Tip #62 Wise Words Wednesday; A Shift in Focus

     I believe that Illness is a family sport – it isn’t only difficult for the one physically recovering, but for caregivers and family alike.  It can be physically and emotionally exhausting for all, and a time of heartache. But I also think it can be (I didn’t say is always) a privilege to be in such a place in life. Huh? Well, if you actually take a look around you, I hope that you can see extraordinary people who love you and that you love, and/or people that are supportive and that you support, and/or people you encourage and are encouraged by you.

     Sometime’s it is easier to see and/or do these things than others, but I hope that you keep looking always. For me, well, I see it a lot – in friends and family and in people that I barely know, too – but especially in God. It is both comforting and humbling.

     The two quotes of this day? The first is a great reminder that changing focus is a good thing…

Worry is like a rocking chair - - it gives you something to do but doesn’t get you anywhere.”

-Spurgeon

And the second? Well, I think that one’s self-explanatory. Hard to go wrong with that!

“Therefore encourage one another and build each other up.”

-Thessalonians 5:11

Happy Shifting!

Tip #27 Wise Words Wednesday; As Helen Keller Sees It

     Welcome to Wise Words Wednesday! 
     The other day I wrote a post entitled "Your Inukshuk," and encouraged you to find Inukshuks that bring you hope, give you inspiration, and/or make you feel like you are standing in solidarity with another. As the traditional meaning of an Inukshuk is "we were here," or, "we were here and you will find food/shelter, etc. in this direction," my hope is that your Inukshuks will help point the way for you in your recovery journey. In addition I hope that as you are able to, that you can do the same for someone else - even if you don't feel like you can be a whole Inukshuk, but a tiny part of one.
     Since that post, I haven't been able to stop thinking about all of the people whose words have inspired me over the years; people I (often) don't actually know, but who have changed my life in immeasurable ways. I am hoping that you feel the same, especially in this recovery journey now whether you are the one recovering, the caregiver, or both. So, with that in mind, I have decided that we need a new, regularly posted category on this blog that will feature what are (hopefully!) wise words. And, I am asking for your help (if you are willing and able) with this project, please. How?
     Well, for starters, I will endeavor to provide a quote each Wednesday. If you would like to share words, quotes, or phrases that are - or have been - significant to you in this process, then please write them in the comments section of Wednesday's posts. I will copy those quotes and include them in the body of the following Wednesday's post. I would love to see that happen if you were inclined to share!
     Okay, so you're probably saying lets get on with it already for this week (lol)!! Here we go; one of my favourite quotes of all time - from one truly amazing woman.

Although the world is full of suffering, 

it is full also of the overcoming of it. 

Helen Keller, Optimism, 1903

Happy Overcoming!

Tip #101 Journal Jotting; Recording Like a Rockstar?

     Have you ever wanted to be a rock star? Ever sung into a hairbrush or donned a faux-hawk and leather jacket to play some air guitar? I guess in this day and age it's more appropriate to ask if you've ever dreamed of being a rock star after you play guitar hero or Wii Rockband?! Well, if you have ever considered being a rock star, you are not alone. And if you haven't - well, why not?
     Okay, well, maybe the following suggestion won't get you any closer to being a rock star than you already are, but you never know... it might come in handy someday:)  What am I talking about? I'm talking about a digital voice recorder. And, while at some point you could use it to record your rock star moments, there is a great alternative during the recovery process. Consider...
  
Caregivers

• Are you caring for an individual who doesn't want you to be in the same room with them and their physicians or other medical team members? 
• Are you unable to accompany your loved one to an important medical appointment because of work or other commitments?
• Do you find it difficult to remember all that was said by the Doctor about your loved one - especially if the info had technical information you are not familiar with?
• Do you find that no matter what you do, you cannot seem to be with your loved one at the same time they physician comes while your loved one is in hospital (as you don't usually have any idea when the physicians will come, or how many of them will come throughout the course of the day)? 

