Living With Disability | Beyond Grief and Loss Therapy

Mar 12

No, You Don’t Understand

An estimated 1.3 billion people, or approximately 16% of the global population (1 in 6), experience significant disability. This number is increasing due to population aging, the rise of chronic health conditions, and environmental factors. The vast majority (about 80%) of disabled persons live in developing countries. The result is what comes up when I did a search on Google. It is a WHO statistic. So, on behalf of over one billion people, most of whom are not in a developed nation, I’m going to gripe.

I’ve said it before: disability is non-discriminatory. Or, put another way, it just doesn’t care who you are. Disability gets you when you’re born, and it can be a part of what takes you out when you die. It is the big uncertainty in life. We can be any skin color, faith, gender, or age. Disability doesn’t care. It just plows through our lives. And most disability shows up in places where the developed world won’t ever visit.

We turn the disabled into some type of false hero. All a disabled person is doing is surviving the way they must. We are not heroes of any sort, and to put such a person on a pedestal may serve your ignorant needs: it isn’t helpful to the community. Rant over.

So, let me tell you about my day in the developed world.

I owe some things I can’t do to the fact that charitable souls have compassion and enable me to do them. This time it began on a Friday and escalated to this last Sunday while trying to pay bills. I was on the bank app, and all of a sudden, the thing went bonkers and told me I had to reactivate the app! It gets crazier, so, buckle up people, this is a wild ride.

Monday rolls around, and I try to do the thing that no almost blind person with only ten percent of her vision should try to do. I call the bank and wind up with a twit who keeps telling me she understands. NO, she doesn’t, and the fact that she keeps telling me the she does understand only proves that she doesn’t get my situation at all. Finally, she tells me that I need to go to a service point. The nearest service point is a good 20-minute drive, and more by bus. Now, I’m wanting to rip her ignorant thoughts to shreds. In frustration, I hang up. I finally go to my neighbour’s. He says he’ll help and asks me if I’m sure I want to allow him to have this data. OK, NO, I don’t want anyone in my data, BUT do I really have a choice? NO. I get things put right with the app. All is well. BUT NO, it isn’t. Now I need to get my business account back. This one is easier because there is no scanning involved. I can do this!

After I don’t know how many attempts to get it done, I call the bank, again, and get sent over to the business division of support. I wind up with someone who answers the phone happily. I explain my problem and my visual situation. She listens, and she gets it. OK, so we’ll do this slow. She can see from her end what is going on with things. After a couple of attempts we’re both puzzled by the lack of success. Then she asks if I’m on the business tab. WHAT? I didn’t see that. Am I the only person who doesn’t see that tab? No, I’m not. OK, so now I’m on the right tab, and it still doesn’t work. I’m not an idiot; I can do this. She’s stymied. I’m not knowing what to think, and then she says OK, this is a hail Mary pass, here it goes. What if, when you were on the app on Sunday, somehow the app went and updated itself, and you got told to reactivate? Go to the App store and see if you are told to upgrade the bank app.

So, off I go! Holy Moly, it is telling me to upgrade! So, I do the upgrade. I do the data again; I wait, and then, spontaneously, and without thought, I sing what I always sing when something like this happens: “HOLY MOLY, she threw the pass, Mary caught it, and it worked.”

Now, what I haven’t told you about this call is that the two of us are having a delightful conversation. We’re laughing, and trying to fix the crazy, and it took almost an hour. Now, she’s reporting this strange thing to the powers up the line. I.T. is gonna muse over this one.

She never said that she understood. She became a conduit for accessibility. We worked to get it fixed.

The sun is shining, and it is warming outside. The country is happy the sun has arrived. Spring is springing, and I can go out without a heavy jacket.

I pause, and once again, I give thanks: a thank you, because there are compassionate souls out there who will care enough to get that I’m not any type of a hero. I’m just trying to live my life, and to get things done. I just have extra hoops to jump through.

So, let’s talk about hoops. The hoops that could be made easier and that would give many of the disabled a fair shake at an easier existence.

