Breast Cancer Awareness Month reminds me of a stinging experience I had a few years ago. I once approached someone who schedules a lecture series focused on coping with cancer about speaking in one of her programs. She explained that, because I didn’t have cancer, there was no way my experience with chronic illness would resonate with those whom she served, who were cancer patients. Even when I explained that I had had to take a chemotherapy drug for more than 10 years (with all the accompanying side effects, etc.), had lost all of my hair, faced death, and knew well that many of the issues cancer patients face are also ones that I and others with non-cancer chronic illnesses face (and in fact, many people with lupus and other illnesses have also had cancer) she was unmoved. I wasn’t part of the “club,” so couldn’t participate in her program.
I walked away saddened that there could be such a divide between those of us with incurable, ongoing serious illness and those with the very serious diagnosis of cancer, which also can be an ongoing concern and, in some cases, incurable. Of course, funding, research, and other considerations probably play a role in demarkating who works with whom. But, I also thought, if only we worked more diligently at building bridges, how much more strength we could glean one from another. I know, for example, that Scripture verses and lessons on living with illness are not only for those with one or another disease. I know that Jesus did not offer healing only to people with one particular diagnosis. Love, mercy, understanding, compassion, fellowship, hope, light, and salvation – these are not merely for someone of a certain age and ailment. Suffering is suffering – no “First Class and Coach,” no “Better and Lesser.”
If I only ministered to lupus patients, I would be limiting the scope of what God can do through me. If we only keep to our own disease groups, we exclude other children of God – something Jesus never did.
So, I’ll keep trying to build bridges and find common ground, and I encourage us all to not be disheartened when we are rejected because “we don’t understand.” We must keep praying and working, because sometime, somewhere, those who turn from us will discover that we are stronger together than in boxes that limit compassion, imagination, and caring.
We’re all in this illness thing together!
A few years ago, someone asked me if I was in constant, chronic pain. I replied, “I am always aware of it.” I think my response was a bit confusing to the person who asked, and he did look puzzled. But it was a more accurate description of the place of chronic pain in my life.
Yes, I experience ongoing chronic pain, so I am always aware of it. But my state of mind and spirit is not one hemmed in by chronic pain. And for good reason. If all I thought of was my pain, it would take over my attitudes toward all else, too. To be “in” pain would mean that it was all-encompassing, all around and in me, to the exclusion of anything else.
But, even with the pain I have, which can be very severe, I recognize other qualities in my life and spirit, too, that help me balance the place that pain has. Carefulness is one of those qualities – being protective of the joints that hurt and doing what my docs suggest to help them heal, even a little. And another quality is gentleness. I find that the more I am gentle with pain, the more calm my spirit is, and the more balanced I feel.
I once saw a world-class tennis player beat up on herself – truly. She had her legs taped nearly shoe-top t0 thigh, and could not move as agily as she needed to keep up with her opponent. Finally, utterly frustrated, she took her tennis raquet and began to whack her legs one, then the other. Needless to say, she lost the match. And I have to think that whatever injury she’d tried to protect with the tape was worsened by her self-infliction of more injury.
But, when we dig deep and find that part of us that is gentle, we can turn from digging into our pain. And, when we turn to our gentle and loving God, we can bring even more soul-deep balm and therein find greater strength.
I was recently rebuffed by someone when I tried to be uplifting in conversation with someone who is very ill. The person who rebuffed me was adamant about a particularly negative ramification of illness and refused to entertain the notion that there could be anything positive coming from it at all.
Well, of course, with such refusal, there would not and probably never could be!
But as impossible as some situations are, if we have to live with them, I’ve always thought we do need to try to find another way to approach them so we’re not weighed down in the mire by negativity. Sometimes we can approach them through an open window – and obvious positive (such as the fact that, because I have no hair and have to wear wigs – the negative – I never do have a bad hair day – the positive). But sometimes, we have to go through a back door – because of illness/medication/other, nothing tastes good, we can look to other sensations to give us pleasure (temperature, texture, sense-memory).
What’s the point of this attitude-gymnastics? The point is that, the more we live in total negativity, the more negative our lives will be. Not a good approach, especially when all else is very dire in our lives.
Faith gives me hope, which in turn gives me a resilient ability to find something positive about negative situations. Those who have no faith might have a more difficult time of it, but it still makes logical sense that, if we do want to “get well” in any way – body, mind, spirit – we have to believe that “get well” is possible. Otherwise, we’ll spin our wheels, pounding on the front door with increasingly painful (proverbial) fists.
I apply my desire to find a positive in the negative to other things, too. Tis the season for ants to try to find their way into homes, and they seem to think they’ve found a “front door” in one of my kitchen cupboards. Not a fun thing, to be sure, and one that takes time to manage and monitor. But, I’ve found a positive even here! Yes, I’ve managed to better arrange my cupboard, refreshing it even as the ants come and go, with the change of season.
After reading about the new and very specific medical coding that is being put in place because of the new healthcare regs, several odd-sounding scenarios struck me as funny, and I couldn’t resist sharing my humor with my docs (and I couldn’t wait to see if this drill-down-deep coding system was for real). So, to my cardiologist, I said, “I will say I’m glad to report no encounters with squirrels.”
We laughed, and then my doc insisted typing in “squirrel” into the search bar of the coding app. Sure enough, besides “encounter with squirrel,” there was “subsequent encounter with squirrel”…and so on. Also, there was “bitten by squirrel,” etc. In all, I think there are 6-8 codes related to squirrels!
After the wondering (what is an encounter with a squirrel, as opposed to “bitten by squirrel?”), and sharing a good laugh, I turned to the more serious topic of how we communicate what ails us. True, it might seem outlandish to have to go into such detail with a coding system. However, there is a lot of good in fine-tuning our words so that our doctors know exactly how we are feeling. After all, if they don’t know, they cannot readour minds – and our overall healthcare might suffer.
I have long-recommended that we patients each develop our own “health thesaurus” so that we can specifically (or as nearly as possible) describe our symptoms and the conditions under which we feel them. I’ve also encouraged each of us to understand as much as we possibly can about our illnesses so that we can link what is happening with us with verbiage that will resonate with the healthcare professional trying to understand. So, in this regard, a more specific coding system might be helpful…to a point.
As our docs struggle to navigate the maze of those oh-so-detailed descriptions and find just the right code to fit our health and lives, we will probably have to be more than a little patient. But, too, we will no doubt find lots to chuckle over…even if it is that we have no encounters with squirrels to report!