to our favorite spot.  I relished in the AC, comfortable seats, and a TV where I could actually see the whole game.  I had a very hard time making my way back to the stadium. 

A little while after halftime, very slowly but surely, I walked back over and enjoyed the last part of the game.  It was a sure win by then and every time we stood up and back down by then was just sheer pain.  My back was seizing and although it was a good game I couldn’t wait for it to be over.  We shuffled out of the stadium, waited in another seemingly endless line for a shuttle to transport us back downtown to our car.  As we were walking we heard a one man band playing music and talking so we decided to stop for a short time and enjoy the cool night air.  The musician/comedian put on quite a show and totally reminded me of Zack Galifianakis.  I laughed until I forgot all about my aching back and joints.   

It was the perfect end to the perfect day (on the pain scale it rated a slightly lower than perfect).  Once we were home, kids dozed off in bed, sleep wasn’t hard to find.  However, getting out of bed the next day was much harder than expected.  In fact, it has been four days now and the pain in my back has only gotten worse every day.  Whether I’m sitting, standing or attempting to walk like a feebled old woman, I can’t get comfortable.  I strained my eyes trying to watch the game and the heat didn’t help, so I’ve also seen a temporary worsening in my vision as well in my good eye.  

My point in telling you all of this isn’t to complain.  It’s to tell you that given the chance to do it all over again, I’d still say “Yes!” when she offered me the ticket and I absolutely wouldn’t have missed the game for the world.  Just because I have MS doesn’t mean I have to stop living.  I’m going to have setbacks, some minor and some not so minor.  But in the end, I’m going to take advantage of every opportunity and live life to the fullest while I still can.  I have enjoyed a lot more in life by saying yes than saying no.  So the next time an opportunity comes your way, just say YES!

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.

Grounhog Day: Being a Caregiver

Today I have found myself reflecting on all the things that my husband (Stewart) does as my caregiver.  He is an amazing person and I very blessed to have him in my life.  We have been married 13 years now. 

Stewart's morning starts out 5:00 a.m. getting out of bed and getting ready for work.  Then he gets my morning pills together along with my cranberry juice mixed with a laxative and brings it into me to take before he leaves.  He apply's a patch on my back that is a medicine used for early onset Alzheimer's.  No, I don't have Alzheimer's but I do have Multiple Sclerosis (diagnosed 15 years ago) which can have terrible problems with cognitive abilities.  The patch really does work by way. 

Stewart works hard all day and makes a really nice living.  Again like I said before I have been very blessed to be married to him and have him as my caregiver.  He is kind, considerate (most of the time) :o), strong and very smart.  He has learned and understands the fine line between being a caregiver and a husband.  The two are very different from each other and when they get intertwined it can get very messy.  A caregiver has different duties then what the norm is for your spouse.

Back to my story.  Now, it is time for him to come home from work.  He sits in traffic for about an hour before he arrives home.  He comes gives me kiss, pets the kitties and right away starts making our dinner.  You can see that he still hasent stopped since he left in the morning.  Go, go, go is his motto, well not really but it should be because that's all he does from a.m. to p.m.  After dinner is finished he cleans up the kitchen and prepares my evening pills.  After that he is able to rest for a little while before bed.  At that time he gets maybe an hour or so to be my husband before he turns back into a pumpkin oh I mean caregiver. lol lol  It just doesn't stop for him.  After is time to chill he still has to go get his clothes ready for work the next day, make the coffee and clean the cat box.  It's another Groundhog day all over again.  Wow, just writing this I'm realizing really how much he does in his day! No wonder he is always so exhausted and says that he cannot add one more thing to his plate!  I do actually realize most this to a point but I'm not in his shoes to know exactly how or what he is feeling, most of the time he says he is fine.

You are probably wondering where I am in this marriage.  I stay home all day not able to drive much and work on Hope 4 Disabilities.  I do laundry when I can, clean up and organize my house and help out where ever I can.  A lot of days I just can hardly move due to extreme fatigue, cognitive problems with memory and terrible pain in my back and a lot of times all over my body.  Sooo because of all this I cannot be me at least the me that I used to know.  Ok,  that's a story for another time.

Stewart, to the best of his ability's helps me live a full life.  I have so much to be thankful for and I am also thankful that the good Lord is with me and helps me get through my days.  Well, it's time to start the day all over again

 Thank you Stewart for loving me for me!
 Well that's just about it, at least what I can remember. lol lol

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