Sometimes trying to find my way in the world is exhausting LOL/ I refer not to mobility but the “where do I fit in this puzzle” thoughts. Searching for where we fit in the social structures of society is a normal thing. Teenagers a perfect example of testing out theories. For many years I had my puzzle put together and I was self assured I knew where my piece fit in. Then came multiple sclerosis! Soon my puzzle started coming apart – puzzle piece s stopped fitting and soon my puzzle totally disassembled.
The Puzzle
If I were to divide my present puzzle up into major components I would start with three. Personal friendships and family, adaptive physical educations class and support group peeps, and Ms bloggers. The first group contains the most puzzle piece s that do not always match. I thought the second section would contain the most like pieces but . … and the third? Let me know!
Puzzle Pieces – Lost expectations
Gosh I expected that those pieces of my life – my friends and family – would have been the first I could reassemble my puzzle from. Some puzzle piece s grew legs and split as soon as finances became an issue. I never noticed the image on the puzzle piece was that of dollar bills being spent on dinners out. The puzzle piece s with single track running though the forest and poker run arrows on the pavement faded and their edges became bent. Nothing depicts a last minuet road trip than a puzzle piece showcasing the rest stop facilities. Apparently bright blue porta-potties do not blend well with the yellow stripe on the roadway. I think someone dumped another puzzle into my puzzle box when sorting this one out. After sorting the folks whose pieces still remain form the border of the puzzle. Long gone are the pieces that got lost along the way and a few that are still hiding lost in the fuzz bunnies of my life.
Puzzle Pieces – Comparison’s
Getting pieces to fit in the second section . Each piece has it’s own set of sort rules. In PE the people with MS are down right obvious about their sorting. I listen and observe and it has been amazing. First of I must admit that I have my own sorting process – those who try to exercise and those who do not. This sort of mine includes everyone in the class. The MS people (most attend or support group also) seem to spent a lot of time deciding where everyone fits in their world. I finally overheard enough whispered comments to get a general idea of the main sort. Those who can do many things better than the person sorting and those who are worse off. By their standards of coarse :). If doing better they start discussing it. I am so happy to hear that I must not have MS because I can do _________. It would be funny but ostracism is not fun if your the one left out.
The most interesting part of the sort to me in class is that the non MS folks do not seem to judge as much. They either like someone or they don’t. It does not appear to be based on abilities but personalities. Cool. Wonder why the MS peeps judge so much? It is understandable that everyone is not everyone ‘s cup of tea so to say but, tossing out a puzzle piece based on how it’s disability compares to yours is illogical to me. If I were to toss out all the pieces that were smarter, faster, more tenacious than I, I would end up with a bunch of pieces all of the same shape, size, and pattern – how would my puzzle come together to form a complete picture?
This leaves Blogging, blogs, bloggers . …
Where do you fit in???
Where is your puzzle piece?
One of the songs that I always have thought fun and it’s simple tune gets stuck in my head worse that Flipper, or Mr Ed . … is the Purple Puzzle Tree.
and we have the Beatles also:
I was getting ready to link to it here and sherristakes twittered the Joe Cocker version as I was posting so:
Puzzle pieces from today know as link sharing:
Check out her Zentangles
And do stop by and visit Lisa if you have not done so today!!
Share the links – be piece of my puzzle.
ah the puzzle pieces…. this hasn’t been such a thing for me since i’ve sort of always been the odd one out… the black sheep… the weirdo… the wallflower…the nerd….the hermit…
but i did hurt when some lifelong friends disappeared upon my diagnosis… i don’t know why really… i can assume… i can speculate… and now there’s this big hole in the middle of my puzzle… gradually i am filling it in…
the bloggers are incredible! i have found more friendship, compassion, knowledge, and empathy through blogging than anywhere else in my life … coach tries but it’s hard for him to understand, really understand…
thanks for the mention!!!
I find reading blogs and commenting when I do not chicken out really does help fill in the holes in the puzzle.
It is hard for some to understand – frustrating trying to get those closest to us – I wonder if KRP gets it really or if I do not give enough credit? But I am thinking I sure do not get what being on the other end of the deal is like so why would she understand my end?
