Another Clinic Visit in the Books

“The anticipated pleasure of success gets us motivated and keeps us motivated. But we need to let our rational plan dictate how we will get there.”

Denise Cummins, Ph.D.

So I had my clinic visit last week. It still has to be virtual because of Covid restrictions. I decided to ride the elliptical on the porch while I did it just to save time and make it a more relaxing experience. About halfway through the virtual exam, a wasp landed on my neck. I could feel it crawling around and it was big enough that I could see it in the little corner video of my screen. My neurologist saw it too, and he was freaking out, but there was nothing we could do about it. So we just went right on with the exam, but I could tell he was very distracted.
After about ten minutes Caitlin came out to check on me and my neurologist saw this as an opportunity. He started yelling to her through the Zoom call to get the wasp. I should explain that when Caitlin sees a problem, she tends to get tunnel vision. She fixates on the task at hand and is relentless until the issue is resolved. This is a great quality to have for most things in life with few rare exceptions. Unfortunately, one of those exceptions might be separating a hornet from a mostly immobile husband.
As soon as Caitlin saw the hornet, she sprung into action with reckless abandon. She took off her shoe and started swatting at the wasp, temporarily forgetting that she was beating me with her shoe in the process. It ended up falling in my lap and with one mighty blow she crushed it simultaneously hitting me in the testicles. My neurologist couldn’t do anything but watch helplessly. It was hilarious.

FDA

“Government’s first duty is to protect the people, not run their lives.”

Ronald Reagan

On to ALS enemy #2 – U.S. Food and Drug Administration. So much could be said about this bureaucratic quagmire. It’s a behemoth of an organization that is so confusing and has an unbelievable amount of red tape. It seems, from the outside, they are protecting us to death. But pALS are already dying so that doesn’t make any sense.
In 2019 we had an in-person meeting with some of the officials that were instrumental in the Nurown trial. Honestly, I had a hard time staying awake. I feel like it started off well. Through some contacts we had in Congress, the acting head of the FDA joined the meeting, but left about 5 minutes in. From there I felt it went downhill. One member of the FDA in particular was incredibly condescending. Another treated the group as if we were his children, not in a condescending way, more in a placating way. Once I was insulted for the group I tuned out. Through these 2 individuals I feel like we can completely sum up the basis of the problem with the FDA in how it approaches ALS and our community.

pALS and cALS meeting with the FDA – September 2019

For starters, they absolutely believe they know better than us when it comes to this disease. I do not feel like they honor or respect our opinions or input. And isn’t that crazy?! We are the ones living this hell. We are the ones with firsthand knowledge of what is going on. And with my husband there – freakish smart guy – there are people in the community who know and understand the science behind the disease as well. In fact, I would venture to say that the ALS community as a whole is very versed and informed on the science behind the disease. So to treat us like we are somehow less than them is rude, to put it nicely. Then we come to the paternal nature. Like we are petulant children throwing a hissy fit over a drug. They try to placate us with words but no action. I don’t know how long they promised the Guidance Document for ALS Trials before they finally published it. It took Matt saying he was going to starve himself for them to publish 12 pages of guidance. I think it was over 5 years it took them to review and publish the document. That’s the equivalent of a parent saying “2 minutes” when we know it is really going to be 10.
The community has asked for more modern trial design. Did you know that the trial requirements for an ALS treatment are the same for an acne treatment? In what world does that make any sense? A terminal illness is treated the same way as a cosmetic inconvenience. If that doesn’t blow your mind you are special. The placebo arm of a trial is somewhat cruel when it comes to a terminal illness. In regards to NurOwn®, the procedure involves taking a bone marrow aspiration then injecting manufactured stem cells into the spinal fluid. It’s not a comfortable procedure. Half the trial participants essentially got sugar water – that’s cruel.

