“The word we might use most commonly next to "suffering" is "season." But what if your experience of suffering is your life's climate? What of when there is no hope that the season will change from winter to spring as long as breath fills your lungs?”
Nate Brooks, @natejbrooks, 16th May 2024
I have been thinking a lot about suffering and personal growth recently. I have a chronic disabling illness that has become worse in the last few months, and that has been challenging to live with. I hate the way it seems like almost everything I do is more of a penance than a pleasure, because of how exhausted and in pain my body and mind are. I miss feeling like I’m actually alive, rather than in a fog of exhaustion that mutes and blurs everything. I hate that the closest I get to feeling alive is when I’m overwhelmed with distress and grief, because that’s the only emotion strong enough to cut through. I hate that when I try to think about and genuinely enjoy all the good things in my life, it lets all the bad stuff in that I’m fighting so hard to keep out.
Nate Brooks’ tweet is very pertinent to my current situation. As it happens, I do currently have some hope, because I’ve decided to see a cardiologist who specialises in PoTS and has set up a neuro-cardiology unit. I’ll start by seeing him privately and will also join his NHS waiting list. So it might be that I get some medication that actually helps, particularly with my brainfog and excessive daytime sleepiness. But the medication I’m interested in doesn’t work for everyone (a trial found sustained benefits for 36 of 60 patients[1]), and I daren’t hold too much hope. Hope deferred makes the heart sick, and my heart is pretty sick right now. It can’t hold much more hope. In any case, the waiting list for the private clinic is 7-8 weeks, and that’s a long time when you’re very sick.
I have been thinking about suffering and about the idea that suffering brings personal growth. The Bible tells us that “suffering produces perseverance; perseverance, character; and character, hope.”[2] I’d perhaps think of what I’m doing as more like ‘endurance’ than ‘perseverance’. ‘Perseverance’ feels to me like there’s an active character to it; an active choice to carry on with an action or attitude that is itself the thing bringing or causing difficulty, though it might be indirect. ‘Endurance’ feels more passive; the suffering is entirely external and there is nothing that can be done to prevent or relieve it. It also isn’t in any way a consequence of one’s own actions. It just is, and it has to be endured, because there’s nothing else to do.
I don’t know if my current situation is bringing either perseverance or endurance. If anything, I think it is wearing down my endurance. This is why people end up turning to things like alcohol, drugs, self-harm, and even suicide. We all need something to get us through; to keep us alive. The first three things I mentioned are not good things to get involved in, but if they keep us alive to endure another day, then I understand why people use them. Currently I am spending a lot of time phoning friends, or church staff, or my GP; but none of those things are available all of the time. Eventually I have to go back to my house and just… endure. If I can.
In any case, I’m not sure if the kind of suffering I’m currently experiencing is really the type that brings character. Instead, I’ve noticed that it’s when I have to live with other people that I am most shaped into a better person. Most of the time, I live alone, and I can do what I like. It doesn’t matter if I don’t tidy up after myself. I can eat what I want, when I want (assuming I have an appetite and the strength to get some food). I don’t have to consider any other people’s needs or wants. But when I spend time at my sister’s, with her family and her young children, then I can’t live like that. I have to put other people’s needs first and I have to consider what they want. That, I feel, is what shapes my character. That is what gives me the opportunity to practise patience, compassion, kindness, generosity, tolerance. But none of that is ‘suffering’.
I am told, by people who are married, that they never realised how selfish they are until they got married. Marriage can shape you and knock off the sharp edges of your character and help you grow into a better person. But the little trials and difficulties of marriage which stem from the fact that two selfish, sinful people are living together is not necessarily something that comes under the heading of ‘suffering’.
Meanwhile, the suffering that I experience from chronic illness creates much greater challenges. I want to love my sister and my nieces; to help them and serve them; to be unselfish and to put their needs first. But the fact is that my chronic illness means I often can’t do that. If I am unselfish too often, then I break my body, and have to withdraw from helping completely because I’ve ceased to be physically capable of doing it. That mental tension between wanting to help but having to walk away is, at times, soul-destroying. I hate it.
At the moment, I resent the idea that suffering brings growth. I find myself feeling that such a claim trivialises the suffering; that somehow, it implies that the suffering isn’t that bad, perhaps because the very hope of personal growth gives us an inner strength and a kind of painkilling effect that means we don’t really experience the suffering as actually painful and distressing. And it suggests that we should welcome even greater suffering, because that will bring even more personal growth.
