Wegie talent outlet

[annekat]

Very nice poem, Mike! Thanks for sharing it.

[Alysia]

aww mike, your poem is so touching can you add a pic of this place ?
there is similar song in hebrew, telling about coming back to the city of childhood, but then in the middle of the song he sing with pain: but where are the kids that I used to play with ? where did they disapear ?
hmmm nostlagy

[Jaypfei]

Unfortunately, I'm not much of a writer, otherwise I'd have written a book about what I am going through with GPA. My talents are in the needle arts. Sewing, quilting, embroidery, knitting, beading and card making. I have a love/hate with card making. Inspiration doesn't come easy and I find it a bit of a challenge. But I'm still learning the craft and getting some nice cards to send to family.

[annekat]

Unfortunately, I'm not much of a writer, otherwise I'd have written a book about what I am going through with GPA. My talents are in the needle arts. Sewing, quilting, embroidery, knitting, beading and card making. I have a love/hate with card making. Inspiration doesn't come easy and I find it a bit of a challenge. But I'm still learning the craft and getting some nice cards to send to family.

I've always been drawn to the textile arts and often have wished I'd stuck with that and steered away from pottery (so messy!). Maybe I'll go back there some day. I think card making would be hard for me, too, but the others you mentioned, I'd love to be doing.

[Alysia]

Unfortunately, I'm not much of a writer, otherwise I'd have written a book about what I am going through with GPA. My talents are in the needle arts. Sewing, quilting, embroidery, knitting, beading and card making. I have a love/hate with card making. Inspiration doesn't come easy and I find it a bit of a challenge. But I'm still learning the craft and getting some nice cards to send to family.

come to this group then: https://www.facebook.com/groups/381782435251013/

[Jaypfei]

Oh wow! Thanks Alysia. I had no clue there was a group like that.

[annekat]

Oh wow! Thanks Alysia. I had no clue there was a group like that.

Me either... I just requested to join, and hope to hear something from them soon!

[LisaT]

I can't take credit for this poem, but wanted to share it because whenever I am going through a tough time in my life, I come back to it again and again, and it always helps. I hope it can be of some help or inspiration to others here. It was written by my late grandfather (who I don't remember but somewhat know through all of his writing…): His references to breathing are slightly ironic in the Wegener's context, but the rest seems to fit.
Don't Bow
by Nelson J. Gotlieb

No! Not now.
Lift your head
Look into the storm
Wince if you must.
Cringe too, but stand,
Till you square.
Step back if you must.
But lean forward into the wind.
Let the storm stream down your face
Let the fear shudder your spine

Die a little
But live, still stronger,
Once more proven.
Now, the mortal storm gone
Again you see beauty
A tremendous, while boiling cloud, in blue

The sight of a leaf, fresh, green
Storm wet-trembling
The tremulous hover of a butterfly
The feel on your cheek of caressing warmth
The swell of freshness
The sharp breath intake
The expansion of deep breathing lungs--
And swelling heart,

Now bow--
If you will
Bow to receive these blessings.
But not for the weight of the storm.

[LisaT]

