I’ve got to remember that the view through the fence is beautiful. But dagnabit! Some days I just hate the fence. The fact that the fence is there. That it interferes with the view. Some days the fence is just a fact of life and other days I think the fence is really ugly. Sometimes the fence has a gate I can pass through. Other days the gate is locked and I don’t have the key. And somedays I can’t even find the gate, and I can’t be sure that I will ever find it again.
The fence, of course, is my illness. This Common Variable Immune Deficiency that hems my life in, sometimes completely surrounding me with no way out. I will be hooked up to this IV machine for a day and a half every 3 weeks for the rest of my life, unless at some point a scientist figures out a way to perform gene therapy so that a surgeon can replace my defective gene. Which isn’t, in fact, science fiction. That therapy is on the horizon, but may not be actually fully developed and practical for decades. If ever. It all depends, as all things scientific do, on funding. That treatment would probably take the entire fence down, and I wold be able to live my life like a normal person. But in the decades of meantime…… there is this darn fence. And I really wish it wasn’t there.
I’m sitting here in the hospital hooked up to an IV, and will return at the crack of dawn tomorrow to be hooked up for the entire day. And then I will feel crappy for several days, and hopefully feel better along about Wednesday. I did super well in France, and even did well initially once I got back home, even though my infusion was 4 days late due to traveling. And then somehow, my immune system decided that it really didn’t want to work correctly, and I got a mild infection (which responded well to antibiotics, thank goodness), and I started not sleeping well, and………… Well, I just haven’t felt well for several days and I want to feel better. I want to be able to do stuff. Like go to the grocery store, and take my dog for a long walk. With my camera. I want to be able to find a gate in the fence. One without a lock. One that i can push open and go back out into the world, and be able to see the view without looking through a chain link fence. Even though the view through the fence is beautiful.
Zebra's Child 
I hope you’re doing ok and starting to feel a bit better. This is a really powerful post; your metaphor is so apt and the photo lovely. Kia kaha (Maori for “stay strong” in case I haven’t already said that). Cheers, Su.
Thank you so much, Su. Yesterday was a particularly difficult infusion during which the pain went from being under control, to….. not so much. I took a small amount of additional pain meds, which helped. I didn’t take the full amount, as I was scheduled to sing at a wedding of a friend today. Even though we were a small chamber choir (and there were thus other singers), so I could have called in sick, I really, really didn’t want to do that. It was the wedding of a gay friend who sings in our full choir, and I knew how important it was to him and his partner for each of us to be there and sing. Too many meds would have meant that I was too wiped out, so I tried to strike a balance.
During difficult infusions especially, two things in addition to medication help me get through: my wonderful nurses, and the knowledge that I have friends and family who support me, think of me, and for those who have a religious bent, pray for me. I shall hold close your wishes of kia kaha. Thank you!
😦 I so hope you’re feeling better today and managed to sing at your friend’s wedding. What a wonderful gift to give!
I did indeed, and the wedding was glorious! A full church, both sets of family, a wonderful choice of music, both choral and organ, a vibrant reception afterward, and so much joy and love. What a wonderful gift for those of us participating to receive!
I relate so much to this, but can’t hate the fence because the fence is mine.
I think you are farther along in the process of acceptance than I am, Jay. I still view the disease as something external that arrived and sort of planted itself inside me. I guess I still think of it as a weed that I wish I could pull out, rather than just being an integral part of who I am. I’m so busy trying to not be defined by it that it may have slowed down my acceptance. Most days it’s just part of who I am, but when I get sick, or have a particularly difficult infusion, I wish I could just go back to before my immune system collapsed. And those are the days that I hate the fence.
Oh for sure. It’s hard not to go there, even while we’re busy trying to kick butt and not let it define us. Because it still kind of does, even if that definition reads more like ‘does a crazy amazing job of being happy and productive despite a stupid debilitating disease’. I’ve been 12 years without a pain-free day and I can hardly remember what it’s like to be without it because that’s almost the entirety of my adult life. I wish I didn’t have the fence, but it’s here, it’s chronic, it’s forever, it’s not going away, so we’re all just doing our best to integrate it into our landscapes, right?
xo
Very, very true. Most days I do a good job of integrating it into my landscape and realizing that the view through the fence is still quite beautiful. But there are definitely days…….. not so much.
And my favorite part of your comment is “…does a crazy amazing job of being happy and productive despite a stupid debilitating disease.” I think that definition fits. 🙂 Thanks.
Dear Hannah the Zebra.
I like you photo and metaphor. I will be sending positive well being brainwaves your way. I know that you will be able to see a gap in the fence to walk through for a free unobtrusive view of the flowers and roses. I had a relative that had cancer. She had to go into the hospital to do treatments every week. She had a hard time as well but had gone to a painting school when she was younger. Before she got sick she had been painting four or five paintings a year. Even though she was loosing her physical strength towards the last year or two she kept painting. She poured her hope and memories and love for her family into painting. I wish for you to see the positive light of every day. Keep on seeing the little things in life and I know you will persevere to have better days.
Sincerely,
Sam Sutlive.
Thank you! Positive energy definitely helps! I love your observation that “She poured her hope and memories and love for her family into painting.” That’s what I try to do with my singing, my writing and my photography. It helps keep me focused on the joyous things of life.
Dear Hannah the Zebra,
I am glad you have art forms that you like creating. I believe that they are a really good way to express ones’ self, whether it is relieving emotions or just trying to make art or make a message through the medium of art.
Sincerely,
Sam.
If we each had an art form, I believe we would be kinder to one another.
Dear Hannah the Zebra,
This is for you.
Regards and Best,
Sam Sutlive.
This is beautiful, Sam. Thank you!!
Dear Hannah the Zebra, I am glad you like the roses.
Regards and Best,
Sam.
Positive light and love to you, Hannah!
Always gratefully accepted! Thank you. 3>
Ummm… ❤