N.S., Ellington, CT

Dear MS,

Double vision was a quite a stunt to play, you must have been so angry with me for ignoring you for so long. Of course any soldier in the armed forces would think weakness and seeing spots was just part of it….good play with the double vision.

Finally diagnosed with your miserable presence at 20 years old but couldn’t help but still deny you and push threw the weakness and fatigue until I could no longer pretend. You must have purposely made sure all medicines to slow down your misery is just as shi%y as you!  I HATE YOU, I HATE EVERYTHiNG about YOU. But I will still say thank you ……….

Thank you for opening my eyes to what is truly important in my life and to put complete focus on my husband and 2 boys, I’m not sure if things would have ended up the way they are without you.
Kinda ironic

11 years later and holding strong

Ellington, CT

Missy, “A Letter to MS

Dear MS,

I’m not sure if that greeting is appropriate because you are not dear to me, you were an unexpected and unwelcome visitor that has turned up and unfortunately you will never leave.  The day I found out you were coming to stay is a day I will never forget, that is only if you permit my memory to serve me for years to come but I guess it is for that reason why I have chosen to write this.  It was on that day, the 4th of April 2013, that I was told about how you were residing in my brain and on my spinal cord in the form of lesions.  When I saw you for the first time I knew you were the reason for my stumbling, falling, pins and needles, numbness and vertigo.  I was so mad at you for what you were doing to my body.  Tell me this, why did you have to come and stay with me?

The scars you have caused cannot be seen on my skin.  You prefer to hide inside my brain and spinal cord and the only sign that you even exist is the symptoms you cause me to have to endure.  I’ve never had to deal with anything like you before.  You have made me look deep inside myself and take a good hard look at my life and how it was going to change.  I have had to go through all the steps of grief: denial, anger, bargaining, depression and finally acceptance.  You might think that you haven’t caused that much trouble but you have no idea, the amount of tears i have shed, the anger I have have felt is all because of you.  The times I fell down, felt dizzy, had terrible back spasms, numbness, vertigo and tingling.  I never knew it was you and I really wish it wasn’t you.

Now I know it is you, i can deal with you in my own way and on MY terms.  I have reached the last stage of grief and accepted that you are there.  I will continue with living my life and achieving what I wanted before I was told you were there.  There may be days where your presence is more prominent and you will make me feel like absolute crap but there will also be days where I don’t even know you exist.  Even though you are always in the back of my mind there will always be more important things on my mind then you.

So there you have it MS, you may have invited yourself to stay but I will always be living my life how I choose.  I will live in hope for a cure so that I can finally get rid of you.  Until that time comes I will be attacking you with everything I can.  You have messed with the wrong person MS, so I’m sorry to say that you will never win.  I will always be fighting and I will fight to win.

Yours in sufferance,

Missy

Jill, Dundee, Scotland

MS, (sorry I can’t bring myself to put “Dear” in front of you)

14 years ago I knew nothing about you. Today I wish we had never met. 14 years ago I had a young family and a wonderful fit energetic husband and a lively social life. Today I have a husband in a wheelchair with no use of his legs or left arm and so many other problems. I have two adult children who have to do things for their father they should never have to, and friends I can easily count on one hand. Who is to blame for these huge changes in our lives? You are MS you are.

I resent you invading our life. After 18 wonderful years of marriage you turn up and take complete control of everything. What we do where we go how we deal with every tiny part of our lives. You were never invited and you are definitely not welcome but apparently you are here to stay. You don’t arrive and that is it. No, you come creeping in bit by bit. Keeping us constantly on edge wondering how much damage you are going to do and how long it will take you to do it. You do not only affect the person you invade – although that is bad enough – you affect whole families. You force children to grow up too soon. Parents to cope with the heartache of seeing an ill child and partners to watch the energy of a loved one fade as they try to cope with the day to day caring and providing.

You know what MS? You may be very powerful but you are never going to beat me. I will not let you.

I will fight you all the way. My pride in my husband’s ability to cope is immeasurable. My children and their partners constantly astound me with their help and support for both me and their father. The few true friends we have left I wouldn’t trade for all the acquaintances in the world. Oh you picked the wrong ones for a fight here, MS. You may put lots of horrible obstacles in our way. You may think it is OK to cause all this pain and suffering. I promise you MS if I have to take my last breath making sure my husband has the best possible quality of life despite you I will.

At the start of this letter I said that 14 years ago I knew nothing about you. Well in the last 14 years I must have read everything ever written about you and guess what MS? I have found a chink in your armour. You have made my husband, physically, a shadow of the man he was but you can’t break his spirit – not unless we let you. We will not let you MS. Never. He has his family around him and you have given us strength we never knew we had.  The more you take the stronger we get. The nastier you get the harder we will fight. This is a war MS and you are causing pain and heartache and horrific damage where ever you go but it is a war you can’t win. I will not let you.

