I need to let out some feelings I’ve been dealing with. I’m just going to let loose. Any writing order out the window. I’m writing my feelings, my thoughts as they come to me right now. Just go with me, please.
I was very lucky to have my neurologist offer me the opportunity to participate in the Neuralstem stem cell study. Even better, I’ve experienced really positive results from it. One would think, including myself, that I would have nothing but overwhelming joy 24/7. I mean if there is something to feel great about, it’s benefiting from a clinical study for ALS. Something that researchers and patients have hoped and dreamed about for well over a century, to no avail.
I am overwhelmed and grateful for what I’ve been given. It can also be overwhelming in other ways, too. I don’t feel I have the right to complain or have a bad day. When I do, I feel very guilty. I see a person who has ALS with a young child and think I don’t deserve this, they should have this so they can be with their child longer. I’m sure my own adult children don’t agree. There are many adult milestones to come. I do want to be there for them. Go ahead, do the math. I had children at a young age, I’m from the south, I fit into a few stereotypes. You can underestimate my intelligence if you like.
I get angry at myself for not feeling positive every second. Then I tell myself I haven’t been cured, I can’t be and do everything I could before ALS. It’s OK to be upset that I still have this terminal illness. It doesn’t work. I get angry that I’m in a wheelchair for almost any trip out. I want to walk, I want to run. Now here is the real kicker and the one I get most angry at myself for. I feel so damn ugly and fat. I guess I had put more importance on that than I like to think I did. This one really brings on the guilt. Not to mention, I shouldn’t be really focused on that so much even if I didn’t have ALS. I’m 41 not 21, almost 42 and I have a husband who loves me no matter what. Again, I think how dare I have these feelings, when so many would never be focused on looks or any petty thing.
Some people don’t even acknowledge me. I was in line with my husband the other day and a woman said to him, she has very pretty hair. What the hell? I had been talking to him intelligently, handling my bag and other items. So does being in a chair mean to this woman that I’m not worthy of speaking directly to, or does she think wheelchair equals idiot? I never acted like that to a person in a chair.
I don’t like the stares and situations I mentioned. I think back to not long ago when all I wanted was to have the wheelchair-accessible van so getting out would be so much easier. I haven’t had it that long, and I’m already complaining over a couple of incidences that infuriated me when I should just let it go and experience how great it is having more freedom. Believe me, it has been great. So why let little things like that upset me? It brings me back to, I don’t deserve this mode. Then I see other people with ALS who are always so damn positive. But really, are they that positive behind closed doors?
I saw a man on TV this past Sunday with ALS. His dream, after being diagnosed with ALS is to hand out doughnuts to children. He said he was happy that ALS gave him this new perspective on life that he otherwise wouldn’t have. It showed him documenting other people who have found this silver lining from having this disease. They were glad they had it so they could experience this awakening. It was on the television show "Sunday Morning." The man is from, I believe, South Carolina. Get in touch with me if you read this and know him, or if you are him. I’d like to understand this mindset. It seems inconceivable to me knowing that ALS is an extremely horrible way to go.
I have mentioned positive aspects of the way I am progressing. There are advantages to having one whole side much better than the other for several reasons, including the ability to transfer easier, I feel positive about the amazing results I’m experiencing from the study. I have never felt positive about having been diagnosed with ALS, or had any great awakening. In keeping with being honest, I’m asking myself what is wrong with these people? Lying, crazy, in denial? I really want to know.
I’ve written some of my feelings. I don’t feel angry every day. I’m extremely appreciative of many things, and I do have fun any chance I get. I feel happy, lucky and encouraged by the changes I’ve experienced resulting from the study. I still haven’t mentioned it all yet, there is more. I am part of something huge in the future of treating ALS. I will feel great when it’s available to all. I just need to express the other side of my feelings and life with ALS in this post.
I’ve also had a lot of wonderful messages from people with ALS and caregivers; I appreciate this so much. It’s part of the fuel that keeps me going, keeps me fighting. I still do not see the silver lining, feel a great awakening or feel happy that I have ALS. I just don’t. I’m glad these people can feel that way, they are lucky. I can never say I feel lucky seeing the world from a death by ALS perspective. I would not be telling the truth, and I don’t get it.
I’m baring a little of my soul here. Some may find my feelings selfish, feel anger toward me, or maybe feel it made sense in a way. I just needed to let it out, and this is where I do it. As I say on my home page, I’m not here to sugarcoat what I’m dealing with. However, whether I’m happy, sad or mad, I am always 100 percent in the fight for us all.
Thanks for reading about my inner thoughts and some demons I wrestle with.
Until next time, take care.
The blog was posted originally on Feb. 25, 2014.
About the Author
My name is April Moundzouris, and I was diagnosed with ALS on March 28, 2012, when I was 39 years old. I recently started a website, The ALS Express, which contains easy-to-find information for those recently diagnosed with ALS. The site also houses my personal blog (also posted as April's ALS Blog at WordPress). My site is very straightforward regarding my life with ALS and may offend some. However, that's not my intention. If I can help one person newly diagnosed with this horrible disease better understand how to adapt to their ever-changing condition, then I have a feeling of accomplishment. If you get a chance, please visit my site. Please also visit The ALS Express on Facebook, a fan page that my husband set up and maintains.
Lastly, thanks to everyone helping to spread awareness about ALS. A cure or at least a treatment is way past due.