Joints

joint

1. the movable or fixed place or part where two bones or elements of a skeleton join.
2. the form or structure of such a part, as a ball-and-socket, hinge, pivot, etc.
3. Slang. Also called jay². a marijuana cigarette.
4. 4 Slang. A dirty, cheap, or disreputable place of public accommodation or entertainment, especially a restaurant or nightclub.

 

The word joint has more than one meaning. What is the first thing you think about when you see the word? Especially lately, when I see or hear the word joint, I think of the marvelous mechanisms in our bodies that allow us to bend.

There are 360 of them in the human body, and we use them without thinking about them. They are simple, yet complex.  Working in synchrony with muscles and other body parts, joints provide flexibility. They make movement across the room, across the street, across the city and across the globe possible. Walking, running, skipping, jumping, bouncing, and dancing are just some of the benefits of the joints in your body.

Joints are taken for granted until use of one of them becomes limited, or impossible. Our body joints usually exercise teamwork, working in pairs or groups. When one joint is compromised, the team becomes challenged or useless.  Ask anyone with a knee or ankle injury, and they can tell you that when one joint suffers, it doesn’t matter how well the others perform. If there is too much pain in the knee, for example, it affects the use of the whole leg. Ask someone with a worn out hip, and (s)he will tell you about the pain in the hip, not how well the rest of her/his legs or feet work.  Other joints can and will compensate some for the uncooperative body parts; but over time the increased strain may affect that overworked joint and could wear it out prematurely.

When use of an entire leg ends due to illness or injury, movement of the body as a whole becomes difficult, or impossible. Whether slowly or abruptly, the world changes from being wide open for exploring to having movements limited, and sometimes feeling like movement is an obstacle course.

When function of legs is restricted by illness or age, they are often replaced by wheels. Wheels allow movement forward and backward, but what the user gives up is all of the other movements that joints make possible. Up and down are seldom options on wheels. Side to side becomes complicated, and even forward and backward are limited to what can be smoothly navigated. The world looks and feels different when on wheels.  Without the advantage of the shock absorbers present in joints, movement is sensed differently and terrain is viewed with caution. For the able bodied, cobblestone/brick surfaces and uneven grassy areas are pleasant to look at. For someone on wheels, they are still pretty to see, but their eyes also alert the rest of the body for the unpleasant jostling that movement over rough surfaces causes. The path ahead is observed for possible hazards and access is often limited. Much is missed when legs are traded for wheels, and the advantages of joints are gone.  I miss the usefulness of my legs and their joints, but I do appreciate the many amazing joints I still have control of.

The intricacies which make up the human body give it its usefulness in work and play, and freedom of movement is something God created and designed for us to appreciate and enjoy. So today, as you move from one place to another, if you are able,…

add a bounce in your step,

skip if you can,

Shimmy if you dare,

cha cha just because it’s fun;

and marvel with me at the mechanisms in your body called joints.

 

On Mother’s Day

On Mother’s Day, I think about my mother. It’s a time to appreciate the love my mother has given me in words, expressions and sacrifices. I think about all of the good times we shared. My physical condition limits my ability to fully demonstrate the love I feel for her. I hope she understands the limitations I face and how much more I wish I could do for and with her.

Mother’s Day is also a time when I reflect on the years I raised my own children. I think about my words, expressions and sacrifices. I think about all of the good times we shared and the relationships I had with them. Now grown and gone, I appreciate the adults they have become and the good spouses they are and have. My physical condition limits my ability to fully demonstrate my love for them also.  I hope they understand the limitations I face and how much more I wish I could do for and with them.

I miss my children being close by. Sometimes I miss them a great deal, and it was at one of those times that I wrote the poem I’m sharing today.

To my mother, and to every mother out there who gave love in words, expressions and sacrifices; whether you are creating or reflecting on memories today,…

Happy Mother’s Day!

 

Loved

Created in love by our Father above,
And his father on earth, and me.
I grew him inside, and then by my side,
As we all lived as one family.

I fed him and changed him, and tucked him in bed;
Brushed the teeth in his mouth, and the hair on his head.
I hugged him and kissed him, and wiped away tears;
I held him for comfort, and chased away fears.

