My Answers to Basic ALS Questions
I have ALS. That awareness has prompted a series of rapid-fire questions.
While many of us would describe existence as being comprised of multiple chapters, I now have two distinctly different lives. Prior to ALS, I had led an unremarkable life largely characterized by good fortune. Some of my successes turned out better than they should have, and many of my mistakes had results not near as bad as could reasonably be expected. Work challenged me appropriately and rewarded me fairly. My leisure time was filled with enough activity, in the form of travel, cultural sampling, golf, and basketball — a fulfilling balance was maintained. My health — as evidenced by my weight, blood pressure, and critical blood analysis — predicted many robust years ahead.
Twelve years ago this week, I was ushered into my second existence, persona non grata, with the following words:
“I am afraid that you have ALS.”
Say what?
The words were an assassin’s bullet, causing my mind to explode.
No more walking, no more talking, unable to carry my own load.
Until death do us part, l became its minion,
Was the unanimous medical opinion.
What will its effects be on my body and mind?
There are no dull days when the prior breath may be my best.
Finding safety in life’s scaling became my constant quest.
My body, once my shrine, now a prison with ever-shrinking walls.
But my mind, once finite, now lets me roam an endless maze of halls.
Sleep, once an abstract master, became a colleague, my dearest reality.
A reminder of who I was, and foreteller of the healing yet to be.
How? Why? What did I do wrong?
I cursed the world, screamed at God, drank a bit, and cried a lot.
Perhaps I have that backward, my memory serves me not.
I sought wisdom from the scholars, a course of action from my docs.
All answers were defeating, no keys to open the many locks.
The confounding nature of the ailment is that it’s an evil mystery.
Not a single felon, but a cowardly band daring to terrorize me.
Shall I just give up?
In time there came acceptance, a softening of my view on life.
Aware of my body’s death arc, but pledging no spiritual strife.
With crystal clarity, I realized that abject surrender wasn’t right.
Vowing to savor the journey, not rue the destination, I would fight.
Are there essential components in the battle?
The trick is how to thwart an adversary chosen special for one man.
Disarming a stealth combo of factors calls for a highly daunting plan.
But “hope is the thing with feathers” a famous poet once said.
I surround myself in “feathers,” letting them flourish and spread.
Not content to be the sole donor to my feathery array.
Adding hope, not pity, from others yields a more potent bouquet.
What perspective is to be had?
I put the event behind me, chose carefully my ensuing path.
Selecting healthy, productive ways to channel all-consuming wrath.
Know the enemy, what may weaken or slow its progress.
Time gained, and well spent, is a true measure of my success.
What is my, post-ALS, purpose?
Every day that I rise, I’m prepared to do battle; attack, never hide.
For that may be my victory day, with new ammunition at my side.
Small and large, I savor all moments, cherish every circumstance.
Believing with pure conviction that I still have a puncher’s chance.
***
Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to ALS.
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Comments
Mary Williford
That is how feel after having all kind of test.But I do no that has I took the spinal tap.I was not has bad with This ALS has I became after the Spinal Tap put me in it farther.The Dr.cab say what they want but I no it did
Randy Overholtzer
Has anyone done research on pain management with upper Doral cervical injections and spinal tap as a cause of ALS? It's funny, when I talk to people with ALS they had injections done!
Patricia Riascos
I always enjoy your writings Rick. This column expresses exactly what I think most of us has gone through, described in an elegant prose. I love the part about "Hope being the thing with feathers". I don't know if I will ever grow those feathers, I admire those who do. Maybe scaling would be a better word resulting from my forced adjustments.
I try not to think of what is coming, I just do today. Maybe I have the ostrich approach.
I imagine you can see my email, if I could I would like to ask you some questions. No problem if you prefer that I don't.
Rick Jobus
Pat, my email is [email protected]
Lorri Dennis-Stephenson
I can’t fathom 13 years post diagnosis. My sister passed barely two years after diagnosis.
Dave Reckonin
13 years...?
What a slow-progression ALS that is. My pALS only lasted 26 months from diagnosis.
Contrary to what Einstein said,God clearly does play dice with our lives.
He's highly discriminatory, Rick, don't you agree.
Of course if we just imagine for a moment that ALS is just DNA/genes going crazy in different ways in different people we don't have to fathom out the God & Son Inc thing, and everything makes perfect sense.
