“When someone loves you, they don’t have to say it. You can tell by the way they treat you.”Unkown
I know what you guys are thinking…Wait! What? Matt’s not dying. You guys are so positive. You say he will beat this disease. There is so much coming for ALS in research and therapies. How can you believe he is dying?!
Easy. Last week he came a little too close to it for comfort. We let a cough go a little too long, it turned into a cold, flew into full blown pneumonia and at one point I was standing in the hallway outside his hospital room and the doctor told me I needed to prepare for respiratory failure and the measures they could take if that happened. Um, ‘scuse me?! It was a very long week with some time warpy moments where it felt like everything was being thrown at me really really super duper fast, least of which being my husband’s mortality.
So guess what, Matt is dying. And he is dying faster than the majority of other people. There are people dying faster than him, but in a game of averages, Matt has outlived the average ALS patient. Fortunately, my husband has never been average. In fact, one doctor called his brain beautiful and exceptional, so that is a pretty ironclad medical diagnosis of extraordinary. Who needs second opinions?
Yes, we are absolutely optimistic and enthusiastic about everything coming out in the research community. And the drugs that are in trials right now look really promising. But as I have said, we don’t keep the rose colored glasses on all the time. Last week was a hard look at that. This disease is brutal. On Friday afternoon we picked up our brand new au pair in Chesterbrook, PA, and 12 hours later Matt woke me up saying he couldn’t breathe and to call 911. (I didn’t, I called his mom!) He was admitted to the hospital, in and out of ICU for the next 8 days. These upcoming therapies are not coming out tomorrow and today is all that we are promised, sometimes not even that. His mortality is something we have to face.
We don’t live under a cloud of death. Matt is all around a pretty normal guy, minus the speech issues, loss of most motor functions and being confined to a wheelchair. He gets to the boys’ athletic and school events. He goes to the gym most days. He enjoys a beer and whiskey. Get a good rare ribeye in front of the man and it will be devoured. A hot fudge sundae with sprinkles, melted peanut butter and walnuts, topped with a cherry is his favorite bedtime snack. So although he has ALS, he is also living. A friend of ours has a song about it – some days he is getting by, others days he is living. No matter the type of day, I love him the best I know how.
I try to love this man without holding back. We tell each other multiple times a day that we love each other. I try to show him. I have outgrown my emotional teenage angst years and am not the most openly affectionate person. I show Matt love by getting him things I know he likes – ribeye for dinner, Smoothie King for lunch, kombucha when his stomach bugs him, matzoh ball soup when he has a cold. The man loves to eat. I show love through action. Almost every time I go to any store alone I look for a little something to bring back to him that shows him he was on my mind. To bring the world to him on the days when he can’t go meet the world.
I try to not show him my pain in this disease. As a wife, I miss out on a lot of the normal relationship things. I don’t show love for him through hugs and kisses and snuggles. Partly because it’s hard physically to do as well as emotionally hard. Also, it isn’t really “us”. Maybe it’s a good thing that Matt wasn’t one for PDA so it’s not something I miss as much as other spouses might. I wish we held hands more often before ALS. I know he knows that I miss our physical relationship – not like that, we made 2 kids after diagnosis – but the hugs and holding hands and kisses and generally being affectionate when it was the two of us. We used to do this thing we called “willy-wonka”. We would lay on the couch facing each other with our legs intertwined – like the grandparents in Willy Wonka – and watch TV or talk or read, just hang out. Lay in bed together and watch TV with my head on his chest and his arms around me. Now the weight of my head on his chest makes it hard for him to breath and we have yet to find a way to get his arms to stay around me, but we are still trying. I give him love by not showing I miss these things as much as I do.
I show him love by being his caregiver. I think both Matt and I can say this is not a role that comes naturally to me. I’m a constant work in progress with it. I have a short fuse that has hopefully grown. Being his arms and legs can be trying for me, especially if it was a rough night of sleep. I like my sleep. He is also about 50-60 lbs heavier than me and although I am strong, sometimes I have difficulty moving him. However, I know he is the most comfortable with me and he is not ready for outside help. When he was in the hospital he would have anxiety if he woke up and I wasn’t there. I guess I am kind of like his security blanket when we are out in the world. He knows I won’t let anything happen to him, unless I am the one to do it. My favorite thing is to give him a shave and a shower.
I love him by treating him the same as I did before he lost his physical abilities. We still fight. I still get really annoyed with him and let him know. I still pick fights with him when I am annoyed and then blame him. Matt is still in charge of our finances and I go to him if there is something I want and make sure it is in the budget. He still makes the final decision on the things our family participates in and where we go and how much we spend. He is still the head of our household in close to the same capacity as he was before ALS.
You love someone who is dying the same way you love someone who is living. Our love is intense, complicated and very real. Like every married couple before and after us, it has had to adapt to the life we are given. There is not a way to fake love with this disease. I give him all I can of me and he reciprocates by giving his best to me. We have this family we built that has both of our hearts. I would not have that without Matt. I would not have this life without Matt, and as I have said, it is a pretty freaking great life. On the days this disease beats me down and I don’t feel loved or feel like loving, I remember I love him more than I love myself.