I played with him, taught him, checked homework for school;
Paid for his soccer, enforced every rule.
I took him to church, taught right from wrong;
Told him God loves him in words and in song.

His Dad and I modeled moderation in things;
We gave him strong roots and helped him grow wings.
We supported his choices for good things he’d done,
Celebrated milestones and achievements he won.

Before we knew it, he’d grown into a man;
And then he became your biggest fan.
I loved him completely, invested each day;
Then it was time to freely give him away.

My love still remains for the man that we grew,
But his eyes are now focused directly on you.
He belongs to you now, he rests in your arms.
Be good to each other, stay away from all harms.

God created a baby, we followed His plan;
To grow him from baby to boy to a man.
The man that you married didn’t start out that way,
We invested and sacrificed every day.

As you go through your days, busy in all that you do,
Please leave some room in his life for us too.
There is more to him than the man you first knew.
We made him and grew him, then gave him to you.

 

Mementos

If you’re my age, or close to it, you remember what Easters were like back around the 60’s. In those days, church on Easter was an anticipated event, and dressing for it was excitedly planned by many.  My mother dressed my sister and I in pretty, frilly dresses and matching cheery bonnets. Fashions have changed since then.

My mother was thoughtfully selective in what she kept from the years we were growing up – some darling pairs of shoes, little pink dresses, a blanket, and; would you believe it???, a few Easter bonnets!

It was likely about 15 years ago that Mom showed those Easter bonnets to my sister and me. We delighted in seeing them and imagining how cute we surely were in those darling bonnets. My sister hung one on her wall, where it stayed for years, and might still be. I brought mine home, but didn’t really know what to do with them, so they settled into a box of mementos from my childhood.  When I came upon them recently, an idea, a picture, appeared in my head. It took me awhile to figure out what materials to use and how to execute the idea; but I finished my little project the other night.  My hands seldom create as perfect a picture as my mind imagines, but I am glad to finally display the aged, but charming bonnets in the light of day where I can see them this Easter season and relive my little girl ways during those little girl days oh so long ago. Because of the state of the world, this isn’t a time when others will be coming to or through our door, so the bonnets won’t be seen by many, but I will experience the full measure of enjoyment from them; and perhaps they will emerge again next year.

I’m thankful that my Mom dressed us up in those bonnets, and that she saved them.

 

 

 

 

 

 

 

I found four round placemats (ordered from ebay).  Mr. Legs cut two pieces of cardboard slightly smaller than the placemats.  Placemats were sewn together with the cardboard inside.  Hats and flowers were sewn on with thread.  After last year’s spring wreath experience, we decided these will hang inside to avoid birds who are interested in nesting materials.

 

Happy Easter!

Four Letter Word

It’s inevitable. At every doctor appointment, the question is asked.  I know it’s coming, yet I’m never prepared for it.

Soon after I arrive, the nurse asks “What is your pain level?”

Asking a patient to rate pain seems like a reasonable request, but there are many variables that make the question difficult to answer.

The nurse patiently waits while my mind races with thoughts.

We generalize by describing negative sensations simply as “aches and pains”, but those sensations can be much more complex. What’s the difference between an ache and a pain anyway? Dictionary.com says that an ache is “a continuous or prolonged dull pain in a part of one’s body”, and that pain is “physical suffering or discomfort caused by illness or injury; mental suffering or distress.” Notice that the description for ache uses the word pain – if the dictionary uses one to describe the other, are they different or the same thing? Maybe an ache is slow and constant, possibly throbbing; while a pain increases in intensity or can be sharp, shooting, stabbing or steady. Pain can be waxing or waning, it can surge once or be repetitive.

As I try to answer the nurse’s question, I’m sitting motionless in my wheelchair. I quietly assess every body part, none of which is screaming for attention at the moment. Zero to 10 are the options. It’s not zero, but that leaves nine other numbers to choose from. Which number do I select?…the one I feel at the moment?   The one when I’m moving? Or the number when pain is at its worst?

