In a world with no shortage of opinions I am not going to burden you with another one. I have been getting a lot of questions about Brainstorm and Nurown this week. I don’t know anymore than you do. I can tell you that the company treated me with as many injections as they could manufacture with a single bone marrow aspiration. When that ran out, so did my treatments. I have received only one treatment in the past 15 months. The Philadelphia VA treated me exactly in accordance with the clinical trial protocols.
Here is the data from my VA medical records. I signed an agreement with the VA and Brainstorm giving them permission to disclose my information.
ALSFRS r: Leading slope from diagnosis to first Nurown treatment averaged a loss of 0.45 ppm. 11/19/18 – 21 12/27/18 – 21 1/25/19 – 23 3/15/19 – 26 5/17/19 – 27 8/23/19 – 27 11/1/19 – 27 12/20/19 – 26 3/27/20 – 25 7/31/20 – 24 10/2/20 – 24
PFT: Unfortunately I have not seen Pulmonary since this whole Covid thing started. I have been doing Virtual clinic so the last data point is the end of 2019. I have still not gone back on the Trilogy despite being hospitalized with pneumonia for 8 days in February 2020. 12/19/2019 PFT: FEV1 2.51 (58% pred), FVC 3.21 (60% predicted), FEV/FVC 78% 11/1/2019 PFT: FEV1 2.80 (65% pred), FVC 3.69 (68% predicted), FEV1/FVC 76% 8/23/2019 PFT: FEV1 2.71 (XX% pred), FVC 3.46 (XX% predicted), FEV1/FVC XX% 7/18/2019 PFT: FEV1 2.45 (56% pred), FVC 2.89 (53% predicted), FEV1/FVC 85% 5/17/2019 PFT: FEV1 2.54 (58% pred), FVC 3.84 (71% predicted), FEV1/FVC 66% 3/8/2019 PFT: FEV1 2.79 (XX% pred), FVC 3.85 (XX% predicted), FEV1/FVC 72.5% 2/12/2019 PFT: FEV1 2.55 (59% pred), FVC 3.11 (57% predicted), FEV1/FVC 82% 1/25/2019 PFTs: FEV1 3.12 (72% pred), FVC 3.81 (70% predicted), FEV1/FVC 82% 12/27/2018 PFTs: FEV1 1.83 (42% pred), FVC 2.61 (48% pred), FEV1/FVC 70%
Elliptical Results: Unfortunately, also pre Covid because the Governor of Pennsylvania shut down the facility where I was using the equipment. I have been riding at home with similar results but it is not standardized. 11/14/2018 Time 40:00 Distance 1.81 miles 4/3/2019 Time 40:00 Distance 3.05 miles 3/16/2019 Time 40:00 Distance 3.11 miles 5/30/2019 Time 40:00 Distance 4.41 miles 7/8/2019 Time 60:00 Distance 5.41 miles 7/24/2019 Time 60:00 Distance 5.63 miles 8/7/2019 Time 60:00 Distance 5.84 miles 9/9/2019 Time 60:00 Distance 6.04 miles 12/2/2019 Time 60:00 Distance 6.11 miles
“Immortality is to live your life doing good things, and leaving your mark behind.”
I need some help. I’m at a loss. I have an idea and no knowledge of how to make it a reality.
For those of you who do not know Matt or me that well, we love plants. Matt is partial to trees, I like the pretty plants. The previous owners of our home had cleared out almost all the trees and plants from the property. They were old, didn’t want to do the maintenance. Over the 7 years we have owned this home we have put in thousands of dollars of plants. Because we are “cheap” we also put in countless of hours of sweat equity and an almost trip to the ER with planting everything. (A 135lb girl is no match for a power auger and the shale layer in our backyard. Definitely a 2-person job.) It is not really a joke when Matt says he wants his ashes spread among “his trees” in our backyard when his number is called.
