My star sign is Aries, but I have Taurus and Scorpio in my moon & rising; which one is which I don’t fully remember, but that’s not why I’m mentioning this. I’m mentioning this because if you believe in astrology even a smidge, then you know my signs make for a very volatile, passionate, nurturing, rebellious, stubborn, sexual, high libido-having, sensual ticking timebomb at almost all times. Intimacy of all kinds is a life-blood for someone like me. As a teen and young adult, my sex-drive and curiosities reached peak-experienced. I had good sex and often. I never had a huge list of lovers but every lover was incredible and matched my vigor and thirst for passionate heat. Then in 2007, PCOS(hit) *See what I did there? No...? it’s just me? Ok*, and it’s been a rollercoaster ever since.
At first it was something I could brush off; my libido being lower, my skins appearance changing, growing hair in places I didn’t want, acne galore….I went from being liberated to a person who truly was beginning to lose touch with themselves, their sensuality, and their confidence. I WAS A WRECK.
With PCOS comes many fucked up symptoms and “side effects”. Most notably either you get frequent and irregular periods, or your Menzies goes cold turkey of exacting its monthly revenge.
Just…. MIA.
Could you take a guess which one I had (and still have)? You guessed it, the monthly revenge is more like a daily revenge that lasts for upwards of six months at a time. I had/STILL have EXTREME anemia, dizzy spells, nausea, cramps, and I bleed so much I was dumbfounded as to how I still had enough blood to circulate my system to keep me alive. Needless to say….not very sexy.
I lucked out though, I was blessed in a time when my world was collapsing in on itself, to have a devoted and loyal husband who took care of me and showed me the utmost grace and patience. There were certainly other things we could do in the bedroom (which we did, trust), but often times I was so sick that my shop was closed down for repair. That was my life from 2007-2013.
In 2013 I began my blog and started a temp job as a medical assistant to get my feet wet after I graduated and completed my internship at Beth Israel Hospital. Before you know it, on August 1st, I woke up and couldn’t lift my head off of my pillow. As bad as the PCOS was and still IS, it did not compare to what I was about to experience. I had no idea it could be so bad, no idea what a world of hurt was about to rain down on me (not just physically…but existentially). My illness and subsequent disability stripped me inch by inch. Mind, body, and soul.
Yet and still, my (let’s face it) amazing husband took it like a champ. I fell apart and he picked up the pieces. But as amazing as he was and despite everything that transpired thereafter, he’s still human after all. So in 2016 (and over 30 hospital visits, 6 lumbar punctures, 10 MRIs, several ER visits, and being 80%bed ridden…plus an ongoing battle with PCOS), it all came to its first of many heads. During the decade-plus I’ve battle with my disability and all of the ailments, there were several peak-level meltdowns. This was the first time rock-bottom was looking more like the top from where I was….from where WE were; my husband and I.
Finally! In 2017 (I’ll explain in another post what my experience w as a fat woman of color and all of the “shituations”/ shitty encounters with doctors), after advocating for myself relentlessly for years to get the “diagnosis” (because I still….STILL….can’t get an official diagnosis), I was “diagnosed” with CSF (Cerebral Spinal Fluid) leaks. The symptoms are brutal as FUCK, again those details are for another post, and needless to say, not just the “sexy”…but the sex was at an all time low.
And guess what? I’m still in the throws of this chronic condition. It isn’t always chronic for folks afflicted with it, but as per usual, I (including my body) am an over achiever. If there is a one in a million chance…that’s me…I am that one. Plus, my condition is idiosyncratic. No one knew the why, the where, the how of this shitty illness; not even after all of the test and doctors visits could shed the much needed light.
And through all of it, my hubz stood firm in his support and had as much patience that could be had. We fucked when we could, and when we did we made sure to not “waste” it. I can’t even count the numerous times I wasn’t entirely in the mood to, had what we spoonies call “manageable pain”, and still got down with the get down. Physically it took a toll as I’m sure you could imagine.
In the moments consumed with lust and desire- fire, I felt nothing but pleasure; occasionally a little discomfort if we were doing the most. But the aftermath was like entering the 7th circle of hell. My headaches would worsen, my vertigo went into overload, I’d become nauseous and at times could barely move to get out of bed. In my mind this downward spiral was worth it (and still is) because I LOVE SEX, & intimacy…..and I can’t exist without it. Plus it was/is important to me that we fulfill each others desires. We make room for those days when I’m too ill and he’s too busy with work or studying, but we vowed to never neglect our intimacy needs no matter what. We would carve out the time. We would make it work even if we had to go slow and steady (which sometimes we both thoroughly enjoy).
It’s funny, not HAHA, but….interesting; I’ve always been an exceptional lover (still am) but I had to learn how to adjust to the changes that came with disabled-sex. It wasn’t always smooth sailing, but we adjusted; in physicality, mindset, expectation, etc..
