This post was originally published on November 28, 2023.
26 April, 2023, is the day I spoke my truth for the first time. I wrote about in “When Sanctuary is Offered.” I meant every word then. Really, I did. I was also willing to give up the social life that was so destructive to my mental health.
27 November, 2023: the day my hearing deficiency was dealt with.
I don’t do 9:00 a.m. appointments. If I have to walk, take the bus, and be out of the house that early, it doesn’t work. I’ve set that limit with people. Today I had no choice and arrived ten minutes late. As it turned out, 9:30 would have been soon enough. The Monday chaos of gathering, prepping for the day, and being ready for the first clientele was interesting, and frustrating, to watch. Oh well, with my morning caffeine in me, I walked into the room. I had an agenda: better hearing aids that would be covered by the insurance. I had a list of requirements. Was I nuts? I’d soon find out.
An intense trio of hearing tests confirmed my suspicions: I’d lost a wee bit more hearing. I wasn’t shocked by the news, as I was prepared to hear the number. What I wasn’t expecting was what happened next.
I love the “gadgets” that I’ve worn for seven years. I’ve put off getting new ones because they were the best! Well, they were the best until they weren’t, and I finally broke down and made the appointment at the ungodly hour of 9:00 in the morning. UGH!
If one has to do the unthinkable, then I advise a list of the absolute requirements. If those can’t be met, don’t do it. This is how the second half of the appointment began.
The new ear molds had been made. My ears are even petite. First item: Are these things covered? Yes. OK, let’s move on. I want the chargeable, and not the battery, type. Now, here’s the crazy part. If you go with batteries, the insurance will cover some of the cost. At 90 euros per box, and a three-week battery life per set, you will go through some boxes. I’ll buy the charger, thank you. Personally, I think the insurance didn’t think that all the way through.
Moving forward: What can you do for my hearing in a social situation? How about a microphone that does a couple of things? It will link with your desktop, and it will serve as a microphone when you need to talk with someone in a densely populated social setting. I WANT!!!! The insurance covers it. Oh yes, I’ll do it. This is the answer to multiple issues.
By now, I’m feeling like I just had Christmas, and Santa answered my every need and want. It is true that I just inherited more chargers that will replace the ones that will be given away, but it’s a good trade-off.
My bag had three boxes in it when I left some two and a half hours later. As I walked home, I noticed the feeling of gratitude that I was feeling and took the time to honor it properly. As the gentle rain hit my umbrella, I had to focus on the path I was on. My heart was full, and as I entered my home, I was excited to try out the new gadgets. I cried when the mic put the sound into a better hearing place for me. I was calm, relaxed as the stress of listening changed from difficult to much better.
Tomorrow is Giving Tuesday. It is a day when people in the US give to charities. While I do have a co-pay on this new hearing aid, it is not what I would have needed to spend had the insurance not covered things.
I have no more words for what happened today. They aren’t needed. The gratitude that I feel for what I have sitting in my ears is goon enough.
The sun set around 4:30, and I’m thankful to be in a warm house. It is time for some dinner and a relaxing evening. I need to start thinking social again. Yes, I just said I’d socialize again.
I realize that when you see me at a street crossing, you want to take my arm, tell me it is clear to cross, or even help me to cross the street. Your kindness, while well meaning, is not appreciated. I’ll explain why this isn’t helpful, or needed.
I’ve been living with disability my entire life. For many within the disabled community, this has been our situation. For some who are disabled because of illness or injury, this is not the situation. Their journey into disability might be more traumatic. They may slowly lose function in an area of their body, wake up one morning to the horror of lost capacity, or find themselves in a hospital bed with a missing limb. Many of us, if not all of us, within the disabled community deal with trauma surrounding the disability, and some must cope with ongoing trauma due to a gradual loss of even more function. Imagine someone with Usher Syndrome, who faces this on a daily basis. When sight or hearing can disappear, or you watch as you see less each day, or can’t tell what is gone until there is a radical difference, it is traumatizing.
