Keep On Keepin' On

If living with ALS was a bus ride, I would say that the trip has turned bumpy and unpleasant. I’m feeling motion sick much of the time and when I look down the road I can see that it’s not going to improve. If anything, what lies ahead are steep, rocky, and treacherous road conditions; nothing I’m excited about. There is no remission with ALS, no plateaus, and I’m going down at a pretty steady pace.

In September, I had a peg-tube permanently placed through the skin of my abdomen which now delivers food and medicine directly into my stomach. It’s a soft plastic tube that is now just a part of me. In the mornings I have a liquid breakfast of champions (and no, it’s not mushed up Wheaties), it’s the equivalent of drinking Boost. For the rest of the day I still eat food but it can be a tiring process. With reduced mobility in my only working arm (the last of my limbs),  and the muscles in and around my mouth and throat having weakened, I can only describing eating in one word-arduous.

It’s been several months now since I’ve walked; I’ve been getting around slowly in my power chair. Thankfully in October we purchased a wheelchair accessible van and it has been worth its weight in gold! Trying to plan far enough in advance and arranging Handi-dart was limiting my independence a great deal. Having said that, I was very appreciative of their services when I was using it. October also marked the installation of a free standing lift in my bedroom. Dino can still transfer me but my homecare workers and everyone else use the lift.

I receive homecare services 7 days a week in the mornings. I have mostly regular workers coming and honestly I couldn’t have chosen better people myself. I am so grateful to have them. Afternoons consist of outings and appointments, or leisurely days at home. I don’t venture out much on my own anymore as I can’t trust that my left hand will cooperate with me. There is an option for my chair to be moved manually by someone else, but I am keeping my independence as long as I possibly can. I already need assistance with almost everything, being able to choose where I go and when provides me with at least some say in my world.  If you’re thinking to yourself that what I am describing must really suck, I’m here to tell you…it does.

Visits with friends and family are lightly sprinkled throughout my calendar which always brings me much joy. Having said that, and being as social as I am, I’m finding that visits are best kept short and sweet. Drop in visits have become too much for me now as I have such limited energy in my day. Not long ago I was able to push through but I just can’t muster the strength anymore. When my body or mouth is done, it’s done.

Talking has also become quite a tiring process. The best way to describe it would be that the back of my throat and tongue feel frozen. There is a thickness to my speech now. Properly articulating words is exhausting and difficult. I have to repeat myself more than I would like and to say that it’s frustrating is such an understatement. It’s like trying to catch a twenty dollar bill you dropped on a windy day. At some point, you just say to yourself, F#*k it, this isn’t worth my time. So even though I want to say something, I just stay quiet.

We now have Google Home set up and I recently received an eye-operated communication device. I am able to generate speech by creating words or utilizing pre-programmed phrases. The camera is calibrated to my eye and I look at letters or phrases and then they appear on my screen. When I am done I can send the message (i.e. texts) or have the system speak. It will definitely take some getting used to as it tires my eyes and dries them out. But when I am no longer able to speak I will still have a way to tell Dino and the kids to take Dolce out to pee! Once a wife and mother, always a wife and mother. Haha.

Speaking of which, my loving mother Faye still comes every week to clean the house and do the laundry. Her assistance and support continues to be invaluable. Meals continue to be dropped off by friends and family and each and every one of them are greatly appreciated.

When I start to think about all the things I’ve been forced to let go of as a result of this disease, it astounds me. Things that used to consume me at times seem completely meaningless now. I had self-awareness before and tried not to sweat the small things, but let’s face it, we all sweat some of them. I think I am in self-preservation mode. I have no control anymore and I believe my mind is protecting me in a way from outside stressors that I just couldn’t tolerate. I am exposed, vulnerable, and in need of help; day in and day out. To think about worrying if my mascara was smudged or not is now humorous to me. I haven’t worn make up in so long I’ve forgotten what it feels like to care about it. And I feel this way about SO many things. In some ways, it’s quite liberating. Perhaps a silver lining? (I just caught myself chuckling).

As bleak as some of this seems, or is, I still find joy in my life. Pure, blissful joy. Sometimes it’s when I cry from laughing so hard, sharing moments with friends and family, snuggling with Dolce, taking my first sip of coffee (mmm..), or appreciating the beauty of nature and everything in between. Joy is still very much a part of my life. Each and every day I actively try to choose happiness. It’s not always an easy task, in fact sometimes it’s downright excruciating, but I believe it is a choice. I am told by many that they admire my positivity, that I have shown grace throughout the stages of this horrible disease, and that I always seem to have a smile on my face. I can humbly accept these compliments but it doesn’t mean that the darkness doesn’t creep in at times. I know the road is not long and it can still be hard for me to accept. If I knew then where the bus was headed, I would have taken the train instead. But here I am. This is my life. Might as well enjoy the ride for as long as I can.