Part 3: When Irony Roars
The irony of my ALS diagnosis was staggering. I couldn’t help but think of the cruel twist of fate my ALS would have on my husband.
Right now I had a different ~ kettle of fish ~ needing my attention. Understandably, people were forever asking me if the doctors knew yet what was causing my imbalance. Now that I was given the irrefutable diagnosis of ALS, Lou Gehrig’s Disease, it would be a cold day in Wheaton, before I was going to let the world in on my future.
So what do I say ~ when people ask?
Most people had never even heard of Amyotrophic Lateral Sclerosis and that was fine with me. I didn’t want them Googling it and feeling sorry for me. This was before the summer of 2014, when the Ice Bucket Challenge took the world by storm and took away much of the burden of explaining what you are dealing with.
The easiest thing would be to continue telling people what I’ve been telling them for the past three, long, years: the doctors still don’t know.
My husband’s mother Genevieve had a debilitating stroke in her 70’s leaving her permanently in a wheelchair, one year after her husband, Ted retired. He would be her sole care-giver for the next three years, until he passed. My lovely, inside and out mother-in-law sat in that wheelchair 10 long years. My future will require “wheelchair time” too, only I’m 49.
Do you see the irony here? My husband and I will be a repeat of his parents. Our lives would mirror his parent’s lives, he will be his dad and I will be his mom. I have a debilitating disease and my husband will be my care-giver.
Well, guess what ~ I don’t want a care-giver ~ how’s that for starters? I don’t want to have to ask for help, I was made to be the help-ER for heaven’s sake, not the help-EE.Why can’t I have something that doesn’t render me so desperately help-LESS?
Why can’t I be like Bette Davis, in the 1939 melodrama Dark Victory? Bette’s character relocates to the Vermont countryside after receiving her fatal diagnosis, and she exits quietly into the sunset.
There is nothing ~ graceful ~ or ~ private ~ about ALS.
ALS is not just a diagnosis, it’s a lifestyle. Anyone with eyes and ears can tell something is woefully wrong with you. ALS is the teacher you never wanted. She’s brutal. She strips away the ordinary; the casual walk across the room, opening the door for your 80 year old mother, telling the waiter you’ll have the curly fries instead of the side salad. Even getting dressed can sometimes feel like you’ve just finished Riverdance.
Then God showed me I could be ~ grace ~ filled.
God is good like that. Grace~filled has a beauty all of its own. He would give me the grace I needed to navigate my way thru this quagmire of crazy. I had to let go of what I wanted and trust in God’s goodness and grace, completely.
What I could not let go of was why my family had to be dragged into this? Why can’t it just be me, God? My husband saw the toll it took on his father, taking care of his mother for those three long years. Now he’s looking at the same future as his father’s.
You gave me a servant’s heart God, remember? You gave me a servant’s heart and I loved it, thank you, 1,000 times thank you! Remember that old adage ’Tis better to give than receive’ 100% it is. And now you’re breaking and taking away my servant’s heart?
It was going to take from here to eternity for me to come around to this ~ radical way of living ~ God was asking of me. He didn’t really ask me though, He put it out there and He let me decide for myself, how I would play out this new chapter of mine. It didn’t have to define me, but somehow I had to make peace with my ALS-self.
I would ~ walk closer with God ~ He would lead the way so I didn’t need to figure everything out on my own. He’s good like that.
I would ~ learn a new kind of grateful ~ no more taking movement and my independence for granted.
I would ~ learn asking for help ~ is not always about me. I didn’t have to like it, (still don’t) but it has shown me some of the most beautiful and loving sides of people, including strangers who then became friends, that I would have otherwise missed. I love their servant’s hearts.
ALS needed to become a bigger, more open part of my life, if the two of us were ever going to get along.
In time I would ~ do my homework ~ with a whole new perspective. Instead of turning away from all things ALS, I would get involved and see where it leads.
I’m grateful I was the one diagnosed with ALS and not not a family member ~ thank you God.
There are people who have never had one good day, I’ve had more than my share ~ thank you God.
There are families that have Inherited Familial ALS, mine doesn’t ~ thank you God.
I have the best family, friends and neighbors, I want for nothing ~ thank you God.
My progression has been slow ~ thank you God.
