My powerchair arrived, I’m so relieved, that last fall was not fun.
Tock…
Hands are done, what’s next?
How do you mark time since diagnosis?
There is no right or wrong answer, I assure you it’s done with many factors by all of us. The tendency is to focus on milestones, such as those above. Major changes in our physical abilities, loss of function and large equipment delivery. Or by the passing of yet another beautiful soul. Time is the one thing that all people have in common, we each mark it in our own way.
With ALS, in more advanced people, it is quietly marked by rhythmic tones from medical devices. These devices, marking time while they generate time for us; ultimate co-dependency. Our eyes follow all movement, marking time with every move of the caregiver dance; which demands more from the soul than the body. A dance comprised of constant vigilance, constant movement and an occasional breath.
The fickleness of time, unfortunately, doesn’t afford the same courtesy to all suffering from ALS. Some get more than others for reasons unknown. So what to do…?
Savor and cherish every minute, every moment, every day. Painful, uneventful, good or bad, a moment is a moment. Take it in, reflect, wait for the next one… Repeat.
Recently in a post I made, regarding having a positive outlook, I was reminded that for many this just isn’t possible. This individual reminded me that it’s not as simple as putting on a smile. For some it takes medication in conjunction with other interventions. They were right obviously, in my desire to express the need for a healthy outlook, I unintentionally marginalized the many who require assistance in reaching a sustainable outlook. For this I did apologize, unintentional or not, it was the right thing to do.
Which brings me to this topic.
Worldwide there is a stigma that needing meds for navigating life’s complexities is considered, well, a weakness. I know first hand as do so many others, it simply and unequivocally takes more strength and courage to seek help.
My family is not immune from this. Having three children who suffered at the hands of their biological parents, we afford them every tool available. I’m willing to put myself out there to bring awareness. I take anxiety meds, not daily but as needed, when my mind just won’t relent it’s grip on me. I suspect, no, I know I will require more help as my ALS progresses, as do so many others.
ALS is just the personal reason I require a chemical relationship with myself. There are way too many reasons, intimately personal reasons, that others require a chemical relationship with themselves. Each of them beyond valid. If you don’t understand this, I’m sorry, your approval is not required.
Life with its steep dives and sharp turns requires that we use every tool at our disposal. It is a multifaceted condition, this life of ours; requiring a multifaceted approach to navigating it the best way we can.
Keep your seat belts on, what ever that may be, there are bumps ahead.
At this point in time, in the history of ALS, there is no cure. There are 2 meds, countless potential treatments in development and an army of advocates tirelessly working to end it. So as persons living with ALS we engage, support and wait. We wait, wait for treatments, wait and watch others become free of ALS, as we await the same cure.
After I am cured I would like a few things to happen…
Celebrate my life with me, in spirit, my life without ALS, preferably with an open bar. Keep fighting to create a world without ALS for others. Take care of yourself, take a break, take a trip but most importantly take the time to meet yourself again. Open your heart to new possibilities, new people. Remember me but don’t obsess, I know it will be difficult, wink.
Live, live, live… you have earned it in spades as a caregiver.
My wish for you.
My wish for all affected by the three dreadful letters, ALS.
It’s time to transfer to my powerchair, I wake, I’m helped up and in I go. From the moment my tush hits the seat I feel empowered, ready to go wherever my wrist dictates.
First stop, the kitchen, for my morning dose of coffee!
Sitting on the kitchen island is a tall cup of the miracle nectar, piping hot, bent straw in place. Next, raise my chair to drinking height, sip, sip… ahh.
S²D², Ground Hog Day, Rinse and Repeat.
The days blend together after a while, this includes the feeling that I’m witnessing life just whizz by at warp speed. I sit in the center of my home and I see my kids and wife going a mile a minute, in and out, buzzing past me.
Hi dad, by dad, as I sit.
I move about, never catching up, just when I do, they bounce in another direction. Yet as the blur of their movement leaves a visible trail in the light spectrum, like specter’s moving through time. I can’t catch them so I sit patiently, until they orbit me and notice… me.
It’s not them that has sped up, it’s me that has slowed. ALS has forced me to now experience life from a new vantage point, a much slower vantage point.
