If You Can Dream

If you can dream — and not make dreams your master;
If you can think — and not make thoughts your aim;
If you can meet with Triumph and Disaster
And treat those two imposters just the same.

Rudyard Kipling

I have to apologize. It has been a busy summer so we have not had a lot of time to write a blog post. Pool days, baseball, fishing, house fires, yada yada…  I thought maybe it was time to write something. 
Just to give a quick update, everyone in the family is doing well. The boys have been loving getting out to the pool and running with a pack of friends as tireless and barbaric as they are. The NAC has been incredible. Also, Maria had the crazy idea of taking an RV trip across America in October so Caitlin has been busy feverishly planning that trip. A huge thank you to the friend of a friend who is giving us a great deal on the rental! I got my seventh injection of Nurown so I had a few days in bed recovering. When I was not watching Caitlin’s shows with rampant scenes of shirtless Jason Momoa, I had some time to sleep and think. I wanted to share some of my thoughts. 

I am not sure if this is a shared experience with other ALS patients, but I often dream that I am completely healthy. The dreams would be mundane to a healthy person, but to me they are extraordinary. I will find myself going for a jog, playing catch with my boys, or swimming in a mountain lake.  Last night I dreamed that Caitlin and I were sitting by a campfire and I wrapped my arms around her and held her until she fell asleep. It was amazing. 

When I first started having these dreams I would wake up with severe disappointment at the reality of my life in contrast with what I had just dreamed.  Then I taught myself to repress these feelings and just not think about my dreams immediately upon waking. This was effective, but I came to believe that God made us capable of dreams with purpose and intent. I felt I was doing myself a disservice by ignoring them. Over time I began looking forward to these dreams as a respite from the daily struggles of living with ALS. 

Recently I learned that it is safe if not rational to see these sorts of dreams as aspirations.  Life really has a way of making impossible things a reality. Eight years ago I thought my life was ending when I learned that I probably had ALS. I thought I was fortunate that I had been able to marry Caitlin, have a child, and see the world with the Navy, but my useful days were behind me. In reality these past eight years have been the most difficult but rewarding years of my life. Not only that, I learned that you never stop growing and there is so much to learn from the people and things that God puts in your life.

For example, through an unbelievable series of events I received my first treatment of Nurown in December of 2018. Before my first injection, if you had told me that in twenty months I would be sleeping without a bipap, walking around in the pool, scarfing down ribeyes and riding for hours on the elliptical, I would have been too cautious to let myself dream it. Now it is my reality. As science and technology advance, and as I continue to be supported by amazing people, I am learning every day not to put a cap on Hope out of fear of disappointment. Of course nobody knows what tomorrow will bring, but I will allow myself to hope that I can once again hold Caitlin in my arms. If the dreams don’t come true, I can at least enjoy them. And in my waking hours they can give me motivation to take that extra step. I guess that is all anyone can do.

A good friend and I were floating in the pool the other day and discussing the brilliance of Bob Dylan. When I was in my twenties, I thought I knew what this song meant. Now I am 37 and I am happy that I have no idea… 

Bob Dylan – My Back Pages

I love America!

God bless America, land that I love
Stand beside her and guide her
Through the night with the light from above.

Irving Berlin

I think I have mentioned before, but if not let me repeat. I am the granddaughter of an Army officer and a Naval officer. The daughter and niece of Naval aviators. The wife and sister-in-law of Naval aviators. We have friends who are in the Marines, Army, Navy and Coast Guard. We have lost friends who have given their life in service of our country. My blood runs red and blue and I’m pretty pale so one can safely say I am literally red-white-and-blue. I was raised to love this country.

Recently, this country is going through a very difficult time. We have a president in the White House that a lot of people don’t like or respect. This flu-like disease in China became a worldwide pandemic. We have watched our cities burn and be destroyed. A lot of us were and still are scared. Then there are those of us who want to live outside our homes again. To see our community and be around those we love. Some watched over 8 painful minutes as a man died needlessly at the knee of someone who had sworn to protect us. So what do we do? What do we, as a nation, do at this time?
A beautiful thing about America, which is something that I think is getting lost in all this constant talk about Trump and the pandemic and Black Lives Matter and police brutality, is that we enjoy freedoms that would get people in other countries imprisoned or killed. We enjoy these freedoms because 244 years ago a bunch of revolutionary men got together and wrote The Declaration of Independence. They followed 13 years later with the United States Constitution, which in my opinion is the most awesome piece of legislation. It’s awesome because it allows for change. The Founding Fathers were absolutely brilliant in their hope and foresight. Their hope that this nation they created would still be around for years, decades, millennium to come. That this new nation would become great and prosperous and become more than they could hope to imagine. And their foresight to realize that if the United States did endure it would not be the same country as 1789. They expected Amendments and changes and put mechanisms in there to allow for the time when there needed to be change.

The United States Constitution and The Declaration of Independence

We are in a time when we are trying as a nation to decide if we still want that America. I do not believe that everyone in Washington wants that America. I think there are people in DC that do not put America first. They put themselves and their craving for power ahead of America. And they are preying on insecurities and fear to keep their power. That is something that scares me.
It saddens me that I have an American friend who lives outside this country that does not want to come back. It saddens me that any son or daughter has to worry about being treated differently because of the color of their skin. It saddens me that this place that I truly love so much is in such turmoil right now and that the people we have elected to DC are not doing their jobs. If they were my children I would put them in a time out. Step back, take a breather, stop blaming each other about the mess and just work together to get it cleaned up.
My whole life I have been surrounded by veterans. I have been surrounded by men and women who put their life on the line for this country. For every color, creed, language and origin of people in this country. My grandfather didn’t say he would only go fly in WWII if it was a country of whites. My dad didn’t fly over the Middle East for only the men of America. My husband didn’t deploy for 10 months to only protect Christians in America.

