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.

It’s not you, it’s me

Of all possessions a friend is the most precious.

Herodotus

ALS steals more than our loved ones body. It steals time, friendships, relationships.
I am going to forget your birthday. I will definitely forget your kids birthday. I won’t text you back in any sort of timely fashion. I will turn down your offer to hang out more often than I will accept. I will almost always be late to anything we plan to do. I bring a lot of baggage.
Most of these things were true before we were even diagnosed with ALS. I remember sitting, drunk, in the hallway in college on the phone with my best friend and her being angry at me because I was talking about some guy drama, meanwhile her grandfather had recently passed away and this was the first phone call since his funeral. Not my finest friend moment. I have a tendency to get wrapped up in myself and my life. More so now that I am a mom and a wife and a caregiver. I know my faults and I work on them but I also fall back in to old bad patterns.
It’s not that I don’t want to be there for you. I would love to be! I would love to spend a girls weekend in some warm tropical place like I see some friends on social media. I would love to do something as simple as go to dinner and linger over dessert and drinks. I get to do that sometimes, but not as often as I would like. For me to do these things, it takes a lot of planning and sometimes I just don’t have the energy to do it, or I feel guilty asking my in-laws to watch the kids for the 3rd time this week, or I can’t find a babysitter. I really really want to be a normal friend, but I can’t be one right now.
I can’t leave my kids alone with their dad. At least not Pax, the other two are pretty close to the age where they can. For me to go anywhere I have to find and pay a babysitter, or ask the in-laws to watch the crazies. If it’s an overnight trip I have to find someone who can be with Matt overnight and watch the kids. I have to find someone Matt is comfortable staying overnight. As much as he loves his parents, having them stay with him at 36 is a little demoralizing. I can’t up and leave within hours of making plans. I need at least a week notice. It’s never Matt saying I can’t do anything, it’s me saying I can’t. My kids need me, my husband needs me. I work to find a balance, but first priority is home. If Matt is having a bad day or the kids need a parent, forget it, I’m out.
I get out. I go to the gym almost every morning. I go to dinner with girlfriends. Just the other weekend I spent a night in Philly with some girlfriends and got a rude reminder that I am, in fact, 36 not 26. These excursions from the ordinary take thought and planning and a little bit of guilt. Matt tells me all the time to not feel guilty over hanging out with my friends, but I can’t escape the feeling. I know it’s only in my mind, but it feels like rubbing salt in his wound. He can’t do it but I can and that’s not fair.
Sometimes I am just too tired to meet up with you. In our house, I do the physical work. All of it except what we are fortunate to hire out. Matt got sick of my horrible house cleaning abilities so we have 2 wonderful sweet women who come clean once a week. We also have someone cut our yard during growing season which is helpful but I do miss the smell of fresh cut grass. Other than that, most of the day-to-day stuff falls to me. Dishes, laundry (except when I send it down the road to Deb and Jim!), homework, cooking, you know, the normal every day stuff that every family does. And, I’m not complaining. We are VERY fortunate that I can stay home and be here for Matt and the boys. A lot of ALS families have to work to support their loved one. It’s just sometimes overwhelming and the thought of getting dressed and finding a babysitter for a dinner out is too much for my brain to handle.
Sometimes it’s coming over to your house that I will turn down. It’s awkward to get Matt in to a lot of houses and most are not wheelchair friendly. And that’s not anyone’s fault. But Matt then feels like he’s in the way and it’s inconvenient to accommodate him, or he gets stuck in a room and feels like a burden on whomever is in the room with him. He can’t move with the party. I love my husband, I don’t want him to feel like he is hindering anyone’s good time, so we stay home. Our home is literally made for him and his wheelchair and it is where he is most comfortable. All his stuff is here in case anything comes up. He doesn’t ever feel in the way around here. He can move freely throughout the house or wherever anyone wants to go. He doesn’t feel like a bother. So it’s not that I don’t want to come over, it’s just I can’t right now. But hey, our door is always open to any friend near or far!
So, I am not a good friend. I am a loyal friend. I love my friends fiercely and will protect them to the end. I will always be willing and able to be on the phone to hear about your day, or your kids, or your problems. I will try to make time for you and to be there for you physically when it is possible, but please understand that it will not always be possible. And I know I am missing big events. God, I hate missing those moments with you. I hate missing the small events too. Please remember that I agonize over whether I can make it to you or not and it hurts me to say no.
I know there will be a day when I can be a really good friend again. When I will be able to travel to see you and spend time with you and linger over dinner and dessert. I don’t like to think of that day because in order for me to be able to be freely there for you, it means I am going to lose something even more precious than our friendship.