     If you say yes to any of these questions, then perhaps you and your loved one should consider using a digital recorder. In case of the first question above, your loved one may consent to record the appointment simply for their own peace of mind, and not consent to letting you hear the conversation, and it's important to respect that. Still, the recording can be helpful even if they are not prepared to share the information with you - as they can play it back to themselves, and get any important information they may have missed (appointments can be overwhelming), and/or to choose the information they would like to share with you, without leaving you extremely confused (well, in some cases less confused!) :)!


Those of you recovering

• Do you ever leave a medical appointment feeling unsure of what just happened because a huge amount of information was shared with you in a very short period of time?
• Do you ever feel overwhelmed after a medical appointment because the information was devastating, and after hearing a word like "Cancer" (or any other scary words) you weren't able to focus on what was being said to you?
• Do you find it difficult to pay attention to what is being said while writing the info down at the same time?
• Do you find it frustrating to answer questions posed by your loved ones and/or caregivers about what happened during a medical appointment?
• Do you think you would find it easier to say a few words into a small recorder than to write memos and such down (phone messages, items for the grocery list, a reminder of something you need to do....)?

     If you said yes to any of the above questions then again, I suggest you consider using a digital voice recorder. If it gives you peace of mind, then why not do it? Well, one reason is the cost. I get that. If you have a cell phone/smart phone, or some other device that allows you to record everything you need to -then great. The voice recording function exists on some phones - but the length of the recording might not be all you need - perhaps consider checking your manual. If you would like to buy one, I went to "ehow" and it had this link on how to find the right recorder. You can often find them at Staples or other such office supplies stores for anywhere between $50 and $300 dollars. No longer are voice recorders big, cumbersome objects requiring cassette tapes and such. No, now they are digital, sleek, and very easy to use. Kinda' cool really...


****Please note:
Re Vulnerability  
I debated about whether or not to include this, but I think I will, though in brief. Do you ever feel more vulnerable because of your current situation? You can be in a more vulnerable spot, but you can also feel more vulnerable because of the trauma that has happened, or the difference you are currently experiencing in terms of physical strength. Either way, if you are feeling vulnerable would it make you feel less vulnerable to know that your conversations with specific people in your care are being recorded? If so, then it may be an especially good suggestion to record these appointments.
     But, there might be even better suggestions yet - like seeking professional help (social worker, police, etc.), and/or seeking care from an alternate individual. Whatever the decision, may I suggest that from here-on-in you make sure that you are never, ever alone with that individual. I am not a social worker, nor am I a criminalist, so I cannot advise you on how to proceed except to say that I think finding someone qualified who can advise you how to proceed is a great idea.
Re Permissions
Please make sure that you ask the people you are recording (medical member and your loved one/caregiver) permission to make the recording! If you are afraid you won't have the opportunity to ask  the medical professional, or your loved one is not able to communicate that to the professional (or is nervous about doing so, or worried about offending their practitioner), you could have a short note accompanying the recorder that briefly (very briefly) specifies why you would like the recording. 
  
     Wow. Who knew there could be so much to say about digital voice recorders? Since many of the reasons for having such a device are to relieve (or at least minimize) stressors like a lack of information, misinformation, miscommunication, and general confusion, I think it is worth considering, if it is something you can afford. Well, for that matter, anything that can lessen stressors during the recovery process is worth considering as far as I'm concerned - as long as it does not require loads of energy to implement. And who knows? Maybe this will mean that you will have enough pep in your step to start practicing for that new career as a rock star!!! No?

Happy rockin' out!!

Tip #274 Bibs and Bobs; Don't Drink and Write?