Matt at NIACT in 2009

So, confession, I listen to talk radio. A lot. Yesterday, I kid you not, Karen called in. She was so sincere in her call that I found myself getting a little choked up with Karen. She told the host about finding her late fathers birth certificate. Karen was brought to tears because under “ethnicity” it said “American”. Think about the last time you filled out a doctors form, or insurance form, or any questionnaire. Is there even a box to check under ethnicity that says “American” anymore?
I hope one day in the not-to-distant future we can look back on 2020 and say it was a DOOZY. I hope the number of people who love America outweighs the number of people who do not. I hope one day we can all check a box that simply says “American”.

Solitude

I live in that solitude which is painful in youth, but delicious in the years of maturity.

Albert Einstein

For most of my life I fed off the energy of being part of the crowd. I have always loved my crew, team, or whatever organized group I have been part of.  I can’t think of a time from childhood on that I ever ate a meal alone. But with ALS there are so many obstacles to being social.  It is not any body’s fault. It is just the way it is. I have had to learn to love being alone. 
Most mornings when Caitlin gets up with the kids my body is not ready to start moving. I can hear the boys out there wrestling with each other, eating breakfast, or watching a show in the family room.  Caitlin has always been comfortable in her independence so she likes to go outside and work in the garden or do other chores around the house. Thankfully I am getting physical therapy in the mornings now, but while I lay there and wait, I am already working on warming up my patience muscle for the day ahead. 

Sometimes we get early morning visitors to our bed.

After my body is able to move enough to get up, I have to do my two hour morning bathroom routine. Caitlin takes a break from chores to get me situated.  She makes and carefully places my 1,100 calorie breakfast smoothie in front of me. But this bathroom routine is not a time she or I want to spend together, so it is another opportunity for quiet reflection. Well, not entirely quiet. Only a few rooms away carries on the perpetual ruckus of our three savage kids.  I hope one day I am able to tell them how their shenanigans saved my life on a daily basis. 
In the afternoons we are blessed to have our wonderful au pair Maria to keep the boys busy. On the good days Caitlin takes me to the gym or the pool.  She will either set me up on a float or put me on the elliptical so she can either do her workouts or run errands. But I am never alone. There are always friends who come to check on me or even stop what they are doing for a while to hang out. On these good days I am reminded of how much I love people and it makes me so happy just to see their smiles. On the bad days Caitlin still has to run her errands and workout so she puts me in bed where I will be safe. The boys are usually out somewhere with Maria and the house is so quiet. This is an opportunity to pray and meditate and just practice patience. 

By night time we are all together as a family having dinner and telling everyone about the best and worst parts of our day. My parents make dinner for us a lot so I get to see them too.  My Mom talks about work and my dad grumbles about the news.  Maria tries to get the boys to talk about something other than burps or farts.  Caitlin will be weighing her food for the latest iteration of a diet program that I have tried unsuccessfully for years to understand. I am just grateful to be around everyone. For me this is what I live for. 

I live for night times with my boys.

Night time can be tough.  Caitlin is always nice enough to get me situated in bed before she tucks in the boys. Sometimes she falls asleep up there snuggling, but I don’t mind. If I need anything I can just make an announcement on the Alexa and she wakes up. The hard part is if I wake up in the night with a muscle spasm or a limb that has fallen asleep. I have to make a choice.  I can shimmy and roll around on my own to try to resolve it, but I always end up waking Caitlin up with what she calls “a snortin’ and a fussin'”.  The other option is to wake her up and ask for help. I try to do this sparingly because the health of a caregiver is top priority and she needs her sleep in order to maintain her status as family MVP.  Most of the time I try to fall back on the training I got in Navy SERE school. I breathe through the pain until it ceases to be a focal point. When it gets to the point where I feel like it is doing actual damage to my body, I give up and call out for Caitlin. I don’t know why, but this always leaves me feeling more defeated than anything else. 

Then morning comes and we repeat the evolution. I have learned to confront my aversion to solitude. I think it stems from childhood fears of not being good enough by myself. I am grateful that I have had the time and opportunity to really confront that vulnerability. The other day everyone was out of the house and the power went out. I was in bed alone and awake for three hours with no way to call anyone. A spider crawled up my arm over my throat and face and down the back of my pillow. He was good company when he was there but other than that I was able to train the muscle of my mind and be proud of myself for the growth I have made in what was once a major weakness. I guess I can can thank ALS for some things. I definitely don’t take human interaction for granted and have even learned to appreciate the gift of solitude.

Falling Apart

If you’ve ever fallen down and lost your spark, get back up as the whole damn fire.

Healing Light

Everyone does it. No one has it all together. Not everyone is picture perfect. Even people that say “here is the real me to show you my life is not Instagram perfect” but their “real” picture is still perfect. Yea, not fooling anyone. They took that picture probably 15 times before getting one they liked enough to post. Matt and I promise to be as transparent as we are comfortable being about our life with ALS.
If it makes you feel any better, sometimes I have to read his posts 2 or 3 times to get what he is saying! He is on a different intellectual level than me. He has lots of time to sit and think and ponder. He enjoys letting his mind wander into spaces that I never let mine go. Matt has always been that way. He likes staying a little off the beaten path. He is so different than me in some ways.
I write as if I am talking to you in person. I forget what it is actually called, conscious stream, maybe? Then I go back and edit for about a day or two to make my ramblings make sense. I am so much better at talking on paper than talking in person. I don’t have quite as much time on my hands as Matt does so I don’t delve in to the bigger issues, such as why mosquitoes exist. I’ve been this way for as long as I can remember though. I get through the day by doing what needs to be done, make a list and accomplish it.
Matt and I got in a fight the other day. I don’t remember what started it. Probably something to do with this never ending social distancing and being around the same 3 little boys who sometimes want to start WWIII in our house and trying to being mom, caregiver, teacher, cleaner, etc. When I get stressed I tend to yell at people. Matt doesn’t yell. I think me yelling started it. Anyways, I got defensive, he got accusative, I got critical, he got silent. It was the usual way we fight, and have for the past 18 years.