Basic procedure for NurOwn®

Another problem with the FDA is conflict of interest. Panelists have to disclose any conflicts when they are selected to review a drug, but there are loopholes, like in everything. While they might not get incentives up front, a couple years down the road they might get some kickbacks. In the way of speaker fees, donations to their research, etc. The larger pharma companies can afford to incentivize panelists. Unfortunately, small companies are the ones researching ALS. These companies cannot provide the same sort of future bonuses that big pharma can nor do I think they should for ethical reasons. Big pharma can also make it worthwhile for panelists to not let the small guys get a leg up. I would hate to say that corporate pharma is keeping a treatment from market, but I will imply it. Big corporations do not like the little guys succeeding, in any market. A long read but check out this article giving real numbers to this issue: Hidden Conflicts?
Obviously the FDA is broken in how it approaches ALS. It is also not helping many other orphan diseases. The market for a treatment is not as lucrative for these diseases. There are not enough people dying and it is not a communicable disease. The FDA needs to stop protecting us to death. They need to allow innovation so we can save our pALS and find an end to this disease.

ALSA

“People can tell you to keep your mouth shut, but that doesn’t stop you from having your own opinion.”

Anne Frank

PSA: This is my opinion. Caitlin’s opinion. Matt has advised me otherwise, but a lot of times I don’t follow his advice.


My feelings about ALSA. Let me preface this – I am talking about National ALSA. In my experience, local chapters are far more in tune with the community and, ours in particular, are wonderful organizations. Some have been so disgusted with National that they have tried to branch off from the organization, showing they care for the patients and their families exponentially more than National cares. If you missed that jab, let me put it more clearly. I do not believe National ALSA truly cares about the patients it is supposed to represent. I do not think National ALSA wants a cure for ALS. Part of the problem comes from the contradiction of any non-profit formed to help cure a terminal illness. If they are successful in their mission, they have essentially worked themself out of a job. However, on the flip side, imagine how in demand a board would be if they actually worked their butts off and were instrumental in curing a terminal illness! If they did not focus more on making their community comfortable as it died.

Because that’s another problem with ALS. Our pALS die too fast. The memory is short. The ones fighting now might not be around in 2 or 5 or 10 years to keep fighting and making a ruckus. Our loved ones are comfortable as they die, but that is not what our community wants. Our community wants a cure. And we want an organization that has the backbone to go out on a limb and fund the underdogs who are searching for a cure. Because you can bet our organization has the funds, but it most certainly lacks a backbone.

Tax returns for ALSA 2018

Take the above for example on what I mean. In 2017, Total Revenue versus Grants and Similar Amounts Paid was pretty close to even, off by $2.5M. In 2018, the difference between the two came close to $10M while the salaries increased by $500K. I do not have the time or energy to go searching for the 2019 tax returns because ALSA now makes it difficult to find anything relating to how they are spending their money, but I am guessing it doesn’t look too good for them. For the LIFE OF ME, I can not understand why an organization refused to help fund a Phase 3 Trial for an ALS therapy – the first one of that magnitude and excitement. It literally escapes me. If your mission is to find a cure, help fund a promising therapy. Seems like a no-brainer to me.
Recently, if you follow any ALS advocate on Facebook, there was a picture circulating of a very nice lake house. Said lake house was purchased as a second (maybe third?) home by the CEO of ALSA. This purchase raised quite the hub-bub in the community by its price tag. It’s a beautiful home, lake front, a sprawling 4,800+ home perfect for AirBnB. It was purchased for close to $900K, as a vacation home. I don’t know if we can all agree, but I will say it is in poor taste if you represent a community that is fighting a terminal disease that lays waste to families monetary and emotional resources, that many in the community are unable to sustain life because of the cost – to then buy a home with such a price tag as a vacation home. But hey, maybe it’s wheelchair accessible.

Rumor has it the CEO has a security detail because of “credible threats” since posting this beauty on a public social media page.

I believe one of the biggest problems is that the big wigs at ALSA have honestly lost touch with the community. Barb Newhouse, CEO of ALSA prior to this one, met with my husband, myself and other pALS in our Congressman’s office, without any handlers or staff, and we felt like she listened to our voices. I can not imagine that happening in the current climate. When the CEO of a non-profit makes over $350K a year in salary, not including bonuses, yet the organization has nothing meaningful to provide for its efforts, there is a serious disconnect. During one phone conversation we had with their media guy, back when we started in advocacy and Right To Try, I saw red. We were asking ALSA to help us with RTT and they were refusing. This particular person explained to the group that he understood. He had friends he made while working at ALSA who had died from ALS so he understood our position. Absolutely, positively, unequivocally I saw red. There is no way you can understand ALS unless you live it day-in-and-day-out. At the end of the day, this guy got to go home and leave ALS at his friends house. And the leadership board at ALSA gets to leave ALS at the office. They do not wake up in the middle of the night with their spouse who can’t breathe. They do not have to take their family member to the ER with yet another concussion from falling. They do not have to watch their spouses body deteriorate in front of them, daily, with no options to stop it. They get lake houses. They get “work trips” to Australia. They get expense accounts. It should not be an us vs. them thing, but that is what it has turned into. They do not get it. National ALSA should be ashamed and apologetic. They should do better. They should be the ones calling us asking us to help them get legislation through that helps pALS.

