Living with limitations

The following is a fictional story containing everyday elements of what real people living with disabilities must contend with.

Imagine you are a person in your mid forties. Ten years ago, you were involved in a horrible accident that left you a quadriplegic. You have no use of your legs and limited use of your arms and hands. To overcome these limitations, you utilize a motorized wheelchair to navigate your world.

It took several months of hospitalized care, years of physical therapy, speech therapy, cognitive behavioral therapy, and countless daily adaptive care routines to get you to a point where you can now live a relatively independent life. You are proud of how hard you have worked to have come this far. However, there is also a great deal of frustration because you can still remember the days when you did not require so many accommodations and adaptations just to live out a single day.

For a long while after coming home from the hospital, your life revolved around medical appointments. Instead of spending your days doing work that was meaningful to you and valued by others, you spent several days a week going to various care providers who help you to learn about your new limitations, where there is reasonable hope for recovery, and to master coping skills to adjust to your new way of life.

All of this hard work with your care team pays off and you are eventually able to obtain an unpaid volunteer position with a local non-profit for a few hours three days a week. This position may not yield a paycheck, but it does afford you an opportunity to socialize with others in a non-medical setting. The work you do as a volunteer also boosts your sense of self-esteem and gives you a small sense of normalcy. You once again have a taste of what it feels like to have work that is meaningful to you and valued by others.

In addition to the adjustments you have had to make due to your physical health and limitations, you have also had to make serious adjustments in your life due to financial constraints. Even though you recieve monthly payments from your disability insurance – you still have to pay for rent, utilities, food, medical care, prescriptions, clothing, and personal care items out of that meager monthly income. Social assistance programs do provide some help, but you’ve also had to learn to stretch a dollar and pinch pennies like never before. Some months, you cut your prescriptions in half so they will last longer. The last week of the month is always difficult and more often than not, you’re eating nothing but rice and beans. You feel unwell at the end of every month because despite cutting pills and stretching dollar bills – you simply cannot afford to eat healthy and balanced meals all month long.

This is your life and you have worked very hard to get to the point where you are now. You are intensely aware that every day is a gift and you carry the intention to make the best of every single day you are given. Others applaud your positive attitude and sunny disposition, but only those closest to you are aware that sometimes you still struggle with dark days. Because of all the work you’ve put into CBT with your therapist, you now have more good days than bad.

On one particularly good day, you are approached by a supervisor at your volunteer job where you have developed some wonderful relationships with your colleagues. Your supervisor has wonderful news – you have been nominated and selected to be honored at the nonprofit’s annual banquet this year. The banquet is on a Saturday evening two weeks from now. You are thrilled at the prospect of being recognized for all the hard work you have contributed to this organization. A smile spreads across your face as your coworkers smile back and extend to you words of congratilations. Everyone is pleased with this news. After all, it was your colleagues who chose you to be honored.

Later that night as you are at home thinking in bed, you can picture yourself graciously receiving an engraved plaque, delivering an eloquent speech, and hearing thunderous applause from your colleagues and friends. But then, you start to think about what would need to happen earlier in the evening for this moment to occurr. The transportation service which delivers you to and from this volunteer job does not operate at night or on the weekends. Fortunately, you are not one who gives up easily so you resolve to do some research in the morning about other transportation options available to accommodate you and your mobility aid.

The next morning, your home health aide assists you with morning activities of daily living such as toileting, oral hygiene, a shower, getting dressed, and fixing breakfast. It is a routine that felt undignified at first, but over the years you came to accept it as part of your “new normal.” You find that parts of it are made less awkward by making conversation with the aide. You chat with them about the award you have been nominated to recieve. Then she asks you “What are you planning to wear for the big night?” You realize you hadn’t considered that just yet, but will need to figure it out by the end of the week.

With the morning routine complete, you are ready to take on the day. You start on your goal of figuring out transportation by calling your local ambulance service. They have a program called Redi Wheels which provides wheelchair accessible transportation. You speak to a nice person named Ash who regrettably informs you that Redi Wheels only operates from 5am to 1pm on Saturdays. Before you hang up in disappointment, Ash informs you of two other local services that may be able to help.

You call the first one, which is called Caravan. A man answers, but he is difficult to hear because of a dog barking in the background. After asking him to repeat himself two or three times, you learn that Caravan does indeed provide 24/7 wheelchair accessible transportation. However, the cost of this service is $140 for a one-way trip. At $280 dollars for round-trip service, this is far outside what you can afford.

So you call a third provider named FM Mobility Care. The phone rings, but nobody answers. At this point, you are feeling frustrated and anxious. So you decide not to leave a message and wait until you are more calm and collected to try again.

An hour later, you’re still frustrated but more in control of yourself. You took some time to practice a few grounding exercises which you learned about in therapy. You dial the number and again there is no answer – but this time you leave a polite voicemail.

The time is now 10:30 in the morning and have the rest of the day ahead of you. Then you remember that you’ll need something to wear to the banquet. You’ve had no need of nice clothes since the accident ten years ago, so it’s time to do some shopping. While you used to enjoy going out to stores and walking around the mall with friends, that is not an option these days. You’ve learned to adapt and now do most of your shopping online.

Because you have limited use of your arms and hands, you use adaptive technology to operate a computer. The fine folks at Microsoft developed digital assistant software that is voice activated and your son was ever so kind to have set it up for you. You speak to the microphone and say “Hey Cortana, take me to Amazon.”

The digital assistant pulls up the website. Using your voice to navigate the website, you browse for about an hour to find some suitable clothing options for the banquet. You decide not to go with the most expensive option, but you don’t go with the cheapest one either. This is bound to be a special night and you want to look nice for the occasion.

Since it has been several years since purchasing new clothes, you decide that it would be wise to get accurate measurements before placing the order. Now that it’s almost lunch time, your home health aide will be arriving soon and maybe she’ll have time to help take some measurements too.

After lunch, you show your home helper the outfit you have in mind to wear to the banquet. She agrees to help take your measurements and excitedly does so – chattering all the while about how fabulous you’re going to look. As the tape measure wraps around your chest and your waist, you start to feel self conscious. Before the accident, you had been so diligent about eating right and getting regular exercise. With your new physical and financial limitations, keeping a trim figure has become impossible. As the home helper writes down the numbers, you can feel your face flush with shame.

She notices how quiet you’ve become and asks you if you’re feeling okay. You shake your head, but don’t say a word as you feel a lump forming in your throat. After all these years, it’s still very emotional to think about how different your body used to be and how much easier life had been.

After a cough and a sputter, you manage to reassure the aide that you’re alright. She nods quietly and puts the paper with the measurements on your desk. She asks if you would like help calculating the correct clothing size from the measurements. You silently shake your head to indicate “no.” If you’re going to take mathematical look at how much your body has changed, you’d rather not do it in front of an audience.

Your home health aide has known you for several months and she has learned how to read your moods. She senses that you could use help with this task, but are feeling too embarrassed to ask for help. So she picks up the paper with the measurements, pulls up the size chart on Amazon, and writes down the correct size at the bottom of the paper. In most instances, it is annoying when do-gooders jump in and help without asking first, but since she knows you so well the unsolicited help is appreciated.

After all the excitement about the banquet between yesterday and today, you’re feeling rather worn out. It’s a nice day, so you decide to sit by the window and spend the afternoon catching up on your favorite podcasts.

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