I pledged, when I began this blog, to create a positive online environment for M.S. patients, for their family members and friends, and for the general public. At the same time, I also promised to be authentic, to be real – like the Velveteen Rabbit. I’ve discovered that it’s difficult to be both at all times. The last thing I want is for a newly diagnosed M.S. patient to wander across Sunshine and Moonlight and derive a false impression of this disease from my writings. Likewise, I don’t want that same person to be scared wit-less like I was upon my initial diagnosis.
Today is my attempt to manage both a positive outlook while being real. It’s been a tough week for me. I can’t deny it. Other than Saturday (when I felt awesome), the five days prior and then yesterday, have been rough ones. It’s difficult to explain what I mean by “rough.” I went to work every day last week. I celebrated Christmas with my step-kids and husband on Saturday evening. I cooked a turkey and a full holiday meal. I finished my shopping and all the necessary wrapping. I completed my Copaxone training and made it through my first two “Liebestrophfchen Days” like an old pro. The way this is written, it sounds like a fabulous Sunshine week, doesn’t it?
This is where the “staying positive” part of my pledge becomes tricky. While I accomplished all of my normal life duties this past week, it’s been a struggle every day to do so. The fatigue that comes with M.S. is something so new for me. It’s almost impossible to describe unless the other person has experienced it firsthand. It’s not just “being tired.” It’s being so drained that walking around a room is exhausting. It’s being so wiped out, that you let your hair dry naturally because you can’t hold your arm up long enough to dry it with a diffuser. It’s opting to not wear make-up because it’s just too much work. It’s screaming “Yes!” before your husband finishes the question: “Do you want me to cook you breakfast?” You hear just the “Do you want me to…” and whatever is going to come next will be a wonderful gift because you don’t have to do it yourself. While I felt fabulous on Saturday, I stayed in bed – off and on – until after 11 on Sunday morning. I literally felt like I was dragging myself through the whole day yesterday.
My days this past week were like roller coasters – feeling great one minute and then feeling certain I wasn’t going to last one more minute in the office the next. Those who know me well know that I hate roller coasters. (Gee, I wonder if it’s because of the vertigo and dizziness issues that I now realize I’ve been struggling through for years). The leg and arm pains and the prickles and tingles that most M.S. patients suffer through have plagued me all week. The burning sensation under the skin of my thighs has kept me from sleeping most nights. The cognitive issues are distracting and annoying if nothing else. I’ve had to barter and trade with my free time. I was hoping to go out with my husband and some of our friends Sunday evening, but chose to stay home instead. I wanted to be sure I was in decent shape for all of our Christmas Eve and Christmas Day festivities. Plus, that would have meant putting on the make-up, drying the hair, and actually getting dressed for the outside world.
That’s a description – an authentic one – of a week in the life of an M.S. patient. Not all M.S. patients are the same, but it provides a good overview. It’s all settling in and becoming real for me now. It was easy to be positive when things weren’t so bad in life. It’s definitely more difficult when faced with the challenge to make it through each and every day. It’s a further challenge to know that this will likely be my life for a very long while; at least until a cure is found. But, I’m up for that challenge!
Despite the roughness and frustration of the week that’s now behind me, my vision is terrific! Didn’t I once say that as long as I could see and remain completely independent, that I could handle the rest of the M.S. symptoms? (Ok, so that was easy when I hadn’t really experienced many of the symptoms yet). I’m enjoying my favorite time of year – the Christmas holiday – equally as much as I have in the past, if not more. I’m surrounded by loving friends and family. My children did something so special for me this year; truly giving me the best Christmas present I’ve received. They researched M.S. and despite being poor teenagers and young adults, bought me something that they hope will help me to feel just a little better. They’ll get their own blog posting in the coming days. Our tables have been full of food and our tummies have been filled. Music and candles and a beautiful glow from the fireplace fill our home.
I’m choosing to only surround myself with positive people so I can become more positive myself – and positive in the most authentic sense. I have never once asked “Why me?” despite several people, now, who have suggested that I must be thinking through that exact question. Nope, sorry. If not me, then whom?
Despite that, I’ve said that I feel like I’m a big fake; that I’m not the Velveteen Rabbit at all. So, my husband and I talked through what being “positive” really means. He explained to me that I don’t have to be happy that I have M.S. Being positive doesn’t directly equate with showing happiness and joy. Positive doesn’t mean walking around with a smile on my face every minute of the day, especially if it’s a fake one. To him, being positive in the face of a life altering disease, is facing it with purpose and determination. It’s researching everything possible about the disease, to find out what to expect, and then developing a plan for dealing with all the possibilities. It’s taking an active role in my health. It’s writing this blog and educating others along the way. It’s being a role model for other M.S. patients who are also struggling to remain positive –and hopeful – each and every day. He also gently reminded me that my strength will come from keeping things in perspective.
Even during my worst Moonlight moments, I’m living the holiday dream. There are thousands of people, without M.S., who are living in boxes this Christmas. They are freezing in the snow, are alone, and are hungry. They are feeling unloved and unwanted.
So, yes, I have M.S. and yes, it’s been full out Moonlight-madness this week. But, I really am living the Christmas dream. That’s one thing that I’m positive about.