Our mission is to discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.

The ALS Association

Instead, ALSA has repeatedly asked for pALS to advocate for the National ALS Registry – something that ALSA gets a no contest grant for each year from the federal government. It asks pALS to advocate for better health care. It asks them to do annual walks that, wait for it……….raises funds for itself! (We don’t even need to go into the fact that their biggest annual fundraiser are walks, for people who can’t walk. Couldn’t think of ANYTHING better?) National ALSA consistently asks pALS for things that benefit the organization but never gives the community what it wants. If ALSA had produced anything meaningful to the ALS landscape that would be one thing. But sadly it has not. It helps our pALS be more comfortable as they die. Gives them equipment to help with their progressively failing bodies. Provides clinics that they go to every 3 months to learn what parts of their bodies are giving out fastest.
Since its founding in 1985 only 2 pharmaceuticals have been approved as treatments in ALS by the FDA. The first is Riluzole, approved in 1995. Admittedly a lot of pALS do not take this because the side effects are not worth the abysmal extra times it gives the patient. The second is Radicava, approved in 2017. Radicava is supposed to slow the progression of physical loss, but it is not fully effective – post approval studies show no meaningful impact – and is an injection so not a lot of patients choose to submit to this treatment either.
So, in 36 years, an organization that has as its opening to their mission statement “to discover treatments and a cure”, has nil to provide the community in that department. An organization that received an ungodly amount of money from a viral fundraising campaign brought about by 2 pALS in the community – not the ALSA fundraising arm – has nothing meaningful to provide to the community. Pete and Pat were so excited about the prospects and hope brought about by the Ice Bucket Challenge. Sadly, these two men have fallen victim to ALS whilst ALSA still has millions in the bank. ALSA has failed us. ALSA continues to fail us.

I want to be like a kid and scream and throw a tantrum. I want our pALS to be heard. I want our pALS to be seen. I want ALSA to understand they are royally f’ing up. I don’t want to listen to my husband on another Zoom call with other pALS trying to figure out a way to save their own lives. There should be no Matthew McConaughey Dallas Buyers’ Club ideas floating around. These people should be with their families enjoying whatever time they have left while ALSA is doing the heavy lifting. These pALS should be the ones enjoying sunsets on the upper deck of a private lake house while ALSA gets the FDA to expedite therapies. It’s outrageous, infuriating, mind-boggling and heartbreaking. We have to find a way to fill the hole that ALSA has created when it abandoned this community. Because that is what it has done. ALSA has abandoned our community to serve itself and it’s time we did something about it.

Brainstorm

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. 


Bone Marrow aspiration:  11/19/18 


Nurown Infusion Dates:
12/27/18
2/12/19
4/18/19
7/18/19
9/18/19
11/21/19
8/12/20



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 

Leaving a Legacy

“Immortality is to live your life doing good things, and leaving your mark behind.”

Brandon Lee

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.

Our backyard when we moved in to our home.
Our backyard now.

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.

One day of harvest from our summer garden.

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.

The boys at Calaveras Big Tree Park in California.

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!

To my friends

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.

Thomas Kempis

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.  

Moving Forward

“Life is a balance between what we can control and what we cannot. I am learning to live between effort and surrender.”

Danielle Orner

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.

Some friends always show up. Some friendships save your life.

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

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

Rudyard Kipling

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

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

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

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

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

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

Bob Dylan – My Back Pages

I love America!

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

Irving Berlin

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

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

The United States Constitution and The Declaration of Independence

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

Matt at NIACT in 2009

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

Solitude

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

Albert Einstein

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

Sometimes we get early morning visitors to our bed.

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

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

I live for night times with my boys.

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

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