Aaron Knobloch
dave. Contrary to what Einstein said,God clearly does play dice with our lives.
with all due respect. do you really believe in a deity who, just for fun, visits disease upon so many people? i just don't understand how you can ascribe such base human characteristics to the Prime Mover, to the Prime Creator of everything. what you say in your comment, very strongly implies that there is no purpose to creation, to life, that all that happens in the universe is nothing more than an accident.
well then let's look at probability. let's look at something simple, as opposed to life itself. let's take a crackerjack surprise or, if i can ramp it up a notch or two, the simplest playmobile set. if you take all the pieces & tossed them in the air, how many tosses would it take till they come down properly assembled? 10,50, 10,000,000,000? i don't think any intelligent person would believe such a thing is even possible let alone, probable. yet you choose to believe that everything that happens in the cosmos is nothing more than an accident.
but, hey, if that helps you get through the day, go for it.
throughthatvalley
Brillant writing. ALS can do whatever it wants to the body, it doesn't take away the poetry inside one's mind.
Wim De Croo
Nothing is wrong with hope, but please do stay realistic. We are dying, yes like any other human being, but most of the time, far to early and the physical quality of our remaining life is a pain in the ass.
I do prefer to live without any hope, instead of false hope like most of the cancer patients...
I don't hope for a cure but I do hope to be lucky. The same for all of you.
And no, there is no God to help, but if it helps for you, go for it.
Jon Carlin
Has anyone heard of a connection between ALS and having taken the prescription drug Levaquin, a strong antibiotic?
Aaron Knobloch
hi rick,
my name is aaron. i also have als. 1st symptoms presented in late summer 2008, diagnosis 4th of april, 2011.
i've never encountered writing as expressive & eloquent, yet so down to earth, as yours. i used to hate sleep. "Sleep, once an abstract master, became a colleague, my dearest reality," so accurately expresses the way i feel about it today.
i try to read as much of your writings as i can. your 2
"Village" pieces were outstanding. thank you so much.
Rick Jobus
Thank you Aaron.
margaret thompson
Beautifully written, my 50 year old daughter was diagnosed christmas 2017 and died sept. 29th it progressed so quickly...frontal damage caused inability to talk and eat...slowly her fear left her as she was unable to laugh or cry..or be emotional in any way, almost a blessing.. But boy she could walk!A couple of times she took off and we couldn't find her....This disease is devastating and I hope they find a cure soon for you.....My daughter was of above ave. intelligent and was health conscious, only ate organic food. did not smoke.They have to find out what causes this..She did live with her phone and slept with her phone...????
Paul Lyons
Rick,
Thank you for your inspiration! I was diagnosed on 1/23/18 and am still learning how to cope. I applaud your positive attitude.
aria
thank you for this.
i don't have als but my friend was recently diagnosed.
i feel you rick, are a real superhero.
like jesus, you bear our burdens and suffer for all of us.
because of the people who suffered before you, we are getting closer to conquer this disease.
but not just als. every sickness teaches us about ourselves and how to cure all other ailments.
Whatever illness someone has, they fight for us all-because we will all eventually get sick from cancer, heart disease, diabetes,AIDS, etc.
Rick, you are a David against a Goliath. Never forget who won that battle! And he won it for the town.
Thank you. You are a hero.
I know each day is a battle but just keep breathing, discovering things that work AND things that don't and we can do this. We will find a cure.
you know the name "ted harada" right Rick?
My love to you!!!!!
Rick Jobus
Thank you for the overly generous comments. Of course I know of Ted. If I can be of any assistance to your friend, I can be found on facebook.
Kim Halastra
Hi Rick, I have had symptoms all my life....tripping, weak hands in morning. Had to walk w assistance sincec2008. Symptoms much more like hsp. On my 3rd emg it was decided last week that I have als.
The emg was horrible w med students doing 3 at once. Then they left me! Janitor helped me out. No explanation or even questions were allowed. I did get screamed at "Swallow" & she'd turn her head & miss it. If I had not asked for last person to pass my w/c I might've been there all night. Long story short I guess I am at least 11 years in. Thanks for listening.
Rick Jobus
Kim, I am so very sorry to learn of your diagnosis.If you ever want to commiserate, compare notes, or just chat, feel free to reach out,