     I know - it's a bizarre title for a post. Just to be clear, there is no drinking going on here, nor drinking and writing! But, I can see how you might have wondered if I was, had you read my last post (about your Inukshuk). I started to write the post last night, and I wanted to get it up and running before I forgot the points I wanted to make. Towards the end of the post I got so tired that I kept waking up to find the computer on my lap with the post box open. I'd reread the paragraph, type a few words and the next thing I knew - I was once again waking up with the post box open in front of me!
     Imagine my surprise this morning when I woke up and couldn't remember closing the computer or whether or not I had posted the post. Guess what? Somewhere in my dreamy-land brain I must have decided the post was ready to go. In my much more awake state this morning I looked at it and decided "ready" wasn't a word I could use to describe the post.
     What did I do then? I laughed. After the laughing settled, I sat down and rewrote the part I had written while in la-la land. So, sorry to those of you who may have been confused... apparently I was confused too!
     Not that everything has to be a lesson, but if there was one to learn here, I'd say that it was to "sleep responsibly"in order to prevent recurrences of the "drinking and writing" style of posting, or any equivalent thereof in life. But how does one sleep responsibly? You do whatever it takes to get the sleep you desperately need to heal and to cope. While those "whatever it takes" items are different for everyone, there are always commonalities such as carving out enough (or any) self-care time in the day, rearranging the timing of some medications (but working with the pharmacist or physician to do so), working through anxiety, stress, and so many other items.
     So, how about we make a deal? You ask (and answer) yourself about what you need to do in order to "sleep responsibly" and I'll ask myself. Then, how about we each work on even just one item from our respective lists that would help us meet that goal. In the mean time, please laugh at me for my silliness, and if you don't already - practice laughing at yourself in this kind of situation, too.  It really does feel so much better to laugh than to feel embarrassed, to regroup rather than avoid, and to work towards good goals rather than sticking our heads in the sand.
     With that I'll say goodnight, and which you a fantastic night of sleeping, and a wonderful happy and sunshiny-day tomorrow!

Happy Responsibly-ing!!

Tip #346 Frightening Fear; Your Inukshuk

     The Vancouver Winter Olympics (2010) really put Inukshuks on the map when they designed a logo that featured a very colourful Inukshuk. Growing up in Northern Ontario (the Near North), I am no stranger to the Inukshuk, nor to it's most common message - we were here. Now, before you say to me "But Val, it's not an Inukshuk featured on the logo, it's technically an Inunnguaq..." isn't it? Um, er, hmmm - what?  Although there is some controversy about the name, I won't get into that here. For now I will say that if the term Inukshuk was good enough for the Olympics, it's good enough for me!
     For those of you not familiar with the Inukshuk (or it's variations), if you click here you will see a picture of an Inukshuk; it looks like a piece of art, and, well, it is, though it is much more than that too. There is also a great youtube video here that I recommend. For now, I will simply say that an Inukshuk is a crudely (man)made marker meant to outlast wind, rain, snow, sun, and even grandfather time. It's constructed using only the rocks at hand, and is not meant to be perfectly uniform. Thus, each Inukshuk is recognizable but unique (like snowflakes). And, the most important part - it's "raison d'être"? The Inukshuk serves as a marker. No, not the Sharpie markers of today (but come to think of it, they last pretty well too!), but markers that tell a story like; we were here (mentioned above), or someone was here before you, or friendship is found here, or something happened/happens here. 
     Why, for example, is knowing that someone was here before you so significant? Does anyone really care that there was another person at the bus stop 10 minutes before you arrived? No, of course not (well, at least I can't think of a scenario that would make one particularly need to take note of that). But, if you were journeying through Arctic lands by foot, or even by horse, in winter snow in unpopulated areas, then would you care that someone was there before you? Yes, I bet you would. I would. Ah, now we're getting somewhere...
     So, would that caring be compounded if you or someone with you was ill, or had a heavy burden (like a an injured man)? Probably. It would for me. And would you be especially grateful if those before you (100 years or 100 days before you) pointed the way to safety (water, good hunting, shelter etc)? Yep, I think that would be extremely helpful (especially given my sense of direction!).
     Now, I know, you're about to say that's all fine and dandy, but I'm never going to be in the arctic, (unless of course you already live in the arctic!) so why should I care about this? Because you are in the arctic, well, figuratively speaking at least! How do you think you would feel if someone suddenly dropped you out of a helicopter into a deserted blizzard in the Arctic (i.e. informed you that you have cancer and have to have radical surgeries and treatments right away)? Terrified? Is there a word stronger than that? Petrified? Yep, it would be scary - and that's okay. What would make it less scary? Going through it with someone who's already succeeded at it (even if only a little)?
     Yep. Learning what you can about the Arctic; it's resources, how to dress for that kind of cold, what to do if you get frostbite, and how to react when a polar bear is thinking you look like dinner, etc. will help you not just to survive, but to thrive as much as possible. The same can be said for recovery - never have there been so many resources on nearly every condition at your fingertips. That knowledge makes a big difference in helping you survive. Living in this technological era with the Internet (though still woefully under utilized I think) not also helps you to survive, but to thrive too. For instance, isn't it incredible that if you are the only person in your entire country with a particular condition, you can still surround yourself with a community of other's who either have the same condition, or have other conditions but share the same kind of human experience? And to be able to do all of that in your living-room via a laptop, well, it doesn't get better than that (well, I guess it does if you don't have to use it because you're no longer ill, but if you are recovering, it doesn't get better than that!). So, given all of that, here's my fear-fighting prescription of the day...

