Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
MS Friends, MS Children, Parenting, and CCSVI
from Angela of Gracie's Mum
In preparing for MS Awareness Month, as you know, I approached several people and asked them to think about providing guest posts. In all, I had a great response. I was able to help tell the story of a fellow mom with MS, a dad with MS and the spouse of someone with MS.
What I was unable to obtain was a post from a child of a parent with MS.
I spoke to several people regarding their mom’s MS and to one person regarding her grandmother who had MS.
It was intriguing to experience the responses. None of the children of a parent or grandparent with MS was able to share their story.
Many, although they wanted to, felt they couldn’t get their thoughts and memories together in order to appropriately tell the story they had to tell.
Another issue, shared by all, was that to retell the memories, to broadcast their thoughts, was far too painful.
My thoughts quickly shifted from intrigue to fear.
In a candid conversation with a friend from Ontario about her mother’s MS, she revealed that “MS took the spontaneity out of going out for dinner, shopping and many other things. Most of our activities had to be carefully planned.” This same friend remembers at a very young age noticing her mother having to take rests along the way from home to the bus stop and that shopping eventually became difficult due to the narrowness of the aisles and the width of her mother’s wheelchair.
To the average person who has never experienced a parent with a chronic illness these examples probably mean very little. To a parent who has MS, who has an active child and a passion for leading a normal life, these examples are frightening.
I do feel a sense of relief in knowing that Grace will likely never remember a time in which I didn’t have MS and therefore will probably never lament or mourn the loss of those easier times. What I can’t come to terms with is that she will likely mourn and lament the lost opportunity to have a normal, easier life.
To have a life where mummy, not just daddy, can run and play in the yard. A life where mummy, not just daddy, can ride a bike to the store to get slushies. A life where mummy, not just daddy, can walk the beach for hours combing for rocks, shells and beach glass. A life where mummy isn’t always needing to sit and rest. A life where mummy is always present, not always needing to lie down. A life where mummy’s, not only daddy’s, legs work and work all the time. A life where the house, and location of that house, isn’t determined by what mummy can and cannot do. A life where planning is because we want to, not because we have to. A life that isn’t measured in spoons. A normal, easier life.
Too many times already I’ve noticed how much she has been forced to mature beyond her years. Too many times already she’s been the one consoling me. Too many times it’s been her little arms wrapped around me, or rubbing my back during one of my weeping, sobbing breakdowns. Too many times she’s asked me why my leg shakes or why I’m tired. Too many times she’s asked me if I need my cane, would I like her to get it for me. Too many times while at physiotherapy or doctor appointments I’ve had to explain a walker or wheelchair. Too many times I’ve heard her say how glad she is that I’m not in one of those anymore. Too many times, I’ve heard her say how glad I’m home and that she never wants me to go to the hospital again. Too many times I’ve seen the wordless expressions on her face, that tell me just too many of her fears.
And that’s just not fair.
I’d be lying if I didn’t say how much anxiety I feel when I’m at the MS clinic or preparing for an MS event like the Walk on Sunday. I’m anxious because I have not totally come to terms with this diagnosis anything beyond what I have personally experienced. The depth of this disease is not evident until I’m around others with it. And sometimes it takes my breath away. I imagine a likeness to my anxiety to that of a newly diagnosed cancer patient who arrives at their first round of chemo. They expect to lose their hair, develop a pallor complexion and lose weight. But it probably never really feels real until they see those waiting for their own chemo rounds and are on their 4th, 5th, 6th, 10th, and 14th round. Some have hair falling out, some have only tufts remaining and others are wearing scarves or hats to cover their bald heads.
Reality becomes visible. And you are left raw and open. But in spite of that you need to remain warm and loving, cool and collected because you are a mum and your little girl wants to know why you’re crying. Again.
You’ll always hear people say that a parent should never have to bury their child. Same is true for a parent having to be cared for by their child. It should never have to be that way. The parent should always be the parent, the child always the child.
When Steve’s father was very ill with brain cancer and in a palliative state at home and my mother in law required help from Steve lifting and bathing him, I watched and cried over the role reversal. And now I cry at the potential for that very same role reversal in my own home, with my own family.
And so I walk. I walk, I raise money, I nag, pester and plead for donations so that Grace will never have to lose her childhood to MS.
This post is dedicated to all the Gracie's of the world. To Kelly and to Kendra and to all the children that have lost a parent to MS, whether in life or in death.
