|February 7, 2018||Posted by Melinda under Uncategorized|
If there’s one truth I’ve learned about myself in the last 5 years, it is that I am resilient and tenacious.
I know that terms like “grit” and “resilience” are all the rage right now. How you can develop more. How to develop it in your kids. Whether it is the *it* factor that determines success versus failure.
It remains to be seen whether grit and resilience go the way of the self-esteem movement I was subject to in elementary school, but in my personal experience I credit much of my success in my goals to being able to wake up and tell myself “start again”.
And then “start again again”.
And over and over and over.
Two and a half years ago I had a mysterious loss of vision in my right eye, that was determined to be optic nerve swelling (optic neuritis). The swelling of the nerve extended both into the globe, and behind the orbit into the brain.
It didn’t respond to steroids, I never recovered any vision that I lost, and every single test imaginable (I have good medical insurance) came back negative except for some general markers in my spinal fluid that suggested autoimmune.
Over 2 years the swelling gradually subsided and six months ago I got the best news. The swelling was gone and replaced by scar tissue in the nerve which is why my brain was finally being able to compensate for the lost vision pretty darn well. Oh sure there was a loss of depth perception, and the PLR (pupillary light reflex – how fast my pupil can respond to light changes) was slower in the affected eye which makes trail running interesting….but life was moving on.
And then a couple weeks ago it started over again. The funny gummy feeling in my eye. Missing my suture tails in surgery (requires good depth perception). I closed my left eye and could swear that the fuzziness was worse…maybe?
Sure enough, more vision loss.
I had gotten a bad cold at the beginning of January, and it likely primed my immune system enough that it stimulated the process on my optic nerve again.
It was the first time I had been sick in 2 years. I don’t get sick very often, which I guess has its advantages and disadvantages. Thank you immune system but also please leave my actual body parts the fuck alone?
More MRI’s. More neuro visits. More bloodwork.
Still no answers. No diagnosis. No prognosis.
At least if I had a diagnosis I could join a support group.
I spent 24-48 hours just absolutely devastated.
Just like the first time this happened.
Last time I grieved for the loss of my sight. For the never-to-be future where I had depth perception and could run through shade and sunshine without running blind for a few crucial seconds because I’ve lost the ability to quickly adapt to changes in light.
This time I grieved not for the additional vision loss. At this point it’s just being blind or blind-er. Whatever. Instead I grieved for my not-to-be future life where I did not have to deal with a re-occuring autoimmune disorder.
Each time it has taken my brain 1-3 days to let go of the future I once envisioned, and to re-wire my brain with a new future.
Here is the new reality.
Instead of a possible one-time thing that happened at the end of pregnancy and perhaps influenced by a vaccine, I have an autoimmune disorder that will likely re-occur over and over in my future.
That’s a hard thing.
So, I start again.
Here’s another interesting thing. If we acknowledge that the adjustment process is a sort of grief, it’s not surprising when I tell you what else is happening.
I’m grieving my sister all over again. Right now the grief is as sharp and raw and as near the surface as it was 4 years ago when she died. Current grief sharpens past griefs. There’s a lot of dead bodies in my recent past. My sister is just one of them, but she was the most unexpected and the one nearest to me so it’s not surprising she’s the one most in my thoughts. I accepted a long time ago that grief isn’t linear and it isn’t a “process” that can predicted. My feelings are valid and right and it’s OK.
I recently learned something else about grief. It often comes with feeling completely helplessness and with a sense that you’ve lost all control.
Oh, so that’s what is happening. That’s why I have an almost unbearable mind-numbing and paralyzing anxiety that mostly revolves around losing pets and people (mostly my parents and my husband) to sudden deaths and that the last time I see them will be the last time, period. Before you give me some pep talk about the benefits of this mindset, I want to clarify. This isn’t a healthy “make the most out of each day and appreciate the people around it”, sort of thing. It’s a disabling distortion of it. It’s like calling a depressed person “sad” or an anxious person “stressed.”
The “right” grief can also destroy any confidence in any other area of your life you still had intact.
That’s probably why my body self-image and confidence has taken such a nose-dive I can barely stand to be in my own body right now. It’s a terrible thing not be comfortable in your own body. I’ve come so far accepting and loving the way I am and the way I look that this is a rather depressing development. Do you want to know what is my absolute life-line right now? The fact that I completed that 100 mile running race just over a year ago. No matter what has happened or is going to happen I did it, and no one and nothing can ever take that away.
I don’t want to leave you with the wrong impression. I’m going to be OK. I’m resilient, tenacious, annoying, and terrier-like. But I also want to be honest and transparent. If I can make someone else feel less alone because I’ve shared this incredibly personal thing (I know I’m not the only one with some sort of chronic disease with no specific diagnosis) then it’s worth any small amount of embarrassment this gives me to publish it. In fact, best not to re-read this or do edits…just hit publish right???? Or I might lose my courage :). *nervous laughter*.
