I have been away.
I have often thought of how to begin this blog again after a long hiatus and then more time would pass and there it stood waiting for me to speak, write, and reach out.
The reason for my silence is the same reason for beginning this blog. Living with chronic illness permeates everything we do. It is the scaffolding of which we build each day. It determines our daily plans, what we take on, and what we leave unfinished. As I dedicated each day to doctor’s appointments, physical therapy, medication changes, and rebuilding my life after a health storm, this unfinished blog provided comfort knowing that it was a place for me to return.
As the months passed, I was forced into long stretches of bed rest, breaking from work, my passions, the world, and my voice. This is the cycle, after all, of the chronically ill. It is a sequence of retreat and victory, of silence and stories, and of mining the telos of one’s spirit. What incites us to account our narrative to others relegates us to silence in other moments in a life lived with chronic illness.
I have to admit that at first my silence was “put upon” me. I was so engulfed in pain, fatigue, and just getting through one hour after another that I had no desire to communicate about the latest health trial. Yet, resignation turned towards choice, as I again reimagined and redesigned a future. It is a truth we face when dealing with an incurable disease that we must rewrite our future story after it is continually malformed by our bodies.
The poet Carmen Tafolla wrote: “I was the fourth ship. Behind Niña, Pinta, Santa María, Lost at sea while watching a seagull, Following the wind and sunset skies, While the others set their charts.” This post is dedicated to the future, to the reciting of a livable future, and to exploring the why in a life filled with medical chaos.
Illness is an invasion of identity. Since living through surgeries, a nine medication regimen, and too many medical procedures, I have searched for an explanation, a pathway, and a satisfactory answer to why. Why did this happen? Why me? I have done everything from pretending that the illness part of my life is nonexistent to studying the mechanisms and pathologies of the body; nonetheless, illness continues to lead its assault.
To live with a chronic degenerative disease one must constantly engage in meaning-making. Why? It is because illness is unremitting and untrustworthy. A medical crisis can topple all that you have worked towards in a mere blink.
Therefore, we are professionals at reconstruction and rebooting our future. Often times, it is a future tinted by professional and personal sadness. Professional goals wane under the weight of the body often causing an individual to lose their job or relinquish ambitions. Illness demands a personal reimagining of what family looks like sometimes forcing an individual to move in with a family member who subsumes a caregiver role or surrendering the dream of having a family and experiencing parenthood.
Illness fractures identity and makes us feel less complete because completion is continuously interrupted. I believe searching for the “why me” is not out of anger, jealousy, or pity but out of the attempt to take all these futures interrupted and find fulfillment in a life that no longer looks like the life originally intended.
Chronic illness mandates that the individual who lives with it coat themselves in an extra layer of depth because it is a permanent state and the human mind has forever raised questions about immutability.
I spent the last year in renovation. It’s frightening; isn’t it? There’s a trauma processing that must be completed in order to move forward in life.
When I was first diagnosed with endometriosis and a chronic pain condition due to a spinal injury, I had no idea nor was it explained to me that I was going to have to go through a continual cycle of insecurity. I was oblivious to the fact that I was going to have to live my life in a temperamental space.
It is of my opinion that chronic illness patients do not fit easily into the usual experience of loss because our loss is not consistent. The future is unpredictable and so our stories are discontinued and resumed and this process repeats infinitely.
Thus we are forced to mourn each time and rebuild our futures anew holding our breath again that the house will not collapse with us inside. Our narratives remain disjointed and so without any desire for it we gain a level of complexity that is difficult to communicate and share with others even those we love the most.
I don’t know if there is a way to rid ourselves of this anarchy that illness brings. What I am still learning is that inside this chaos we must pledge to coming out of the other side of it. We must promise to find our voice again.
I have been away but now I am returning. Each one of us can say that.
Although it may appear like a small triumph, I am proud of my return and I am proud of yours too.
***
The above post was written by my friend C. over at her blog Para Las Fridas.
I have re-posted it here with her permission because it is quite honestly one of the most amazing accounts of life with chronic illness I have ever read. From the moment I first read it, I was struck by the way C. managed to put into words aspects of my own experience that I had been afraid to face, much less articulate to myself.
Like the feeling of having lost time, of living according to a completely different calendar than everyone else. Of knowing I’ve disappeared from the world, for months and years at a time, while life has marched on unrelentingly for everyone else.
The feeling of resurfacing, of returning, without knowing if it’s an illusion, or for how long I’ll be allowed to stay before disappearing again.
The feeling that I’ve become an expert at remaking my identity: after each disappearance and returning, constructing meaning again as best I can, assembling the pieces that make sense, filling in the gaps in a way I hope no one else notices.
