May 22: Illness Purgatory

There is a place that no one talks about, many don’t even know of its existence. It’s a complex place with no rules, very individualized, but with many commonalities amongst the people who are there. It is a place that millions of people have visited, and some people reside there permanently. It is not an uncommon place for older people to visit, although it is younger people who seem to be caught in it for longer periods of time, some never leaving. It is not a place where anyone would chose to go, but can be an advancement of sorts.

You have never heard of this place for a very good reason: I created the phrase myself, feeling there needed to be an acknowledgement of the stage between ‘sick/dying’ and ‘healed’. And while it can apply to different phases or times in sickness, I’m using it now specifically for the recovery phase. And this has more to do with after a surgery or procedure rather than an on-going medical issue, which have separate debilitating problems in their own rights.

Recovering from a serious or sudden illness can be surprisingly tricky. You aren’t really sick any more, you aren’t dealing with the hell of dying, the horror of the surgery or treatment that stops you from dying. But you aren’t back to being fully recovered, either. You aren’t happy, the way everyone says you should be. You aren’t singing and dancing and grateful to be alive. You’re someplace in between hell and happy—you’re in purgatory; that mystical, foggy, unknown place in between what are supposedly two definite realms. Illness Purgatory—I’ve upgraded it to worthy of capitalization as a specific locale.

It’s a psychological place, a mindset, a place no one told you about. It’s difficult to explain to your friends and family, much less to your doctors. “You’re fine!” they have announced. Your family is thrilled, grateful to have you here with them instead of your being dead. And you are supposed to be as ecstatic as they are—you’re alive! You have a new lease on life! You just got an extension! You should be happy and wonderful and terrific!

People think as soon as you are ‘fixed’ that you immediately return to ‘normal’, with the addition of extreme gratefulness for having been spared. The sun should be brighter, the grass greener, the flowers prettier, your mood euphoric. But often that isn’t the case, and it leaves others frustrated and even a little angry at you. What’s wrong with you? Why aren’t you happier? You don’t have anything to worry about now—you’re all better. As a matter of fact, you’re better than before, because the disease inside of you has been cured.

If your illness was such that you are improved, people’s reactions are predictable: you’re fine, be happy and get on with your life. Nothing bad happened to you, just take the pills that will keep you healthy and everything is fine. Logically, this is true.

There is an expectation of your mood acting like a faucet: the terror you felt at being ill being turned off, and then happy being turned on because you are healed. Instantly going from one to the other, off to on. There is no allowance for an adjustment phase, no understanding that you are struggling to go from hell to happy, but you haven’t made it there yet. You tell yourself that you shouldn’t be scared or depressed. You know what they are saying is true—nothing happened, everything is fine. You should be happy, relaxed, grateful for your existence. And yet, you aren’t. Why not?

Because you could have died. Because there is the sudden realization that there was something inside your body trying to kill you that you didn’t even know about. Because you are wondering how to recognize it next time. Because every little ache, every little pain, every twitch now has new significance. No longer do you dismiss these things, instead agonizing over what each ache, pain or twitch means. Is it your illness coming back? Does it mean something? Are you going downhill again? Or is it something else, a different something that is again trying to kill you? You keep coming back to the recognition that you could have died, and not having done so isn’t necessarily as reassuring as one could wish. Illness Purgatory.

So, how do you get released from here? How do you get out of this murky unpleasant, ill-defined place? Catholic purgatory, as I understand it, is overcome by prayers, lighting candles and the grace of God. All of those things may be helpful in this purgatory as well, but no guarantee. A lot of it is just time. Time passing really is the best healer. Medication can definitely help, although most think of that as not being necessary. Everyone wants to believe that they will be able to cope with things, will adjust to it on their own. But there are real chemical changes in the brain when you have suffered a trauma, and admitting that can be the start of healing psychologically. Accept as well that sometimes a little chemical correction can speed the process along.

Try doing the things you enjoyed and prove to yourself that death doesn’t ensue. Watch other people with similar situations and how they live their lives. Gradually make adjustments that allow you to slowly get back to normal, but understand that there may be a 'new normal' to accommodate the results of your illness. Know that there will be a time when you can look back on this phase of your life and say “Boy, that sucked. I’m so glad it’s over!” Unfortunately, there isn’t a specific time or date when that occurs for everyone. It would be nice if there were, if you could mark a date on your calendar and say, “That’s when everything will be OK again.”