I’ve been shown a universal scale; but how do I place myself on that pain scale when I don’t know if my perception of pain is weaker or stronger than another person’s? Is my tolerance for pain higher, lower, or the same as most of the population?

 

 

 

There are many different scales, created by different organizations. There are even funny ones. Googling “pain scale” is entertaining.

The nurse shares that patients don’t like the scale, but it’s a helpful tool.  I try to pick a number.

Body awareness is a challenge. As much as I can, I treat my pain as an unwanted guest, giving it as little attention as possible, tending to ignore it until it can no longer be ignored. My pain can be lessened by distractions of noise, activity or anything that requires focus.  Pain visits stronger, more boldly, at night when quiet and dark leave more room for it to be noticed. It’s best, when I can, to use whatever is available to help distract myself from it – conversation, TV, computer, music, phone.

In the habit of ignoring pain, I’m suddenly faced with acknowledging and rating it. I need information to give. Specifically, where on my body is it? Is the ache or pain a new sensation or recurring/familiar? Is there an activity or movement that may cause it? Is there a time of day when it is more prevalent? Do I know it’s coming?, or does it take me by surprise? Dull or sharp? Throbbing or stabbing? Have I noticed any patterns or timing?

The nurse smiles as she waits.

Pain is personal and pain can feel private. Most people don’t want to talk about or hear about pain and I often downplay its intensity. I don’t want to be that person who always complains about ailments; and I feel the people I encounter are more comfortable believing that I feel okay, and hearing me focus on the positive. I don’t have to share my pain with everyone, but it’s important to be truthful with medical staff. Out in the world, there can be an unspoken expectation to be strong in the face of adversity, to downplay your pain. But the doctor’s office is not the place to do that. Downplaying my pain there doesn’t help me at all.

I tell the nurse that, from the 1 to 10 scale,  the number “11” must be dead; and since I haven’t died yet, I don’t know what 10 feels like. Joking doesn’t work, she still wants an answer.

I know there is such a thing as good pain -the sensation caused when a wound is healing.  And we all know the phrase “no pain, no gain”, referring to building strength through exercise. But most pain is, well, just a pain to deal with.

I found it helpful when a nurse once watched my face and identified my pain as an 8 when I would have guessed a 4. Perhaps others can rate our pain more accurately than we can rate it ourselves.

Finally, I give the nurse a number. It represented my present non moving self. My facial expression, however, indicates that the thought process to answer the question warranted a strong 6 on the pain scale.

I realize it’s productive to recognize, identify, evaluate, and rate the pain I experience, and be able to describe it…not concentrate on it more than necessary, but be self-aware enough to consider possible causes and solutions. Recognizing that as my goal, I promise myself to rate my pain more correctly….next time.

Pain is a four-letter word. Pain can bring me to say other not-so-nice four-letter words. I don’t like to think about it, but I will take the time and effort to evaluate my pain once-in-awhile; and next time I go to an appointment, I will be more prepared for that inevitable question about the four letter word I’d rather not talk about.

Anyone else have trouble rating pain?

 

The Red Basket

I look across the room and see our red basket.  It used to be just a basket until Mr. Legs painted it and it was given a special job.  It holds Christmas greetings that trickled in during the month of December and well into January…even February. They are from friends and family all over the country. We have received greetings from other countries as well. Christmas has passed, but the red basket remains.

Like others, we receive different kinds and styles of mailed Christmas greetings.   Some are funny. Some are craftily handmade. Some include beautiful pictures with well wishes, heartfelt sentiments or pretty poetry. Some are personal pictures or picture collages. They all come tucked in envelopes addressed to us. Every Christmas, I look forward to them, enjoy receiving them in the mail, delight in reading them, and put them in that red basket, where they sit near us for months waiting for another look. I like seeing our basket.  It represents our connection with family and friends, a lifetime of relationships.  It’s a treasure box of sorts.

As a military family, we lived in different places through my husband’s twenty years of service, and we met a lot of people along the way. We formed friendships in different places and all of us moved on from where we were. We wrote, and we write, letters at Christmastime to let each other know what we did all year. We also send greetings to relatives who we seldom see because of the miles between us. Early in our marriage, traditional cards began to include letters as we summarized the year behind us. We’ve been told our letters are enjoyed, so we have continued to write them.

