Remember that movie with Ryan O’Neal and Ali MacGraw? You know the one with that memorable line, “Love means never having to say you’re sorry.”? Okay, all us old-timers know it’s Love Story. Well, that memorable line has become my life.
My numero uno caregiver and husband Joe has told me numerous times to stop apologizing for things. He understands a lot of things about ALS. He understands about the things I say out of frustration, the things I drop and can’t pick up, and the things I can’t do anymore. I know my own frustration dealing with those things and can only imagine his. I feel the need to say “I’m sorry” when those things happen. He’s sick of hearing it. He tells me there’s no need to say it over and over. He attributes those things to the beast of ALS. It hurts both of us and I wish it would stop.
It’s hard to stop those things you have no control over. Even the funny things that happen between us are hard to stop. We watch TV, him without hearing aids at times and me with my wonky speech all the time. When he doesn’t hear what has been said he asks me. Me? Really? I think wonky speech should eliminate me from repeating someone’s lines. After all, the other night at dinner it took me four attempts to get him to understand one word. Eventually I wrote it down but even that took two attempts before Joe understood me. It seems that my hands weren’t in good shape either that night. But who else is there to ask?
Funny noises, some old and many new, come out of me now. Those are definitely non-stoppable. Some noises worry Joe and some are definitely laughable. You know someone really loves you when they accept all your foibles. I always tell him not to concern himself with the worrisome noises because I will find a way to alert him to a potential problem. It is the laughable noises and comments that are more worrisome to me.
Because I have pseudobulbar affect (PBA) along with the ALS, I can’t always stop laughing. People often tell us that we are funny together. It’s nice to know that other people think we get along and enjoy each other’s company (we do!).
I think we are becoming somewhat of a comedy routine. We have to live with this beast. A good laugh is thought to be better than a long crying session, but is it? Laughing can last a long time and, believe it or not, it can, and oftentimes does, turn into crying. I don’t cry to stop the laughing, I cry because I can’t stop the laughing. At least that’s what my messed-up emotions are telling me as I struggle to change the thoughts that pop into my head at those times.
You might wonder what the big deal is with laughing or crying once in a while. Why not just continue and let loose? Well most importantly it’s because it’s hard to catch my breath. That’s the worrisome part I mentioned. Joe has learned that it’s best to leave me alone (usually) during these spells. He doesn’t want to do something that will contribute to it. Other people don’t always understand about PBA and sometimes try to console me. I find that consolation only exacerbates my crying. Please be aware that if I hold up my hand it may look as if I am annoyed and I’m pushing you away, but I’m really just alerting you to the fact that I need to catch my breath and try to stop the tears.
There are so many aspects of ALS that are unknown and misunderstood. It’s a unique learning experience for PALS and their caregivers. Those of us with an intimate knowledge of ALS and its symptoms search for understanding and acceptance. We know you love us. And even if we don’t say it, we are sorry.