Does Wonderwoman know she’s Super?

“Love is the only engine of survival.”

Leonard Cohen

People tell me they admire me. It’s a very weird experience for me. I am not comfortable with it. I’m not a particularly admirable person. I’m really quite average. I was thrust into an extraordinary situation and am dealing the best way I know how. So when a friend tells me that I “inspire” them, I really am baffled.
I get that our life seems tough to a lot of people. And it is tough. Living with ALS is no walk in the park. There are hopeless days. Days that are filled with tears and anger. Days where nothing goes right. But those types of days happen to EVERYONE. To differing degrees, but I can’t name a single person who is in a constant state of awesomeness. Everybody gets through those icky days a different way. I personally put my head down and literally push my family over the finish line. And then usually find a stash of chocolate somewhere before going to bed. To each their own.
Our life is extraordinary as well. Because of ALS we have had some amazing things happen that would never have happened otherwise. Flying to Colorado and Arizona to speak at events. Meeting the President and Vice President of the United States. Cultivating friendships with some of the top lawmakers of this country. I understand to the vast majority of America that these are not common things. I understand it would not have happened had Matt not been Matt and gotten ALS.

Ziplining at The Broadmoor in Colorado

Maybe that is why people tell me I am an inspiration. Matt has this intangible thing that elevates him above the average human being. People gravitate towards him. They trust him immediately and tell him some of their life stories within minutes of meeting him. He was telling me the other day that on his bus rides he used to take from our house in Richfield, MN into Minneapolis for work, there was one guy who was telling him he had completely ruined his life because he used to beat his wife. Not sure about you, but not a conversation I would have with a stranger on my morning commute. And that’s not the first time something like that has happened to him. It still happens to him. Sometimes I drop him off and go park the van and by the time I get back he is sitting with someone who we don’t know that is telling them about their fears for life. It really is crazy and I wouldn’t believe it if I hadn’t seen it for myself numerous times. Maybe some of his intangible has rubbed off on me over the years.
I have the opposite effect for the most part. I am firmly in the RBF category – Resting Bitch Face for those who don’t know. Some of my closest girlfriends have told me that when they first met me they thought I couldn’t stand them. It’s just my face. And I’m not an open person. I don’t radiate the light like Matt does. It’s more because I get very nervous and scared when it comes to meeting new people. I overthink and worry about first impressions, which is funny when my first impression is that of a bitch. I like to think that I am not and the people who know me can see that!

You see, I care what people think of me. At least what the people who I care about think of me. Strangers, not so much. But the people who I have in my life because I choose to have them there, their opinion of me matters a lot. For my own mental self-preservation, I can’t appear weak in front of them. A bit of my identity is wrapped up as the wife of “Matt Bellina, ALS advocate and extraordinary person”, the backbone that doesn’t ever bend. You need us in Washington tomorrow? I will figure out a way. Matt needs to meet with 4 senators this afternoon? I will walk, pregnant, around The Mall and visit the Smithsonians with our 2 kids while he does it. Want us to fly to Arizona? I will literally carry Matt onto the plane to get us there. You need our family to do something, I figure out a way to get the moving pieces lined up to make it happen. Failing to make it happen is not an option. It’s just survival.

Aside from survival, it’s love. Crazy, Stupid, Love. Isn’t there a movie about that? It’s the love I have for this man and his for me. I wouldn’t do the things I do for just anyone. I’m not that magnanimous of a person. It’s the love I have for my kids. I think most mothers would crawl across broken glass for their kids. This is a little bit the same. I want them to have the best lives possible and that means trying to keep their childhoods “normal”. It’s God’s love for us, as a couple. He put this obstacle here because he knew we would be able to scale it together. None of what I do in this ALS life is because of me. None of it is superwoman powers. I think a lot of cALS feel the same way and would tell you the same. It’s not super anything.
So, you see, it’s survival and love. I love this man, myself, my family, this life and I will help my family survive it. Although, I hope I can help them thrive, not just survive.

ALS, Risk Factors, Strategies and How We Live With Them.

