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Almost young/most of the time

“Winter is not a season, it’s an occupation.” — Sinclair Lewis

“For whatever we lose(like a you or a me)/it’s always ourselves we find in the sea”              — e.e. cummings

If you’ve survived the soul-suckers that both the months of January and February and March can be, then you’re doing all right for yourself. For Sam and me, these months lurched forward with one medical issue after another with restless nights sandwiched between the type of immobilizing fatigue that only an extended stay in the hospital can cause.

To make a long story short, due to malnutrition and dehydration, low oxygen levels, a crazy-fluctuating heart rate, and general ill-being, Sam made two trips to the ER and stayed one week in the hospital. It is not an exaggeration to say that I would not have survived this stressful time without my grandparents, Sam’s mom, and my parents. We had their complete support, even if there wasn’t much for them to help us with at times.

Before Sam’s first visit to the ER, we were making plans to get a feeding tube placed. When dealing with such a swiftly progressive disease, like ALS, it is always best to stay ahead of Lou and his mischief. Ironically, I (of all people!) did not realize how severely Sam was malnourished and dehydrated. The only explanation that seems valid is that I see him everyday, and I don’t necessarily notice subtle changes, or even big changes, in the same way that someone who hasn’t seen him in months will.

Although staying in the hospital is never fun, especially on the Neurological floor where imprisoned octogenarians attempted to escape from their beds and roam the halls only to have Nurse Ratcheted restrain them with a bed monitor and the promise of pain medicine, Sam was able to have his feeding tube placed at least a month earlier than we planned initially. He also had every test performed known to modern medicine, and he is healthy as a horse!

Just to answer a few questions that many people seem to have … yes, Sam can still chew and swallow and speak. His primary source of nutrition is from this special formula that he takes with the help of a pump that pushes the liquid into his belly, but he eats at least two bowls of cereal at night (Cocoa Pebbles, to be exact) and a small meal during the day. Ironically, his appetite has skyrocketed since we have increased the number of calories he consumes everyday. I know that these abilities, the abilities that we all take for granted: eating, speaking, swallowing, coughing, will continue to decline, but I am so grateful and relieved that Sam has gained his strength back. He is in the best shape I have seen him since before Christmas. That is a miracle in and of itself.

Spending all of this time in the hospital and seeing Sam so weak got me ruminating, which is always dangerous. Some of you may understand how you can think yourself into the swamp, unable to get back on the trail of reasonability. But then I think, well, this whole situation is completely unreasonable, so I may as well honor my feelings as I feel them.

Recently, a friend’s husband passed away from this monstrous disease. I can only imagine her pain now, and yet, I don’t want to dwell in it — out of fear, for my sanity, out of gratitude for where Sam is right now, maybe all of the above. I choose to live in the present, and in my present I have so much to be grateful for: Sam’s health and strength, our ability to travel, and the great support that we have from our families and from people who we have never even met! Someone commented to me that this may be a form of denial, along with my use of anti-depressants (that’s another story, folks), but my only response is this: you have no idea until you live it. Degrees, a career, case studies, books, Ted Talks, clients — even the experience you may have had with someone else in a similar situation does not give you permission to make judgments on me and my response to the slow death of my favorite person in the world. Unless I am in some way being negligible in my care of Sam, I figure I am doing fine for now. Perfection and status and the judgments that others may or may not pronounce on our decisions have flown the coop, and, I say, for the better.

That isn’t to say that I do not grieve for Sam and for myself and for our life and that I do not grieve for those lost in this long war and for those left behind, struggling to know how to dig out of the trenches. I do. I just remind myself that right now it’s more about Sam than me. I have chosen to take on that role because I want to be there for Sam completely. I don’t want to hijack his pain and only see it through the lens of myself and my pain. My solace is the peace that those who have gone before us have finally found — and that this too shall pass, eventually. ALS is a physical and neurological disease, but even more than that, it is a test of will and a challenge to the mind and to the heart. It might even be more of a mental game than anything else. Also, it is a revelation of Sam’s character, of my character, and the character of those around us.

During our journey with Lou of almost 4 years, I have noticed that it is those who you least expect who get it and who stick around. More often than not, it is those who society finds difficult to understand and, from a traditional Christian perspective, may even view as “lost.” But often different doesn’t matter to the outcast. And the marginalized have really embraced Sam simply because they see that he needs a friend — in whatever form that may be.

So, to honor the survival of these hard months and hard thoughts, we decided to take a trip to the beach. A family friend let us use her condo at Hilton Head, and it was fantastic! Sam, Conner (our dachshund), and I lounged on the back porch, enjoying the sun and watching the tide come in and go out. We read continuously and indulged in fresh seafood. I’d say it was one of our best trips because we did absolutely nothing.

 

Life with dignity

Standing in my kitchen, a new friend and I were discussing Sam. I was surprised that she was so open with her questions and that she had done some internet research on the disease, like many people she had no idea what it was until she met Sam.

So many people don’t ask why Sam is in a wheelchair or why he has difficulty speaking or why I help him with many basic movements, like eating and sitting up. I think it’s because they don’t feel like it’s their place or they don’t want to make us uncomfortable when the truth is that they may be uncomfortable.

