Last year I was in this writers group and we were asked to write a description of our disease as a character. We were given 15 minutes and I thought and thought and was drawing a complete blank. Like how does one create a character out of PA??? I was just staring at this blank piece of paper until there were a few minutes left and then my pen started moving and this is what flowed out or maybe it was a vomit or something but I'd thought I'd share because it sort of makes sense.
"My disease character is my shadow... I decided some time ago that I did not want my disease to become my identity, but since I must live with this for the rest of my life, my disease is my new companion, my shadow walking beside me, always there but somehow separate. Now a forever friend, if you will, one that never leaves my side but, depending on the weather or day, might show up differently."
-- Rex Wiig
I believe it to be helpful to remember that while Pernicious Anemia may be a part of our lives, it doesn't have to be the entirety of our identity. Embracing it as a "forever friend" that adapts to different circumstances is a healthy approach to managing the challenges it presents. This mindset can help us maintain a sense of control and positivity in the face of the immense challenges of this condition that none of us volunteered for.
Best wishes, Rexz
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Rexz
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Very interesting exercise. It can be hard to see something debilitating as a 'friend' although I can see mine as an irritating but valuable teacher sometimes.
Great input. Yes, the best of friends can be irritating at times and they are also teachers. I think you are spot on about that. This disease has taught me so much about life, it has humbled me greatly, it has taught me I'm not invincible, it has taught me about true relationships, about faith in whatever you believe in, it's taught me empathy for others and about helping others in need and much more. Now who would teach all that if not a friend. π
My shadow is called Varjak Paw after a kitten and protagonist of a book of the same name. Varjak was so called after the character in Breakfast at Tiffanyβs.
I feel that the old English proverb of a cat is appropriate for me,
A cat has 9 lives.
For 3 lives they play, for 3 lives they stray and for 3 they stay.
No matter what life has thrown at me, I have sat or lay thinking how do I get out of this one ? I learnt patience decades ago, I know kindness is spreading sunshine regardless of the weather. Knowledge, on the other hand, is power.
Varjak Paw is not heard of but seems he's a no nonsense make something happen sort of cat. Much like us he's not likely to be found sitting around but rather taking some selfless action. I think a very fitting choice. 9 lives though...that seems limiting as I think I'm on my twelve already! π³
Wow Narwhal10, this is beautiful and a very wise Chief. Life is about choices, it always has been. Sometimes it takes an illness to make us realize that some of those choices are simply how we reflect on our world and our place within it. I will feed Wwwdot good wolf today! π
Aww thank you Wwwdot for your kind words. Some people tell me that. I happen to not think I write well at all.
You know Wwwdot. I haven't reflected on that "how I could make this disease sound moving" question too much. Maybe because it was so difficult to answer. The best answer may lie in your Wolf (I love the wolf btw!) and the Cherokee tale that Narwhal10 responded with. It's just simply choice, maybe a difficult choice to come to because our natural response is anger, why me? Etc. But positive dies factually help your body heal both mentally and physically.
Jillymo, I absolutely love the old banger! I just think of the story's she can tell! Full of character and with the right fuel, a slap on the dash and a few words to coax her along your sputtering in your way! Lovely.
I do have two cars, a newer one and my old 23 year old van that I just can't part with and I actually enjoy driving it the most.
Hi Jillymo, The old banger reminded me of this tree I've befriended on one of my hiking trails. Now this tree, an old coastal oak, is very battered and burnt from a fire 10 years ago. most all of it's bark is burnt and fallen off but the first time I came upon this tree I was somehow drawn to it. I went up and just put my hands on it to feel. After a few visits I decided to sketch him. Now please understand I am NOT an artist by any means so try and overlook the amateurish nature of my sketch and you might see some character like the old banger or even us. A while later I was hiking with a friend of mine, she is very familiar with my illness and struggles, and I introduced her to this tree and asked her to tell me what she sees. She startled me by her response, she said "I see you." she went on to say that the tree survived and although the bottom half is completely burned there are fresh leaves growing from its crown. Seems we all may have something in common with this tree.
Lovely drawing, simple yet evocative. I'm missing my favourite tree in the woods as I'm stuck indoors unable to walk. My tree happens to be dead but I was always drawn to it. I'll look for a pic to share.
Looking forward to your tree. I hope you can remember your tree in detail. Very sorry to read about your mobility. If you may take a few moments, get really comfortable, listen to this song.