C.’s words give me the courage to come on my blog and tell my own story, when I’m afraid it’s been too long, or no one will be able to relate.
I am not the only one who feels this way; I am not the only one who has disappeared and returned.
***
You can check out the rest of C.’s writing at Para Las Fridas! It is simply incredible.
I also wrote this post outlining some of posts C.’s site that meant the most to me.
Lastly, you can also see what C.’s up to on Twitter.
tlohuis
December 24, 2016 at 2:49 amThis speaks volumes to me. I just returned, myself, after a 2 month hiatus. It’s good to be back. I’m going to try harder at keeping up with my blog, but as you know, chronic illness has it’s way of interfering over and over and over again……………I’m going to try and that’s the first step. Got right on and did 2 posts in 3 days. Doubt I can keep up at this rate, but it’s a good start, anyway. Glad to see you’re back. haven’t seen you for a long time. Take care. Welcome back!
tlohuis
December 24, 2016 at 2:49 amThis speaks volumes to me. I just returned, myself, after a 2 month hiatus. It’s good to be back. I’m going to try harder at keeping up with my blog, but as you know, chronic illness has it’s way of interfering over and over and over again……………I’m going to try and that’s the first step. Got right on and did 2 posts in 3 days. Doubt I can keep up at this rate, but it’s a good start, anyway. Glad to see you’re back. haven’t seen you for a long time. Take care. Welcome back!
sunlight in winter
December 24, 2016 at 11:59 pmHi there! I’m so glad the post resonated with you. It’s good to see you back again as well– looking forward to what you have to say!
tlohuis
December 30, 2016 at 12:13 pmHi. I hope you’re doing well. Don’t you worry, I have plenty to say………..I’m not doing so well, as of late……………about just sick and tired of everything………….there is no joy in this miserable life of mine…………………sigh………………….I sure hope your’s is much better than mine. 🙁 I have to leave and go have some lab work done. I don’t want to go, but I’ve canceled so many times already, I better not do it again….even though, I am still sick…………..uggghh………
sunlight in winter
December 30, 2016 at 5:35 pmI’m sorry to hear that! Hope it went okay.
Jo Malby
December 27, 2016 at 4:39 pmLoved reading this, as I do all your offerings. No matter how frequently you are able to write, they always resonate and speak volumes, amazing lady. Sending spoons and much… 💗
sunlight in winter
December 28, 2016 at 11:06 amThanks so much, Jo 🙂 Hope you are doing well too!
Stephanie K. Hansen (@aTigercubby)
December 28, 2016 at 7:22 amOh my darling, I do swear the Universe put this soothing balm of words in my path just now when I needed to read them, to be reassured, reminded, that there are others like myself who ‘disappear and return’ from the public eye, whose words fall silent and rise again, and that there are people glad to listen when I come back. *exhale of relief*
After 26 years of chronic illness and a few years of severe chronic pain on top – degenerative is what is says it is, unfortunately – I have learned to view my life as unending, one long story, no ‘building and rebuilding’, that even the still and quiet times are part of the same story. It saves me from feeling as though I have to ‘start over’. That was a myth. I merely continue on with more energy and am more productive when circumstances allow…it is not the same as “starting all over again”. Instead of “rebuilding”, I have learned to view the changes in what I do as just that…changes in direction, changes in what I focus my energies on. It is much easier on the mind and the nerves.
In a world where all of the business and marketing books and literature, every meme and article declares with devout assurance that the ONLY way to succeed is to be diligent and UTTERLY CONSISTENT, it has felt as though I am truly screwed before I begin, as though I should just not even bother trying. I’m certain others in my position have felt beaten down by those same notions. However, with nothing to lose, I tried to succeed anyway, and did. Repeatedly. It helps if we define success for ourselves. Set manageable goals. For me, it was to work in my chosen field for as long as I could until I couldn’t anymore, until my health stopped me. And I had a GREAT time! And yes, I also succeeded. And each time I was able to return for any period of time, I was remembered well for the quality of my work and for the passion with which I worked when I could.
But this last time away because of illness and pain has been the very longest yet. And I am having a hell of a time getting up the spirit to come back. Wondering, “Who will listen to me now?” I am too ill to return physically. I have to remain a virtual presence in my field (artist). Will that be enough? Will I have any credibility? I have fear. So much fear. Fear that no one will give a damn anymore. Too long away. Too little to offer…no big fancy shows with wine and cheese the way of my peers. Am I finally altogether finished? Finished off? But I’m still here! I’m not done yet! Just…of depleted reserves, physically.
