Month: June 2024

Once you get home, there are many items that can help you with your recovery, such as adjustable beds, assistive devices, bidets, bedside commodes, and specialized pillows and wedges.

I used to be a teacher.
Before that, I was a city supervisor.
Here and there, I’ve been a writer.

Now, I am a nothing.
I sit in a house, day-in and day-out
without anyone to talk to.

I live for Mondays, when the home nurse
comes to take my blood work and change
my PICC Line dressing
because it is 20 minutes of conversation
I don’t typically get.

My hobbies are gone.
My job and volunteer work are gone.
I’m completely unreliable
because I never know if I’ll have the energy
or ability to do anything.

I’m so hungry sometimes
while food spoils in the fridge
because I don’t have the strength or
the energy to actually cook it.

Anything I try to make my life better
fails
just like me.
A complete and total failure
sitting alone day after day.

Be patient, they tell me
Your body needs time to heal
as months and months pass
and very little changes.

The years pass
and very little changes.
And all I can say is,
“I used to be . . .”

Often, cervical cancer metastasizes in the mouth, tongue, or throat. Here are some products that can help when going through head and neck radiation and aggressive chemo. I hope you can find some products that will make your life easier during this trying time.

When you have a chronic illness or are living with multiple life-changing conditions, it impacts every aspect of your life.  Progressive disabilities are thieves who steal our inclusion in daily life, as well.  Things you once did and enjoyed slowly and relentlessly are stolen from you, until even with adaptation they merely bring you frustration and irritation instead of the joy they once contained.

Your friends and former colleagues drift away because they don’t know what to say or what to do.  Phone calls, video calls, and even social media posts and messages grow more and more difficult because it is hard for people who care about you to see you in pain, especially when there is nothing that can be done about it.  Communication between you and former dear friends becomes infrequent, shorter in duration, further apart in frequency, and often ceases altogether. 

It becomes harder and harder for you to maintain friendships and relationships as your world becomes smaller, and the only events or experiences you have to share are medical or pain-related ones.  While your friends discuss the activities in their lives, you really have nothing to add unless you discuss your illness, and that gets tiresome to all involved. 

While they are happily telling you about a concert they attended last week, you are all too aware that you haven’t been to a concert in several years.  As they tell you about all the goings-on at work, you are reminded that you are no longer able to work, and very well may never be able to work again.  As you listen to them tell you about a recent vacation, it saddens you to recall that you are no longer able to enjoy such holidays.   If they talk about a wonderful restaurant they recently visited, you regretfully remember that you are unable to eat those types of food anymore, that you can’t have any alcoholic drinks anymore, and that even sweet treats are something from which you must abstain.  It doesn’t make for an enjoyable conversation for either person. 

When you are dealing with a variety of issues (such as sun sensitivity, food restrictions, urinary incontinence, fecal incontinence, overwhelming fatigue, blurry vision that prevents you from driving, extreme nausea, intractable pain, taking strong medications that leave you drowsy and unable to logically converse, etc.) it can make social events all but impossible. 

The unexpected nature of many chronic illnesses can cause you to frequently have to cancel plans, even though you really want to participate.  When you frequently cancel, or when it takes a herculean effort to include you, people stop asking you, and your social life can become non-existent. 

You may have to cancel because you are extremely unwell that day, because of an unplanned hospitalization or medical treatment, or an unexpected reaction to a new medication.  Sometimes, you have to cancel for reasons you really don’t want to share – like the lack of a handicapped restroom where you are going, a long walk from the parking lot to the event site, or the realization that the event is held in a historic building and you’d have to climb stairs, which you can’t do.

When the world is not as accessible as it needs to be, when illness takes your strength and energy, and chronic fatigue and malaise leave your thoughts muddled and confused, it is difficult to feel included and hard to be involved. The barriers to inclusion sometimes seem insurmountable and leave you with a quality of life that you wouldn’t wish on your worst enemy. How many times can you be the scorekeeper in the kickball game of life?

I tend to be a person who thinks of what I can do rather than what I can’t do.  I tend to look for the joy in situations rather than let myself be unhappy.  Just for today, I am allowing myself to do something I have never fully done before – think of what I can’t do.   I sometimes start along this path, but become overwhelmed by the sheer enormity of what I can’t do.  Then I have to stop simply to spare myself from the magnitude of it. 

