Multiple Sclerosis Archive

9

A Piece of Peace

ID-100203866
“Of course there is no formula for success except, perhaps, an unconditional acceptance of life and what it brings.” ~ Arthur Rubinstein

Did you know that acceptance is a choice that you have full reign over? Now they tell me! I do have some choice in this horrific disease.

But, there’s a catch.

I saw a tall case of stairs the other day, it nearly brought me to tears. Why? Well, mainly because today I’m downgraded to a wheelchair. While not too long ago I would have happily opted to take on those stairs, now I can’t. So, in the cloud of my sorrow, before I could even collect myself, my husband dared me to think about what I could do. All I wanted was to pay respect to the part of me that’s likely gone forever, but dwelling on those memories encourages my denial of the acceptance of what is now.

I have heard that acceptance is a roadway that can lead to enduring happiness. If that’s the case can someone please get me the Book of Acceptance 101? Because every time I think I’m there I get a nice slap in the face. They say that part of the beauty of life is that it’s forever changing.

Well, I should have one up on that because I’m living with an unpredictable incurable disease. I have no choice but to go with the flow. If I don’t I just create more turbulence for my own self. And who needs that? I know it’s tempting to lean towards anger and frustration. But we help ourselves so much more if we don’t.

“We need to develop the habit of looking at whatever happens through a positive mindset, instead of a negative and defeatist one.” ~ Ana S.

Now to be honest, I’m still working on that one. I mean I’m not a pessimist, but that’s a tall mountain to climb. I also must reluctantly admit that things and people have come into my life since my diagnosis that otherwise would not have – a host of supportive others battling this very same thing. People who understand; first hand. Not exactly a reason to elect to have MS, but it’s what happens when you slowly seek out the positive in a not so positive situation.

The fact is I can no longer climb that monstrous flight of stairs, but there are still things that I can do. If I can just hold on to that frame of mind, life becomes more bearable for both my husband and me. After I dried my eyes, passed those darn stairs, and remembered my abilities, I discovered to my own surprise … a piece of peace. Who knew?

I guess I should again grudgingly thank my husband.
___________________________________________________________________________________________________________________
Original article appeared on -The National MS Society Blog

18

Run Away

tightrope

“We don’t create a fantasy world to escape reality. We create it to be able to stay.” ~ Lynda Barry

I’ve been thinking.

I hate MS!

I know what you are saying. That’s pretty obvious. Who in their right-mind likes MS?

But you don’t understand. I mean I really hate MS. I hate writing about MS. I hate talking about MS. I hate every part of having MS. The hate is so strong it consumes me.

I use to just want to run away from everything and everyone. But now I know I just want to run away from my illness. Just breakout and leave MS behind.

But I can’t.

My friends always say they need a vacation to get away from their jobs, their kids, their spouses. I tell them to do it, just run away for a little while. Everyone needs a holiday from their problems and troubles.

Too bad I can’t take my own advice. It’s impossible for me to escape my problem. It goes with me everywhere I go. It’s a MonSter that lives inside of me. He makes my body tingle. I can feel him in my feet. Like a tyrant, he controls my hands and makes me drop things. He constantly laughs at me and my confusion makes him bold.

Some days are so bad; I begin to feel like a trapped animal. On those occasions, when I just want to crawl out of my MS cage and be free, I close my eyes and fall into my dreams. My dreams tend to rescue me from the beast. They keep me alive. I just bow my head, clear my mind, and run away.

15

Moments of Clarity

When I reach for help someone is always there.

“Just when you think it can’t get any worse, it can. And just when you think it can’t get any better, it can.” ~ Nicholas Sparks

Everyday it seems MS puts me to the test then waits to see how fast I fall apart. This morning I woke up to both of my hands not working. I could not control them. I tried to make a fist and nothing happened. The only movements were some feathery sporadic involuntary twitches. No matter how hard I tried, I could not manipulate them to move. My hands felt like they were paralyzed.

It just seems so unfair. Just as I am beginning to accept my walking and energy limitations, my hands are starting to fail me. I was so frightened. My heart jumps around every time MS tries to work its black magic.

I felt like crying but didn’t because I realized, how in the hell do I wipe my face if my hands are immobile. So I stayed calm and waited. After about ten minutes, the dexterity in my hands returned and I was able to start my day.

Lately, whenever these types of events occur, I have decided to reclaim the moment by quietly bowing my head, clearing my mind and thinking positive thoughts. The days when MS is trying to control every part of my body and I have lost all hope, I close my eyes and fall into my dreams.

My dilemmas have never been solved by my newfound exploits but they do provide me with moments of clarity that allow me a chance to decide the best move to help ease the situation.

These moments have also helped me remember my adage. You have to fight your fears, contest your nightmares with love and faith, and live in the moment.

13

Savior Of Hope

hope_photo

“Try to be a rainbow in someone’s cloud.” ~ Maya Angelou

During a recent emergency room visit, a battery of test produced no results to why I fainted. The doctors concluded, the event was due to multiple sclerosis and I was released from the hospital.

On the drive home my husband was talking to me but I barely noticed what he was saying. All I could think about was the emergency room doctor’s words, “You are going to be discharged, because there is nothing more we can do for you”.

While my husband navigated through traffic, I sat on the passenger side of the car watching people walk by. I began to tear up. I just kept wishing I had their lives. They looked so happy. Some were laughing and having fun, while others were busy shopping. Not a care in the world. But most importantly, they all looked so healthy.

“There is nothing we can do for you”, is the definition of a chronic debilitating disease. But when I heard it live, out-loud and directed at me, the reality of it crushed my spirit. And the circumstance put me in the mist of one of the saddest moments I have ever experienced.