Learning in PJs

And then he made a point that at first was difficult but now I appreciate. He said something to the effect of “You look for problems. I don’t do that. I don’t look for problems.” When he saw my face and whatever words I was about to hurl at him he quickly followed with “But you see the problems and you try to fix them. And we need people like you in our world.” Good save babe! It might be one of the fundamental differences in us. In everything, Matt looks for the good and I look for the bad. Not that I hope to find the bad, but I want to be prepared for the worst. I would rather expect the worst and be pleasantly surprised than hope for the best and be let down.
I notice the pillows aren’t displayed straight in a store, the boys didn’t try hard enough in their game, the yard guys didn’t get the leaves out of the corner near the fence, the touch-up color on the wall is just slightly different than the original. All these are things Matt would never notice. He is not wired that way. They are glaring to me and I can’t let them go. I’m not wired that way.
And now we have this HUGE problem. My husband is dying. I can not fix it. No matter how hard I try, or what I do, or who I take him to, I can not stop my husband from dying…and most likely before me. Sometimes my insides feel like they are expanding inside of me and I find it hard to breathe. I can feel the frustration and irritation sitting on my chest and crushing it. What I am trying to say is that I fall apart. And when I do it, I do it spectacularly. Fortunately, most times, I can hold it in until I have a moment alone. There are ugly tears, hitting the steering wheel of the van until my hands hurt, sitting on the floor of the shower until the water starts to get cold, screaming words that would hurt if anyone else heard them, snapping at the family and then turning myself off and becoming cold. My mind races down a million different paths at the same time. I can put myself on autopilot and most people can’t tell I am having an internal struggle. It can be suffocating.

Dress-up as Daddy

I was taught that hard work and perseverance can get you anywhere you want to go. Faced with a problem that hard work and perseverance can’t fix is difficult. Some days I don’t want to hold it together any more. I want to be angry and hurt and sad and to mope. People have told us, Matt and me, that we are inspirations and we handle this all so well. In fact, I think most of the faces of ALS probably get similar comments. I think that in order to put yourself out there you have to have that good face out in the world. But I’m going to venture that in their home, their safe place, it isn’t always smiles and laughs and joy and thankfulness.
I am eternally grateful Matt has the slow mutation of ALS. It’s been probably 8-9 years since his symptoms started. He is doing awesome and I am so happy to get the time I get with him. I am beyond grateful that he gets to be with our kids. That he can still roll for walks with them and talk to them and snuggle in bed at night. But, as grateful as I am for all that, I still have my moments when I am REALLY angry. I’m angry this happened right as we were about to start our family. Why couldn’t this have hit us at 58 instead of 28? I’m sad Matt will likely never get to coach the boys in t-ball or do Boy Scout stuff together – the 2 things he was most excited about doing with his son. That he never got to really hold and snuggle Pax when he was born. I’m angry that right as our life was gearing up – Matt finished flight school, he got selected for the jet he wanted to fly, we bought our first house – we got stopped in our tracks. And I get sad. I get sad about all the things we have lost to this disease. I get sad and a little scared thinking of all the things we could lose to this disease if researchers don’t find a treatment/cure. We, okay me, had so many dreams about this life we were going to have together and they got blown apart. Sometimes its really hard to be OK with it.

Fall 2010, symptoms had started but we were told everything would resolve with physical therapy

However, I still have him, Matt. He is annoyingly good at not sitting in the funk or letting me. He believes that he is still here because his purpose is not done yet. And he believes we have yet to see what my purpose is for being here with him. God, I hope he is right! Matt helps me remember that we still have it good. That there are others that have it worse, both in ALS and outside. There is no good to come from being in the bad angry place.
So, friends, I hope you have someone like Matt to help you out of your darker places. I also sincerely hope you realize it’s OK to go to those darker places, anger and sadness and hurt, as long as you come back to the rest of us. I hope you have someone you feel safe with to let your mask down. That just because you put yourself out there as a “role model” to others you don’t need to always put an Instagram filter on your life. Falling apart is going to happen but you are too beautiful to not put back together.


Because I like to relate everything to a song, this played on our Alexa and led to this post.

Homecoming Queen • Kelsea Ballerini

Correlation Does Not Imply Causation

You never know how strong you are until being strong is the only choice you have.

Bob Marley
circa 2004

When times are uncertain we want desperately to find a way to convince ourselves that we have things figured out. We are in control. This is why, in the Covid 19 era,  there has been an absolute fire hose of people pointing to loosely grounded cause and effect anecdotes about the disease in the hopes of confirming their own biases.  We have all heard things like “States with Democrat governors have the highest mortality rates” or “Countries run by women have the least numbers of infections”.  While it may be comforting to our egos to latch onto these tidbits as they come along, it actually serves no purpose in gaining understanding about the spread of the virus. As it turns out, we know very little about most things. 

