wheelchair Archive

10

A Piece of Peace

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“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.
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Original article appeared on -The National MS Society Blog

13

Savior Of Hope

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“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.

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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.

10

Standing Up To MS

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“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.

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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.

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11

The Devil Inside: Living with MS

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Part 1: Shaking the Devil

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” ~ Khalil Gibran

It can be hard to stay positive when so many negative things are happening around you. My cursed search for a meaning to the madness that is multiple sclerosis (MS) consumes my life.

Living with MS is a rollercoaster. Some days are up and some days are down. Happiness is here and then it’s gone, leaving a cloud of smoke behind. And just when I think I’m getting some relief and can finally breathe clearly, it strikes again.

It’s like the devil has found a home inside my body. Nipping at my faith. Growling. Constantly showing his teeth. Scarring my spirit. Marking my soul.

The power MS has over me is so strong, I start to believe I’m chained to it and there’s no escape. It feels so bad; I would trade anything for a cure. That’s when I can’t see beyond the fog of the disease and I wonder if the pain will ever let me go. Like nothing good will ever come again.

I hate how it affects me. It is mind-numbing the paranormal way it constantly tingles in my fingers, manipulates my thoughts, and destroys my confidence. I’ve cried so much, I feel like I’m drowning.

I just don’t comprehend what’s happening. If I keep getting weaker, what am I going to do? My mind says, “You can handle it,” but my body refuses to follow its lead. The worst part is, I’m beginning to sense there is nothing I can do about the progression. I listen to my doctors, but sometimes I feel stupid for taking all these different types of medicine. The side effects are draining. It’s like I’m killing myself as I try to kill MS.
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Part 2: An Isolated Nightmare

It’s the stuff of nightmares.

But thanks to time and loved ones, I’ve been able to craft a new normal. Be it with a limp, cane, wheelchair, or scooter, I’ve managed to face and live through it all.

Still, I never imagined it would get this bad.

In the midst of losing my physical abilities, I’m also afraid of losing myself. I’m scared MS will take away me. But my competitive nature refuses to let that happen. It’s become my goal to continue being me, in spite of MS.

One of the most aggravating things about MS is the social isolation it begets. As if society has forgotten about me.

It’s just so hard to fit in when I can’t drive. I have major fatigue issues, and sometimes I get confused during basic conversations. My limitations cause me to feel cut off, especially when I’m surrounded by a group of able-bodied people.

It’s particularly hard at parties and gatherings. Normal interactions turn awkward or involve just a smile or a wave, but fail to develop into standard encounters. I’ll sit in the middle of a room and people will walk by me like I’m not even there. Since I just can’t do “normal” things, it’s as if I’ve just disappeared, gone missing without a trace.

I think the problem is related to a lack of understanding. When I tell people I have MS, they look at me like I’m a unicorn. It’s so misunderstood, most people shy away from spending time with me. They’re not sure how to treat me or what questions to ask.

To counteract the loneliness, I continually reach out to people who are on a similar path as me. When I do, I always seem to have a great time. I find myself talking for hours and usually making some new friends.

My family, friends, and other people with MS provide that much-needed support and companionship. I even use them when they are not present. When my feet go numb, I think of them. When my fingers don’t work, I think of them. When I try to walk and fall face first to the floor, I think of them.

Nothing else compares to the love of my family and friends. That love allows me to freely accept help and accommodations, ultimately giving me a better life.

Scared initially, I’ve now accepted my diagnosis and discovered how to incorporate MS into my life. I’ve learned to soldier ahead. Well, at least I try to. And as I look towards my future, I know there will be dark days, but I also can see the sunrise.

Despite the trials and tribulations, I choose to focus on the positives and leave the rest to faith. I can continue to harp on all the negatives or I can choose to be happy. I’d rather live my life no matter what obstacles come my way, have fun, and hope the universe hears my prayers while I try to stay positive about my life with MS.
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Original article appeared on Healthline.

15

Road Trip

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“A vacation is what you take when you can no longer take what you’ve been taking.” ~ Earl Wilson

I’m going on vacation for two weeks. I do this once a year. Most times, I go somewhere close to home. But every once in a while, I fly to a place several hours away. My upcoming vacation will be different from both of those scenarios because this time I am taking a 6-hour road trip.

