I’m a little late to the game. May is ALS awareness month. What I'm going to talk about today Is bitterness. It’s not specific to ALS, but this disease could potentially transform someone into a bitter person.
An odd thing happened the other day. My caregiver arrived and was very excited. He had been listening to a sermon given by his Pastor back in South Africa. He asked if I would like to listen to it while he assisted with my cares. This Pastor, Dr. Mensa Otabil, is doing a series called things that destroy us. The first video is about bitterness. Dr. Otabil mentioned in his sermon that bitterness is a poison. It is poisonous to you and to those who you encounter. An excerpt from Great Expectations by Charles Dickens is an example of this. You have a woman who was left at the altar. The rest of her life she was bitter. She hated men so much that her bitter words poisoned others to make them feel the same way.
While I was listening to this, a friend posted on Facebook. In that post she stated, “be better, not bitter”. It's one of those things that make you go hmm. I thought about it. I didn't think I was bitter. I mean, I would have every right to be, considering my diagnosis. Who wouldn’t be? But still I didn't think I was bitter.
After my caregiver left, I had more time to think about it. Suddenly, my brain became flooded with situations where I still feel bitter. One example has to do with the first doctor I saw in 2017 about a year after i started falling a lot. This just isn't normal for a 51-year-old. She ordered a brain MRI. I'm assuming she was looking for brain lesions that would indicate that I had MS. I also thought that was what I was dealing with. The MRI came back clean, and the doctor told me there was nothing neurologically wrong with me. She should have referred me to a neurologist. That was six years ago, and I'm still bitter about it. Because she didn't do her job thoroughly, I missed out on participating in clinical trials. Also, maybe I would have embraced life a little bit stronger. Or maybe I wouldn't have, but I wasn't given the chance to try. I was telling this story to one of my caregivers who suggested that I write a letter. I've often thought about that, but time passed, and I felt it was too late. It wouldn't be an angry letter. It would be more informative and educational. I just don't want this to happen to anyone else. I'm thinking that I could let it go after that.
I feel bitter that my legs are essentially useless, and I cannot hike. I’m bitter that I won’t be able to grow old with my husband. I’m bitter that I was once a very independent woman, now I depend on others for almost everything.
How does one resolve bitterness like this? Who do I write a letter to? I think one answer is to write a letter to ALS.
I’m sorry to tell you this, but I hate you. You have robbed me of some of the important things in my life. Hiking, snowshoeing, camping, bear hugs, cuddling on the couch, and growing old with my husband have been taken away by you. You have made traveling difficult. Sometimes I want to get in the van and drive all over town, stopping when I see a cute place to shop, or share the driving with my husband when we embark upon a road trip. I haven’t been able to drive for over a year. I understand that you will render me paralyzed. Who does that?
That's just a start but you get the idea. I could write a similar letter to God. I wouldn't say I hate you, but I would say that I'm very angry with you. Seriously, for 26 years I spent at least 40 hours a week taking care of other people. I helped them heal and I helped them die a good death. I was a great Hospice nurse for 10 years of my career and you allowed me to get a terminal disease that's one of the cruelest ailments on earth, and to provide no cure.
In my heart I know that this disease is a combination of many factors in my life. I can't blame God.
The best thing that I can do to decrease the bitter feelings is to tell ALS that I'm not going to let him push me around. I need to prove to him that I am going to live my life as fully as possible. I'm lucky that way. Yes, you heard me I said I'm lucky. The average life span of someone with ALS is two to five years. I've known of many who have died within less than a year. I've had the luxury of having a slow progression. Unlike many others, I've had a chance to cross things off my bucket list. I've been able to take a few trips. I've had the privilege of Volunteering my time as an ALS advocate.
In some cases, maybe you deserve to be bitter for a little while. When you're feeling that way ask yourself if you're allowing it to poison others.
Throughout this next week Jot down a few things that you are thankful for every day.
All Lives are Significant.