Victoria Aquilone responded to my tweet, commenting that ““Growth” is not much to hold onto in the trenches. And it can make one think that once the suffering has achieved its utility (“growth”) that it will go away, so sufferers expend their precious energy pursuing growth in hopes of ending the suffering.” Nate Brooks replied that “"Pursuing growth in hopes of ending the suffering." - that's a subtle of the prosperity gospel, isn't it? If you just "get it" enough, the suffering will cease. That's a tough burden to live under, and one the Lord certainly doesn't expect of us in his word.”
As I read that, I suddenly realised that I did, after all, want there to be a utility to my suffering. I don’t want it to be meaningless and of no purpose. I just also don’t want there to be a purpose, because I don’t want to be grateful for my current situation. I have yet to work out how I resolve and live with that dissonance.
I like gardening, and the Bible also uses gardening terms to discuss how God interacts with us. Jesus says, “I am the true vine, and My Father is the keeper of the vineyard… every branch that does bear fruit, He prunes to make it even more fruitful.”[3] I find pruning to be a challenge, because it feels so wrong to cut good branches out of a plant. Much of the pruning is about removing old, diseased, weak, or damaged branches. But after that is done, there is also a place for removing strong branches if the plant has more than it can bear; and for shortening each of the strong branches that remains. This is cutting out good, healthy plant material, with the purpose that what remains will flourish even more.
Winter is also a challenging time for plants. It might feel like a time of suffering that has no purpose. But actually, winter can kill off disease and parasites. My roses struggle because, being in a city, the winter is often not cold enough for the plant to go fully dormant and for fungal disease to be killed off. I have to watch them carefully for diseased leaves. A strong, cold winter could actually be helpful.
And here we circle back to Nate’s tweet. What do we do when the winter is too long, or the pruning too harsh? The right length and severity of winter might help a plant fight off disease; too much, and the plant is irreversibly weakened or even killed. The right amount of pruning helps a plant flourish without becoming unbalanced or damaging itself; too much, and again, the plant is irreversibly weakened or killed.
What do we do when it seems like we’re in a harsh, overly-long winter, where if spring ever comes it will be too late? What do we do if we’ve been pruned so harshly we want to curl up and die, never daring to flourish again? What if, like Frodo, we’ve been hurt too much to ever find rest? What if Gandalf’s words to Frodo – “Alas! there are some wounds that cannot be wholly cured” – is true for us?
I tell myself that Frodo in Lord of the Rings bore a special position, analogous to Jesus as the suffering servant who died in our place, and therefore Frodo’s inability to get healing on Middle Earth says nothing about humanity. I know, from my own experience, that God can bring physical, emotional, and spiritual healing. I’m just not quite sure what all that means when, in the moment, my level of physical illness is bringing a suffering I don’t feel able to bear, and talking with God about it just opens me up to the depth of my emotional suffering.
Sometimes it seems like endurance is all I can manage.
This is not a very hopeful blog post. But I am aware that it is all too easy to wait until we are out the other side of suffering before we stand up and tell people about it. We wait for the part where we have an answer; where spring has come; where God has lifted us out of the pit and placed us on the rock. We forget that it can be just as important and helpful for others if we speak out during the times when we’re still in the pit, if only to let them know that other people share their experience. Even if we don’t know what God is doing in this situation, we cling to the knowledge that God is still God. Spring will come. Or at least Christmas.
For people who think that sick and disabled people should work: this is the reality of our lives. You might look at us and think we can sustain, say, 10 hours of work a week. That therefore we should be required to do that work. But then our health deteriorates, and if we were in paid work the necessity of giving that up is a heartbreak that we don’t need when we’re dealing with even worse illness than we are used to. It’s a hassle for the employer, too, who now has workflow problems to deal with; and it’s a burden on our colleagues that adds more guilt and disappointment to everything that we’re already feeling.
You might think that it’s unlikely we’ll deteriorate like that. I certainly didn’t expect to have this decline that I’ve had the last few months. I’m not sure what’s triggered it. But it’s happened, and I’m struggling with what it means for all the things that I have to give up or do less of. I’m glad I don’t have the burden of paid work on top; making it harder to withdraw when I need to; bringing added layers of pain.
[1] Kanjwal K, Saeed B, Karabin B; Kanjwal Y and Grubb BP (2011) Preliminary Observations Suggesting That Treatment With Modafinil Improves Fatigue in Patients With Orthostatic Intolerance. American Journal of Therapeutics 18(6)449-452 doi: 10.1097/MJT.0b013e3181da0763
[2] Romans 5:3b-4
[3] John 15:1-2