I’m going to take this back to ALS, because this is a blog from a guy and his wife with the whole tweed jacket and ALS backdrop. One thing that seems to surface again and again is a  commonality in the diagnosis story as told by patients.  It starts out with a back story about a love for sports and fitness since childhood. Then “I was in the best shape of my life when I started to notice (insert sign of early motor dysfunction)”.  I and many others have been drawn to conclude that extreme fitness causes ALS.  It’s perfect because it seems to be repeatable, there are plenty of high profile athletes with ALS to give anecdotal support, and it gives a little boost to the ego to be cataloged with the likes of Lou Gehrig and Catfish Hunter (both insanely good athletes).  The problem is that, while there is undoubtedly a correlation between being shredded and getting ALS, it is not scientific to suggest being jacked causes ALS. 

circa 2008

There are a ton of scientific explanations for why we shouldn’t jump to conclusions, but the simplest one is the lack of evidence from counterfactual states.  Remember that all squares are rectangles but not all rectangles are squares?  Well we are more like parallelograms in this example. The overwhelming majority of extremely fit people do not get ALS. Furthermore, some couch potatoes DO get ALS. So while it is accurate to say that a lot of the people who get ALS were fit, you can’t say that all of them were. Nor can you say that all fit people get ALS. Thank God. 

ALS survivor, Sarah Nauser-Olsen

Another problem is that we don’t know when and how ALS starts to affect the whole person. At face value it seems logical to suggest the fitness came before the disease. But recent research suggests changes at the cellular level occur years before noticeable symptoms. This means we have to allow for the possibility that something in the pathology of the disease makes a person more inclined to be an absolute beast. So even if we do definitively link athletic domination to ALS,  we are still left with the question of what came first. The chicken or the egg? Aside from chiseled abs and godlike speed, there are a lot of other factors to consider if you manage to make a clear correlation between extreme fitness and ALS. Are there other factors common to athletes that can also be considered as ALS risk factors to non athletes?  Some of the hypotheses I have heard range from head trauma and exposure to pesticides to something as simple as a high protein diet. And that really gets to the heart of the issue. The possibilities are not limitless, but there are certainly more than any individual could analyze without help. 

Fitness industry and ALS community leader Augie Nieto

I do think we have an important clue that can lead us to more clues which in turn lead to more.  That is how the people with the big brains paint a complete picture. And that is actually why I wrote this blog today. While it might be comforting for  us to simply draw our conclusions, there are smart people doing the hard work of questioning every conclusion, and they are doing it on our behalf. At The ALS Therapy Development Institute,  The Precision Medicine Program (PMP) is the most comprehensive and longest running translational research study in ALS.They are looking at these questions and so many more to try to piece together this puzzle.  Unfortunately like most non profit organizations they are having a difficult time keeping up with operating costs.  Augies Quest has been tireless in keeping the lab open in Cambridge and keeping patients connected to the research. 
If you are fortunate enough to be in the position to give during this period of uncertainty, and you want to help unravel this mystery to save lives, I can think of no better place than Augie’s Quest.

Augie's Quest | ALS Therapy Development Institute

Why Are Mosquitoes Even A Thing?

” For the ones who had a notion, a notion deep inside
That it ain’t no sin to be glad you’re alive”

Bruce Springsteen

The other day JP asked me a question that I was not able to answer. He asked “Dad, why are mosquitoes even a thing?”.  Behind that question are so many essential assumptions that really force you to reflect on what you believe. In JP’S eight year old mind, he begins with the assumption that things ought to be a certain way. That is because unlike many adults he has not yet suppressed the innate knowledge that there must be something greater than ourselves. I hope he never does. 

Barefoot in the stream by my parents house

The 17th century mathematician Blaise Pascal correctly described a “God-shaped hole”  in the heart of humanity. The problem is that if we are to believe in this God, we want desperately to believe God is benevolent and has our best interests at heart. So why then are there mosquitoes, and why do family pets get old, and why do daddies get sick? 
The problem of pain is probably the most difficult theological question, and I suspect this is why so many lazy thinkers have come to equate atheism with intellectual superiority. But even the most aggressive deniers of divinity just create a new paradox by turning around and discussing the way things ought to be without any foundation or authority for their intellectual principles. 
If it seems like I just glossed over and insufficiently defended my position, it’s because I did. The point of this blog is not to debate the existence of God, but I thought it was important to briefly explain that I believe in a benevolent God.  But how do I address the problem of pain?  I accept that I am a child.  
If I tell Kip he can’t have a second hoagie, he does not understand. It all seems so unfair and maybe even…painful to him. It is a decision I make because I have a broader perspective and more knowledge than Kip that lead me to the conclusion that a second hoagie will do more harm than good. I have faith that in my pain I also lack a greater understanding and knowledge of a bigger picture. I fully admit this comes down to a personal choice.

More importantly, we have to ask ourselves who we would be without our pain. Think of it this way. Everything is relative and what we experience as reality is actually just a never-ending stream of our own interpretations of sensory inputs and value judgements. Like the zero to ten pain scale that the doctor shows us with smiley and sad faces, it is completely based on our subjective assessment. All things being relative, if you remove pain from the top end, it would only shrink the scale. And that means less magnitude for joy at the opposite end of the spectrum. 
The reality is that we are not our pain or our pleasure. We are the experiencers of both and so much more. If you step on a Lego with your bare foot, your attention is immediately on the resultant pain and probably some anger at the person guilty of leaving the Lego in your path.  But you are neither the pain nor the anger. The more you separate yourself from what you are experiencing, the more you realize that you are an observer with a ton of freedom to make choices on where your attention rests. In this regard pain ceases to be something that has to be the fault of God, or science, or the kid who forgot to clean up his Lego even though you reminded him a thousand times. It just is. And you control the only thing in the world you ever could, your choice. 
In the 14th century there was was a woman named Julian who lived in the city of Norwich, England during an incredibly brutal era. In fact, everyone she knew and loved was killed by the plague, or during one of the several wars that ravaged the city. Stricken with poverty and alone Julian came to live in a gap in the wall of the city’s church. There she meditated, and prayed and she wrote.  In fact, she wrote the single most self actualizing statement I have ever read.  She wrote that ‘All shall be well, and all shall be well, and all manner of thing shall be well.’ I understand that this will mean different things to different people, but it is what I have chosen to believe. This belief has allowed me to keep living my life with Faith, Hope, and Love. 