Discussing difficult topics with no solution is challenging. Plain and simple. It can be difficult to us, our family and friends, and complete strangers. But it’s important to talk about.

Silence is a slow and deadly killer (and so utterly pointless and weak) and not to acknowledge the elephant in the room is to give denial and fear power. While Sam and I do not dwell on challenges now, or later, we do discuss what is difficult, or flat out impossible, for us now and what the future may hold in store for both of us. It requires courage and love to acknowledge this disease openly.

As Jane Austen wrote: “Let other pens dwell on guilt and misery.”

I may not follow that principle too closely at times, but I find that when I am honest with myself and investing in healthy ways in both myself and Sam, I can recognize the daily joy we find in each other and our time together.

Why would I choose, for it is a choice many times, to suffer when I have Sam? Then it becomes about me and not Sam. I can’t support him when I am floating in my sea of misery. Pain, or the distractions we use to cover our pain, can be addicting. But neither of those help anybody in the long run. I don’t want to look back and realize that I spent more time considering the fact that I may lose Sam than enjoying my time with him.

He just continues to amaze me every time he smiles, every time he laughs, every emotional investment he makes in someone else. His choice to live his life should inspire us all!

As my friend and I continued to discuss life with ALS, she expressed admiration for how we live. I attempted to shrug it off (like many people, compliments make me uncomfortable!), but then she said, “Just look at what you’ve created.” And it hit me: the way we choose to engage in life with passion and joy and purpose is the greatest example.

There are many champions of ALS (God love them), but Sam and I are not them. Without those who have gone before us, Sam would not have the same healthcare benefits, financial benefits, and social benefits that he does, so we look to them for inspiration and strength, at times. But it is comforting to me to know that God is using us — even in the littlest of ways.

Recently, I’ve wondered if I’ve become too comfortable with our life and have stopped asking the “big” questions. You know — who am I? What do I want out of life? What or who am I investing in that I should or should’t be? What are my goals? Am I less of a person because I don’t have a career? Or children?

It sounds crazy, but I keep on hearing about everyone’s pain and suffering, and I am seriously considering if I am suffering enough. I mean, shouldn’t I be more miserable with the bad hand that Sam, especially Sam, and I have been dealt?

Mark Twain said, “Good friends, good books, and a sleepy conscience: this is the ideal life.”

Living this close to death does make your conscience sleepy! Just kidding, serious pants people.

But it does force you to not worry as much or compare yourself as much or, quite simply, care as much about what people may think or what they may achieve or have. At least that’s what I have found.

More importantly, I believe that we are so blessed by so many of you! A myriad of people have given to us financially, emotionally, and with their time and talents. This disease can bring out the best or the worst in people, Sam and myself included. So please know that this is better with you along for the ride!

I’ll end with Henry Wadsworth Longfellow: “For after all, the best thing one can do when it is raining is let it rain.”

A feast for the hungry

My mom has a decorative plate displayed in her room. Painted by a funky artist, it captures the face of a woman wearing both a sly expression and a floppy, fashionable hat. Next to her are the following statements:

I have enough.

I do enough.

I am enough.

I have admired and considered these expressions often. During a time when many women feel as if they could always do better or do more, myself included, it’s an almost revolutionary view to accept of yourself.

In fact, it’s the greatest dirty secret ever: many times doing nothing is better than simply filling your time with something.

So often the need to please, to avoid, to distract, to control, to impress drives us to insane amounts of bustling and hustling.

How often have I taken the presumed judgments of those I know, and those I don’t, and attempted to answer unspoken accusations of how I should live my life, spend my time, what I should buy with our money, and, especially, how we should navigate the jagged terrain of long-term illness?

T.S. Eliot, in the stanzas of one of my favorite poems, “The Love Song of J. Alfred Prufrock,” says it best:

And I have known the eyes already, known them all—
The eyes that fix you in a formulated phrase,
And when I am formulated, sprawling on a pin,
When I am pinned and wriggling on the wall,
Then how should I begin
To spit out all the butt-ends of my days and ways?
               And how should I presume?

And yet … the irony is that so often the eyes formulating me, pinning me to the wall are my own: I am trapped by my own expectations of myself and what I believe to be the expectations of others.

I do not have enough.

I do not do enough.

I am not enough.

My expectations of myself are so often unattainable and so … boring. Perfection is boring, so self-absorbed. So why do I crave it?

There is a concept in Japanese aesthetics called wabi-sabi. The premise calls for the embracement of the imperfect in objects and in life. So much of what we desire (perfection, permanence, completion) simply does not exist. And that’s okay. Our little imperfections, or what we may view as shortcomings, make us unique, especially to those who love us.

In my life, so much is out of my control. And it’s the really important stuff, too. The rate of Sam’s progression, our medical bills, Sam’s happiness, and, at times, my own physical and emotional health.

What I can control, I really try to treat gently. I don’t try to control it at all. We are our own worst critics, but I am beginning to understand that being gentle with myself leads to more inner peace and the shedding of unnecessary layers of distraction, yielding beautiful results.