And here is the 'blog' in which I discussed the above poem (quotes around blog because after four years it has three entries ) that I started in the midst of getting the RA diagnosis (which I now think was Wegener's in one of its many disguises). I wouldn't call the ramblings talent per se, but I always like to read of others' experiences too so thought it might interest some. I have never really shared it with anyone other than my mom and my best friend. I already feel more comfortable here than in most of the rest of the situations in my life… Here it is:
The title of my blog is the title of a poem by my late maternal grandfather, Nelson J. Gotlieb. Although I was two years old when my grandfather died, his words have helped me to get through many difficult times in life. From my mother’s stories, his prolific poetry, and the many items from nature that he collected and my mother kept–shells, sand dollars, preserved shadow-boxes of butterfly species–I feel that I know him and he has been a presence in my life (and dreams) always.
As I cried on the phone to my mom recently, she reminded me to re-read his poem. I was in the midst of a pity-party in the early weeks of learning that my old ‘friend’ pain has another new name: arthritis. (I don’t yet know which type, but am told it is either rheumatoid arthritis or ankylosing spondylitis. The unspoken subtext is that it could be both since I’m exhibiting symptoms of both. I’ll know for sure when I see the rheumatologist again and go over test results on August 31st). I told my mom I didn’t know where my copy of the poem was. Coincidentally, while I absentmindedly emptied out a drawer in my room, I came across a copy I’d written by hand from one of my mother’s books of his poetry:
(See "Don't Bow", in previous post in this thread.)
As in the past, I was both comforted and challenged by his words. This pain in my hands, my feet, my elbow, my knee: it is just more manifestations of a companion with whom I’ve lived for years. Pain and me go way back; as do me and my fatigue. I have no memory of what it feels like to not be tired. I know that as a child, I experienced life with a ‘normal’ person’s pain or perception of pain, but I honestly don’t remember what that feels like either. I used to do cartwheels, backbends, walkovers, splits, races, hurdles, downhill skiing. I was so proud of my flexibility and used to push my body to see what it could do. I can remember the movements, the fun and thrill of all of these activities, but I can’t quite grasp the tangible feeling of not hurting. In my mid-twenties, after many months of increasingly scary symptoms, I was finally given a name (at the time, two) for the hurt and fatigue: fibromyalgia (still with me) and polymiositis (fortunately treatable, treated, and apparently gone).
These days, I have trouble getting down the stairs in the morning. My feet throb and scream at me, “What are you doing living in a split-level? Are you NUTS?!?!” I get on the computer and my cold, stiff hands threaten to make even typing difficult.
But I keep coming back to my kids, my husband, my grandfather, my self. For all of us, I need to be stronger than my pain. I need to find new ways to adapt and cope. I need to move forward (and someday out of this split level!) and not get stuck in the feelings that threaten to overwhelm me: self-pity, anger, frustration, fear, and most surprising and unfamiliar, apathy. I have been through many phases and exhibited many characteristics, but I don’t think anyone would have ever, at any point in time, accused me of apathy. I’m not about to let it sneak its way in to my life now. I have always spoken up; not just for myself, but for anyone who appeared to need or want my voice or my anger–another whole issue or blog that may be intertwined with the whole pain-and-fatigue theme–to speak on their behalf.
Maybe I was born tired and a little bit sad. I am many other things: funny, precocious, strong, generous, sensitive, caring. But sad and tired have overshadowed me and my life, lurking in the background and always there to join me in any relationship or endeavour. I’m told that I am a ‘glass half-empty’ thinker. I don’t agree. I’m so grateful for all of the good things in my life. I’m optimistic about people (too much so: I trust first, think later). I have been the fortunate recipient of so much love and luck. Just being born into a family with a mother who totally gets me, a father who now gets me even if it took him 20 or 30 years (and who loved and appreciated me even when he didn’t), and siblings who are also best friends makes me one of the luckiest people I know. It’s just that I am also a critic, hard on everyone and everything around me and including myself. I always have been a dissenting voice. For whatever reason I’ve seen it as my duty to argue, challenge, question. I’m also somewhat of a sponge for stress, negative emotions, and sadness. In addition to my own share (and we all have some, otherwise how would we recognize the good stuff as good?), I absorb these things from other people, from the news, maybe from the air? Most likely from the air, if you believe it’s all about light, energy and vibrations rather than matter. I wonder whether this quality predisposes me to pain or opens up my immune and nervous systems to malfunction. Random thoughts as I search for reasons or explanations for why, despite everything good in my life, it’s always come side-by-side with being so tired I have to check out for a part of each day to sleep, ideally a few hours more than the average person, and so sore that the activities normal (average) people usually take for granted are challenging and frustrating for me on any given day.
I don’t know the answers to these questions. What I do know is that once again my grandpa Nelson has helped to soothe my pain and inspire me, and that I’ll do my best despite my cranky nature to heed his words.
I’ve started this blog as a way to process what I am going through without burdening my family and friends with a constant monologue about my condition. I hope to some day be brave enough to “out myself” and make it public in the hopes that others might find support or strength in my words. For the time being, I am feeling too vulnerable and exposed to open it up to the world at large.

[windchime]

The poem is excellent Lisa. I can see why you turn to it time and time again. I'm told that it helps to write down our feelings.Thank you for sharing your very personal thoughts and feelings.

One day i'll get it together and share what my hypothesis is on why we were all brought to where we are. It's interesting.