*Wait! Did you read Part 1? Please do so, otherwise this post will seem a bit confusing.
Okay, where were we? Yes, we were making out. Myself and Mia, that is. Or had I gotten to that part yet? All right, let’s back it up for a minute. When Mia first arrived there was hugging and hand holding, but soon she was little spoon to my big spoon.
This was about six months ago when I was only able to whisper with the majority of my communication achieved by tracing words on someone’s hand, or more laboriously, using an alphabet spelling system which would require an entirely separate blog post just to explain. I’ll spare you.
Somehow Mia and I were able to communicate our affection for one another, proving that love is a language that transcends the need for translation. Mia eventually confessed that she expected me to be debilitated but not to be so alert and engaging. It was good to hear. It made me happy to know that with everything MECFS has taken from me, it couldn’t take my personality.
Each time Mia left my room she would return a short while later and say she wanted to stay in my sheltered world indefinitely. Other visitors have expressed similar feelings, saying it was actually comforting to be in what Mia called my “cave.” But to me the cave was not comforting. It was, and still is, a cell in which my body has stagnated but time has continued on. And that is absolutely terrifying.
Mia and I spent last Valentine’s Day together. I was able to use my phone to order her a bunch of goodies — candles, chocolates — while she got me a succulent and a lovely card. That night she slipped into bed with me and we kissed like our first time back in 9th grade outside the girls’ locker room. I quickly found that the chemical release triggered by her affection made me feel better. Like I had with Sasha, for a short time, I felt free of the pain and sickness, of the trauma tainting the last decade of my life.
Before going to bed Mia came into my room to say goodnight. We made out and it was then that I finally realized something was undoubtedly different about her body. Her chest was noticeably larger than it was in high school. Eventually she pulled down her top and revealed her breasts which appeared to be augmented and had piercings, although the latter I had already seen in photos she sent me.
Now, this is probably a good time to point out how bizarre it was to be so incredibly sick and still have a sex life, albeit stunted. Instinctively I expected to be able to speak and chew food before I could kiss or have my sex drive return. This anomaly brought a flood of emotions and even more questions to my mind. Could I catch another virus from Mia, or could she get MECFS from me? Would the exertion of intimacy be too much to recover from? And if it wasn’t, would the pleasure of intimacy be worth the physical repercussions?
I started to feel guilty, remorse for indulging in a bit of pleasure that ultimately proved so taxing and probably detrimental to my recovery (at least in the short-term). It felt like I was using energy that could otherwise go to sitting up or maybe even getting out of bed, but this was flawed thinking. Even if I had saved all my energy I still would not have been able to do sit up or get out of bed, there were just too many forces working against me like an extremely impaired circulatory system or unrelenting muscle weakness. So I did my best to ignore irrational questions like was it wrong of me to kiss Mia? Or should I not have spent so much energy trying to nurture a relationship with Sasha? At the time these relationships were the only things I could use my energy for that brought me any joy. It was fettered joy, but joy nonetheless.
I’ve always been one to give things or people I’m interested in all of my attention. I become obsessed and addicted very easily whether it’s exercise or with a pretty girl. In this way I suppose I’m lucky I’ve never been keen on drugs or alcohol. And while I’ve never stood outside a girl’s house at three in the morning in the pouring rain, I have devoted far too much time and energy to women that do not reciprocate, a pattern that has continued into my sick years.
And while I know my health should come before any other person, it is difficult to keep in perspective. The emotional and physical exhaustion of trying to carry on a relationship has been worth it, because if nothing else, it provided a distraction from my ailing body. And ultimately I remembered to trust my body. If I was able to sit-up, or even try to, I would. In the meantime these relationships were healing, even if they didn’t feel like it at the time.
When Mia left it was very emotional for both of us. We traded articles of clothing — she took my boxers and I kept her sweatshirt — then she was gone. The next day she sent me this text message:
I hate that there will be no one like you. I mean maybe if I am lucky, but I’m not a full optimist. I’m scared and pissed about it. I don’t want to be close with anyone at this point but you. But I’m trying to be cautious. It’s a relationship I’ve never had before so forgive me if I’m not giving you needed space. You came into my life for a reason. I’m trying to figure out why because at this point I feel it’s a tease. I don’t think you feel far off on that. Correct me if I am wrong. I don’t know what to do about it. I’m not asking for answers I am just talking so don’t try to make sense. Thank you for your love. I realize this is a lot. I’d squeeze you hard if I was there.
After that things began to really get emotional. I started conjuring up farfetched plans to fly her to the nearest airport (two hours away) and have some family member pick her up so we could be together for a few hours before she had to return home for work. I was desperate and starving for affection and she was dealing with intense emotional issues alluded to in her text messages. But these imperfections by no means diminished the love we had for each other.
Still, the enormity of the emotions between us were not only palpable from hundreds of miles away, they were enough to crush anyone, especially a sick person. Our relationship became strained when she didn’t come back to visit. She still hasn’t and as time has gone by we have only become more distant, recently even estranged.
