A Chance for Change

Building a life is a blend of hard work and varying luck; building a fulfilling life takes some imagination as well. We do what we can with the building blocks we have yet there are no guarantees. The principles, priorities, and projects we create a life from are seldom constant so it’s just as important to be ready to deal with loss as it is to be willing to let go. Sometimes, the only way to improve a situation is to change it entirely. A steady improvement of circumstances is certainly the goal though not always possible. It’s the choices we make in the face of loss or when facing a dead end that really matter. Whatever our situation, it’s up to us to make the most of it. If opportunity knocks, it’s up to us to answer. We must take a chance to make a change.

“There are two primary choices in life:
to accept conditions as they exist,
or accept the responsibility for changing them.”

— Denis Waitley

My Hunny and I have run the gamut of fair to middling circumstances, living paycheck to paycheck and making positive moves as opportunities arose. We went from apartment to townhouse to owning our own home only to end up selling it when the work dried up. We moved, started over, moved some more, and were rebuilding when the crashing economy led to Dave’s first layoff. Suddenly moving again, we chose to simplify – having always pared down to essentials with each move – and redefine “essential.” Having let go of the material, it was time to let go of a life filled with quantities rather than quality. Focused on survival but missing the mark, we nearly worked ourselves to death with ever increasing hours and continually decreasing health.

image via InspirationBoost.com

I’d dealt with chronic illness throughout my life and I could no longer pretend it shouldn’t affect my choices. If all change starts with the choice to take a chance, one choice I needed to quit making was the chance I kept taking with my health. Quitting my job meant starting over yet again but we had nothing left to lose. Perhaps we should’ve moved home to San Francisco then but a different opportunity knocked, we answered, and new experiences are never regrettable. Our circumstances had much improved by the time Dave was laid off once more, as I strove to reclaim what health I could in a studio we loved. We were, however, in a town we’d never be happy in with nothing to hold us there. It was finally time to go home, and thank God we did.

“The greatest accomplishment is not in never falling,
but in rising again after you fall.”

— Vince Lombardi

Always determined to bloom where we’re planted, we chose to take root where we’d flourish. The expense had kept us away long enough and aspects of living in San Francisco make up for any relative hardship, from its public transportation and healthcare to the diverse culture and moderate weather with so much in between. As a spoonie, such benefits are life-giving and allow me to have a more active life here than has been possible elsewhere. The debt-free healthcare proved life-saving within a year of making the City by the Bay our permanent home when three decades of Endometriosis nearly ended me and led to three surgeries in under three years. My Hunny and I have spent the past year recovering – financially for him and physically for me.

“Failure isn’t fatal, but failure to change might be.”

— John Wooden

Now that this final geographical move to the one city we’ve both loved since childhood has improved our quality of life, we’re ready – and almost able – to improve our living situation. Repeatedly rebuilding has left me grateful to have a home at all but unwilling to settle for mere survival. We’re in a residential hotel and the conditions here exacerbate my own compromised condition. Moving to the city gave us a fighting chance, and moving within the city will allow me to keep fighting. Unless we’re making progress, we’re facing stagnation and the time has come for taking action. Faced with the need to move despite limited resources, I’ve taken a bold action and started a crowdfunding campaign. I’m determined to thrive, not just survive, and this is my chance.

“Don’t worry about failures, worry about the chances you miss when you don’t even try.”

— Jack Canfield

Home Virtual Home

Where does the time go? Three months have gone by since the momentous decision to acquire our own internet again and we did get back online. That’s the good news. The lack of blog activity is the sad news. I’ve published & unpublished, started & abandoned, loved & ignored a number of blogs over the years. This one alone has seen many designs, posts come & go, me come & go, vied with WordPress, and – most recently – broken. Yes, no sooner did I get back online and start working on this poor neglected site then its dashboard presented with a permanent error. Its settings won’t open, Blogger help is essentially nonexistent, and my energy is limited.

So it is that the relaunch of my online presence has been thwarted. Although this is far from its first thwarting, it shall be its last. That’s right. I’m going for the declaration.. “Challenge accepted.” I may not have settings but I have moxy so, by God, I’m going to rebuild my poor spoonie of a site. As Oscar Goldman* would say, “we can rebuild him. We have the technology.” Well, we have enough to fake it anyway and all spoonies fake it til we make it. I’m done keeping my creativity on hold; it’s too fragile: “Creativity is a fragile, delicate flower which must be cautiously cared for and protected from the harsh elements of ‘human weather.’” — Elle Nicolai

cartoon by Hugh MacLeod aka gapingvoid

My personal weather is stormy and my circumstances rocky, making crashing common. A safe harbor is what I want. Just as my home-tel is a haven in a shared existence, my virtual world needs a corner of its own. I thrive on, and in, the social spaces yet want someplace to collect what I’m doing there. My creative drive coupled with the desire to share what I’ve already created makes an online home a must. To hell with the lack of settings, I’ve got enough setbacks of my own. (That’s the bad news.) If I can’t fix what’s broken, I’ll work around it; pretty damn appropriate given that’s what it’s like to live with chronic illness/es. My broken blog and spoonie self are going to make do then – emphasis on do.

“Do what you can, with what you have, where you are.”

— Theodore Roosevelt

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*Oscar Goldman is a science fiction reference, for you less nerdy than I, and I’m quoting The Six Million Dollar Man.

Pain is inevitable..

..suffering is optional.

I'm in the process of attempting to quantify something I've always lived with yet has never been fully diagnosed; Although I've been in pain for as long as I can remember, my pediatrician was unable to determine why. One example is that my chronic stomach aches were explained as stress yet I've since learned that Migraine often presents as stomach aches in children. The few jobs I've been able to hold over the years have each made the pain and accompanying syndromes worse, to the point that I'm no longer able to maintain one activity for any length of time. My Hunny explains it better than I can:

"Dorian has about an average of three good hours of energy output per day, whether it be working on a light task, exercising creativity or even socializing with other people. After a certain threshold there is a rapid decline in mental acuity and rest is needed. Short naps don't do the trick as they do with most people, rather, a period of several hours is needed to “recharge,” and this can be spent either sleeping (although it is difficult for her to fall asleep) or engaged in something passive like television watching, as long as it doesn't take much thought or creativity. Reading takes too much mental acuity during this time and will often sap her energy further.

Her level of chronic pain on a daily basis takes its toll and often tasks her energy reserve early in the day after such chores as showering, preparing a meal or getting ready to go out. After the three-hour period her mental acuity declines to the extent where she has trouble tracking names and events, and her memory fades a great deal. She often experiences confusion during this time, and will frequently lose track of her own whereabouts and any tasks that need to be done will quickly be forgotten if she is stressed. When leaving her residence or a place of business if she has been out, she frequently forgets such simple, everyday objects such as her cane, bag and/or sunglasses - needing to return to retrieve them. This happens more often than not."