For the last 5 days, I’ve been on a journey with a synthetic guide. I’ve taken this trip numerous times, but each one is different –The start, the course, the destination- all unknown. What is known is that where I was before I opened my vein was not a place to stay. The limitations were too great. These setbacks, albeit periodic have their own frightening rhythm. Is this moving toward a dramatic crescendo that will change my symphony of coping?
Tuning up the intravenous, all instruments at the ready, I succumb to an unknown melody. I tip back my head and close my eyes, hoping the song I’m looking for is part of the evening’s program. And with a rush of anxiety the pic opens my vein and the first chord is strummed, falling to a silence that ends with a surprising lyric. And I wonder. Am I at the right performance?
Hooking the pump to my picc line I feel the cool fluid join with mine and for one hour I wait and wonder. Will I be hyper, hungry, agitated, energized, erratic, accelerated, overdriven, unable to rest, sleep, will I find the way to be me? I continue humming the tune that defies interpretation with in my limitation. When it’s gone- from my veins, my body, my mind and song, will I crash silently for an undetermined refrain? Or will I sing better than before, hitting notes not reached in years, when my voice was young and fresh, chords unscarred. With this synthesizer of health, I remember that person found in expected scenes, from performances long over- and as the volume increases I cover my face, plug my ears, refusing to hear, to listen. I won’t get lost; I can’t get caught happily singing, when ultimately I am stuck in the cacophony of what can never be again.
And as the show is ending, a scream erupts from the audience praying for an encore that won’t likely come. One last thunderous request is launched toward the silent stage, and the lights turn on and everyone gets up to go, except for that 20-year old girl. Whose hoping for a surprising finish- an unexpected, long and sweet tone that only she can hear. But even before that moment, the theater sits in silence and she can hear whispers from back stage. She knows she must get up, turn around and slowly walk up the long silent stairs with her stick in hand. Hoping that whatever she finds when the drugs are gone, will be the familiar melody she sings silently in her head. Reclaiming that song that will carry her through the uncertainty of her future, of how she responds to every note to come no matter what the underscore. One that will bring the new phrasing of a self not forgotten and an important new measure to her composition. And without this guided journey, this opening of her vein, heart and mind, she would not have otherwise known it to be worth a listen.
MS~LOL: Multiple Sclerosis a Life Of Learning 
Amy… I am at a loss really. I know this has been an amazing week for you in many ways but what a way to top it off my friend. I am wondering where the music theme tied in to your week – you played it out so beautifully in your piece, (did you like my attempt at that play on words???). But, I am curious if you happened to be particularly inspired by music this week or how that came to be.
I am quite sure that the Amy as we know her and as you know her will continue to be. The week was wonderful and I am SO, SO thrilled that you had that – when least expected. And, if there is a short period of a come down, you’ll know it’s brief and you’ll be back to yourself again. And, there may NOT be. We’ll all be here either way.
Wonderful writing.
Thanks for your response Linda. Where did the music tie in. While I was writing I realized when the word rhythm came in that I was thinking of it in a musical way. As I continued to write with that thought on my back burner (okay…where did that metaphor come from!) It blended very naturally. One of the references to my “scarred vocal chords” really happened. I used to sing in high school and when i went off to college I lost my voice. When I saw an ENT I was told I had scarring on my vocal chords. It was right after my diagnosis and all I could think of was “How many invisible scars do I have ?? geez! It played in to the metaphor perfectly. (yet again!) But thank you for your response. It’s the icing on the proverbial musical score.. or some other mixed meta. 🙂
You are a wonderful writer! My husband does motivational pieces for his firm and his writing flows with humor. I know how he loves to get his “fan mail”! I’m so glad to have discovered your blog, Amy.
This piece resonates with me in a big way. Your musical theme ties everything in so beautifully with what it’s like to experience IV Solumedrol. I hope you won’t mind my sharing my own bizarre musical experience here! It’s pretty funny!
I’ve done the IV steroids five or six times in my MS run of 35 years! Always felt so much better after the “silver bullet” which is what they called it back in the day. It was ACTH back then. I researched that and found out they use the solumedrol now I’m thinking because it costs less (I don’t know that for sure – don’t quote me)! I always felt so energized after each treatment and within three or four days would feel the problems slipping away and my life coming back. I love the energy it gave me – felt like the old me. There was that problem sleeping 😦
The last time I had a five day treatment was November 2008. I requested to give it a try because I felt I was really declining. Not so much one of the old official exacerbation types (where you wake up and – hmmm… wait a second, can’t feel the right side of my body type thing!)
My symphony begins with a charming story my sister shared when they were temporarily living in their RV while their new home was being built. Apparently in RVese the term for your tanked up refuse is “Black Water” . Eeeeeuuuuuwwwww!