To Fear or Not To Fear

I refuse to live my life in fear.

Fela Kuti

World, welcome to life with ALS! Stuck inside your house? Check! Hours spent with only the ones you love? Check! Already binged every worthwhile Netflix series? Check! Worry about catching a respiratory infection that fast turns to pneumonia and you drown in your own mucus? SUPER Check! Every flu season this is generally the life of an ALS patient and definitely the life of more advanced ALS patients – think those on permanent ventilators. Before you get all upset and scream “This IS NOT the flu!”, I know. It’s not the flu. But how you respond to this uncertain time is something you are going to look back on and think “Wow, that was tough but I was awesome” or “Wow, that was really scary and we were lucky to make it through”. Which do you want to be? I want to be awesome.

Screenshot of Google search “coronavirus recovery rate”

I choose not to watch the news. I don’t like seeing the death tolls and the mortality rates scrolling across the screen constantly. I don’t let the kids watch it because the sensationalism of the American media is disturbing. The culture of fear they have instilled in society at the moment, I believe, is unnecessary and harmful. It is an uncertain time and they are not making it any better. There is probably nothing you can say to make me change my mind. I see parents who are sitting in their houses, freaking out, afraid to go for walks or let teachers caravan through their neighborhood. Friends who have completely healthy families who are now convinced that this coronavirus will land them all in the ICU. It most likely won’t though. The vast majority of people are going to recover. There are people walking around with this virus that have NO symptoms. While we don’t want anyone dying, this is not a virus like Ebola that does not care about your age, race, health status and if you are a healthy individual you stand some good chances of making a full recovery and leading a normal life. That is not true for everyone, with or without coronavirus. So from this side of things, living with a man who has a disease with 100% mortality rate, can I give a little perspective?
I have one friend who we see almost daily – before and after Pandemic 2020. Every morning I take the boys and the dog for a walk around the neighborhood. On nice days we get to do the “Hause loop”. It’s the longest walk we can do in our neighborhood and it’s nicknamed that because we go by, wait for it, the Hause’s house. We are really original at the Bellina house. Our boys scream for the Hause’s to come to the window or front yard so they can say hi to each other. It’s the highlight of their life right now. I was talking with the mom who is anxious about all this as she is pregnant with twins right now. She’s worried about not having her husband with her when she delivers. Worried that she will get sick and compromise the babies. She could easily go down that rabbit hole but she doesn’t. Because she has perspective. Yes, this disease is especially nerve-wracking for her, but her husband dying in a car crash is more likely. You control what you can and leave the rest up to whatever it is you believe in, fate, God, etc. They are doing everything they need to to limit their contact with the virus. They don’t go out shopping. Her husband washes his clothes when he gets home from the grocery store. I can’t say with certainty they will be fine but I’m going to guess that they will survive this pandemic even though they let their kids outside to say hi to ours. They are choosing to live life instead of live fear.
Another person we have in our life is a mom of one of Kip’s classmates. We aren’t good friends, but we have been in the same orbits for about 5 years now. She has breast cancer, metastatic breast cancer to be specific. This means that no matter how hard she fights or different treatments she tries, she has cancer that has spread inside her body. Norine has 3 kids, little petri dishes. I am sure she kisses, hugs, loves on them when they get home from school even though her immune system is compromised from whichever treatment she is trying to contain her disease. She drives to school and walks in to pick up her daughter. She smiles, laughs, hugs other people and is a ray for her kids (and others) even on the days where I am sure she feels like crap. I see her at the baseball fields in the spring, slathered in SPF with a headscarf on cheering on her sons. Or when she can’t cheer, she is in the stands for them to see and know their mom is there. When she is especially compromised she keeps her distance from others because that is what Norine has to do for her life. But I never see this woman stop her life because she is sick. She is smart about her disease, she is smart about her precautions, and she is living a life she can look back at and say “Wow, that was tough but I was awesome.” Norine does not live fear even though it would be so easy for her to do so.
Now something I know a little more about, ALS. We have been driving this course for 6 years. Matt being especially compromised the past 3-4 years. Pneumonia is one of the leading causes of death in ALS. ALS patients have decreased muscle tone, their diaphragm becomes compromised, they can not cough to clear their lungs, the weight of their chest slowly suffocates them or they choose to cut a permanent hole in their throat and live on a ventilator with skilled nursing care 24/7. This coronavirus turns to pneumonia in a heartbeat. Our lives have not changed much since the “stay-at-home” order except we don’t go to the NAC and I spend a lot less time and money at HomeGoods and TJ Maxx. I also wash my hands the minute I am in the car from the grocery store and wipe down anything that could have touched the cart with baby wipes. I think I am also drinking more wine so some things have changed. As a family that should be scared by this disease because Matt will likely be a part of that mortality rate, a family that is the ones being guarded by the order put in place by our governor, a family that has been in the ICU for a week plus while Matt fights to come back to us, we should be terrified. We are not. We are smart about what we should and should not do, smart about where to go and where to avoid. We have not for the past 4 years and will not now live fear. That’s not awesome. That’s not a life.

