Not So Happy Anniversary

The other day I had an anniversary. Before you get all congratulatory, DON'T, it was the anniversary of my diagnosis. One thing is certain, there is not an MS patient that I know of that does not remember their diagnosis date. It is the day every thing changed. So in honor of all that I lost, I wrote this poem. I have a determined spirit, but even super heroes can get tired of the fight. 

No quotes tonight. Just my poetry. 

As always, comments are welcomed, and appreciated.

RUNNING

I can still remember the way the wind felt

when it blew against my face as I ran

Ran as fast as I could

Ran for sport

Ran for the sheer pleasure

I would run up stairs

I would run down stairs

I ran from here 

to over there

then back again

I can remember being tired from a run

I can remember being invigorated from a run

I remember when I could feel my muscles flex

Each neuron firing telling my legs how to move

Just so I could run

Run

Run

Run

Running as a child for play

Running as a teen to show off

Running as a mom to keep up with a little one

I would run in the morning

An early morning run

When the grass had some dew 

and the sun was just cresting in the sky

Announcing that day had begun

I loved those runs

Just me, my thoughts and the scenery

Running cleared my mind

I would run in the evening

A long relaxing run

When the sun was setting 

and just kissing the sky goodnight 

Telling me day was done

My troubles were left on the pavement 

With each pounding step

As my calf muscles would push off the ground

My quads giving me incredible arc 

So I could leap as I ran

I didn't just run

I flew

Then it STOPPED

That was MS

I still run

I run through fields and meadows

I run in the streets

I run on the track

I even ran across the globe

Difference is I run only in my dreams

Where my memories of cool breezes

Gently blowing on my face still live

Where I still find peace 

Until I awake

 

Social Interactions

Since I have been on Twitter, another part of the world has opened up to me. I am used to interacting on the internet. My first social media experience happened back in 1993. My then husband had bought a new PC for the household, and there it was, a dial up modem and PRODIGY. I found my way into a chatroom and being ever the social butterfly I jumped right into the conversation. It was different to "talk" via text, eventually I became a pro and moved to  the newer social media access, AOL. This time I was going through a divorce, was a new mother and had a lot of solitude, since in my infinite wisdom had agreed (while I was married), to move to the woods of New York. I was  away from my family and civilization; also known as New York City.

AOL provided me a place to escape, and discover myself. I found supporting people and made actual friends in a chatroom known as Ebony Over Thirty (more affectionately known as EO30). I changed careers because of my exposure to the internet and my interactions on it. I returned to school to become a web designer and programmer.  I was able to make a good living at this new career, my kid was doing well, and I just purchased a new town home. Life was GRAND! Then things changed, drastically. As I previously discussed in a blog entry; 10 Things I Learned About Myself, I was diagnosed with Multiple Sclerosis.  Funny though, as much of a chatroom personality I was, when first diagnosed I retreated away from the internet. I withdrew and told myself I had to focus on my illness. 

The reality was I didn't want to be reminded of all the things I would no longer be doing. The distance between me and the "net" didn't last long. It was on the internet I met my new husband. Then the ever changing internet had new avenues for me to explore. Like the millions of others, I joined Facebook. Suddenly people I hadn't spoken with since high school, college, and even a few from camp reunited with me. Mind you, the only reason I joined was due to family pressure; so they could see pictures of my children. Before you knew it I became a Facebook status junkie, chatting, and once again rejoining my old chatroom buddies of EO30. I was able to "like" things, and get poked, but, like most everything the novelty wore off. Then came Twitter.

What made my experience with Twitter so different from the others is I was able to establish my own social circle. Following those with similar tastes, hobbies and or interests. I began writing this blog and when I post, share it on Facebook and Twitter. One day I tweeted about my MS. What this simple 140 character mention did, was allow me to meet others like me, people with MS. Under normal circumstances, I would not seek out MS support groups, or those with the illness. I meet people everyday who tell me they have a family member, friend or know of someone that "suffers" from this disease.  Occasionally, I meet other people who have it as well. Each time a part of me has that kindred sigh of welcome to the club, sucks to be a member feeling come over me. Thanks to the internet I can speak with those who can truly relate to my situation.  The truth is I am grateful for the internet, for allowing me and more importantly giving me a place to learn and grow. 