As we continued home, I hopelessly gazed out the car window at all the happiness around me. It was like being haunted by ghost from my past. Watching a poignant reminder of better times. My veins ran red hot from my fear I would never achieve such joy again. I was trying to smile but something inside kept the pain running through my body, depressing every part of me. Sending hollow thoughts throughout my head. My hopes had been shattered and I felt trapped by my situation.

When we approached a red traffic light, 4 blocks from my home, I made eye contact with a woman. She was sitting in a wheelchair parked on the sidewalk, clutching three grocery bags filled with clothes. The lady was visibly dirty and appeared homeless or at least in dire straits from the way her hair was matted to her head and how she was dressed.

We stared at each other for the entire light cycle. Right before it was time to accelerate through the intersection, she must have noticed the sadness on my face and gave me a big smile and a brief wave.

Hope

That simple act of kindness, felt like a whisper in my ear saying, “Everything is going to be ok.”

In return, just as the light turned green, I quickly smiled back at her. Then we zipped away. Over the next 5 minutes, I continued to think about the woman. I began to feel so ashamed of myself for having a personal pity party.

I can’t believe, despite her own trials, she was still able to recognize my pain and offer me some compassion.

Once we got home, I felt so bad, I told my husband to bring me back to the spot where I had seen the woman. But by the time we returned, she was gone.

I’m not sure what I would have done if she had still been there but something was drawing me back. I think I would have at least said thank you for being so nice or offered her something she may have needed.

Throughout our lives, we give and receive help and never know where it will come from or when it will be needed. I guess this was my turn for someone to help me and I am so glad she did. She renewed my belief in faith, hope and happiness.

14

The Blessings

That’s me in church looking for answers.

“Believe that life is worth living and your belief will help create the fact.” ~ William James

For years I have been randomly saying prayers. The process brings me clarity and seems to slow everything down when life gives me more than I can handle. But lately, I pretty much have given up on performing the ritual of kneeling while praying. It just takes up too much of my energy and nine times out of ten I need assistance to kneel down and get back up. The same goes with praying while standing. I can stand, with help, for about 30 seconds without swaying but that’s about it. Then after all that standing I require ten minutes of rest. I needed another option.

My alternative to kneeling and standing is to sit quietly and bow my head. I can do it in my wheelchair or on the ground in the park.

Also, instead of designated times, I say prayers whenever I have a free moment. It can be at anytime, like when waiting in a line or riding in the car. I just close my eyes and say a little prayer.

Unfortunately, in recent years, most of my prayers have been purely selfish. I ask for the same thing every time. I just want to be “normal”.

After praying that same prayer nearly everyday, I began to think my efforts were in vain. Now I believe I was missing the lesson.

Every time I wake up and feel great for five minutes, that’s my blessing. When I am able to make it to the bathroom without help, that’s the blessing.

The small victories are my blessings. A “normal” person doesn’t see a blessing in being able to walk alone to get the mail or putting on clothes without help. I now see how special life is and recognize the miracles we perform and take for granted everyday.

I just want to say thank you for the blessings and allowing me to notice them.

13

Reaching Goals

277810_391069827617426_1322088751_o

“If I thought about it, I could be bitter, but I don’t feel like being bitter. Being bitter makes you immobile, and there’s too much that I still want to do.” ~ Richard Pryor

Life is a habitual attempt to achieve goals. Reaching, with arms out in front of us, trying to grasp our greatest moments we believe have yet to come. It’s a grand pursuit we all have in common. But in that constant chase, the difference between most people and myself is the fear my main successes in life are behind me. I worry my best days are now only realized through reminiscing.

Once MS took over my body, I re-entered the world as a different person. I have a pain no one sees, my confidence is tested everyday and I have to accept I can’t do all the things I use to do. The hardest part is learning to live with my new normals. I need to not fight it so much; instead I have to learn to accomplish things within my limitations.

I still have goals I want to reach. Just on a smaller scale. Like in the past, I had ambitions to jog at the park three times a week. These days I can no longer run. So instead of running, my new goal is to ride my scooter around the track twice a month.

I must remember I don’t possess my future. No one does. Reminiscing can be fun but when you play the past over and over in your head, it becomes impossible to concentrate on happily living in the now. My new objective is to focus on what’s happening at this instant. Living in the moment. And no matter what, I have to keep trying to achieve goals.

10

Standing Up To MS

IMG_1133

“Either I will find a way, or I will make one.” ~ Philip Sidney

I have been bound to my wheelchair for two years. I can no longer safely use a walker or cane. I am also not strong enough to “wall walk” anymore. Therefore, the chair has become an extension of my body, which I rely on 100% to provide me with mobility.

I realize using a wheelchair is not a horrible experience or the end of the world. It’s actually a really good thing. It enables me to get around and be more independent than I would be without it.

But I must admit, since I am always sitting, some days I just want to stand up for a little while. Just to give my backside some relief from the constant pressure. Usually, I only get to stand up when I am transferring to another chair or too lay down. But during a recent visit to my physical therapist, I was introduced to a walking sling.

IMG_1132

The sling helps lift me from a seated to a standing position. It provides upper body support and gives me enough freedom of movement to engage in exercises and physical therapy. When I first saw it, I didn’t believe it would actually help me. But it does. My core feels stronger.

When I’m in the sling, I can stand for 20 minutes. Hopefully, as I use it more, I can extend my time even further. I am usually so tired after my session I have to take a nap.

Multiple Sclerosis has taken away so many of my abilities. With the walking sling, I get a chance to stand up to MS. And in my own way, give the disease the finger.

IMG_1134