High Point Elementary School teacher on parade in Texas

Recently our elementary school was going to have a teacher parade. They were going to post the route so families could come to their doors or driveways or walk a little bit and stand on the side of the road and wave as the teachers drove by. I say this was a necessity for our children, our school and our community. It was cancelled. My frustration at this is something I can’t convey. The reason being told was that it was contradictory to the order to “stay-at-home” to give families the option to come outside to wave to their teachers. Fear is why it was cancelled. Fear that gripped some parents so tight that they complained to the school and ruined a happy moment these kids needed. Fear of living life in the face of a virus.
I urge all of you to live your life. You know your family and community better than the President, your governor, your mayor. You know if it is a good idea to let your kids in the room while you watch the news. You know if you want to feed off the fear gripping the country and world right now. You know if it is safe for your kids to ride bikes next to their friends – with no touching and distance. Do everything you can to minimize the risk of this coronavirus spreading, my family is counting on it. You know whether you want to look back at the end of this and see yourself as awesome or scared. I can’t say that one is exclusive to the other, but I can say being awesome is hard to do if you are living a life of fear.

Be a KIND person

Love could change the world in a moment
But what do I know?

What Do I Know? -Ed Sheeran

Let’s take a little break from the world of ALS and my thoughts on how to live and love through this disease. It’s healthy to take a break every now and again from anything. Helps gain perspective, from what I am told. Instead, I want to talk about my thoughts on simply living.
I have always had a good life. I know, believe me I know, I have a good life, so maybe I’m preaching from a soapbox. But I have had a couple hardships. Some that I feel like the world knows – thanks social media – and others that only my closest friends know. If I have had hard times then I believe everyone else does. Famous, smart, pretty, rich, everyone has real problems they do not broadcast to the outside world.

From then to now we have built a good life.

I try to stay off social media as much as possible. I mostly use Facebook for ALS awareness and to help promote any fundraisers and non profits we support and to Facebook stalk people when I am bored. On Instagram I post pictures of our kids, so my account is private. I only follow people I know…and fitness influencers. I have no idea how to use Twitter. I use Snapchat as a group text with friends because for some reason my phone doesn’t send or accept attachments in my messaging app when I am in my house. I try to stay off social media because I feel it’s a drug that is making us all so much more mean than we really are. And we have all taken the drug, felt the effects, and to a degree liked it! Don’t say you haven’t. Even the nicest, most loving people have probably typed something snarky that they would never have said to someone’s face. Regretted it later, but now it’s on the internet and can never really go away. It’s a great tool for spreading awareness really fast (hello Ice Bucket Challenge) but the pitfalls are too great for me.
Aside from my RBF I have the tendency to say whatever comes to my mind. I don’t have a great filter. Years ago, Matt made me promise to count to 10 in my head before saying something out loud so I could decide if it was really something that needed saying. This advice has saved me so many times. I think part of it is that I am not easily offended. Or if I am offended, I tend to get over it rather quickly. I was not always this way, but as I grew up and had life experiences I realized I didn’t want to spend my time being offended by other people. I was probably sitting around thinking about some slight and the other person was out there living their best life. I want my best life too! I say all this to make clear that I am absolutely, positively, in no way above anyone when it comes to being catty or unkind.
Back in 2016 I got in a pretty upsetting conversation with one of my best friends. Yes, it was about the election. We both walked away at the end of it still best friends and a little better able to see each others perspective. At one point though we talked about perceptions of people. Profiling people based solely on their outward appearance. It’s probably one of the most harmful things we humans do to one another. How many times have we judged someone before we ever took the time to get to know ANYTHING about them? I’m counting mine in my head right now…it’s a higher number than I want to admit. And I still do it. I don’t know if it’s part of the human condition. I haven’t been fortunate enough to travel extensively so I don’t know if it’s something that is worldwide but I have to assume it is not only an American thing.
I can only think of a handful of times I have judged someone and been right about them. Maybe that is because I should leave judgment up to another being. I will not get religious on anyone reading this. I will leave it at this: I was born and raised a Christian and it is a defining quality of my being. Whether you believe Jesus is the Son of God or a prophet or just some crazy guy from a long long time ago (in a galaxy far far away?), he is a true historical figure and his teachings are well documented. And he taught some amazing ideas that were crazy back then and now seem to need to be preached again. His teachings on how to treat your fellow human are something that I think we all could get behind.

It helps to have a really great family!

Be humble. We all have a self-importance. Hello, my husband and I started a website and a blog about ourselves. We must think we are important! Yes, we want to help others who are newly diagnosed and do not have 6 years of diagnosis under their belt, but also we think we have something to say that the world should hear. Try to listen to others when you are standing there preaching your truth. Accept that there are people in this world that will always know better than you and always be more important that you. And that is completely fine. That doesn’t take away from the awesomeness of you!
Lead with love. You never know the kind of day a stranger is having. A lot of times you don’t even know the kind of day your friend is having. Don’t just hold the door for someone, look at them and say “Hi” or ask how they are. I will work on it with you. I don’t like to talk to strangers. Strangers scare me. Actually interacting with a stranger makes my stomach do somersaults. Realize someone may be having a really bad day and your interaction with them might be the only bright spot they have. It’s hard to put others in front of yourself, especially if they are not someone you know. So start with someone in your life. Practice leading with love and I bet it will spread to other parts of your life.
Above all else, BE KIND. It is so easy to be catty and snarky. At least for me it is. When someone “wrongs” me it is so easy to pick them apart for every way they are obviously inferior to me. I’m not personally on the level to be kind to those people, working on it. But I am able to let it go. I try to not let them take up any space in my life if they are not worth it. However, imagine a place where people are genuinely kind to one another. Right now in our world it is happening. Because of this pandemic we are seeing so much good in the midst of the bad. If only it didn’t take a world crisis to highlight the awesome of humanity. People are posting videos of kindness with surprise. Wouldn’t it be great if videos of kindness were the norm instead of something shocking?
I believe each human is endowed with a heart so capable of kindness and love. Unfortunately, this world tries to steal that from us. It throws these awful things at us and tries to harden our hearts to each other. It’s up to each individual to figure out how they want to walk through this life and handle those difficulties. We can respond with cattiness, anger, self-righteousness and hurt. I challenge us all to take the bad times and accept them and let them pass. Maybe even work to a place where we can find the beautiful things inside the bad. Or even be the bright spot in the dark. We could light up the world.

