Hi Birdsong

I’m sorry to hear that your girlfriend has ataxia. I had a look online and it is quite a serious condition. You are right to not take it lightly. I think that you’re a wonderful soul for supporting her and being open to navigating the difficulties of her condition. She must be a very special person! You clearly love her a lot. 😊

I wonder if you spoke to your girlfriend about this? Does she have any opinions?

I think you did a really good job of explaining things here but I don’t know how it would go over with Asian parents.

It might be worth going into a similar level of detail about her condition as to here because looking online is quite alarmist. There is a lot of variability in life expectancy for the condition. Some are wheelchair bound or die very young. Some fair a lot better and live into 50s and 60s. So really it is a case of discussing her particular difficulties and concerns as opposed to leaving it to the imagination which might cause you some trouble if they mistakenly believe she could be in the worst case situation and she’s not (hopefully). I think being realistic and practical about the future like you are is a good idea. Well done on being so mature.

I would add that it might be a painful topic for your girlfriend to discuss. It is not just a concern or a health condition. It is her life and future. These things are can be quite scary. I wonder if it would be okay to ask your partner if it would be okay to get more information about her condition from her parents purely so she doesn’t have to feel distressed about discussing the condition? Or perhaps your parents could ask her parents about more information about the condition? I’m not sure what is culturally appropriate?

Whilst you are not planning on leaving her. I’m sure that the idea of being rejected by partners because of her condition has been a serious worry over her life.

I hope that your parents would not try and discuss the condition with her personally either?

If she isn’t willing to discuss her condition I would respect that request. You can learn a lot about someone’s difficulties by paying attention over time. You will learn in time regardless and your girlfriend cannot predict her own future. But the less stress she experiences the better off she will be.

As for adapting to difficult circumstances. Everyone experiences difficulties in some shape or form. It is impossible to prepare fully. All you can do is the best you can. Doing your best will always be enough. It is all anyone can do!

That you have such love for her and a wonderful kind heart. I think that is the most important thing of all. That is all anyone asks for, to be treat with respect and compassion.

Love and best wishes! ❤️🙏

First off, congratulations on finding someone you love and loves you. I know when I brought home a white girl home that I felt more the pressure to have a Chinese girl friend and not a white woman. Eventually I lost her. Full of regret. And married my Chinese wife. It was easier to deal with due to having same cultural backgrounds. And, It is only now that I see that it is my life and not the family’s life that matters.

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. And, I wish you two happiness. (Hopefully they will find a cure). You must continue to communicate about this disease with her. If she feels you are looking for a way out then hug her and promise her you are just trying to love everything about her. Good and bad. The way it should be.

So, how to let the family know? Parents will be there for you no matter what because you are their son. My sister married outside race. Beautiful babies. And it took my mother years before she came around due to the grandchildren. Turned out the guy was a very good husband and father. (My sister passed away at 45 due to Cancer) In the end, family will come together. There is no other way than to bring her to meet your parents and warn your girlfriend of the treatment she will face. Then hope for the best and live thru the worse. There will be yelling and forced feelings. Alienation, disapproval, all the good stuff that life brings when one makes an unpopular decision.

Gather your strength. Prepare the girlfriend. Do what you think is right. Wish you good luck.

I know little about ataxia. What I know about it comes form Google search. My experiences with disease comes from my family. My reference comes from Dementia. My grandmother on my mother’s side and my mother had it. It starts off innocently with forgetting one or two things til to gets to forgetting who they are, where they live and who you are. They seems fine and walk out the door. 24 hours later I am running around the neighborhood looking for my mom. Worried beyond belief. Then to be treated as a stranger by this woman who was my mom. So, I am genetically inline for Dementia. Actually looking forward to becoming a new person. Haha. Humor is about the only relief. Anyway, Good luck.

Hi Tommy

Lovely to see you around! My condolences for the deaths on your family and of course for the trauma you and your family experienced.

Love and best wishes! ❤️🙏

Dear BirdSong747/ Sam:

I spent a few hours reading all your posts thoroughly and attentively and replying, including reading about ataxia (Wikipedia, Mayo clinic, other).

(I am adding the boldface feature selectively to the quotes)”I truly love her and can see us spending the rest of my life together… Her neurological condition and the uncertainty surrounding its progression… could potentially impact my role in caring for her“-

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

You brought up a few issues: an age gap, different countries and races, finances, future children, parents’ disapproval of considered marriage, arranged marriages and..  cerebellar ataxia where any function that’s dependent on muscles can be compromised: moving the legs (walking), moving the arms and hands (holding and manipulating objects), moving the eyes (looking), moving the mouth/ tongue/throat (speaking, swallowing).

I suggest that you put aside, for now, all the other issues and address two issues: her medical condition and having children.

“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?

Does she currently struggle with significant fine motor control and balance dysfunction that will make it difficult for her to feed, change, bathe and protect the baby from harm? If the answer to any of this is Yes, then whether she gives birth or adapts a baby.. someone else will need to hold and take care of the baby/ toddler/young child (perhaps you, a nanny, a grandparent..?)

Moving away from the topic of children, you wrote: “Despite these challenges, I’ve come to realize why I’m so drawn to her: * We work well together as a couple… While she’s currently pretty independent and can accomplish most tasks on her own, there is always the uncertainty surrounding whether her condition will progress or remain stable. I do help her out with some things right now as they are hard for her”-

– 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?

“Despite these challenges, I’ve come to realize why I’m so drawn to her: …* We share similar moral values... I want to be upfront about this because I believe that being honest about our challenges and concerns is an important part of building trust with one another… I asked more questions about her ataxia, which made her feel upset because she thought I was considering whether it would be a deal-breaker. She felt like I was weighing the pros and cons of being in a relationship with someone who has this condition“-

– you have a significant difference in honesty regarding a major issue: her medical condition. Honesty, being upfront, and trust are huge moral values. To inquire about her medical condition, to discuss it (gently, compassionately), is the moral thing to do: it’s the right thing to do, not only for your sake, for the sake of a possible future child.. and for the sake of a grandparent who might feel pressured to care for a baby whose mother is incapable, but also for her sake.

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! ?

“once I make a commitment through marriage with her (assuming we get there, and it looks pretty likely!), I’m gonna be there for her no matter what… What’s hard to find online are stories about people living normal lives with ataxia. Most folks I’ve read about are wheelchair-bound and lack autonomy”-

– 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.

anita