But enough about me and my little thoughts.

ADLs. Activities of daily living. This is healthcare-speak for all of those activities we do for ourselves without a second thought: brushing our teeth, bathing, pouring ourselves a cup of coffee, tying our shoelaces, etc. These are also all of the things that I help Sam with daily and hourly.

You may have seen the comedy skit in which one person stands behind another and acts as their hands, doing these ADLs for the person in front without being able to see. Chaos ensues.

*Cue generic laughter from the audience

That’s basically Sam and me, only there usually isn’t much laughter. It takes a strong man to let his wife become his hands, his voice, his caregiver.

Yesterday, we went to Sam’s first ALS clinic appointment at Erlanger Neurology in Chattanooga. We left Vanderbilt Neurology because we were tired of traveling to Nashville, and we wanted to focus more on Sam’s holistic care rather than research.

While this is never a fun day, especially for Sam, we appreciated the efficient system they have set up. We were relieved to learn that Sam’s FVC has remained stable since his last assessment at the beginning of June. To clarify, this means that his diaphragm is still strong and neither non-invasive (BiPAP) or invasive equipment (a trache) is necessary. We are so thankful for this!

Also, Sam is doing so well since the placement of his Baclofen pump. It has made a world of difference in our daily life in every way. The area where the pump was placed has healed quickly. He has less leg pain, and stretching is so much easier. Transfers have become safer and so has driving his wheelchair. I’m so thankful that we made this decision and for all of you who supported us financially and in prayer, and especially for my parents, Sam’s mom, and my grandparents who were all there pre and post surgery.

The holiday season is a hungry season. We crave every sweet and savory helping, person, place, and tradition it has to offer. And in the midst of food, family, gifts, and cheer we want it to last forever. But as Robert Frost said, “Nothing gold can stay.” Transition is part of life, so Sam and I stuff ourselves with every minute of it while we can.

Julia Child said, “Life itself is the proper binge.” This Thanksgiving, I’ll take this advice from a woman who lived her life without worrying if she had enough, did enough, or was enough.

I am a caregiver.

“We must be willing to get rid of the life we’ve planned, so as to have the life that is waiting for us.”  ~Joseph Campbell

I am a caregiver. I am my husband’s only caregiver. I am full-time, always needed. These are sentences that, quite literally, define my whole life. They didn’t define my life three years ago, when Sam was first diagnosed with ALS, when I wrote one of my initial blog posts about how all of this feels.

My, oh my, how much has changed — how much I’ve changed.

Sam often feels like much of his life is on display — and it is. Selfishly, maybe, I want everyone to understand what life with Lou is like, at least as much as possible. I want everyone who hears about or reads our story to begin to understand the difficulties of public accessibility or the sheer impossibility of navigating and paying for our healthcare system with a terminal illness or of what is possible when people give up little luxuries for the needs of others. Yes, ALS is a bear to live with, but life with Lou forces you to take stock of what is really important.

And I don’t mean to suggest that Sam & I needed a terminal illness diagnosis six weeks into our marriage to understand what is really important. I think that’s attempting to attach or to find meaning where there quite simply isn’t any. People get sick. People die of old age. Children suffer monstrosities. Adults live with only “first-world problems” their whole lives. And through all of this adventure we call life we either understand what’s important or we don’t. I’ve discovered that trials don’t automatically equate sainthood.

But I understand the need for meaning. In a world of chaos, violence, and fear we want to know that all of this pain and suffering isn’t random, that we will be able to make it on the otherside — scars and all. And as Christians, the good news is that we can.

But it doesn’t make suffering or loss okay. It doesn’t even make it bearable.

We survive another day because we have to, if not for ourselves than for the others who rely on us. We recognize the beauty in everyday life — and oh, what a lovely life it is when we take the time to see it. We choose to wake up, to participate, to pluck the goodness from every juicy bite life offers. We don’t apologize for what brings us joy, for what allows us to participate in a community of gratitude.

No, what I mean is that to live abundantly and with meaning while you or someone you love has a terminal illness, you need to elevate your thoughts. Every day we are meditating on something — whether we realize it or not. Our focus could be money, career status, body image, relationship success, societal or familial expectations. Yes, these are important, but when terminal illness wipes away much of these traditional expectations or priorities, how do you thrive in the margins?

I don’t even begin to pretend to have the answers. Just because our life is hard doesn’t make us wise and good. I think that, as a caregiver and a wife, I’m only beginning to see what a flower I can bloom into with acceptance of my role: tears on fertile soil are only as good as the hand that is willing to plow the dirt.

What I mean to say amongst all of this metaphor is that a beautiful me, a beautiful us, a beautiful world can only begin to bloom with a willing heart and a willing hand.

So, enough with pretty thoughts and flowery language. Life as a caregiver gives you many lemons.

But I remind myself that whether I wanted this life or not doesn’t really matter. I am here. With Sam. Always.

We are a team. One crazy-fighting-against-the-odds-for-better-or-for-worse-team.

At times, my ego has no place in this life with this illness. I have been third our entire marriage: Lou, Sam, Ashley. As a caregiver-wife I have to come to accept this as necessary. Even our marriage has to, at times, come second to Lou. We are a team against him.