Patience is the mechanism by which we find the right pace to meet each other in this dichotomous universe we find ourselves in.
There are voices in my head, many voices. Some are loud, some whisper and some are constant. Sometimes these voices confuse me other times they scare me. There are times some voices comfort me, when I most need it.
Where do these voices come from? From my mind, from the world around me and now through the small screen in my hand. The one place they don’t come from… my mouth.
For persons living with ALS this is eventually a reality, losing our physical voice. This one function we humans deem essential for life, gone. This in and of itself is agonizingly painful for each of us.
It starts with “what was that”? Progresses to “can you repeat that”? Ultimately, “I’m sorry I can’t understand you, please use your device”.
Our voice, the one thing that allows others to know; your thoughts, state of mind and that you are present. So you turn inward, a choice to make, adapt or withdraw.
Now the voices get louder, resonating in my head. Some say “give up, what’s the point”. Others yell “don’t listen, live”! They assault me from every direction, it doesn’t matter if it’s quiet or I’m in a crowd. Some voices come from around me, some encouraging others not so.
Losing our speech, however doesn’t mean losing our voice. Our voice is now mechanical or computerized, but still our voice. It’s also present in the caregiver at your side, your family and in some instances your friends. Your voice is also present in strangers you may never meet. Who are these strangers? Fellow patients, families, advocates… champions of the ALS community!
I know the voices can be deafening at times, know this; who and what you hear is up to you.
Selective hearing is allowed when it’s Your Voice.
If you want to understand what living with ALS is like try some of these activities. Like they say, walk a mile in my shoes, in this case my powerchair.
If you have access borrow a powerchair and spend the day in it. Get loaded into an accessible vehicle and go for a drive, it’s more harrowing than you think. Hit a retail location and experience being invisible. After you circle the parking lot multiple times trying to find a handicap spot.
Go to a restaurant and wait to be fed, pay attention to the looks you get.
While out and about do a handicap bathroom hunt. Not male or female but a family bathroom that accommodates a powerchair, you will be surprised how few there are.
Don’t speak for the day. Use technology to communicate, phone, tablet, computer or just write. Better yet use a low-tech tool like a letter board (I can send you one).
Place mittens on your hands and go about your day, don’t take them off. Now have a drink, write a note, get dressed.
I challenge you to open your mind and your heart, and roll a mile in my wheels.
Between Two Wheelchairs ~~~ Conversation with ALS this am.
Good morning, coffee?
-Oh thanks, but I don’t drink, anything for that matter, I cant.
Sorry I forgot, do you mind if I have some?
-Not at all, enjoy while you can…
So, you’ve been around for 150 yrs now?
-Well, actually I’ve been around much longer, but yes someone decided to call me ALS around that time.
Yes, and since that time no one has been able to develop a treatment or cure, why is that?
‐Well you see, to use current vernacular, it’s complicated, I’m being coy, sorry. But honestly I’m not going to divulge that. I’m a complex syndrome, an enigma of sorts.
Thats boastful, verging on arrogant, don’t you think?
-Well, what can I say, I continue to challenge and elude your brightest minds.
My next question, why do you vary so much from person to person?
-Oh, that’s a good one. Well I happen to be a multifaceted syndrome and given how complex you humans are, I have no choice but to tailor my assaults per person. However, I do hit it on the mark for some and I continue to show up over generations.
Yes, that’s called familial, and you are a curse on those families.
-I know, I don’t mean to be so horrible, its just in my gene’s, see what I did there…
Yeah, I’m not amused. I’m not going to get anywhere with you, am I?
-Oh, I see what you did there! Now who’s being coy?
Your impossible!
-Why thank you.
This conversation is done!
-Oh don’t cry, oh sorry that was insensitive, is it your PBA? You better walk away I can’t help myself, oops sorry, you see I can’t stop.
One can look from the periphery and never really understand the depth and despair that life can bestow on individuals and their families. You can say I understand and never really do. You can say I’m sorry and never really, really know what you’re sorry for. You can say call on me if you need anything, and never stop by unexpectedly to lend a hand.