Imagine my dismay, when yesterday after I logged on this incredible tool; that allows us all to see the world isn't so big, but rather small when you make connections; I witnessed bullying. Seriously? This is what we have decided makes great use of our time?  Yesterday afternoon, Sherri Shepherd Comedienne/Actress and Co-Host of ABC's The View received vile threats on Twitter. I saw this happening since I happened to follow her. I was disgusted by what was being said to her. It dawned on me that maybe we need a new App for access to the net. If you want access, maybe you should need to take a psychological exam first. This way we can weed out the drama prone. I know it's a bit drastic, but when I hear of children bullying other children with the internet so much so that there is a name for it; Cyber Bullying, one has to wonder if irrational measures should be taken.  The crass idiot who was threatening Ms Shepherd, told her he was merely exercising his right of free speech. This is not so, Free Speech is when you disagree with something or someone or have a thought or idea and express it. These do not include "I hope you get raped" or "Die". That line of thinking is threatening, as well as vile. I am not an advocate for policing the written word, but somehow we need to educate people on how to behave when on the net, and find a way to make such behaviors unacceptable. At least enough to deter this from happening as often as it does.

I have to say the internet has given me a lot. When my physical body became weak and unable to travel the world as it once had, it was still available to me through cyberspace. When I had felt lonely, there were friends, old and new, accessible through this medium. The internet has come a long way since the days of logging on with a dial-up modem. Social media has become the way we communicate with one another. Today not only on our computers, but it is accessible on our phones, televisions, hand held devices and video game consoles. The majority of people are getting their news over the internet. I have seen the creations of sites such as YouTube, Instagram and many others become second nature in a search. Corporations are also taking advantage and joining in with creating pages and accounts on the most popular social media venues. Maybe technology has finally surpassed our society and we need new rules, but I think the problem is simpler than that, one that we all have thought or said not giving much credence to it. This wonderful place and new way of communicating has eroded the ability to truly speak with one another. Maybe we spend so much time speaking in shorthand and living our lives anonymously, we have forgotten how to talk and to listen. If there was no anonymity on the net I suspect a lot of the crude, crass and bullying talk would come to an end. 

This blog ends with one quote and one thought;

“If you bully somebody face to face, and they get upset, you see them cry and be hurt. When it's over the Internet, you can't see the emotional reaction and go along thinking it's no big deal."~ Robin Kowalski

It takes a coward to be vile and vicious with no provocation.  You might feel big and bad when you attack someone with words, but in actuality you only expose yourself for the little person you feel that you are and your inadequacies. Find another outlet for your rage, get help, because at the rate of speed communication over the internet is changing, you may no longer be that faceless bully. When that happens I am willing to bet, you will become a victim yourself. with the rest of us pointing out your failings. Comments are welcomed!

Nursery Rhymes and Shakespeare Oh My!

Do you remember that old nursery rhyme about an old woman who swallowed a fly?  She swallowed a spider to capture the fly, then swallowed some more crap, rather then just spit the spider out!  I mean what was she doing to swallow a spider to begin with?  Was it a dare at the retirement home? Yeah, well I never got it either as a kid. What I do know is that there are medications out there, that for whatever ghastly reason we must take in order to get better, but no one focuses on the side effects.

Recently I became a raging loon. I can say that now because I know who I am, I am well aware of my faults. I am outspoken, loud and brash. I prefer to think of them as qualities to my endearing personality. Until last week! 

Before I continue, I must first apologize to my patient husband, who was made a victim to my recent lunacy, and my teenage daughter. Somehow the little one escaped the complete insanity, most likely because at four years of age she is on her own crazy trajectory, little people are not sane. This period of time found us becoming buddies, as I her mother, slowly disappeared into a crazed monster. 

I had to undergo a treatment of IV Cortical Steroids. Now let me expand on this for you to completely understand. I had an IV with steroids being pumped into me for three days.  The "benefit" of this was to bring down the swelling on my nerves, so that I could function once more. This is not the first time that I have had to undergo this course of care, but it is the first time that I am going to write and tell the tale of me and steroids. Frankly, I normally stay in the hospital for the week when undergoing this treatment because I am in need of physical therapy as well. Not this time, and someone should have warned my husband what fate awaited him.

