What Does Not Kill You Makes You Stronger

People with MS must be superheroes.

“The fear of death follows from the fear of life. A man who lives fully is prepared to die at any time.” ~ Mark Twain

I calmly said to my husband as he drove me to my bi-weekly hairdresser appointment, “I wonder when I’m going to die?”

He didn’t flinch. He didn’t even look at me. He just kept driving the car and asked, “Is your period on?”

I told him, “That is beside the point.” Even though, between you and me, it actually was on.

But my statement wasn’t driven by a mood swing. It was more introspective. Sometimes I get reflective when things aren’t going my way. Those times when life feels like a constant uphill climb. I morbidly tend to wonder when all the struggling is going to be over. When will everything get a little easier? Not that I want to rush to my demise but my mind seems to sometimes drift in that direction.

So when I find myself in that somber space, it comforts me to remember when my situation was worse than it is now. And I think about how far I’ve come.

There was a time, after a bad exacerbation, I was in a medical center for a month. A two-week hospital stay and a two-week inpatient rehab stay. Back then my utmost concern was just making it through the day. I needed assistance with everything. When I finally went back home, I couldn’t even feed myself. And worst of all, no one knew how much of my lost abilities I would regain.

So looking back at that moment in my life usually snaps me out of any pity party. But this time I remained somewhat tense.

My husband must have seen I was still a bit agitated and responded with, “The best you can do is live your life to the fullest. That’s all any of us can do. We all contemplate about death. That’s normal. But me, I plan on living for a long time. My goal is to live to be about 150 years old.”

We both laughed. But secretly, I do hope he lives a long life. It’s because I want to die before him. Is that strange? I just can’t imagine being a big burden on anyone else.

Don’t get me wrong my health is stable. I’m going to the gym as often as possible. I take my medication and I pray to the Universe for my well-being. And I understand at the end of the day, even if I don’t like my circumstances, it’s my responsibility to make the best of the life I’m blessed to have. Others aren’t so lucky. With a few exceptions, most of my life with MS has been a multitude of unpredictable inconveniences. But it’s not deadly.

So as we entered the hair salon, my husband jokingly said to me, “What doesn’t kill you makes you stronger.”

And I answered back, “If that’s true, people with MS must be superheroes.

Preserving Dignity

This disease has become such a mind game it makes me crazy.

“The kind of beauty I want most is the hard-to-get kind that comes from within – strength, courage, dignity.” ~ Rudy Dee

When I was first diagnosed with multiple sclerosis, I was filled with so much hope for about two years. Then flare-ups emerged and I began to feel as if something was off. My faith slowly started to fade. As my symptoms got worse, my confidence and bravado was being slowly stripped from me.

I’ve always been a strong person but MS has made me feel weaker than most and after a major exacerbation and years of worsening symptoms, one of my biggest challenges now is trying to maintain my dignity.

At the present time I need help with almost everything. When I go to the bathroom in the middle of the night, my husband wakes up to make sure I am all right. He has to help me hook up and empty my catheter. Sometimes it’s two to three times a day. It is very hard to keep your dignity when you have to ask someone to help you do that.

I realized that retaining dignity requires time and is experienced only in a context of empathy and mutual confidence. I have been lucky; most of my friends and family are very empathetic and still display confidence in my abilities. My problem is I need to work on strengthening my confidence in myself.

I once was able to pinpoint exactly where MS was residing in my body. I knew my weak point was fatigue in my legs.

Nowadays MS is effecting every essential part of my being including my psyche. This seems to play a major part in my lack of confidence. I can no longer predict where MS will affect me. I may go blind in my right eye for a few hours or start feeling sorry for myself and not want to leave my room. I might fall to the floor as my legs give out or not be able to get out of bed because I’m to tired.

How does one prepare for that?

This disease has become such a mind game it makes me crazy. The constant uncertainty is becoming insufferable.

Someone posed the thought of surrendering to this new normal of mine. This state includes no walking, occasional confusion, memory lapses, weakness, and infinite fatigue. It seems like a lot, but quite frankly, I thought I had already surrendered.