Communication becomes paramount, it’s the difference between a transcendent/ transformative experience….and a nightmare. While we’re at it let’s just add patience and grace to the list of valuables. Knowing when to slow it down and pace yourself is also key. Last but not least, trust. You NEED to trust your partner with your feelings, shortcomings, inabilities, insecurities, and you must be able to voice what works for you in the moment at any given moment without feeling bad about it. I’ve never really had a problem in that department. I’m quite blunt and upfront, I’m an open book and I’d rather feel the varying sting intensities of the “uncomfortable” convos for the sake of betterment. It’s a necessary discomfort. I welcome it. My husband is not like me in that way and struggles to express himself in varying degrees; he’s improved over time because I encouraged him to grow, be confident, and say shit with his chest. I brought out his fire and he extinguished my flash grenade of a personality when needed. We balance each other that way.
And in those moments of vulnerable hour long convos about desire, fulfilment, and needs (existential, love language, intimacies, etc…), we discover(ed) so many things about ourselves and each other. That’s when I learned all the ways my illness affected him. I learned how helpless he felt. I learned how much pressure he was under to provide, to fulfill, to balance support and self-care. I’d be lying if I said the realization and conclusions reached over the course of the years of long talks hasn’t hurt from time to time, or made me feel guilt & shame; let’s be honest, those feelings are like breathing air for us spoonies. I just do my best to never make him feel like shit or like he’s a bad person for having his feelings. It’s incredibly important that he remain honest and authentic with me at all times. I have always given him that space.
I don’t want to completely speak for him here, I have no interest in misrepresenting him or stealing his voice, so I decided to interview my husband. We do plan to make a video elaborating on all of this and posting it on the YouTubes, but for now…a VERY candid interview is what yawl gonna get.
Q) What challenges have been presented to you since your wife has been sick?
Has it affected your libido?
A) There have been some emotional challenges. I was quite angry in the beginning, and didn’t want to accept that she was sick. Although I’ve now accepted it to some extent (can’t knock me for hoping); which took a few years, I’m still annoyed that she is sick. She doesn’t deserve it. There is also the challenge of not really knowing how to help. It’s especially tough when your wife is 100% self-reliant and doesn’t really ask for help unless she’s backed up against the wall….sometimes she will wait until she’s pushed through the wall before she asks for help. I use to get angry at that, however, I understand it because I can be the same way. In addition to that, of course there is the financial challenges. Being the primary-bread-winner while living in New York City is tough; It’s even tougher while you’re trying to start a business, and tougher still when the doctors she’s been seeing can’t even diagnose her.
I also find it to be challenging to not say the wrong things to a disabled person, it’s hard as a able-bodied person to always be cognoscente of limitations when you have very few. It’s so easy to accidently ask her to do something that she can’t physically do…it’s a bad habit that I’m still trying to fix. I actually did it two days prior to me typing up this response.
Last but not least, it can be really difficult to not see her as a patient. I was always looking up new “cures” for her to possibly get her life back. There is a very thin line between seeing your ill spouse as…well… a spouse and seeing them as said patient. What ends up happening, at least for me, is that I subconsciously started viewing her as somewhat of project, one that I really love and care about and want the best outcome for. This isn’t all bad, but it can get to be excessive, borderline obsessive. *A tip for anyone in this situation: Remember to date you significant other, touch base, court them, make them feel like a person (because they often don’t feel that way), and often times they just want some sort of normalcy back…soo help them in that regard. I thought I was not only showing her love, but the kind of love I thought she needed; it was the complete opposite….maybe not complete (I’ll cut myself some slack). You love them so much that you spend hours, months, years, looking for a cure, never giving up. It can be tough to take a step back and allow them to just be. And remember in and through all of this, give yourself some grace, it is NOT easy to navigate…especially in the beginning.
As for my libido and how she affects it? It hasn’t changed a damn thing, I still look at her and attempt to feel her up all of the time (every damn day). If anything as time has gone by, I’ve grown more attached, more in love, and more attracted to her. She is every bit the fantasy and I’m a lucky son of a bitch.
Q) Has it affected you sex-life? In what ways?
A) I’ve grown to accept it, and it literally doesn’t bother me even with my fluctuating libido that can be ridiculously high sometimes. We can’t really have sex as often as we’d both like. Sometimes we go so long without having sex that when we do get a chance to have sex, it feels like we’re having sex for the first time. Which doesn’t suck. The excitement is heightened and it makes me wanna make a good impression. .
Q) Have you had the convo with your significant other (how you feel, sexual changes, change in intimacy, accommodations and adjustments now that they’re sick)? How did they react?
A) Yes, we spoke about it. She, as always was quite understanding. She understands that I’m only human…she always takes that into consideration; this woman is the most emotionally intelligent person I know.
Q) Did you have hard times in your relationship that were centered around their illness? In which ways?