I walk for you and for me.
Have a most amazing weekend!
from Daphne of General Static
Thank goodness for the postings of a number of bloggers who talked about having had no results from their venoplasty for CCSVI. Because of them, I went to my procedure with eyes wide open and with the attitude that I would be OK with it however it came out. I just had to know. The money was spent the minute I made that decision and I really had nothing to lose from that point on.
It can certainly be disheartening to have no results; mine have been minor enough to cause me to wonder if they are just my imagination. I have no regrets, however and I feel like a pioneer, having been part of the early research. It's a lot of money, yes, but I was spending it to make sure I hadn't just ignored something that I would regret the rest of my life. I might still get some back from insurance and that would definitely be a good thing.
Because I am now five months past the procedure, I'm going to use this post to update you, and myself, on what has happened.
Within 36 hours of the procedure, I realized that 95% of the pretty awful shoulder and neck pain I had been fighting for over two years was gone. I could feel carpet under my feet. My face and scalp were far less numb.
Within a week, most of those symptoms had returned except the neck and shoulder pain - not a great result, but within a month, I was realizing that I could read difficult reports and understand them again. I never thought I had brain fog, but I have to admit that I would just throw my hands up in defeat over those reports and quit--not a good idea for someone with MS who is trying to keep up with various treatments and alternatives!
At the five month mark, I can still read the reports, I still have much-reduced shoulder and neck pain and I've actually bettered my walking time a fraction on the CCSVI-Tracker site. I now can stand, walk around an object 3 meters away, return and sit in 17 seconds. Just 3 months ago that was 24+ seconds. I thought it was a fluke but it happened again this month. Some of the uninitiated will pause at my pride over a 7 second improvement but hey, that's almost 30% better!
I do feel stronger. I can't measure that, but I seem to last longer, feel sharper and more confident in my walking. At the moment my face is again less numb but it does come and go. Nothing else has changed. I still have foot drop, I still have numb toes, I still walk with a cane and use a scooter frequently, but about the venoplasty? I still have absolutely no regrets.
from Marc of Wheelchair Kamikaze
"People come and go, and forget to close the door, and leave their stains and cigarette butts trampled on the floor, and when they do… Remember me, remember me." -Brian Eno
There are several phrases that when heard or uttered can forever change the course of a life. "You're hired", "I'm in with love you", and "I do" are a few of the more common, all imbued with the power to positively alter one's destiny. On the flipside, there's a multitude of words that, when strung together, can have a negative, even dreadful impact. Those of us dealing with serious illness have all heard variations on the same devastating words streaming from a doctor's mouth, something along the lines of, "I'm afraid you have (insert name of illness here)". From the moment those syllables are comprehended, we are suddenly singled out, set apart from the world we inhabited just moments before, the land of the well.
No matter how loved or popular the recipient of such a diagnosis may be, they've now been forced into a new and alien social strata, that of the chronically ill, an exclusive club to which nobody wants to be a member. Though friends and family offer heartfelt and genuine gestures of comfort and sympathy, there is simply no way for them to truly understand the disorientation, fear, and alienation wrought by the verdict recently rendered. The newly minted patient, even if surrounded by a crowd, is left to navigate a frightening new reality in large part alone.
Make no mistake, the support of friends and family is vital to the mental and physical well-being of a newly diagnosed patient, but that moment of diagnosis does serve as a line of demarcation between an old reality that was very likely taken for granted and a new one fraught with uncertainty. This crisis point in a person's life can test old relationships, and unexpectedly offer opportunities to build new ones.
Over the course of a lifetime, there is a natural ebb and flow of individuals entering and exiting a person's world, an ever shifting population of friends and acquaintances that inevitably changes with the passage of time. A precious few of these people take up permanent residence in the timeline of life, and transcend friend to become family. True family is defined more by love than by blood, and I consider myself blessed to count among the innumerable persons I've encountered perhaps half a dozen who I know will be constants for the whole of my life. We may not be in perpetual contact, in fact we may not talk for months at a time, and perhaps not meet in person over stretches lasting years, but I am secure in the knowledge that when push comes to shove, no matter the situation, we'll always be able to pick up just where we left off, our bonds too strong to be broken by the strains of time, distance, or circumstance.