I have heard the typical warnings of steroids, like most of you, the rages, acne, burst of strength. What I had been clueless too were how these are coupled at once when given a dose via the IV. Steroids do not effect everyone the same way, but the vast majority of people on them do suffer. What they should do is warn the family members that shortly after beginning the course a monster may be unleashed in their midst and to take cover. 

I will begin to describe how after the first half hour of the IV, everything that I drank, including water tasted like metal. Not that I have made a habit in my life to consume chrome, but I imagine that if I were to start, this is what it would taste like.  This was merely the beginning...

It is hard to find the words to explain the hunger that overcame me next. Only complicated by that "everything tastes like metal thing" going on in my mouth, I wanted FOOD! Evidently, when on steroids not all foods are what you crave, this would be too simple. I craved salty foods, which compounds the other side effect of water retention. Now does any of this sound like fun to you?  Regardless, I ate, limiting what I took in, because my hunger is scaring me a bit, and what is more I am getting scared that the metal taste is now becoming acceptable and a little palpable.

Would it be too much to ask that this be the end? Of course, because that was within the first hour, we have a few more days to go here.  Let's get to psycho. Psycho would be the mental deterioration that my mind begins to go into after I am done with the first course. Psycho is the woman that cried at commercials and wept at the story of a puppy that wound up in a cactus. I am not given to outbursts of emotions, but I was going from happy, nay mania, to depression to absolute anger over the most banal things. At one point my mind dare allowed itself to day dream getting into a fight with Iron Mike Tyson! Asides from arrogance to think I had a chance with anyone, what kind of crazy does a person have to be to even envision fighting Mike Tyson?! I dread the idea to further explore that thought process.

Alas, if it were only a tale of being an emotional roller coaster, there are more side effects yet to be explored. One thing my body seems to want me to do is find all its got to give when it came to side effects. Next came the freezing sensation. Freezing is an understatement, to more accurately describe this feeling would require you to take two poles of dry ice and insert them where your leg bones are. Freezing would have been a welcomed friend compared to this! When this sensation finally decides to leave another side effect pops up for good measure. 

The hits just keep coming. I am now going into the next phase, and for me this means acid reflux, heartburn and other pleasantries. My stomach acted as though I went on some acid ingestion bender and it was determined to teach me a lesson. How attractive am I at this point, with belching now being done by me, as if it were an event in the Summer Games this year in London and I was in training.

All of this is only met with the lack of sleep. Remember that line from Shakespeare in Hamlet's soliloquy; "To sleep, perchance to Dream; Ay, there's the rub, For in that sleep of death, what dreams may come"; well I suspect that the young Dane prince was coming off of steroids. I am still going without sleep a week later. This can be great if you are in need of studying for college finals, or finishing a project for work, but when your only job is to get bed-rest to get better, insomnia is not the most effective side effect.

So, to conclude, I had been reduced to tears, fits of rage (with the added bit of delusion; see Mike Tyson), feeling so cold I burned, following an insatiable need to eat massive quantities of food, followed by heartburn so bad I hated myself, and bursts of energy and the inability to close my eyes to sleep for one moment. Yes, I know about side effects, and I suffer from them, and I am not alone. This is what I have to go through to get better, sadder than that, it is what my family has to deal with in the wake of my steroids.
Just think, this blog entry was  based on only day one! 

To leave you without a quote would be so unlike me, so here it goes;

"Healing may not be so much about getting better, as about letting go of everything that isn't you - all of the expectations, all of the beliefs - and becoming who you are." - Rachel Naomi Remen

"You can set yourself up to be sick, or you can choose to stay well."~ Wayne Dyer

10 Things I Learned About Myself

You know there is an old adage that says; "That which does not kill you, makes you stronger" and another one that is often touted about; "God does not give anything that you cannot handle". Growing up, upon hearing bad news, I would listen to adults say these phrases to others in need of solace.  I had begun to think it must have been in the bible, or these people had an insight that I had yet to understand. To me these were merely words of comfort. Little did I know how those very same words would re-enter my life. As some of you already know I have Multiple Sclerosis, MS for short. I have never really discussed my illness with others, I just gloss over it. I tend to say "I have MS" with the same tone that I would say; "I have to go to the Post Office" or "I have a toothache". No big fanfare, no grand pause, just a flat statement. I suppose upon much introspective self examination, (you know me and the self-realizations), I thought I would make it a topic in my blog, at least once.

