I very much realise that there are people living in a far more hellish situation than I am; but right now, today, I am going through my own kind of hell. My body is screaming at me again, but I am using every ounce of mental effort not to question that; to focus on the physical effort for now - persevering, determined to give this my best shot, to see if I can break through this pain barrier and create a return of 'normal' movement patterns. But it is hard. Today, my body is paying for being pushed to its limit at physio yesterday; but I have to keep at it and push it to its limit again today. I genuinely don't know if it is "killing me or... making me stronger" but I have to work at it, give it time and effort before we will know. So it does feel like working through my own, physical, hell - the pain is my hell and if working through it will get rid of it (even improve it slightly), right now, that is my incentive, my reason to keep going.
This time two years ago I met my surgeon, Dr Kibler, and shoulder therapist, Aaron Sciascia in Lexington, Kentucky for the first time. At this appointment I was asked how many doctors I had seen, specifically about my shoulder, prior to seeing Dr K. I counted 15 (not including multiple physiotherapists, nurses and other health professionals). Apparently the average was 4. My high number was partly explained by some duplication because I had initially fallen in the US and then travelled home to Scotland a few weeks later; but mostly it was because the 13th doctor had been the one to diagnose me and refer me to Dr K. The few before him (all in the US - on an intended 6 week visit which turned into a 21 month stay) had set me on the right path, narrowing down specifics with each specialist, and therefore pointing me towards a diagnosis; the few before those had just been downright dismissive (and since the saying goes "if you can't say anything nice, don't say anything at all", I'll try really really hard to stop with "dismissive". There are many other words that come to mind.... They all apply to Dr number 14 as well - he was an, ummmm..... 'blip'.... which is really a nicer way of saying I wish my Dad had punched him. That was me trying to be nice.) Anyway.... Dr K was the first person who TOLD me where my pain was instead of asking me; who TOLD me what made it worse; what made it better. He knew WHERE the pain was and EXACTLY what movements increased my pain; what movements were impossible; and what (slightly) relieved it. He also conducted his entire examination far more thoroughly than any other doctor I had seen, yet with the least torture! He was the first doctor who was not completely puzzled, perplexed, or looked at me as if I were crazy, or perhaps had two heads, or even worse, that I thought I had an invisible second head nobody else could see. After seven months of sheer FRUSTRATION, the relief was overwhelming. I have been in touch with a few other patients too (the wonders of the internet) and each of them describes similar feelings. I have not come across a single person, or page on the internet, saying anything negative about Dr K. I think these are all a true credit to Dr K and his team, and the level of compassion, professionalism and respect they show each and every patient. I think the very fact we drove 650 miles to see - literally - the only doctor in the world who could give me the use of my right arm back, and he firstly thanked us for coming to see him, sums him up perfectly. A true Southern gentleman. Reflecting on all of that makes looking back on that day such a positive memory. It was filled with hope, understanding and promise. It was the most positive thing to have happened since I had fallen, 8 months earlier. Of course, many things have happened since; other issues have come to light and other problems have had to be addressed. It is difficult for me to truly separate these because they are inextricably linked when it comes to my overall health, pain, and physical function. But when I can think about that one day in isolation it was such a positive day: it really was. And even knowing everything I know now - every single piece of information that has challenged me (and my physios and doctors) since the surgery; every single thing that has made me cry with pain, with frustration; everything that has culminated in this big giant "I DON'T KNOW", regarding my life, still doesn't take away ANYTHING from that day. Ultimately without Dr K, without his surgery, and without that day - that week really - I would have no potential for getting my right arm back; I would still be in massive amounts of pain - maybe even worse than I have now (although see the picture below for my true feelings on that one). That appointment DID give me hope; something that was beginning to elude me. In that initial appointment, Dr K asked me to rate me pain on a scale of 1-10. Most people with 'chronic' (technically anything lasting 3 months or longer) HATE this question.