Remember one of my oft repeated phrases: It's all relative. When you come back from the depths, then an improvement is relative to how you felt at your worst, not what you were in the 'before sick' phase of your life. It is very common to lose some of the physical, if not mental, capabilities that you once enjoyed and took for granted. And the word "OK" certainly falls into the category of relativity--and not in the way of Einstein.

But, honestly, I don’t think that you ever totally get back to the ‘before’, you can never resume the innocence you once enjoyed before death was so imminent. While on the surface life may return to normal, there will always be a part of you that is touched by the experience. In the long run you may appreciate what you have more, stop putting off goals or plans, express your love for others more frequently. But things will never be exactly the same again. Once you have encountered death you are changed forever, as it leaves its mark. And this is what those who haven’t experienced it can never fully understand.

Thanks for checking in, Laurie

May 11: An EMS story, on an anniversary

Anyone who has spent time in emergency services will tell you that some things stick with you more than others. Sometimes it's obvious why, sometimes not so much. Over the years you become hardened to the 'standard' things--the blood, guts and gore that are a given in that line of work. It has to be something really remarkable to make an impression on you after a while, and even more so for something to be remembered after many years. It's been a surprise to me how few of the big, dramatic calls I remember anymore. What sticks with me out of the thousands of responses I had over a 25 year career are the emotions, mine as well as others.

The emotions that you encounter in EMS are different than anywhere else. Because they are so powerful: raw, unfiltered, primal. From the patient: fear, pain, numbness, anger. From the family: concern, terror, tenderness, anger at you or the patient. From bystanders: helpfulness, morbid curiosity, drunkenness. And you, the 'ambulance person', are not allowed to show any emotion. Not shock, not disgust, not anger, not sorrow. And, when you're one of only a tiny number of female paramedics in the county, certainly not weakness.

Deneen was there, on one of the crews that responded to help. Kevan may remember: he came to the ER on another call and supported me--literally--in the aftermath.

It was May 11, 1992. And this year the date falls on a Monday, same as that year. And every year I think of this call, pull out the run sheet. I debriefed myself by writing several pages about what happened, my thoughts, emotions and prayers. The basics are this: a 5 year old boy, playing 'chicken' with the garage door (this was the time of Indiana Jones films....). Somehow, got his head caught under the heavy garage door, which didn't go up (despite it doing so every time when tested afterwards). And he suffocated, under that door, trapped, helpless. His mother was yards away, washing dishes in the house. A neighbor saw him, pulled him out. Called 911.

The entire call was, quite honestly, perfectly executed. House down the street from the police station at change of shift, so all the cops immediately responded. The Fire Chief was in the area, a rescue crew instantly materialized. A couple street responders from the Squad as well as a couple of our transport crews. I arrived six minutes after dispatch. Intubated, longboarded, packaged and enroute in nine minutes. The most incredible police escort--the entire lower end of the county was involved: police blockades at every intersection, six police cars around me with the Fire Chief in his vehicle with the mother; Eric didn't touch the brakes the eight minutes to the hospital. Only 23 minutes for the entire call, into a trauma team with a pediatrician. I'd gotten a rhythm back enroute, they got pulses, BP and respirations back in the ER. Flew him to CHOP. It was the most incredible response and teamwork you could ever have hoped for. It was the call that went perfectly.

Except the patient died.

He was brain dead. They took him off life support in the early hours of the morning. It was the days before I went back to school, the days of 24 hour shifts. CHOP called me at 1 am with the update, the date of death was officially May 12th. But, in my mind, it was the 11th.

This child's death started a week of hell for me: the first of six critical pediatric calls where I was the lone paramedic over the next seven days. Maybe all the expended emotion on this one enabled me to handle the next four really sick kids even before the three year old cardiac arrest that following Sunday, by which point I was pretty numb. And yet this is the one that has stuck in my mind for the last 17 years. He wasn't the only child I couldn't save, not the only call that went well, not the only parents who I watched deal with the horror of a child's trauma. Not even the only call where I documented my feelings. It didn't change anything for me, cause any real impact in my life. Why this one?

