We are ready to face our challenges with a creative spirit.
Never give up. Never let things out of your control dictate who you are.” Unknown
BE A PART OF THIS NEW ART AS HEALING MOVEMENT!
Art as healing is about YOUR process. Sure, I give you guidance and tools to help you find your own creative voice. We journal, we paste, we paint, draw, stencil and create…and if you don’t want to do it my way…then okay! Do it your way…and still join the conversation! MS Ribbon is really a place where your creativity can blossom and your feelings about MS can come to the surface…In a safe, friendly environment. Pop on over and try a free mini course…see how this works. Nothing to lose but fun, companionship and inspiration – and if you are battling with the demons of MS pain, suffering and sadness, we get serious about that too.
This beautiful painting was made by one of my students as a tribute to me and my MS journey.Thank you Nour Al-Tajer
Everyone latches on to that saying, I HAVE MS BUT IT DOESN’T HAVE ME and it is a good, catchy slogan…but I like to think I have MS and I have it by the throat! I need that go get’um non-stop hup two three four forward march feeling, to at times, even propel myself out of bed. But here is the truth of it. No matter how hard it might be to get around or what paraphenalia I have to take with me…cane, medicine, needles, etc. It is worth every minute of being out there in the world (hint about my HUGE project!!!)
I am not shy about my MS. I know a lot of people who don’t want to tell others about their condition. And if it is work related then I understand that, but I have run across other MSers who somehow feel ashamed to say they have a chronic illness. When I need my cane, and that isn’t all the time, I use that opportunity to tell people why I have it. Of course I am one of those people who gets into conversations with random folks at the grocery or the bus stop, but one person at a time gets to see a new face of MS.
And on the days when I look like everybody else, I still let students, and others who I interact with for a long period of time, know what I am dealing with. They might see a wobble in my walk, or a slur in my speech…They could notice the word that gets stuck in my head and the hands that tremble. It doesn’t happen everyday, but when it does, I think its is better to just tell folks what it is.
And by the way, when I do say I have MS, I am always blown away by the number of people who are related to someone who has it. But that my friends, is a subject for another day, isn’t it?
My big dream (at least one of them) has been to create art and writing workshops for people with MS – and what I found out is that if I am going to do this, I cannot wait and I have to be prepared – sometimes MS brings out the best in us or forces us to be our best. I need to plan ahead, and not fly by the seat of my britches. …And, as you ponder your big dreams this week, remember life offers no guarantees, so if you have something you really seriously want to do…please do as I say, not as I sometimes do…get it done…NOW. Make plans now. Take action now.
We can accomplish so much, we can achieve our dreams, but as MSers we do need to adjust HOW we get things done.
GET THE NEW MS RIBBON DIARY (coming soon)
The MS Ribbon Diary is a FREE gift, and an invaluable tool that allows you to record your physical and emotional health each day of the month. Focus on the ‘word of the day’ and make the most of your life even though you live with challenges! Have you ever been to the doctor for a regular visit and totally forgotten all the symptoms you had for the past few weeks? Nothing like seeing that white coat to make your memory fail you! The MS Ribbon Diary is a free download that you can print – keep a record of what you feel like everyday. It works for me and it is based on my own system.
Why MS RIBBON?
Although nobody actually has the nerve to say it to me, I am sure there are plenty of folks who are wondering why I always have to be talking about MS. So I figured it was time to make things crystal clear…about the whys, and the what fors.
There were years, between 1999 and 2004 when I really didn’t have any problems at all. I thought I had been cured…I can recall the day the change took place…It was in Barcelona, just after visiting Lourdes, France (another story altogether)
But like many people with the beginning stages of a chronic illness I was probably having relapses and remissions.
Which meant that for 5 solid years I was able to live my life without the worry of fatigue, pain, or that incredible ‘weird’ feeling that accompanies this disease. And for those of you who don’t have chronic disease…don’t just gloss over the words PAIN-FATIGUE-WEIRD and say to yourselves, “But everyone has pain and fatigue, in fact I am very tired right now!”
Trust me, and I really do mean I hope you will have to trust me for the rest of your lives, I have had YOUR fatigue and pain, and I have had the new fatigue and pain that comes with chronic illness. THEY DO NOT DESERVE TO BE THE SAME WORDS.
THEY ARE NOT THE SAME THING. They are as related as a dog is to a canary.
Just keep that image in mind the next time someone with MS tells you she is fatigued.
Anyway, that is the background – the chronology. And though it doesn’t sound so terrible, it adds up to more than 25 years of my life. More than a quarter of a century has been involved with either trying to get a diagnosis, or living WITH the diagnosis I have.
So what, you say? There are people with Cancer, way worse than me, right? And some people were born with disability, right? Yes …all true.
And I only have an invisible, inconvenient disease.
You can’t pick me out of a crowd most of the time and say…”oh poor thing she has MS.” You can’t do that with the majority of people with this disease…in the beginning.
MS can strike us down from running 10 miles a day to sitting in a wheelchair all within 24 hours. It can come with a vengeance and go into hiding just as rapidly or, it can come and not go away at all.