The difficulty with doing this is, my MS has always given me problems when I ride in cars. So I guess you are wondering, if that’s the case, why do it. Well, my biggest obstacles have been bladder issues due to frequent urination. Three months ago, I had a suprapubic catheter surgically implanted and I’m calling this car ride my first big test to see if it was worth getting.

During past road trips, we would stop every hour and a half so I could go to the restroom. We not only had to locate a restroom on the highway but, because of my wheelchair, it had to be an accessible restroom. Also, frequently getting in and out of the car would usually wipe me out before we even arrived at our destination. I’m hoping the catheter eliminates both problems.

So, I’m off for a couple of weeks and with any luck I will pass the test. I look forward to a fun, peaceful and MS free trip. I hope you find some time this year to relax too. We deserve it.

23

Parade Days

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Last week I was in the hospital for two days after having an adverse reaction to my latest prescription. The symptoms were so bad that the doctors first thought I had a stroke. It wasn’t until all of my test came back negative that we linked my sudden change in health to the new medication.

Before this happened, I was excited because it is Carnival time. I have been going to Mardi Gras parades in New Orleans, Louisiana for over 30 years. But this year just wasn’t the same. I can’t put my finger on it but I didn’t have as much fun as usual. My guess is, since I really hate being in a wheelchair, being at a parade in a wheelchair just wasn’t enjoyable. I don’t like when people stand in front of me blocking my view. It’s funny because everyone is nice until the floats start throwing trinkets. Then it’s every man for himself. Also, bladder issues can cause a real headache especially since the portable restrooms provided by the city are not wheelchair accessible.

But my best guess at the source of my newfound melancholy feelings toward attending parades is the fact that I have been extremely tired lately. I am so weak these days that it’s hard to enjoy myself at events, especially ones that take so much energy. Parade days are all-day affairs that can last 5 hours or more. And there are usually multiple parades. The recent one I attended was actually three different parades. This is something I did all the time, but nowadays it’s just too much for me. And being only one day removed from the hospital didn’t help either.

After I made it home from the parades, I decided I would not attend anymore because they are just too taxing on me.

Moments later, following my declaration, I saw a picture posted by Steve Gleason* at a Mardi Gras parade. He helped me put my overreaction into perspective. So now I have decided that I won’t totally stop attending Mardi Gras parades. I’ll just adjust how long and how many I attend.

Happy Mardi Gras Everyone!

*(Steve Gleason is a former New Orleans Saints football player who is now battling ALS – Lou Gehrig’s disease)

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27

Mourn The Loss

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While grief is fresh, every attempt to divert only irritates. You must wait till it be digested, and then amusement will dissipate the remains of it. ~Samuel Johnson

It’s a good thing that my caregiver/husband and I get along, because I never would’ve imagined depending on him so much.

In the beginning of this newfound dependency on others, I was not a happy camper. I probably was defensive to the very people that were trying to help me. It’s just that we all have this picture of what life should look like and my reality just was not matching up.

Nowadays it seems I need help with just about everything. And to make matters worse or more complicated for all involved, I don’t need that help all the time. This confuses the person, normally my husband, as to when to help and when not to help.

Does that make sense?

I know he is only concerned about me. In the meantime, I’m so busy trying to hang on to my last bit of independence by continuing to do what I can on my own. I think this is a good thing.

I also have to accept there are things I can no longer do safely by myself. For instance, I need help getting on and off the toilet. It’s not every time I go, mostly just during the night or early in the morning. The other day, I had a nasty fall in the bathroom and it scared the life right out of me. Mind you my bathroom was newly made handicapped accessible. So, it seems no matter what, falls can happen.

I need help with transferring from one chair to another. That is, transfers from my scooter or wheelchair to the dining room table or to my favorite reading chair. Something I used to do with no problem.

I’ll be honest with you. It’s hard. To make it easier I quickly mourn the loss then I move on. The thing is, if I persist on focusing on what I’ve lost here, I will lose and MS will win once again. And it has taken away so much from me already.

I try to remember that our job as MS fighters is to make the most out of what we can do, no matter how small.