going to the ballgame

Yesterday, I went to see the Frisco RoughRiders play the San Antonio Missions with my friends C. and A.

FRRvSAM 2017

It was great because I could support both teams. I couldn’t lose!

When I asked my friends if they wanted to go, they were enthusiastic, and then asked, ‘Wait — will it be all right for you to go? It will be so hot.’

It was a reasonable question. My chronic illness makes it easy for my body to overheat quickly. After my brush with heat stroke a few years ago, my body has been even more sensitive to heat. We haven’t reached the hottest part of the summer yet, but already we’ve had heat advisories and heat indices above 105 F (40 C). It is unsafe for me to be outside for any length of time when the temps go above average human body temperature. The game was scheduled to start at 7.00 PM, and though that would be cooler than the afternoon, it was likely still to be excessively hot.

But I wanted to go. It had been so long since I had been to a baseball game. I had gone to Missions games when I was a kid, and I wanted to see them play the RoughRiders.

One of the lessons I’ve had to learn about having a chronic illness is to not let the chronic illness ruin my life.

If I stopped whenever I was in pain, if I stayed indoors every time the temperatures rose above 98 F, then I couldn’t work, play, or live. I was reminded of this earlier in the week when I read ‘I won’t apologize for having fun while chronically ill’ at The Mighty. I would figure out how to stay cool at the game.

I looked up the ballpark’s policies for what could be brought inside the park and assembled a bag of supplies. I assumed that we would be in the sun for part of the game, at least until the sun went down.

My bag included:

  • a parasol
  • a folding fan
  • a spray bottle
  • a reusable ice pack
  • two instant cold packs
  • sunscreen lotion
  • insect repellant
  • a bottle filled with Gatorade and ice

It also happened to be ‘Thirsty Thursday’, which meant all drinks were $1 and cups of water with ice were free. I would be able to stay well-hydrated during the game. I made sure to wear light and loose clothing and noted the location of the first aid tent, just in case.

And you know what? It turned out that I was over-prepared. When we found our seats, our section was already in the shade. There was a consistent and gentle breeze. Despite the clear sky, beating sun, and heat advisory, it was surprisingly pleasant. The only items I used from my bag were the spray bottle, the Gatorade, and insect repellant. It was a thousand times better than what I was expecting.

Of course, I’m exhausted today. Being outside for four hours still wore me out, even if it wasn’t sweltering. But I budgeted for the exhaustion; that’s part of having a chronic illness.

Baseball, fireworks, and friends — what more could you ask for in a fine summer evening?

Photo: The Frisco RoughRiders vs. San Antonio Missions in Dr. Pepper Park, Frisco, TX.

how do we treat the sick?

There’s been quite the flurry of noise on the Internet about the American Health Care Act that was passed in the House of Representatives today. Something that caught my attention is an interview with Mo Brooks (R, Rep. AL), in which he said:

‘People who lead good lives, they’re healthy, they’ve done the things to keep their bodies healthy. And right now, those are the people — who’ve done things the right way — that are seeing their costs skyrocketing.’

Source: CNN Interview with Mo Brooks by Jake Tapper (around 3.20 of the clip)

His statements imply that people who lead healthy (‘good’) lifestyles don’t have pre-existing conditions, which also implies that people who do get sick or have pre-existing conditions somehow did something to deserve their poor health.

Brooks does immediately add, ‘Now, in fairness, many of the people who have pre-existing conditions have those conditions through no fault of their own.’

It’s the earlier statement that is getting the headlines and the attention, and for good reason. The problem here is in placing a moral value on a person’s lifestyle — whether they exercise regularly or diet or eat well — which is what the first statement does: people who lead ‘good lives’, who have done things ‘the right way.’ How, then, do you reconcile the second statement, that those with pre-existing conditions are not at fault for having them, with the first? You have already established the premise that ‘good people’ don’t have pre-existing conditions. So how can someone have a pre-existing condition and not have done something to deserve his or her condition?

This is not a new question. I am reminded of the disciples asking Jesus when they see a man blind from birth: ‘Rabbi, who sinned, this man or his parents, that he was born blind?’ (John 9.2) We might not express it as outright as that, but we still sometimes have that sentiment that if something bad happens to someone, then they probably deserved it: this idea of, ‘Well, they had it coming.’

But we need to remember Jesus’s answer: ‘Neither this man nor his parents sinned; but this happened so that the works of God might be displayed in him.’ (John 9.3)

Granted, in the gospel, the work of God is Jesus restoring the man’s sight, which isn’t exactly something we can expect to happen today (it wasn’t common then, either). That doesn’t mean we can write off Jesus’s answer, though.

Neither this man nor his parents sinned; but this happened so that the works of God might be displayed in him.

Often I see the focus of this passage placed in the following sentence or in the events after the miraculous healing, to the point that this sentence is overlooked. If this sentence is evoked, it’s usually done after some misfortune or tragedy, along with the platitude, ‘All things happen for a reason’ (with which I politely disagree, but that is another subject).

What are the works of God and how might they be displayed? What does that look like today? Right now, in the wake of the AHCA passing the House, this is what I hear from that passage:

The works of God are displayed in how we treat the sick, the poor, and the needy.

Our words, our thoughts, and our actions: what are they when we encounter someone who is ill? What are they when we encounter someone who is chronically ill or differently abled? Not just how we treat that person as an individual; but how do we treat them as a group when we shape our ideas about health care and when we vote? Are we treating the sick, the poor, and the needy in such a way that it displays the work of God?

