So, as you can tell by the nearly 2 months that have elapsed, there is just no way to sum up how great it was to see my cushie friends. "These are my people." They get it. WE get it. There is so much less judgment and so much more kindness. Chris (film-maker) was fairly baffled by how well we knew each other and how we just melded into a group, like we'd been friends for years before...and yet had only ever chatted on facebook. It was like we knew each other very well --because we did. I've hesitated to use the words "real life" because for many of us, our online time IS our real life connection to the world and to people who understand what we're going through.
I cannot express the gratitude I have for my fellow Cushies and the technology that allows us to truly support each other. I look back at how guilty I used to feel about my time spent online. I still have a tinge of that because I KNOW what is most important and want to spend my time doing those things, but I physically can't, so I try not to let it get to me now. I'm still playing a daily survival game, and I just can't go there or I'll lose my will to fight. And if I lose that, I lose it all.
But, back to a few years ago, people made very rude comments and I did internalize it for a while...Maybe I still do. You see, I was (still am) so tired I couldn't get up and "do" things. When this all started, holding my head up to watch a tv show was draining. I'm better than that now, but barely so. And when I first really lost function, I was hurting so badly because I had lost my independence, lost those things I did for "fun" and joy, lost the ability to care for my home and children the way I wanted to, lost my trust in doctors, lost my trust in my body, and even lost the support of my church congregation, all while feeling physically and emotionally like I was sick as a dog. I didn't need a guilt trip, I needed support. I know this now, but everyone treated me like I was just fat and lazy (and rumors were spread that I "just" had gestational diabetes, which is a far cry from the illnesses I actually WAS suffering from). I was told to think positive thoughts and it'd all go away...and that I was making myself feel sick because I was being negative. I can see that conversation like I'm still in it. When we asked for help, we were first blamed for needing it, then refused it. I still find it hard to believe what happened, despite having lived through that almost 9 month nightmare. No, we didn't react well to that. Who would? It was about as far from support as you could get.
So, 3 years later now and we're coping fairly well, though nothing has changed. It is a daily battle. I still am stuck on a chair unable to do anything (rather literally), we still don't have the local support, and I'm still spending a great deal of my time on the computer. I get an average of 2 non-family visitors a month, and they don't understand.
I realize I shouldn't blame others for not understanding and not wanting to understand. It's horrible, ongoing, complex, and depressing. Few can relate. It's VERY common to lose most of your friends and even family support with chronic, debilitating illness. Few want to feel the emotions associated to empathize, or spend the time and energy required to maintain that friendship. Heck, it depresses and confuses me. I have to live day to day to stay free of the ominous grey mass of everything I'm dealing with that threatens to smother me. I'd heard that "one day at a time" phrase so often, but I can say I truly understand it now. I have to pick my medical battles because I only have so much energy to spend towards setting up appointments, seeing doctors, getting treatment, testing, etc. Some days I'm so sick I would happily check myself into the ER for the night (month?) if I thought they'd have some clue how to treat me and help me feel better. (And, would you believe, I HATE going to doctors?) Instead I do what I can to make it through to bed time, and hopefully get some sleep. And usually, I can start the next day with a clean slate. A very battered and bruised slate that still feels like crap when it wakes up, but a clean one. I survive it all simply through faith and because of my husband and children...they are my motivation to keep going. They are what I fight for.
But HOW do I keep fighting? My friends' support. They get what I am going through; they've been through so much of it themselves. They don't question the validity of my suffering. They simultaneously offer support through empathy AND possible solutions to the current issue (be it pain, nausea, dealing with other people, depression, anxiety, a how-to plan, etc). Sometimes they simply join in with the commiserating! And, because that support is so complete, even that lifts the mood, as backwards as that sounds. I don't have to explain myself. I don't have to defend myself. I don't have to pretend to feel better or do more than I should because their expectations are too high. They look out for me. They help me through my roadblocks. They are beside me throughout my days, my nights, my ups, my downs, my lowest of lows, my insecurities, my fears, my joys, my heartaches, my shortcomings, my healthcare providers' shortcomings, my "punny" nonsense, my brain atrophy, and above all they help me not to lose myself in this black abyss that threatens to steal all that I am and can be...because they see me. ME. Not my disease, not what I can or can't do, not what I look like, not my job title or how I contribute to society, not the facade of "I'm fine" that most see. I am fine. But I'm not. It's both; they understand. They can see through it all because they are there with me. We talk about everything and nothing. I'd be lost without them. I'd be lost without my family. I don't know if I could keep going without either.
When I'm ready to give up, I remember what I'm fighting for, and my friends help me do the fighting.
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