Progressive Multiple Sclerosis

AOL Health: How do you emotionally cope with Dan's physical deterioration?

Aronie: We watch a lot of funny movies. I did a lot of sobbing. I just sobbed at his bed yesterday. I just started crying. I don't have to hide.

For a long time, I was just upbeat. But about eight months ago, he said, "I'm done. I'm tired. I'm done. I don't want to do this anymore." And I said, "Oh, my God, does this mean you don't want us to cheer you up?" And he said, "That's right." I said, “Dan, I'm following your lead. Whatever you want, you get. You're the leader here. I'm not going to try to make your life any way you don't want it."

So for the next three days it was really dark. We didn't make him laugh. We didn't get movies. We just sat with him. On the third night, he calls me on the phone and he goes "Mo-o-om." And I said "Wha-at?" And he said, "How you doing?" And I said, "I'm good now." And he just came out of it on his own. But I think he really needs to decide for his life what he can tolerate and where he can go.

It used to be -- let's keep distracting him so he doesn't have to deal with the sorrow of this. But the sorrow is what's propelling us forward. The sorrow is what's deepening all of us and making us realize how precious the good moments are. You don't die from pain and sorrow. You die from shutting down and not talking about stuff and being numb.

AOL Health: What has been the hardest part about living with MS for you and Dan?

Aronie: Giving up my expectations that he was going to walk down the aisle and get married. That he was going to have kids. That he was going to be happy and whole. Well, he is happy, which is just a miracle unto itself.

It's been very hard watching my husband suffer because he doesn't have quite the same spiritual trip I do. So I remember saying to him a long time ago, "Would you rather have Dan angry and able-bodied or crippled and beautiful?" And he said, "Angry and able-bodied." That was a long time ago. And now he sees that Dan's at peace. He's funny and easy to be with and beautiful. Sometimes I look at him and his skinny legs, and he can't stretch them out. And his hands -- he can't scratch his nose. And watching that [was painful], but I don't have that anymore.

It's amazing how each time there was a physical loss there almost seemed to be another kind of gain, but you had to go through the adjustment of, "Oh, now he can't do this." Or, "Oh, now he can't do that." Now when his phone rings, his voice is too weak to answer. I always kid around with him and go, "Hey Dan, every time you get accepting and surrendered they take that vice and they say, 'Let's just squeeze that a little more and see how he does.'"

AOL Health: Your husband describes your relationship with Dan as a double-edged sword. You get to spend so much time with him, yet it's also very heartbreaking.

Aronie: That's where we got the title of the movie from. [It's] a certain kind of beauty. I mean, who else would get to be with their kid this much?

When he first got diagnosed, I had read a book by Carolyn Myss, and in the book she talks about something called sacred contracts. It really explains how, as horrible and painful as this has been, how I also knew that this was a teaching that he and I signed up for. And I still believe that. I really don't think this is an accident. I don't think we're victims. It's been very, very hard, but then I think that's the deal you make when you're a human. You say, "Okay, I'll do hard work."

My [spiritual] teacher, who is Ram Dass, he uses an expression, "How do you keep your heart open in hell?" And I feel like that's the work that Dan has given us the opportunity to do. How do you stay open and loving, and not freeze and get numb and angry? It's hurt. The pain has been unbelievable, but behind the pain there's always this knowing that this isn't an accident. This isn't, "Why the f*** me?" This is isn't, "How did this happen?" This is, "Okay, now what do we do?" So this whole story was meant to be.

AOL Health: When did you initially realize something was wrong with Dan?

Aronie: He was 22 and living in Denver. He called and said he suddenly couldn't talk the night before. He said, "I couldn't get words out." The first thing I said was, "Did you do a weird drug?" And he said, "No." And I said, "Did you eat a weird fish or something that might have had a bad reaction?" And he said, "No." So I said, "Okay. Go over to the emergency room and call me."

So after hours and hours, the doctor called and said Dan had a stroke. Well, that was something that was possible, also, because he had diabetes, and they say that that's a side effect after all those years. So we were a wreck. And then the doctor called back and said, "We did an MRI, and he's got MS."

AOL Health: What did you know about MS at the time?

Aronie: We knew nothing about MS. And the research we did was pretty scary.

AOL Health: Have you tried any alternative therapies?

Aronie: We've tried everything. Even bee stings. Nothing worked. Now, we're inquiring about a hyperbaric chamber. I heard about it years ago, but I never did anything about it.

I asked him the other day -- you know, he talks very slowly now and his short term memory is completely shot -- and I said, "So Dan, we're Googling and we're researching this thing called a hyperbaric chamber." He goes, "Om."

He's just so adorable. He's gotten so beautiful that it's almost like I don't even want to mess with this. He's so surrendered and so beautiful as a person now, and that was the hard part [because] he was such an a**hole.

He was so angry his whole life. He was arrogant, and he was angry, and he had the world. He had everything, and he didn't realize it. And now this guy is surrendered and beautiful and sweet and funny and broken. His body's broken, and his spirit is just beautiful.

Continued: Acceptance and Letting Go