Jan
I think Coach understands as much as he can. He says “thing is, I don’t think anyone fully understands as much as they try or want to”… I bet it’s the same with KRP…. there may be a sense of understanding, but there is no way she can truly get it without being in your skin…. much the same that we don’t understand what having cancer or some other disease is like. For me, I can’t imagine what it must be like to be told stage 4 cancer, 6 months to live… how does one even begin to process that?
Our part in all of this I believe is to help them learn what we need and to communicate well with our partners so they can support us and love us in the ways that we most need.
Communication! A very important piece.
The birds of a feather saying does seem appropriate with blogging not necessary the same disease/condition/whatever but the same issues.
Jan
Hi Jan,
I don’t think I am “normal”. I have never worried about where I fit into the social structure of society. I think so differently than most people, that I have never really fit in. That doesn’t bother me. I actually prefer not to fit in. I have always been a non conformist.
I too lost friends when I was dx with MS. Why? I don’t think I will ever know. Maybe because I no longer fit into their puzzle.
In the blogsphere. I don’t know where I fit in. I just know I have made some great connections, and friends. The support, compassion and camaraderie of fellow MS bloggers makes a difference in my daily life.
Cheers
what is normal anyway? Seems many of us march to a different beat than the average.
I suppose your thought is correct just as my puzzle pieces fit – I never really (selfish) thought the other direction – that my piece did not fit theirs.
well you fit as a piece of my blogosphere puzzle –
jan
Oh thats good to know…that I fit in as a piece of your bogsphere puzzle. But…it seems that you are no longer a follower on my blog…is it something I said?????? Hoping it’s just a blogger glitch.
Cheers
Where did it get lost from? I am not sure I still am reading following etc I did switch to new newsreader ugh oh tell me where and I will fix it as I do read every post!
wow humom checked and somehow a bunch of follows via blogger/google friend connect got axed! Yikes she is trying to add them all back in . …
Humom is a tad confused as to how this happened and is really sorry – I hear her muttering oh my yikes and some other words Annie and I are not allowed to woof out.
I will follow you now too
Catfish
Thanks Catfish… tell mom ! see her back on the list. BTW, Merf says hi…er…..woof
I love jigsaw puzzles, though now I only do the online ones. My rule: always work on the borders first. So if you did that, maybe the configuration of where you fit in might change. You’d be that last piece — the keystone, the piece that makes it all work. And what do you have when it’s finished? A lovely picture of you and your world.
Peace,
Muff
I always do the borders first – like the foundation of a building.
Yeah in my world I guess I am the center ha ha the center of my universe.
The big bang theory – expands outward. But my world is getting smaller LOL
ummm
Jan – I’ve been puzzling about your puzzle. Probably because I see the world in Venn Diagrams 🙂 And, likely because all sorts of things swirl in my head and it takes me a long time to put them into something coherent.
The friends and family piece has been surprising for me. I never would have predicted who came to comprise the very small handful of pals who not only remained in my life but engaged in the journey. Am definitely closer to family (mom, dad, sis & her family). Although I’ve never been one who had to be in a relationship, I am discouraged by the likeliness of chronic singledom. I consider myself a more of a mater than a dater. I have a difficult time envisioning how a new relationship could be under my circumstances. Sometimes I wonder though if it’s not easier solo — not from the caretaker assistance angle but from the emotional angle.
The comparison and blog piece overlap for me as I have no non-pixelated support group or such. I do know that I feel a bit lost now. Since I haven’t been flying under the “MS spectrum or Atypical MS” label for a while, I asked Lisa to remove my blog from the Carnival. I like hearing from and participating in blogs of folks with different labels. It’s more who they are than their label or their level of function. However, I feel odd now posting on a new blog. Like I’m probably being sized up — which is natural — who are you and what’s your deal you label-less person. And, because I’m not technically one of them (MS, Lupus, EDS, etc.) although my function may be far less than theirs.
I suppose my profile makes it sound like the tumor is the bigger issue. Which aside from the hardware-headache issues, it’s not. When one sees me in public, most folks assume MS unless I’m slurring. I don’t participate in other social media as it’s painful when pals from the past enthusiastically “find me” only to disappear quickly when they figure out who I am now even though I downplay it. So, my blogger pals are really important to me. I really am interested in the non-chronic condition issues too — the dogs, birds, freaky neighbors, and such.