We receive many of the same kind of letters from others, letting us know what the year looked like for them. We have read about their travels away and their adventures and challenges at home. We have watched friends age, and have seen their children grow up through pictures in or with the letters; and we’ve seen their children’s children. We’ve enjoyed being remembered and remembering them. Every year, we are happy to hear from every person, every family, that sends holiday greetings in any form; but we especially enjoy the letters that tell us what the year has brought to them and, yes, what or who it took away.

While growing up, our children were involved in the writing and sending of the letters. They were military brats (an endearing term referencing a lifestyle, not personality) for a portion of their childhood. They were interested in hearing the news of family friends when greetings came from them. One of our children, over 30 years of age, still looks through our cards/letters when he visits, and I love it that he connects with them. Other people/families have lived in one area, so their lives were different from ours and their Christmas greetings are simpler. Thinking about this caused me to consider the different kinds of greetings we receive and what they mean to us.

I imagined the mail as the sender actually coming to the door. Cards with names printed or signed are like knocks on the door to say hello and Merry Christmas as they pass by. The cards with a personal note represent a conversation at the door, maybe a question showing personal interest in how we are doing. The letters, however, are like the sender coming in the door, sitting down with us and having conversation. It takes time to write a letter. I am glad for each greeting that comes in the mail because it represents someone who thought of us. The letters, that seem like personal visits, are my favorite.

Years of creating Christmas letters, which are summaries of our year’s activities and events, not only shares news with others, it has documented our family’s history. We keep them in a small binder and look back on them from time to time.  I’ve kept all of my Mom’s wonderfully written and always meaningful Christmas letters.  And I keep all of the newsy letters until the next year’s letters replace them.

I suppose one day, these kind of greetings you can touch may be a thing of the past. I hope not. The red basket will eventually be moved sometime this spring, but not before I look at all of the cards again; and read the letters one more time.  And when December rolls around this year, the basket will again appear to hold the new greetings.

 

Nickels

Tucked away at our house, in a safe place with other important items, are two rolls of nickels.  They are wrapped in the paper sleeves that people use to roll coins themselves. On those paper wrappings is handwritten “1958”.

Upon seeing them early in our marriage, I asked my husband what the significance was of those nickels. He explained that they were from his Aunt Barb and were special.  They stayed in their rightful place with other things valuable to us.

Years later, when looking through keepsakes, a card was found which further explained those rolls of nickels. Aunt Barb had written a poem to go along with them.

Your special year of birth
Has been recorded here on earth.
So I saved these nickels only for you,
Just a few, old and new.
So put them in a place that’s safe and secure,
As someday they’ll be worth more, I’m sure.
Since your Aunt Barb is neither rich nor cheap,
These coins are for you to keep.
To help remember me with love
When I’m in heaven up above.

With much love always,
Aunt Barb

 

She cared about each of her nieces and nephews from the moment they were born; and, as a symbol of that, the nickels were all from the birth year of that particular niece or nephew. The first of her nieces and nephews, my husband, was born in 1958.  That explained the writing on the paper wrapping.

There are 40 nickels in a roll, 80 in two rolls, and Aunt Barb had 9 nieces and nephews. That means she found, separated and rolled 720 nickels.  I can picture Aunt Barb collecting nickels for months to have the correct number for each loved child, then carefully sorting them on the floor or at a table  Then she put them together with the card and poem and gave them at Christmas.  This was only one of many creative things that Aunt Barb did to show her love to family so they would know they were special to her.

 

She sent fun gifts at Christmas – one year it was this plaque to remind us of what’s important.

 

 

 

She sent birthday and anniversary cards every year, and every year she knew how old you were and how long you’d been married; and she included that in her greeting.  It made us feel special.

 

 

Her love of family led her to become the family historian.  She took and labelled pictures of family gatherings and special events through decades.  She collected information for the family tree, gathered information and stories and put all of it together in history books about each side of the family; then she printed them for each member of the family.  She openly honored her parents and ancestors so that younger family members would know who and where they came from; and she spoke boldly of family faith, values and morals so younger ones would know which direction they should follow.  She let you know the special things about our family.  She knew how to have fun.  She assigned and carried out themes tor gatherings and loved to hear laughter.  We all knew her laugh when we heard it, even from a distance.

