AUTOIMMUNE DISEASES GALORE (Part 2)
THE PERSONAL TOLL
THE CAREGIVER’S BROKEN ARMS.
Here’s my current autoiummune disease list: Rheumatoid Arthritis, Interstitial Cystitis, Hypothyroid, Diabetes 2 and then Chronic Pancreatitis. And I also have the tentative Lupus Dx sitting in the wings. I always wonder if it all tied to Lupus. Anyhow…I was just diagnosed with Diabetes. I’ll try the new meds and come up with a plan w/ my Dr. in about a month.
…the news did not shake me the way i would’ve thought. Now I think it is all hysterical. I mean, it’s literally gotten absurd. I finally feel like this is all so much that I will prevail – I have to - from where I stand now it can only go 2 ways: 1: UP (the only way it will go) and the other is death – which I have no control over anyhow – and it certainly is no way to live out the days i do have left on Earth…so I am choosing to now laugh in the face of adversity. You know that great scene in Forest Gump when Lieutenant Dan is legless and sitting on to of the boat during the hurricane? That’s me – except for that I am now finally past the storm saying I won. I know that might sound odd- how could I feel like I won if I just found out I have another f–ed up disease – but, it’s because NONE of it has had the power to take me down. NONE of it! I’m stronger than all 5 chronic diseases and I’m sure if another one got added to the list i would find the strength to feel the same way.
The disease (or rather these diseases) have already taken EVERYTHING away from me that I love and care about. I am not even exaggerating…. My family couldn’t hold itself up through it, my own father has chosen to be angry at me for it, my relatives find themselves in the dust simply saying “poor girl”, old friends disappeared, jobs vanished, my career and company fell off the map, and my true love imploded from the sheer stress of the lifestyle this disease gave me. Over the 7 long years of this disease I know what it’s like to have nothing but myself… and that’s not even myself with energy – that’s myself not being able to move out of bed.
Everything I have now in my life I’ve had to expend thousand of times more energy to keep and maintain than I even knew I had in me. For example, several old friends came back into my life and are now worth more than all the world’s gold. Another friend or two came into my life after they opened up to tell me they also have a chronic disease – then we’ve bonded over our shared experience. And then there’s Jax who deserves his own paragraph at the very least.
When I read about these lovely romantic moments my mind always drifts to lovers I’ve had in my life or ones I’ve fantasized about on-screen. Like a lover holding my hand as they walk me into a candle-lit bathroom for me where they’ve been running a bath for me with bubbles and scents. As I slip my robe off he helps me climb in while checking the temperature with his free hand. He sits as his smooth voice fills the room. He’s making me laugh about some event from his day, a moment he wont’ be sharing with anyone else. I don’t have to even get creative when i remember this image played out many times through my precious time with Jax. I loved his attention and care in making sure I am okay, better than okay. Overtime his mind became clouded, just as mine did, with images of hospital gurney’s, needles, and the stinging smell of alcohol. The bubble bath gave way to conversation about medicines and doctor appointments. It was impossible to not loose ourselves with worry over these details. We would have strategy meetings to cover the list for the next appointment when I would be going alone. I’d rush to phone him afterwards partially to share the news and partially to be comforted with his voice. His melting, soothing voice.
“You’re so fragile and breakable” became our deepest wound. He became consumed with worry. How could he not? I was the most important thing to him and I was wasting away in our bed, our bed – or would it be my death bed? How could we make love in this same place, same room, same house where I spent endless hours sleeping away the pain?
We had glimmers of hope, moments where we could see a light down a tunnel, but it was never the end of the tunnel and it was becoming clear that it never would be until a day came when my light went out and I was forced to travel down the tunnel on my own. It was the farthest place he’d ever want me to be, yet it was a possibility and so it played heavy on our minds.
