~ALS Fact of the Day~
Hello, Hi
Its me.
It’s been a while. I am sorry for that. Its has been some time since I have felt like writing. It may have been partly because I didn’t feel my voice mattered. Life gets in the way, and the days can pile up on a person, and before you know it, you realize that you need to get the feelings and thoughts into a reasonable and logical order. For me, that means writing it all down in some sort of stream of consciousness. Barely edited but just feeling the words sort of flow through me.
If you are new to this world, let me take a moment to introduce myself.
My name is Theresa and while I am a kaleidoscope of experiences and emotions and energy all rolled into one, the one thing I am the most proud to call myself is “mom.” I have three of the most perfect children a mother could ask for and now, I am a grandmother to the most beautiful baby boy. I have lived a crazy roller coaster of a life that has pulled me in so many different directions and paths. Death rocked my world at an early age, followed by insecurity, neglect, sexual abuse, and bad decisions. I have loved and been loved. I have hurt and been hurt.
But nothing has rocked my world like what happened in 2015. After barely learning what ALS was, and then SLAM, it had suddenly been dropped right in front of me. I suppose in hindsight, I could have left. It was scary, and I knew it would be hard. I really had not idea how hard, but I knew it would be. I also had no idea how long it would be like that, or that it would progressively get harder with each day. But there was something in that moment that compelled me to stay and fight. Something said, “Don’t run away from this.”
My husband was diagnosed with ALS in 2015. It turned our world upside down. Literally, everything that I thought I knew, was suddenly no longer true. Or if it was true, it wasn’t the truth I imagined it to be. It was hidden right in plain sight.
Even throughout all the years, in all my experiences, both beautiful and ugly, of all the ups and downs, of which there are many, and yes the wins, but many more losses, and scary situations…. in all those years, I thought the world turned one way, and in what felt like overnight, my world was suddenly spinning a different direction.
It can be extremely scary when this happens.. It is hard to focus and it is filled with so many “what-if’s” and “how is this happening to me?”
You might try googling at first. Searching the web for key words, and finding millions of different scenarios and view points. Can I just give a piece of advice…Don’t do that! That is usually the worst thing you can do! I highly recommend looking for published papers, and reputable websites to share facts with. If you look around you, many people will be oblivious. After all, this hasn’t affected them yet. And maybe they won’t ever be affected by it. Let’s hope for their sake they aren’t. But this is no longer your narrative or story. You are affected by it. Don’t listen to the people on the sidelines. Look to the people who have been on this journey longer than you, and have wisdom and advice to share. I promise you will be inspired, you will feel less alone and you might just find you are stronger than you realize.
Next is to learn as much as you can. It is going to be daunting. You are going to have so many questions, and fears. Some of those fears may be unfounded. Education is the best tool to help your anxiety and your stress as you navigate this new normal. I cannot stress this part enough…look to professionals. The ones who have dedicated their lives to this. They are the ones who can help us stay level-headed. That may mean not looking to social media influencers, or unreputable sources for what you want to believe or see. Look to those who have been in the arena to help you navigate this. Bringing in outside groups or people who cause fear, or even those who may be well-intentioned but often come with promises of false narratives such as cures, or solutions. Avoid them. Don’t even be tempted to look. It will only cause more of that cortisol spike. This journey is a marathon. Protect your flight or fight responses. Breathe. Unplug, and try to regulate your regulatory system. You cannot stay in that space and it serves no one.
Breathe
While you are breathing and remaining calm, I need to stress this, especially if you are new to this.
Some people say I overreact..or that I am being dramatic. I have been told this on more than one occasion. But the truth is, when I feel overwhelmed and out of control, I need to have check items, or to-do’s to help me feel like I am still in some sort of control, even if it is only my small space.
The one area that helped me most when I began planning for all the things I would need, before I needed them. I learned how to do things, before I needed to. Sounds silly, but when Matthew fell for the first time, I didn’t want to call the fire department for a lift assist. I had been trained on how to use a hoyer lift, and suddenly, I knew what to do when he fell. That lessened my anxiety in the moment, and helped relieve my fears for future situations.
When he choked for the first time, I knew exactly what to do, and what equipment to use. Was the situation scary. Yes! Incredibly so. But having knowledge and the equipment ready, and understanding how to use it, kept us both from panicking. Knowing that everyone around us also knows how to use the equipment also lessens my anxiety and stress as this disease has progressed.
I also recommend getting your house in order to prepare for things you would think couldn’t possibly happen. What does that mean? What kinds of situations? Remember how, during a fire drill in school, you knew where to meet at, but during a tornado or earthquake (or nuclear bomb for those older folks) you had to learn to hide under a strong wall or doorway? We don’t think it will ever happen, but if it did, its nice to know there are a few routes a person can take. Think about a few of these possibilities of things that might happen that are out of your control. Find ways to mitigate it.