• Look for Inukshuks constructed by those who have gone before you. A lot of organizations have support groups/programs for individuals who are affected by severe illness or trauma.Within those groups you will usually find people at different stages of of the process and there is much to be gleaned from others who have been dealing with similar situations for a while. And, as you are well aware since you are reading this, you can find all sorts of blogs about a myriad of topics that might be of use to you. When I started my blog I thought that if I could let even one person know they weren't alone, then there was a point in continuing it. Hey, thanks for reading this blog too:)
• Make An Inukshuk map for yourself. On a piece of paper, consider marking down where you started (onset of illness/trauma), how far you've come (each milestone you've conquered), and where you want to go (ultimate recovery goal). Remember the Inukshuk says "We were there?" -well, be proud of yourself because you are not there anymore - wherever "there" may be. Bring the map back out periodically and be amazed at the progress you've made.... 
• If you are able, be part of someone else's Inukshuk. Figuratively speaking, be an Inukshuk or even one of the rocks that go into someone's Inukshuk. If you've been "there" in the bowels of the recovery process (hey, that pun wasn't intended!) in all it's - well, we'll say - glory, then consider helping others through it. There's no pressure to do so from me, and there shouldn't be from others either, but it feels good to be able to when appropriate.

     Whatever you do, and however you cope, take heart - you are not alone. Someone has been here before you. Even if no one else has the same condition as you, you can still benefit (in amazing ways) from others who are walking through a similar recovery journey. Despite a difference in conditions, most people will experience common issues/elements in their journey - loss, grief, frustration, gaps in service, small victories, compassion fatigue, and so on and so on.... Learn to learn from each other. There will always be moments of fear in any race, activity, or life scenario. But if you mark where you were, are, and are going to be, share that journey with others or just share in the journey of others, then the fear might just get frightened away! Fear has nothing on Inukshuks!

Happy Marking!

Tip #129 Frightening Fear; Two-Stepping-It

     As someone who has survived and are recovering from severe illness or trauma, do you ever find that the question "How are you?" is simply not asked all that often, and when it is you don't know how to answer it? Caregivers, do you have any idea how to answer questions about whether or not your loved one is improving, or how you are feeling emotionally and physically? And even if you do feel like you can answer that - have others stopped asking?

     If your answer is "yes" to any of these questions then guess what?  You are not alone! Why does this pattern happen so often? My take on it is that others are uncomfortable, and scared to ask. It sort of reminds me of watching two-step (or line dancing) country dances. Some people want to participate (and do) while others are too scared to try - even though you know they are dying to try it out. They watch, but don't participate, and I think it's out of fear. It's amazing to me how we can unintentionally allow fear to grab hold of us, and let it limit us in life - in both the big things and the small.

