Wow, anita, I just re-read your response multiple times and want to give you a hug. You’ve taken so much effort and cut right through the heart of the issue here… It’s incredible that you’ve voiced the very things I’ve been thinking of. I’m going to reply to some of your quotes here now, and thank you so much for the detailed reply!

– can you indeed see yourself possibly spending the rest of your- or her life- in the role of a caregiver?

This is one of my concerns, that I will end up as a caregiver, and while I could see myself doing it with joy within the context of marriage, I’ve come across too many stories where the caregiver spouse ends up harboring a lot of pent-up resentment, and I don’t think I’m of a unique, holier breed.

“She struggles with fine motor control, balance…my girlfriend’s cerebellum ataxia… the brain damage is permanent“- does she currently struggle with significant fine motor control and balance dysfunction that will make it unsafe for a baby to be held by her?

We believe so, yes. She frequently has jerky movements, and spills drinks or food all over the place. I did bring this up, while we were talking about the future, and she dismissed it saying she could wear a baby harness or something of that kind. As far as fine motor control, it does take her a while, bless her heart, but she can write slowly, and can even cook (operate a knife and other sharp instruments). As for balance, she cannot stand on one leg which is something I’ve noticed, and can’t run either.

– if her medical condition deteriorates, the relationship will change, will it not, from that of a couple to that of a caregiver and a care-recipient?

You are absolutely correct, and I know this is something that I shouldn’t feel bad bringing up because it is my responsibility right now to ensure if I am able to provide what she might potentially need as a care-recipient. Right now, I consider myself very independent, and value a partner who can accomplish tasks on their own too (not that we wouldn’t help each other!)

Notice her response to your inquiry about her medical condition: she subtly accused you, did she not, of being calculating, insensitive.. cold-hearted for considering pros and cons. From attentively reading and re-reading your words, I see that your logical approach is wrapped in a very warm, empathetic heart.

Is it possible that she is so cared of losing you, at times, that she has moments when she resorts- or is in the process of resorting- to guilt-tripping you as a way of keeping you, as in suggesting (not in an upfront, honest way), something like: if you leave me, Sam, it would mean that you are a bad person! ?

You hit the nail on the head here, anita. She did ask me if that was a dealbreaker and I had to quickly dismiss the question as she became distressed. She told me that she could get cancer after we get married, would that mean I would leave her? I don’t think that’s quite the same as it’s not something that’s known beforehand.

She also acknowledged that she has abandonment issues which is what you have divined in your reply here. She does not respond well to breakups or rejection.

One other piece of info that I was able to glean was her annoyance at her exes who asked if her condition was genetic or if she could hold a baby. I can certainly understand why that would make her upset; and she said she appreciated me helping her out with tasks she struggles with (like getting heavier plates, or extra napkins, etc.) without probing too much into her condition. Perhaps she felt that this insinuated I would step into the role of a caregiver effortlessly, and as required if necessary?

– what will your story be if you marry her: will it be a story of Honesty, Transparency and Deserved Trust, on your part, and on her part.. in sickness and in health?

Look for clarity and answers in the story as it is now before you commit, if you do.

This is a very sobering piece of advice, anita, and I appreciate it so very much. She hasn’t had many good experiences with romantic relationships and it makes sense why she started talking about a future together and a marriage very early into our dating journey. I know I’ve treated her well, as she ought to be treated, and flipside of that is, I deserve honesty and deserved trust like you say.

[quote quote=433693]Yes, you have quite a difficult life ahead with ataxia. People who have this usually have it full blown by age 45. There is little to no chance of recovery. Sad. And there is incredible stress with living with someone who has this. Realization of this becomes stronger as it progresses. Often the partner learns of the reality of how hard it is to deal with, much later. I am impressed at your words of dedication to this woman[/quote]

Thank you for sharing this with me. Could you tell me more about how you know about this condition? Honestly, the part about it getting worse by 45 is a little concerning, I’ll admit

Just wanted to clarify that my girlfriend’s ataxia condition isn’t genetic. The only concern we have about having kids is that she’s currently in her early 30s, which might make it more challenging for her to get pregnant or experience complications during pregnancy. Thanks for the response, Helcat!