But..Don’t just think about the possibility, do things that help you feel a bit more in control. In the ALS world, many people fear the electricity going out. They worry about losing communication with loved ones, and situations that can arise without notice or planning. So plan for some extremes. How to leave the house quickly and safely. Where would you go in case of an emergency? If there are unexpected situations, say…like extreme weather, can you safely eat or drink, or have energy? Do you have a list of people’s phone numbers and contact information listed, in writing, somewhere safe?
That is not meant to alarm you. It is meant to help you relieve those moments when anxiety gets the best of you. Having plans for situations are an excellent tool to help relieve our anxiety as we plan.
I have been in the ALS world for over a decade now. I have seen many, many, families handle crisis by not facing it directly. Some families avoid talking about it, or even acknowledging it. They let each day go by, and pretend that it is a mistake, or not true. Even when they are choking, gasping for air, or weakening, they will disregard the signs and symptoms. These types of situations are truly difficult because it is a natural reflex to not want to face something like this. I completely understand.
Don’t let the anxiety and fear paralyze you. And it may. In the beginning, when your world is turned upside down, and you can’t find your footing, find physical things you can actively do to help your mind process these emotions.
When your world is turned upside down, you will be shocked to learn that people you thought were in your circle of trust, the ones you relied on, counted on or loved with every fiber of your being, they are no longer in that circle. Maybe you had to remove them, or maybe they removed themselves. Either way, you must let them go. This will be one of the most difficult parts to process in all of this.
I have seen first-hand, how some families break apart. This disease is hard to look at. It is hard to sit with. It is gut-wrenching to see how families blame one another or turn their backs each other. It is incredibly difficult to learn that the friends and family you had, are not the ones who will have your back when the going doesn’t just get rough, but completely falls to shit.
Now let me give you some hope.
You are not alone in this.
You’re not.
There are so many people who want to help support you, carry you, let you lean on them, and yes, even help you when you don’t think you can take one more minute of this life, this situation.
Find the ones who speak to your heart.
Is that in smaller communities, of people who are facing the same situation?
Online support groups are great, but real connection comes from baking and breaking bread together. There are more people than you might realize. Don’t just isolate yourself because you don’t know how to ask for help. Go to the places where people are helpers. They help you by calming your fears, and helping you feel prepared.
When Matthew was first diagnosed, I couldn’t handle the constant barrage of feeling so incredibly helpless. That is when my anxiety was at its highest. And that has been true since day one. I need to feel like I am participating, not just helplessly on the sidelines.
I decided to jump right in. In hindsight, that is what I needed to do to help me feel more powerful in all of this. I didn’t know what I was doing, but I put one foot in front of the other. And that is what will be asked of you.
In the beginning, I started with writing down my feelings and sharing it. But I realized that wasn’t going to be enough. So then I started working with other like-minded groups who began forming small committees that helped others who also felt overwhelmed by this new normal, a reason to come together and focus on what we could do.
We began by raising money to build ramps for people who didn’t have the resources to fund thousands of dollars of unexpected costs that were occurring. We found mutual areas of interest. In our case, it was with housing and technology and support.
But we didn’t stop there.
We began branching out to other ALS organizations. Some we found were incredibly supportive and caring. We began collaborating. That increased our impact and increased awareness of who was not getting what they needed through this new reality.
Others were surprisingly not receptive in working together. They came up with excuses as to why. Here are some of the exact words I was told, by organizations that are far bigger and far more powerful than us.
“We would love to support you but it isn’t in our funding model…
That just doesn’t align with our goals and mission.
And my personal favorite…”you should just stop and join us and what we are doing. It would really be better for everyone.
One particular person comes to mind when they proceeded to tell me that “we would be “competitors” for the same dollar.” That doesn’t work in my mind. We are not competitors if we all want the same goal. Isn’t the goal to make the lives of those less fortunate, diseased, or the weak and vulnerable better? Guess what.? We moved on. No sense in wasting time and energy with people who are going a different direction than you.
Scarcity is a tactic that is often used. But there are so many others who understand that we are stronger together. I encourage you to look for those who are helping.
It is also understandable that while you are in this situation, it will be hard to look around you. You will find all sorts of ways to distract yourself from this new world. Adapting is one of the biggest challenges. You will want to numb yourself. I did, I have, and I sometimes still do. If I am honest, I have been distracting myself more and more often lately, because I see the progression, and the loss and the grief is overpowering at times.
In the beginning of my ALS journey, I would numb myself. I distracted by using social media and alcohol and work, and school, taking on far more than was necessary, avoiding hard conversations, and everything in between that I could do, to not face that this was in fact, my new reality.
I burned out. BIG Time.
If you are still reading, maybe I can share some wisdom with you?