I get so much joy out of planning our annual spring planting and our vegetable garden that I am seriously looking in to going back to school to get some sort of degree or certificate in landscape design or horticulture. As the boys are getting older and need me less, I am trying to find something to bring fulfillment to my life outside of caring for my boys.
So now comes my idea. I would absolutely love to plan gardens for pALS and/or cALS and install them. Come to their house and give their property some needed outdoor maintenance. Install community gardens in places that could use a little love. What I am going for is taking something Matt loves – trees – and using it to create something I love – gardens – to bring happiness to other people. Matt and I both love the idea of creating something that will be around long after we are gone. You could say the idea was somewhat inspired by our trip to the Big Tree forests in California in October. Those behemoths have been around for centuries.
However, I have absolutely no idea if it is something worthwhile. And if it is, how to start. Would I have to start a non-profit? How do I find people and places that would benefit and want this? Is it a stupid idea or played out already? This mommy and caregiver has been feeling recently like I want to do something more with my life than just take care of other people. I want to do something that takes care of me. That lights a fire under me. That helps me feel worthwhile and is something for me. Anyone with any insight or opinions is welcome to share. Please!
Nature works for its own interest and looks to the profit it can reap from another. Grace does not consider what is useful and advantageous to herself.
There is a school of thought that every human impulse is the result of nature and evolution and that while we think we have free will, we are just acting out biological responses of self preservation or, at best, the preservation of the species. I think this is absurd and if you consider our shared experience I think you will too. I submit as irrefutable evidence, why would anybody befriend someone with ALS? If self preservation was at the heart of your intentions you would look to make friends with people who were physically strong to ensure security or at least have a backup to shovel your driveway in a snow storm. This could be overlooked if the friend could provide material or monetary benefits. Obviously the majority of people with ALS struggle to finance their own care and are unable to be a source of wealth for anybody else. On the question of perpetuation of the species, natural selection would dictate that we would be inclined to associate with people who have a genetic advantage in survival over the environment. I am sorry to say that nothing about ALS makes living easy. In fact, our daily existence makes pretty much everything more difficult for everyone around us. I think the simple fact that people willingly befriend people with ALS is evidence of the divinity of their character. In fact, I think it is the most obvious example of goodness that cannot be explained by the laws of nature that I have ever seen. Thank you. I love you.
“Life is a balance between what we can control and what we cannot. I am learning to live between effort and surrender.”
Hello people! So the year of the 2020 blog obviously did not happen for Matt and me. Started off decent and quickly fell off. We were busy but I can’t point to exactly why we didn’t keep up with the blog other than we both got “lazy”. I wanted to start off again talking to my fellow caregiver spouses. I recently had a long phone conversation with a newly diagnosed wife of a pALS. They are still in the phases of hoping it could be something else…anything else. But also being smart and trying to prepare for a future with ALS. It brought be right back to the beginning of Matt’s and my journey. The thinking I had a handle on the diagnosis and then crying out of fear, frustration and sadness in the middle of a mundane task. Of hoping for it to be ANYTHING else. Heck, almost 10 years later from his preliminary diagnosis and I still cry about it, for all the same reasons. Recently Matt and I had a talk. I do not know about other caregivers but I have a hard time telling Matt about the things I struggle with about him having ALS because I know he feels them too. I don’t want to add to his burden. I miss having a husband be just a husband. And everything that comes along with having a husband. Mostly I wish we had held hands more often, kissed more. I wish we had been more affectionate. Because all that is pretty much gone now. And while the physical perks of having a husband are greatly diminished, Matt is still here. I think the disease has changed his personality some – how could it not? – but he is still that impossibly witty cadet on dorm restriction from 2002. He is still the smartest person I have ever met, annoyingly so. And stubborn, and sarcastic, and funny, and possesses the most random knowledge of trivia. I know my fellow spouses feel the same, unless you are a way better person than me, which is likely, and don’t think about all that has been lost. If you can only look forward, please let me know how you do it! It’s a weird state of mourning the person who is gone and being grateful for the person you still have.