Jill

Craig, “2 years and counting…”

Dear MS,

When my neurologist told me you were a possibility, my mum told me ‘it’s ok’ to which I thought ‘what is MS?’. I knew nothing of you or your occupation. I had a lumbar puncture to find out if you were there and (after 8 days on my back!) guess what my result said? But in between those events I started to read up and learned bit by bit. My neurologist told me you might never darken my door step or you might cripple me so I took on the positive mindset that you were going to leave me alone.

Then you stopped me thinking that didn’t you? My arm…that was the day I crapped myself and began to think, maybe my thoughts of positive thinking may have been wrong? That maybe everything wasn’t going to just go on as it had, that maybe things needed to change.

I’ve had problems with my family and friends, to be honest I think that’s what you give most people. They don’t understand, there is a saying I’ve found very appropriate, “they don’t get it, until they get it”. It’s not nice and at times I’ve felt very alone, no matter what I try when they see how I’ve changed they tell me ‘I’ve lost too much weight’ and ‘I need a bacon sarnie’, ridicule me for what I do!

But I’ve pushed on regardless. Thanks to you (and you must be thanked!) in the past year my life has changed. I’ve changed my diet. I eat more healthily than anyone I know, and that is all thanks to you. I’ve done research into things that not only help me understand food in MS but also food in general. Thanks to you I’ll eat fantastically healthily and you won’t hurt me half as much as you want.

I’ve got a loving wife who may not understand but supports me. A mother who, to be honest, supports me with pretty much every decision I’ve made about my lifestyle that I’ve changed. To be honest you’ve changed my life completely. I’m still apprehensive about what the future may hold for us, and I fight for the day that it holds nothing for us. But I know that if the time comes people WILL be there to support me when I really need them.

I’ll be walking my daughters down the aisle, I won’t be in a wheelchair giving them away, I’ll be there on my 2 feet with a massive smile on my face.

So I want to say (in a rather ironic statement) thank you for how you’ve made me look at my life and how I’m going to change it, and how you’ve made me appreciate life and good health that bit more. Just do me a favour and stop making the other people you know bad, they don’t deserve it. No one does.

Hope I don’t see you soon,

Craig

From Chantal

Dear MS,

I was scared when I first met you. I mean, making me numb from the waist down? You really know how to sweep a girl off her feet!

I seriously dislike how you made me scared for the future. How you tainted the thought of having children for me. Instead of being excited for them, you have made me worried I won’t be able to run around and play with them. I don’t hate many things, but I do hate the fact you have burdened the people in my life, people I care about. Because of you, they worry about me…a lot. This is the one thing that pisses me off the most. They never asked to have you in their lives.

I keep you deep inside me wherever I go, no matter what I am doing. I know you are always lingering, waiting for that moment when I am at my weakest. Most of the time, you are just a whisper as I continue on my mission for a fulfilling, happy life. Despite your biggest efforts, I am the happiest I have ever been, in spite of you.

Like a lot of people who have met you, you have challenged me. You have made me, hurt, numb, embarrassed, confused, sad, angry, bitter, lonely, pitiful but most of all, you have made me strong. You are one of the most important teachers in my life. I have found resilience deep down inside of me that YOU have brought out. I hold my head up high with confidence, knowing that like most people, I am surviving you. I keep those who you have deeply hurt in the back of my mind always, and close to my heart. They are always in my thoughts & are my inspirations.

You have made me stumble, but will never make me fall.

Sincerely NOT yours,

Chantal

Malika

Dear MS,

Although it has been 16 yeas since you entered my life, you were a whisper in my mind to which I gave no attention and continued on straight on my mission.  You have pulled me down, held me back, caused my stumbles but you have failed to make me to fall.  You have brought to my life desire, strength, courage, and hope.  No matter how hard life has proven to be with you, I keep you dear to my mind, heart and soul as you are my teacher in life that when I was weak you challenged me to be strong, when I was sad you challenged me to be happy, and when I was in pain, you challenged me to be brave and how to be a survivor.

Many would say that I am out of my mind for thanking you for entering my life, however I find you a blessing as everything in life has a reason and there is a reason that you entered my life, perhaps for the simple purpose to bring knowledge, support and assistance to others that live their days with you at their side suffering and whom are not strong enough to challenge you. I stand at their side and I challenge you for them, for I will take every stride one by one and every day as a new and another that I have succeeded in welcoming you again.  So thank you for being a part of my life and changing me for the better.  Im sure your next visit is not far away so until then I will take a deep breath and guide others on their way.

Malika

Patricia to MS

When I was diagnosed with MS twenty one years ago, I was devastated.

