Me and Missy, my Shadow | Filed under General
It is now known that Missy most likely came into my life, overnight, when I was a teenager, announcing its arrival by removing all feeling in my legs while I slept. There was several times when I woke up and tried to stand, I fell over, like a rag doll. It did not make its name known until years later when I was settled into a job, into a marriage and life, as I knew it, was over.
Since then Missy has been lurking in the shadows wherever I go, stalker-like. Sometimes it tortures me by pressing an electric cattle prod into my face, sticking pins in my feet, or binding my legs so tightly that I can no longer feel them. Sometimes it mischievously covers one of my eyes with a hazy cloud or snatches words from the tip of my tongue. But even when it is not active, it won’t allow me to deny its existence.
It certainly hasn’t been as I thought it would be years ago, when I heard the words “I’m sorry but you have multiple sclerosis” come from the neurologist’s mouth. It was all surprisingly blunt. There was no music playing in the background, and I didn’t collapse in a heap and devote the rest of my life to charity work. I just shed a few tears and fell back on the old familiar comforts of my life.
All I knew of Missy was what I knew from patients I had taken care of in Nursing School or I’d read or seen on campaign posters or television programmes, so I expected to become quickly and progressively disabled and to require a wheelchair. The good news is that hasn’t happened in that way. The bad news is that it still might, one day — in a month, or a year, or in two decades. What I didn’t anticipate was that, irrespective of the severity of my symptoms, the diagnosis of my condition would change my identity, the way I see myself and how other people see me.
Each of the people with Missy has their own, individual stalker. Some of us are crippled or blinded by the condition, or unable to swallow or speak. Some of us use canes, walking aides or wheelchairs and have specially adapted cars and disabled parking badges. But the lucky ones, like me, are to all intents and purposes able-bodied and fully-functioning. We continue to work as long as we can, we shop, we play and we travel. Our symptoms are invisible.
Most people who have been told that they have an incurable condition like Missy have one of two reactions: they either go into a state of denial, or are consumed by the news. I had the second reaction. For months I lived and breathed Missy, researching it, writing about it and seeking out other sufferers. I also lived each day as if it were my last. I decided; the illness that would do for me, in the end. I therefore reasoned that I didn’t have to worry about cancer or heart disease or epidemics.
The problem with this approach is that it is exhausting, not to mention expensive. It is also irrational. Most people with Missy, live a normal lifespan, falling prey to exactly the same bugs and tumors as everyone else. It’s not fair but having Missy offers no protection. In fact, I realized that if I could be struck down with something that affects just 1 person in 1,000, what hope had I of avoiding my one-in-four chance of developing cancer? I’m no betting woman, and I know statistics are little better than damned lies, but it doesn’t fill me with confidence. Now I’m sure that I’ll get everything.
Just as someone with anorexia sees a fat person when they look into the mirror, so I see a healthy one. My self-image has never quite caught up with the knowledge of my condition. I have Missy symptoms — fatigue, tingling, blurred vision, numbness a heavy leg that sometimes shoots out of its own accord — but nothing that has stopped me, now aged 49, from living a pretty normal life. Yet I find it nigh impossible to get insurance or to pass a medical. So who am I, a sick person or a well person? Disabled or able-bodied? The truth is, I don’t know. And neither, it appears, does anyone else.
It is no less confusing in the world at large. When I mix with the Missy community, I feel like a fraud because I can walk unaided most of the time at least for short distances. My friends and family have stopped asking how I am all the time. But they sometimes seem surprised, even resentful, when I have symptoms and have to cancel engagements or leave an event early. It’s as if they have forgotten that I have Missy because they can’t see it. It was yesterday’s news. I’ve also noticed that as I’ve grown older, attitudes have become less sympathetic. In my early days at the age of thirty, when nobody was aware of their mortality, my diagnosis came as a huge, scary shock. Now, in my forties, people say things like “everyone gets something”.
Missy has had to become another facet of my persona, like having curly hair straight hair, hazel eyes or green eyes or being a writer. I’m not sure how I’d feel if a cure were found tomorrow. I’d take it, certainly, but it would have devastating consequences: my identity would be destroyed all over again. I don’t want sympathy or praise; I’m neither brave nor exceptional. There are probably thousands of people like me out there. I’ve got one foot firmly on the pavement, the other in a wheelchair. Is it any wonder that I fall flat on my face sometimes?
Just like I did last week. Yes I have got on with my life and found a place where Life Is Simply Good here at Always Victoria with you my friends.
October 11th, 2005 at 11:33 pm
I remember 8 years ago a friend of mine called me and said that he hadn’t seen his girl friend in 2 days and she wasn’t home.