If you are reading my blog then you probably already know that certain groups of people are more likely to get ALS than your average couch potato. If not, Google search ALS combined with family history, Veterans, Football players, Fire Fighters, Police, Elite Athletes, or Nice People.  Now that we are all on the same page, there are of course pressing questions about lifestyle choices if you have already been chosen for membership into the pALS club. 
I am going to go into a lengthy description for why I have made the choices I have made, but I really hope that nobody mistakes this for advice or recommendations. I am not a scientist, health care provider, nutritionist or even someone with an education in human health. Furthermore, ALS is such a heterogeneous disease it is very likely that you and I don’t share the same causal mechanisms in the unique pathologies of our illnesses. The only advice I will give is that everyone should discuss these things with  Healthcare providers. Now that we have that out of the way, here is a brief glimpse into the way I think. 

Exercise

Recumbent elliptical workout from August 29, 2019

If careers that demand fitness, and extreme fitness behaviors seem to lend themselves to more ALS diagnoses, that begs a serious question. Is exercise bad for ALS?  You can find plenty of experts who disagree with each other on Doctor Google and absolutely drive yourself crazy. The only consensus seems to be that light exercise and passive stretching is probably not harmful. 
The problem for me is that intense exertion and pushing physical boundaries is an essential part of who I am. I could limit myself and maybe prevent some harm to my body,  but in some ways I would be allowing an unhealthy atrophy to my soul. This is my priority. 
You see, I love going to the NAC and spending time with kindred spirits who understand the love of setting and achieving fitness goals. I love having my heart pounding and a burning in my arms and legs. I love when a friend sees sweat pouring down my face and into my eyes, and they come running to towel my face because they know I can’t.  I may be helping or hurting my body, but I made the choice that this is something I wouldn’t want to live without.

Diet 

Even healthy people drive themselves crazy trying to decide what they should or should not eat. There are a ton of things that could be harmful in the diet of an ALS patient. Some of the the things that have been suggested are refined sugars, GMO’s, MSG, glutamine, glutamate, aspartame, gluten, and about a million other things. You could spend every day reading the labels on everything you eat and probably still be getting something harmful. The other problem is that data seems to indicate maintaining a higher body mass index is somehow protective in ALS. The seeming opposites to conventional wisdom are absolutely maddening in this disease. 
I decided a long time ago to focus on taking in what I should eat rather than avoiding what might harm me. At the very least this has preserved my sanity. And it allows me to enjoy food. So now I just make sure I get at least 15-20 servings a day of fruits and vegetables and at least a pound of meat. I also try to get at least one fermented food or beverage to support the microbiome.  Beyond that everything is gravy.  Or pizza and fried chicken.

Supplements 

I am sure almost every ALS patient has tried a thousand different GNC pills or powders in the hopes of putting a a dent in the obdurate monster that is our disease. I am no different. I am not going to give any advice or recommendations here because I don’t know literally anything. I will say I trust my neurologist to give me a straight opinion on whatever I ask him. I also trust him to admit when he has no clue. I hope you have a similar relationship with your Healthcare provider.

Hope 

My reasons for Hope

There are a lot of ways to mentally cope with a terminal illness. Conventional wisdom would indicate that acceptance is the ultimate goal for living in peace with your illness. This is probably true. Hell,  everyone every one of us and everyone we have ever loved is going to die at some point. But even in acceptance, we have to allow for people who are born to fight. I like to think of all of this as a game that is most enjoyable when it is played to be won. That is why I get a lot of joy for all the reasons to maintain hope. Nurown works. Maybe not for everyone but we will zero in on that and soon.  Up and coming are Copper ATSM, T Regs, AT1501 and more things than I can keep track of. This tells me the game is about to get exciting. I can’t wait

Who comes first?

“Sometimes it’s the smallest decisions that can change your life forever.”

Keri Russell

When we decided to try for a second child within a year of our first, my friends in Minneapolis asked, “Why?!”. Not because they knew of Matt’s struggle but because our firstborn tends a little to what some might categorize as ‘crazy’. He crawled at 6 months, walked at 9, was high energy, and, in my humble opinion, was highly intelligent for his age. However, my response was always, “The second one can’t be any worse!” Our second came 2 weeks shy of our first’s 2nd birthday. He was a perfect scrawny thing that was opposite of his brother. He loved snuggles, being held and was thankfully a pretty chill baby. A cross country move and diagnosis later, I got it in my head we (me) really needed a third child. Like REALLY needed a third child. Matt was using a walker full time and wheelchair on longer trips. After a year of me asking (nagging constantly) Matt capitulated and let me have my way and now we have 3 handsome, perfect, rambunctious, crazy boys!
It’s a little insane to have kids in the first place when one of the parents has ALS. I completely understand couples that marry after diagnosis and still want to have a family. I also understand couples who choose not to add a little one. I am not sure why a couple would add a second, let alone a third child into the mix, but long ago I stopped trying to understand why I want what I want. A lot of times I don’t make sense even to myself. However, we found ourselves on March 4, 2017, almost 3 years post diagnosis, 5 years post preliminary, welcoming our third boy into the family.

