Grief and Riding the Emotional Roller Coaster

I am going to get real in this post. So much has happened mentally since my diagnosis on August 30, 2023—the “invisible” part of this disease. I am a master of pretending not to feel what I feel—I have been one who takes care of others my entire adult life and I am used to putting on a happy face, but ALS has given me permission to shift that. That being said, I do still try to put on that happy face with most people I encounter because even though someone asks how I’m doing, they usually don’t want all the sordid details. So, I smile and say things are “pretty good” or “okay.” I will go into more detail when specifically asked.

Grief is something that is front and center in my existence. So much grief. I feel grief when I see couples walking down the street carefree and hand in hand. I know that I will never be able to do that again. I feel grief that I can never take my corgi Crosby for a walk. I feel grief that I am not totally safe being alone since I never know when my mermaid leg will go jellyfish on me and land me on the floor. I feel grief when I try to carry things and can’t—having things in my hands messes with my balance. I feel grief in simple things like getting dressed. It gets harder all the time.

Enough on grief. That was just a scratch on the surface of what I feel every day. I’m sure I could fill pages with things that suck.

The emotional roller coaster that I ride on every day has many hills and valleys. I try to stay positive and find the good, but sometimes that doesn’t work, and at times I don’t want to be positive. Sometimes it feels impossible.

I feel sad every day at least once and shed a few—or many—tears. I usually cry privately because people want to “make it better” and there is no way to do that. I feel sad that so much of me is slipping away.

It took me a few months into my diagnosis before I actually got angry. I don’t share my anger with everyone—there isn’t anything that anyone can do, and anger is not an emotion I choose to share. I feel anger toward my body that it is not working like it should be. I feel anger about not being able to do things that I want to do with family and friends because physically I’m too slow or simply can’t. I feel anger that this disease is proving to be so expensive. So far anger seems to come because of a failure to be able to accomplish something, falling, and such.

I’m sure you can imagine that fear is a constant in my life. I’m afraid of the progression of this disease—of wondering when and where it’s going to choose to go next and I lose control of another body part. I am really scared of losing control of my hands. To be honest, I fear each of the losses that are sure to come. I’m scared of the day when I lose part of myself when I lose freedom and can no longer drive myself. Fear is a constant, even though I do my best to ignore it. Knowing that I may encounter stairs in new places sends me into a state of anxiety because stairs are my nemesis. I’m living with so much fear. Helpless and hopeless are two feelings I am trying hard to avoid.

All the above-mentioned feelings are part of my reality, but so is gratitude and joy. I feel joy each day as I see the blue sky and feel the sunshine on my skin, feel Crosby’s soft fur, hear my children’s voices. Joy is what I feel as I notice glimmers as I go about my daily living. I know I am lucky to have people that love me that will help—AND I just have to ask for help.

So, what do I do with all these feelings? I cry, I binge watch TV, lose myself in work, read, talk to family and friends. The circle of caring women in my life that I shared earlier in my posts is shrinking as my ability to pay for their services has changed. I do feel hopeful because I have established care at the Mayo Clinic in Scottsdale. I am impressed by their caring and professional way of dealing with me as a human being. Later this month I will attend my first ALS Clinic. I am curious about what that entails and am hopeful to have more concrete insight into this disease. A seven-hour drive to Scottsdale for clinic is a lot, but even with gas prices it is less expensive than flying. I am hopeful that it’s worth it and I feel connected. I am a bundle of feelings and ask for grace if I am less than positive and am so grateful for family and friends that care about and for me as this roller coaster speeds ahead.