Another “Normalcy” Battle


Despite having lost so much to this disease in my battle to pass for normal, I am refusing to give up on my therapeutic efforts as life spent sitting in a chair will lead to death sooner rather than later.

I have spent my life defying the odds, being yelled by Mom from across playgrounds and wooded fields (in the days before inhalers – pre-1979) to, “Slow down !”  And called by all three of my names (so I knew she meant business) to “Walk !  Don’t you dare run – you just got out of the hospital !” (or out of bed or off the couch) – wherever my exhile was for that particular round of the disease now updated to COPD status.


All well-meaning cautionary efforts, both for my fragile lungs and the exhausted family budget, but which I ignored with the fervor of a bird escaping a gilded cage.

I wasn’t foolhardy by any means, but when every direction you turn provides more and more restrictions, who wouldn’t prefer to burn bright and fast than to be stuck simply sitting in a chair, waiting to fade away?

It is that dilemma I’m facing with this weekend’s show.  The lawyer’s advice has taken the place of my Mom’s screaming echoes from childhood memories, and I resent the restrictions being placed on my movements.  I can do anything if I take enough breaks and sneak in a nap or two.  I refuse to sit in the same chair every day, looking out the same window, talking to the same people.

I can be sick anywhere.  Chairs and beds exist all over the world.  Only time will tell if this latest stubbornness is foolhardy and self-damaging.  For now, I have to trust my own judgement and rest as much as I can to protect and conserve my limited energy, while also continuing to have fun and set goals that make life worth living.


Everything that I’m able to create despite the challenges of my twanging right hand and wrist or flagging energy remind both me and the world at large that I will continue to try my best to remain active and busy despite the daily limitations of my over-taxed body.

Every poorly-executed design that I’m able to tear apart and try again to complete reminds me that I have nothing left but time on my hands, and that I won’t fade quietly away without trying to put some beauty into the world before I go.  Beauty created at my own slower pace, with limited timelines.


… and which forbidden physical activities also remind me that I must remain active as best as I can, while I can, or risk being institutionalized sooner than I would like because I simply didn’t exercise enough or keep moving enough to keep atrophy at bay.

There is a mobile home on the market where I want to live, and I’m hoping to see it next week.  I’m not sure I have enough cash on hand to buy it, or if my restricted circumstances which prevent me from accessing my 401k while still in decision limbo make it foolish to pursue this unit, but I’m determined to try anyway.  I’m more rested.

Unlike last year’s effort to buy a mobile home in this particular Senior Park, I’m not under the gun to make a decision before going out on Disability, and I’m not working with the realtor who had her own agenda vs. listening to my stated limitations and desires.

Hopefully, if approved for a loan, I’ll do a better job pulling this home purchase together, presuming it’s the right one for me.


Fighting all counter-productive restrictions, I will keep plugging along, remaining engaged in the world and trying to find contentment in each day.

Come what may, damn the torpedos, and full speed ahead.

2 thoughts on “Another “Normalcy” Battle

  1. Good for you! I never ever thought that you’d just sit there quietly and wait for whatever comes. And those foolish enough to demand that you do that don’t know you well, do they? I liked this sentence “while also continuing to have fun and set goals that make life worth living.” That last part in particular is resonating with me right now …. I am in a mind set currently that makes me question why life is worth living at all. I’d trade you problems in a heart beat. Because (this will sound morbid and self-pitying, which it IS)…right now I can’t see any joy, I don’t want to be here and I think it would be greatly comforting to have someone tell me I had >insert number of years< left. All that I have is a great yawning abyss. I'm holding on firmly to Huny's leash in the vain hope that she'll walk me out of this dark space and into the light again. And I admire you so much you'll never know. Because you do keep fighting and trying, and doing things and accomplishing your goals. It's really marvelous!

    Liked by 1 person

  2. You’re in the very hardest part of recovery – still being in pain, and not feeling yet well enough to begin to enjoy life again.

    Add in your very real challenges with depression, and your neighbors moving, and it’s clear that finding and setting some goal that you want to work to achieve may help to alleviate the business of not wanting to be here.

    Believe me – as I struggle with learning my Disability fate, and try and be patient while restrictions abound – I think very practically.

    – Why am I here?
    – Is this all there is?
    – If nothing really matters, what do *I* want to do to add some color to my life?

    I’ve already been down the road to euthanasia, and I would happily embrace a final date if my disability application were not approved. However, Society and the Nanny State, wants me to really suffer in order to be given disability as my age – 55 (when retirement is 12 long years away) – really calls for me to keep on working. Were I to have enough energy, I’d happily return to work. But, our capitalistic society is very unhealthy when it comes to the work/life balance, and I need the protection of the Disability mantle and label before I can revisit that topic again. So, I try and keep busy in order to keep from losing my mind. .

    There is so much I can do with whatever time I have left, if not for nonsense and games.

    I just have to keep focusing on the short term – i.e., “I’m not dead yet” – and refuse to be cowed by someone else’s money-grubbing restrictions on MY benefits.

    I have put off my trip to the UK / Stonehenge by one (1) year, but I am DETERMINED that the trip will happen, come hell or high water, and regardless of what the lawyers may advise.

    I hope you find someone beyond Huny to help you get through this difficult time, and find a way to put more joy back in your life despite the day-to-day grind and pain of living.


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s