I’ve run outside the mainstream circles most of my life. Sometimes I wonder if that was preparation for now. Who knows. Interesting questions.
Donna
well the infinite collections – each set could be a puzzle piece LOL
Glad your Venn diagram intersects with my puzzle.
It is amazing how many “friends” disappear into the ozone.
Labels now that is a subject! Are they a hindrance or helpful in the sort?
🙂
You know after reading Zoom’s entry, I realize that I too was at a transition for friends. And, that’s part of it. Although I had a recent dis that was an ouchie. Grad school pal reconnected and was talking about coming out to visit which is a big deal in my little world. I eluded to the last few years events — lightly and jokingly, I thought…SILENCE. No response email on setting a date to get together. Ok, got it.
Labels? Depends how you use them. They can be downright handy for both navigating the system and setting a baseline context of understanding. For instance, when I went to Dr. Pain and he was assuming the discomfort from my incision was all nerve-based. I was trying to explain that, no as the muscles tighten / spasm with fatigue or when anti-spasticity meds wear off, it gets painful. He was wondering, understandably, why does that happen and how come you’re taking these meds? Well, I’ve got some kind of condition some say blah, blah, others say blah, blah, current speculation is blah blah. See where I’m going? Even though there is a radically huge range if someone has MS, Lupus, Myopathy, etc, it’s a starting place. A context.
On a more personal level though, such as blogging and sharing, I like to look beyond labels or at least not get hung up there. There’s so many overlapping issues that folks with chronic conditions share. Besides since there’s such a range of function under one label umbrella, differently labeled folks may relate more than those with the same label based on whether they’re in an RR type scenario or on a progressive slide. Heck, just finding a kindred spirit is half of it. Although it has been interesting as I’ve gone through my journey of various diagnostically speculative labels to notice on forums and blog an aggregate disease personality that presents itself.
Totally off-topic…my condo was listed today…for 70% of my purchase price. Sigh. Not sure where that piece fits.
sorry about the 70% 🙁 hope it speeds up the sale) . I can not phantom dealing with all the changes your dealing with.
Yeah labels do have a place and use. I assume (correct me if wrong cause assume you know the saying arse of you and me LOL) that Not having a medical label has got to be hard. Not just the crazy doc stuff wanting a answer but just in everyday communications.
I liked your neuro-wonk label. As for relating more with someone with the same “label” I have not found that necessarily true for myself. More personalities, the kindred spirit thing, for me. Folks I am willing to bet that if we got together in real life V internet that we would have a great time and enjoy each others company.
Blogging is reflective of real life in some ways. I have commented on a new to me blog and been totally ignored. I might read the blog for a bit but I usually remove it from my reader. I mean if I went to a dinner party and someone would not talk to me it would be real obvious that we did not connect. I always wonder did my comment offend LOL.
We do not walk around with name tags when we go shopping, out to dinner, etc. that say I have diabetes, MS, lupus, so why is it different on the internet? Umm .
I am still mulling the “aggregate disease personality” around in my head – it may formulate or it may not LOL
Interesting things to think about, Jan. The ‘family’ piece of my puzzle helps me as much as I help them, which is to say, as much as we can from 1200 miles away, either over the phone (which I hate), or by e-mail (which they hate). Besides, my dad is 90, and my mom nearly that. They have their own health problems, which in their way, are much worse than mine. My brother and his kids look after my parents as much as they will allow. I know he would do anything I asked of him if he were nearby, because that’s the kind of guy he is, but I’m glad he lives near my parents because they need him more than I do.
The ‘friends’ piece of my puzzle is a little hard to sort out. My MS diagnosis more or less coincided with moving from Michigan to Washington state, leaving all my in-person-type friends behind. I don’t know if they would’ve been put off by MS or not. I haven’t made many new friends, but that’s just me. I’m not a very gregarious person. And these days, people really have to want to visit in person. Some do, but not many, and not often. In general, I know I’m not good at keeping in touch with old friends. If they drift away, I assume it’s my fault, because it usually is.
I don’t do any in-person support groups, because I’m not a support group kind of person. It’s not part of my puzzle.