To begin at the beginning; I am approaching my tenth anniversary, not of my marriage, or graduation, but of my diagnosis. There isn't one MS patient out there who doesn't remember their diagnosis date. This is the date our world crashes around us, when the earth drops out from under our feet, and when the universe and our own body seems to have teamed up to engage in a game of betrayal so great, we don't know how we will overcome it.  A few of us, sadly do not, and enter into a world of depression that it takes them before the disease can. This is not MY fate. I won't let this be my fate. 

Let me tell you how this all began, back in 1995 I threw a party for my online friends. We were all laughing and having a good time. I was single, and pretty much was getting more than just my flirt on. There was a point that I as hostess, got up to the stage to thank them all for showing up and suddenly I fell. It was as if someone cut the strings from a marionette, BOOM, down I went. I got up and played it off, some thought I had too much to drink, unbeknownst to them I had consumed no alcohol. It was jarring to me, but figured I would deal with it later. It didn't happen again for a long time. Then fast forward to 2002. I had a morning routine, get up with my daughter, get her ready for school, go for a run, come home, shower, dress, get to work. Same thing everyday, Monday through Friday, but for some reason I was tripping when I ran. I would look around for holes in the ground, none could be found. Then one day while at work, I felt dizzy and hot. I thought I had the flu and asked to go home, my boss refused, and after she left I knew I had to get home. Delirious, I drove home and went straight to bed. I took a nap, but when I awoke my world was altered, FOREVER. Everything that I knew to be true about me, my life, my dreams were about to be torn asunder, for when I woke from that blissful nap I had no use of my legs. I couldn't feel them, control them, they were no longer my legs. The same legs that let me run, climb trees as a kid, chase my own child around and held me steady as I carried her back to her bed countless times, were no longer there. They were no more. 

The event: I was burning up, I thought if I got into the tub I could cool myself off and whatever was happening to me would end. I low crawled (for all you army personnel you know of what I speak), to the bathroom I went. Once I got there I did not have the strength to hoist myself into the tub. I low crawled back into my bedroom, everything took forever. Then I had to do the hardest thing I ever had to do thus far in my life. Harder than filing for divorce eight years earlier, harder than starting over as a single mom, harder than rebuilding my life. I had to call my mother! My mother had been watching my child after school and I was due to pick her up soon.

These were my words to her; "Mom, I don't know what is wrong with me, but I can't feel my legs or use them. Make arrangements for someone to watch over Danielle and meet me at the hospital, I am losing consciousness and might be having a stroke. Please don't cry mom. I will be okay, but I have to go now and call 9-1-1,.. I love you."

I hung up and dialed 9-1-1. I told the dispatch I was alone on the top floor of my townhouse, and suspected I was having a stroke and losing consciousness. They informed me that I had to get downstairs, and open the door or they would have to break it down. Now, if you know anything about me, you know there is no way I am having my door broken in. I assured her that by all means necessary I was going to find a way to get downstairs and open that door. I hung up, and did the only thing I knew how to do, I prayed. I had not been to church in a long time, but my faith had never faltered. I knew I had a relationship with God and asked him to help me. I prayed just as I had numerous times before, I prayed as I did when I was a child, I closed my eyes and turned my fears over. Somehow, at the end of my prayer I found myself in front of my door, just as the police and paramedics arrived, upon seeing them I passed out.

The hospital: My father had been the one first to enter my door when the cavalry arrived. He rode in the ambulance with me, I had no idea, I was still knocked out. Evidently, in the E.R. the doctors surmised from my condition I was dying. My heart stopped once due to my high fever and came back. Then they attempted to do a spinal tap, I was in and out of delirium. My father, himself a doctor, was the one who would up end up doing my spinal tap. Many doctors were treating me at this time, and then they decided to send me in for a CAT-SCAN, but the machine was down. The alternative turned out to be my saving grace, an MRI. This MRI allowed one neurologist to see what it was, and what was happening to me. It wasn't Lyme Disease, it wasn't encephalitis, it wasn't a brain tumor, and I wasn't going to die, at least not then and there.

