~I define this as choosing, or finding joy in the midst of dying from a terminal condition.
This in no way detracts from the reality of the pain, grief and suffering brought about by terminal disease’s. Mine is ALS, Lou Gehrig’s disease. The pain begins when the fuse is lit by the words, “you have ALS”. From the moment the recipient of this unstoppable spark receives the diagnosis, only fate knows the length of this fuse. Nothing, at this very moment, can extinguish this terminal spark.
But joy? How can one find joy knowing your life has just been given a fatal blow? It’s no easy feat, by any means. I won’t preach, I will share with you what I do to find joy living with ALS. As unique as each person’s journey is, so is how they find reasons to enjoy life, these are mine.
The obvious one’s: family, friends, self, but wait there’s more!
I find great joy in living in spite of ALS; in a sense I refuse to feed ALS more than the bare minimum. I’m not under the illusion that it won’t take everything from me. But exerting my internal defiance empowers me. This in turn fuels my desire to share my journey publicly, and to help others by engaging in advocacy.
What I write and share I do for several reasons. • It helps me dump all the anger, frustration and grief I experience living with ALS. • I write not only what I feel, but what I hear and observe from the community, with creative liberty. • I’m sharing so those unaffected by ALS can understand the strength it takes to endure life with ALS, to include challenges families face. • I share because so many living with ALS lose their physical voice and aren’t able to express themselves.
Lastly, I truly love meeting others living with ALS! Why? Because ALS doesn’t define them. We are inextricably connected by ALS, but who they are is so much more than the diagnosis. Having been stripped of all pretenses we create for ourselves, somehow we connect on a deeper human level. I am in awe of others and who they are in spite of ALS, truly.
Recent convos with cALS convinced me to share this. Disclaimer: I am not a healthcare professional, always consult professionals for all medical concerns.
Although ALS is a mental and psychological gut punch it is not a free pass to behave like an ass, more importantly it’s also not an opportunity to be abandoned. Two sides of the same blade that is ALS. Both are possible and most likely will happen as a cycle, it’s just natural. However it shouldn’t be a default.
On the other hand there is another aspect to consider.
A small but significantly challenging aspect: Frontotemporal Dementia (FTD). As if ALS weren’t bad enough, some persons can develop FTD, losing not just their physical abilities but ultimately losing who they truly are.
If your loved one is exhibiting behavior that is an extreme difference to who they are, please consider a difficult conversation with the health care team. You as a family and caregiver shouldn’t endure abusive behavior regardless of the reason or cause. Your mental and physical health are just as important as that of your loved one with ALS.
ALS doesn’t own this, there are too many conditions that fall under this to list. Many physical and so many spiritual and mental. I and my family know of ALS, so I will speak only to that.
The moment the words are uttered, “you have ALS”, even the Dr sounds hopeless, resigned to sending you home to die. So naturally you and your family internalize this pulse of hopelessness thrust upon you. Like a dark cloak thrown over your life, it blocks out all light, leaving you to wallow in the darkness.
Here in lies the moment where you must make a choice. No you can’t cast off this cloak, it is now a part of your life wardrobe, added to the many other “fits”, to use current vernacular, you have in your mental wardrobe. The question then is… do you rotate your wardrobe? Or like current teens, wear the same “fit”, until someone says enough! Like a frustrated parent, ” I’m going to burn those T-shirts”, if you’re a parent you know.
Given that this gloomy cloak of despair is a permanent addition to your life closet, how often do you don it and allow it’s false embrace to comfort you? I can’t answer this, only you can. I personally know it’s there, however for reasons I can’t explain, I just don’t care to wear it, it’s simply not my style. Nothing wrong with wearing it from time to time, I know many who simply can’t take it off. This is when help is needed, if you’re open to it.
I for one, am hopeful. Hopeful for the next moment, the next day, the next encounter. Hopeful for treatments and a cure. Much like rock climbing, with ALS you have to focus only on the next handhold, that next crevice, mentally straining your fingers to hold on. It’s immensely difficult, but don’t forget, if you are blessed to have a good support network, trust your Belay.
Forgive my use of multiple metaphors, they just pop into my brain, lol.
Choose your wardrobe, and as many of us do, let others help dress you.
Trust your Belay, they are there to keep you climbing safely.
