Addressing the Scariest Question: Is Multiple Sclerosis Fatal?
We all face multiple sclerosis (MS). Some of us, literally, in the face.
When I was a kid, I remember my brothers sitting in the back of the car, making silly faces at each other. My granddad would tell us jokingly, “If you make that face too often, you’re going to get stuck that way.”
Not yet savvy to the concept of dry sarcasm, I believed him. I’d look in the mirror, searching for signs of permanent distortions, afraid to move any muscle in a bad direction that might lead to permanent weirdness.
It Got Stuck That Way
Forty years later, my face inexplicably scrunched up into itself and remained that way. For two days, I waited for the ugly and extremely uncomfortable mess of the right side of my face to relax back to normal. It did not.
Wanting to rule out a stroke, my GP sent me to the ER. I nonchalantly drove myself to the hospital, thinking there was little more wrong than perhaps TMJ or a severe muscle spasm.
Three hours later, after a precautionary MRI and a few other tests, I was confident I’d be released as soon as the doctor returned. My husband and I figured I would be given a prescription for a muscle relaxer or something similar.
Life Stood Still
As the words from the attending doctor took hold, thoughts of my own mortality went from the shunned and distant shadows of my psyche to being shockingly thrust onto center stage.
I had a large lesion on my brain. The doctor could not be sure, but one of his suspicions was that it could be MS.
The stunned look on my husband’s face was too much to bear. We were newlyweds.
My first thought was “please no, don’t do this to him.” Randy’s mom had died from MS just before our wedding.
She had battled the worst case of MS that can possibly afflict a person. For 27 agonizing years, MS stole her ability to move, feed herself or communicate any more than ‘indicating’ with her beautiful eyes.
The second and last time I got to see her was in hospice on her final day. Now I looked into my husband’s eyes, terrified over what could well be my own agonizing death sentence.
For the most part, MS is not known as a ‘fatal’ disease. The thing is, we all know it is possible.
We have all heard stories or have known someone who has died from MS complications. This is an all too real part of coping with MS and all it entails.
We Didn’t Ask for This Information
No one knows how or when they are going to die, but for those of us with diseases such as MS, we have inescapable factors that may well determine how our lives might end.
This knowledge, I believe, puts us on bit of a different plane than your average healthy person. We have actual statistics on what exactly might lead to our eventual demise. Indeed, MS complications are harsh realities linked to our own mortalities and we somehow have to learn to live with them.
People Die With MS, Not From It
The National Multiple Sclerosis Society (NMSS) indicates that most people are listed as having died from accompanying illnesses. MS is rarely indicated as a primary or even secondary cause of death.
So, what does dying of MS complications actually mean?
People with a more severe course of MS may die from:
- Pulmonary involvement. Just as muscles in the arms and legs can continue to increase in weakness as MS progresses, so can ventilator muscles in advanced MS. Respiratory insufficiency from weakened diaphragm and accessory muscles that support respiration can be the cause of death in MS.
- Sepsis. A deadly bacterial infection of the whole body brought on by bacteria entering through recurrent or severe infections, such as bedsores, urinary tract infections and pneumonia.
- Aspiration pneumonia. Swallowing problems, or dysphagia, can deposit food or liquid into the lungs. The body will fight off these deposits resulting in inflammation and fluid accumulation. This can be fatal.
- Depression. Though treatable, depression is considerably more common and dangerous for MSers than for those with other chronic illnesses. NMSS states, “one study found that the risk of suicide was 7.5 times higher among persons with MS than the general population.”
NOTE: If you are having thoughts about harming yourself or feel you are at risk of hurting yourself or someone else, call the National Crisis Hotline at 1-800-273-TALK (8255) or text "ANSWER" to 839863.
Knowledge, However Unpleasant, Is Power
Fear of the unknown, as in what MS might do to me, is frightening. Facing the unknown and learning about what exactly it is I am afraid of certainly justifies those fears.
At least now my runaway imagination can no longer fuel my psyche with frantic, unrealistic scenarios. The realities are harsh, but my projections as to what may become my fate, are at least now anchored in reality.
Worry Is a Waste of Imagination
We have no idea and no control over where the roulette wheel of this blasted disease will rest. What we can control is being truly present in the moment.
We must live for what is right now. If we strive to live our lives as fully and unabashedly as we are able, any fear of the future will have less room to invade our imagination.
The Good China
A bit of fear can be a catalyst for living a richer life. I think this is similar to what my mom says is one of the brighter sides of her getting older.
She instinctively is living for today much more in her 70s than she ever did when she was younger. She is throwing a bit of her life’s rulebook out the window and she’s literally giggling over it.
For the first time in decades, momma is using the good china on a daily basis. She loves the way it looks on the table and enjoys daily dinners more than she has in years.
She wonders why, for all these years, it was that she simply knew it was forbidden to use these lovely plates for anything but a special occasion. In my 49 years, I don’t remember us ever having that special occasion.
My mom has discovered that breaking the special occasion rule does not mean the good-china police will, at any minute, break down her door. Incidentally, the same goes for her diamond earrings — she now wears them whenever she wants.
My mom enjoys these little shifts she has chosen to make in her life. They make her days just a bit richer. I could not be more proud of my rule-busting mom.
We can all take on our own form of a rule-busting attitude toward the things our playful spirits (or inner child, if you will) are begging us to try. We can ask ourselves when we doubt, “What is the worst that can happen?”
With all the things we have to contend with as MSers, we deserve to give our souls a break. We can find those small things that make our days just a little better, any day of the week, no matter how our MS is doing. They in turn, start to add up and life and quite possibly our outlook towards it, becomes more rewarding.