We pulled up to the parking lot, slid into the disabled spot, and J activated the ramp. (Common. Rote. Standard.) He unfastened all of the tiedowns connecting my chair to the vehicle, and stepped back so that I could navigate my exit. (As usual. Like always.)
This time however, we had a witness. I mean, we often have a witness – the van makes a lot of noise when it deploys the ramp and the sounds tends to attract gazes. This witness was just vocal. (Uncommon. Nonstandard. Weird.) Our witness that night was parked beside us and made herself known by exclaiming how wonderful the van was and how lucky I was to have it. It was so cool, she said, the way I could just drive my chair right up inside and park up front. I agreed with her, of course; commenting on the marvelous freedom it affords me, and we spoke for a little while about how it was important to me that I was able to ride alongside the driver seat and not have a rear entrance van – making me effectively cargo. We spoke also about the minor problems I have had with said van (this was before the brakes melted), about the lengths I went to in order to purchase it in the first place, but mainly we had a pleasant chat about the marvel of modern engineering that this man was and how much freedom it afforded me. She then turned to J, beaming, “and you’re so lucky to have a good husband to help you.”
…We get that a lot.
I didn’t correct her. We never do.
To be fair, he used to be my husband. Now he’s my best friend. Because of that, there is a very easy intimacy between us, a lack of distance that typically exists even with the closest friendships. He hugs me a lot, we have excellent non-verbal communication between us, and it’s easy for an outsider to mistake our relationship for that of a married couple. We live in a touch-starved society, and here is this guy who can so casually rub my shoulders or hold my hand when I am in an emotional crisis, who is cutting my food for me and escorting me everywhere, so OBVIOUSLY he must be my husband, right?
But yes, I agreed – I am so incredibly lucky to have him.
I am jealous of people who get diagnosed with ALS who have a spouse, if I’m being fair and honest with myself. Although intellectually I understand that no relationship is guaranteed, and sometimes marriages don’t last through a terminal disease, most of them do. Till death did they part. Having someone that intimate with you, that connected with you, and consistently present for you – I am so incredibly jealous of that. You have a built-in partner through all of this bullshit. Not a guaranteed slave at your beck and call or anything, but the security of having someone who will of course be there to fetch you a glass of water when you need it, to help you to the toilet when you’re at that point of helplessness.
((I absolutely know to the core of me that if I had been married when I was diagnosed, I would totally have given my partner the option to walk away forever and pursue a different life without dealing with me dying – even though I know there’s no way they ever would. Probably. I gave all of my friends the same option. Some of them took it, but most of them didn’t. Dealing with a terminal disease sucks for everyone.))
Even though your primary medical caregiver should never be your spouse, there is a lot of automatic care that is assumed with being married to someone with a complicated disease. I don’t have that built-in automatic assurance. I don’t have someone sleeping in the bed beside me who can help me turn over at 3 AM. I don’t have someone sharing the same space as me to whom I can turn for petty little things and I do not mind asking, because they are already around and the thing I need is so minor. Instead, I live with my blind mother who can’t tend to a lot of those stupid little things I’d like done, such as to open the window blinds for me or light a candle or move these five books to a different bookshelf. It’s kind of a major undertaking for her, and impossible for me. I can call her into the room to take a dish away, but I’m lacking someone who would be sitting beside me anyway and would automatically be taking my dish with his or hers. A built-in partner to help me navigate all the fuckery.
What I do have however, is this amazing human being who has stepped up to provide a lot of the day-to-day shit that needs doing, without needing to be asked. When my planned caregiver left me, J stepped in with no complaint and an easy grace. And I am very very lucky in that, since we used to be married, I am very comfortable with him and have a built-in intimacy that I simply don’t have with any of the rest of my friends. I’m not embarrassed at the end of the day when he drops me off at my apartment to ask him to unhook my bra for me before he leaves because it’s very simple for him to do, very very difficult for me to do, and the dude has seen me naked a lot so who even cares. Eventually I won’t have a choice but to develop the same intimacy with us a lot of people, be they friends or paid caregivers. But for now, he is the one I turned to when I woke up in the middle of the night and couldn’t get out of bed to pee fast enough and suddenly needed someone to change my sheets. After I spent the rest of the night sleeping on a towel because it was 4am for fuck’s sake. I was embarrassed to ask, of course; it’s not an easy thing to tell another human being that you, a grown-ass woman, wet the bed last night so thank God for mattress protectors but could you please change my bed for me? But since he is my ex-husband, that intimacy already exists to a certain level (I mean, the man held a bloody barf bag for me after I had post-tonsillectomy nausea soooooooo everything else is easy-peasy after that, surely), and it was very organic for us to slide into this new development together. It is much easier to admit weakness to someone who has lived with you for 10 years and seeing you already go through some serious shit. We survived divorce; dealing with this terminal disease together is practically a piece of cake compared to that.
I am so lucky to have him.
I love him more than… Probably every other human being on this planet if I’m being honest. He is the best one.
As of this last Valentine’s Day, it was 10 years ago we were married. I’ve known him nearly 20. He is my best friend, my primary caregiver, my confidant, my buddy, my chauffeur, my personal assistant, my first and true love. I am a very, very lucky woman to have him in my life, to have been able to maintain this level of friendship even after our romantic relationship fell apart. I personally don’t understand being able to have an intimate relationship with someone for 10 years of your life, and then just walk away from it when that relationship goes wrong and never speak to that person again. It’s unfathomable to me. Literally no one on this planet knows me as well as he does. Not everyone can do that though, let go of the sense of failure and hurt and maintain a positive relationship afterwards. For me though, there was literally no other option. Even though the romance part of it didn’t work out, I love him to the ends of the earth and with every fiber of my being. That love is just different now.
I guess what I’m trying to say is that J is pretty neat. I like him a lot.
I just felt like I should state that for the record.