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.
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.
- I am strong. In part because I had the greatest support from a loving family. When I needed strength, I took it from them.
- I can overcome challenges. I knew this before, I rebuilt my life when I was getting divorced and had to start over.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
Thanks for sharing your heart . I feel the love and peace that comes from the joy of sharing what might appear pain but it's real love. The joy in encouraging us to know we too can handle anything that we might find difficult to face.
ReplyDeleteBeautifully written. I've been recently diagnosed with MS myself after having 2 "episodes", vertigo and double vision. Thank you for your persevarence - MS is not life ending but life changing.
ReplyDeleteAdriene Smith (aka AGirlyxox from EO30)