Kip, Pax, and JP with fresh hair cuts

We went in eyes wide open. We knew that already the task of being the physical parent for the older 2 had fallen largely to me. At the same time, Matt was increasingly needing me physically. Adding a newborn was going to stretch us to our limits. Little did we know that this guy was going to enter the world and the next day be rushed to the NICU because he stopped breathing and then spend the next 18 days there. Matt was recently full time in a power chair but I would drive us back to the NICU every day and most days go back at night.
Looking back, it was a gradual entry into what has now become my daily life. Not that we still have a really sick kid, but rather trying to split myself into too many roles and then getting angry when it doesn’t go the way I want. Remember when I said ‘I don’t want to be angry anymore.’ Most times, I cause my own angry. I can admit that now, but catch me when I am angry and likely I will blame you. Matt and my mom can fully attest to this character flaw. Most of the times I feel stressed and upset are because I have in my head this image of the wife/caregiver/mom and I find myself falling short. I am fully Type-A and have a hard time letting go enough to have things any other way than what I believe is best. Instead of giving myself the grace to fall short – because everyone does – I start looking for external reasons why I am not living up to my image.
Enter ALS. It’s the perfect scapegoat, right? I mean, my life would be perfect if it weren’t for this disease. I have a gorgeous husband, healthy kids, live in a great neighborhood, have awesome friends, my list can go on. If it weren’t for ALS, I wouldn’t have to choose between taking care of my husband and taking care of my kids! And that, my friends, is the hardest part of being the mom and the caregiver. I have to choose who comes first. On a daily basis there are times I have to choose to help my husband or one of our children first. I won’t say I am gripped with fear that I will choose wrong, because to know me is to know that I can make decisions and pretty much think they are always right, but I have times where I wonder if my ‘right’ decision was actually wrong. When I have a chance to sit and think, “Does Matt feel loved?”, “How can I make Matt’s life better?”, “Today I will not get angry at Matt because it’s not his fault. Does he know I don’t blame him for all this?”, “Are the boys going to be upset because I chose Matt?”, “How long did I ask JP to wait?”, “Does Kip get so angry because I don’t love on him enough?”, “Is Pax being crazy because he needs more attention?”, “How bad am I screwing up my kids?”. The kids and Matt are equally important. The little guys might not need me in the way Matt does, but that does not lessen their need. In their brains, they need mommy. Full stop. In reality, Matt probably needs me more. They do not always understand that reasoning.
I am not going to lie. We were circling the drain. Maybe even halfway in the drain looking back. I was physically and emotionally beyond my limit. I can’t say I always made the right decision on who to help first. I really really hope I didn’t do any lasting damage to my children’s psyche but we will have to wait and find out. Matt saw and recognized my struggle better than I ever could and in his infinite wisdom found our saving grace.

Flying to Arizona

Her name is Adriele. After a couple fights, harsh words from both of us, tears and finally acceptance that getting help was not a sign of weakness in myself, I agreed to bring an au pair in to our home. (I know this is not a reality many families with ALS can afford. As I have said, we are extremely fortunate that Matt is a veteran and ALS is a service-related disease.) It might be the single most significant decision we made as a couple in our fight against ALS. Welcoming someone outside your family into your home might seem like a daunting choice but it was absolutely the right choice for us. We had a 6 month old, 4 year old and 6 year old. As I said, I was physically and emotionally unable to provide for them the way that they deserved. I have such respect and awe for single parents. It has to be the hardest thing to do. We were blessed to have Adriele in our home for 2 years – and are about to welcome our 2nd au pair in 2 weeks! Our boys love her like the family that she is to us. She was a mix between an older sister and a cousin. They tended to listen to her better than they listen to either Matt or me. She was another safe haven for them to land when Matt and I were not able to be there for them. It was also so comforting to know that our children were safe and loved if an ALS emergency came up.