For me, it's always been difficult to understand the question should be subjective - as people keep explaining to me. It isn't necessarily the worst pain in the world, it is how you feel ON THAT DAY, or sometimes more generally with THAT injury. It always feels like an exaggeration to say anything above an 8, but it genuinely impacts my ability to function - in every way; it makes me cry - for no other reason than it hurts. Sometimes, when I have severe pain and find myself on my knees, clutching at my arm and realise my cheeks are burning and wet with tears, I ask myself if I am crying because I am frustrated, or even having a bad day and feeling a bit sorry for myself (which, yes, happens sometimes); but when I am attacked with the overwhelming, bring-me-to-my-knees type of pain, the only thought in my head is OUCH. I am not thinking of anything else (it must be the only time that ever happens) but how painful it is. I am still quite sure there are other pains in the world that are worse than mine; but having 'learned' how pain is supposed to be assessed, those 'attacks' make my pain - in that moment, at its worst - a 10. I have found this to be the most useful pain assessment chart (I think clicking should make it larger, otherwise the original image can be found at the link on the caption):
I was always inclined to imagine the worst pain I possibly could (as per previous blogs) and then try to fit my pain in there somewhere. This chart's descriptions - for example 'bedrest required' helped me to fit it into a more subjective context. So when Dr K asked me how I would rate my pain, my exact words were:
"I don't want to sound like a drama queen, but sometimes it really is a 10"
He understood. And he said the best thing I could possibly have heard, and never expected. He told me I was "tough". I told him (crying - really tough!) that I used to think I was tough before this happened. Looking back, that changed view of myself was down to damaging appointments with other medical professionals. Ones who told me I wasn't trying; I was too focused on my pain (gee, please let me rip your muscles off your scapula and see how easy it is to think about anything else. Seriously, please.); my questions were scorned, ridiculed, cut off; I was told so many things I knew to be untrue but felt I was not allowed to question them - and on the odd occasion I managed to summon up the courage to ask the question bouncing around my head, I was yet again dismissed; spoken to like an idiot - one medical professional even visibly rolled her eyes while answering one of my questions. (I would add, there were times my mum - herself a medical professional - and/ or my sister were in appointments with me; this made NO difference; they were treated exactly as I was.) Looking back on that always makes me think of this quote from Matilda - a terrible concept to associate with any kind of 'care', but nonetheless, exactly how I felt:
I am delighted to say there was not a single moment I spent in Kentucky, or Pennsylvania, receiving treatment for my shoulder that brought any of these feelings to mind. And I am currently very optimistic that I have left them entirely in the past. Without revealing any of that, although clearly exhibiting my emotions, Dr K told me it didn't matter what anyone else had told me, I was TOUGH. (Apparently it's not an unusual concept among some doctors to think 'I don't know what this is; therefore my patient is crazy/ a hypochondriac/ attention seeking/ weak female who has no idea what pain is.' Apparently this was not the first time they had encountered this; nor did it surprise them.) Dr K told me that they didn't know why yet (I was only surgery number ~170), but that this was the worst injury he encountered in his orthopaedic clinic - in terms of severe pain, severe disability and lack of function. It was a complete validation of everything for me. A reassurance that I was not going crazy - and I don't even think I realised how much I needed that until I got it. And then he said this whole process was going to be tough, and I would need to continue to be tough. That didn't seem like a particularly difficult instruction....
Sometimes we are SO very lucky that we cannot see what lies ahead. As the days, weeks and months followed on from there, "tough" became something else entirely.
And now, looking back over two years, I still remember ever single detail of that day; of that appointment; of how I felt. I remember the relief - the expectation that I would be 'fixed'; that I had my answer. Of course, life is never really that simple (especially not mine, it seems) and this picture seems to say it better than I ever could:
And so the mystery solving continued, as my blog has detailed over the past two years. But looking back on February 27th 2012 and my first meeting with Dr Kibler and with Aaron - despite EVERYTHING that has happened since then - I am still very grateful for that day; for the wonderful people they are and for the major part they played - and continue to play - in my (ongoing) journey.
As I write this two years later, I wonder how I would have coped if I had known the long and winding path my recovery would take. I cannot lie and say it has been easy - there is no part of it that has been easy: physically, emotionally, or psychologically. Every single part of it has been a challenge, but I am still here, battling on, and determined to improve as much as I possibly can. Right now, I don't know how much that is - nobody knows what to expect. Perhaps that is the most difficult: the inability to make plans, to imagine what lies ahead because I genuinely don't know. If nothing else, this experience has taught me to have patience (I'm not saying I've been good at it....); it has made me realise many people rush from one thing to the next that they must miss so many things in between. Out of everything, I hope these are things that will stay with me. I hope I will remember there is much more to life than rushing from one place to another - there is always something to appreciate; and there is always time to appreciate it.
I've always loved this song for its phenomenal feel-good, tough girl, motivational lyrics and beat. It's just the kind of song that should be offended by being left out, so here it is! This song makes me think of my fight with my body. It's a really difficult thing to realise that your body is not infallible; that it can let you down with such emphatic defiance. I know lots of people who have coped with that in different ways, each has gone through (and is going through) his/her "fight" to get back to that thing we call normal (does it exist, anyway?!) The reason I called my blog "out of the lyme light" was, obviously so the world "lyme" was in it, but because I really did feel, when I started writing and reflecting, that I was emerging as a different person from the person who began the journey. I feel the same about dealing with all my shoulder issues and I think this song captures that idea - that when something bad happens, we can choose how we deal with it; and we can choose to let it break us; or we can choose to fight, emerging from the battle... or maybe the war... a different person - someone who has proven to themselves what they are capable of; learning new things about themselves; and using their newly found skills to help other people too. Not despite it all, but because of it all.
"Fighter"
Christina Aguilera
[Spoken:]
After all that you put me through,
You think I'd despise you,
But in the end I wanna thank you,
'Cause you've made me that much stronger
* * * * * * *
But uh uh, oh no, you're wrong
'Cause if it wasn't for all that you tried to
do, I wouldn't know
Just how capable I am to pull through
So I wanna say thank you
'Cause it
[Chorus:]
Makes me that much stronger
Makes me work a little bit harder
It makes me that much wiser
So thanks for making me a fighter
Made me learn a little bit faster
Made my skin a little bit thicker
Makes me that much smarter
So thanks for making me a fighter
* * * * * * *
I am a fighter and I
I ain't gonna stop
There is no turning back
I've had enough
[Chorus]
You thought I would forget
But I remembered
'Cause I remembered
I remembered
You thought I would forget
I remembered
'Cause I remembered
I remembered
[Chorus]
(As usual, I don't own any music/ videos etc. All linked to Youtube and artists accredited)