A) Yes. There were a few times where my wife was in a lot of pain because she did not have the medication that helped ease the pain (Thanks to her doctors not supplier her with meds that actually worked). On many occasions she would be up all night screaming in pain, crying with snot bubbles and drool and all (rocking back and forth to attempt to self-sooth). It was quite difficult listening to her in pain because there was literally nothing I could do to ease it....listening to her scream in pain is a trigger...when i hear her in pain I immediately get upset at the medical industry for their lack in effort and care when dealing with her.
Q) Has your sex scheduling changed in any way? How?
A) I don’t really do sex scheduling, never did. I just follow my instinct and read the room.
Q) How do you compensate for the days when intimacy needs to take place but they don't have the spoons?
A) Heavy groping, cuddling, and foreplay. And when she has zero on the spoon-o-meter, I self-soothe. However, Most of the time I’m so busy that I don’t even think about it.
Q) Have you adjusted the way you interact or perform during intimacy?
A) Yes, kind of. I try to be really careful with how I toss her around. I try to be really careful with her back. We do a lot of side positions. if you can imagine the variety of side-based positions and any position that requires her to lay down, we do it. I do love when she’s on top riding, but we can’t really do that as much anymore. The cowgirl position is one of my favs, woe is me.
Q) What do you wish would improve about those interactions that you feel are due to your wife's illness?
A) I wish she felt good enough to ride me more; she does, but who doesn’t want more of a good thing?
Q) What have you lost due to your wife's illness? Which ways?
A) I Lost the opportunity to take my wife out on dates (Movies, Dinner, etc...). I miss going on walks and our gym routine together too. Other than that, not much really.
Q) What have you gained?
A) I gained somewhat of an understanding of what her life is like and what life must be like for people in her position, or worse. I wouldn’t be able to fully understand because I’m able-bodied. Interestingly enough my love for her has increased dramatically. With sex not really being in the picture as much, I was able to see HER even more….its really interesting if you think about it….its like when COVID hit…breakup/divorce rates went up because couples, whether they were marriage or not, were stuck in the house with each other for months and months they ACTUALLY got a chance to know each other…and it turned out they realized that they couldn’t stand one another; maybe the realized that all they had was sex (or that they needed more over all).
Not me and my lady. Nineteen years and still ticking…although we have problems, we’re best friends before anything else; we’re always laughing…I wear that shit like a badge of honor.
Q) Do you still find her attractive and are you still turned on by them?
A) Yes. I still feel her up. There hasn’t been one time, unless we’re fighting, that when she walks by I’m not looking at her bodily-goodies.- She’s got that table-top action goin on….if you know what I mean, and her sex appeal is unmatched.
Q) Do you have any regrets or resentment?
A) Resentment? Sometimes (not towards her…just towards the situation), the universe is cruel. Regrets? Nope. You see, In the beginning stages when I realize that it was going to be a long-term thing, there were times when I had resentment. When you have your plans ripped away from you, it’s a shock to the system. Life pulled the rug right from under us and we fell bareback into icy waters. It was a whole new shitty experience. I wasn’t as emotionally intelligent then as I am now. So I was more selfish and self-centered….didn’t see anything except the life-plans that were ruined…I didn’t want to re-figure things out. It was fucking frustrating. If she wasn’t the way she was, highly emotionally intelligent, we probably wouldn’t be together because I learned How to be more emotionally intelligent because of her…I learned to have more sympathy AND empathy (and the difference between the two).
Q) What was your relationship like prior to her having her first attack? How has it changed thereafter?
A) Before the attack she was super human. She did everything, I mean EVERYTHING, and she was everyone’s everything too. She cooked, cleaned, ran every errand known to man, went to school, worked, etc.… She gave 150% to every task and every relationship, she was the most reliable person I’d ever known. After the attack, much of her “ability”/functionality was stripped from her and she no longer was as luminous, reliable, and her cape became significantly more tattered if you know what I mean. But, who she is/was as a person…only got better, if that is even possible. In no way am I trying to reduce my beautiful wife to a list of tasks and her ability to do them well or often, obviously she’s way way more than that. Anyone who knows her knows how lucky they are to be in her circle. And she gives her absolute all with everything she does, it just so happens that sometimes it’s less often and with considerable strain. She gives her all even to her detriment. Those things haven’t changed. I admire her. And to be clear, there is very little she could do…or not do that would change how I feel about that.
Q) What is one thing you want your wife to know that you've never said or need for her to know more often?
A) You’re my favorite person in the fucking world…When ever something happens, you’re the first person I think to tell. I appreciate all that you do and I’m proud that you continue to push through the shitty cards you’ve been dealt, your shitty pain, and your shitty health issues. You’re the definition of a superwoman; yes, I know Woman are superheroes already, but you’re another breed of superhero altogether. You’re in pain everyday and put up with my foolishness for years and years, yet you still love me. Truth is, I’m lucky you’re still around.
