2/21/2014 When You are Better, But Not Entirely Healed Yet - some personal insights from the points of view of both patient and caregiver

It's an interesting thing…

Perceptions, and reactions to one's infirmity, and recovery therefrom.

I know that for some time, the pain I was in was impossible to hide.

In the work environment, there are a few who frown on that. In fact in the world, some people just get very. Very cranky about seeing people who are in pain or have a visible handicap or infirmity in public. I am not sure what they think we are supposed to do - just hide at home, and completely give up the last vestiges of what was are trying to create as a "life"? Just go on disability and get out of their sight, as it is terribly distasteful? I don't know who can live on disability long-term - it is shameful 1- the difficulty in even applying for it, and 2. The reduced amount of money you are forced to try and exist on. It's better than nothing, but hoooo boy did it put me in a hole, even *with* really good medical insurance.

I maintained my professional demeanor here at work as best I could, and I always did my job well.

I will admit that, near the end of the worst part of it, I sat and cried quietly (mostly( at my desk more hours than I care to recount - trying to find a primary care doctor, discovering that I needed surgeries, trying to suppress the intense pain I was in 100 % of the time, or just dreading the next trip to the bathroom or deciding which of me kind-hearted coworkers I was going to bug next to ask to bring me a cup of coffee or fill my water bottle, or warm up my lunch. Most of the time I was pretty stoic, but I know I looked like unholy hell. There is photographic evidence, beyond my memories of it all. My brow was constantly knit, my face had the look of constant tension and even anger.

To some in the workplace, I know it wasn't pleasant. Most were simply concerned for me. A few of the more vain in the office were clearly  not amused. Too Damn Sorry. I hid in my cubicle from judging eyes, and also from pitying ones. Pity is of no use to anyone, Empathy ids kindness. Pity is humiliation. "You poor thing!" I actually heard people say that to me. It may not seem so bad - but from this end of the pipeline, it was cringe-inducing. Especially when you are doing your bloody level best NOT to be a martyr or a victim, all the while confined to leading into any room with a giant contraption of wheels and steel and embarrassment. I did my best to get over that - you just have to do what you have to do, and sometimes you have to pile that thing into the car and go hear your friend's poetry reading and go to the pub afterward and get into a little hilarious, fun trouble when he's wheeling you to the car in the walker, (I don't think it's rated for this use!) and it meets a crack in the sidewalk and tips over backward (ooops.. um, I think…uh…?) - and he heroically saves you from a hard landing, and helps you get up from the ground completely pain free, when almost nothing in your world is pain-free!

Sometimes you have to do that. But I digress. Sort of.

Now that I am getting better and better - it is strange. Good - great!!!

CAREGIVERS - PLEASE TAKE ESPECIALLY CAREFUL NOTE OF THIS SECTION:

Great, but funny. Improvement does not happen overnight, though it happens pretty much every day. One thing more you can do, or do better; a muscles which was too weak and stiff finally lets go and relaxes, and stops hurting as much - and then completely; you can reach something you could not, or move your knee at an angle unavailable before… it is amazing how much "getting better" happens by tiny increments.

And when you reach a certain stage, when you are off cane for a large amount of your day, and can think carefully, and, when you have stretched and warmed up with a few stiff and sore steps and can walk straight with a barely or not visible limp - people think you're all better. And they are enthusiastic and cheer for you and so happy for you - everyone tells you how good and happy and healthy you look - these are all GOOD things! But they are assuming that you are ALL better and not in pain any more. When you are working very hard to walk properly and function well in the world, and establish your New Mindful Normal, it can be a little frustrating, this phase.

It's not that the world has to revolve around me - believe me - I get all the attention I need and then some on the stage (It's not ABOUT the attention, but that's part of the experience). It's just that I don't want to be dismissed, and even more than that - if I am seen walking with my cane again, for WHATEVER reason - perhaps, as was the case last night, I sat on a hard stool for three hours the night before  in rehearsal and I am stiff, or I am very tired or it's the end of the day…  I do NOT welcome people reacting as though I have had some huge setback, or am not doing well, or have given up, or the hip replacement has gone bad.

Two very nice women in my office today were chatting, and I had chosen to walk to the kitchenette for coffee and water without my cane. I could deal with it, and it's a pain trying to carry things with the cane, too.

As I walked by the two chatting women, really focusing on keeping my gait correct and straight - feeling pain in certain areas, but just paying attention to that and making sure I was walking safely while not spilling my full coffee cup and carrying my water bottle in the other hand - they took note, and one said, "HEY!! Oh MY GOD!! Look how well you're getting AROUND!!!" The other said, "YEAH! We just talked about how great she's doing and how cool it is that we can have this kind of medical thing done these days!"

And they were cooing and laughing - it was really sweet - but - almost too much. Ya know? And the thing is, you still want to say - and I did - "I have less and less pain every day, Sometimes I'm still on the cane for balance, and when I get tired and sore… " I feel compelled to make that disclaimer, because I am NOT ALL BETTER.

Why that matters, I don’t exactly know - perhaps because I want to be able to really celebrate the REAL deal, when I am finally pain-free and able to get around as (new, mindfully) normally as  anyone in the room. And I don't want people rushing to make it DONE. I still need the disabled stall so I don't over-do (though I can use the other stall, it's still best not to stress to get up), and the disabled parking spot by the front door at work. When these things are available to me, I still use them - not out of laziness, but necessity and informed caution. When people over-estimate your progress, it feels like a bit of an invalidation. Like you just aren't healing fast enough, or you're faking it or SOME damn thing.

So here's the deal. I tell people I'm doing great, and look forward to when I'm all healed up in somewhere between a month and three months or so… I just do. I don't have to justify a damn thing - and I appreciate that they are impressed with my rapid and thorough healing - the SHOULD be! It's impressive! But no judgment, please. Celebrate the progress, and don't push. I'm not.  I know better.

I think it is - realizing that you DO improve every day, and it has been many days (Six and a half months on the left, almost 12 weeks on the right) of daily improvement - it gives you an idea of the scale of the amount of healing you had to do, 'way back there last spring when you had nothing left in you to finish the run of a professional world-premiere musical, and in that last week, the idea of 9 shows in the next five days made you sit and sob in front of a dear friend… who suggested you use a cane… and when you said, "Yes - very good idea, I'll need to get one somewhere…it'll have to be wooden, since it's a Victorian period show…", he promptly pointed to his right, without even looking - and there, in your umbrella stand with all the prop bamboo canes and parasols and such, was a proper wooden cane… (The Hero, again!)

That hellish week, when every time you had to get up from a chair backstage for an entrance, you had to have a cast or crew member's help to even rise from the chair, and the thought of getting through the next three minutes of walking across the stage, let alone ACTING properly with wonderful seasoned professional actors - when other kind actors took every opportunity to physically support you on stage, or insist on getting your costume for you…

It really REALLY brings it home how on EARTH you could improve every single day, and still not be fully recovered yet. I have my life back!! I am grateful for EVERY SECOND of it all - but it gives me permission to heat apace.

I hope that somehow, this all conveys how it is from inside the head of a person recovering (and recovering very well, with flying colors!) from such a traumatic injury/illness.

Thank you for caring to listen. I hope it will help you as a caregiver to understand where some of the crankiness in your loved one is coming from… and perhaps it will help you, as one ready to undergo this amazing procedure and healing process, when you find yourself getting inexplicably cranky with people who are only trying to encourage you.