I have learned so many things on this journey that I hope you will find resonates with your own story.
Find your strength by giving strength.
Don’t fall into despair.
Don’t fall into thinking there is no hope. I have witnessed people given a terminal illness show more strength and spirit than those who have never experienced anything beyond their privilege. Privilege comes in all shapes and sizes and abilities. Don’t let anyone tell you differently. But strength of spirit comes from taking what you are faced with, and looking it in the eyes and saying, “No matter what I am faced with, I will meet it with courage and determination, to lessen the damage to those who walk behind me.”
That is where I find my strength. I never want anyone facing this disease to feel the way I felt when he was first diagnosed. I couldn’t solve ALS. It was a problem far outside of my scope or experience. But I could try to fix one area. For me…it was keeping families together, and supporting them through the entire journey. That looks so different for everyone, but for me specifically, I believe it is accessible housing, accessible communities, and technology that improves quality of life, not hinders it.
Maybe you resonate more with helping people with meal chains, or pet care. Some people can’t leave their homes because it may not be accessible. Others may not be able to travel because its no longer accessible to them or they do not have the tools or equipment necessary to move freely. Would you feel like you were contributing if you helped run errands, or pick up supplies and deliver them?
If that feels too heavy, that is perfectly understandable. Do what you can, when you can. Even something that seems irrelevant can make a huge impact when enough people come together. Can you donate to the organizations that have more bandwidth than you do? Even $5 can go a long way for people trying to help in all the areas that seem too daunting.
Did you know I have personally witnessed an entire community of people come together and build a home for people with ALS, in less than 5 months time?
Its true!
Literally hundreds of people came together, and they worked towards one goal, but each bringing their skill set, to help offset the burden.
That is really the most incredible part of the story really.
The story of how hundreds of people from all walks of life, came together . We witnessed community in action. Each person and business had different specialties and skills. Some with building, and painting, others with electrical work, plumbing. There were others who donated supplies and helped tell the story to others who didn’t know about ALS and our story.
And in no time at all, there was a house built, that became a home. It wasn’t perfect. There were mistakes made. But the impact still matters. The work was lifted by many, not a few. It was inspiring to witness.
We learned from that and continue to make strides.
I see that impact every day. If you are new to this world, don’t forget to stay inspired. There are leaders who are leading with love, and calm supportive solutions. This is heavy and difficult. And it only gets harder. Not for everyone, but for many. Protect your energy. Protect your mental health.
In all the years I have been on this roller coaster, I have tried to shield people from the harshness and reality, while simultaneously trying to smile and pretend this is all gonna be okay while simultaneously trying to speak my truth by working to share the stories of others on this similar path, because once you see how ugly it is and for so many, how can you turn away? Where do you put all this ugly besides to share it with others so they can see it and hopefully come take a small portion of this very heavy weight we are all carrying now.
This too shall pass, in one way or another, all will be okay. But while you are on this roller coaster, you will feel a range of emotions you had no idea could be possible. Every possible spectrum of emotion will assault you, sometimes all in one day.
Matthew is bedbound now. He is in pain. I cannot imagine how he manages to continue each day, never complaining. He is protecting me. I know it, he knows it. He is always trying to protect me.
He remains calm. He remains grateful for each day.
I am in awe of his strength. It is hard not to be. But as he is trying to protect me, I am trying to protect my children. But we are at the ugly parts now, where neither of us can protect the other from the difficulties of this reality and what is in store for us, and we can no longer protect the children from the realities of this journey. They can now see it. Even if they can’t articulate it all, they see it.
I worry about my children. I never wanted them to be affected by this disease and I feel responsible for bringing them into this. They never asked for this. I continue to hope and pray that they look back in their older years and see my actions and my work has having always been to make other peoples lives, especially the most vulnerable, a better and safer place to be. It will be up to them to start working towards those goals. I want them to see it in my actions, not just my words.
So that when it is their time, they can take the torch and move the needle, and hopefully make the world, no matter how big or small that world is, that they help to make it a slightly better place.
Even if it is only with a small act today.
And another small act tomorrow.
I wasn’t a perfect mother, and I am severely flawed. I know this. But my heart says that we should make the world a better place for our children, and the most vulnerable. For me, that is for people who are being marginalized, and then ignored or even blamed for the problem. Having a disability or disease such as ALS is one of the hardest situations that life can hand a family. There are so many obstacles for us to navigate. It is hard to understand or even truly empathize unless you find yourself on this journey. Maybe you can relate to other situations that might be even slightly similar. If you can relate in even a small measure, at the very least, please do not make their lives harder.
”I may not have control of what is happening, but I have control in how I respond.”
These are the words I raised my children with. I want to continue to model this with my actions, not only my words.
If you find yourself on this journey, or share similar struggles, I hope you will join us.
ALS Fact of the Day~ 