But it wasn’t just about what Aunt Barb did, it was about how she made you feel. She asked the right questions, gave the best responses and looked at you in a way that convinced you that that you were someone special.  Always a welcoming ear, she could console and encourage with a touch of a hand or just her eyes.

As with most extraordinary people, she had been through difficult times in her life.  She often referred to the Serenity Prayer as an important guide in her life and encouraged others to live by it.

Aunt Barb battled health issues during her last years.  She died in 2017.  It was horribly sad for her children and her husband. It was terribly sad for the rest of the family who had been so loved by her, and it was a sad day for every person who knew her. We were sad because we knew life wouldn’t be the same without her. And things have not been the same since she left.  We knew it before, but it’s obvious now….while Aunt Barb was so good at making us feel special, she was the special one.

As Aunt Barb hoped when she gave my husband those nickels all those years ago, they do help him remember her with love.   What Aunt Barb didn’t know at the time she gave them to him all those years ago, was how much I, his wife, would love and remember her too.

 

 

 

 

 

 

 

 

The Table

A lot of the furniture we own once belonged to relatives. That was the case for our first kitchen table. It had belonged to my Great Uncle Everett. Uncle Everett moved to a nursing home when I was a young adult moving into an apartment, and he generously let me have some furniture from his home. Among the things I loved, because they were his, was that kitchen table.

That same table stayed with me into marriage and moved with us as our family grew (over 20 years and eight moves!); but our growing family had outgrown it and knees fought for space in between the awkwardly placed legs.  So when we moved into our present home, we searched for a new table. At one of the places we went to shop, there were a couple hundred beautiful tables crammed into a building. It was there that we walked through a maze of options and found a table we loved. It had a feature we were hoping for – a place in the table itself to store its two large 18 inch leaves. When both leaves are in the table, it measures an impressive 102 inches long and seats 12 comfortably.  

Our present kitchen table has been in our home all of the 18 years that we’ve lived here.  Our table represents many hours of our lives together, and it has seated many. Our family of five filled that table three times a day, some days more than three times. It has held wiggly children, squirrelly middle schoolers, too-cool teenagers and college students on break. It has held countless birthday cakes, presents and cards. It held graduation cakes and anniversary flowers. It saw many a thanksgiving turkey and Christmas ham.  It has held family games, birthday cards to address and those received. Pictures show it with Christmas cookies being frosted and Easter baskets being emptied. At it sat acquaintances, new and old friends, loved ones we now miss, and our children’s childhood friends now far away.

On that table, I served countless homemade meals to my family. On it I placed fancy desserts to share with friends.  At it, I paid monthly bills and helped with homework.  It has seen our children grow up and ourselves grow older.  It has tasted spilled root beer floats and crumbs of many flavors.  It has smelled seasons and holidays, sweaty bodies and grandma’s perfume. It has heard compliments and criticisms, secrets and celebrations, stories and scoldings, jeers and jokes, “I love yous” and laughter.  It holds memories and meaning.  The table we picked out and brought home has become more than a table, it represents who we were, and are.  It has become the heart of our home.

Since the table joined us, MS has taken much from me. I can no longer cook food or serve it on the table, but I was at least able to be at the table.  That is, until the wheelchair.

Wheelchairs are large and lumbering and don’t always fit well at tables. When families gather together, wheelchairs don’t maneuver well around and between bodies. When mealtimes come, and people we love gather at the table of memories, mealtime is more than a meal, and being present there is a symbol of belonging.  I did not realize the importance of being at the table, until I did not fit there at a large family gathering.  And suddenly, not fitting felt like not belonging; and an unexpected flood of emotion forced its way through me and spilled out of my eyes.  Others were confused, and I could not find words to explain.   

They did not realize what had happened.  They did not understand all that the table means and how I value being at it.  I didn’t either, until I couldn’t be there with them.