     Yep, fear is a powerful thing. When people are scared, that whole "fight or flight" response gets kicked into high gear. It's one thing to go through trauma (and/or watch it happen), but another thing entirely to figure out how to talk to someone about that trauma during the trauma or the recovery thereof. And, when you mix fear with loving someone (going through trauma with a loved one rather than the tiny amount of fear in the line dance scenario), well, then fear can become an entity of itself. Some dig in to fight, and others respond by putting the petal to the metal in order to avoid potentially hard discussions. But, why are they so scared of said discussions? Often people are:

• Afraid that they won't know how to respond to your honest answer (i.e. what if they tell me they are going to/want to die, or want to talk about feelings (that's scary enough for a lot of people without illness in the picture!!)?
• Afraid that they'll say the wrong thing (i.e. advise you to take steps in the wrong direction)
• Afraid they'll make you feel like you have to update yet another person 
• Afraid that they won't understand the answer (in terms of medical knowledge)
• Afraid of saying something downright stupid and/or insensitive (which has been known to happen - but not all that often (LOL!), and, let's not forget...
• Afraid they'll not know how to be encouraging because some of the challenges you face are feats that even a toddler can do...

      It does get tricky sometimes! If you really do want to improve the communication situation then I suggest you try to do so by giving others specific items on which to focus - but with limited details. While I know you may be saying "Well, that is all fine and dandy Val, but how do I practically implement it?" Good question. Here is my suggested proverbial 2-step dance routine 

Step 1) Name a symptom and/or goal without stipulating a time frame.  "My muscles are very weak, and my current goal is to be able to walk around the kitchen table." A statement like this is simple for others to understand, and to recognize the level you are at in an uncomplicated way. People can visualize how far of a walk that is, and what obstacles may hinder you from achieving that goal. But, they can also visualize what getting three quarters of the way looks like too, and how significant and great it is to do so. 

Step 2) Name it's optimal outcome with a time frame. "I am working towards being able to walk around the kitchen table once a day this week, and twice per day next week." 

     Why the distinction between the two steps (they're often considered as part of one step)?

     a) Timing is usually part of a goal. If you don't get your assignment in on time you get zero, but zero is not an option here (you will want to walk around the kitchen table some day!). You or your loved one needs the part-marks for what has been accomplished despite it's inability to be completed in full on time. It allows for wiggle room and good morale.

     b) It presents the information in an uncomplicated, familiar, and relate-able way. Choosing one symptom (fatigue for instance), allows people can relate, even if it (fatigue) is to a different degree. It is easier to empathize.

     c) A simple outcome may help others feel like they can intelligently ask you about the progress on the outcome. So, maybe a friend can now ask you how many times you've been able to walk around the kitchen table this week as opposed to a general "how are you feeling?" without fear that they won't understand the answer you give them.

     d) It allows for a tangible marker in terms of progress and illustrates that a "small" feat is no small feat, and worth celebrating. 

     All in all, by doing the proverbial 2-step you're making others feel comfortable and giving them tangible ways to ask questions without having to be afraid of the answers, and especially detailed medical lingo-ish types of answers. It feels safer (less vulnerable) for those asking, and makes it easier to feel like they've participated. In the mean time it may help you feel like you are being valued and cared for because the communication lines are so much more open.   

     So, it's a good thing to do the proverbial 2-step. Yes, there will always be some who stand away from the crowd, and don't want to dance at first or at all, but that's okay. Not everyone needs to be a good dancer (or in this case - communicator), and not everyone who wants to dance has a knack for dancing either. That doesn't matter; it's the intent and the attempt that are important. And the beauty is that you get to decide who you will ask to dance and who you will allow to dance with you. Choose wisely, and try not to let fear scare you into standing on the edge of the dance floor. To me, it's worth the effort. 

Happy 2-stepping!