Like my in-person friends, I don’t have a lot of blogger buddies. There are a handful of bloggers I visit whenever they have anything to say. They’re smart, thoughtful, perceptive, and eloquent. Or sometimes just silly, and that’s good too. I think of them as friends, because I like to think we would be. Like now, sitting around working on a virtual jigsaw puzzle.
yeah I do not have many in person friends kind of think it is me not getting out there who knows and I am getting less and less that worried about it.
Blog peeps can be friends and maybe closer to knowing the truth about each other – assuming we all tell the truth – i think those who do not are not in my puzzle anyway.
I wish I did not do the support group thing as well … but every once in awhile someone comes to the meeting and I think wow we could probably be friends. I think about asking if they want to go have some coffee or something and then I chicken out.
The last time I stepped out of my chicken self I ended up finding out the person was what I call a needy energy suck hole. LOL if you know what I mean.
Jan
Oh, one more thing, Jan. There is a Fun Police firewall at that blocks access to games, streaming video, and other potentially not-work-related web sites. Apparently your blog is way too much fun, because it blocks that, too! Thought you would be amused.
Very and for some reason two of your comments went to spam folder LOL what is up! Too funny
One more thing, Jan. There is a Fun Police firewall at that blocks access to online games, streaming websites, and other potentially entertaining, not-work-related Internet resources. Apparently your blog is way too much fun, because it blocks that, too! Thought you would be amused.
One more thing, Jan. There is a Fun Police firewall at Gloria’s Books and Adult Day Care Center that blocks access to online games, streaming websites, and other potentially entertaining, not-work-related Internet resources. Apparently your blog is way too much fun, because it blocks that, too! Thought you would be amused.
umm maybe it is because I got carded too many times while photographing something that for whatever reason they decided was ‘a national security issue” ha ha such practicing night photography miles from the airport by taking photos of airplanes – or maybe it was the interesting shot of the fed building I was trying to get from across the street as the sunset?
Years ago this blog was visited by the peeps back east if I typed something with certain key words in it.
maybe it is my high security clearance I have at the coffee shop LOL hah hahaha crazy.
I should use that as a tag line the blog that is to fun for the police firewall . …
😉
Too funny — I see that you’re rather proud of this by new header 🙂
Hey I like one liners! Sides it really is funny no?
Hey Jan,
Thanks for the shout-out!! Very interesting thoughts about puzzles. Growing up, I knew kinda where I fit in if I kept to one particular puzzle – music geek. But I was not quite as ‘geeky’ as some of the others who seemed to know so much more than me. I just simply played (really well, mind you) but wasn’t one to stand out and be noticed (or so I thought). In fact I felt kinda invisible in most circumstances.
With family growing up, I was usually the odd ball out. Literally, I was the only granddaughter on one side of the family and didn’t ‘play with the boys’ so much. I was the one who took a book to read at family gatherings. Call me into the kitchen to help with all the other women? No thanks. I isolated myself.
Right after the MS diagnosis, I didn’t really feel as though I was part of a specific puzzle or group. Not until after blogging and the Carnival got going did I feel part of a group or community. Kinda nice, and I’ve definitely made some really friends online which have extended offline.
Then not until Facebook has my world come together into one glorious puzzle. People from all corners of my life in one place, mixing my life with MS into it all. Just yesterday I posted something about a trip I took into DC on Thursday. One of my cousins gave a response which reinforces why my particular puzzle should stay large and inclusive.
Jim wrote: “Thank you for sharing these experiences. It does make one think more about the potential challenges of others who cross our paths. ”
Those people with whom I thought I was invisible in school? They have been supportive and have shown themselves to be friendly. It has begun to change how I perceive myself. It totally alters how pieces of my life become sorted….and it plays with my mind occasionally. 🙂
Thank you for being part of that huge puzzle. and making me think this Sunday morning.
Hi Lisa,
Nice to see a comment here from you. My news reader messed up when I updated firefox and then many of the feeds I follow got deleted. I am still reading your blog and am catching up with others. Some of my puzzle pieces just disappeared they showed on the list but were not actively being followed anymore – wonder why everyone was so silent ah ahhaha.
My school experience sound very similar. I did have a few close friends but – well another story. The friends I have now are super and supportive. Just a few but true friendships.
Your blog is awesome. Carnival brings so many folks together. Each finding their own pieces for their puzzles. You should be proud of all you have done and still do!
Glad your in the puzzle!
Jan