Give a Hug

I have learned that there is more power in a good strong hug than in a thousand meaningful words.

Ann Hood

For some caregivers, maybe most caregivers, the loss of physical affection can be the hardest. Our loved ones, for the most part, keep their mental faculties about them throughout the entire disease. As long as you are open with each other and communicate like any couple it is not hard to keep an emotional connection just as you had before ALS came in to your life.
When our youngest was born, 4 days late and coming in as the heaviest of the 3 boys, we were not expecting a stint in the NICU. However, the day after he was born he “greyed out” during his hearing test and I came out of my first shower to the doctor in my room with my newborn son in an incubator saying he needed to be in the NICU. They thought he aspirated something and had pneumonia but quickly learned it was more serious. Pax got lines put in through his umbilical cord, a spinal tap and a host of other tests. It took him 18 days to work up the strength to eat and breath on his own and come home. Around day 10 of this nightmare I was sitting in our family room, surrounded by Matt’s parents, my parents, our other 2 kids and Matt. I started crying. I mean, really crying. Darn hormones. It seemed like he would never come home. My mom went to give me a hug and I kind of freaked out on her. I didn’t want a hug from her. I wanted a hug from my husband, and only my husband. The only other person who could possibly understand what I was going through.

Twins v. Yankees game in 2011

It has been over 3 years since my husband has been able to hug me. That’s really hard. I know some of our friends might be scratching their heads. It’s a joke among our friends that I don’t like hugs. Even my friends parents know this about me. But I loved Matt’s hugs. I loved lying in bed with him, snuggling him, spooning with him. My husband was really strong before ALS. Like freak strength strong. And there was no place else I felt more safe or cared for than when he would wrap me up in one of his hugs. When my head would fit perfectly under his chin and he would just encompass me. I used to lean in to him when we would be standing around to feel that reassuring strength.
To this day, I’m a big baby and get nervous staying alone. We have a large Rottweiler/Husky mix who would protect us to the death. I am a mama bear who would tear anyone to shreds if they ever threatened my children. However, if I stay at our house without Matt, I still get really nervous and KNOW there is some sort of ax murderer in our basement that has been there all day and is just waiting for me to fall asleep so he can creep up and do us all in. Makes absolutely no logical sense why having Matt there makes me feel safer. We “joke” that there is nothing he could do to protect us if my unlikely scenario ever came to fruition. I would have to be the one physically protecting our family. However, even in his limited physical capacity, Matt makes me feel safer. I still look at him as the freak strength 19 year old I fell in love with, except with a little more wrinkles and a couple creeping grey hairs. Even without those strong arms wrapped around me, I can feel them.
I still hug him, even if he can’t hug me. For the time being, his core strength is enough that I can transfer him from his wheelchair. He can support his own weight even if he can’t get that weight moving. Sometimes when I transfer him, I stand him up and just hug him. I put my head under his chin like the good old days. He kind of twists and throws his limp arms in an attempt to hug me, but it usually ends up his hands grazing my butt, which isn’t altogether a bad thing. I know he misses making me feel safe with his hugs and he is trying his hardest to give that to me. I can still hug him and will continue to do that as long as I am able to stand him up. Probably when he is confined to his chair or bed I will still do it too. I am not giving up my hugs.

A happy Matt when we realized the seat belt on his chair was long enough to secure both of them!

I can’t even imagine how hard it is for Matt to have never held or hugged our son while he was in the NICU. Or to hold Pax unassisted after he came home. Our boys are rugged, a trait they get from their father. (It’s actually becoming a little scary how much our oldest is like Matt used to be before ALS. And it’s not like he learned these behaviors from his father. JP says he remembers Matt up and walking around but maybe it’s only from pictures. JP’s messiness and physical demeanor are eerily like Matt’s.) The boys climb on Matt in his chair or when he is in bed. They aren’t really gentle with their father. He’s “Dad” and he’s meant to be climbed on/over/around without any thought of his own comfort. Almost every night they all pile in to bed with Matt and watch a show together. I usually sit on the other side of the room and watch the 4 of them. It might be my favorite part of the day. The boys kind of encompass Matt. One is on his feet, the other is next to him and usually Pax is either on his chest or his head. And you know what?! Matt loves it.
It is so important for ALS patients to get physical contact. People ask us if Matt can still feel his hands and legs. YES! He still feels everything. His sensory nerves are not affected by ALS, only the ones that make him move on his own volition. He can’t shake your hand but he can do a fist bump (as long as it’s not his driving hand, otherwise you can cause him to run you over!). He does enjoy hugs – I think. He doesn’t like it if you hover around the back of his chair and creep over his shoulder but sitting next to him while hanging out is great! Or across from him if you want to have a conversation so he can look you in the eye. Sometimes his voice muscles are tired and he doesn’t really want to or can’t speak. Just being a physical presence that is comfortable with the silence between you two is good. Not having to fill the void with idle chatter. Being physically present for an ALS patient doesn’t always mean touching.

