It’s A Touchy Subject

I’ve never been a real touchy-feely kind of gal. I believe public displays of affection can make others uncomfortable and I’m sensitive to people’s personal space. However, I have not hesitated to touch the shoulder of the person I was talking to to deepen a conversation, take the hand of someone who was hurting, and to greet and depart from those I care about with an embrace; and I found great pleasure in being affectionate with my children and, of course with my husband in private.

When Multiple Sclerosis weakened my legs and made me unsteady, a fear of falling replaced some physical touch. Seeing children quicken their pace to greet me with an enthusiastic hug or jump up into my arms caused apprehension instead of joy, and my arms and hands were used to halt them instead of welcome their show of affection. When I began using a walker, it provided a visual warning to others that I was unsteady and it was a safe barrier to fast moving bodies. Using a walker required the use of my hands and arms as much as my feet and legs; so no longer were my hands available to use for caring gestures toward others. The barrier of a walker also meant that others reached out less often and those who were still comfortable hugging me gave more than I could manage to return. The posture of sitting did still allow some opportunities to use my arms to hug, reach out a hand in tenderness, and hold my husband’s hand and cuddle on the couch.

When MS took more of my abilities and my scooter came on the scene, my arms and hands were even more busy with controlling steering and speed of the machine I was driving. My focus on people around me had to be more about seeing feet to avoid rolling over them than about seeing the faces and souls of the people attached to them. When able bodied, we don’t realize how our lower bodies automatically move without needing to concentrate on garnering strength in legs or the placement of feet, or dividing our attention to manage controls. When I was in a scooter, some people who knew me well still approached me with outstretched arms. Eventually, transferring my body to and from the scooter’s seat required moving to a chair with arms, which created a barrier to the previously enjoyed closeness of side-by-side sitting on a sofa.

It was a slow transition to my wheelchair. It sat available in my home for over a year before I began using it for its higher level of comfort and security.  More and more hours of a day were spent in my wheelchair instead of my scooter, until the scooter was reserved for out of the house excursions. Then, the day came when I could no longer transfer between my wheelchair and my scooter; and, as much as I hated to admit it, the little scooter I had grown to love for its ability to maneuver in small spaces was no longer functional for me.

There are different kinds of wheelchairs. Some can be folded and easily put in the trunk of a car. My wheelchair is more like a car itself than the foldable kind that fits in a car’s trunk. Because of all of its wonderful functions, it is very large and very heavy. With its armrests, leg guides, headrest, control station and massive wheels, it can seem like a personal armored tank. It keeps me safe, but also confines me. It can be rather intimidating when it comes to others breaking through the armor. Hugs to and from my wheelchair can feel awkward, even with close friends and family.

I am continually grateful for those who see me instead of the chair I’m in and are not intimidated by the metal and electronics surrounding me. They effortlessly break through the awkwardness to place a hand on my shoulder or hug me. But oh how I miss the freedom to easily give and receive the caring expression of touch I used to enjoy. It has been a loss of a physical human need with an emotional impact. It was a slow change over time, giving up closeness with others one step after another.

Many of you have experienced an abrupt change. “The virus” and social distancing have placed most of the population in our country and the world in the position I am in. Hands and arms are kept at length, not for lack of ability, but because we are being told not to touch for health and safety reasons. Fear of touching now replaces familiarity. Research has proven that physical human touch, or lack thereof, affects emotional health and can lead to a condition called “touch starved” (click here to read about it). I know, from my small experience, how this can affect a person. I hope that, while we are being careful and safe, we don’t as individuals and a society, forget how to reach out to each other in caring ways. If you live in a safe environment with loved ones, enjoy every opportunity to tenderly touch those you care about. If you are able, make a difference in someone else’s life with caring touch. If you are alone. isolated by this virus and rules that control our lives, take heart. I’ve learned that God can reach out His invisible but powerful loving hands and arms in ways that can comfort our souls and fill our needs so completely that it cannot be explained. I pray you will ask God to do the same for you – touch your life and fill any unmet needs you may have.

Thoughts on hugs:

Hugging teddy bears is an option when hugging people isn’t, and there are even directions for hugging yourself! (Click here to read the benefits.)

There are virtual hugs….

Poems about hugs…

Benefits to hugs…

And invitations for hugs…

Posted in Mobility Equipment, MS/Multiple Sclerosis, Uncategorized | Tagged , , , , , , , , , | 6 Comments

UpLIFTing

About twelve years ago, when my MS made it clear that it would continue to progress, we made the decision to remodel our home. The goal was to remove whatever obstacles that would be in my path when my legs were replaced with wheels.

I went from walking to using a walker, to depending on a scooter, and I now spend most of my time in a wheelchair. That’s a lot of wheels. The remodel of our home has given me the ability to continue living here through each transition.

My entry into and exit out of the house is by way of a a platform lift in our garage. It was a practical choice, was installed well by the company that sells it, our contractor built a great landing for it, and it usually works smoothly without any problems. As with all mobility aids, it requires regular maintenance. When all of its parts work well, the lift’s motor purrs; but when the gears become dry, especially in cold weather, it’s high-pitched squealing demands attention.

These photos were taken shortly after the lift was put in place.

The company that installed the lift has also serviced it and has kept it running well. On a cold day in March of last year, it began to screech again. I called and requested regular maintenance. The company sent someone to look at it. Those who service this kind of equipment have a multitude of products they maintain for customers. The technician located the problem. He found a suitable grease at our local hardware store, he greased the gears and put the lift back together, all while helpfully answering our questions; and he was pleasant when I asked to take his picture and agreed to it being here.

It’s a messy job to remove the old, used and dirty oil and then apply the new, and it’s complicated to take the unit apart. With an additional travel charge for the service call because of distance (we live two hours away), and the inconvenience of his driving time, the serviceman was more than happy to show Mr. Legs how to grease the motor’s gears himself.

The serviceman finished the job and the lift ran smoothly…until that ear-piercing screeching began again and was becoming increasingly worse. I contacted the manufacturing company asking what they recommended for grease, and I ordered the specialized aeronautic lubricant that performs in extremely cold weather. Mr. Legs took the unit apart, removed the old dirty grease and applied the new, recommended grease to the gears and then reassembled the unit. My freedom was restored!  We hope this maintenance will last a long time before the lift screams for attention again. 

I stepped back and looked at the complicated piece of machinery. Somebody somewhere found a solution to someone’s problem; and years later, the product that resulted was available to me and provided me with a solution to overcome the obstacle of getting in and out of my house. I’m grateful for the talented brains that created the lift, for the thoughtful contractor who calculated every measurement well and built the structure around the lift to give me a smooth entry into our home. I’m grateful for the helpful and accommodating company that ordered, installed and has maintained the lift. And of course, I am grateful for Mr. Legs who so willingly learns something new and always keeps things running.

DW Auto and Home Mobility

Bruno Vertical Platform Lift

Posted in Mobility Equipment, MS/Multiple Sclerosis | Tagged , , , , , | 6 Comments

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.

 

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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.

 

Posted in Family History, MS/Multiple Sclerosis, Poems | Tagged , , , , , | 4 Comments

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!

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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?

 

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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.

 

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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.

 

 

 

 

 

 

 

 

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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.)

 

 

Posted in Family History, Family Matters, MS/Multiple Sclerosis, People Stories | Tagged , , , , , , , , | 11 Comments

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.  

 

Posted in MS/Multiple Sclerosis | Tagged , , , , , , , , , , , , , , | 2 Comments