Most recently, I’ve been shocked to learn that our roles aren’t equal by any means. I think it’s taken me a while to accept that, to even see it. As much as I want to be right there for Sam, ALS continues to divide us. Lou continues to pull Sam away from any solid ground. He’s floating away further and farther from our anchored ship. From me.

That’s what is the hardest.

I want to be an equal in this. On selfish days, I want to feel that our pain is the same. I want to feel that my pain is as important as his.

It’s not. None of ours is.

We will have time to process our pain, to let it bloom into something beautiful — if we choose.

Why does Sam have to be the seed for my growth? For yours? I have no idea. And for me, I don’t really need an answer right now. I’ve begun to accept my place in this hierarchy. There must be some growth in the dying of self for another. I have to believe that. That is what allows us, as people, to truly flourish.

Some mornings I wake up so angry. I want to scream: why aren’t people doing more?! Sam is the most important person in my life, and he should be in everyone else’s! Why do people make promises or offers that they don’t intend to keep? Why is every day so draining, so hard? Why isn’t there a cure yet?

These questions swirl in my brain on days when stress comes knocking: more bills in the mail, Sam’s fractured scapula, a fall during a transfer resulting in a visit to the ER, selfish family members and friends, the moving forward of everyone else’s lives while ours stands still, some small progression proving that Lou is tightening his grip on Sam.

Yes, I am prone to self-pity and doubt about everything.

But then I remember that I have an opportunity to be the best caregiver, friend, and wife to Sam. I remember that, whether we want to be or not, we are an example.

So, for every sleepless night, every request after request after request, every change in Sam’s body, every prayer that seems to go unnoticed, every need, I remember that I am a caregiver and that I am cared for by so many of you.

These beauties were from Sam 🙂

From Sam, pt. II

I am dying.

It’s taken me a while to admit it, let alone to put it in writing.

The first year that I had ALS, I focused on figuring out if I really had ALS — from going on a Paleo diet to Vitamin B injections to sending samples of my poop to a company to see if I had a bacteria infection that mimicked ALS. Like many people with ALS, I tried it all.

The second year, Ashley and I began to admit that there was a chance that I had ALS. My body was deteriorating, and it became impossible to ignore that something was seriously wrong. We started visiting different doctors around the country, getting 3rd and 4th opinions and taking part in a clinical trial. Even contemplating going out of the country for stem cell treatments.

The beginning of this 3rd year has been a mixture of multiple doctor visits and trying to accept that I have this disease and maintaining a quality of life as my body continues to betray me. From cane to walker to wheelchair, so much has changed. The ability to eat, to get dressed, to drive a car independently, to grab my dog, and to hug Ashley has left me.

Facing all of this means admitting that I could die really soon. This doesn’t mean that I’m going to give up fighting it though. It just means that reality is a little closer than it used to be.

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When you have ALS, there are milestones and moments that you can never forget. You remember every detail, every word, every feeling about that certain day or event. These memories haunt me, for better and worse.

The first memory I have is, obviously, the day I was diagnosed. I remember being in the doctor’s room, shaking, being told I was in shock. Then driving around Nashville for two hours, trying to figure out when and how to tell Ashley the news. I didn’t know what to do with myself. I remember thinking that this can’t be happening to me.

The very first person I told was my boss. She was kind enough to give me the day off and to tell me to let Ashley know right away, even though she was in the middle of teaching. That was the hardest thing I’ve ever had to do, along with telling my family.

I remember my last day of work. No retirement party for me. I was standing in between the Deli and Meat Departments. I had just been promoted to assistant store manager. Everyone was so busy, but I felt like I was in a movie. Everything slowed down and went silent. Some people thought that I would just leave for the summer and come back to work in the fall, but I knew I would never be back.

I remember getting sized for my wheelchair. I waited too long to get it. I was too weak to use my cane but didn’t want to admit it. I didn’t realize how stuck I was, even though I would sit in the living room on the sofa and not move for hours. I hadn’t even left the house in three weeks and had hardly left the house in six months. Finally, I had the courage to talk with Ashley about making the appointment.

I remember the day my electric wheelchair was delivered to my house. The sight of the wheelchair made me so mad, and I didn’t want to sit in it for days. But the chair has given me more freedom and opportunities I never thought possible. It has introduced me to people around the country and the world who are interested in my story.

I remember getting my accessible van. I realized that I was going to have to take my wheelchair in public. I only went to the houses of family members initially. When I finally went out in public for the first time, I felt like there was a spotlight on me. Everyone saw me but didn’t see me. People avoided walking near me. It has gotten easier to go in public, but I still have a feeling in my gut that I am very different from everyone else. I still have to force myself to leave the house for all of these reasons.

Most recently, I remember being approved for eye gaze technology. I was in disbelief that I was actually having a conversation with someone about never using my hands again. I remember leaving the hospital, feeling so disgusted that I tried to run my wheelchair off the curb and crash. Stupid me, did it right in front of the valet guys. They caught me and put me back on the curb.