On nice days Matt rides his chair to the boys’ schools to drop them off or pick them up, and the boys get to ride in style!

So, as a friend to a caregiver, or an ALS patient, give a hug. Sometimes I need them even if I don’t admit it. You might not be my first choice of a hugger and I might close my eyes and pretend you are someone else. Actually, I won’t, because that is weird.

How do you love someone who is dying?

“When someone loves you, they don’t have to say it. You can tell by the way they treat you.”

Unkown

I know what you guys are thinking…Wait! What? Matt’s not dying. You guys are so positive. You say he will beat this disease. There is so much coming for ALS in research and therapies. How can you believe he is dying?!
Easy. Last week he came a little too close to it for comfort. We let a cough go a little too long, it turned into a cold, flew into full blown pneumonia and at one point I was standing in the hallway outside his hospital room and the doctor told me I needed to prepare for respiratory failure and the measures they could take if that happened. Um, ‘scuse me?! It was a very long week with some time warpy moments where it felt like everything was being thrown at me really really super duper fast, least of which being my husband’s mortality.

I stared at him for about 5 days like this, except add an NG tube.

So guess what, Matt is dying. And he is dying faster than the majority of other people. There are people dying faster than him, but in a game of averages, Matt has outlived the average ALS patient. Fortunately, my husband has never been average. In fact, one doctor called his brain beautiful and exceptional, so that is a pretty ironclad medical diagnosis of extraordinary. Who needs second opinions?
Yes, we are absolutely optimistic and enthusiastic about everything coming out in the research community. And the drugs that are in trials right now look really promising. But as I have said, we don’t keep the rose colored glasses on all the time. Last week was a hard look at that. This disease is brutal. On Friday afternoon we picked up our brand new au pair in Chesterbrook, PA, and 12 hours later Matt woke me up saying he couldn’t breathe and to call 911. (I didn’t, I called his mom!) He was admitted to the hospital, in and out of ICU for the next 8 days. These upcoming therapies are not coming out tomorrow and today is all that we are promised, sometimes not even that. His mortality is something we have to face.

Welcome Alejandra Maria!!! What a first week in the USA.

We don’t live under a cloud of death. Matt is all around a pretty normal guy, minus the speech issues, loss of most motor functions and being confined to a wheelchair. He gets to the boys’ athletic and school events. He goes to the gym most days. He enjoys a beer and whiskey. Get a good rare ribeye in front of the man and it will be devoured. A hot fudge sundae with sprinkles, melted peanut butter and walnuts, topped with a cherry is his favorite bedtime snack. So although he has ALS, he is also living. A friend of ours has a song about it – some days he is getting by, others days he is living. No matter the type of day, I love him the best I know how.
I try to love this man without holding back. We tell each other multiple times a day that we love each other. I try to show him. I have outgrown my emotional teenage angst years and am not the most openly affectionate person. I show Matt love by getting him things I know he likes – ribeye for dinner, Smoothie King for lunch, kombucha when his stomach bugs him, matzoh ball soup when he has a cold. The man loves to eat. I show love through action. Almost every time I go to any store alone I look for a little something to bring back to him that shows him he was on my mind. To bring the world to him on the days when he can’t go meet the world.
I try to not show him my pain in this disease. As a wife, I miss out on a lot of the normal relationship things. I don’t show love for him through hugs and kisses and snuggles. Partly because it’s hard physically to do as well as emotionally hard. Also, it isn’t really “us”. Maybe it’s a good thing that Matt wasn’t one for PDA so it’s not something I miss as much as other spouses might. I wish we held hands more often before ALS. I know he knows that I miss our physical relationship – not like that, we made 2 kids after diagnosis – but the hugs and holding hands and kisses and generally being affectionate when it was the two of us. We used to do this thing we called “willy-wonka”. We would lay on the couch facing each other with our legs intertwined – like the grandparents in Willy Wonka – and watch TV or talk or read, just hang out. Lay in bed together and watch TV with my head on his chest and his arms around me. Now the weight of my head on his chest makes it hard for him to breath and we have yet to find a way to get his arms to stay around me, but we are still trying. I give him love by not showing I miss these things as much as I do.
I show him love by being his caregiver. I think both Matt and I can say this is not a role that comes naturally to me. I’m a constant work in progress with it. I have a short fuse that has hopefully grown. Being his arms and legs can be trying for me, especially if it was a rough night of sleep. I like my sleep. He is also about 50-60 lbs heavier than me and although I am strong, sometimes I have difficulty moving him. However, I know he is the most comfortable with me and he is not ready for outside help. When he was in the hospital he would have anxiety if he woke up and I wasn’t there. I guess I am kind of like his security blanket when we are out in the world. He knows I won’t let anything happen to him, unless I am the one to do it. My favorite thing is to give him a shave and a shower.
I love him by treating him the same as I did before he lost his physical abilities. We still fight. I still get really annoyed with him and let him know. I still pick fights with him when I am annoyed and then blame him. Matt is still in charge of our finances and I go to him if there is something I want and make sure it is in the budget. He still makes the final decision on the things our family participates in and where we go and how much we spend. He is still the head of our household in close to the same capacity as he was before ALS.

Back at home where he belongs.

You love someone who is dying the same way you love someone who is living. Our love is intense, complicated and very real. Like every married couple before and after us, it has had to adapt to the life we are given. There is not a way to fake love with this disease. I give him all I can of me and he reciprocates by giving his best to me. We have this family we built that has both of our hearts. I would not have that without Matt. I would not have this life without Matt, and as I have said, it is a pretty freaking great life. On the days this disease beats me down and I don’t feel loved or feel like loving, I remember I love him more than I love myself.