Eric’s ALS Diagnosis

One year ago, our worst fears were solidified when a neurologist at Penn Medicine told Eric "you have all the classic symptoms of Amyotrophic Lateral Sclerosis." When he said the words we knew, because we had been doing our research: terminal illness, progressively paralyzing illness, always fatal, 2-5 years prognosis for the majority of patients. When I heard the words I remember feeling completely nothing; I am not here, this is not our life, I don't know where I am. But upon getting home and seeing my parents who were babysitting and having to say "It's ALS," I collapsed on the floor and cried harder than I had in years. When you or a loved one is diagnosed with a terminal illness, time stands still, and you feel the world continuing to move while you want to stay put. But life goes on, the trash still needs to be taken out, your child still needs to be fed, you still need to interact with people who will say "Hi how are you?" to which you respond "Good! How are you?" When in your mind you're saying hi my entire fucking world and everything I thought my families future would be is collapsing in front of me. I thought we had more blissfully ignorant time thinking I know death comes for everyone, but we have many decades to go. But life does go on, and there is a lot of joy to still be felt, the grand scheme is overwhelming but if you invest all your energy and emotions into "right now" it can really be a beautiful thing.

Living with and through this disease is no easy feat, for Eric or for any of those that love him. There is no cure for this disease, there is no medication approved and available to significantly slow progression for this disease. There is no saving him, and what an awful feeling it is to want to save someone so badly but all you can do is support them as best as you can through this disease. Most days we are lucky and can pretend it isn’t there, though he walks with a cane or takes his wheelchair for longer trips, we have gotten used to these things that help with mobility. But then there are days where there are big falls or where the truth of his fate feels all too real. Thats the thing about ALS, once you get comfortable with whatever modifications you have had to make to your life, things get worse, there is no pausing, no getting better.

ALS robs you of your independence, sometimes slowly, other times really fast. I used to feel safe leaving Eric at home once Logan went to bed, to go meet up with friends and feel normal, or to go get some work done. But after a few very scary falls, those days are leaving us, with ALS, you have to swallow your pride and try and live a little bit safer than you once did, it's not that Eric always falls, its that if he does fall, and if the fall is bad, he cannot catch himself and save himself from the potential damage. Falls are a tricky thing with ALS, I once read a description by a fellow ALS caregiver that perfectly portrays it: “When people with ALS fall they don't lose their balance, their nerves fire sporadically as they are losing them, sometimes they work sometimes they don't. Nerves don't just stop one day and never work. It is more like faulty electricity in your house that flickers, then one day goes out in one room for a moment then works again, while in another room it is just flickering. Until eventually, over time, one at a time, all the rooms are dark and stay dark.”

Due to the nature of this monster, I am terrified to go to work and leave Eric in the care of someone who does not know him and his needs the way that I do. I know one day I will have to trust in others who are trained to care for those with ALS, but for now it is comfortable and more cost effective for me to do what needs to be done. In order to go to a job I would need to find care for Eric and Logan, which would result in us spending more than I would make. So these days we are creative about our income. I am incredibly lucky that so many of you keep commissioning artwork from me. I am so grateful to paint for people and in turn to grow my little business. But again, ALS creeps in, and steals a lot of my physical time and takes up a lot of mental space in my brain, leaving me a little bit slower with finishing each commission.

So many people have been asking what they can do to support us, our gofundme is always open, and in addition to that we are so excited to say we have created some designs for t-shirts, sweatshirts and other fun stuff with the help of Lauren Findlay! I am also in the process of making some paintings that will be available for sale in print form. By purchasing any of these things, you will be supporting us directly and helping us continue to pay our bills. We love and appreciate everyone who supports us along the way.