Our Radiant Beamer

As Lightly Crunchy pointed out, May is MS Awareness Month. I perhaps should have known this but I and my family are still new to this. Our daughter/sister/niece/cousin/fiance was diagnosed a year ago. I wrote an essay, which I might share at some point, titled “A Helper, A Dreamer and a Radiant Beamer”. It is about my three daughters and Jamie is the Radiant Beamer, and Jamie has MS. We don’t know where this road will take us and unknowns make us fearful and we push them aside.

Jamie is facing this bravely though we know of the fear and the anxiety that lies beneath. I am also still trying to find my way – I want to wave my Mother’s Wand and make it all go away … I should be able to, but I can’t. MS has already affected our family relationships – I do think we are closer, newly aware of the fragility of our lives and dreams, and more actively supportive of each other.

Treatment includes a daily injection, which for some is painful.  Research is getting closer to an oral treatment.  For some reason we in Canada have one of the highest rates of multiple sclerosis in the world and it is the most common neurological disease affecting young adults in Canada. Every day, three more people in Canada are diagnosed with MS. To learn more about MS or to donate I have found these sites:

In Canada – MS Society of Canada
In the US – American MS Society 
In Britain – British MS Society
In Australia – MS Australia
In India – MS Society of India

On May 30, acknowledge World MS Day.

The Canadian campaign has several events planned for May:

  • On May 10-12, buy a carnation to support the MS Carnation Campaign.
  • Get an oil change at Mr. Lube on May 12, and $5 will be donated to the MS Society.
  • On May 30, Niagara Falls will be lit red to commemorate World MS Day.
  • Cities across the country will be hosting MS walks – check your local chapter

For those of us who don’t have MS but want to understand more I found this at A Short in the Cord – thank you to Lightly Crunchy for directing me to it.

Have you ever had your leg fall asleep? Then you are familiar with that “pins and needles” feeling. It usually passes once circulation is restored to the leg. Now imagine having that “pins and needles” feeling in both legs constantly.

Have you ever had your picture taken and accidentally looked at the flashbulb as the flash went off? Then you are familiar with that “burned out” spot in your eyes. It usually clears up in a fairly short period of time. Now imagine having that burned out spot grow larger and larger until it covers your entire visual field. Then imagine that spot staying with you for months.

Have you ever stood up too quickly and felt dizzy, disoriented? Maybe the room spins? Then you are familiar with vertigo or lightheadedness. It usually passes within a few minutes. Now imagine having that vertigo all day and all night.

Have you ever over-exercised, maybe too much hard work in the garden or too many weekend-sports games, and felt shin splints or sore muscles the next day or two? Then you are familiar with the discomfort of really tight and sore muscles, or “spasticity.” It usually passes in a few days and is relieved with aspirin and BenGay. Now imagine having spasticity in your legs constantly regardless of your physical activity.

Have you ever pulled an “all-nighter,” maybe driving all night or staying up to watch a game that runs into triple overtime or to study for finals? Have you felt really tired the next day, a little weak and unable to think clearly and no amount of coffee will help you? Then you are familiar with fatigue. It usually passes after a day or two of catching up on sleep. Now imagine having that type of fatigue constantly.

Have you ever had a little too much to drink? Maybe had some parts of your body go numb? Maybe been a little dizzy? Maybe a little uncoordinated, tripping over things and not being able to hold your glass very well? Maybe your speech got slurred? Maybe you couldn’t see or think straight? It usually passes when you sober up. Now imagine being like that all the time, without the pleasure of a glass of wine.

If you can imagine all of these things, then you can imagine what it feels like to have just a few of the symptoms of MS. What I described are only some of the symptoms that I have experienced, and I have not experienced the worst that MS has to offer a victim. Can you imagine even worse symptoms?

Now, can you imagine a day when we won’t need to have this conversation? Can you imagine a day when there is cure for MS? Can you imagine a day when there is treatment to reverse the damage that MS has already done? I can. That’s what gives me hope.

See also: |
All Things Boys

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22 thoughts on “Our Radiant Beamer

  1. Reblogged this on Lucid Gypsy and commented:
    MS is a horrid disease. We have all heard of it but I doubt that everyone knows how it affects the lives of sufferers. This post by Lynne about her daughter is both moving and informative, please have a read.

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  2. I am so sorry Lynne! This came on top of the news that two of my (11 year old) grandson’s classmates have been diagnosed with Hodgkin’s disease and Leukemia! Life is unfair! I hope and pray that Jamie and these two kids react positively to treatment. Take care.

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    1. Thank you Madhu. A difficulty with meds for MS is that it is all on faith. The purpose of the meds is to to reduce the number of episodes, thus slowing down the progression of the disorder; meds won’t block all episodes. So you can’t tell if the meds are working, or how well they are working. Which is probably why more than 50% of patients drop their meds within two years. Taking a painful daily injection and not knowing the rewards has to be very difficult.

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  3. Lynne, I’m so sorry to hear about your daughter. I will add her to my prayer list that she finds success in the treatments available. Thank you so much for the link back to my post. I will add this one to mine as well!

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  4. Thank you for posting this. One of my friends back home was diagnosed with MS several years ago. I was not aware that May 30th was an awareness day and I will keep it in mind. I wish you and your family the best of luck. And it is great that you have each other.

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  5. There are far too many afflictions without effective treatments. Illnesses that can bring more closeness with loved ones, more joy in everyday things, yet they can also tear the world apart and bring despair. There is no rhyme or reason, there is only taking it one day at a time and hope.

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