Sunday, September 13, 2009


This afternoon, while laying in bed with a particularly nasty headache, I was listening to a show on NPR called “Fresh Air Weekend.” (I listen to Fresh Air during the week too.) The last interview of the program was with two women, both of whom had been diagnosed with cancer in their late 20s, and both of whom have been published about their experiences living with cancer at a young age.

While much of the cancer life is very different than the HPS life, I could identify with much of what they talked about. Having a chronic illness as a 20 to 30, even 40-something is just different. It takes on even more dimensions when it’s something so rare.

I’ve been thinking a lot lately about living with chronic illness. It isn’t that I’ve been more upset than usual, or more depressed than usual – it’s that I’m trying to think of all the things I should be documenting to tell this story that have by now become so routine I don’t even think about them.

Many of you will remember the film crew from Stamford that joined us at conference several years ago. They have also done filming with Ashley and me since then.

I know many of you haven’t heard much about it lately, but that project is still very much active.

They have a cut of the film that will be used for educational purposes in medical schools. Donna and I recently did a conference call with the folks at Stamford and a potential funder to make a full-length documentary focusing on the issues of living with chronic illness, and sort of using HPS as an example of that.

When I started this blog, the intent was to record what it was like to LIVE with HPS as well as the battle to try to find better treatments and someday a cure – something that is so different for an ultra-rare disorder.

As I’ve become more involved, several conflicts of interest have come up. Firstly, I’ve been very careful when blogging about my own family issues and HPS. My brother and I are very close, and he and his wife are incredibly supportive. It hasn’t been so smooth with everyone else though. I might have my feelings about that, but I do want to protect my family. Just because I choose to put everything out there doesn’t mean everyone wants to be that way. Secondly, as I’ve become a leader in the HPS community, sometimes that also is a point of conflict. I sometimes have to draw a fine line between the need to be honest and record the darker side of things, and the need to be a sort of community cheerleader and help to keep everyone from focusing on those dark things that, if gone unchecked, would keep us from moving forward.

Okay, so, all that said – it is different to be diagnosed with something like HPS, and indeed pulmonary fibrosis, at 20-something. When I was first diagnosed, before I knew much about the HPS Network or was so involved, I looked high and low for support groups. I felt so overwhelmed with the sudden idea of what the future was likely to bring, that I was falling into a big depression and I needed an outlet. I remember finding a support group through a local hospital that was for people with lung problems. The trouble was, it met at 10:00 am in the morning across town. Not only could I not get there, but it was in the middle of a work day. I was already missing so much work; I couldn’t take off to go vent to a bunch of strangers.

When I called the lady in charge of the group to ask if she knew of anything else that met in the evenings, her response was that everyone in the group was retired, and there’d been no need to meet during later hours.

Yep, as I’ve trolled around the pulmonary fibrosis world, I’ve learned that indeed while some of us get diagnosed young, the vast majority are older.

I had the same experience after my ostomy surgery when I was 19. I went to a support group for people with ostomies – and I went just once. I was the youngest person there by 50 years.

I’ve gained a lot of wisdom from many of the older people I’ve met along the way. But how do you really talk to some 70-plus year old lady that reminds you of your grandma about your new ostomy, and your concerns about dating, and yes, someday sex? It was just a little too weird for me.

There are so many things that are issues for younger folks like me.

How about just casual dinner conversation? I must confess, my social circle is much smaller now than it was when I was diagnosed. It’s mostly my fault. I suddenly felt like I couldn’t relate to people except in the most superficial ways. I felt fake, or false, or awkward in social situations in ways I never had before.

I remember sitting at a Bible study one evening with a bunch of 20-somethings. It came time for prayer requests. One request had to do with a big test coming up. Another had to do with closing on a first home. Another had to with a romantic situation.

In the beginning you felt like you could ask for prayer – say what was really happening to you. The thing is chronic illness sets in, and in the case of HPS and so many others, it doesn’t go away. People grow weary of hearing your troubles. They don’t understand and you start to come across as a big whiner. So, there I sat, and if I’d asked for what was really going through my mind, I would have said something like:

Please pray that I’m able to get into this experimental trial at the NIH. Please pray for my six friends who are critically ill right now and are very likely to pass soon. Please pray that I can hold it together at work while I have all this on my mind. Please pray I don’t get hit with another bill this month because my finances can’t handle it.

Praying for the finances for a new first home is important, and certainly a big deal in the life of the average 20 to 30 something – but how do you relate when you’re actually more worried about financing a lung transplant someday? It can be very isolating.


Anonymous said...

In the very smallest way, I can relate. I've worn hearing aids since I was four years old. While I was rarely if ever outright teased, other kids my age just didn't understand. Hell, most adults didn't (and many still don't) understand. At the beginning of every school year, the my classmates would ask "What are those things behind your ears?" Then it's "Why do you wear those? What do they do?" If I asked someone to repeat something, they'd often retort "Turn up your batteries," as if batteries were something that could be "turned" up or down.

Yet the one thing I remember as being the most difficult was: "Oh, my grandpa has hearing aids. We tease him about them all the time." Everyone else who had hearing aids was a senior citizen! I was prematurely old people!

Heather Kirkwood said...

I can relate to that on many levels too. I get a lot of crap about my cane, both from the sighted and blind worlds. Sighted people are always making snide comments as if I'm somehow "faking" it, as though vision is an all or nothing thing. Some in the "blind" world feel my vision is "too good" to use a cane. I've always wondered why so many people have a hard time with the fact that I happen to find it useful.