Since I’ve lived here, I’ve heard countless references to the ADA, or Americans with Disability Act. Banks, public buildings, and all government sites must be accessible to everyone. So, ramps for wheelchairs and PIN machines, and web sites must be usable to everyone. Grocery stores and other commercial outlets do not have to comply. Somehow, the ADA is seen as the solution in countries that aren’t the US. I still had to deal with things that were not safely accessible to me if I wanted to go grocery shopping. Now, I do this online.

While the ADA allowed for equal Education for all through the IEP, or Individual Education Plan, for K–12 in the school system, it is not a guarantee that the plans will be put in place or meet all a child’s needs. The ADA is a great piece of legislation. The IEP, on the other hand, can’t guarantee that students, their parents, or education staff can create all resources needed. An example of this is that the IEP pigeonholes the person: for instance, a child that is both learning disabled and academically a high achiever. The school may not provide the proper resources for both situations. Where would the schools have put Einstein? During his living years Einstein spoke of having problems with reading and getting the right words out. It is thought that he may have been dyslexic. There are other processing disorders that could explain his spoken-of communication issues. I have friends who had to fight for children in this exact situation.

I’ve witnessed as clients with children in this category struggle to make it work for their kids. The truth is that income level can determine options. Parents who can afford private education where class sizes are smaller have children who can, in most situations, obtain the resources they need to thrive in an education setting. HOWEVER, having said that, even income may not enable children to have what they need. I’m saddened that this also happens.

The fact is that most public education is geared towards the traditional teaching process. I would have done better if I could have not only seen it and heard it: I wanted to touch it. What if the learner needs to include touch in their process? Chances are, that isn’t going to be a possibility.

As I write this, I struggle with the fact that, for some people, I’m writing about things that can’t be, and I’m writing about things that are so far beyond the developing world. Then, as I pause, I remember a TED talk about a wise educator who modelled the world for his class, and the kids had to come up with solutions to the world’s problems. As the school year came to an end, there were still unresolved issues. He though the kids would fail at it—just like adults are failing to do the right things. Then, as the clock wound down, the children came together, and through compromise and imagination, the world in that classroom resolved it all. They wiped out poverty. Maybe we should be asking our children! I think they may understand.

Jun 3

The Burden (Revisit)

This post was originally published on November 7, 2022.

The disabled carry so much inside. On a daily basis we are challenged with what we let people know about our lives and our needs. Is it a good day or a bad day? Do we need to ask for help, and if so, how much of that help might be robbing us of our dignity? You may be thinking that we need to get over it. If you aren’t in our shoes, please think twice about that remark.

I like to think of myself as independent, though as I’ve lost more of my vision, I’ve had to ask for more assistance. I try to do as much as I can, and I’m noticing that the abled world is making it more difficult to do so. It adds to my daily burden.

At first, I was going to write a regular post. Sitting here, I’m going to do this differently. Here it is:

What I Do

As I

wake, I notice

My legs

And

Scan the rest of my body.

I’m rested.

I move from the bed realizing that I can walk when others can’t do this.

I engage in morning listening to a book because

I can no longer read print easily.

And,

I give thanks that I still can hear.

Today should be a good day.

I think of those I know in wheelchairs

or

struggling to walk this day.

I hold them in my heart and hope that they will have the help they need to survive

Another day.

My mind travels to those who must have assistance in all things.

We don’t think about that much unless we’re directly affected by someone in that situation, and

I hope that caretakers will treat them with dignity on this day.

I leave the house to run errands

And

The sun shines in my eyes.

Even with sunglasses

I strain to make sense of the path that

Is covered by foliage.

It is beautiful and crunchy and

I love it.

But

I can’t make sense of the path with my cane.

How would I explain my reality?

I try.

But

It is so different from yours.

You can’t really understand

This life of mine.

Then I must explain to the abled that

I can work,

because they can’t imagine me doing what I do.

Should I do nothing all day

When I can do something I love?

More of a burden

That I haven’t created.

I feel:

Judged,

Enraged,

Worn out,

Like screaming!

I want to cry.

To protest.

To yell at people.

But

WHY?

The disabled person’s greatest burden

Is

That

We get lost in the shuffle

And

Are not seen when we need to be seen.