The order in the journey of loss is different for all ALS patients, but I have finally lost the ability to use my left hand. I had been using my ring finger to control my iPad and remotes, but now both of my hands are useless.

This is tough for a lot of reasons, but especially because I don’t have my eye gaze technology computer yet. So I’m at the will of other people helping me to do everything. It’s frustrating because now I feel very stuck and dependent on Ashley. I can’t even check a soccer score on Google. Now, I can’t use my iPad at all.

The beginnings of another loss are creeping up on me. I can’t remember the exact day or moment, but I started to feel like I was losing my voice. I couldn’t speak up, and I was terrified that by the end of the week I wouldn’t be able to talk at all. Out of everything that’s being taken away from me, the most important is being able to speak. I want to continue to be able to communicate with Ashley and my family. Fortunately, I still can for now.

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When thinking about my life pre and post ALS, I wake up in disbelief at how much everything has changed so drastically.

I have lost touch with most of my friends, and it’s my fault too. I cannot do any of the activities I once loved — surfing, playing my guitar, running. But since my diagnosis, I have met people I never would have if I were well and done many things that I never thought I would ever do.

The longer I have ALS, the more I realize that I have much more in common with people over the age of 65 than with my own age group. I can relate to older people a lot more. They don’t seem to be as intimidated or nervous to talk with me. I believe that my wheelchair makes people not know what to say to me, and I don’t blame them. I wouldn’t know what to say to me either.

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Between family and friends and the generosity of complete strangers, Ashley and I have been able to travel around the country and to parts of the world. And all because people have compassion for me.

It still amazes me at the number of people that I don’t even know who help me out financially and emotionally. I have been able to travel to the four corners of the U.S., along with countless National Parks, to share coffee in Columbia with Columbians, to smoke Cuban cigars in Cuba, and to take Ashley to where I grew up, Australia. I’ve also got a few tattoos, swam in the Pacific, Atlantic, and Gulf oceans and been given the opportunity to attend most of the sporting events of my dreams.

Traveling creates mixed emotions in me. All of these experiences are fun, but I am very limited in what I can do. Any activity I want to do requires planning. Seeing other people doing things that I can’t do sucks. People my age are going one direction, while I’m headed with the handicapped group. My options are extremely limited.

There are too many people, those I know and those I don’t, to thank for the life I have. These people have made life with ALS more bearable and have allowed me to spend so much time with my best friend and wife, Ashley.

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For some reason, losing the ability to use my hands has really messed with my head — more than any other loss so far. I have started to change my thinking, realizing that I’ve always believed that I would get better, that the ALS would reverse. Now, I’m trying to come to terms with the possibility that there may not be a miracle and that I may not get better, which is good and sad. I’m treating every day like it’s special and not waiting, depressed, for a miracle.

I heard another guy with ALS say this, and it has stuck with me: I am the weakest I have ever been in my whole life but the strongest I ever will be.

I butchered that. Sorry, dude. He said it much more eloquently than I did.

I’ve been more anxious than I ever have in my whole life and have not been sleeping well. But I’ve been praying more and realizing that only when things are going badly do you really pray, at least in my case. I have screamed, cried, and swore at God for allowing this disease to happen to me. I have made deals with Him, promising Him everything I will do if I get better.

But I’m realizing that life without ALS may not be His plan for me.

I’m sharing all of this in the hope that by writing this all down, and getting it off of my chest, it will help me to let it go and not to think about it so much.

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I’ve been hearing from people, and through the grapevine, what a strong person and even a role model that I am. There is nothing further from the truth. The real heroes are the doctors and researchers and caregivers.

If it wasn’t for my caregiver/wife I wouldn’t even get out of bed. Ashley helps me get through the day and pulls me out of any funk I’m in with hardly ever complaining. I do enough complaining for the both of us.

I’m just trying to accept this disease and to take one small step at a time. I haven’t got my eye gaze technology yet and am not really looking forward to it. But I’ll just have to see. Like my wheelchair and accessible van, it could be a blessing in disguise.

I just want to thank everyone who has prayed and given me financial and emotional help.

I am on my way to accepting my diagnosis, but I’m still praying for a miracle.

Your heart is a legend

If you speak the truth, the monster whispered in his ear, you will be able to face whatever comes.
― Patrick Ness, A Monster Calls

Last Friday, Sam went for his AAC evaluation at Vandy. We went to test out the eye gaze technology that we are interested in purchasing. This is what so many of you have donated so generously towards! I wasn’t upset all day; in fact, much of the day had been made easier because Sam’s brother had flown from OKC to visit and had taken on the task of driving.

We hadn’t been there for more than ten minutes before I, suddenly, became upset and had to leave the room. Normally, when we attend doctor’s appointments I am as cool as a cucumber. I charge in there with prepared questions and harass (if necessary) everyone in clinic in order to get Sam the best treatment possible. But, in all honesty, there is something so, so scary about Sam losing the abilities to speak and to eat. The loss of these two abilities frightens me more than breathing difficulties. Although we are still torn about the use of a tracheostomy, at least we have that weapon in our back pockets, ready to wield stealthily against Lou.