And just gently, imagine you feel something touching your hand. Then slowly, you realise it is warm and somebody elseβs hand. It is me sat next to you, holding your hand, you know that I am gently saying, Iβm here for you.
Thank you π I've tried to post that tree four times now but the system is stopping me - I'm doing this on my mobile, perhaps that is the issue? π€
Very insightful, this is not what we usually read here but I feel it's what a lot of us need. Writing can be so cathartic, something that can help with the psychological burden that having a disease brings with it. But it doesn't have to be writing, talking helps too,. I saw a psychologist a couple of years ago and she helped me see things differently. The need to unburden is great and it's not something I wanted to unload onto my family; having an outsider as a sounding board gave me an objective listener worth her weight in gold!
Hi, expatkerry, absolutely the psychological and emotional burden of this illness is devastating. I too for the first time in my life had to get some help and finally sought out a therapist who I've been seeing for over a year now. You're so right about having someone to talk to other than family. For me anyway family and friends mostly see me from the outside as the person they knew before PA. Haha I now have a timeline "before PA and after PA" two completely different lives that only I understand. But one day when I was struggling my therapist told me to color. My response was a big 'huh? what?" "you mean with crayons?" "I've not colored since I was a child!" she was firm and told me coloring would be very therapeutic. So I went home and thinking silliness, I grabbed a sheet of paper and some crayons and colored a beautiful horse in a flowered meadow. A picture worthy of hanging in a most prestigious art gallery! OK don't laugh! that is a horse! well I guess it could maybe be Wwwdot s wolf?
btw coloring is very therapeutic I've found. It just seems to clear your mind and you can just scribble to your hearts content. That's of course after you get past the silliness.
Wow Rexz, thanks for sharing that. I have been struggling with acceptance of my condition. The fear and panic that I felt initially has subsided. But I get bouts of it still and reading your extract is really insightful and makes me realize that I am not alone in this. I have a friend who has terminal cancer and sheβs amazing. I ask her how she stays so positive and how she is able to sleep - when I am so stressedβ¦. She said getting her diagnosis meant she had no more choiceβ¦ she has to accept that her body is going to do what it will do but she can choose to enjoy her life and since she canβt control whatβs happening inside her she can try to focus on whatβs important. Iβm not able to do that just yet. Her diagnosis is obviously different from mine but I do admire her and marvel at her ability to acceptβ¦.. one thing that is helpful is knowing that I am not alone in this group. Thanks again for sharing, Rexz.
Hi DiNL, you're most welcome. This disease is definitely a struggle and as I say in "My Shadow" it does show up differently on different days. It's both a life wrecker and if you choose it can be a life builder. Just a much much different life. That, for me was the toughest thing t leave my other life behind. Not to forget it completely but to build a new and different life. I don't know if that makes any sense. So many things like I have this engineering company but now because of this B12 was untreated for so long, my b12 was 70 pg/ml when diagnosed, caused neurological issues I have real trouble doing simple math in my head or even simple algebraic equations. So I am leaving my engineering world behind and doing what? I don't know yet but I'm going slow and embracing the change.
Now your friend with cancer... I get 100% where she is at. I now have great empathy for people when I here the cancer word so my heart goes out to her! When I was told I had Gastric cancer my world just literally stopped, everything stopped, time stopped it was very surreal and shocking to stare death in the eye. Fortunately for me they found it early enough to excise it.
You are not alone you can read my story at rexwiig.substack.com
I totally relate to the notion of building a new life. I've always called that 'reinvention' and I was the reigning queen. I've navigated my way through adversity, illness and difficult circumstances many times in my life, but nothing remotely compares to what I'm going through now. I would give anything to see the light at the end of this endless tunnel and somehow find a positive way to go forward.