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what not to say to someone with chronic pain

Yesterday was not a good day for me. Living on the plains, even the southern tip of them, means that the weather changes frequently, often drastically, dropping (or rising) some twenty degrees Fahrenheit as the wind shifts from north to south. One of the ways rheumatoid arthritis affects my life is that it flares up whenever the weather changes, and, in North Texas, that’s every few days or so, especially as we trudge onward into spring. Additionally, I am unable to take one of my RA medications until I have fully recovered from having glandular fever/mono, which means I am more susceptible to flare-ups.

So while I laid in bed, having stacked my OTC and prescription painkillers and after taking a hot bath that afforded only some relief, I saw that a friend had shared the article ‘19 Things People with Chronic Pain Wish Others Would Stop Saying’ from The Mighty. As I read the article, I found myself agreeing with every. single. one.

I understand not knowing what to say when you’re sympathetic but can’t do anything. I’ve felt that way before, when faced with others’ situations. I usually inwardly forgive the speaker, making allowances for their being an acquaintance, stranger, or ignorant about rheumatoid arthritis. Even so, these are my three biggest bugbears:

‘Have you tried yoga/bee sting therapy/gluten-free diet/turmeric/<random cure-all here>?’

Rheumatoid arthritis is a complicated illness that is not going to be solved by adding more turmeric or Omega-3s to my diet. My treatment is between myself and specialists in rheumatology and autoimmune diseases. If there is some credence to bee sting therapy, I am sure there are scientists researching bee venom to isolate and synthesize its miracle properties. In the meantime, no, I am not going to go out and get stung by bees.

I understand the impulse to be helpful but suggestions like that are both unsolicited and under-informed. Offering advice for someone else’s health condition is also intrusive and bad-mannered because it’s none of your business. You don’t have to provide a solution to their problem; very likely you can’t.

It would be better to say, ‘I’m sorry you’re in pain. What are things you find helpful to cope with it?’ Even better, ask if there is anything you can do to help them.

‘Oh, you’re too young!’

Obviously, I’m not. I developed RA at age 20 and was diagnosed at age 21; a bit unusual, but not impossible. Being a young adult does not negate the fact that I experience arthritic pain that many do not feel until they are in their sixties or seventies. I have lived for eleven years with this pain and will live with it for the rest of my life.

Instead, acknowledge the fact that it must be difficult to live with this kind of illness from a young age: “Wow, that must be rough. I’m sorry you’re hurting.”

‘Get well soon!’

Again, I understand the sentiment: that I feel better soon. But there is no cure for rheumatoid arthritis. I will never be ‘well.’ I may be less stiff or in less pain, but I will never stop having rheumatoid arthritis and everything that is accessory to it.

Rheumatoid arthritis is also inconsistent to the outside observer. Yesterday I was bedridden for most of the day; today, I got out of bed somewhat stiffly, but showered, dressed, and went to work with a level of discomfort and pain that is invisible to the outside observer. But that’s because the weather didn’t change between yesterday and today, or resting yesterday meant that I had the energy to work today, or some unknown variable.

So replace ‘get well soon’ with what you’re really saying: ‘I hope you feel better soon’ or ‘I hope the pain decreases so that you can manage better.’

And, always, instead of soliciting help, ask: ‘How can I help you manage?’

Counting spoons

It was such a beautiful day. F. and I sat out on Castle Sands, watching the waves and soaking in the sun.

IMG_8414Can you spot what’s unusual about this picture? Having trouble? What you don’t see is that I’m in the middle of a flare up. F. helped me up that rock and then helped me down again. The point of the picture is to show how normal I look even during a flare up. Rheumatoid Arthritis is mostly an invisible disease.

I’m one of the lucky ones. After a year and a half of aggressive treatment I went into remission. No bone damage. But that doesn’t mean the RA has gone away. Seven years on and I still ache in the mornings. Sometimes I’m just too tired to do, well, anything. This last flare up is the worst I’ve had in a while — I say is, because it isn’t fully gone yet. I went in today for a follow-up appointment on the steroids they gave me a few weeks ago: the steroids worked for two weeks, and now the problem joints are hurting again. I might be cycling again and walking without a cane, but it still hurts when people shake my hand during the passing of the peace at church.

IMG_8399This flare up has reminded me what it’s like to have RA. Not that I had forgotten the fact, but I had been in remission long enough that I didn’t have to think twice before every activity, to plan my meals around what my hands and knees could handle. (A moment to sing praises: F. brought a bar stool for my kitchen! Now I don’t have to stand on achey feet, ankles, knees, and hips if I need to cook on bad days. Though I wish I could have seen him cycling across town while carrying it…) To refer to The Spoon Theory, I had been in remission long enough that I had become lazy about keeping track of my spoons.

What causes a flare up? No one knows. No one knows what causes RA to start with, let alone why it goes into remission or comes back. Personally, I know I’m affected by changes in weather and spring this year has been unusually unpredictable. I’m also affected by stress, something I am intimately familiar with since I am in the final months of my PhD.

I may not look sick, but I am. The way I see it, I can either give up or keep fighting. This is my life and I want it full to the brim with adventure, ambition, laughter, and love. So I will keep pressing on. RA has taught me to recognise the noble in the mundane, to realise that being faithful in my life here is as important as saving the world. I will dream, I will compromise, I will accomplish — all while counting spoons.