Thanks to your words – or your posted words, I guess – I will at least try. And I bless you for that. Thank you for helping me forward for this next little while at least. For helping me take one more step. Then I’ll decide how to get through the next step, whatever that one is.
Steph
sunlight in winter
December 28, 2016 at 11:15 amHi Steph, thanks so much for your comment! I think you are completely right about the way we struggle against the cultural expectation that we persist unrelentingly, and never give up, even for a second. Much better to have compassion for ourselves, to forgive ourselves for sometimes “disappearing,” and set realistic goals. I also really liked what you said about viewing your “returning” as a refocusing and redirection of energies.
Yes, I definitely can’t take credit for C.’s words, but I am so glad they are resonating with others the way they have resonated with me! I often return to this post (and many of C.’s other posts on her blog) when I need inspiration.
Wishing you the best of luck with your next step!
tlohuis
December 30, 2016 at 6:16 pmHi there. It went okay. I hated every minute of it. Driving there, waiting in line, it’s so windy out, I about got blown off the highway. I then had to go to Walgreen’s and get my water and all my non food items, shampoo, soap, you know, all that kind of stuff. So, I was out and about an hour and 45 minutes. I had 2 cases of water and a few bags of my stuff, my purse, my book, my planner, my back pack with my pump that feeds me, to carry upstairs. Up 2 levels from the garage. I made 2 trips getting it all up here, but I had to leave one case of water in the car, in the garage because I about collapsed after carrying the other one up, as my 23 year old son stood there and watched me struggling to get up the 2 sets of stairs and not even bother offering to help me……….sigh…………….I swear…………………I got up at 8 a.m., showered, and all that business. Then did a therapy session online because I knew I wasn’t going to make it to 2 appointments and I have been feeling very, very nauseated………….So. for me, that’s a lot………………………….needless to say, it was straight back to bed when I got home. I’m trying to decide if I’m seeing a bunch of floater’s or does your website have these tiny white spots that randomly fall down the page??? If it’s my eyes, I kind of need to know…………………It doesn’t seem likely it would be part of your website because it’s just real random, it’s not constant or anything……I was seeing this the other day. Can’t remember if it was here on your blog or someone else’s. My Ferratin has been very low at 6.9. It should be well over 20. It’s odd because I have hereditary hemochromatosis and my iron is usually high………………………..so, I went to my Hematologist’s office for only lab work today, and I’ll go back next Friday and see the doctor and go over my lab work. If I need a phlebotomy done, as a result of what my lab work shows, I’ll have that done after seeing the doctor. I was hospitalized when they noticed my Ferratin that low and did nothing about it. It could mean internal bleeding or I’m just not getting enough iron in my diet. I can’t take any iron pills or supplements because Hemachromatosis is Iron Overload……………….Well, that’s my lovely and boring day. Just another day. Hope you had a much better day than I did. Take care. 🙂
sunlight in winter
December 30, 2016 at 6:19 pmOh gosh! I’m sorry about that. Yes, at this time of year WordPress offers the option to have “snow” falling on your blog. It’s not your eyes!
I’m sorry to hear about what you’re going through but I am glad you’re keeping on top of your treatment options!
tlohuis
December 30, 2016 at 6:22 pmThanks for clarifying that it’s not my eyes because I do see floaters sometimes..lol 🙂 Have a great weekend and an even better New Year! I’m glad you’re back and I look forward to following your blog to see just what you’ve been up to. 🙂
periwinklepursuits
January 7, 2017 at 5:48 pmThank you so much for sharing that, I felt it deeply <3 Happy New Year!
sunlight in winter
January 7, 2017 at 11:36 pmSo glad it meant something to you! Happy New Year to you as well!!!
1wisewoman1
February 1, 2017 at 1:07 amBeautiful. Love the sentence, “we are professionals at reconstruction and rebooting our future.” So true. Thanks for sharing.
sunlight in winter
February 1, 2017 at 1:51 amI know, C. has such a way with words! Glad it resonated with you!
1wisewoman1
February 1, 2017 at 1:53 amFor sure! I’m glad I found both of your blogs. Thank you!
baylou
April 3, 2017 at 7:24 pmReblogged this on laramaynard.
baylou
April 3, 2017 at 7:24 pmReblogged this on laramaynard.
Bedridden, a Poem—& a Returning | The Princess in the Tower
July 13, 2017 at 9:30 pm[…] “It is a truth we face when dealing with an incurable disease that we must rewrite our future story a…. To live with a chronic degenerative disease one must constantly engage in meaning-making […] because illness is unremitting and untrustworthy,” says para las fridas. […]