First, there are the things I have never been able to do.  These include things like snow skiing, water skiing, digging a hole with a shovel, holding a baby on my hip, sitting cross-legged, being pregnant or giving birth, playing contact sports, running races – things like these. 

Second, there are the things I once could do, but no longer can.  This list is so much longer.  These leave a sorrowful place in my heart.  I once could ride a regular bike, sit on the floor, run, climb a tree or ladder, walk a mile or two, sit on low furniture, walk on soft sand, wear flip-flops, ride a horse, go canoeing, swim in a lake, roller skate (although that always was a struggle,) bend and pick things up from the floor, lift heavy boxes, go camping and sleep in a sleeping bag, climb stairs, do intricate embroidery and needle crafts, hold a book in my hands to read it, open a soda can or a water bottle, walk my dog, do martial arts, manually type without having to use speech-to-text, use a cell phone without hitting multiple buttons by mistake and disconnecting, partner dancing, walking across a grassy field, mowing my lawn, line dancing, vacuum my house, mop the kitchen floor, taking a bath instead of a shower, riding on the back of a motorcycle, playing the guitar, standing in front of a classroom, eating at a restaurant (due to extreme food restrictions), traveling in any way other than a medical transport, holding a baby in my arms, singing songs and hymns in a clear, beautiful voice, and even working a full-time job.  It also includes things that I’d prefer not to mention, like being sexually intimate, or reliably continent.  The list is so long that I’ve only been able to touch upon the substantiality of it.    

You learn to lie about how you are doing.  People ask how you are doing, but they don’t really want to know unless it is mostly good news.  I can’t blame them for that – it is human nature.

I can’t bring myself to lie when I’m asked, “how are you?” by saying “I’m fine.” so I usually respond, “Oh, I’m hanging in there.”  Or “Well, I can’t complain.  Well, I could, but who wants to hear that?” with a well-timed laugh.  It ends the query and allows me to quickly change the subject.    How many times can you tell a friend that you are not doing well, or that you are getting worse?  “How are you?” isn’t really a question in our society.  It is a greeting with an expected response of “I’m fine.” or a very brief mention of a small (and somewhat insignificant) problem.

We all have something about ourselves that we wish we could change – the shape of our nose, the texture of our hair, our figure, etc.  At times, these things can make us feel like something is wrong with us, or if only we could change some basic feature, our lives would somehow be enhanced or that true happiness would await us.  Some things we can change, by getting a perm, having our teeth straightened, or devoting ourselves to a rigorous exercise routine and healthful diet. 

For others of us, what makes us feel like an outsider cannot be fixed or changed.  People with facial skin discolorations, burns, or growths, people who are missing body parts, or who have congenital malformations that can’t be changed – these people are in a different category than those who simply abhor their Roman nose, their frizzy hair, or flabby thighs and thick ankles.

There is part of a poem I learned as a child that says, “I cried because I had no shoes, and then I met a man who had no feet.”  It is supposed to convey the message that the boy with no shoes has nothing really to complain about because others are much worse off in the world.  In my mind, I despise this poem.  While it is very sad that a person has no feet, it certainly doesn’t minimize the fact that the boy with no shoes has a problem, too.  He still doesn’t have any shoes! 

I’ve always thought that minimizing someone’s problem by reminding them that others have it worse conveys the message that your issues, your problems, are not really a big deal, and you are wrong to have even commented on them or concerned yourself with them.  Well, if I lived in Wisconsin in the winter and had no shoes, my “problem” is very real to me, regardless of who is in a worse condition. 

When we remind others that their problems aren’t really significant, we are judging their life journey, and finding their needs and concerns to be inconsequential.  I don’t believe in minimizing a person’s needs or insecurities by insisting that their perceived problem isn’t so bad.

For most of us, others barely notice what bothers us.  But for a few of us, our issues are hard to ignore.  Even the most compassionate person has a hard time not turning away from a person with severe, disfiguring facial burns.  We certainly don’t think “Wow, I’d like to get to know that person.” when we walk past them on the sidewalk.   We look away and then get away as quickly (and as unnoticeably) as we can.  (And later, we feel very bad about having done that.)