Feb 12

Two Dots and a Bouncy Ball

My world has been challenged by panic-out-of-control crazy. What do I do about this? It has to do with my ability to read. The state of overwhelm is handled by slowing it all down and being able to rationally think it out. When the thinking is done, the solution is clear, and then you just work the solution.

A friend with Ushers told me that the hardest part of her process is the daily trauma of waking up with just a little less sight, slowly saying goodbye to all of her sight, but not knowing when it would all go.

Last night I listened to a woman talk about the things she could no longer do. No longer doing what we could once do is the focus of the beginning stages of the process of loss, grief, and, finally, acceptance of a new life.

While the words are easy to type out, doing them is not so simple. The anger, rage, depression, denial—and the ultimate loss of what was, for me, easy—now turns out to be a long journey. This journey results in each of us finding out what we’re really made of. It is ugly, and in the end, it can be beautiful.

And so, my own journey was re-established as Kindle took out the text-to-speech feature. I don’t like voice-over for books. What other options did I have? After researching it, asking questions, and finding out that what I’d need to do was reasonably priced, I ordered my two little dots (Amazon Echo dots). Yes, Alexa has arrived at my doorstep! The blue one will be upstairs in my bedroom, and the white grapefruit-sized dot will reside in my living room. I can program the dots to serve me in all my listening needs. I’ll be free to read where I want to read! Now to see what I can read! My Audible, Kindle, and music will be at my voice command. Thank-you, adorable dots.

Or maybe not so fast. I have to set them up with the phone app, and the phone app is in that faint, small font that some kid with x-ray vision designed. Good luck, kid, when your parent or grandparent comes at you yelling that they can’t read it. NO, you’ve robbed me of my dignity—I’m disinheriting you for this savage act. Good luck, kid—you’re gonna need it. Wait until it happens to you. Ah, but I digress.

My bouncy, happy self is not bouncing right now because the world doesn’t yet fully understand that by not making things accessible, they leave me out of activities I need to be able to do. My joy over my dots has faded to frustration and sadness. Once again, I mourn the loss of pleasure.

Once again, I have to struggle to do what sighted people do so easily. I have to ask for help to do something I could do it if I could see the screen. The joy of the new dots has passed; the bouncy ball is deflated, and once again I must seek help for the simple things that low vision blocks me from doing. I listen, and I feel it all: the deflated ball and two dots waiting to be useful to me. There are no other words for my sadness.

Jan 28

Please Call

This week I woke up to discover that my vision is not working as it should. I’m scared. The doc that I saw said that no, I wasn’t going blind. The doc that I saw in October of 2024 told me then that I’d maxed out what anyone could do for me as a low-vision person. New glasses won’t help. So, this coming week I’ll talk to my regular ophthalmologist, and I’ll ask her if there is anything that they can do to help me read print better. I’m typing this in 24 dpi (dots per inch). If I need to read aloud, it has to go to 36 dpi.

The above being said, I don’t like to read to others. I read slowly, and things don’t always turn out right. I have gained confidence in my public reading, but since I can’t read at my talking speed, it is something I don’t do well.

I’m scared, and it can be heard in my voice. The thought of not being able to use the sight I do have is beyond words to express. Ever since the docs put glasses on me, the work has been mine. Now, I’m feeling it all! Now, I’m beginning to look at Amsler grids. The lines aren’t wavy… and yet, something is terribly wrong. PXE and being born with cataracts, are not a good combination, and I’m the one who must cope with it.

So, I ask again: Am I going blind? I guess I’ll need to talk with the doc, and most likely get there to see her ASAP. What is going on? I’m widowed; I’m alone, and I wasn’t ready for this to happen, and yet, something is happening.

Our stories of searching for answers have their own path, and this time the adventure is not one of excitement but one of great uncertainty. Sight is something those of us who have it are thankful for—we should be. When it changes, it is traumatic, and it is needful that we find safe paths through the process.

While I was at the Visio’s Loo Erf, I observed many residents with their own adjustment issues. Most people had the need of a good therapist, and there weren’t enough to go around.

I have sat at this machine with eyes that sting. The art of adjustment is to understand when to stop working and step away. When I start work today, I’ll be dealing with seven client hours, and mails. Most things are time critical. Balance is what makes it work. Stinging eyes will be on my list to prevent. The trick is to schedule things.