The diagnosis: By now I was in a room, and conscious, with my parents around me, my daughter, now at their home was with my sister. I knew I would be fine, I could feel their love and it was all that I needed. Then a doctor walked in the room and asked to speak with me alone. He pulled out the MRI films and showed me my brain. He spoke slowly with concern; "I am afraid that I have some bad news, your films show you have Multiple Sclerosis. Do you understand me?" I nodded, I knew what this was, I suspected it back when I was tripping. I asked for ten minutes, before he sent in my parents. I took those ten minutes to cry, I cried for the cards I had just been dealt, for the life that was abruptly changed. I screamed into my pillow, screamed for the anger I had at the betrayal my body just gave me, a body I had been caring for and depended on. Then I wept, I wept for all the things that in one fell swoop, had just been taken out of my hands, with four words, "You have Multiple Sclerosis". My ten minutes were up, I gathered myself together as the doctor and my parents re-entered my room. I could see the devastation in my parents eyes, the pain that was inflicted on me was upon them as well now. I assured them I was fine, this will be fine, together we will be okay and not all is lost. I asked the doctor what do I do now. His answer was not reassuring, it was bleak. He proceeded to tell me all that I would most likely no longer be able to do, that there were medications to suppress my immune system and hopefully this was relapsing remitting MS. He left me with pamphlets and excused himself.

I was about to enter a new normal. I could accept that, but I would not accept was defeat. I was a mother with a child to raise, and no partner to pick up the slack. Whatever my new normal was, it was not going to be me giving up. I was going to go back home, to my townhouse with four levels, and I was going to continue life as I had always done. My mind was made up, and I never cried over my situation again. My lexicon was to include new words now; cortical steroids, exacerbation, immune suppressants, but they were meant for me to learn, not to let them limit me. 

The 10 things I learned about myself: It is amazing, in a time when all seemed dark, I found hope and possibilities. More than that, over the course of the past ten years I have learned much more and will share them with you.

1. I am strong. In part because I had the greatest support from a loving family. When I needed strength, I took it from them.
2. I can overcome challenges. I knew this before, I rebuilt my life when I was getting divorced and had to start over.
3. I had faith. Although I had not been to church in a long time, my faith in God did not waiver. It was my faith that held me when I needed it most.
4. I could be an example for good. I found myself having the opportunity to teach that anything is possible, and an obstacle is only meant to show you a new way around, not to stop you.
5. I was not resentful. Some people asked me if I ever blamed God, didn't I think it was unfair. If I asked myself; "Why me?". My reply is always the same; "Why NOT me? This could have been terminal cancer, or my sister could have been in my shoes, but I knew that I had the fortitude to deal with the situation, that maybe someone else couldn't.
6. I learned forgiveness. I found to heal my body, I knew I would need to heal my soul first, and forgive people for their wrongs as I hoped they would come to forgive my own transgressions. Without it, I feared I might be stuck, and I had no time to be stuck.
7. I learned to trust my instincts. I had suspected that something was wrong with me, and my doctors had assured me it was in my mind, or stress related. No, it was MS and had I trusted myself, perhaps I would have known sooner and not been side swiped on June 9, 2002.
8. I still had a life. I was not over, I was thirty-five, and was able to date and receive love if it came my way. Fortunately, it did in the form of the man who is now my husband and father of my youngest child.
9. I had a fully functioning mind. I may not be able to run, walk or do other activities that I took for granted, but I still had a mind and time on my hands to explore new avenues. I rediscovered my passion, for writing and here I am today, working on a novel and sharing my thoughts and wisdom in a blog.
10. I am grateful. Odd to some to hear me say this, but I had lived a full life. I traveled the world, participated in some pretty awesome things. I am a mom, recently for a second time and my best friend is my partner and I am able to lean on him, and he on me. Life is good because I am still here, and I have every intention to be here for a long time.

Surprise, no quotes other than to repeat the earlier ones that began this long entry. "That which does not kill you, makes you stronger" and  "God does not give anything that you cannot handle". I have come to find these are more than words of comfort, they are words of truth. No matter what you come across, no matter how devastating, you can surmount them. You have a strength and a will that maybe you have yet tapped into. So next time, when you think you can't do it, think again. Try and if you can't go through it, go around it. Obstacles are meant to be life learning lessons, not life stopping.