They didn’t live together at the time.
He had called her place and there wasn’t any answer and her friends told hom that she missed their night out.
He came by and picked me upo and we drove aimlessly around looking for her. We went by her work and she hadn’t shown up that Monday which was uncharactoristic of her.
We went by her appartmwent again and there was still no one there. He didn’t have a key to get in and he was now scared. I looked through the window and a crack in the curtain and I swear I saw someone on the couch laying down. I told him this and we went back instide and I kicked in the door.
His girl friend was on the couch and the only thing she could move was her eye lids.
We called an ambulance and they took her t the hospital.
A week later she had some movement in her legs and after a bunch of tests it was found out that she had multiple sclerosis.
She did not know this before hand, it just creeped in on her.
She was only 35.
She slowly got better but not to where she was and now walks with a stroller. Buddy moved in and took care of her for a couple of years until he died of a heart defect that he didn’t know about.
Today she lives with her teeneage son in that same apartment.
Multiple sclerosis is a burgler that sneaks in on you when you least expect it to rob you.
Have a nice day.
October 11th, 2005 at 11:43 pm
I honestly can’t imagine facing those kinds of issues on a daily basis Vickie, you must have so much inner strength! I can see where it turned your entire life around into something totally different than what you once knew. I have two wishes for you, my friend. Serenity. Good Health. You are in my prayers, dear lady.
October 12th, 2005 at 5:15 am
The acceptance and perserverance you show the rest of us is an inspiration Miss Vickie. May God bless you, as he has us by allowing us to know you.
October 12th, 2005 at 6:41 am
Acceptance is a huge step, and helps us face our “Missy’s” head on. You are such an inspiration, not living and loving because of Missy, but in spite of. She is a part of you and is part of what has made you so strong. You will beat her, one way or another. That I know. You’re one hell of a lady… Love you *HUGS*
October 12th, 2005 at 8:07 am
Heyu girl, just checking in too make sure your still pluging along! Have a good hump day!
October 12th, 2005 at 8:24 am
I will simply say this: I admire your courage and approach to this illness. You are inspiring many with your writings. Maybe that is the purpose of your life here on earth. There will be no Missy in heaven.
October 12th, 2005 at 8:46 am
It’s a bitch isn’t it? No matter how hard you try, how hard you work, how much you learn, there is still a part of Missy that holds you and controls you. That keeps you tied even when you know that you should move on and are feeling ready it’s still there.
People have a hard time understanding or even thinking of that which they can not see. It’s easy when you see a person in a wheelchair or using a cane. YOu have two choices….acknowledge the ‘defect’ and move on, or ignore it totally and move on. Either way the thought is “hey they’re a sorry person, but thank heavens it’ll never happen to me.”
With something like Missy, when it’s the quiet invasion that shows over time instead of one big whallop. People get scared. They have to admit and accept and they can’t just move on with a “thankfully it’s not me” because it’s invisible and therefore can be found in ANYone. Most are afraid to look too close for fear of finding it within. My family is a perfect example.
When I was diagnosed four years ago, Vickie, my family did the same thing…”Oh you poor person!”….I got the phone calls, the cards, the sympathy, etc. When I didn’t immediately drop into a wheel chair or a hospital bed or become horribly disfigured they almost seemed to accuse me of playing on their sympathy for something they didn’t see as ‘real’. Strange how that happens, isn’t it? Almost like getting blamed for getting a disease.
Anyways, I just wanted to say, as a person living with her own Missy and seeing and feeling the same types of things, you are one classy lady. You handle yourself here with grace and wisdom and great strength of character.
Thank you.
October 12th, 2005 at 9:07 am
Quite possibly the most accepting of one’s fate I’ve ever read.
You’re an inspiration!
October 12th, 2005 at 9:31 am
Life is what you make of it, and you have chosen to be a light.
I had a friend several years ago, about 3-4 years younger than I. We were having dinner one night with a big group, and one of the girls noticed he was just sitting there. She asked if he was okay and he said he didn’t feel well and was going to get some air. When he tried to stand up he couldn’t.
After taking him to the ER it was determined he’d suffered a very mild stroke. During the tests (don’t ask me how) they found he had MS.
He was by all counts healthy — considering he smoked heavily and drank hard liquor. He gave up the drinking, and it wasn’t long before he was walking witha cane. Then he’d have days where he could walk like normal.
I moved away about nine years ago and I don’t know how to get hold of him to see how he’s doing.