As of right now, no call from the doc. Does she really understand that until I have answers, even an “I don’t know” and “We can try this” is better than sitting with what I’m sitting with now? Please, call!

Jan 1

It Pays to Rethink Things (Revisit)

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.

Nov 26

Equal Opportunity Discriminator

This past week I honored those on the margins. I did a presentation on disability. It was nice to speak my truth, and to have others receive that truth from me.

There are realities that those of us with both vision and hearing loss face. When we step out our front doors, the world can be a hostile place.

My sister, who was more blind than I have been, expressed her issues with appearance this way: “If you cut your hair, I may not recognize you, so identify yourself.” As for me, I need several hours of “face time” with you so that your facial features get imprinted on my brain. Putting it all together for me is difficult because I spent the first year of my life blind.

The first year of development is when our brains learn to recognize and discriminate objects and people. As humans, we need to be able to identify people in all their detail, unlike how we would look at simple chimps or monkeys. We need a highly effective visual discrimination ability, and I have had to learn to do it because visual recognition skills develop during the first year of life. It’s been hard to do, and I’ve done much of it as an adult when I’ve been able to fully understand what I’ve needed to do to learn people’s faces.

Stepping outside of my house also unleashes so much helpfulness in others. Then, suddenly, when I need a helpful soul, they are nowhere to be found. I think this sense of helpfulness is more about people being uncomfortable with the disabled, and needing to relieve their own discomfort. I’m fine with who I am and what I must do—even the difficult things.

Right now, the city I’m in is redoing the main street to create a better bus line. I’m cut off from my universe! The city didn’t ask me how I’d be affected, and once again I’m out in the nowhere, and they’re already two months behind.

“Where’s my village?” is something I ask more frequently now. I think those in the disabled community are asking this just as much as I am these days. With the fact that villages are disappearing, I shouldn’t be shocked that, once again, I’m posting on the cruel nature of what life can look like for those of us who must cope with a less-than-abled body.

I reflect back to being asked if I’d change it all for sight. My answer is still a resounding NO! It is all about who I am and what my disability represents. To be honest, I can’t imagine who I would have become without the disability. As much as I’d like to be able to see like you and hear like you, I wouldn’t be able to deal with it now. It would be as if my brain would struggle to make sense of it all. That really is a gift I would refuse.

Just as much as I love my petite body, I do love who I am in it. So, maybe living on the margins is also about accepting ourselves on the margins.

I have said that disability is an equal opportunity discriminator: it doesn’t discriminate at all. It doesn’t care about gender, race, age, intelligence, financial status, or anything else. If your number comes up, you’ll need to learn to cope with it. So, be kind to me, as someday it could be you needing the same help you want to give me when I may or may not need it.

I was saved the trauma of having to deal with disability later in life. In an odd sort of way, I’ve had it a little easier than my siblings, who had to greet their disabilities in their thirties and forties. I grew up this way. They each had to deal with another type of existence and coming to terms with the losses that disability brings, as well as the belief that they can still do it all.

I step out my front door, walk to the bus, and then a train, and am thankful that they are there for me. I still am dwelling on the margins of society. I’m self-sufficient in a world that prizes ability.

Sep 23

1 Comment

Dear Helpful Soul (Revisit)

Originally posted on October 24, 2022.

Dear helpful soul,

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.

Jul 11

1 Comment

Leap Frog

I’m a child of an era when disability was not understood as it is now. And still there is so much that is in the unknown category.

This weekend, as I met with clients who must deal with disabled children who are in their home, and also try to teach the children who are not disabled about the need to understand and make allowances for the differences, my own upbringing flashed before me.

For some disabled children and adults, emotional development centers around the ability to develop in pace with their peers. For others, emotional development might be delayed by two to five years.

A younger sibling might surpass the older sibling in emotional maturity and leave their sibling behind. I like to think of this as leap frog for siblings. The pain and confusion for both siblings can be an issue. It can unravel the order of things in family structure. Jealousy and questioning about treatment can surface. If the disability is one where intelligence is not affected, the pain can be greater than the norm. As I heard my clients talk about all of this, my mind flashed back to my own youth. I had not been ready for certain things, but was in other ways far more mature than my peers, who didn’t have a clue about things in life that I had already had to confront and think about. I hadn’t thought about all of it in some time. It had become second nature to me.