Dear Kim,
Merry Christmas.
I want you to know that it is sometimes very difficult for anyone to even know what to say here.
Silence sometimes has more eloquence than words. But in a blog, silence can also echo that no one is there; no one is listening. You need to know that is not true.
Many are listening. Many hurt. Moonlight takes precedence since we are at the time of year wnen nights are longest. Things change.
Your pledge caught my eye. Few human beings can keep a pledge if they even mean what they say. I suspect you genuinely mean your pledge toward positivity; but what if there was ever a slip in that pledge at any point in the rest of your life? Everyone in the football team pledges to win. Sometimes the other team gets the glory instead.
Go easy on Kim if the pledge gets a dent.
The Velveteen Rabbit caught my eye too. I read it often to both of my daughters. I did not have to be authentic. My daughters did not have to be authentic. The Rabbit was not real. Sometimes we read into this 80-some year old book, and see things that are not there. The rabbit had but one thing to do. Nothing else mattered. The rabbit was a fake but could become real by doing one thing. AND, the rabbit was not held accountable with checkmarks on the ledger to see if performance was done. Nope, not at all.
The owner loved the rabbit.
RECEIVING the love of the owner made the rabbit real.
There was no action required except to receive love.
WE think we have to do something to receive love.
Be wealthy.
Have the perfect career.
Have the perfect family.
Be blond or redhead.
Tall.
Thin.
Be gorgeous to look at.
Perform acts of kindness.
—–(man is that a selfish way to get love, eh? An ulterior motive when you glimpse deeply)
There are many ways we try to get love. We become what we are not, and become what we suspect the other party wants, so that THEY will love us. Is that not the essence of dating these days?
But what the person, duped, then loves is NOT us. They love what we became, that now appeals to them. In doing any of the above to obtain love, we end up losers because we are loved for being what we are not. We is rabbits!!!
The owner of the Velvetteen Rabbit loved the Velveteen Rabbit (I thought it was Velveeta cheese when I was a kid, so even the duped Danny loved the rabbit).
That owner loved what was NOT rich, beautiful, had NOT made a perfect career choice, did NOT have a great family, and any other test you care to set up.
The owner loved the rabbit because the owner loved the rabbit. All the rabbit had to do to become real was be loved. So simple.
So hard to do.
Many have pledged to a spouse to bear any burden, pay any price, no…wait…that was John Kennedy Inaugural. Skip that.
Many get married and make a pledge. They promise faithfulness and forsake all others and stay as one;
in good times and in bad; in sickness and in health; for richer for poorer; etc. No wonder we perform to maintain the love.
Your husband has gone way up in credibility in my view. I know way too many who are by your side when things are cool, money flows, no one is sick, and the like.
Change one variable, job loss and bankruptcy; car accident and disfigured; a coworker had sex with em; and the spouse IS GONE.
The pledge was actually only made for the good stuff.
Your man is doing a hell of a job and I like him for his obvious character.
You penned this paragraph too:
“Even during my worst Moonlight moments, I’m living the holiday dream. There are thousands of people, without M.S., who are living in boxes this Christmas. They are freezing in the snow, are alone, and are hungry. They are feeling unloved and unwanted”
——Kim Fabrizio
I have to tell you the truth, Kim. When I read that, I had to stop. Walk away. Come back and reread again. Now, it is your turn.
Stop what you are doing and reread that paragraph. Go on!
I’ll wait……………………………………………………….
The OWNER of all of His children wants to love them and make them real in the process. They are a maurading bunch of toys all over His planet. but in loving them, He makes them real.
They need only BE loved to be real.
Some are hard to reach, even for Him.
The lonely.
The hungry.
The homeless.
And millions of others.
When I went through a very difficult time, I was unapproachable to be made real. Then, Hurricane Andrew came through Florida and left most folks with no food, water, home, some had no family, jobs were gone for good as whole companies blew away. It looked bad.
I thought on that, one night, and asked myself “Could there be anyone going through what I am going through….and going through Hurricane Andrew simultaneously too?”.
It scared the hell out of me for I knew I could take no more than I was carrying. Same for them in Florida, and yet, it was only beginning there. Somewhere in Florida was someone going through all I was going through….and doing it all WITH a Hurricane Big One added.
So here we have Kim Fabrizio with MS and WHAT is her concern??
Hungry people.
Lonely people – I will write on that one day, a true story
Homeless
Unwanted.
Some people are very hard to reach, for God to love em enough to make em velveteen real in the process.
And I wondered if He chose a young woman named Kim Fabrizio to begin reaching out with His love to the hardest of His cases to show them THEY ARE LOVED and HE thinks THEY ARE REAL.
His birthday is not until tomorrow and you already gave Him His gift. His trust in you was well placed.
Give your husband a hug. He is already REAL.
Give yourself a hug. You are REAL too.
God bless you abundantly,
as you remain more and more a blessing to His children.
You are not alone.
Best regards,
Danny Lucas
Christmas Blessing
USA
Home of the Free,
Because of the Brave
Your description of fatigue is a good one. Thanks for being on the same path as me: trying to find the authentic sunny side of MS; trying NOT to be Pollyanna but not succumb to a Pity Party either. It’s nice to not feel so alone. Merry Christmas.