But amongst all of the technical jargon that the speech pathologist was throwing at us, the reality of impending pain shown through major patches of overall brightness, like holes in the layers of comfort we wrap so tightly around us to get through this life. See, Sam actually has no problem with his speech. Insurance won’t pay for the technology because of this. So, really, this is a good thing. I’m always telling Sam that his need for assistive technology is a positive sign. Many ALS patients aren’t able to use the adaptations that are out there because of their swift progression.

This disease just takes and takes and takes . . . and then — it takes some more. Greedy, greedy beast.

At some point, we are all outsiders in this. Even me. This has been difficult to accept. We are a team in this, Sam and me. But the longer we live with Lou, the more I am faced with the questions of life, in general and ours specifically: what does it mean to us to live with terminal illness? What will our life look like? What do we want it to look like? How do we pack as much joy and adventure and love into every day?

And the question that makes me realize that a pane of glass exists between us ultimately, and I am, like the rest, pressing my face against it, creating a fog with my breath, trying to understand and make sense: could I live with this? Having the ability to do anything stripped away slowly really forces you to realize how much we live in the physical, the material world. I know that seems obvious, but consider it — how often we, almost unwittingly, scratch, adjust, twitch. Imagine holding a warm cup of coffee in your hands, lifting a dusty book to your face, and scratching words on paper — gone. Could I live without these things and learn to live in the body that has betrayed me, the body that has become a cage? Like some sort of monk wondering, silently and slowly through inner chambers into the places that no one dares to go. I don’t know.

And even now, I’m romanticizing it.

It’s difficult to put all of this down into words because it can feel like I’m giving power to fear. But fear feeds off of alienation, from trying to run away from it. The unknown holds power because we imagine it to be more than we can handle, but I am encouraged by believing that God will never give me more than I can handle. I receive even more comfort by knowing this applies to Sam. Miracles happen everyday, and they happen in our house every time Sam smiles. We find such joy in our little, domestic comforts, in waking up next to each other in the fuzzy, morning light. Our life seems so small, but there really is something grand in our adventure.

“As white snowflakes fall quietly and thickly on a winter day, answers to prayer will settle down upon you at every step you take, even to your dying day. The story of your life will be the story of prayer and answers to prayer.”
― Ole Hallesby, Prayer

Christmas Letter

“We are weathered like the mountain ash trees that grow here. They bend away from the wind and are battered, torn, and twisted. But they survive here, through it all, and they belong here because of it. That weathering makes us what we are.”

— James Rebanks, The Shepherd’s Life

 

Happy Holidays, folks!

This time of year — with the transition from vibrant, deciduous trees and pumpkin everything to icy, blue mornings and skeletal  forest frames– reminds me that although winter can seem bare, these dying months serve a purpose.

In the natural world, winter kills pathogens and harmful insects while allowing plants the necessary time to rest and restore. The chilling hours, as they are known, give plants the chance to pause and hold onto much-needed energy reserves for the upcoming spring.

Throughout some seasons, life can seem like an eternal winter. Sam and I know that, terminal illness or not, even the holidays can lose some charm for everyone at times.

But there is so much going on under the surface. Winter is a reminder of spring. Even though winter can be harsh and wreak havoc with our bodies and minds, we don’t want to bloom too early — we don’t want a false spring. Let’s let winter be what it will and take comfort in the fact that dark nights of the soul don’t last forever and that they, like the four starkly varying seasons, are important and part of something larger: they help to make us who we are.

As many of you know, Sam started his Radicava treatments recently. Radicava is one of only two drugs that has been approved by the FDA to treat ALS. It was approved in August, and after much anxiety and impatience (especially on my part) Sam started his treatment the week of Thanksgiving. Radicava is a drug given by infusion. Despite my complete lack of medical knowledge and expertise, I have been giving the infusions (quite successfully I might add) to Sam. The expectation is that Sam will receive infusions for 10 days each month of the year. We are very excited about this because studies found that this drug slows the progression of ALS by 33%!

Because this is a new drug it is very expensive. Fortunately, Sam’s insurance is paying 80%, and we received a grant to cover the remaining 20% of the cost of the drug itself. There are three components to this drug: nursing, the drug, and infusion supplies. Again, thankfully, insurance and the grant cover the nursing and drug portions 100%.  Our only cost is supplies, which is roughly $350 a month. Although this is still costly, we are so thankful that it is this low!

The first Friday of this month found us at clinic, a place where a multitude of ALS patients gather in one place to see their neurologist, pulmonologist, physical and occupational therapists, etc. Sam’s functional vital capacity remains in a healthy range, and thankfully, his progression is still moving at a snail’s pace.

That being said, Sam’s mobility and strength are compromised. His voice, breathing, and swallowing are still healthy, so mobility is our biggest struggle at the moment. When meeting with the occupational therapist, we discussed the need for eye gaze assistive technology, which is essentially a system that would allow Sam to use only his eyes to control everything on the computer. This would mean that despite lacking the strength that you or I have in his arms and hands, he could still access anything he wants. ALS takes and takes and takes, but, sometimes, we can use technology to fight back.