I went off to an out-of-state college at eighteen and returned home to lovely California at twenty. I was then in a place to understand what I wanted and needed from a school. The fact is, I made a better decision at twenty for my future education. To be fair, most adolescents aren’t really ready to make major life decisions at younger ages. I knew where my interest was and took my time getting there, and in my thirties, I felt ready to follow the education I needed to fulfill the goal I had set long ago.

In 2011–2013, I participated in the rehab program at Visio Loo Erf in Apeldoorn, The Netherlands, and discovered that a culture will influence how the disabled are viewed as being able to work or having to sit it out. I remember thinking that, of course, I’d go back to work after I’m done here. Many didn’t have that attitude and would spend their days not fully engaged in life. That fifteen-month period of my life turned out to be a learning laboratory for my future life path. I was exposed to a side of disability I had not seen before.

I’ve spoken about the value of work, and how it is physical, emotional, mental, and spiritual. I’m beginning to understand how deeply the disabled are shortchanged in the “work” department when others perceive or judge that they can’t grow to their full potential. This weekend I was reminded that there are disabilities that will prevent some children from being able to go off to school when they’re eighteen, and still others who are told that the proper path is higher education when the trades might suit them better. We need capable people who will thrive in the skilled labor area. My sink needs a plumber, and my home needs a serious electrician. There is a shortage.

Is the world demanding unrealistic behaviors of this generation? I’m beginning to think that it is. While book education is great, the world needs plumbers and electricians. We need those who can fix broken things and make them work again. We need long-haul truckers, gardeners, and construction workers, to list just a few of the areas where skilled labor is necessary. The skill of the laborer is essential to our world economy.

There are plenty of jobs that need doing, and the disabled might be good with their hands or see a path to repairing things that others can’t repair because our brains don’t see things as theirs do. The five-year-old kid who takes things apart because they want to know how it works is saying something loudly.

Skilled labor does not denote a low intelligence. The women and men who have cut my hair are skilled in understanding what my head needs to look like. They can picture it when I can’t. The carpenter knows how a piece of furniture should be made in order to function well. We need these gifted people!

Why do we force unrealistic things on people? What is it about career paths that panics so many? Keeping up with the Joneses?

I sit here writing this and think about the pain in my clients’ home, how some of it has been scripted by society, and how other parts of it might be due to not understanding the power of work that someone can do. The leap frog will be played out once again. It is played out in homes in Western society often.

I remember back to my childhood. My father couldn’t fix much at all but had a friend who was an on-call anesthesiologist at the local hospital. On his days off he liked to tinker. He said it relieved the stress from the intense work he was doing. He was our plumber. Knowing him taught me the value of the trades. And so, now I ask myself why there isn’t more of a dialogue about the trades.

A quick Google search brings up a good starting point for information on this subject: the US Department of Labor blog. Further searches will bring up articles on things the disabled should consider when opting to go the skilled labor route.

Having stated the above, and having known a guy who plumbed for the relief of it, I must mention that skilled labor needs to be valued for what it is: essential to society and its smooth functioning. High school education in the US would do well to make a case for the trades rather than singling out students in relation to “intelligence” level. The guy driving a forklift might do so because he wants to think about the book or art that is created in his head. The woman in the bakery may be using her knowledge of physics to engineer a cake that defies the norm and looks and tastes incredible.

We value the artist, and we sing our favorite songs. We marvel at the tech of a well-designed software program and are thankful when our doctor can explain what is wrong with our bodies, and why. When I need an electrician or a plumber, I’m told that I’ll have to wait because there is a shortage of skilled laborers that can do the job.

Not all work requires a higher level of education. Some work requires skilled labor and a knowledge of what makes something work. It would be nice to see students graduate and do what they want to do and have the skills to do, and not be shamed because they aren’t headed out to get more education. Our family plumber knew his physics and could save a life in the surgical theatre. My client’s kid is intelligent and understands physics. Most plumbers or electricians get the physics of clogs, flow, and making things work when things must work.

I hope that Western society will soon settle down to allowing for career paths that make sense for each of us.