I’ve dreamt of walking through the redwoods; strolling among the giants and witnessing just a glimpse in time of the countless they themselves have witnessed. As I step onto the trail that so many have walked, I noticed the serenity that came over me. As if the forest whispered to my soul; “breath and let me envelope you”.
My eyes adjust to the absence of open light, observing the streams of sunlight breaking through the canopy. A kaleidoscope in reverse, the canopy acting as the lens. I am now in the kaleidoscope, colors change with every step. The ferns, that populate at the feet of these majestic trees, bowing in reverence to their strength and beauty. As the ground crunches under the weight of my powerchair, I am reminded that my dream has partially come true. I say partially because I cannot walk among these wondrous giants of steadfastness due to my ALS. But I am at peace with this.
There is a damp chill in the air, as the sun and it’s radiance is shielded by the canopy. As if the redwoods are protecting the forest floor and all that reside there from the harm too much sun can inflict. I get goosebumps, are they from the chill or from being in the presence of such a gentle gathering of beautiful testaments of time? Most likely both.
As I navigate among the monoliths, my eyes focus on the bark. Rugged, weathered and thick; a barrier standing guard to time and the elements. Each crevice I imagine created by gradual but constant growth. Waiting for the day it rejoins the forest floor to nourish the next giants in a cycle none present will witness.
The adage that literally means; if you want to know, you have to experience it, what ever that may be.
As for ALS, it truly can’t be experienced unless you have it. But I can attempt to express, in the hopes of helping you understand.
Walk A Mile in my shoes for example, it doesn’t require a mile.
Ok, you have peaked my interest Mr. TJO!
Allow me to illustrate.
You see it won’t take mile, or half a mile, it only requires about four feet.
Four feet in my current stage of ALS is tantamount to a mile, sometimes more like a marathon. The effort and mental gymnastics to accomplish this simple feet is equivalent to the last mile of a marathon, it’s more sheer will than physical ability. It’s not necessary to expend so much energy with alternative methods available. But what would you do if it might be the last time you can perform such a mundane task? I thought so… the same.
Every step a calculated mathematical algorithm known only to you and the malfunctioning neurons. Your brain, a field commander screaming orders to a platoon of fallen nerves, your body the field of battle. One or two survivors on the field hear the call and your leg moves. Repeat the operation until finally you reach your objective. Having crossed the distance with minimal troops, you are now exhausted, depleted of physical and mental reserves, resupply is days out.
To you it’s four feet, a couple of steps. To us with ALS, it’s an expansive field wrought with landmines and reinforcements that never arrive. Yet we forge ahead until we can’t .
sponsored #MTPApartner I’m proud to be partnering with Mitsubishi Tanabe Pharma America (MTPA) to help newly diagnosed pALS and cALS navigate their diagnosis.
Hopeless, terminal, untreatable – all words associated with these three letters; A, L, S.
What do you do with the diagnosis of ALS? Initially, I tried to digest every bit of information I could dig up. Overwhelming and untenable, I at times find it hard to absorb the vast amount of information out there. But I have learned that knowledge is power. And in order to be an advocate for yourself it’s important to learn as much as possible, including what treatment options are available to you.
When discussing potential treatments with my doctor, I will admit the science was out of my grasp. However, undeterred I thoroughly discussed it all at length with my doctor, asking them to break it down for me. RADICAVA® (edaravone) was one of those we explored extensively. I had persistent questions and at times felt hesitant, but I trusted that the experts and my doctors would guide me.
RADICAVA® and RADICAVA ORS® (edaravone) are indicated for the treatment of ALS. RADICAVA® and RADICAVA ORS may cause serious side effects, including hypersensitivity (allergic) reactions and sulfite allergic reactions. The most common side effects include bruising (contusion), problems walking (gait disturbance), and headache. See Important Safety Information below.
I encourage all pALS and cALS to discuss every possible treatment option with their doctor. Until there is a cure we are relegated to live as best we can, surrounded by love. Surrounded by those who embrace us and support us. Ultimately even though we may no longer be able to physically embrace others, we can certainly “embrace our now”.
Interested in sharing your RADICAVA experience with others? MTPA offers the Share Your Story program to allow real people to share real stories. Call a JourneyMateTM Resource Specialist toll-free 1-855-457-6968 or sign-up at http://www.ShareYourALSStory.com.