The occupational therapist told us that our portion would be roughly $5,000. If you wish to help us with this much-needed purchase, we would be so grateful. God has always taken care of our needs: an accessible apartment, an electric wheelchair, an accessible van — and the list goes on!

It is the season for gratitude and of generosity, and we are so thankful for the love of family, friends, and strangers. We know God is working out so much that is going on under the surface and using others to affirm His love for us.

As always, we take such comfort in your friendship and support and hope that your holidays are filled with cheer.

Love,

Sam & Ashley Harper

“I’m so glad I live in a world where there are Octobers.” — L.M. Montgomery

Hello, everyone!

Sam and I were just discussing that it has been 5 months since I posted an update — wow!

A lot has happened and a lot of nothing has happened. In the world of ALS this can be a very good thing. But the days tend to blur into one, and I lose track of time. Here in Chattanooga we’ve rushed from a stuffy September to a late-October chill. Finally!

During our incidental internet hiatus, we cocooned ourselves in easy and extended summer days, and nothing of note happened, which is nice. We took a Harper family vacation to the Great Smokey Mountains, celebrated my birthday (29, yikes…), and camped at Cloudland Canyon State Park.

Albert Camus wrote: “Autumn is a second spring when every leaf is a flower.” Right now, we are enjoying the change in season and the beginning of the changing of leaves. It refreshes the spirit and gives us something to look forward to: the holidays!

As many of you know, we raised money for an accessible van, as Sam’s electric wheelchair has become his modus operandi of transportation. We have dubbed our new ride “Road Bear” and have already taken her on many excursions. We visited Sam’s brother and his wife in OKC recently and were even able to head west to the Grand Canyon.

The wheelchair has been an adjustment for Sam, but he faces every outing with courage and, essentially, resignation. Acceptance is a key ingredient to the enjoyment of every day. I never thought that I would say that, but we’re two years and two months down the road and a lot has changed. And we’ve changed a lot, too. Lou hasn’t won this battle, but we are all learning to work together on this thing called life with terminal illness.

I always tell Sam that despite needing a wheelchair, he is still Sam. If the wheelchair makes some people a little uncomfortable (or even himself), well, get over it! I know that that is easier said than done, as I am able to use my legs, but perspective only changes with a little discomfort. Here’s a pic of the back of Sam’s chair, which we’ve lovingly decorated.

Sam’s last doctor’s appointment was in August, and along with seeing Tim Shaw (former Titan’s player living with ALS), his vital lung capacity was 96%, which is excellent. Mobility has become more difficult for Sam and his strength is compromised, but his breathing, speech, and ability to swallow remain fully intact. We’ll take that as a win.

We’ve also wrapped up the clinical trial that Sam was taking part in at Massachusetts General Hospital. We know for sure that he received the drug (Ibudilast) for 8 months, but we won’t know if it reduced the inflammation in his brain until every patient in the study has completed the trial. We are often asked if we notice an improvement or if we think it helped in slowing down the progression. Yes? No? Maybe? Sam is doing relatively well in the grand scheme of things, but that could have nothing or everything or something to do with his participation in the trial. We did find out that he has had the disease too long to qualify for participation in any stem cell trial, but we remain hopeful in the new drug that was just released, Radicava.

We are still waiting on insurance to agree to pay 80% of the cost of the drug, but we did receive a grant to help with the copay. This is a very expensive drug because it is new (only the second FDA-approved drug to treat ALS) and it is an infusion. The expectation is that a nurse will come to our house every day for two weeks to give Sam his infusion, which will last about an hour. Then, he will have two weeks off and then two weeks on, etc. This could go on forever. It is not a one-time treatment. The average annual cost is $12,000 a year — just for the drug! We are so thankful for continued contributions in order to help offset the cost of the nurse and supplies and for my aunt, who told us about the grant. Knowledge is power, people!

This drug is expected to slow down the rate of progression by 33%, so it is worth waiting for. Please help us by praying for a speedy and complete approval by the insurance company.

Sam has his next doctor’s appointment in December, and I will be sure to let everyone know how that goes.

I try to keep this blog lighthearted. At times it isn’t difficult because we are truly taken care of completely by God. We have generous and faithful family and friends and even people we have never met who invest in us. We are able to travel and to live independently. Sam and I have had opportunities that others dream of.

I keep on waiting for the bad times because I see the spouses of my friends and shudder to think what may lay ahead, but, most days, Sam and I have a good time. I always joke that it’s a good thing we actually like each other because we spend so much time together!

All that being said, this disease can be very lonely. People don’t know what to say or do, and those people who you thought would be around forever can disappear. That is why we so appreciate the spiritual/financial/emotional/practical support from those who have been there for us.

More updates to follow 🙂

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These days

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Phew! I can’t believe it has been almost a month since I’ve last taken the time to pen some thoughts. One of the most exciting things we’ve done since my last post is to attend the Indy 500. What an experience! Let me tell you ….

It was hard to tell if people cared half as much about the race as getting completely and utterly drunk, but, hey, that’s part of the experience. It’s like getting a funnel cake at the fair. If nothing else, Sam and I are all about the experience.

Sam even got to see one of his favorite Formula 1 drivers, Fernando Alonso, compete. He was doing so well! Until his car just broke down. C’est la vie.