October 12th, 2005 at 11:02 am
How much strength you have to live with and accept your disease. I’m sorry that your friends and loved ones sometimes forget your struggles and are not understanding or compassionate.
But it sounds like you are centered, grounded and have a good relationship with you higher power to get you through the difficult times.
Your posts are inspiring. I look forward to reading them daily.
October 12th, 2005 at 11:33 am
Hope you’re feeling better. Keep the faith! Take care…
October 12th, 2005 at 11:49 am
It’s so refreshing to know you do not let Missy control your life. I know she tries. She came to visit me almost eight years ago. She hasn’t tried to take over, thankfully. The description you offer is spot on when she is lingering.
Lois Lane
October 12th, 2005 at 2:04 pm
My brother in law has ms and he is functional now that he has gotten past the devestation and taking all kinds of different meds that were killing him more quickly then anything else. He is now working and living his life as if he has one. I just took him some time and some tough love from my sister, They are seperated and have been for many years. They have a son together. His Mother died from MS. My nephew has a high probability for getting it.
We all fall flat on our faces at times. Regardless of what we have or have not. You are loved and treasured dear friend. And when you can no longer stand we will stand for you.
October 12th, 2005 at 2:24 pm
I haven’t had a friend with MS till I met you. My stepsister had cerebral palsy.
I’m glad that you’re in my life, even with Missy. You are the treasure, either way.
October 12th, 2005 at 3:48 pm
I love the rich tapestry of your writing. Recently I did a post about a friend of mine who is physically challenged. Great posts here!
October 12th, 2005 at 10:34 pm
You have such inner strenghth and resolve…I take my hat off to you.
October 12th, 2005 at 11:46 pm
I have a very dear friend who is a paraplegic, the result of an auto accident when she was 27.
When my sister-in-law Wendy was diagnosed with MS, my friend told me that she thought that being a paraplegic was better than having M.S. for many reasons. People with M.S. don’t know what their next symptom is going to be, that depends on where the next brain lesion happens to turn up. People with M.S. don’t know how they are going to feel from one day to the next. People with M.S. walk up a flight of stairs one day and the next they can’t get up out of their wheelchair.
There is no set of symptoms that you can apply to M.S. It is difficult to establish a community of people afflicted with M.S. because the symptoms vary so widely. For the same reason it is difficult to find support.
God bless you Vickie, we all have our crosses to carry, and sometimes the burden is heavier than at other times. Lean on your friends and those who understand when the burden feels too much.
October 12th, 2005 at 11:53 pm
Yes, it would define one’s life, but you have not let it destroy your spirit–that’s so important! You seem to have a wonderful perspective about it.
October 13th, 2005 at 1:46 am
You are a brave and strong person. You set a powerful example for people who are confronting an illness like ms.
October 13th, 2005 at 1:52 am
Wow, Victoria. Thank you for sharing something so intimate. I now find your writing even more inspiring than I did before. God bless you lady–I will keep you in my prayers.
October 13th, 2005 at 6:45 am
I so admire your attitude about adversity and the appreciation and thankfulness for that which isn’t adverse
October 13th, 2005 at 9:36 am
YOU, my Dear, are an inspiration !!! Thank you. And you are in my prayers daily.
October 13th, 2005 at 11:50 am
Vickie, thank you for letting us come on your road for a little bit. Your inspiring posts are always helpful to fill our lives with goodness. Your personal posts bring us closer to you, and this one was amazing to read. Of course, I wish that Missy weren’t a part of your life, although, you have a beautiful perspective on life at this point, possibly because of your struggles. We don’t know where you would be in your life and what you would be doing and giving if you didn’t have Missy. Nonetheless, she is not a welcome guest. Especially as a permanent guest.
I know you’ve heard this time and time again, but you are an amazing person. I can’t tell you how much I admire you for everything you’ve endured, and how you choose to live your life and be there for others.
October 13th, 2005 at 2:20 pm
That was beautiful.
So are you.
October 13th, 2005 at 2:58 pm
I have a cousin who is just a few years older than me [I am 35] and she has MS, too, and like you manages to live a fairly normal life. I am thankful for that for her and for you.
Don’t worry about being a sick or a well person–just be the fabulous person you are. You are an inspiration to many. I am one of those many!
October 13th, 2005 at 7:24 pm
What’s in a name? I have a daughter Vicki, no e, who had a fall 7 years ago, only fell about 8 feet, since then she has no sense of smell or taste, bad enough on their own but she also suffers almost constant migraine headaches.
My point being, she copes with her problems admirably and leads a busy near normal life under difficult conditions, much as you have learned to do, I have only love and respect for the two Vicki’s in my life.