Tuesday, May 7, 2013

Karen, My Wife

Hi, I’m Karen Swartz, Jeff’s wife. He asked me to write about my experiences living with a suddenly deaf person.

Jeff and I have been married for nearly 14 years and we have experienced many health challenges over the course of our marriage, including the preterm delivery of our second child and her diagnosis with an incurable genetic condition, my brush with breast cancer, his interstitial cystitis, our late diagnosis with celiac disease. We have a lot of experience in dealing with the unexpected.  When Jeff became increasingly ill last spring and finally ended up in the hospital with a bone infection and sudden deafness, I did what I usually do in the midst of crisis - focus on getting from point A to point B. I tell myself I can always fall apart later, and sometimes when later arrives, I’m past the point of falling apart.

I’m amazed and impressed by how quickly Jeff has adjusted to being deaf. There were hard days in the hospital, when nurses would try to speak to him over the intercom, despite my repeated instructions that he would not be able to hear them to respond. And in the first months deafness sometimes came with the additional cost of severe pain and noise sensitivity. That was a terrible time, because there was nothing that helped - no pain medication gave relief and no matter how quiet the girls and I tried to be, sometimes we would drop a dish or accidentally slam a door and bring on a new crisis.  

In the beginning the most frustrating part for me was not knowing the source of this sudden catastrophe. No doctor, no specialist knew why he developed such a severe infection, why that resulted in deafness, and why there was such unrelenting pain.  I was more concerned that he might have to endure life-long pain than that he was deaf. Deafness seemed far preferable to me.

Jeff is not the sort of person to give in to despair or hopelessness. When he was sufficiently well enough to focus, he started doing research and found online support groups. I went with him to visit doctors, specialists, and audiologists. I was greatly relieved when he found out that hearing aids would help, at least in the short-term. Otherwise I wasn’t sure how he would keep his job or how we would support ourselves financially if he had to take time off to get a cochlear implant. The potential financial impact was always at the back of my mind, and it continues to this day. If his hearing deteriorates further, he will almost certainly have to get a cochlear implant if he wants to continue in his current or a similar job.

But I’ve been part of so many positive developments as well. I love seeing Jeff immersed in anything that interests him, and he is very interested in deaf issues and deaf culture.  I love that he wants to help others in similar situations. His blog has given him an avenue to express himself through writing, which he has always wanted to do. Before we found ourselves in this situation, I had never given a moment’s thought the deaf world, had never met anyone deaf, really, or thought about the sorts of challenges deaf people would face. I had no idea there was a deaf culture, or that there were so many sensitive issues related to what it means to be deaf, or that you could view deafness as something besides a disability.
There are some daily challenges. No more chats as we drift off to sleep, not even via sign language. I often forget to make sure I’m looking at him when I speak if he isn’t wearing his aides, and sometimes I forget that I don’t have to face my kids for them to hear me. I worry about him not being able to hear alarms, sirens, oven timers, or calls for help. I worry about job security and discrimination. I worry that I will never master sign language.

But for the most part, I feel good about things.

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