Jun 3

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Snark

Learning to not walk funny is a process, and it is taking hours of focused training time. All of this is done in the home. I exercise on the treadmill, and I stand by a chair to do some of the work. I’m up to eight minutes on the treadmill, and it is still taking ten minutes per session for the rest of it. The goal is to get up to thirty minutes of walking time per day. At the ten-minute point I’ll try to leap to fifteen minutes twice per day, and then up to thirty minutes in one session per day.

The truth is that this is eating my day.

Ticktock, the clock goes round, and as it does, I still walk funny. I’ve asked the physical therapist if she sees it, and she says no. I know that when I get up from a chair, I walk goofy. So, I don’t want to sit that long. I think I’m becoming impatient with this process. When I think about it, I have to admit that it is better to be here at home than stuck in a rehab center. I can do this at home.

I’m caught up with some things, still catching up on taxes, and now I find myself attempting to figure out how to get my hair cut and my hearing aids checked. When I stop to think about things, sending me home was needed, and I need to have a driver on call until I can really walk again. Being mostly blind and not walking in a steady manner is not a good combination. Not walking well shows me how bad my vision is. It is scary to see it.

When I take notice of what it is I’m not able to see, and I allow myself to think about what fully sighted people see, I cringe. What I see when I look is the places I can’t walk safely. This last week, while heading home from the UMC in Utrecht, I was confronted with a construction mess. For sighted people who could see, the process was easy. I had to figure out that I couldn’t get to the tram and would have to take the bus down one stop, get off, and then walk to where the trams pulled in. I got lucky, and people were helpful. The shock of it all is never a good thing. Someone with Usher syndrome told me that for her, every time there was more vision loss, there was more trauma.

While I’m not affected by Usher, I do understand the risks involved in going out when you can’t see or hear as others do. It is important for me to be steady on my feet, and to get back into a safe walking mode.

As much as I post on this—and I may sound like a recording or a broken record—I have to say it again: being disabled is traumatizing.

Last week I had to call for help with something. The woman at the other end said, “Perhaps you can ask your neighbor for help.” I replied that I’d done that earlier in the week, and that while my neighbors are kind to me, I am asking you for help.

G: How would you feel if this was said to you constantly?

Rep: Oh, I understand.

G: No, you don’t.

She had nothing to say in response. She had not a clue about what I deal with daily in an abled world as a disabled woman. She never will, unless it happens to her or to someone she cares about. I hope that someday, when she’s still got all her marbles, she’s bugged by her neighbor.

May 13

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And, All I Did Was Fall.

Last week the surgeon told me that I’d see him every three months for this year, and every six months for year two, and that it would take a full year to get back to normal walking. That was a hard reality to digest. My heart sank in that moment. Will this ever end? This week I’m up to four minutes, and ten seconds per treadmill session, and I’m walking slowly. The latter is by choice. I decided to go for endurance rather than the speed, as it felt right for my body; it is wrong for my head.

Enneagram type eight people connect with their bodies more than the non-body types. I listen intently as my feet move on the treadmill, and I’m listening for smooth, even steps. As I do the mostly simple exercises, I listen, and count. Some sessions are better than other times doing the same repetitive thing. I must do it. It is challenging me to be enthused about something that, in some cases, I struggle to do. Keeping myself balanced is hard. Now, I’m being told that I have to do things that I can’t do without holding on to something. I’m scared of falling.

This break has caused a sobering feeling to come over me. My walking is more intentional. I’m more aware that I can slip and fall. I don’t want to have it happen again. I’m securing the home so that if I fall, people can get in with a secured lock system. I’m thinking of apps that enable certain information for me and about me, or maybe an iWatch that does more than show the time. Carrying the phone everywhere is difficult. It’s a reminder of what I’m feeling as I work through this process.

One of the developmental lessons that young adults learn—and here I’m speaking of adolescents and those in their early to mid-twenties— is that they are not indestructible. This lesson can be learned in any number of ways, and have varying outcomes for the young person learning the lesson. The developmental process of learning all of this is that you come to a realization that you can die.