The life of a family caregiver for an ALS patient is a solitary one. Not only are they dealing with the future loss of their loved one but are also dealing with a loss of their support network when it truly becomes untenable. They’re having to care for their loved one but they are having to continue maintaining the household, advocating on behalf of their loved one. Navigating through the minutiae of healthcare policies and obstacles.
I have learned that caregivers of ALS patients, this is not intended to detract from any other Caregivers for the multitude of other conditions, are some of the strongest individuals on Earth. ALS has been known to destroy families and marriages. In turn it also has the ability to bring people closer and solidify the bonds of love.
I assure you those eyes that track your every move as you buzz around tacking care of us, are full of Love & appreciation. That squint in between the rhythmic hum of the vent says “you mean so much to me”. Inside we are screaming “thank you, thank you, thank you!
If you know anyone who is suffering along side their pALS who needs a break schedule a moment to stop by even if it’s just to spend a few minutes with them. Rally around them and perhaps pamper them for the day. They will not want to leave their loved one and will fight you all the way but trust me they need it and will be eternally grateful.
I am very blessed to have an amazing partner and an incredibly supportive family and network of friends. I also know that my condition has not reached its serious stage. Greater challenges are coming both internal and external. My heart breaks for those who find themselves without an extended network of support and who are battling at every turn just trying to receive the medical care and resources needed to sustain a decent quality of life; holding On by a thread. The adage of ” you don’t know how strong you have to be until strong is all you have left”, cALS live with that. Yet they will assure you that they are fine, when you ask them how they do it they will reply simply by saying “I just do”.
There are many throughout history such as philosophers, ultra successful individuals and public officials who state; when adversity hits you power through. In essence, break past or crash through the obstacle. Pull your boot straps and get to stepping. Pretty straight forward, right?
But, what if you can’t, not metaphorically but physically. What do you do when your body has betrayed you and taken all your physical capabilities to forge through lifes adversities.
Thse are the mental Olympics ALS patients find themselves facing as our condition progresses. We find ourselves having to choose a different path, one of introspection and mental calisthenics.
Some chose solitude and its comforting enrapture, like a blanket. Some chose to simply (nothing simple about it), live their life quietly, privately. Others chose a more visible path, publicly and openly, creating movements, large and small. Hoping to bring about meaningful change to this yet incurable disease. None of these paths are wrong, they are just very personal.
Everyday we wake and mentally exercise our will to live and be present. This is our version of crashing through adversity in our lives. Just simply (theres that word again), living. With no physical ability to release frustration, anger or even joy, we are left with … breathing.
Breathing through pain, anguish, guilt and all other human and primal minutia we live with. Every breath taking in life, another moment with loved ones. Every exhalation releasing the poison that can infest our soul.
Inhale, Exhale, Inhale, Exhale…
Some of us have no choice but to do so at the rhythm of the vent…
Here’s a short series where I take creative approach to engaging with death.
MORNING COFFEE
Good morning Death, come join me for a cup of coffee. I’ve noticed you hanging around most mornings.
“Good morning Juan, can I call you Juan?”
Yes of course, get comfortable, how do you like… never mind I can guess, black no sugar.
“Am I that obvious? But yes, black. Although I do like pumpkin spice from time to time, it’s such a maligned flavor.”
I have to ask you. Where’s the hooded cloak and scythe?
“Oh, really? Can you be so obtuse. Thats such an archaic visage, created by superstition to generate fear. I actually preffer to appear as a family member that has passed. I’m not a cruel being, I actually care.”
I never thought of it like that, how’s the coffee?
“Good, what is it?”
Folgers… nothing fancy.
“Its good.”
So, I have a question…”Yes I know, how can you see me?”
Um… that’s not creepy!?
“Well I am a supernatural being” he says with a practiced grin and perfect pearly whites.
I take a long sip of my coffee, closing my eyes to savor the warmth. When I open my eyes, Death is gone and the morning news drones on in the background.
I am strangely calm and the coffee tastes really good, hmm…
Morning Coffee
“Good morning Juan”
I’m startled awake, it appears I dozed off while drinking my coffee. Good morning, as I stretch…
“Sorry to wake you, I wouldn’t have, but I’m enjoying our morning convo’s.”
Thats ok, I am also, how about a… oh, I see you helped yourself.
Hey, Ive been meaning to ask you, how is it I can see you?