ALS has a surprisingly good sense of humor and we laugh a lot ~ thank you God.
My deep love and abiding faith in You has never been a struggle for me ~ thank you God.
Looking back, there were no coincidences. I now saw how God had been preparing us, my husband, my daughters, myself, for our own good/hard story.
My husband’s parents, Genevieve and Ted, when they should have been enjoying their golden years, were stopped dead in their tracks with Gen’s stroke. They moved half way across the country, from Oakland, California to Naperville, Illinois, to be near their children because they needed their help.
Their story became our stories. God could not have given us two finer examples than Genevieve and Ted on how to live a life they never would have chosen, graciously.
Now that my diagnosis was confirmed, we shifted our focus to searching for new therapies, new treatments, off label medications, anything new we could get our hands on that offered hope.
Slowly life settled into a new kind of normal in the years that followed with physical therapy and exercising taking center stage. I was swimming twice a week with a physical therapist and working out in our basement which now resembled a gym.
Whatever it took, my husband was 100% behind anything that helped me stay strong and kept me moving. I was still driving, still had loads of energy, still keeping my diagnosis on a need to know basis.
Yes, the irony here is outrageous but God’s loving hands in my life is more so. I may not understand the road, but I trust the One who walks it with me.
Part 2: One Small Sentence
Our last call to the diner involved a general neurologist and ~ not leading the witness. ~
In every other neurology appointment, we informed the doctors on where I’ve been, what was discussed and brought copies of test results, etc. This appointment would be very different. I would explain my symptoms, how long I’ve had them and then sit back. Nothing more. Nada. We’d let the doctor arrive at his own conclusion without being swayed by other opinions.
My doctor friend Col decided this was the plan of action we would take and I couldn’t have agreed more. This was a fabulous idea and I couldn’t wait for the appointment to get started. Today was going to be a very good day!
I’d walk into the examination room, get checked out and answer questions. This neurologist would finally see ~ what the others could not! He would give a definitive diagnosis, (preferably nothing too debilitating), then we could get the ball rolling with a treatment plan and/or cure before my symptoms progressed any further. Afterwards Col and I would have dinner downtown with our dear friend Nora, who worked nearby. We would probably dine el fresco since it was usually a gorgeous summertime day in the Windy City.
The ~ unsuspecting neurologist ~ walked in, asked me some questions, tested my reflexes, watched me walk, and said “I’m going to send in another doctor to see you,” all under 15 minutes. Wow, this was a new record, every other neurology appointment lasted a minimum of 1 - 2 hours or longer.
Two minutes, later the ~ other doctor ~ walked in, introduced himself and asked me the same questions the first doctor asked. This doctor is very personable and chatty and all the while he’s making small talk and testing my reflexes ~ I fail to notice ~ the ALS letters on his lab coat. For the life of me, I don’t know how.
It wasn’t until the small talk stopped and the doctor turned and said YOU HAVE ALS, that those 3 terrible letters jumped out at me. I heard my husband say “So, you’re telling me what my wife has is something like catching lightening in a bottle?” “Yes.” Like I’ve been saying, what are the odds?
The doctor kept talking but I stopped listening. I could not pull my eyes off of those terrible letters on his lab coat. My brain was like the ticker tape at the bottom of a news channel, no treatment, no cure, no remission. That was the crawl that was stuck on repeat inside my head. I walked into that room positive I would leave with a hopeful, treatable condition. A new lease on life after being on hold for three years. Instead, ALS slammed the door shut on my dreams.
“How long?” I asked and the doctor said “could be 3 years, could be 20” I don’t remember what, if anything, he said after that, because I’m pretty sure I was on my way to having an out of body experience.
You know how when people ask if you remember where you were when we landed on the moon and you remember ~ e x a c t l y ~ where you were? Well this was my moon landing, just as momentous, only no celebrations.
One small sentence for the neurologist. One giant sentence, of a different kind, for me.
Well, we got half of what we came for, a confirmed diagnosis. The other half, the treatment/cure half, doesn’t exist yet. But it’s coming, and when it does, it will also benefit Alzheimer’s, ~ Parkinson’s, ~ Muscular Dystrophy, ~ MS ~ and others.
