The other day I googled "living with a deaf family member" in attempt to find something that would tell me how I'm supposed to deal with all the mixed emotions that come with watching a family member lose their hearing. There is a lot of surface "how-to's" that talk about caring for a deaf person, but nothing that delves into the emotions of it and how it affects the entire family. I want to know someone else has been there and survived, and I want to know how you navigate the changing landscape. How do you move beyond the big elephant in the room that everyone keeps dancing around and pretending doesn't exist? I don't know! And probably most of these answers will come day by day as we walk this journey alongside this family member.
Five years ago, my sister was diagnosed with NF2 which is a disease where benign tumors grow along the nerves of the brain and spine. As they grow, the tumors rob the nerve they are wrapped around of that body function. Most NF2'ers end up deaf, paralyzed, blind, dead. There isn't a cure for NF2, removed tumors can grow back, and the doctors tend to leave the tumors untouched until they start causing noticeable side-effects. In some ways, my sister is a miracle because she had a normal childhood and her diagnosis wasn't made until she was 30 as her symptoms progressed.
During my sister's second surgery, the doctors cut her auditory nerve in order to remove a tumor that was wrapped around it which meant that she would no longer be able to hear from that ear ever again. It's been several years and we've watched her adjust to living with one hearing ear (which functions at less than half of its hearing capacity). Over time, the struggle to adjust between living in the hearing world and living in the deaf world became apparent. We've been told it's a matter of time before she loses complete hearing in her good ear. Because the auditory nerves will be severed, there is no way she can use a cochlear implant--it's just pure silence (minus the incessant ringing in her ears). And I think the doctors are right as it seems like her hearing is diminishing at a rapid pace. I've seen so many changes in her hearing over the past four months that I feel like I don't know what to say or do (and there's nothing really that I can say or do because I'm powerless to do anything to stop it).
I always thought I would have time to learn sign language. But it's been two years since the first family sign language class and I've yet to attend a second class. I quit after the first class because I refused to believe that my sister would ever become deaf. I didn't want her to become deaf and I didn't want to see her embracing it for it meant it was real and it was inevitable. I couldn't handle it emotionally and thought I would have plenty of time to learn sign language. And I mistakenly thought I could just learn it when it was time and that God would somehow instantly let me know it (yeah, right!!). But that time is ever close and all I can do is finger-spell.
I see changes in my sister that scare me for I know her world has changed and is still changing upside down. I don't know how you live every day knowing you have literally "too many tumors to count". I don't know how you live every day with constant ringing in your ears without losing your mind! And I don't know how isolating it is to not fit in the hearing world and to not fit in the deaf world because you're neither hearing or deaf...you're somewhere in between. At church, she can't understand the sermons and prayers of the hearing church nor can she fully understand the sermons/prayers of a signing church.
It still breaks my heart when I see people try to talk to her and she has no idea that they are talking to her from the cashiers to customers to salespeople to family. It makes me sad when she gets that lost look in her eyes in the middle of a family conversation because she's trying hard to keep up but can't. And my heart just goes out to her when she thinks she's heard something and it was not what was said at all and she then starts talking about something totally unrelated to the conversation. No one knows what to say and there is awkward silence as eyes dart around trying to figure out what to say next and she can tell from everyone's faces that she got it wrong.
I've watched friends and even family distance themselves from her because they don't know how to communicate with her. And there have been days when I've done the same thing because I'm afraid that if I could say what I really wanted to say, it would make us all cry (or even scream, "It isn't fair!!"). I just want to protect my little sister and make everything all better for her, but I can't. It still scares me to think about what it's going to be like when she can't hear us at all, when she can't hear ANYTHING at all. How do you go from a life of hearing everything to a life of hearing nothing?
And then God reminds me of some incredible ladies that I've met over the past couple years in the homeschooling world who are deaf. They have shown me that they are every bit daughters of Christ, full of life and potential, as they impact their world in so many ways for Christ. They are strong, awesome moms who know how to rise above their limitations. They don't let deafness stop them nor does their deafness define them. They roll with the punches and have embraced the life that God has given them. They pull together in the discouraging times and have created a community of love and support so they are not alone. This is what I hope and pray for my sister! It wasn't a coincidence at all that over three years ago at our first homeschool support group meeting, a beautiful, vivacious mom walked in and explained that she was deaf and her battery on her cochlear implant was about to die. She left me sitting there dumbfounded. I didn't know whether to laugh or cry, for the timing of our meeting was so God-ordained. God knew I needed her to show me that life still goes on, hearing or not. And God knew that my sister needed her for she has taught my sister everything she knows about signing and assimilating into the deaf culture.
Maybe instead of googling "living with a deaf family member", reflecting on the verse that has defined my sister's NF2 journey would be more beneficial. "Come and see the works of God; He is awesome in His doing toward the sons of men." Psalm 66:5. God has provided for her (down to frog-buttoned pjs for her brain surgery) and continues to perform little miracles along the way as shown on every MRI and doctor's visit. It's never easy watching those you love suffer, but maybe it'd do us some good if we observed those who are suffering and see how they have the faith to keep going day after day when the prognosis never changes. And maybe rather than wallow in the overwhelming emotions of it all, we need to make ourselves "Come and see the works of God" regardless of our feelings. For it is when my focus is directed back on God that I remember His goodness, His hope, and His power to heal.
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