Jim and Deb with the boys on Pennypack Trail

We have the added bonus that Matt’s parents decided to relocate from Massachusetts to Pennsylvania 2 years ago. By the grace of God a contract fell through on a house 3 blocks from us. Deb and Jim were able to get it before it came back on the market. We are able to walk to their house now and it is awesome for the kids. Our quality of life has gotten so much better with them living close.
I urge anyone fighting this disease, or any difficult struggle, to let the people in their life step up. Rather, let them show up. As I write this, I realize I am being a bit of a hypocrite because I don’t always take the help offered and almost never ask. If you accept the help, a neighbor bringing over food for dinner, a friend taking your kid to sports practice, an in-law doing your laundry, you are not being a nuisance. I often find myself feeling like that and say “I got it” even when I don’t. It almost goes without fail that then I find myself overwhelmed, having to choose between Matt and the boys and then getting angry at both myself and them.

At the starting line of the Philadelphia Rock ‘N Roll 1/2 Marathon surrounded by some of our NAC family and friends
L to R: Ernie Cousino, Deb, Kim Levins, Jim Worthington, Paul Stabile, Mark Masso

Accepting help is not a sign of weakness. This disease is difficult to manage on any day. When you add children in to the mix it takes on a different level of difficulty, young children especially. If you take on the role of your pALS caregiver it can be really hard to make the decision of who needs you more, your children or your person.
If you have the grace to admit that you are falling short, you don’t have to make the choice, everyone can come first. There will still be days where you find yourself lacking at both the role of parent and caregiver. There will also be days where you find you are a super hero and you did it all on your own. On the in between days you will find you have a group that loves your family and cares about you. That there are people willing to step in to the gap that this disease inevitably creates in a family. Accept those people, love those people, appreciate those people and they can make it so that there is no having to choose.

Holland Squad (my boys’ other mothers)

I Get Hate Mail?

To some this might come as a shock but I actually get quite a few hateful messages from people who are upset that I was able to get access to Nurown while others were not.

In pre-op

Here is why I don’t let it bother me and you shouldn’t either. It’s not based in rational thought and comes from a place of either suffering or ignorance. Either way, these people are in need of compassion. So why are they upset? Did they ever direct anger towards the few people who have accessed experimental treatments through the Expanded Access Program? Or against people of means who have been able to travel and access treatments in foreign countries? Of course not. In the dialogue I have had with angry people I have been able to identify a few common themes. I will share them here so it makes more sense. 

Anti Semitism

I know this is hard to believe in 2020, but the majority of angry messages I get involve some language that reveals resentment for Brainstorm simply for being an Israeli company. Sadly it is not only an issue of education. I have heard it as much from college professors as I have from uneducated social media trolls. Often they don’t even realize their own biases, and they fly into a rage when you ask them not to use hurtful and discriminatory language. This is a problem that is beyond our ability to resolve, but I think we all have an obligation to stand up against it. 

Politics

It’s no secret that there was significant opposition to the Right to Try law and there are people who were disappointed that they were not able to block passage of the law. To the credit of some of the strongest voices of opposition, many of them put the arguments behind them and have actually reached out to collaborate on ways to make the law practicable. I have tremendous respect and gratitude for these people. Unfortunately there are always spiteful people. People whose identities are so interwoven with their opinions that they view being proven wrong as an existential threat. In their fear, they lash out at anyone or anything that might put them in a position of cognitive dissonance. What can be done for these unfortunate souls who live in constant fear of diversity of thought? Love them anyway. Anger has never been a cure for fear. Keep participating in open dialogue and hope that one day we’ll all realize that we want the same thing. 

Envy

At some point every single patient or caregiver struggles with this. Early on in my disease, when I realized that I was already symptomatic too long for FDA trial participation, it seemed so unfair. I might have looked at another patient who was not diagnosed until after they watched their kids grow into adults and think, “why couldn’t that have been me?” I’m sure anyone who also wanted to access Nurown thinks it is unfair that they have to wait for now. The hardest part is, they are right. There are treatments out there that are going to be effective for people that they won’t be able to access because our system is not nimble and well financed enough to make it possible. The even harder part is that we don’t have a consensus on how to get there. It is devastating. Of course most people don’t use me as their target of resentment, but for the ones who do, I understand. I am sorry. I hope that one day we won’t have to look at each other and wonder why everyone seems to have different treatment options. We will all have the right therapy for our unique conditions. 

I want to end this on a positive note. I’m grateful that Brainstorm is doing the right thing and working with the FDA to make Nurown available for everyone. I believe their top line data will be available this year and I believe it will be overwhelmingly positive. I don’t have any information that you don’t, but based on my experience and other accounts from trial participants, this is something special. I am also really optimistic about the direction patient led organizations like IAMALS, Team Gleason, and Augie’s Quest are driving research. Precision Medicine Programs, Platform trials, and outside trial access are all about respecting you as an individual, and they are going to lead us to a better tomorrow.