They had run into a terrible problem and couldn’t find a willing facility to except their gift. Apparently they don’t want wandering vagabonds to just dump it anywhere! Eeeeuuuwww, again!
This all happened a few weeks befor my treatment and something in my brain pulled it up out of the archives and for three nights as I was trying desperately to sleep the song about “Old black water, keep on rollin, Mississippi Moon won’t you keep on shining on me… Keep on shining your light, gonna make everything, pretty Mama, gonna make everything all right. ” Hopefully you know the song and also, beware because it can really get stuck in your head.
It would go over and over… follow me on my numerous trips to the bathroom and to listen to anything else that might make it GO AWAY! It was very annoying.
After the five days, I did feel somewhat energized like the old days but not quite what I had hoped (I had Thanksgiving dinner for 12 to cook in a few days). Old Black Water would trickle through my sleep now and again (actually still does – don’t get me started, ugh!)
By Turkey day I was exhausted and wondered if I should have had a taper off of oral steroids but none was offered. By the last Thanksgiving family photo opportunity I managed to fall out of the choir like set-up right on my face! The youngsters were horrified, the able bodied started yanking me up immediately (like they do – annoying) and the babies started crying.
I knew I couldn’t drive my son (no DL) home. I hardly could get in the car and by the time we arrived back home I knew I wasn’t gonna make it to the bathroom. That’s right, the damn broke as soon as I was sort of standing up and therefore, my most supportive husband had to fireman carry me into the house with me blubbering inconsolably. Ah, the humiliation.
While listening to hubs having to clean up a gazillion turkey greased pots and pans I sunk into the sleep of the dead. What should have been “Over the River and Through the Wood” became “Old Black Water” a few more times and I was out!
Now I can laugh about it but the experience horrified me. What used to be my silver bullet felt like a ricochet in a big way. I have not requested treatment since! So I take it day by day. Some days much better than others. I just hope that after sharing this musical moment that OBW doesn’t reapper. Be afraid, be very afraid!
From Linda’s comment I think your treatment must have made improvement in your situation. I sure hope that’s the case. I’ll be looking forward to hearing more of your adventures! I love your writing!
All the best,
Nancy D.
Hi Nancy,
Thanks so much for your detailed reply! It was such a beautifully crafted story replete with soundtrack. I’ve got filmmaker in me and it was easy to visualize every part of your tale. I was an interesting telling of this is experience of yours, shared with candor, honesty and humor. Makes for a great read. I’m always amazed at how different our experiences are, and yet there is comfort in the telling and the hearing. I’m coming of the ride in a reasonably smooth way… although I have a swelling in my stomach that I haven’t known since the days of my pregnancy.
And since you are now responsible for the song that will not go away- I’m throwing the volley back: http://www.youtube.com/watch?v=KqZ95a249p0
All the best to you.. and please find me on Facebook!
ag
Amy, I don’t think I could put it any better than those who have posted before me, so I won’t repeat what they have said, just no I second and third their views. (smile) I was thinking about learning a new piece of music though and comparing it to going through a 5 day pulse. You know how the sound of the piece changes as you learn to play it better? Seems to me that is what MS and steroids can be likened to. As we learn more about ourselves, about MS and about ways to cope with therapies such as solu-medrol, the “tune” changes. Most of the time it becomes clearer and more beautiful to us, we enjoy the song and appreciate the fact that we have discovered so many different flavors of the piece. We are glad our skills have increased to match the complexity of the composition. That is until those odd days when our playing is completely off, the notes don’t sound right, the fingering is slow and clumsy and we wonder why we ever thought we were any good. Thankfully those days are few and far between. Skilled musicians have more good days than bad, they are on more than they are off. With solu-medrol you are definitely “on”, even if your skill level drops a little, once it is discontinued. You still know and appreciate your music, you are still a musician in your heart and knowing that keeps your music vibrant and fun to listen too. The memory of your energetic performance will bring a smile to the faces of all who listened to you, as we enjoyed the music that demonstrated who you really are deep down inside where the MS can’t reach.
Hi,
It has been awhile since I visited many blogs.
Decided to do a quick visit to say hello to as many blogs as possible tonight..
Nice to visit your blog its been ages, I am sure it will not be so long again especially now my life is getting better.
I went out this afternoon for the first time since 19 August 2009 and it was brilliant.
Lovely to feel my world getting bigger again after all this time in bed.
Have a good evening and a pleasant day tomorrow.
Love,
Herrad
PS
Please visit Steve @ The Wheel Of Fortuna
http://spinfortunaswheel.blogspot.com/
Important we support him in the first weeks of his bereavement.