There are so many things I miss that Multiple System Atrophy disease has taken away from us!
Ability to travel, for example. We loved to travel together. A weekend, a week. New surroundings or familiar ones. Warm or cold. Skiing was featured in a movie we watched two nights ago and I suddenly missed the fun we had riding up the chairlift together and skiing down, enjoying the conditions or complaining about the ice, then quitting early to sit at the bar for an apres-ski cocktail. I miss the fun and laughter together in those surroundings more than the skiing itself.
The more poignant ones are the daily things. The little connections that used to happen throughout the course of a normal day. Like conversation. Any conversation. It’s so hard for him even to get a single word understood. Even with my ear to his mouth.
We were having dinner a few weeks ago and I had lit a fire in the fireplace and then lit a candle between us. I thought about all the things we used to talk about during dinner – the kids, our day at work, the books or articles we were reading, how we were feeling about life, each other. Now we just struggle to get through every meal – getting the food to his mouth, chewing, swallowing without choking. It’s a slow meal, not because it’s leisurely but because it’s physically hard.
I told him I missed our conversations and asked if he did, too. He nodded and I was so sad. He doesn’t even get to have conversations with other people. Just a few words here and there. At least I can talk to others. But it’s him I want to talk to.
Then there’s the physical connections. The little touches. A hug and kiss before he left for work. Holding hands. No shoulder rubs, back rubs, foot rubs.
We used to always snuggle on the couch when we’d watch TV. Now he sits in his wheelchair and I sit on the couch alone. He used to gather me in his arms to warm me up when we first got into bed. Now I help him get from wheelchair to walker to bed. Lift his legs onto the mattress and position his feet on the foam cushions that protect them from bed sores. Help him with his catheter. Then put bandaids on his nose before I put on his face mask and turn on the oxygen and Bi-Pap machine. Those are all physical connections but not quite the same as snuggling.
Other things I miss? Walks! On the beach, summer and winter. In the woods of New Hampshire, on the colored leaves of fall or with snow falling around us. In the shallow waters of the Gulf. Just four years ago, when we came to Florida for a few months before we moved here, we were walking seven miles a day, barefoot on the beach. We’d walk to a beachfront restaurant for a cocktail, or to another for breakfast.
I miss eye contact. Catching his eyes and knowing just what each other was thinking at a party. Now his head tilts down and he rarely makes eye contact. Sometimes I just perch on the edge of the bed and look into his eyes when I get him up in the morning, just for that connection.
The other day a friend was headed to the airport to be met by her husband on her arrival. I remembered all the months Larry would drive from Cape Cod to Logan Airport in Boston to meet me when I’d return from working a week or two in Alaska with the Alaska Native Healthcare organization Southcentral Foundation. I’d walk down the concourse and find him standing tall, waiting, and my breath would catch with love. Now I never get to see him stand straight and tall. Even when he transfers from wheelchair to wherever, he is bent way over.
Most of the time I focus on what we have. But sometimes I can’t help thinking about things I miss.
I guess it will only get worse.