This one was shared with the greatest number of people. This one my writing was the most revealing. This one was the example that no matter how well things can go the patient can and will still die. I don't really know why. But, for whatever reason, this is the one which sticks out, the one I remember the most about. The one which, for just this one day, year after year, I still remember and grieve.

His parents surely have no idea that someone who had contact with their son for only a few minutes still thinks about him. I never tried to find where he was buried, never wanted to intrude or become that involved. But every year I send out a prayer for his parents, hope that they have some peace, let them know--somehow--that someone else remembers the tragedy of this day.

David, you are not forgotten.

Laurie

May 7: updates: foot, Martha and lots of medical stuff

Just a quick note, overdue to go to bed and lots to accomplish over the next three days.

Thank you to the three who posted. I didn't know that Kary was still checking in, so that's nice to know. Please, others, speak up! Kevan, I don't know who that person was that you mentioned.

I just went back and read over my earliest postings, which were August 2006, and then through the next few months. Man, did I go easy on you guys!! Brenda 'didn't want to worry people' by posting the really bad stuff, so there was a very watered-down version related of what was truly going on in the hospital. And there wasn't anything leading up to it, which I had confused with what lead up to the July 2007 surgery.

Saw ortho about the foot: healing, very slowly. It's coming up on eleven weeks now. Still painful every day, although it is improving. It's flattering the number of people who think I look fit and athletic enough to assume that it was injured while I was skiing. That's the overwhelming guess from patients. My M.A. at work, Natalie, has been coming up with more creative excuses: water skiing, ballroom dancing, sky diving, para sailing. People are so disappointed when they hear it was something as plebeian as falling on the basement stairs.

Still waiting to hear what decision was made about Martha and chemo. The choices were between a 'general cancer' regimen and one more tailored to lung cancer. But the problem with the more tailored one was that it required more of a work-up and therefore a longer wait until treatment started, so they were leaning towards the 'general' regimen. The surgery will depend on response to chemo, after 6 or 12 weeks.

The last couple "Gray's Anatomy" shows have been somewhat reminiscent for me as Izzy deals with dying. It's reminding me of a lot of emotions and feelings--they are doing a good job. And I hope that you all watched Michael Fox's special after that. Boy, he has an incredible attitude. Of course it probably helps that he doesn't have to work for a living and can spend time doing things that are very upbeat. I feel better when I meditate, but only get to do so a couple times a week with working and trying to care for the house, errands, etc. And I would refer to my outlook as realistic and pragmatic with occasional forays into pessimistic or optimistic depending on the situation. With a strong dose of black humor as frequently as possible!

The chest still hurts daily. Probably not helped by the use of the cane. I still sleep with a wedge because it's uncomfortable to lie too flat. But I can push up with much less pain than before. And last weekend while shopping I actually lifted a grocery bag up and into the cart with my right arm--very exciting! It's still tiring to wash my hair or do anything with my arms raised. I still push in on my chest when I laugh, that little bit of support seems to help. And sneezing is still oddly painful, worse than coughing because of the suddenness of the chest movement. And the knuckle on my right hand that got knocked and then bled into the capsule is still discolored. But the laceration across the two lower knuckles healed perfectly.

My INR (bleeding time on the coumadin) is still wacky. The vitamin K they used to reverse the critically high number should be out of my system by now. I sometimes can't get enough blood out of my fingers--the home machine needs more blood than the ones checking for blood sugar do--so sometimes I use my toes. They seem to bleed much better, but it can be difficult getting them to stop. Picture trying to hold pressure on the side of your third toe while elevating at the same time. It's an interesting challenge and probably a good thing that there is no one around with a camera to document who strange I look!

I got more blood work done than usual this week at the lab, and included a magnesium level. It was a little low, which explains the extra beats I've been feeling. Probably a little more v tach. Tonight I ate some of the nuts and seeds tonight that are high in magnesium, so it should improve.

OK, gotta get to bed so that great things can be accomplished this weekend. I'm working up another philosophical posting. Thanks for checking in, Laurie