Mixteca, yeah I've also not experienced anything like this. 3 years ago I was bedridden, could not walk, hardly could talk, I was in pain, my entire right side went completely numb, I could not eat, I lost 90 pounds etc. Then to top that all I was told I have stomach cancer. I was pretty certain I was just dying. But I very very slowly came back as I did keep looking for that light. I knew there was this light at the end of this horrible tunnel I was in. Once I could walk a bit, my friend took me for a hike. That was the first time I'd ever "hiked" in my life. I was terrible I could not walk very far before resting and I was horribly wobbly. But something kept drawing me back and I think it was both the serenity of nature and the simplicity of just putting one foot in front of the other. After awhile I set this goal to hike the Grand Canyon North Rim to South Rim in one day, 23 miles total with 1 mile down and at the end a 1 mile climb up and out. Many people die on this hike each year. I trained but was not ready and missed the first year, last October, then as I was training for this year's hike I became iron deficient and was unable to train. As I was cancelling this year's hike my hiking partners told me "oh no you don't!" They would not let me NOT go. They just replaced this year's hike so we did not do the Rim to Rim hike but rather hiked just about a mile and a half down into the north rim and then turned around and went back up. Then the next day we drive around (a five hour drive) to the South Rim and hiked down the south rim about 1 mile and back. I got some of the experience which is what they wanted for me. So I offer this story of mine because what hiking made me realize is that it's not at all about the light at the end of the tunnel, or the destination, or the goal. I discovered it is about the journey. In our case the journey of life in whatever form it is presented to us. I am training now to hike the rim to Rim next I tiber 2024. I've already accomodations reserved. Will I make it? Who knows? Will I try? Yes! But if I don't make it another year I will try again, and again and enjoy each and every minute of it because that is the gift of life that I've been afforded.
I don't know at all whether this is helpful as we are all so different and each of our journeys are our own. But maybe just consider for a moment other possibilities.
I had been hiking for years and would walk miles every week. Nature and that freedom was my go to place, so seeing some of those hills from my window but not being able to enjoy them adds to the torture.
Until I pass this decline and begin to feel as if I'm healing, I will struggle to consider that other possibilities exist as I also feel like I'm dying. I've lost 10 kilos/22 pounds since April and trying hard to not to lose more.
Before this illness I would've wholeheartedly agreed with the journey being the key, what you experience along your way but right now it's that light that I desperately need to see. When that day comes, and I'm able to rediscover that optimism and hope I felt in the early months of treatment, then I will follow your lead and being a shining beacon of hope that can lift others who are where I am now.
Yep, I know exactly where you're at and that's a very hard place. So sorry you are going through this. Keep the hope. Sending well wishes for you to get past this hardest part...
I had to find a new way to describe things, after I told someone "it feels like I've got the world's worst hangover" all she heard was "...I've got...the...worst hangover" and assumptions were made π
Wonderful Rexz. That is so true. I've been walking everyday near the lake or in the woods. And I think of you when I do, going to the Amazon forest.
Does it hurt? Yup! Do I trip and fall. Yes I do! Do I sometimes weep while I am hiking? Yes I surely do. From pain and from healing my soul and from letting go of this disease controlling my life. I am in control now. I would rather trip and fall in the woods living my life than tripping and falling at home getting depressed. I do have to contend with my weak bladder but I wear a pad, or use natures toilet in the woods. I wish I had that handy little gadget men have. It would make hiking so much easier. π€£
I bought walking poles instead of using my canes. I bought minimalist shoes where they are pretty much just flat. I love them!! No arches!! EXPENSIVE π. I find that yes my feet hurt but after a while of walking it seems to get better or maybe my feet just get more numb LOLOL. But walk too much it gets bad again. Some days I can't walk well but I still go to the lake and do what I can. So I am finding my window. Also, I can just lay down in the woods and rest or sit on a bench or on a fallen tree. Nature provides resting spots at every step. I sometimes literally collapse to the ground and rest. I push myself until I have to sit on the ground, but just a few minutes of rest and I am up again. If you could see me stumbling and flopping around while I walk you would laugh, but I am walking. And the animals don't care.
One thing I have trouble with is talking while hiking. My lungs are shot! I usually hike alone but I went with a friend the other day and I had a hard time holding a conversation. And I did not rest. so I was pretty pooped. So no more talking and hiking and I have to rest. Also, I cannot forget my inhaler.
Sometimes I over do it and need a day or two of rest, but mentally I feel so much better than i have in years, because I am out in nature with fresh air and fall leaves and autumn breezes, with my camera in hand. The more I move, the better I feel. The more I sit the worse I feel. I just rest every few minutes that's all. It might take me 3 hours to walk a trail that should take me 20 minutes. But I also take my time and take photos and shoot beautiful videos to share on TikTok. I found a purpose with my lessened abilities, I found a way to be a modified me. For however long it lasts. Really Rexz, all inspired by you. Seriously, you and the amazon are in the back of my mind pushing me on. Thanks friend!
I really like your description and hope that I can reach that acceptance stage one day. Right now I'm so ill, and now doubting of B12D's existence within me, that I'd describe it as an alien takeover - think 'Invasion of the body snatchers', if you get my drift. I need my well body, mind and soul back before the insidious and torturous creature takes over completely π½
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