We had fun, even in the darkest days, but it was brief and temporary. If I laughed too hard the pain would be too strong so joy became a double-edged sword. And since we are human there were plenty of useless moments where we’d try to pretend we were dealing with normal circumstances and talk about the most important subjects as if we had no weights holding us down. ”I mean we haven’t had sex in 6 months – don’t you think there’s something wrong with that? I just don’t think you’re attracted to me anymore and it hurts me”. Talk about hurt!! How could I have such daggers come out of my mouth? How could I push all the seriousness aside and try to pretend we were having a normal relationship? Over time the 6 months gave way to a year and then a year and a half and then we all lost track. ”Would it kill you to pretend you want to touch me?”
The signs were all there. It was going to break apart loudly. I ignored every one of them. Instead I choose to lose myself in a video game. Night after night I’d try to be the highest scorer when all I really wanted to do was bridge the gap that now sat between us like the Grand Canyon. How could we ever go back? We’d go to therapy and learn new ways of getting or giving pain. At that point some reaction shows that at least we’re still alive. But that pain lingers in the air all week and the sessions come too fast to take any actions on the positive steps to take. How can this damage ever be repaired? How can we go back?
Soon enough the world outside forces the door open and both partners need to escape each other just to breathe. This can’t be saved, can it? All the love in the world can’t save what this disease has taken away from me.
Jax lost himself by taking care of me. He’d tell you he had no other option than to take care of me. I relied too much on him over time. I lost the girl I once was – so self-sufficient always out with friends or at some work function or another. I made the dagger sharper by working long hours trying to hold on to at least one part of my life. But it was all a wash. If I kept holding on I would die.
It happened so suddenly. Jax moved out. He moved into my then closed office one door away from our apartment. I didn’t care if it was a curse or a blessing – I didn’t want him to go away. But he’d lost himself with worry and despair. It didn’t matter that I was getting stronger for once. I was healing finally. I was getting proper care that he’d help me navigate. All of his efforts were helping – couldn’t he see that? Couldn’t he see I needed him? And that was it. I had come to need him - as a caregiver – I needed him – and it was entirely unavoidable. There was nothing, no matter how many times I played it in my head – nothing I could have done differently. Yes, I pushed too much to want to have a child. I pushed too much to want to have fun when it was impossible. I wanted to be with the Jax I fell in love with – but his door was closed. Of course it was open for business like hospitals, ER visits, emergencies, but it was closed for repairs and renovations. Except for one major problem – I was out here - in the freezing cold -and I wanted us back. How do I get US back?
It’s been almost a year now since Jax moved out. He still lives a door away. He’s got tons of new friends and a social life, plans, dates, deadlines. He’s got his apartment set up with his style printed on it. I love his style, his taste in things. I’m truly elated for him. I want him to be so happy and free from worry. Rarely but sometimes I get jealous of his network of pals, but I want him to be happy and not worry about life and death matters each moment. I’ve never wanted someone’s joy so much. (well, in fact I want true joy for anyone and everyone that’s reached their hand out to help me). I don’t want to hold him back from experiencing life in its less stressful forms.
It’s taken me this entire time to get to the point where I am starting to build. I’m building up new friends, new plans. Each set back means the process will probably take my entire life. I dream of having a circle of close girl-friends here. I dream of being able to be of help to others. I tried dating for awhile. I found it to be too confusing and painful. Do I tell them about my hurdles or keep silent about it? Do I let them find out slowly over time? I just couldn’t keep up with the blows to my self-esteem. I’m not ready for that now. I’m back to square one- the basic steps.
Jax and I spend a decent amount of time together every week. It’s a fine balance between being too much for Jax. His personal space and time is still so raw. I edit out what I really want to say. I have to - a few times I tried to explain that my love for him will never lessen – but I have to remind myself to let him go – to let him be free. He helps me in so many ways that it makes me cry with joy over how lucky I am to have a true friend like him. When i touch his arm i still get that electric shock – that feeling of pure energy that drew me to him when we first met. I see him now as I did then, but with even bigger eyes. It’s like – I’ve seen into his soul and know I will never find a more beautiful human being than him. Sure, sure he’s flawed - like we all are – he can sometimes crawl so deep in his shell he claims he’s being selfish. I only wish he saw himself the way i see him. he’s not selfish – far from… he’s sensitive and protects himself as his number one priority – selfish or selfpreservation?