Trauma may look different for the disabled. Please, ask and listen to understand. Someone may seem to be reacting abnormally when it is normal for their circumstances. When someone lives with ongoing events that are traumatic, and treatment for the trauma doesn’t completely solve the problem, cut them some slack. They may need it.
In most of the above situations, the journey of learning to live again may take a person to a rehab center. My journey into a rehab center began with the realization that I’d lost more vision and couldn’t see as I once had been able to see. I was down to twelve percent of my vision. For me, rehab was about learning better ways of doing things, using less of my vision, and confronting myself in a new way. I’d spent most of my life trying to fit into mainstream when I didn’t fit into a mainstreamed situation. I had to come to an understanding that now, more than ever, I had to embrace new ways of doing most things. When I think of leaving my home without my cane, I cringe and know I’m not safe without it.
Why do I need a cane? At first, I thought the need for the white cane was to enable me to navigate tricky spaces. I understood that I needed the help at night, but why did I need it in daylight? The longer I used the cane, the more I became aware of a few things. The cane let me sense areas to stay away from, such as sand or gravel. Both sand and gravel do not allow me to feel what I need to feel underfoot. I need to avoid both sand and gravel because I could slip and fall. The same scenario goes for ice and snow.
The cane also serves as a warning to others that I’m not going to see you clearly. I may not see you at all because you are out of my field of vision. People need to be prepared to take evasive action to get out of my way! This brings me to my first gripe: anyone on their phone and not tuned into their environment. Do you want me to collide with you? No, you don’t. Prevent this by walking with 100 percent of your attention on the task of navigating the space you are presently in. Having had several close calls with people who have been inattentive to their environments, I know it would be appreciated by so many. We don’t want to injure you or become injured by you. While you may not be driving, you are navigating spaces, some of which are very crowded. Please look out for oncoming people because if you don’t, someone might say something like “Watch where you’re going!” to you. They’re correct in saying this to you! Your phone can wait, and if it can’t, then move to a safe space to focus on what you need to do.
If you feel I’m being harsh, I’m attempting to protect myself in an environment that isn’t always friendly to me because I can’t see everything.
Offering Assistance
Here’s some handy advice on assisting those with visual disabilities. You’re at a street crossing where there is no signal. You can see that the traffic is nonstop (the visually impaired person may be using their hearing to know when to cross). You also see that there are gaps that would be difficult for the disabled person, even though you could make it to the other side rapidly. You could make the offer of assistance in this way: “Wow, this traffic isn’t going to slow to let you cross easily. Would it be helpful to you if I assisted you to make a faster crossing to where we need to get?” If they say yes to this question, ask them how they want you to walk with them. This approach places the disabled person in the position of accepting or declining, and it comes with a reason for the offer. It is good help that may be very much accepted and causes us to accept the offer because it isn’t a rescue, allowing us to remain dignified—and that is a win for everyone! If we’re at a signal with a walk feature, we don’t need your help.
Speech and Hearing
Imagine not being able to hear clearly. When you can’t hear clearly enough to distinguish a D from a T or and S from an F, or other consonants and vowels, the life of a hearing-impaired person becomes stressful.
Imagine trying to spell words that you can’t hear properly. Imagine not being able to pronounce those words properly. Add the challenge of uncertainty when you’re not sure if the word you heard spoken was “who” or “shoe.” The conversation becomes draining, confusing, and if you’re in a crowded room, it can become difficult. Social situations can become a challenge. For those with a hearing loss, the issue may be about isolating as best one can.
While at the rehab center, those who dealt with the added hearing loss gave voice to the difficulty of hearing in the crowded dining area. I spoke with staff about not being able to enjoy the mealtime, and the need to engage in conversation at the table. No one had spoken up about this issue before. I was asked for solutions. First, I was isolated. That didn’t work. I didn’t want to eat alone. The next step was to ask others in this situation if they were experiencing this. “Yes, I am!” This was the common response. The next step was to reserve a table for us. This table was on the edge of the dining area. Nope, that didn’t work. Then they put us on the other side of the space. They were hoping the distance would solve the problem. Distance didn’t work as the noise trickled into our space, and it was difficult to filter it out. When I left, they were still working on the situation.