“Well, lets see if I can help you understand. The existence I lead can and is very solitary. From time to time I connect with individuals. Sometimes it does not go well. In fact I regret to say, I have irrevocably damaged lives. I regret those instances.”
I can imagine, some folks can’t handle your presence.
“Yes However some, like yourself, for some reason are not adversely affected. I enjoy these encounters.”
Ok, so you didn’t make me lose my mind. But, not to be a cliche, why me?
“It’s rather simple, to be totally honest. You have come to terms with your mortality. You have accepted that you will die regardless of your condition or circumstances. You have chosen to live in spite of dying. So many individuals exist without actually living. For whatever reason you do not fear dying.”
I’m not sure that’s entirely true. There are so many living with similar adversity, what makes me special?
“Oh, your not special, all individuals have this capacity. I just felt, from experience, I could approach you.”
Well, I for one appreciate your sollitude. ALS can be lonely, slowly isolation happens. Its no ones fault, just a side effect of the decreased physical engagement.
I take a sipp of my coffee, when I look up… yep he’s gone.
Morning Coffee
Good morning, how are you today?
Buenos dias Mijo, un cafesito por favor.
I hadn’t looked over to where death was sitting, I just felt him there. So when I heard him speak, it brought back a flood of memories. I hadn’t heard that voice since I was a child…
Welito Juan!? My namesake… my grandfather.
Ok, your not playing fair, this is difficult; as a flood of emotions come over me.
“Si, lo se, pero te dije que prefiero presentarme como un querido difunto.”
Como te hemos extrañado…
“Lo se Juanito, pero tienes que entender, no soy tu abuelo, simplemente aparecido.”
At this point my Welito starts dunking something into his coffee, what is that, I ask?
“Mis favoritas, las galletitas Nutter Butter.”
It hits me and I can’t contain myself. Memories of trying to steal his nutter butters as kids come crashing like waves. Ultimately he always shared with us, he with coffee and we would get a tall glass of milk.
Six feet tall with silver hair, his smile would reveal his front crooked teeth, and he always had a smile for his grandkids.
I come to my senses momentarily, I ask, ok since your not really him, can you drop the Spanish?
“Yes, of course. How are you today?”
Well after that, I need a moment, I just didn’t expect it. How’s your coffee today?
“Very rich and smooth, did you do something different? “
Added a pinch of salt to the grounds.
“Hmm, just a pinch, its good.”
So I have a question…, how is it that I can see you?
I turn abruptly toward our hallway, one of the boys is up. Turning back to my guest I notice Welito is gone. I’m not surprised. I look out to the back yard. Its a foggy drizzly day, how appropriate…
Love and miss you Welito.
Morning Coffee 4
I roll into the kitchen, raise my chair and turn on the lights.
Im startled but not surprised, Death is at the kitchen table, chair turned toward me. I roll over to join him for our morning coffee. The whole time, mesmerized by who he has chosen to appear as today.
Jan, my father in law. Meg Jankowski Reyes dad. I sit in silence and just stare.
“Good morning Juan”,
that same raspy voice and those squinty eyes. Jan’s eyelids were always heavy, giving the appearance of him squinting. He’s got that big grin. He is sitting in typical fashion, legs crossed elbow on his knee, rail thin as always. How I miss this old man…
“I made you a cup. Sorry I didn’t join you yesterday, too busy.”
That’s quite all right, it was a good day, 6 year anniversary of our adoption. You would have loved our kids and they you.
They would have loved your stories, you had such an interesting life, not always easy, but good overall.
“Jan definitely left an impression; remember I’m not him, I just look like him.”
I know, I know, but the emotions and memories can be overwhelming. The way your sitting, exactly as he would. Meg and I would drive up to their house and find Jan sitting on the steps; cigarette in one hand and a beer in the other.
One of my fondest memories is playing Trivial Pursuit with him. We could never beat him!
Second fondest would be how he started every story. Middle finger waving at you followed by ” Let me tel it to you this way”…
“I’m sorry, if its too hard for you, I can be someone else?”
No its ok, although as whacked as this experience is, its strangely comforting.
“Good, I hoped you would see it this way. Well I’ve got to be off.”
ALS TEXAS DAD 