These rare relationships, some of which have spanned decades, are cherished and acknowledged as precious, for I realize they link me not only to people that I hold dear, but also represent a tangible connection to my own past, confirmation that what came before was not merely a dream, but a series of very real experiences that I was lucky enough to share with some special individuals. Though I've only been diagnosed for eight years, at times it's hard to remember a life without illness, a time when I was blissfully ignorant of most things medical. These friends turned family, who are of course deeply sympathetic to and aware of my difficulties, look straight past the fact of my illness to the essence of who I am. To them I will always be the same old Marc, and for that I am forever grateful.
Other friendships from my healthy life have been diminished by my illness, really at no fault of the people involved. Many friendships thrive primarily on a continuing series of shared social experiences, and as my disabilities have mounted and my ability to socialize has become curtailed, the spigot that fueled many of these relationships has been turned off. Phone calls and e-mails are still occasionally exchanged, and halfhearted motions are made at making plans to get together, but they almost never actually come to fruition. That's okay, really, as without an ongoing narrative, some relationships are bound to simply stall, and eventually wither. It's all part of the rhythm of life, the natural order of things.
In this age of the Internet and social networking, it's now quite common to reestablish connections with folks who once populated your world, but were long ago got lost to the ever shifting tides of time. I've found that most of these renewed friendships at first burn brightly with shared memories and updates on current circumstances, but once that initial flame is exhausted, they again recede into a state of benign neglect. A few, though, have turned out to be very happy and lasting reunions, with people for whom I never really lost affection, but only lost touch. It is a real joy to rediscover a misplaced but valued friend, like unearthing a buried treasure.
In all honesty, though, my illness has made me somewhat reticent to pursue some of these Facebook friendships, as I sometimes think I'd rather be remembered as the youthful and healthy me locked in my old friend's memories, and recounting the details of life since my diagnosis hardly makes for a lighthearted exchange of pleasantries. Perhaps this accounts for my almost phobic relationship with Facebook, which I suppose it's time I should just get over. I'm completely open about my illness with the world at large, after all, but somehow the prospect of detailing my saga to certain individuals remains daunting. Though I feel I've handled the emotional upheaval attached to illness quite well, I suppose the pain of my reality lies not too deeply beneath my Wheelchair Kamikaze persona.
Despite the love and support of family and trusted old friends, it's been incredibly important for me to develop relationships with fellow patients, others who simply "get it". As kind and sympathetic as the well people close to us might be, they just haven't lived the situation, and thus don't have the capacity to fully gauge the true measure of being chronically and progressively ill. It's like trying to get a blind man to understand the difference between blue and orange, the complexities are beyond words.
I can't imagine how difficult it must've been for patients dealing with chronic illnesses before the advent of the Internet, how isolated and alone so many must have felt. Soon after my diagnosis I discovered some of the Internet MS forums, and in them found a haven where was able to interact with others dealing with many of the same questions, fears, and emotions that were roiling inside of me. I derived incredible comfort and relief in these virtual worlds, populated by so many who had gone through situations similar to those that now confronted me.
I initially ventured onto these forums seeking only information, never imagining that I might find real friendship in the coldness of the words of strangers on my computer screen. But soon the anonymous screen names of those participating took on the characteristics of the living, breathing human beings behind them, and the catharsis of being able to commune with fellow patients was incredibly therapeutic. Before long it felt like some of my best friends were people I'd never actually met or even talked to. When I did eventually have the opportunity to meet some forum members in person it often felt as if we'd known each other for years, unencumbered by the awkwardness of unfamiliarity that usually accompanies first encounters.
Of course, not every MS patient is going to become a close friend, but I found that the shared emotions of dealing with a serious diagnosis can often strip away much of the artifice and posturing that goes on in every day social interactions, and patient to patient we can often cut right to the chase and dispense with most of the meaningless trivialities that get in the way of establishing the bonds of true friendship. I've developed heartfelt relationships with people I might not otherwise have interacted with, folks in locations and with backgrounds that I might never have crossed paths with or given a chance to without the unfortunate commonality of a shared disease.
When eventually we take our leave of this earth, as we all must, the friends we've made and the people we've touched are perhaps the truest measure of the lives we've led. Despite the hardships imposed by disease, and the impersonal nature of the medical world we've been forced to inhabit, we must never lose sight of our essential humanity, and relish and take joy in our close friends, old and new. Even in this high-tech world of instant messaging, Facebook, and tweets, a pat on the back, some gentle words of kindness, and an earnest gesture of support still convey that most important of human sentiments, genuine affection for those we are lucky enough to call friends.
This concludes the 89th edition of the Carnival.