This information is intended for U.S. audiences only 18 years of age and older. RADICAVA® is available by prescription only. Talk to your doctor.
IMPORTANT SAFETY INFORMATION
Do not receive RADICAVA (edaravone) or RADICAVA ORS (edaravone) if you are allergic to edaravone or any of the ingredients in RADICAVA and RADICAVA ORS.
Before you take RADICAVA or RADICAVA ORS, tell your healthcare provider about all of your medical conditions, including if you: • have asthma • are allergic to other medicines. • are pregnant or plan to become pregnant. It is not known if RADICAVA or RADICAVA ORS will harm your unborn baby. • are breastfeeding or plan to breastfeed. It is not known if RADICAVA or RADICAVA ORS passes into your breastmilk. You and your healthcare provider should decide if you will receive RADICAVA or RADICAVA ORS or breastfeed.
Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.
What are the possible side effects of RADICAVA and RADICAVA ORS? RADICAVA and RADICAVA ORS may cause serious side effects, including hypersensitivity (allergic) reactions and sulfite allergic reactions. • Hypersensitivity reactions have happened in people receiving RADICAVA or taking RADICAVA ORS and can happen after your medicine has been given. • RADICAVA and RADICAVA ORS contain sodium bisulfite, a sulfite that may cause a type of allergic reaction that can be serious and life-threatening. Sodium bisulfite can also cause less severe asthma episodes in certain people. Sulfite sensitivity can happen more often in people who have asthma than in people who do not have asthma. • Tell your healthcare provider right away or go to the nearest emergency room if you have any of the following symptoms: hives; swelling of the lips, tongue, or face; fainting; breathing problems; wheezing; trouble swallowing; dizziness; itching; or an asthma attack (in people with asthma).
Your healthcare provider will monitor you during treatment to watch for signs and symptoms of all the serious side effects and allergic reactions.
The most common side effects include bruising (contusion), problems walking (gait disturbance), and headache.
These are not all the possible side effects of RADICAVA or RADICAVA ORS. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. You may also report side effects to http://www.fda.gov/medwatch or Mitsubishi Tanabe Pharma America, Inc. at 1-888-292-0058.
INDICATION RADICAVA and RADICAVA ORS are indicated for the treatment of amyotrophic lateral sclerosis (ALS).
Previously-oh well no parking, let’s get back to the freeway…
“Come on Big Blue, you can do it”, Meg coaxed BB up the steep SF hill, pausing for a red light. GPS says “turn left “. This is when I learn machines have a sense of humor.
Have you heard the term, the perfect storm? That’s what ensued.
Several blocks later the GPS, “turn right “, “turn right”. Hey this looks familiar!? “Proceed to xxx street and turn right “.
Having navigated through the narrow semi busy inner city streets; expertly avoiding contact with vehicles, mopeds, scooters, bicycle’s and pedestrians, we turned left. Straight into bumper to bumper traffic as far as the eye could see. “But why”, Meg exclaimed, exasperated.
Okay I can do this, Meg told herself. Being the polite Texas lady she is, she refused to block any intersection with Big Blue and the van in tow. This lasted about three intersections. With the aggressive local drivers it was time for a new strategy. Block every ever-loving intersection if I have to, to get out of this *”@#$ mess!
An hour later we think we’re there, only to find more diverted traffic. But! At this point we discovered the reason for the gridlock!
“Ahh!” We both exclaimed at the same time. Well fudge, we were so busy enjoying northern California that we had not kept up with major events and happenings.
Everything culminated in the Perfect Storm. Unbeknownst to us, we chose to venture into San Francisco on the same day as…
The Golden State Warriors victory PARADE!! What gave it away was the hoards of fans in GSW attire and the blue, white and gold confetti along the route.
Waze, Google maps, nor our RV GPS alerted us to a FREAKING PARADE!
If you know my wife, Meg, you know that telling her you can’t or shouldn’t do something, is tantamount to saying “I dare you”. And when she sets her mind on something, step aside. A goal of hers on this trip was to drive across the Golden Gate Bridge. She had shared her desire with friends who have lived in or visited SF, and they all emphatically said, “whatever you do, don’t drive the RV into the city!” It’s at this precise moment that I hear an idea pop into her mind. I liken it to the pop of popcorn, in my mind that is.
