Today, I had the fortune of having a mini class-reunion of sorts; naturally I had to be stoned on my medication in order to attend, and the loudness of all of the chatter in the restaurant was only tempered by a fair dose of clonazepam, baclofen, nortriptyline, gabapentin, paracetamol and a couple of other things. It was interesting to see how quickly since the last time, people’s lives had moved on. Of those who attended, all were in serious, long-term committed relationships, two had married. Others couldn’t attend because of work and the great distances they had to travel, and others still had family-type commitments. Professional training, finishing off qualifications, taking on multiple degrees, and still able to juggle having dinner with us.
Now, I usually avoid social gatherings out of the house; whilst I can get out in my wheelchair when reclining, I’m usually warned by relatives to avoid it if possible as my health can make a scene of its own accord, as it briefly did this evening. Crippling chest spasms – thankfully, I was in a class of bona fide geniuses who are now doctors, so I knew I was in good hands if things went wrong. But I reclined at the restaurant with my feet on the wheelchair to regulate my blood-pressure, and eventually with more medication, it abated.
Thereafter, I had to attend another venue where I expected to be picked up, but it would appear life had other plans and I was delayed for an hour and a half. A decent hour and a half – but I had to at the hour mark, ask for some assistance to use the restroom.
When in there, I saw an empty roll of tissue paper (or whatever the cardboard type insert is) and its emptiness horrified me. I of course replaced it, praying I wouldn’t catch e. Coli or some bizarre infection from it. What surprised me was how much a roll of tissue paper could speak to me.
But I couldn’t quite interpret what it said. Either it suggested that my life had run out of steam, that I was quite literally empty with nothing of substance or use to anyone and a kind of annoyance, as an empty roll in a public restroom might be, or that I had quite literally (again) been used up.
The thing with Severe ME, chronic Neuro-Lyme Disease, Ehlers-Danlos Syndrome, Fibromyalgia, some sort of congenital myopathy, trigeminal neuralgia, migraines, Multiple Chemical Sensitivity, Postural Orthostatic Tachycardia Syndrome, Osteoporosis, scoliosis, and whatever else I’m not currently remembering…. is that all of these things sap you to a husk of what one once was. Sure, today I was lucid compared to the last reunion three years ago – thankfully clonazepam helps with brain-fog and spasms to some degree – but there is a kind of emptiness I noticed as I was being wheeled into this public restroom. I remembered Elvis – what would happen if I had gone in and not made it out?
What would have been left of me, and by what would I have been remembered. For a brief moment I pitied myself, yet on the other hand I couldn’t help but consider what kind of relief it might be to others if I was gone. I returned home this evening, was helped into my room after a short rest-period, and helped to change my clothing, and then I said to the person who helped me, I’m in extreme pain.
“I’m off, call me if you need me.” And she shut the door tightly on me. I realised then that I had sucked this person dry to the point of exhaustion, and that my pain levels were really no consideration of hers. That I was unable to eat from exhaustion annoyed everyone anyhow, but what was treacherous was the coldness with which the door was gently slammed (!) on me as I complained of being in severe pain. Ho hum; technically it’s not their business unless I need an ambulance, and in honesty, perhaps I might if this goes on.
However, I have clearly tugged at the toilet-roll a little too much in my years of sickness, having just passed the ten year mark from when it all started, and much like an empty roll, it felt as if I had no purpose other than to be discarded.
And that brings me to the question of meaning; what is it the chronically ill have to do in order to live fulfilling lives? A couple of years ago an aunt of mine said, if not admonished, (to) me -” you know disabled people can still get married, they can still study,” and so on – which in and of it self is true, but of course it cannot apply to me in my current state. I try to read as much as I can, and study what interests me in-between scheduling hospital appointments and trying to sleep, sometimes when no amount of sedation is of any use. A relationship – at least a religiously sanctioned one – is out of the question and that’s fine. It is something with which I can live, but can I live with having to sleep so much?
Chronic illness is isolating in this regard – I’m surrounded by people – yet why do I feel me, or that the likes of me, are so alone? What difference does any purpose or goal I set for myself, such as a half hour’s study in a day, or making it to the kitchen once a day for a meal, or trying to spend a half hour in total silence..what does any of that have to do with serving another human being other than myself?
Not long ago I found myself nearly paralysed to the couch, unable to move because my heart and chest felt like they were on the verge of explosion; someone said, “I’ve got to go”, to which I curtly responded, “so, I could be dying but you need to go to sleep? Fair enough.” I know I shouldn’t have been snarky, and I was likely not going to die that night (nonetheless afraid of having to call an ambulance), but still, that I needed or expected someone to assist or serve me when I had nothing in exchange to give made me sound like a selfish jerk.
With chronic, treacherous illnesses, where there is no end in sight or no real treatment available, especially where the illnesses overlap (my two attempts at hydrotherapy and the subsequent ambulance visits thereafter resulted in the cancellation of this physiotherapy because I could not just cope, and my doctor considered it dangerous), and very little can be done at a very slow pace, one considers the meaning of life. And of death.
You can’t help but ask, would others be better off if you died, because then they would have one less major burden in their life? I don’t anticipate death would bring sweet relief, and I’m not at all saying it’s an escape. Nor am I encouraging anyone to seek it.
We’ve all had those three a.m conversations with ourselves in terms of “what is the meaning of life?” – yet my existential question is, what could I contribute to make meaning?
Meaning in this sense seems inherently selfish – if I had meaning, it’d make me feel better primarily, with a service rendered to others secondary. Is the order of priorities wrong? Probably. But what is there about which I can do with regard to it? It seems all we can do in these states is to serve ourselves.
I happen to be a theist, and at some level find myself having to accept that the gift of life is still a gift, whatever the hardship. And that Graces abound – I am not poor, I have friends, I can finally wear my clothes without screaming in pain, I can tolerate lights and sounds to some extent because I have expensive earplugs, ear-defenders, sunglasses at the ready, sedatives to depress my central nervous system. But to whom is the service rendered if not to me?
What I am saying is…well, like the empty piece of cardboard roll, I feel pulled empty; and the longer this illness goes on, I’m pulling on the toilet paper of the lives of those who have to look after me. I saw tonight what happens when I complain of pain when others are running on empty.
I am thankful for the graces that I have, and the humanity with which others are so wonderful at/in serving me; yet my soul feels as if it’s dying and decaying, and that life is somehow passing me by whilst I live this existence of illness. I’d hate to think that this is the reason for which I was created and set into being, it is hard to accept. I don’t want to be a hero and ‘give meaning’ to someone else’s life, the white knight archetype or anything – I’d just like to give back.
Is the purpose of my existence to surrender? To turn almost entirely inwards, to steer into the sickness and its usual limitations and essentially become a hermit who lives a life of prayer. As the brilliant writer/author/theologian Sara Maitland once said (I paraphrase), “The more time for prayer one has, the more interesting prayer gets.” And she aspires to about 80 percent silence, being pulled into religious experience.
I, long ago, gave up on doing advocacy for these illnesses, as alas, I create an echo-chamber; at one point I thought that advocating for this state of illness would serve others; but life is precious, tiring, and busy. Maybe I might lay in bed henceforth, as I usually do, and just contemplate myself at the point of death, because then and then only might I wake up to the fact that I’m a fickle and frail being, or will I perhaps wake up to opportunities I currently cannot see?
But that’s not to say I didn’t realise the same thing, the emptiness, the void of meaning in my life and actions, when it came to having run out of toilet-paper in that public restroom.