But, I digress from what I really wanted to write. I wanted to write to other caregiver spouses about friendships. About some friendships I personally find very important. I don’t remember if I ever wrote about our friends we have made since moving to Pennsylvania. When we moved here we already knew Matt had ALS. Matt was still a physically normal 30-year-old. Sometimes it takes a while to make new friends when you move to a new place. After about 6 months we started making friends. We are still friends with some of those people, but a lot of them have fallen off as the boys grew and their interests took over our lives. Our close group of friends – our squad – have never known Matt as a physically normal person. A lot of them also realize he is not really a normal guy anyways, so it fits. I would say some of our closest friendships have really formed over the last 5 years. These friendships are especially important to me for the mere reason that they do not know Matt as anything other than who he is now. Sometimes, it’s hard to be around the friends we had before the diagnosis, the wheelchair, the paralysis. They feel bad for us. They make me think of a different future. They remember the guy I mourn. I feel, rightly or wrongly, a lot of our “old friends” have a hard time being around Matt so they tend to stay away because catching up is difficult for them too. So having our group of friends here that don’t know any different is awesome for me. They don’t think it’s weird if I show up without Matt. Or if I take him home and then come back to hang out without him. They don’t ask if he is OK at home alone. They know he is. They know our life like this. If we cancel at the last minute there are no questions.
I have never been a part of any caregiver support groups. It’s not my thing. I don’t think I have the personality for it. I don’t immerse myself in ALS. Going back to the phone conversation, I realized and said “I am the worst ALS wife”. I know Matt’s ALS, but past that, I don’t know that much. Matt is the one who dives in to the world. Part of the reason I don’t is because I don’t have the time. Between the 3 boys, the old dog, taking care of the house, taking care of Matt and taking care of myself, I don’t have a lot of free time. The other part is that in the free time I do have I don’t want to spend it in that hole. I don’t let every aspect of my life be about ALS and I feel like if I participate in a support group I would be more in the ALS life than is healthy for me. I would probably benefit from some support of spouses in the same position but I just can’t bring myself to do it. I’m very good at procrastination and avoidance. Fellow spouses, I urge you to make friendships outside the community. And maybe, make them the most prevalent ones. Keep your old friendships from before, but also understand if they fall off, it’s not your fault. You have so much on your plate that the people who really love you will keep showing up even if you are a distracted friend. They don’t care if your spouse is not the same person as they were a year ago, they don’t care if you forget to call them back, they are the people that are there for your forever. Don’t ever let those friendships go. But, if there are people in your life you thought were beyond important and they stop showing up, let them go. Don’t expend energy on people who don’t get you and your life. Work to forge friendships with people outside the ALS world who come in to your world. It’s refreshing to take a 4 hour break for a Saturday night. To be with people who don’t ask about your spouse or talk about ALS but still get it and love your family. It’s there but it’s not the focus. ALS did not bring these people in to your life, your common interests or common children of the same age did. It’s an added bonus these people are fantastic. Friends of caregivers, you will never know how important your friendship is to us. I for one am not a girl who expresses feelings very often in person. Our squad knows who they are and this is my way of telling you that you are so very important to my survival on this path. I am forever grateful our children ended up on the same baseball team, in the same grade, at the same elementary school. That you dance in kitchens with me, run stairs with me, take our kids for an afternoon no questions, check up on us the morning after, make me laugh and smile on days it seems like I can’t. You are so loved.
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.
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…
God bless America, land that I love Stand beside her and guide her Through the night with the light from above.
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.
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.
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”.
I live in that solitude which is painful in youth, but delicious in the years of maturity.
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.
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.
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.
If you’ve ever fallen down and lost your spark, get back up as the whole damn fire.
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.
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.
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.
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.
You never know how strong you are until being strong is the only choice you have.
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.
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.
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.
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.
” For the ones who had a notion, a notion deep inside That it ain’t no sin to be glad you’re alive”
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.
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.