There are a lot of ways to suffer on this planet. Haiti, cancer, health care, ALS. As long as there are humans in the world, there will be suffering. However, if you’re inclined to support a cause and you haven’t picked one yet, this blog is intended to help you understand what it’s like to be trapped in a body that has ALS.
It begins innocently enough. First, a strange tremor, then, an unaccountably violent fall. A shoulder that won’t heal, then a hand. The kind of panic that you feel in those early months is as palpable as the panic you will later feel when you have lost control of everything. You are told you have ALS. The average person lives 2-5 years with the disease. But that’s the easy part.
When you have ALS, you begin your post-graduate study in the discipline of losing things. You lose muscle in your hands and ankles so you drop things and trip a lot. It’s almost comical. Pretty soon, you lose the ability to button a button, or to cut something with a pair of scissors and then, to pick up a fork, spoon or pen. Your typing devolves until you peck the words one letter at a time. Then you get someone to type for you. This goes well, until eventually, no one can understand you so they don’t know what to type. You lose muscles in your hands and ankles. You have to wear braces and sensible shoes. It doesn’t seem like that big of a deal, but now, you fall all the time. You break bones. They don’t heal. You begin with a cane and then your friend paints a walker leopard-skin, but before you can make friends with the walker, you fall backwards twice onto the back of your head. Now you’re in a wheelchair full-time.
It’s okay though. Your friend reminds you that now that you can’t lift your hands over your head to put on your sports bra, you can go back to the lacey sexy ones that hook in the back that you love. You threw all your sexy bras out when you couldn’t hook them yourself and so you get to buy a bunch of new ones. Mostly red. When you lament being stuck in a wheelchair, you friend reminds you that you can un-retire your sexy Fuck Me pumps. You give away the sensible shoes. You teach people how to do your hair and make-up. You buy orthotic devices so you can feed yourself. You live a normal life, but you happen to be in a wheelchair.
You lose sleep. At first, your problems are self-inflicted. You lie awake, wondering about death, loss and when and how it will all happen. Later, you lose sleep because your blanket falls off you and you aren’t strong enough to lift it back up or you swallow too much air with your breathing machine and get nauseous and burpy. Or maybe you accidentally roll on your back and you can’t roll back to your side. It’s too hard to breathe when you’re lying on your back.
You’re tired a lot. This seems like the cruelest loss of all. Each nap represents hours that can’t be returned. Hours that you’re running out of. There’s too much to say and too much to do, yet you feel like someone has placed a pile of bricks on your chest. You try to read a story aloud to your little niece and nephew and have to give up halfway through the picture book. You go out for lunch and you feel like you spent the day at Six Flags in the blazing sun. You can summon up enough air to be loud enough to be heard or you can articulate clearly, but you can’t do both at the same time.
You get tired eating. Chewing is an effort and swallowing has to be done with full and complete attention on the task. Choking might kill you. You eat fattening and irresistible food because you have decided you will not get a feeding tube, so you want to keep up your caloric intake at all costs. Sometimes, you choke on saliva. You breathe so much of it down your esophagus that you gag and throw up the saliva. Then, you find a great medication do deal with the saliva, but it dries you out so much that you have cracks in the corners of your mouth that make it painful to smile or to open wide. If you’re too dry, it’s hard to talk. If you have too much saliva, it’s hard to talk. If you’re tired, it’s hard to talk. It gets to a point where all you want to do is get lost in stories or music or poetry.
You start getting pressure sores. You cramp up painfully. Your legs tremor out of control. It’s the leg tremors that wake you up early in the morning. Your legs shake so much it’s hard for people to get you out of bed in the morning and onto the toilet because they have no stable pivot point. Your feet think they belong to Donald O’Connor and your legs are identical to Ray Bolger’s in The Wizard of Oz.
You are 100% dependent on other people. You begin needing a helper first thing in the morning for dressing and showers and last thing in the evening for the reverse. Then you need someone to cook for you, to do your make-up, and pretty soon you can’t cook or serve food. When you can no longer use the toilet by yourself or bring your hand to your mouth to eat or lift a glass of water to drink you need full-time care. This is not only challenging to your privacy, but it’s impossible to afford on a long-term basis. With caregiver bills and other related expenses in the 12,000-15,000 a month area you face the sad fact that there is an up-side to the fact that you are dying, which is that you can’t really afford to live much longer anyway. You are never alone except when you are in bed and a feeling of dread comes over you when you wonder what will happen if you get trapped under the covers and can’t reach the bell for help. Even if someone was interested in a romantic relationship with you, you would never be alone to have one anyway.
Your life is 180 degrees away from where you thought it would be at this point. Everything that you thought you couldn’t live without, you have had to let go of. Everything you will lose in the future will take you further and further away from the larger world. You feel like you are on a snowdrift riding a brisk current away from the mainland.
You make fledgling efforts to communicate. You try to stay sassy on Facebook. You laugh a lot. You say “Goodbye” to people from out of town and you don’t know if you are saying “Goodbye” or “Goodbye.” You do this with your son and it is almost but not quite unbearable.
You are being dismantled piece by piece like a newspaper chain. You watch in slow motion as everything is lost. You play and you replay the videos and recordings of the old you and you recognize her in a very full way that you don’t recognize in recent videos, which makes you think, “Who is that woman with such jerky, awkward gestures? And what is she saying? I can’t understand the way she slurs her words. Oh, my bad - it’s me.”
You know how life can knock the wind out of you so suddenly and you envy the innocence of the rest of the people around you who don’t realize that just like you they could die at any moment. You want people to know how hard it is, but you don’t want them to feel sorry for you or to think you’re brave or to give you the Olympic Gold Medal for Suffering. You want people to see how easy it would be for them to wake up one morning and decide to give up their self-inflicted pain and enjoy their wonderful life. How easy it is to have a great day when you can make and eat you own toast, throw on your own clothes, go out into the world and do whatever you damn well feel like.
You want people to live all the life you’re going to miss.