That was two years ago.  Like other things with MS, using a wheelchair at a table has required adjustments, both physical and emotional.  While my legs do not fit under the table, I get as close to the table as I can and hold my plate on my lap.  It’s not ideal, but it’s the best solution I have found.  I won’t allow my wheelchair to keep me from the table, or my family.

Under it, at it, or near it, our table is still the gathering place for our family where we feast on festive occasions.  Whether it’s just Mr. Legs and I, with friends old or new, or with our offspring (and soon their offspring – there’s one on the way!), the table is always ready for another celebration or a heart-to-heart talk. 

And maybe, just maybe, like Uncle Everett, when we have passed on, someone in our family will want, and love to use our table……….because it was ours.  

 

Uncle Everett at his table when the table was dressed for his birthday.

 

 

 

 

 

Uncle Everett’s table in my apartment.

 

 

 

 

 

 

Family and friends at Uncle Everett’s table.

 

 

 

 

 

 

 

Our family at our present table.

 

 

 

 

 

 

 

 

 

 

 

 

(Although not in the kitchen, we do still have and use Uncle Everett’s table.)

 

 

Identity

 

 

 

 

 

 

Because of MS, what I used to be is not what I am now.  Because of MS, what I am now is not what I will be in the future. 

But, what I am is not the same as who I am.

I am who I am.  I am still who I used to be.  And I will stay who I am.  MS has challenged and grown me in many ways, but the core of who I am remains the same. 

When what you are changes, who you are stays the same.  Who I am does not change. 

What I am is crippled, but who I am is complete.

What I am is broken.  Who I am is whole.

What I am is the outside.  Who I am is the inside.

What I am is temporary. Who I am is permanent. 

What I am is superficial.  Who I am is personal. 

What I am is how strangers see me.  Who I am is how God and my loved ones see me.

What I am is only my body.  Who I am is my soul and spirit.  

I am confident enough in who God made me to be to accept what I am….what I have become.  

My identity = “What” will be, will be; but I’m still me.  

 

Driven

In the spring of 2011, I pulled out of the driveway and drove about a mile to our city’s tennis courts where my son was playing on the high school team. When I turned into a parking spot in front of the courts, I knew that when I drove home it would be my last time in the driver’s seat.  About an hour and a half later, I pulled back into the driveway, climbed out of the car, and said goodbye to my car keys.

It was a safety issue, not just for me, but for anyone else who would be on the road at the same time.  I just couldn’t trust my feet on the pedals anymore.

I left part of my freedom and independence on the counter with my keys that day.  I loved to drive, and giving up my keys was a big loss for me; and it was a loss for others too.  I could no longer make a simple short trip to the store on my own or share driving on long trips.  Losing my ability to drive meant that I lost a key component of relationships, as I could no longer go to those I care about.

I traded my keys for a lot of time alone in my home when I would rather be in the driver’s seat going places.  As nice as my home is, there’s a monotony in always meeting with friends here. I’ve grown accustomed to missing family gatherings. I have found myself looking longingly out the window and wondering vicariously if the people driving cars are on their way down the street, down the highway, or down south for vacation.

When it came time for a newer car, I shared in researching, negotiating the price and feeling the excitement in leaving the dealership in our car; and then feeling the stark reality that I would never drive that car. Decades earlier, I instituted a family rule that whoever was driving could choose the music in the car. Seven years ago, I swallowed hard when I felt the consequences of a rule that was still in place, a rule that had always seemed fair, until then.

After years of not driving myself, I have noticed less interest in recognizing landmarks and knowing directions, a decreased sense of direction and sense of adventure. There are things I don’t miss – I never have to worry about getting a speeding ticket, causing an accident or even changing the oil.

It was the right decision to give up my keys when I did. I knew that time would come, and I knew I would know when it did.  I was aware at that time that I would miss being in the driver’s seat.  Seven years later, I still sometimes find myself reminiscing during the day about driving, and at night having dreams that I’m driving.  I had to give up my keys, but I’m grateful for all of the years I did drive, the countless places I was able to go, and the memories I have from those times.  And I am now grateful f0r our accessible van, and for the willingness of Mr. Legs to be my driver. (Click here to read my post about getting out and my chauffeur.)

