This is, believe it or not, the dog park. Well, one of the dog parks in a series at the same location. Around the fence the path measures roughly a mile. I generally do three laps in a day with Cinnamon.
Yesterday I went to this park, took this photo. And I want to also point out that there isn’t a cloud in the sky.
Although the sky was cloudless, I did not get sunburned. I did, however, come home and find about a dozen small pinprick sized “holes” in my skin oozing blood slightly. I call them “Lupus Holes”. Most of them are already invisible against my skin. A few are a little larger, and will likely leave more little white scars on my arms.
And yes, I’ll likely go to the dog park again this week.
This morning my hands are all “pins and needles”. They feel kinda sluggish and numb as well. It’s pretty classic Raynaud’s, which is secondary to Lupus. Since I’ve had increasing sun-related problems, it’s something I have to consider when I weigh the benefits of living in Santa Fe, NM vs the benefits of living in Petaluma, CA.
Everything in my life is pretty much weighed on the quantity vs quality scale. It’s not always about extending life. Living in a plastic bubble would probably maximize quantity, but it wouldn’t be worth it in terms of quality. And I’m all about quality.
More than that, I’m NOT about believing that all suffering comes from God for the edification of the spirit, which some of my friends and relatives DO believe. And one of the BIGGEST life lessons I’ve learned from Lupus is the VALUE of life: that we only have one life to live, and that it’s up to each and every one of us to make the best of it.
The flip side of all this is that I’ve also butted heads with those who feel strongly that life is THE most valuable thing, and should be preserved at all costs… but what they’re talking about isn’t life in the way I see it: it’s just existence. One of my relatives, a devout Catholic, has been promoting a petition to end “doctor assisted suicide”. Many of my relatives, far right fundamentalists, have endorsed Jeb Bush for his interference in the Terri Schiavo case. And while I agree, we don’t just go around killing sick people willy-nilly, I also believe that ultimately each and every individual has the right to make end of life decisions for themselves.
For me, it’s an urgent matter. The Terri Schiavo case had me scurrying to fill out a living will, specifically stating that in NO CIRCUMSTANCE will any other relative besides my daughters make choices about my medical or end of life care should I become unable to voice my own choices. Having Lupus, knowing the possible long term deterioration, has made me aware that suffering, dementia, and irrevocable loss of SELF could be a possible outcome of my disease, since brain lesions do occur with this condition.
Just as I claim the right to choose to walk in the warm mountain air with my dog and take in the beauty of nature, just as I claim the right to refuse the anti-inflamatory drugs which have proven risky to my cardiac health, and just as I claim the right to refuse the immune suppressant drugs that will subject me to other health issues, I claim the right to decide when my life is over.
It’s my hope that when that time comes, whether it’s in 40 years or tomorrow, that my friends and relatives will value my LIFE over my EXISTENCE. That they won’t demand my suffering in return for their religious beliefs, or their guilt, or their need to hold on to a me who is no longer there. Those are THEIR things… not mine.
I fully intend to go on living the life I have to the fullest. To enjoy the things that make life worth existing. And while I don’t live a life of folly and excess, I do recognize that with living, for each and every one of us whether or not we have chronic illness, comes risk.
So yes, I’ll deal with the Raynaud’s, and I’ll deal with my “Lupus Holes” and the days I feel too sick and too weak to get out of bed in exchange for living fully the good days I do have. And when it’s over, it’s over. I don’t need to “pay” for my life in suffering, or to justify your faith with my pain. How I spend my spoons, and my pain, is my choice and my choice alone.
The Radula Archives 