As an older adult, the lesson becomes that you can die, and you’d better think about how to alter your life in a responsible manner. I’ve sobered up once again to a new life-altering reality. It is scary; it is annoying; it is something that challenged the ego, and we need to rebuild things. This isn’t something that is histrionic behavior: it is life telling us that it is confronting us in new ways.

As I rolled around the rehab center waiting for the leg to heal, I felt like I was wasting time, and that my carefully crafted schedule had been completely messed up and rearranged. The fall and break did the rearranging automatically. While I did walk out of the rehab center on my own, I still needed some assistance. Almost three weeks later, I returned the rolling walker and set out on a new phase of walking on my own. I’m home, unless a friend with a car comes by to take me places.

What I’ve modified is my sitting time. I also have to remember that failing to walk will cause me to walk with an awkward gait, and it all hooks into the recovery process. This growing-older-but-not-old process is different. Old is in the eighty to ninety range. There are books about all of this, and most of us don’t read them; we should read them when we’re young. When we’re young many of us don’t think about growing old, even if we have older people in our lives. We prepare for retirement but we don’t prepare for the aftermath of retirement.

This journey is one of the body and the soul. It forces me to be alert to who I am, and what can happen with every step I take. Unlike a recovering alcoholic who has done some type of recovery work and is aware of not taking a drink or using their drug of choice, there is no permanent community for growing older.

Our friendships and others we know can change on a daily basis. My mother had a friend give her a wall hanging that said something to the effect of “My friends are all dead and I suspect they think I didn’t make it to heaven.”

I have an ex-therapist who mid-career decided to specialize in geriatric patients. She was thinking ahead of her time, and I wish I had asked her what she’d learned. Once again, I pause, and I’m sobered by the fragility of life, and what I don’t know.

Somewhere I read that we should play while we’re young and do the work that we’d love to do when we’re old. The only problem with this is the aging process. I believe that society needs to teach children to take their time growing up, and to make life decisions that work for the person and not for having a lifestyle that looks good on the outside. I know people who would rather work with their hands, and who have a master’s or PhD-level of education. We need more plumbers, gardeners, welders, and more people in the trades. The trades are being abandoned.

Once again, I must stop, and I must think about my values and society’s values. It seems I’m thinking about my values a great deal more now. All I did was… fall.

Apr 9

Just As it Should Be

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.

Mar 28

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I Will Walk Out of Here

I never thought I’d be spending six weeks in a wheelchair. I also never thought I’d get so good at wheeling myself around. This ability has surprised me, and I’m proud of the fact that I’ve been able to get better at it the past six weeks. I’ve learned a few things as well.

I’ve become more patient with myself. Walking is something most people do without thinking about it. Once we’ve learned to put one foot in front of the other foot, we do it automatically. If we suffer a stroke or other brain injury, then the task of learning how to walk is something that must happen again.

Learning how to not walk is another challenge; we must wheel ourselves around just to shower, to dress, and to do all things that go along with preparing for the day. I can’t walk to what I need; right now I roll to what I need, and I must think it out. So I roll to underwear, socks, and then what I want to wear. Then, once I have that secured, I can roll to shower myself, and this will take assistance.

I’ve had to learn to safely transfer from a bed to a wheelchair. Soon it will be devices such as a walker or a rolling walker that will give me more mobility, and then independent walking, putting one foot in front of the other.

Before I leave the chair, there are lessons that I’ll take with me.

I can do more than I thought I could do in this chair. I’m fairly self sufficient, and for a person with only 12% of her sight, that is pretty darn good. I can roll this thing anywhere I need to go. I’m still building arm strength. The arm that was damaged in the minor stroke that I had is coming into new strength. I’m asking why this wasn’t done at the time of the original rehab. It is happening now, and I’ll look for ways to keep the arm building up strength. Rolling is good physical therapy.

If I need something from nursing staff, I buzz, and then go into a queue. I’m becoming patient, and realizing that others here may not be as able as I am, and so I’m learning to wait. Waiting has also been motivation for me. Can I do the transfer alone? Can I do what I thought I needed someone to help me with on my own? Each success has built on a foundation of a new understanding and wiped out the fear that happened with the fall I took. I can do this! I’m doing this! With low vision I’m pulling this off. WOW-lesson learned: when you are put into situations that limit you, the human spirit chooses to crash, to rise, or to slowly trust that there is a way to rise to new highs. Fear only has a hold on us when we believe there is no way out of where we are. Hope offers ways to get to new places.