I’m faced with the fact that I need to semi-isolate in social situations or avoid them altogether. I’ve tried it both ways, and enclosed social situations with heavy noise levels are a pass for me.
I’ve been in The Netherlands for over twenty years now. I’ve tried to learn to speak and hear Dutch. It has been a challenge to learn a second language with a hearing loss. For the most part I try my best to converse in Dutch, and for the most part people are polite. Then there are the ones that judge and condemn. I’m told it is my fault that I can’t speak this language fluently at this point in my residency. The people who respond to me negatively are few in number, and to them all I can say is that given my situation, I do my best. Don’t judge until you understand that hearing is my challenge.
So, helpful soul, please listen for understanding. Understand that I know what I need, and above all treat me, and my disabled brothers and sisters, with respect. We’re having to face this every time we step out of our front doors. Cut us some slack, please.
About ten days ago, I walked-rolled through my front door. My front door is still a mess; I can’t lock it well. I can’t go out because my left leg is still weak, and I’m playing catch-up here at home. It could be worse.
What I noticed was how everything seemed shorter, as I was able to stand up again. The sink, the toilet, closet shelves, and the bed! For someone who must live in a wheelchair the rest of their life, the world is seen from a different angle. When I was using wheels, it seemed normal, and when I stood up again, my world changed.
The physical therapist just left. I have to climb the stairs differently, do some chair exercises, and all of this is to build strength.
When I went to the surgeon, I saw that it was a busted femur with two long screws inside. OK, that makes sense. I’ve been so out-of-whack that my logic hasn’t worked well. Painkillers mess you up. These painkillers don’t work like they used to.
Back to playing catch-up. The only way I know to do this is to do one project at a time. Next are the taxes and finishing up a project that began in early February. I’m hoping to get these done this week, along with the normal stuff.
Why is it that when our lives get interrupted, it is hard to hold the focus on where we were? Maybe because where we were isn’t quite where we left it. Stuff moves around, and we move around, and we change. My kerplop on the landing, by its necessity, moved me into new territory.
This is like the funeral bubble, and kind of not like that bubble. The difference is that you don’t go to thin places—you go to new places of self-understanding. This time I’ve grown, and I’ve experienced an area of disability that I’ve learned from.
The first night I was there, the nurse got in my face and said, “You can do this.” Well, of course I can—I must. When I think back on all of it, I must have looked really scared. She was using a wheeled device to transfer me to the toilet. I was irritated by her telling me what I knew I had to do. I did set about doing it. Not rapidly. As I gained confidence that I could do a spin on one leg and not fall, I picked up my momentum. Then dressing became easier, and so did other things.
People often say that the disabled are courageous, and maybe there are times that we are showing courage. For the most part, I believe that our acts are a part of daily living, and this is what we need to do to survive and live our lives.
Maybe there are “please do’s” for the disabled that I should list here. Just as with grief and loss, there are some helpful things you can do for us.
Do:
Allow us to do what we do normally. Things like crossing the street are second nature to low-vision and blind people. If you see someone in a wheelchair who can’t reach an item high on a shelf, ask if you may reach it for them. Do ask, and if you don’t know about a specific disability, ask us if we can explain things. Sometimes this is doable, and at other times it isn’t welcome. Use common sense. Be polite and, above all, accept the answer given. It is also OK to tell us you’re asking because you’d like to become informed. Can we refer you to a good source? With a phone it is simple to jump to a website.
Teach children how to interact with all diversity. Kids pick up queues from adults. When adults can teach proper manners and behaviours, kids learn. Kids want to be smart.
Don’t:
Don’t try to force us to do something. Being helpful also means that the person needs to do the simple things him- or herself.
Don’t rush someone. You might be able to do it faster, but it feels awful to be made to feel like you need it done to suit your own pace. I’ve had people do this with me, and it feels degrading.
If you think it is rude, don’t do or say it.