A few weeks ago, after we had not talked for awhile, Mia randomly sent me the following text message:
Hey you. I’m sorry if I’m not being supportive or available or however you want to put it. I’m trying to focus on myself and I’m trying to clean up my cave. Just know I care about you deeply and want you to be happy.
I just can’t give you what you were asking for.
Our estrangement has introduced many questions about my situation. As my health continues to improve I often wonder what kind of relationship, if any, is realistic. Just as I imagine Sasha and Mia have had to weigh what is realistic in their own right, walking a blurred line between friendly affection and romantic affection that often seems impossible. I imagine the fact that I’m sick complicates the situation for them. I know it seems complicated to me. But how do you tell a sick guy “I’m just not into you,” especially after your actions have shown otherwise? I suppose they could say “it’s not you it’s me,” but let’s be real: it’s definitely me and I’m too intelligent for clichés.
But it’s not like I’m hitting on them at a bar. These are old friends or ex-girlfriends I’ve known for years, and still I’m not trying to seduce them. Quite the opposite, in fact. I’m usually very hesitant to even let them see me so vulnerable and I rarely initiate any intimacy. They usually make the first move, and once they do, well that’s a different story. From then on I’m an equal, if not more aggressive participant. It usually starts very innocuously — she will sit next to me, grab my hand, and we’ll talk. Then her hand will end up on my arm, then my chest, then she’ll ask to give me a hug, and within an hour she’ll be in bed next to me. And that’s when the gloves come off. I can’t be expected to keep my distance with an attractive woman in my bed, especially one I’ve been intimate with before. But still I wonder what forces brought us to that point. For me it’s loneliness and a starvation of intimacy. For her, I imagine it’s any combination of things which must include feeling sympathy for me. This became clear when one female visitor said, within a few minutes of arriving, “I just want to lay down and hold you.”
I’m sure it’s genuine attraction and the affection is real, but what’s the impetus behind such advances?
Is sympathy the impetus for the affection I receive from women? If it is, then my illness most certainly is the impetus them abandoning me so quickly. I doubt that sympathy is the only impetus behind the unorthodox relationships I’ve been having with women while I’ve been sick, but even if it is, so what? Everybody needs love.
*Before I move on from the topic, believe it or not, there is more to tell. But perhaps I’ve exhausted the topic? I’ll leave it up to you. If you want more leave a comment below, something to the tune of “Hey! Where’s part 3?,” if not, I’ll move on to something more lively like my 21st birthday.
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33 thoughts on “Sex and Sickness Part 2 ”
I’m in – for (reading) part 3! I am not the kind of person who had to read “50 shades of grey” – so I still haven’t.
Your writing about this ‘subject’ is very important for people to realize, that as a patient, showing your affection and receiving someones affection can make you feel free for a moment. Not trapped in a sick body, but flying like a feather of a bird which just left the cage where the bird is still waiting for his chance to leave that cage someday.
Thank you for being so honest. Respect for writing and showing your vulnerability.
That’s so sweet thank you!
“Hey! Where’s part 3?! Let’s have the dirt!
You got it. Thanks!
Although we only know each other by name or as that guy/girl from high school… I’m intrigued by your story. You honesty throughout this journey is so admirable. Please keep writing because it’s seems as though writing is a gift you were given. I have never been one to like to read, but your posts have me wanting to know more. My thoughts and prayers are with you at this time.
Hey Emily, I mean accidentally TPing your house in 8th grade and leaving behind a bag as proof counts for something right? Do you remember that? Thanks for reading and for your kind words! Keep in touch.
Wow ! that was a long time ago, good memory! I vaguely remember that incident. Who’s house were you suppose to TP!? that’s hilarious. crackin up over here. I mentioned to my mom, and she was like “ummm… I kinda remember that… we were TPd so many times when you were little, I lost track! LOL.”
I’ll tell you all about it. It was me, Ian, and Jake and we thought your house was Heidi’s. Which may have been my fault but Ian left the bag behind with his name and phone number on it. Haha. I think your mom called his mom and I woke up at his house and she was laughing. I was so confused. We got better after that.
haha I figured that it was Heidi or Dana’s house you were trying to TP. So funny. Good times, good ol’ TPing days. and darn Ian… way to expose the culprits ! 😉
I would love to read part 3, part 4, part 5…
I have no experience with trying to form any kind of relationships (other than friendship) while ill, it just seemed too hard. I’m not sure I have the strength for anyone to come into my life who would then possibly leave. In that, I think you’re very brave.
I’d love to read more of your thoughts on relationships while sick. In other situations, some people seek out someone who is in a similar situation to them- this is quite common with disability. I wonder if the exhausting nature of ME would make it too hard.
It sounds like you have a lot of really interesting thoughts on this subject, please keep writing about it if you’re able to.
I think a lot of ppl with MECFS go your route. It’s easier in some ways. But ppl come and go regardless of whether you’re sick so to me it just feels worse now. Thanks for reading I’ll for another, 5 might get boring though.