Yep, very familiar with chronic disease with a quasi-diagnosis, and working on my own resilience right now. So not easy. But the only way forward. My circumstances are different, but still so many parallels to what you wrote. Thank you for being brave enough to share both your triumphs and struggles (and I totally realize that “struggle” is probably putting it mildly). You are awesome!
It’s hard because I just want someone to tell me that it’s going to be OK, and of course no one is saying that, no one CAN say that, and no one knows for sure that it is.
It’s nice to know that other people feel the way I feel and that this too is part of the human experience. Most of the time I feel very very alone in this as the doctor’s tut over how *interesting* my case is. Everyone has *something* and honestly part of why this post was SO HARD to write is because I kept wanting to apologize for feeling the way I’m feeling. I keep wondering if this is a minor thing that I’m blowing way out of proportion. My nature is to minimize it and convince my brain it isn’t a big deal – I’ll deal with it and move on. And then I’m just devestated when it’s not – or when something proves that it isn’t all that benign (Hi, Dr Newton? We need to get an MRI stat and schedule a follow up with your neurologist). But I don’t know how to live or accept it any other way except to convince myself that it will be OK. So in addition to feeling insecure and depressed and anxious, I found myself wanting to apologize to everyone that has a *real* problem while I’m bitching about this one in this post. But that isn’t healthy either. My feelings are valid and real. *sigh*. So I refused to let myself do that.
Thank you for sharing this. Your strength and resilience are two of the many things I admire so much about you. You have always seemed superhuman to me, Mel. Your feelings of renewed grief and that paralyzing anxiety over losing people you love are very, very familiar to me: I go through both during periods of high stress. Like you, I know exactly why it happens, but it doesn’t make it any easier to cope with. As for the undiagnosed autoimmune condition…I have so many friends in similar situations. It is incredibly frustrating when you can’t just *get* a diagnosis. And when it involves eyesight & depth perception, which you need for work, for your daily life, and in order to do the things you love most…Your grief and mental adjustment period over the new changes to your vision and the accompanying frustration of both having to deal with this worsening and still not being able to get it figured out are perfectly reasonable.
You are so brave for writing and publishing this. I just wanted to comment and let you know that you’re not alone. ❤️
I simply and honestly cannot express how much your words here (and the emotions driving them) resonate with me as with so many others……and I know you are not alone in these feelings. Thank you for having the courage to say what most of us would not be able to express in thought, much less in writing. You are one of the strongest (and smartest and most creative) people I know, and if you can make it through this darkness I know you will leave a trail of glow sticks for the rest of us. Thank you. You are more amazing than you realize! Your grief for the loss of your beautiful sister is something you will always carry, but also something that changes you in a way that makes you twice as strong as you were before…..and able to push the darkness away. She will always be with you. Know that you are not alone. And that you are loved.
I feel like you posted the bit about grieving especially for me. Yes, I am grieving the very recent loss of a very-beloved dog, and the still-too-recent loss of the best cat ever, but it’s more than that, isn’t it? Once grieving starts, it’s like you have to go back and grieve every single loss–not in order of appearance, but rather in order of importance. Which didn’t make any sense to me until I read your post.
I went back and read your tribute to Redgirl, too. I think that today I will wear red for her, and blue for Luna. And purple, for me. Thank the stars that fashion will never be an obstacle!
Love you Aarene!
A few of us in my family have an auto immune disorder and have been learning to live with it over the past few years. Yes there are moments of anger, frustration, sadness at having to deal with it but it’s much more quickly progressed into how it can be managed and maybe even resignation (but in a positive way). That’s the definition of the human spirit, I think. Keep on keeping on Mel!
I like the idea of resignation! thank you for your words. These little notes of encouragement are great.
Saw another neurologist today who is repeating the NMO testing, wants to get the optic neuritis evaluated by a second ophthoneurologist (because there’s never ever been any pain which is atypical and she wants to get a second opinion confirming it) and then assuming all that is negative/unremarkable she’s recommending a follow up with a MS specialist just because she feels like at that point she’s out of her depth. She feels that a MS specailist at that point can more confidently say yes or no. Won’t lie, did a little more crying today. I learn to push everything aside and then when I have to spend my day off in another doc office with this issue once again dragged out and forced to face it instead of ignoring it, it’s just still so hard.
I feel like this is speaking directly to me. 2 years ago I was diagnosed with ovarian and uterine cancer, and a lovely genetic mutation that 2,624 people have world wide. Since then every time I see either my oncology team or my primary care Dr it’s off for another round of CT scans and MRI’s. I’ve learned it’s all a roller coaster and try to keep marching on.