So, there we were, the three of us, my husband, Col and me. It was always the 3 of us. Col went to every single appointment. She took copious notes and her wheels were always turning, planning the next two or three steps ahead of who we should see and what to try next and ~ who else do you know ~ who does that? Only someone ~ so wonderful ~ you’ll never be able to thank them enough if you live to be 100, that’s who.
The drive back home to the suburbs was fairly quiet. Dinner with Col and Nora wasn’t happening now. Not really up for eating and laughing. Anytime my friends and I got together we laughed our sides off. Not today.
My head was killing me and I needed to turn off the ~ sunny side of the street ~ part of me. Now was not the time to give myself the old college pep talk. I had to s h u t ~ it ~ d o w n the same way this last doctor sh u t ~ it ~ d o w n for me. He dashed my plans and dreams, all in one fell swoop, with just two consonants and a vowel. I needed to get home and sit with my ALS-self.
In the evenings after my husband went upstairs I stayed downstairs. I went into the office, searched ‘people living with ALS’ on YouTube and watched endless hours of these videos, for months on end. The good, the bad and the terribly sad. I couldn’t get enough of this surreal way of life that I would one day be a part of.
I quickly learned that my best days are the here and now days, the days right in front of me. I needed to appreciate all that I can do. God never whispered this lesson; He hit me over the head with it.
Every neurology waiting room was a Master Class in perspective. One glance around the room was all it took to see how blessed I already was. I never wanted to look back and think I shoulda, woulda, coulda.
Gratitude is a major part of my story. I had a husband offering the world, whatever it would take to keep me going, daughters acting like personal research assistants, besties in the medical field cashing in all their favors, and family, friends and neighbors offering to do anything and everything; all I had to do was name it.
Irony is the other part of my story. Gratitude set the stage, but irony stole the show.
You might want to have a chair handy for my next post…
Part 1: Ignorance Was Bliss
I felt it, then I didn’t. ~ I felt it, then I didn’t. ~ No sooner did I feel it, than I’d forget about it, because it happened so infrequently. It’s only by looking back that I am able to piece together the first few years of my symptoms.
These “feelings” started catching my attention when they became a little more frequent. By “feelings” I mean just the tweensiest, littlest feeling of imbalance.
So I asked our personal trainer if losing your balance had anything to do with menopause? She did not think so and suggested I see a doctor.
Up until this point the only doctor I ever went to or needed was a gynecologist so I found a primary doctor. She watched me walk, had me follow her pencil with my eyes, asked a few questions, told me she didn’t see anything unusual and to keep exercising.
So I did ~ I kept exercising ~ and put that baby to rest.
Despite exercising more, these “feelings” of imbalance weren’t lessening ~ they were actually increasing. I especially noticed it when moving slow, slow as in standing in a line that’s moving inches, not feet.
It wasn’t until I started falling, that I took what was happening a little more seriously. I mentioned losing my balance and falling as a result of it to two of my closest childhood friends, Col ~ a doctor and Mar ~ a nurse. Their reactions were alarming and it wasn’t long before they were pulling strings, getting me into the top Neurologists in Chicago and beyond.
At the time, “Ignorance is Bliss” was my first, middle and last name, when it came to thinking the changes I was experiencing were no big deal. Maybe my symptoms would mysteriously disappear in the same way that they mysteriously appeared. I mean, why would I think otherwise?
I was in my late 40’s, married with 2 high school aged daughters, rarely got a cold, no history of serious illnesses in my family other than the typical things that happen to parents and grandparents as they age and Empty Nesterville was right around the corner. Life was going along swimmingly ~ until it wasn’t.
And so began three years of neurology appointments, testing and waiting.
The first year of our search I was evaluated at three big hospitals in the Chicago area and at Mayo Clinic in Rochester, MN. The second and third years of our search included three more big hospitals in Chicago and a trip back to Mayo Clinic.
ALS is a diagnosis of exclusion. It’s complicated and takes time. It takes ruling out everything else before doctors give you those three awful letters.
Your initial neurological evaluation includes testing your reflexes, muscle strength, coordination, speech, swallowing and walking. Listed below are the standard tests used in testing for ALS.
EMG’s are needle tests in your muscles, looking for abnormal electric activity and picks up signs of nerve damage and muscle denervation.