My immediate thoughts were I wouldn’t see my daughter grow, date, let  me
help pick out a prom dress and watch her grow and change.  When MS was the
diagnosis, I felt hopeless. I had a four year old daughter and a happy
marriage and a great job in a coronary step down unit. My primary symptoms
were dizziness, fatigue and heat intolerance.. I knew very little about MS
and dived into all the medical research I could. I have been incredibly
lucky and believe me, I know it. I have been blessed with a daughter who
lives in a different state and yet, it seems, tracks my every symptom.
Sometimes it frustrating, but I love her for it because she has my best
interests at heart. I have continued to work, most recently 12-14 hour
shifts with 25 men with behavioral disturbances. I do get fatigued, however
it seems I do so when I have time to rest. Heat is a major problem,
especially with humidity, but hey, that’s way there is AC.  Dizziness comes
and goes but it’s something I can deal with. A few more symptoms have
cropped up, but I intend to deal with them with a positive attitude, along
with the love of family and friends.

It goes without saying that there are times I say “Why me?” And then I look
around and see people who suffer in a multitude of way far worse than
mine. Kind of puts me in my place.

MS is unpredictable, painful, exhausting and scary. I can treat the pain and
and sometimes fatigue, but I have no control over the MS or other symptoms.

My daughter has walked the MS walk for me for 8 years, 7 as a team leader in
different states. Her friends walk for me no matter where they are and they
have been all over. I love them all for there concern for me. My husband
prefers to believe that because I do so well, as well as try to hide the
symptoms from despite the symptoms, that MS hasn’t affected my life as it
has. It may sound funny, but that gives me even more strength to fight.

Well, that’s my story in a nutshell.

Patricia

DB in Colorado, 22 years with MS

M.S.,

What I want to know is “What have I done to deserve you?”  All I ever hoped for was to help people feel good, to recognize they were special in some way.  Because they are.  And what have I gotten?  Nothing but limitations and barriers.  I guess I was hoping for way too much; selfish really.  People tell me I don’t understand how difficult their life is, that I have been blessed and favored.  They think I am annoyingly optimistic. I continue to hear, “you are so lucky.”  I can only hope that makes them feel good.

You have taken pride in watching me repeatedly stumble and fall, bringing me down to the level I must deserve.  Maybe now reality is going to help me wake up and smell the sewer.  Then maybe I will start to understand.

You look for good people, don’t you?  The other victims I’ve met are almost universally talented and open hearted.  In that way you have done me a favor — I couldn’t ask for better friends.  But that favor is tempered with the pain of watching them struggle.  Every minute of every hour of every day.  And the only way to help is the same way they help me — by being a friend who listens and understands.  I can do that.  Not that you won’t find a way to put boundaries on my listening and caring.  Limitations are your specialty, aren’t they?  And you are incredibly good at forcing them on us.  What you can’t put a limit on is how much I hate you and this disease.  Sorry — that is out of reach, even for you.  Live with it, like we do.  You deserve it — we don’t.

A.L., NJ, dx’ed 2005

To M.S.,

You blew into my life nearly six years ago, wholly uninvited, and you stole the last half of my senior year of college.

When I should have been finishing my last term and saying my goodbyes, I was instead waiting for my double vision to cease, getting MRI after MRI, buzzing with corticosteroids, trying to make peace with injecting myself every day for the rest of my life. Oh, yes, and crying…. there was lots and lots of crying.

When those doctors crowded around me that January day and told me what was wrong with me, the air went out of my lungs. You snuffed out whatever feelings of invincibility had survived past my teens. You reduced a happy and otherwise healthy 21-year-old to a fearful child. You made me anxious of my body’s every twinge. You drowned me in panic with thoughts of a life spent in a wheelchair.

You made me afraid. And for that, I will always hate you.

I hate you because no matter how fast I go, I can’t outrun you. You’re always just a step or two behind, breathing down my neck to make sure I don’t get too comfortable.  You’re a tireless enemy who only feigns surrender.

Of all the things for which I hate you, however, I hate you most for the look on my mother’s face when I told her what I had. When I said “multiple sclerosis,” her heart cracked. All she could say was “no,” and I watched her literally sway with the pain of it. If only for that single memory, for the look on her face that I will never forget, I fucking hate you. And for every moment you’ve taken away from her since because she’s spent it worrying about me, I hate you more.

I hate you for isolating me from my peers, who can live lives with just conventional worries.

I hate you for the hours I’ve spent in MRI machines trying to lie perfectly still, worrying what the results will say.

I hate you for giving me secrets to keep — from new friends, new employers, new love interests. I hate you because anyone I date seriously ultimately has to learn that I that I am much more flawed than normal, that I’m out-of-the-box defective. I hate you for making me, at times, feel less worthy of another’s love because I don’t ever want to become a burden.

I hate you for making me hesitate to ever plan anything too far in advance.

I hate you for making me fear becoming a mother — for the fear of the guilt that would swallow me if my child couldn’t skip out on these bad genes…. knowing I could have prevented him or her from ever having to stare down the barrel of a life with you in the sidecar.

I hate you for so many more things, but I’ll stop now to tell you that, to your chagrin, you have not wrecked me in these six years.

You’ve certainly changed me, worn me emotionally — and being the merciless, caustic thing you are, I’m sure you’re not quite done with me — but I’m still here, still kicking, and I‘m pretty tireless too.

I just wanted to make sure you knew that you will never define me.