There are a lot of hard truths that come with illness.
There's this unexpected forced acceptance of several aspects in life that we are faced with. It can include the consistent uncontrollable pain. It can include unpredictable flare-ups and episodes that seem to have no obvious point of origin. It can mean saying goodbye to parts of your life and parts of your self that you had no intention of leaving behind. One of the most complicated aspects is that it is chronic, but not necessarily permanent. You learn to let your illness steer you, in a sense, without allowing it to completely take over. Fighting it, tooth and nail, can often cause more suffering, but allowing it to squash your hope is just as damaging.
So you hold on to hope and you cling to the idea that just because you can't do something right now doesn't mean that you won't be able to do it at a later date.
I mean, there is always more research and more tests and more treatments that are coming down the pipeline. There are always going to be advances and improvements, but even more than that, symptoms and experiences and triggers can change over time.
So we hope.
We hope and we pray and we hold on to that little bit of light because we know that it could happen. We *could* miraculously wake up one day symptom-free. We *might* try something new and suddenly feel better.
It could happen.
It has happened for other people with similar diseases.... right?
Even with this light and this hopefulness, reality does kick us back sometimes though. It reminds us that, although hope is a positive thing, we do not control the outcome. We cannot have complete control of our illnesses. We can have all of this hope and search for the light in every way we can, and yet our reality can be a staggering disappointment in many areas.
To me it feels like a lighthouse.
You can be at sea, utterly lost, and drowning. You are surrounded by water and animals that can be the death of you. You are drowning in exhaustion but not dying. You are surviving, ever so slightly, and you are desperately scanning the horizon for that flash of light that you know can save you. A little light - so far away it seems only a pinpoint in the sky - but it's there. Sometimes the light fills you with hope, and you can manage to see the beauty in your situation. You can see the water for this gleaming serenity and you can focus on the moonlight and how a beach is always portrayed as a calming place. You can take a few seconds to enjoy the sounds of the waves, or a ship far off in the distance. For a mere moment you forget that your situation is still difficult. Then, the light passes and you are plunged back into the darkness.
The trouble during this time is believing and knowing that the light is still there and will come back. Holding onto that belief is the key to fighting for your life. Knowing that the light always comes back around is the difference between giving up and trying to kick, float, push, or coast towards that light.
It can be the difference between seeing the beauty around you and knowing you can survive or allowing the depth and the darkness envelop you until you don't believe in a light anymore.
The realities of certain chronic illnesses can come with truths that are hard to accept, but even more difficult to talk about.
Things like canes, walkers, or wheelchairs. Adult diapers and ruined clothing. Buckets or portable toilets tucked away in the back seats of vehicles. Constant medications (especially now that pills are being demonized everywhere you turn). Stares. Glares. Judgement. Pity. Failures: failure to control, failure to do what you could do only a week/a year/a month ago, failure to meet expectations, failure to fulfill certain duties, failure to keep a career, failure to follow-through on plans. Needles. Appointments. Accidents. Mental fogginess and missing memories. Missed opportunities. Stress... so much stress. Sleepless nights. Slept-through days. Slept-through weeks, for that matter.
The list of harsh realities goes on and on. Ocean wide, ocean deep, and we are somewhere there, surrounded. It is frightening and beautiful at the same time. We keep moving and learning and always surviving. We keep a look out for that lighthouse, not knowing how far we are from shore, but always clinging to the knowledge that the lighthouse exists -> that even if we never make it all the way to the lighthouse, to dry land that promises to keep us out of the depths of that darkness, that at least the light will illuminate our path and allow us to go in the right direction, and help us to see everything else around us. It can help us to focus on other things other than just surviving.
So keep finding your lighthouse.
It's there.
I promise.
First published May 14 2018.
