Drugs. Once alluring, exciting, a bit frightening. Shall I try this, that? What will it be like? Will I get caught? Will I get ill? Experimenting a little, learning that you are not the bohemian adventurer you once imagined and that “a bit grey” is as far into the dark side as you are likely to get.
The next thing you know, you have two babies under three and a full-time job and the nearest you get to the world of ingesting chemicals is when exhaustion drives you to experiment with the slightly funky left-overs in the fridge (because of course all “good food” has already gone to the kids and you can’t drag yourself to the shops for something a little less dodgy to eat).
And then one day you are sitting with a pile of research papers in front of you trying to decide if feeling constantly like you have the flu, a good chance of suicidal ideation, etc. are acceptable compromises for the potential benefits of DMDs (disease modifying drugs used in treating relapsing-remitting MS in the hope they will slightly slow the progression of damage the disease inflicts with every relapse). You conclude… no. For you, no. The data seems unconvincing to someone whose disease progression has been manageable. A slight slowing but no real long term change to the course of the disease? No. The risks seemed too great to someone with two kids to raise, a primary breadwinner with a family that needs her to stay that way for a good many more years.
Time passes, symptoms become more difficult to deal with. DMDs have been dismissed but there are symptom relief drugs on offer that might help with coping with the spasms that beset you now – exhausting you and stealing precious sleep that the growing babies have only just gifted back to you. You dabble – feeling like a teenager in a club being offered something illicit. And as before, you learn that you are just not one of those people that can cope. Within a few weeks you are a zombie, and you know it’s time to give up with the experiment when you realise that not only have you zoned out in a meeting at work for god knows how long, but that you are actually dribbling.
More time, more progression, more challenges. You try diving in to the pharmacopeia once more. You haul yourself out of the pool dripping and disappointed yet again. A mixture of Prussian, Polish and Scottish/Scandinavian stock has gifted you a body oddly suited to “toughing it out” and completely unsuited to coping with pharmaceutical visitors in your central nervous system no matter how well-intentioned they are.
Again now I sit with a new drug in hand, reading the terrifying side effects leaflet, wondering if the risk is worth the possible relief from the throat and trunk spasms that have recently caused not just pain but frightening bouts of night-time choking and breathing disturbance that steal both sleep and sense of safety. I am willing to give it a try, but also ready for it to fail. My lack of faith in pharmaceuticals has encouraged me to commit heavily to mindfulness and meditation as a way of coping with this. Medical science has yet to offer me much by way of relief, let alone cure. But medics, specifically the specialist MS clinic nurse at my local hospital, have gently supported and encouraged me as I learn anew each time that I am the best medicine in this situation. The strength I need is not physical, it’s emotional. I need to have faith that I can cope, with anything that is thrown my way. I need to have faith that whilst it is painful and unpleasant this will not be worst than I can bear, that I can take more.
My dis-ease is not “in my mind” as some would have; it cannot be cured by force of will. I do not believe that faith (of any kind) can “cure me”. I understand that there are observable processes underway in my brain that are having a domino effect throughout my body. But I am no crude determinist either – those processes alone are not the sole determinants of their physical, still less their emotional, impacts on this thing I call “me”. The medical profession is rooted in the idea of caring for the other. But I think what chronic illness teaches us is that caring for self is so much more important. When the system fails us – as it does in MS, where it has no cure and few effects symptom management offerings – we patients need to focus much more on self as the ultimate pharmaceutical when it comes to symptom management. There is, it seems to me, too much emphasis on “self-healing” and not enough on “self-caring”. I don’t believe I can will MS away. But I do believe I can help myself a great deal more, have faith in my ability to self-care, to self-support.
Slowly but surely I am learning to turn the caring and nurturing instinct I have always felt for others on to myself. I recall once as a child sitting on a bus in Glasgow suddenly bursting into tears at the sight of a bent double old lady struggling to carry her shopping along the road whilst fighting a fierce Glasgow winter rainstorm. I wanted to be able to make it better for her. Now I am learning to feel about myself the way I felt about her; I am learning to care about my own suffering. Just a year ago I think I would have struggled to even name it, still less imagine that it was worthy of care.
So I pop my new drug, conscious that history would suggest this experiment will be short-lived and unsuccessful, hopeful it might break the pattern. But mainly, I give myself a warm hug and whisper “You’re doing great, hang in there, you’ll get through it.” I actively nourish myself nowadays: writing like this, meditating, and demanding of my world that I get the peace, calm, rest that I need – these are my internally generated pharmaceuticals. Pharmaceuticals cannot save us, at best they can ease the journey. But we know instinctively to offer care, and love, to those around us we see suffering. We know that when all else fails, that is the most important thing we can do. We, I, just need to remember to do that for ourselves too. I don’t where I learned not to do that, where I learned to care for others more than for myself. Perhaps some old Stoical sense that “suffering is good for us”. Or some ancestral Protestant instinct towards self-denial. But I did learn it, and un-learning it has not been easy. As I look back through this blog, I see myself learning to care of myself, learning to feel deserving of my care, learning to see the value in all of that.
I pop my new pill, hoping the side effects will be limited, hoping the effects will be good. But knowing that if they aren’t, I still have me. The tightness and tension in my throat nudges at my fear, goads me – “This is your future, I will steal your ability to breathe, this is how you will die frightened creature.” And maybe it is, but I am not afraid any more of this. I don’t seek it, but I won’t cower in its shadow or hide myself away from life for fear of it. I have no faith in pharmaceuticals, but I have great, enormous, glittering piles of faith in me. And that is worth a great deal more than any drug.