Nerve Conduction Studies (NCS) measure how well your nerves carry signals and helps distinguish ALS from neuropathies.
MRI’s (Brain & Spinal Cord) help rule out tumors, MS, and spinal cord compression.
Lumbar Punctures (Spinal Taps) help rule out infections and inflammatory conditions.
Blood & Urine tests check for autoimmune diseases, thyroid problems, heavy metals and vitamin deficiencies.
Pulmonary Function Tests measure breathing strength.
Genetic Testing (if there’s family history) & Muscle Biopsy (if muscle disease is suspected) are the two tests I did not need to have done.
Repeated Clinical Exams over time. Because ALS shows progression, doctors repeat these tests to track the progression of muscle weakness in different regions of the body.
ALS is finally given as a diagnosis when both upper and lower motor neuron signs are present and are spread across different regions of the body. These signs include: stiffness, spasticity, brisk reflexes, twitching, muscle wasting and weakness. They randomly appear in no given order and in various degrees of progression making everyone’s journey unique.
About six months into the first year of our search for what ailed me, I started having to use a cane. I remember getting out of my car one day to buy flowers and the wind almost knocked me over. That was scary and a wake-up call I couldn’t ignore anymore letting me know I’m not as steady on my feet as I used to be.
I got back in my car and thought…huh? Maybe it’s time? So I drove straight to where I needed to go.
The door wasn’t even halfway open before all the charm of a DMV rushed out to greet me. Nothing says Welcome to Disabilities like a home medical supply store.
No cute displays, nothing sparkly or bedazzled, just rows and rows of medical devices and compression socks in fifty shades of beige. The only positive was I wouldn’t have to worry about any impulse shopping.
Thankfully the canes were located near the front of the store because the lump in my throat would have prevented me from asking where they were. When I tell you the selection of canes was grim, I’m being polite. Not a pretty one in the bunch so I settled for the least offensive cane then suddenly realized, I don’t even know which hand to hold it in? That’s when the dam broke.
I turned and asked the sales lady, in between sobs “Do you know which hand I’m supposed to hold this in?” She answered “No,” and kept looking at me so I quickly paid for my aluminum, leopard spotted cane and tried not to let the door hit me too hard on the way out.
How do you work with wheelchairs and oxygen tanks and not engage with your customers even a dot? C’mon, it’s not like people come in here for fun? And for the record, the standard answer is ~ you usually hold the cane in the opposite hand of your weaker leg. This supports you when that leg steps forward.
~ I’ve come a long way baby! ~ What I wouldn’t give now to only need a cane to help me walk, even an atrocious one.
Picking up a temporary aid until I was given the right medicine shouldn’t have phased me but it did. The sight of so many walkers and wheelchairs hit me like a ton of bricks and I thought, “Please God, don’t let this be a sign of things to come.” What if I need a cane or worse, forever? What if I was only at the beginning of what was happening to me?
And right on cue the sunny side of me chimed in “Stop it right now. What are the odds of having something serious when you’re healthy as a horse ~ don’t be ridiculous ~ you’re fine.”
My degree in armchair medicine convinced me I had a temporary situation happening, like a vitamin deficiency or some kind of crazy virus both of which would be an easy fix. We find out what I’m deficient in or get the antidote to my virus and then I can get my life back. Check.
My friend Mar and I watched Medical Mysteries in hopes there’d be someone like me on the show. My answer was out there somewhere but in the meantime…
I couldn’t hide ~ that all was not right in my world ~ now that I was using a cane and had foot drop. The kindness and concern of friends and neighbors that first year was overwhelming and 90% of the time lunch was included. I never ate so well in my life.
Whatever was happening Christ was right there next to me. I never had to ask ~ God, where are you? ~ because I never doubted His presence.
Faith is key. Faith in God, faith that you and your story matter, faith that trials and suffering are never in vain. Faith matters if you don’t want the tidal wave of whatever crisis you’re going through to swallow you whole.
Don’t get me wrong, I ~ pray ~ plead ~ and give God advice just like the next guy. God hears me. He hears all of us and God will give us the grace to see us through, come what may. His grace is sufficient. God is good like that.
After three long years of going round and round the neurology block, my doctor friend Col came up with a genius plan. This would be the ticket, the answer to our prayers!
What happened next ~ I never saw coming…