I know I very well may have lost my chance of being with him forever. Even though I didn’t make any stupid mistakes when we broke up (we’ve always been thoughtful and helpful to each other since our split). I’ve been a whiney baby sometimes out of jealousy for not having my own group of pals but never when it comes to him going on dates (not sure how often he’s done that and its none of my business frankly). In fact i’ve hoped he has gone out with some women so he can see how special our love for each other is). I haven’t played any games, nor has he. It’s been a really straight forward situation. He’s stated his boundaries and I, mine. I’ve taken my health path back into my own hands and taken it very seriously. I’ve been vigilant about what I eat and drink. I’ve been devoted to taking care of myself so I can continue getting stronger. And Jax’s made it clear that he gets uncomfortable if I mention anything about finding him attractive, hot, or otherwise desirable - so those are all out.
But then I crumbled -completely totally crumbled. It came at the tail end of our 7 week black out where we didn’t see or speak to each other for 7 weeks. I was deeply depressed and had lost 2 jobs as a result. It was all crumbling. Being with Jax was no longer remotely in reach and I had given up hope. It no longer mattered. I had lost everything that’s ever mattered to me.
Where do i go from here? Where would you go? Do I move? stay? pledge my love out loud in ways I never had been allowed to before since our split? give up? wish i was dead? i became confused that I hadn’t died already. after the will to be dead finally quieted down there it was – i was still completely in love with Jax. I mean it’s absurd. I’m a relatively rational career-woman. i owned my own company for 10 years. How could I not see the writing on the wall to just move on?? MOVE ON!!! And now, Jax had seen me at my very worst. forget the bed-ridden stuff – that was thrust upon me – now i was cutting my own body up and wishing to be dead. (well, the wishing to be dead wasn’t new – it used to crush Jax when i would talk like that).
Through it all Jax has proven he’s there for me. This one fundamental truth of our story - was the one thing i feared so much. I thought he’d always been dying to get away from me. We are so stupid, us humans! So now, I don’t know what happens. I try to touch his arm or shoulders or chest when possible in casual conversation. I ask for his advice and remind him how valuable it is to me. I am myself around him and speak openly about all topics save one – us.
I know I have to be out of a relationship right now so i’m not suggesting we move back in or even get back together right at this moment. I have a lot of healing i need to do on my insides. I’ve given up the control i once felt i needed on my life -i have become totally powerless. i’m no longer measuring the day a success if i got a certain workload done. i can hardly accomplish anything these days so that would be a waste. i’m learning how to rely on other people so the burden is not all on Jax. I’m trying to grow my network again so I have a support system. But with all of the work I’m doing on and for myself I still have one constant feeling - I am deeply in love with Jax.
He might not ever come back to me. We might not ever be wrapped up in each other’s arms again. I might not ever feel his lips on mine again – I know I’ll be okay as long as I know he’s happy or on the path to happy… but i’d like to say - for the record – flaws and all I will always be deeply in love with Jax. I wish I could tell him my deep regret for all of the absurd things I’ve said or done. All of the rules i had in place that I thought were required to keep life together. But all I can do is live my life and hopefully show by example that I am so different then the woman who was too sick.
Jax and i have plans for the immediate future – we both take care of my cat Guvnor who spends a week or so here and then there. We’re planning a skydiving trip and a night of pot brownies. We eat out about once a week and he’s asked me to join his book group. But as of yet he’s not comfortable having me go out with his pals for a night on the town. i’m too thick to understand why, but i respect his decision. i stay in touch with his mom and pop and he’s recently helped me out by talking to my mom for a good solid hour. But this chronic pain is not just physical. it’s a deep wound that shattered everything.
love Sasha. xoxoxox.