While not as extreme as having disfiguring, gruesome facial wounds, those of us born with functional disabilities fit into another category – those who used to fit in but who are now an outsider.  Those of us with progressive disabilities and chronic illnesses often find ourselves pulled from “fitting in” to being an outsider as our illness progresses, and our limitations increase. 

Many times, our loved ones react in strange ways to our progressive medical and physical changes.  Some blame us as if we caused it to happen.  Some feel that we should be able to do everything we did before if only we’d really try and stop being lazy. 

Some pretend the changes aren’t even there, which leaves the person with the progressive disability or chronic illness feeling gaslit.  And some of our loved ones think they can “cure” us, and become angry with us if we aren’t willing to try every crackpot idea they’ve read about (even though our own doctors insist it won’t help or could actually make things much worse.)  Often, it can be as if our loved one blames us if their efforts don’t lead to a cure.  This is especially difficult, because it changes (and often ruins) the dynamics of relationships, at the same time both are struggling to cope and need the support of the other so much. 

While I’m not claiming that one type of loneliness is harder to deal with than another, I am stating that there are different types of loneliness.  Some we can change, by learning social skills, seeking out like-minded individuals, or putting ourselves in situations where we will meet others whom we might enjoy.  For others, the progression of illness and the unreliability of wellness pulls us away from almost all kinds of social inclusion.   We no longer fit-in with our old friends, and we are too isolated by our medical issues to make new friends. This type of loneliness includes the mournfulness of great loss and an overwhelming sense of defeat.

Current research shows that a household with a disabled adult has 28 percent more expenses than a non-disabled adult household to have the same standard of living, which is currently an average of an additional $17,690 a year. (Source: National Disability Institute, The Extra Costs of Living with a Disability in the U.S., 2020.)   This doesn’t include the extra expense for households where an adult is in active treatment for a life-threatening disease, such as cancer or lung disease. 

People with progressive disabilities and/or treatment for active serious illnesses, can also face bankrupting medical expenses even with excellent insurance, and progressive disabilities and life-threatening illnesses often result in the person having to be underemployed, or unable to earn any income at all.  Even for those who turn to disability (SSDI) the amount is less than 40% of their prior income, while their expenses are significantly more than when they were able to work. 

Do me a favor?  Write down your annual income.  Now, multiply it by 0.40.  That will give you 40% of your current annual income.  Now take that amount and multiply it by 0.28.  You will need to subtract that amount from the 40% of your previous income. That will account for the extra expenses that a disabled person encounters (not an ill patient, just a disabled adult.)  Now divide that amount by 12.  That would be your base income as a disabled adult.  (There would also be other expenses, such as insurance premiums, co-pays, and non-covered medications, but we’ll leave that alone for this example.)

So, let’s say you typically earn about $50,000 per year from working.  That means that 40% of that is $20,000. That would leave you $1,667 per month.  Even without accounting for the 28 percent additional costs that disabled adults incur, could you live on $1,667?  Would that cover your mortgage/rent, car, gas, car repairs, home/renters’ insurance, health insurance, taxes, medical co-pays, non-covered medications, dental visits, eye exams and glasses, groceries, wi-fi, basic streaming, etc.?  What if you have a pet?  Would you be able to cover vet costs, dog/cat food, etc.?  So instead of having $4,167 per month as an employed person, you would have to live on $1,667.  Could you do that?  Would you still be able to do the things your friend that are in your previous earning’s bracket do, or would you no longer have the funds to participate?  Would you struggle to keep your home or pay your rent, to pay your property taxes, or pay your car insurance? 

This loss of income, and constant financial struggle, leads to not being able to live the lifestyle the person was accustomed to.  The lack of money often leads to further isolation as the person can no longer afford things like a night out, sporting events, meals at restaurants, or participating in gift giving.  Even being invited to something as innocuous as a potluck is difficult when you are food insecure, especially when none of your friends or colleagues can even conceive of being in that situation, based on your former lifestyle. 

The change in lifestyle caused by lack of mobility, the effects of strong medications, hospitalizations, medical procedures, pain and fatigue are only the tip of the iceberg when it comes to the isolation, anxiety, and loneliness of having a chronic illness or a progressive disability. The compounding effects of financial instability, food and medication insecurity, and medical treatment costs leads to stress and distress that causes trauma and anxiety which lead to even more isolation and loneliness. The financial burdens of chronic illnesses and progressive disabilities are more complex and far-reaching than most people realize.