But the trip was really made for me when I discovered two things about our hosts. Firstly, that Lisa loves to read and secondly, that Jack can cook. In my mind, all you really need is good company, good food, and when the sun sets over you and everyone has gone home and you are stuffed with that good food from the table and your ears are bursting with that good conversation that only happens when a level of intimacy exists, finally, a good book.

Crumbling, veiny blue cheese, applewood smoked chipotle cheddar, and the mild dill havarti, along with a fruit plate, was the first meal we shared together. It was an excellent aperitivo to the hamburgers we ate in the cloudless Indiana afternoon.

Nights were spent feasting on the back porch while the sun set. We talked about everything. From family dramas to blended families to living with ALS to the crazy shenanigans Jack and Sam got into when they worked together at the Fresh Market.

On our last night, we ate the best smoked meat, tri-tip roast for those interested, that we have ever had. I am new to smoking meat, but it definitely makes a difference. Jack not only smoked the meat but the green beans and the corn on the cob as well.

In between meals, Lisa and I discussed books and our favorite authors and how important reading is to our state of well-being. Literally. If you are a reader, you understand how much a person’s bookshelf (or lack of bookshelf) says about who they are. Better than any introduction, let me look at your books.

Sam and I left these two amazing people, and the humidity-free state of Indiana, reminded how important friendship is and how many incredible opportunities have arisen from his disease.

I was discussing with my brother-in-law how burned out Sam and I are of asking for help. It is a constant source of worry to us that we are too much of a burden and that people will question why we can’t do it on our own. But he pointed out what an eye-opening opportunity it is for him to watch how many people band together to get us whatever we need. That’s when I realized that a little community has surrounded us, and in this technological, post-modern life, we long for community, a sense of belonging almost more than anything else. Although this disease can be very isolating, we do have that. People may be making laps around us, but they stop to see if we need anything on the sidelines.

Letter to spring — and you!

“When spring came, even the false spring, there were no problems except where to be happiest. The only thing that could spoil a day was people and if you could keep from making engagements, each day had no limits. People were always the limiters of happiness except for the very few that were as good as spring itself.”

— Ernest Hemingway, A Moveable Feast

 

Happy ALS Awareness Month and National Mobility Awareness Month, friends!

Yes, May is a big month for us. In fact, the past few months have been big and very busy. In our Valentine’s Day letter I wrote about how we were planning a trip across South Dakota. We ended up doing it, thanks to the continual generosity and concern of so many of you. From Mount Rushmore we made our way up to Devil’s Tower National Monument in Wyoming, ending up (eventually) in Big Bend National Park, located at the western tip of Texas. With only the Rio Grande separating the park from Mexico, Big Bend is the stuff dreams are made of. I cannot even begin to describe this place to you, but I will try. The sun seems to set forever, and each passing hour reveals new beauty in new ways. It feels as if one moment the place is on fire and the next you are enveloped in complete, secure darkness. Desert, mountain, and river collide into a place you want to stay forever.

Sam and I felt very impressed with ourselves when we were able to identify a bird or flower from our little books — Oh! There’s a leuchtenbergia principis (agave cactus)! A bubo virginianus (great horned owl)! Every morning we woke up to the sunrise in our cabin in the Chisos Basin. We hopped out of bed, dove into our breakfast at the lodge, and drove over 50 miles of paved roads. We stuck our toes in the Rio Grande, licked our ice cream cones in the Chihuahuan Desert, and watched grand sunsets in the mountains. It was spectacular.

Another big trip we made was to the ALS clinic at Vanderbilt University Hospital. We delayed coming here for as long as we could. Let me explain why. An ALS clinic is the meeting of a bunch of ALS patients all visiting specialists, ranging from physical therapy to assistive technology to pulmonology. Patients with all degrees of progression come here, so needless to say, I was hesitant. But, like so many things about this disease, the reality wasn’t what I had built it up to be. I will say that with the exception of one patient, Sam was the youngest person with ALS by at least 25 years. The good news is that Sam’s vital lung capacity remains over 100% and his speaking and swallowing capabilities are strong, too.

In other ALS news, Sam is adapting very well to his new electric wheelchair. What an awesome addition! Sam and I are now able to go for walks together and cook in the kitchen. He also enjoys chasing our dachshund, Conner, around the house!

So, what do the Happy Harpers have in store next? At the end of this month, Sam has another appointment at Massachusetts General Hospital for the Ibudilast clinical trial. At this visit, they will complete another PET/CT scan to test for how the drug is treating the inflammation in Sam’s brain. We are six months into the trial with only a few more months to go. Immediately afterwards we are headed to the Indy 500, thanks to the generosity of some very dear friends.

So, what is our biggest challenge currently? Accessibility. Sam needs an accessible wheelchair van in order to take his new wheelchair on trips, to medical appointments, and for everyday adventures and excursions. If you feel inclined to help and to share, here is the link: https://www.gofundme.com/afastandfurioustransporter

Just know that every prayer, dollar, and helping hand does not go unnoticed and unappreciated. You all are as good as spring itself.