This week they’ll x-ray my leg, and I’ll be told if it’s safe to walk on the leg again. I’ll enter a new cycle of fear, learning to trust that I can put pressure on the leg in real time, and trusting the physiotherapists to not allow me to go faster then is prudent.

Physiotherapy by its nature is going to cause me pain. My mind by nature is questioning what happened, and if it will happen again. Now I know it can happen, and I’m doing the prep work to “Gail-proof” that house with some security measures. When stuff happens, we get cautious as we have thoughts about it happening again. It is why a grandparent warns children to not get too close to the edge: it isn’t that they want to deny fun to the children, but rather because they’ve lived long enough to know that unexpected things happen to all of us. We trust our bodies to be predictable when in reality they can be faulty, and when the faulty stuff happens we wind up in the ER asking why and hoping for good news. Listen to older people because they’ve seen more than you have by nature of living longer.

It is true that what I’m talking about is not wisdom. I’m talking about life experiences and general knowing.

Ultimately, we’re led to do the journeying our souls and hearts need to do. The unexpected has a way of bringing us surprises that can benefit us. My fall was a seven-week life detour, and while I haven’t enjoyed it, I’ve learned from doing it.

Last week they moved me. The room I’d been in since my arrival had a view of the tree and the window in the house across the street. The image that I saw daily looked like the perfect cover for an old Nancy Drew mystery. They’ve move me to a place further away from the tree, and now I’m looking at the employee parking lot. The movement came with other changes as well. The biggest change is that I can see how far I’ve come in six weeks. I think the huge change is the fact that I’m expressing far more gratitude for what I can do and for those who have engaged with me to bring about the change. The charge nurse on my first day here looked me in the eyes and said “YOU CAN DO THIS,” and I was annoyed by that statement. Now I’ve done much, and in the next ten days I must launch myself to new heights. I will walk again. I will walk out of here.

Mar 5

Change, One Fall at a Time

“Raise your leg.”

It is spoken easily, and yet how often do we think about the effort it takes to lift a leg? Many of us don’t give it a second thought. We do it; we move our legs, our arms, without thought. Three weeks ago, that changed for me. I fell and broke my hip. I got lucky, as my hip didn’t shatter, and the surgeon put two screws in. I still need to stay off the hip for six weeks. I’m in a rehab center.

The “How’d you do it?” phase has come and gone. Let’s face it, citing the fall is only good for so long. What is before me is six weeks of learning to sit in a wheelchair, and being confident that I will leave here walking. It is about intention, and about understanding my reality. Right now, my reality is about getting my leg to do as I need it to do six times per day. Right now, getting my leg to raise a wee bit more with each cycle is the goal and the world I live in. Listening to my body with intention is altering the way I go about things.

This place has a two-month turnaround. Friendships aren’t made here because Europeans don’t do US-style friendships. This I know, and so I don’t expect any such thing here. I expect to work hard, to build strength, and to rehab a hip. And so I will focus on that. I watch as I tell myself to raise a leg, and I watch as the leg struggles to obey. Each day a little higher, a little easier, and somewhat stronger. I marvel at what I do as I sit in a wheelchair that is locked in the center of my room, and I am becoming more secure in many things. I need to do this, and so I dive into it.

The courage to heal from pain and trauma in one’s life is a challenge that some choose to hold on to with all they have, because they understand that the only way forward is to go through it. Every time someone writes or phones a therapist, an act of courage is taking place. Saying that you need help is an intentional act.

The evening shift just came on. The transition to less-intense activities has begun: dinner, and then the evening. My work hours are coming up; many here will retire to bed and television. I’m on the younger side for this place.

I think about intentions. What will I learn tomorrow that I didn’t know today? What new low level will I need to grasp on to and raise to a new height? It’s about simple range of motion that I don’t have yet. Just like all change: raise it higher and fight the pain. I am learning, once again, to tell myself to raise the leg higher with each try! This is how change happens. One fall at a time.

Jan 4

The Tram

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.

Nov 28

It Pays to Rethink Things