Wednesday, May 27, 2009

A Better Place

This past weekend, I opened up my office window and let the warm air fill the stuffy room. It was a gorgeous day where the sun was high and warm but the breeze kept the heat from being oppressive. Later, when we took a break to walk the dogs around a nearby pond and I blended in with the cyclists and joggers and hikers, I even felt healthy.

(Okay, so maybe I coughed up half a lung when we got home, but productive coughs are a good thing in my world.)

More than that, I felt so far removed from the long, hard winter (well, fall, winter, and most of spring) I’d left behind me. In my consciousness those months were wrapped together underneath a disorienting haze, in sharp contrast to the bright sunlight, blue sky, and green grass before me. Nothing about them was distinguishable, and I preferred the abstraction of it. It proved to me there was enough distance to solidify the change I felt: the change in seasons, the change in infection level, the change in medication protocol that, while challenging, is definitely worth it.

This morning I awoke to chilly temperatures, a gray sky, and intermittent rain. Not a big deal, and certainly conducive to working through a heap of writing and editing.

But for one brief moment, as I kicked water off my sneakers and unzipped my sweatshirt, I suddenly had a very vivid image of the winter. One specific day in winter, one that stood out again in my mind just as definitively as the bright sunshine that lit up my office just days before, and one that is emblematic of the whole seven month period:

It was a Thursday. I remember watching the snowfall total in the morning and praying, praying classes would be cancelled because I felt terrible but I’d already cancelled them the day before due to illness. I knew I couldn’t scrape by managing them online again. My peak flow readings were so far into the red zone I wouldn’t even tell my physical therapist what they were (but they’d been like that for days so I’d adjusted to it.)

As the snow gave way to icy, freezing rain that turned the roads from slick to downright treacherous, I knew using our tiny little car wasn’t an option. The walk to the subway station is normally very short, but between the snow, the ice, the heavy bag, and the lack of lung capacity I had from the acute infection, it took me 25 minutes. Getting through class took every remaining ounce of energy (and oxygen, apparently) and what I remember most from when I exited the building was this:

I was stuck. It was now nighttime, and there was no way I could get to the (nearby) subway stop and get home. Not with this bag, this infection, these lungs, this tired body, and not in this frigid slushy mix.

(And my stupid galoshes were leaky. Sure the pattern ones look all cute, but they can’t hack it in New England.)

I needed my nebulizer, I needed air, I needed my briefcase to not weigh so much, and I really needed it to not be snowing/sleeting/raining/icing. I probably needed IV antibiotics too but that particular conversation would happen a few weeks later.

Or, I needed my husband to come and get me, snaking his way through city traffic to take my bag and my hand and somehow get me home.

And of course he did, and of course we made it home, and of course I’d been in situations far more serious than this. But for some reason that night, the commute, the cold, wet feet, the bloody cough, the absurdly heavy bag, the rawness—they all conspired to wear me down in every way.

Maybe it was just the chill in the air today that made me remember how raw I felt that night, or maybe it was the wet feet. Whatever triggered the memory, it was brief and fairly inconsequential, filed away for a blog post later today but otherwise buried underneath morning headlines, client specifications, and e-mails.

So why go through the process of describing an event that ultimately has little impact on me now? (Other than to flex my descriptive writing muscles after hours of more technical writing and research, that is.)

For a project on gender I’m researching the relationship between chronic illness and PTSD. At first, I was looking at the potential emerging link between PTSD in soldiers who have seen combat and the development of chronic illness later in life. But as I dug deeper I found another wrinkle, one that hadn’t even crossed my mind: formerly healthy people who developed PTSD as a result of sudden, life changing (and often excruciating and traumatic) illness. For patients like this who improve and then later relapse, even if it is not as severe a relapse as the initial event, the worsening symptoms can serve as sort of a trigger that brings them back to the horrible moment where everything changed radically, or back to moments of unimaginable physical pain, etc.

(I’m summing a lot of this up and probably not eloquently but hopefully it makes sense.)

It wasn’t a phenomenon I’d heard of before. And clearly my little example of wet feet making me think of a nasty infection and a nasty storm is just that: a little example of the power of memory and of certain details to bring us back to a different place. I’m lucky the place I went to wasn’t bad, just a blip in a crummy winter, something I could use as stand-in for an experience that is not mine. I'm lucky to look back and say,"I'm in a better place."

If any of you out there do have personal experience with this, though, I’d love to hear your insights…

10 comments:

EJ said...

Getting diagnosed with MS a few years ago, out of the blue, kicked me into a year of anxiety like I'd never experienced before. I worked with a great therapist to get it under control, but without quick treatment, I'm pretty sure it would have gotten more serious.

I still have recurring anxiety over what else can go wrong that I might be missing. It's just not as big a leap as it would have been pre-MS.

britta said...

Okay, this is sad, but I felt like I had to share it.