Hey there! I just wondered if you wanted some real answers to those questions as to why your female ‘friends’ jump into bed and then become emotionally/physically unavailable to you? It’s not for charity, you are not the sympathy vote, it’s detailed as all emotions and female interaction is, it’s along the lines of nurturing.. There was a period in my life before my illness and before my ‘entitled and career driven’ stage, where I felt the need to nurture men/boys who I thought needed saving or were broken and in those moments, I too was vulnerable but given distance and perspective I fled.. There’s a lot more to that theory if you want to talk sometime let me know.
Also, in my sickness experience, it is very possible to find love and have a relationship when sick with ME/CFS and Fibromyalgia with a healthy partner. How do I know? I’ve been there and it was at one of my lowest points when we met and I could barely move. Maybe, I got lucky? Or maybe it’s possible for all chronic illness suffers to find the companionship they seek..
Sorry if I’ve rambled and you find this all very irrelevant but if you find it helpful, let me know as although I’m working on releasing my blog, this is months /years ahead from where I’ll be starting, ofcourse, at the beginning 🙂
Interesting. I definitely think there’s a nurturing aspect to it. That’s not what surprises me. The abandonment does. But both make sense in hindsight. Thanks for sharing. You can always share your thoughts here.
The abandonment, I’m familiar with that too. I had a partner before I was diagnosed & we continued the relationship once diagnosed. The illness changed things for him, the security of what lie ahead & whether I would ever be the same fun loving carefree woman again.. Which deep down he knew I wouldn’t recover. So, he abandoned me. He gave me many reasons, superficial but eventually he admitted abandoning me because he was afraid of the unknown future with me. This seems to be a reoccurring issue with people who suffer severe chronic illness, whether they met their partners before or after the sickness, they see the vulnerability and a lot run. For women (I’m not sure how old you are Jamison?) but biologically women have preprogrammed ideals of getting married, having children and so on and so forth. Hence, the abandonment, they feared for their unknown future with you. It was the same with me.. Stuck in bed or my wheelchair is not what that partner had in mind for the rest of his life..
I hope this makes some sense to you? It’s a hard topic sex & love with a chronic illness but everyone’s input to your writing has been wonderful.
Cheers & thanks for the chance to share
If they can’t love you in your most vulnerable and sick state, Maybe they don’t deserve you in any other state. Unconditional love is just that–it doesn’t see a physical state as a barrier– and ultimately that’s what we want in a partner right? Someone who can really see us, despite external conditions, and who aren’t afraid to sit with us in our pain. There aren’t guarantees for any of us, and even finding someone else in perfect health doesn’t mean they are susceptible to losing it; we’re living examples of that. No one is safeguarded from pain or loss. So what then? What does that partner who went after the “perfect” person do when they lose their perfection? Their health or success? Stay or go? If it’s the right one, or at least if it’s a compassionate one that loves you well, they stay, because you’re still you. Maybe the love between you changes, as all love changes and evolves through our lives, but it shouldn’t end because of illness. People who meet us while we’re sick are just seeing what we’re all vulnerable to– and the fearful ones don’t tend to stay. I think seeing us reminds them that we’re not actually in control of everything and they can’t deal with that reality. Maybe in that sense, the illness is helping us weed out the ones who Havent come to terms with the truth about life (and death) and the illusion of control. Getting sick teaches us this lesson early on 😉 Poor health is a shitty thing and unquestionably will make certain things really tough, but so what? Everybody has their stuff, and it shouldnt mean an end, and I think with the right one, it won’t.
Such good insight Judy! Thank you so much for sharing your insights. I agree on many levels. It takes a special person to be with a sick person and an even more special person to be sick.
Part 3! Part 3!
Ok. Deal. Haha
I demand part 3 and your 21st Birthday!
So demanding haha. I feel like you know what happened on my 21st.
Tus reflexiones son siempre interesantes; eres libre de escribir, te leemos con respeto y mucha comprensión.
Thanks! That’s great to hear! Being introspective is therapeutic for me.
Looking forward to part 3 …….
Coming soon! Thanks for reading!
Hey! Where’s part 3?
Hey! I know you. How are you?
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I’m late to the party, I know. But if there is a Part 3, I must not have gotten to it yet. So here’s my stake for Part 3.
Your vulnerability moved me and moved me to tears. Of course I’m always the emotional one and can cry at anything and everything. Anyways, in a world that treats vulnerability as a weakness, thank you for being strong.
Well thank you for being so sweet. I haven’t done a Part 3 yet, but I did do Part 0 as a prequel. Thanks for reading, it keeps me going!
I’ve spent most of my night reading your blog posts and I’ll be looking forward to reading Part 3 when it comes out.
I admire your strength to keep going even when it’s hard to do. You’ve inspired me for sure.
I’m glad I stumbled upon your blog. Probably becoming one of my favorites to read.
I’m so glad! Thanks for taking the time to read. It means a lot.
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