You may be bothered about brushing the snow off your car, feel frustrated with other drivers, or feel irritated about the time and cost of auto maintenance; but I hope you will also appreciate the ability to drive.  Feel the independence of being in the driver’s seat, the power of navigating on the open road, and simply enjoy it.

 

As a child, I was driven places.  At 15, I was driven by the desire to drive myself.  My dad and a driver’s education class taught me to drive defensively.  At 16, I was given a license to drive.  At 19, I owned a car.  At 23, I got married, moved to a different country and learned to drive aggressively.  At 27, I was driven to drive cautiously as I carried the responsibility of a little life inside my car. Some years later, I felt the gravity of having three young lives I was responsible for in the car with me.  At 34, I moved to a country where road rules and lane lines were seen by drivers as mere suggestions.  At all these ages and stages in between, I embraced and enjoyed the ability to drive.   At 52, as a result of MS, I was driven to stop driving. 

 

The Enemy Called Guilt

Helping or hurting?  While raising my kids, I asked them that question as a way of getting them to think about how their words and/or actions affected the people or the situation around them.  Repeating that question over time enhanced my own sensitivity to the possible impact on others from what I myself say and do.

As most of us are, I’m well aware that what I do affects others. But now, what I don’t do has a greater impact than what I do.

MS is a thief of abilities.  The impact of MS and its symptoms causes lack of sleep, lack of time, lack of energy – not just for those with MS, but for those who care for them.  Because my MS is progressive, the list of what I cannot do grows longer with time; and the impact on others grows as well.

Once in a position to help others, I now require help from others.  MS has forced me from giving to taking, and that infringes on others’ time and freedom. Empathy, once a helpful character trait, now works against me. The sensitivity I feel toward others is especially strong when I consider how my inability affects the able people around me.

I did not choose to have MS.  I did nothing to cause it, and there is not anything I can do to change it.  I have no control over it.  I could not stop it from happening, and I cannot stop it from progressing,  Nevertheless, it is my MS, and I feel responsible for it.  What results is guilt. 

Guilt affects what I do and don’t do every day.  When I see that something should be done but cannot do it, I must decide how necessary it is that it be done; then make a decision if it is important enough to infringe on someone else’s time.  There is a  frequent weighing of whether an act is more of a burden for someone else to do, or more of a burden for me to do without. My brain weighs need vs. want, convenience against imposition, personal preference vs. mutual benefit.

At this point in my life, the weight scale has tipped drastically on the taking side, and the answer to “helping or hurting?” leads to a growing cloud of guilt.

Not wanting to impose on others’ time or convenience, I hesitate to ask for help…waiting for a better time, which may or may not come.  There are times I choose not to ask at all – guilt keeps me from requesting things I want, and sometimes prevents me from asking for what I need.  Even when I am encouraged to ask, guilt makes it very difficult to do so.

 

Guilt comes in increasingly higher waves which erode more of my self worth each time one washes over me.  As guilt becomes bigger, I become smaller. Keeping it from overtaking me is a struggle.

 

I know that others in my position struggle with the same thing, but that doesn’t make it easier.  Those afflicted with illness are not alone in their feelings of guilt. Loved ones and caregivers may feel guilt too and a helplessness that they cannot fix us or make our pain go away; or they may feel guilt that they have able bodies while we experience limitations.

“Guilt is the rumbling strip in our lives.” -Unknown

Guilt is a positive thing when it keeps us from harm or trouble, or from causing harm to or trouble for others. Facing guilt requires humility and can overcome pride or selfishness. When it is not the result of intentional bad choices, but uncontrollable circumstances, guilt can be a heavy burden.  It is an enemy I battle against.

Like anything negative, guilt can be replaced with something positive.  I am trying to focus instead on growing my appreciation for those who help me. I am thankful for the people who do for me what I can no longer physically do for myself.   I am also grateful for the givers in my life who listen to me, try to understand my condition and emotions, encourage me, and pray for me.  I can, and do, appreciate all of them.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Read about other enemies in this blog’s category “Enemies”.