The memory is about my best friend Dan who I just lost to a still unknown tragedy. He had diabetes and helped me so much through my chronic illnesses. We called each other -ics, because of diabetic and arthritic. Now being diagnosed with Chronic Lyme Disease, I am having a TERRIBLE time finding treatment, and without him here, I have a LOT less motivation to even get healthier...

And like your title is, he is in "a better place"...but I wish this place wasn't so hard.

Maureen Hayes said...

I related to your scenario more than I like to admit. Recently I have been battling with my insurance company over coverage of my pain medication. Because of the medication not being covered, my pain management doctor had to try other meds to help control my chronic pain. What resulted was about 4 months of terrible pain, withdrawal during changes in meds, and a lot of "flashbacks" to my life before I got to a good pain management doctor.

Life BEFORE was terrifying and involved a lot of hospitalizations for my chronic pain. It finally necessitated a move from one state to another to find a competent doctor to treat me. Then it took months to find the right medication and dose to help me but allow me to function as fully as possible. As you can imagine, this was a tremendously upsetting ordeal. I thought I had put it behind me. Then the trouble began again and the old fears crept in. . would things spiral out of control as they had before? Would my doctor ever win the battle with the insurance company and get me back on the medication that helps me? I found my confidence shaken and myself really scared of going backwards to place I never wanted to visit again.

It is one of the most un-talked about parts of chronic illness. Thanks for bringing it into the light. Perhaps others will see this this happens to all of us to some degree. IT may not be as severe as PTSD, but it certainly can shake you!

Kairol Rosenthal said...

I blog a lot about pstd as it relates to cancer (a new post about it on my blog just this week!) There have been studies about ptsd in survivors of childhood cancer, but not as much info about how it manifests in those of us who are diagnosed as young adults.

In my book on young adult cancer, I write about my battle with anxiety, my shame around it, and ultimately how I coped with the nasty demons of panic attacks and claustrophobia.

Thanks for your research on this topic. It is much needed!

Kairol
http://everythingchangesbook.com/

Health Pain said...

Chronic pain is very severe and this affects people's life, long known to people who suffered from a strange disease, were strong back pains, which were intense and not let them work, as was what they said were the doctor and he prescribed oxycodone for pain, but knew it was a very powerful medicine, and moreover, anxiolytics, and worry that they were doing things that previously did not like eating too much, smoking, etc, and read in findrxonline that this drug is well and that we must be very careful with their use, and everything must be under medical prescription.

Anonymous said...

i actually participated in a ptsd outpatient program at the psychiatric institute of washington d.c. to deal with medical trauma. the program wasn't designed with this specific cause of ptsd, and treatment differs due in a large part to the rate of reoccurrence (unlike war or an abusive situation, most of us will not leave or escape our illnesses), but i found it to be incredibly effective for how i manage my thoughts and feelings in relation to my body. i have three friends who also went through this program to help navigate their (medically related) ptsd and all of us seemed to benefit (we were there at different times). here's the website:
http://www.psychinstitute.com/
best wishes.

Pain chronic said...

Chronic pain is very severe and this affects people's life, long known to people who suffered from a strange disease, were strong back pains, which were intense and not let them work, as was what they said were the doctor and he prescribed oxycodone for pain, but knew it was a very powerful medicine, and moreover, anxiolytics, and worry that they were doing things that previously did not like eating too much, smoking, etc, and read in findrxonline that this drug is well and that we must be very careful with their use, and everything must be under medical prescription.

Anonymous said...

I had severe endometriosis since age 12...and the trauma of bleeding uncontrollably, having people around you constantly deny your pain (including doctors), and always being afraid of passing out from uncontrollable pain was quite traumatic. Not to mention, multiple surgeries....and recurrences. i think the ptsd is particularly an issue with some of these invisible chronic illnesses, where you have to go throug the trauma of the pain, and the trauma of not being able to get support b/c noone believes you, or doesn't think your disease is as important as others.

Johanna said...

HI I just read some of your blog would have to agree with you about the link between Chronic illnesses & PTSD.
I am a first year student studying Psychology & i have been trying to research this topic but have found little information. Could you please share any research you have done of found? It would be a great help.
The reason i am looking at this topic is that i suffer from multiple chronic illnesses and had multiple surgery's and long hospital stays. The experiences of the constant pain, the hospital treatment, the surgery's and the uncertainty of my future have all had major lasting effects on me.
Love the blog and hope today is a good one for you.

Dianna said...

I'm a "well spouse" of a man with a recurrent brain tumor and the horrendous rollercoaster we've been on over the past decade has taken it's toll on us both. I find that I startle easily and have outbursts of rage that I would NEVER have even conceived of as being something I might do. I have wondered about mild PTSD and I have had friends, suggest that they think I might have it, as well.

Chronic/recurrent illness can be VERY traumatic, so it seems a valid circumstance under which PTSD could develop.

 
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