If you mock, your children will mock, and in the long run they’ll be seen as ignorant. Kids want to be seen as fitting in appropriately.
I’m home with a new way of thinking—just as it should be.
I’m standing on the inbound platform at the UMC station as the tram pulls in, and I board. The tram isn’t full, and I find a seat facing forward, not too far from the doors. I notice the quietness of the tram, and we pull away. The next stop changes everything.
I’m in what is the medical area, and the science park. The med students board, taking every vacant seat and filling the vacant standing areas. The next stop allows for more students to board, and the tram is filled with the chatter of the students.
I’ve taken this tram ride multiple times, and this time I stop to notice the voices, the animation with which the students are speaking. Then I look at the physical behavior of the passengers. They are alive with excitement, enthusiasm, and hope, and it is catching. For the first time I’m noticing the vibrant nature of the students.
Something tells me to stop my thinking, and to watch carefully. I listen to that suggestion and I quiet my mind to listen and observe what is happening around me. That 20-minute tram ride altered how I think about others in group settings.
Normally, I avoid groups because it is chaotic, and I can’t hear others well enough to converse with them. I wrote about this in “When Sanctuary Is Offered.” As I’ve sat with this experience the past few months, some things have changed.
Could it be that I opened up to some type of new understanding? Did I rethink the present hearing aids I have? Was it a combination of things? I realized that things needed to change and I took steps, and some risks, to change things. It pays to rethink things: it did!!!
With the new gadgets approved and all mine, I will venture into new situations. With an appointment at the UMC this month, it will be interesting to experience the ride on the tram in a new way.
I’m also having a new doorbell installed in my house. It will use light, and not sound, to let me know that someone is at my door. No more missed doorbells for me! Oh, and it’s covered by the insurance!!! As mentioned in a previous post, I went shopping for a better hearing situation!
I hear the noise of the organics being picked up and pause to think about the winter winds that blew all the leaves in the universe into my front yard space. I think about the storms that put it all there, and the storms that have blown unpleasantness into my life due to disability. I recall the time when I asked Jon to answer the question of the one gift he’d give me if he could. I still feel the same way about my body. Why would I want to change my core self? Yes, it would make some things easier. It would mean that I would not need to deal with people who show frustration at the way I do things: slower than they can do the same thing. I am happy with who I am. I’m proud to advocate for those with disabilities. I’m proud to be me. It isn’t my issue; it’s yours if you can’t deal with me as a disabled person.
Once we’ve taken an inner journey and done our soul work, things change. Going inside is liberating!
This time around, the work I had to do to get to new hearing aids wasn’t as intense as other things I’ve done.
How do you know when you’ve done enough work? My experience is that the things that were hard or difficult become easier to deal with. Doing the work wipes out a level of fear that can be present when confronting the nasty and the unknown. In this phase of things, and when dealing with our lives in new ways, it is important to tack a mental reminder up: one byte at a time. I think this isn’t something we all start out doing at first; it is something we learn our way into.
Taking it slowly and not being overwhelmed by things isn’t something that comes easily for some of us. We labor under the misguided notion that we can take it all on at once. Then getting overwhelmed by the task before us hits us with a grand force of wind. POW! Sometimes anxiety builds, and we stop it all, only to discover that we’re not where we want to be with any of what we’ve dealt with.
Going inside myself enabled me to flesh it all out. This time, I’m navigating a new stretch of the river that I’m surprised I’m on. I suspect it has some new places to tie my boat up to, to leave, and to explore the new interiors I’ll engage with. I suspect that this part of the soul journey will bring new things, people, and joy into my life.
I return to the tram, and as I watch and listen, I realize that I’m learning something about myself that I haven’t been able to admit as I’ve needed to: the isolation of my hearing situation must come to an end. I’m not the widow who is sitting alone on the tram. I am the widow who is claiming the life she knows is out there in new ways. I’ll risk large groups. I now have a tool that will enable me to do just that.
This all happened because I became quiet in what I once viewed as chaos. Had I not done that, I wonder what would have happened. Time to muse on this experience some more.
