Journal entry October 28th 2020
deaf... the thought of it sends a surge of grief through my body. It seems to get stuck in my throat, and then releases as tears in my eyes. My husband will likely be deaf.
We are just now understanding the magnitude of his condition. A few months ago, he got sick with a common virus and lost his hearing in his RIGHT ear. We just recently had an MRI done to see if there could possibly be something in the ear obstructing it. The right ear was clean and clear, but they found a mass in his LEFT ear. We don’t believe it is cancer, but that is always a possibility I suppose. The plan for now is to wait and watch the mass grow, and once it chokes out his hearing, then we will choose either radiation or surgery. Both radiation and surgery have huge risks, and that’s why we are waiting for this small problem to become a big problem before we go there. I will spare you the details, but we have a bumpy road ahead of us and the outlook doesn’t seem promising. We are hoping he will have 10 more years of hearing with his left ear.
The question now is, how do we really want to spend our 10 years? What will we fill our lives with and what needs to go? A little while back I wrote a post about feeling a ‘shift’ coming and that I could feel that my life was going to change. I’m gaining clarity now about what it all means, and I will be trying to live each day with more purpose and intention.
Thank you for your ENT recommendations, we greatly appreciate it! Thank you for your warm thoughts and prayers and encouragement. Thank you for offering a safe space for us to feel sad at the moment. Like all difficult situations, I very much look forward to meeting our future selves who have become stronger because of it.
Journal entry March 4th 2021
The last few months I let myself grieve over my husbands hearing loss and what the future will look like for us. I felt all the feelings as they consumed my entire self. I took that uncertainty, that grief, and created this short film; a reminder of what’s most important as our time ticks by. @msmoem had the perfect words for all of my feelings. I can’t tell you how good it feels to have this small piece of art released from within.
Journal entry March 13th 2021
The pitch of my voice and the kids voices is the pitch he can’t hear, and too much of our voices actually cause him pain. It’s been 365 days of ringing and deafness in his RIGHT ear, and a whole lot of scary about the future of his LEFT ear. Yes, he got sick and lost his hearing the same day the world decided to lockdown because of the virus. As sad as it has been for us to learn this information, we are grateful that something has caused us to pause and reflect on our time. At this point we are feeling more hopeful, like we have gained the strength to live with it. Thank you for your love and support!
Answers to FAQs: (R) = right ear, (L) = left ear.
•(R) Hearing aids are useless for him, you have to have some hearing in order for them to work.
•(R) Steroid shots are just a “hail Mary”, our doctor said.
•(L) Radiation on the mass could cause cancer.
•(L) Surgery on the mass will cause deafness.
•(L) A biopsy on the mass to look for cancer would cause deafness.
•(R) A cochlear implant is an option, but we are not eager to go down that road. As of now we are choosing to wait until he absolutely needs it, and are hoping for medical advances and stem cell research to progress.
•(L) MRIs will be needed every 6 months to watch the mass grow.