It’s Going to Be OK

“She is clothed with strength and dignity, and she laughs without fear of the future.”

Proverbs 35:21

April 8, 2014…it was just a day. It was a day that had been coming for nearly 18 months. It was a day we could finally breath again. It was the day Matt was officially diagnosed with ALS. I say we could breath again because we had been holding our breath for 18 months. Hiding the inevitable from everyone except a select few and holding on to an ever slimming hope it would not be ALS. Once we got that official diagnosis it was a relief.
Two things to start off with in this first “post” from me, the wife, the caregiver, the mom. The first is, believe that I cried, yelled, denied, then cried again. A lot. About 18 months prior when the first neurologist told us it could be ALS I crawled into Matt’s lap while our 6 month old was napping and I cried. Then I called my best friend and cried some more. I got to the point where I almost couldn’t breathe. Don’t Google ALS when you get the preliminary diagnosis. Google doesn’t know anything about ALS. The second, and this is a piece of wisdom from a woman I greatly admire – Mrs. Lynne Nieto – both of you were diagnosed with ALS. It’s not just your spouse. It’s you too. Your life is about to go all kinds of haywire. There is no way to prepare for the cruelty that is ALS. But, guess what? If you make the decision to stay, you can absolutely crush this disease. By that I mean, you can live it on your own terms. Still laugh. Still love. Still have a pretty freaking great life.


Unfortunately, your spouse doesn’t have the option to “opt out” of ALS. Some spouses don’t think they can stay, for whatever their personal reasons, and they leave. For me, I didn’t have that option. If you have ever met my husband, you know he is charming, handsome, intelligent, and charismatic. He draws people to him. I was no different those 18 years ago. And I’m still not. I have loved him beyond measure for over half my life, and that love has only increased while we grew our family. When we met at the end of an aisle in 2007 we thought we were headed to a life of Naval Aviation not a life of advocacy for the terminally ill. But, this is where we find ourselves, side-by-side most of the time. Sometimes he is the one dragging me along, most of the time it’s my stubborn personality forcing us to do things that are probably beyond him. Fortunately he loves me enough to let me force things.
Since we were told it most likely was ALS, in Fall 2012, we have moved halfway across the country, had 2 more children, completely renovated our home to make it accessible, flown our family to San Diego to take our kids to DisneyLand, talked to countless members of Congress on countless trips to DC, met the President, advocated and passed The Right To Try Act, and taken our 3 kids, au pair, and 4 grandparents to the Grand Canyon. In between all the big events, we taught our kids to walk, ride their 2-wheelers, been to family weddings and funerals, made new friends and said goodbye to others, gone to the beach, had a newborn in the NICU for 18 days and lived a normal suburban reality – just with a guy in a wheelchair. Pretty. Freaking. Great. Life.

Our crazy crew at Hermit’s Rest at the Grand Canyon


Fortunately, I made the decision early on to let my stubborn side reign. Although ALS is a large part of our life, it is not OUR LIFE. I had a very clear picture of my life from an early age. I was that girl that dreamed of the white picket fence, 2.5 kids, family dog and a ruggedly handsome husband. I am living a different version of my dream. I have a natural wood picket fence, 3 kids, crazy dog and a ruggedly handsome husband with ALS. Some days this dream can feel more like a nightmare. I don’t want to paint a rose-colored-glasses view for anyone. There are days when I fall exhausted in to bed, not quite sure of the last time I showered or brushed my teeth, with the sink full of dirty dishes, piles of dirty laundry (maybe a wet load in the washer?), next to a husband I know will wake me up at least 4 times to rearrange him throughout the night with tears behind my eyes and a lump in my throat. On those days I have those thoughts – “I can’t do this anymore.” “I am so tired of this crap.” “I just want to walk away.” “I don’t want to be angry anymore.” And on those nights, before I go to sleep, I try really hard to tell myself – and believe – that tomorrow will be better. I can tell you that there has never been a morning where I woke up that it was not better. There has yet to be a morning in all those 2,113 days that I woke up and have thought “It’s not going to be OK.” That is what I want to leave to anyone reading this. Everyone has their own struggles which are just as real as anything anyone else is going through. Don’t diminish your own struggles. Know, either as you go to bed after an awful day or wake up to a new hardship, it’s going to be OK. You got this. If you don’t believe you do, there is someone in your life who does believe in you. And if you still don’t believe you do, listen to this bit of motivation Matt and I both turn to on those exhausting days:

Keep Showing Up • Team Fearless