As we approached the famed monolith, she exclaimed “I’m doing it!” followed by, “isn’t Ghirardelli in SF?”
Yes, I replied, at this moment I realized my mistake…I should have said NO!
Don’t do it…))) reverberated through my minds ear.
Two miles then turn left into The Ghirardelli Experience!
Turn left down a steeeeep hill.
There’s no parking!
Oh well Meg sighs, let’s get back on the road.
… An hour and a half later, our son comes out of the bedroom at the rear of the RV, asking, “are we there yet”?
Ok Mrs. Reyes, we are now going to take your new RV to a location to have you practice driving it. So we tested out the wheelchair lift, tied my chair down and we hit the road. Did you hit an RV course, where they let you test your skills…nope! Did they take you for a quick loop on the highway, like most dealerships? Nope! The salesman took us a short distance to a mega church parking lot, very empty during the week. He proceeded put the 35 foot rig in park, followed by a brief tutorial on the particulars air breaks and gears.
At this point Meg, AKA Captain Intrepid, took the wheel and proceeded to slowly meander through the parking spots and light poles. After a good 3 or 4 circuits she exclaimed, “this isn’t so bad, I’m doing pretty good!” To which the salesman affirmed, “ you’re a natural, I’m impressed.” I’m certain this is a well practiced script, repeated countless times a week, lol. He reeled Meg in with, “ I’v never seen anyone handle a rig this big off the bat, like you!” The deal was sealed and we were the proud owners of an accessible 35ft RV (bus).
Al that was left was to get Meg a CB Radio and some chewing tobacco and she could start her career as a big rig driver. I shake my head vigorously and come to my senses, erasing that last image from my head…what was I thinking!
Ok trucker Mama, time to hit the road! We depart the advanced RV proving grounds with Meg at the helm. This is when the realization hits me, RV salespeople have nerves of steel, just saying. And with this behind us, Meg having received her certificate, suitable for framing, in RV operations was handed the keys to a behemoth land yacht. CDL Not Required!
RV Park nightmare… We had been on the road about five hours, coasting through the Texas landscape on our way to Van Horn, our first way point. Meg was concerned that our fresh water tank needed a top off, since we planned to boondock/dry-dock. For the uninitiated it means not hooking up to any power, water or sewer.
So as we passed through the ever changing Texas western planes (just a hint of sarcasm), she was ever vigilant for a location that might offer the chance to tap into a source. Mile after mile, I attempted to use my power of astral projection to hover ahead and recon a location for my intrepid wife. To the uninitiated I may have appeared to be napping, rest assured I was heavily engaged in resolving my loves H2O apprehensions. As she exited the interstate I opened my eyes and exclaimed, “found a place on the right here!”. She looked at me with that look many husbands know, saying “ I spotted it from the road, go back to your nap!” I whisper internally, “she is still unaware of my special abilities” just the way I like it.
What we had both found was a quaint RV park…or so we thought.
As we pulled in our hopes of acquiring that precious H2O quickly disappeared, as our eyes settled on the scene before us. We were transported to what looked like a set out of a Mad Max—RV Park! Let me set the scene for you…
… A modern RV (Big Blue) enters an eerie landscape where a spattering of RV’S from bygone eras appear abandoned. Along with a handful of decrepit mobile homes with the compulsory broken kids bicycles and headless children’s doll’s, let’s not forget the broken pinwheels whirling lopsidedly in the yard.
As we circled the loop, going in the wrong direction, that’s the intrepid wife way, just saying. We half expected a hoard of grizzly hardened post apocalyptic clan of half humans. Overtaking our land yacht and roasting us on a spit for their sustenance. I imagine myself yelling, “but I have ALS, I won’t taste good!” After hearing my family as they ran away…”outrun Dad, he can’t run!”, so sad of a way to go. And here I thought my family loved me.
Needless to say Meg quickly hit the accelerator making the RV do things it’s not supposed to. My wheelchair tilted to one side, in response to the steep high G’s banking maneuver. We quickly got back on I-10, fishtailing down the asphalt. All the while as Meg exclaimed, “I don’t need water that effing bad!”
Our narrow escape from the Post Apocalyptic Zombie RV Park! Hey that sounds like a movie…