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I made an extra doctor’s visit this year.  I don’t like the doctors.  Truthfully, I don’t know many people who do, but the thought of a doctor’s office has been enough to keep me dealing with pretty severe pain for an extra six months rather than schedule an appointment.  (True story, not one of my better self-care moments.)  So when I say I made an extra doctor’s visit this year, please hear that statement with some impact.

One of my medications had failed.  Spectacularly failed.  Kept me down and from work for the better part of a week failed.  Massive pain.  Barely scraping together the work I did do.  Not acceptable.  So once I’d pulled my head far enough away from the Ibuprofen bottle, the largely ineffective Ibuprofen bottle, and managed to think clearly enough to figure out which doctor to call, I scheduled an appointment.  (And then the pain kept being bad enough that I wound up in Urgent Care just to make sure I wasn’t crazy and they gave me some better drugs.  Bless them.  So I actually saw doctors two extra times.)

I like this doctor.  (I don’t go back to any medical professional I don’t like.)  We went over my symptoms and their progression and talked pain scale.  And then she started to talk about a diagnosis and changed my medication. So far it’s mostly working.

It’s not a great diagnosis, but it’s something I’ve been waiting six years to hear.  It took three years before the symptoms were bad enough to get me to a doctor’s (this includes that six-month period I mention above).  And then three years while the first round of medications worked without a proper diagnosis.

But you can’t go to a doctor with “I think there’s more to my now symptom-less problem.”  So after six years I have a diagnosis.  I can start asking for treatments and medications that will be effective.   I can stop wondering if I’m crazy, if this will fail, guessing about a cloud of mystery.

Because now I know.  Now my doctors know.  Now we can do something.  This is the power of  a diagnosis.

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When I, as the priest, the pastor, the person who is magically suppose to know what to say, hears my parishioners telling me what their life is like because of their disability or chronic illness, I hear my story.  I hear the stories of others with disabilities and chronic illnesses that I have listened to.  And I still do not know what to say.

Do I tell my story?  Is it over-sharing?  One of the great clergy sins?  Or is it reassuring my parishioner that they are not, in fact, alone?

Do I practice my “active listening skills”?  Leaving their story in the spotlight and letting them know passively, intuitively, possibly, that I understand?

I was not far along in seminary when I told my home congregation that there were no magic words, no perfect prayer.  There is just me, praying for wisdom and the best answer to this situation, for this person, each time this happens.

So sometimes, I tell parts of my story.  In the hopes that it is reassuring.  That my story helps bring their story closer to God.

And sometimes I just listen.  Actively.  Letting their story be in the spotlight.  And hoping that they know, somehow, that I really understand.

And sometimes I listen because I cannot, on that day, tell my story.  Because it is taking all of me to be there.  And I have no extra energy to make the decisions and draw the lines that let me tell my story.  These are the days when disability truly cripples us both.  The pastor and the parishioner.

The truth is, all of these have happened.

And the truth is, all of them will happen again.

I was diagnosed with a light version of sleep apnea (sleep hypopnea) six years ago. I flew shortly after I was diagnosed and received my CPAP (machine), so I had reason to look up the regulations about flying with medical equipment.*  As my machine doesn’t use compressed air or require needles or any thing, my life is fairly simple. I pack the machine up in the carry bag that came with it, likely tuck a few books in the extra spaces, my glasses case and a rosary and I’m good. Because it’s medical equipment, it doesn’t count against my carry-on limit, so I’ll also have my purse and a laptop bag. I’m usually fine and, until this morning, I’ve never had a problem with any airline staff about this. The one time someone questioned me about the ‘extra’ bag all I had to say was “Medical equipment” and that was the end of it. Until this morning.

This morning I checked in for my flight on Relatively Major Airline, paid my charge for the bag I checked, left my bag with the staff, collected my boarding pass, and then chatted with my airport ride for a few minutes. As we were talking an airline representative came over and politely requested that I try and consolidate my bags so I would only have two. I replied that I had medical equipment, my laptop case, and my purse and that they were required to let me carry medical equipment on. Airline Representative agreed and said that I was, as part of my two carry-on bags. I replied that no, federal regulations permitted medical equipment in addition to the usual carry-on bags. I added that I had print outs of these regulations if she was interested. Airline Representative then left to check with her station manager and did not return. I boarded with all three bags, facing no opposition in security or at the gate (which was staffed by the same representative).

After this interaction I realized several things and wondered about a few others. First, what would have happened if I didn’t know my rights? Would someone else who carries medical equipment have even tried to carry it on in addition to the usual bags? Would someone who had in the past but wasn’t willing to make a minor issue out of it have merely agreed? (I could have, my purse would have fit into the bag with my medical equipment.) Then I wondered what would have been different if I’d been wearing my collar. Let me be clear, at no time was anyone rude, but I wonder if the airline representative would have pushed back against someone who was clearly clergy. Once on board the plane, I wondered if they hadn’t made an issue of it because they realized I was right or because the flight was incredibly light and it wasn’t worth the issue I seemed willing to make it. (On this they were both right and wrong. I was willing to make some fuss about it, but not so much as to miss my flight.)

What I’m left with is my response to my airport raid, who, after Airline Representative left asked me if I could fit my purse into another bag. When I replied that I probably could, but was willing to make some noise about this he seemed quietly surprised. What I didn’t tell him is that as someone who lives with chronic illnesses I get an unique chance to speak about my rights and perspective, a chance that other people sometimes need me to take. I didn’t say that as someone who looks healthy, I am no less entitled to claim these rights as someone who is in a wheelchair. I didn’t say that I speak up because other people need to hear my voice, this voice, speaking with this experience and knowledge. Someday we’ll get there.

The answer I will never know is what will happen to the next person who walks in with an ‘extra’ bag of medical equipment. I’m not responsible for that answer. I’m responsible for my actions. I wouldn’t change anything about that encounter.

*Another couple of google searches brought me back to this link.  The pertinent information is the third bullet under “Screener Checkpoints.”  There are other sites that talk about this exemption, but this one is nice and put out by the government.  The best search term I found was ‘CPAP carry on.’

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