To me this falls into the realm of acceptance, adaption, and accommodation. All things I have already checked off my “to do” list. Okay, I have my moments. I do recognize I am a work in progress. I now realize that I have put myself in harm’s way for the sake of doing it on my own terms. But surrendering to this state takes things to a different level.

I confess I do carry a rather large chip on my shoulder. Everybody can’t see it, but it’s definitely there. It’s mostly in my mindset. I guess it would be freeing to let go of that. Like dropping dead weight.

For me, surrendering does not mean I’m being stagnant. It doesn’t mean I would stop taking my medicine or therapy.

It does mean I accept what is, while at the same time maintaining my dignity.

Still Trying

A conversation from 2011.

“Fear is not in the habit of speaking truth.” ~ Tacitus

(A conversation I had with my husband on the drive home from a party in 2011)

Were you watching? Could you see me struggling?

When I said I was all right, that wasn’t true. I don’t know if I was fooling everyone or just fooling myself. It’s just these pins and needles have me feeling funny. You can see it in the way I move. The way I use the wall to stand. All night I couldn’t feel my feet and my right leg was totally numb.

I hate going to crowded parties. I know I look crazy. Stumbling around the room, pretending it’s normal. But what else could I do? Wall walking keeps me afloat so I don’t drown.

Wait, someone said I looked drunk?

I promise, I wasn’t. I know I was slurring my words but I haven’t had a cocktail in years. That wasn’t liquor they smelled. That was steroids on my breath. I take enough of those to make anyone drunk.

Faking has become second nature to me. I’ve conditioned myself to smile through the pain. Most times, I’m over in the corner hoping no one notices me. Hiding from reality. And when I come out, I return to lying about what I’m really feeling.

But if you look closely, you can see it in my eyes. That’s where the truth is. Where nothing can hide. My eyes show my reality. My face holds the details.

People constantly ask me, “How are you doing?” My voice always deceitfully trembles when I answer, “It’s going great”. I’ve said it so much that my mouth stays dry from swallowing so many lies.

But now, I can barely form the words to tell that untruth again. It hurts when I fake like everything is okay. Because everything is not always okay. MS is not fun. I can’t continuously put on a happy face just to make everyone comfortable. I did it for years. But I can’t do it anymore. Sorry to disappoint you. It has become too overwhelming to keep pretending. My mind doesn’t work like that.

I am not saying I’ll be the person at the party killing all the fun by making everyone sad. But, from now on, when I’m feeling bad and someone asks me, “How are you doing?” I’m going the tell the truth and say, “Not to good today, but I’m still trying.”

MS Ordinary

I wish I had the boring type of MS.

“Happiness is not the absence of problems, it’s the ability to deal with them.” ~ Steve Maraboli

I’m feeling a little nostalgic today. It’s been 15 years since I was diagnosed with multiple sclerosis. That’s 5,475 days. I remember day one like it was yesterday. I was so upset when the doctor gave me the prognosis. But I was also relieved because I finally knew why I was always so tired. I also learned about my treatment options and was given a very scary introduction to injections. Boy, how I hated those needles. I remember asking the neurologist, “So I have to take a shot everyday for the rest of my life?”

I couldn’t believe I had MS. I trusted my situation wouldn’t get any worse. But unfortunately, in recent years, I have experienced some real terrifying incidents. They include one major month long hospital inpatient rehab, five EMS ambulance rides, three face first falls, one weeklong hospital stay, and countless emergency room visits.

But overall, other than an occasional minor exacerbation, most days were uneventful. Just plain old MS ordinary days and I’m so thankful for that.

Thinking back, I never thought I would be in this position. Who does?

And the hardest part is trying not to highlight the bad memories. But the unpleasant times are so embedded in my psyche; I can’t help but focus on them.

I must remember I have had far more good moments than bad. Like the way my family and old friends stepped up to help me when I needed them the most. Having a husband who has supported me from the day I was diagnosed. And how I have made some fantastic new friends by way of the Internet.

So while it can be intriguing to think back to the past, I can’t get stuck reminiscing. My main focus has to be how to handle the next 5,475 days. And hopefully each one of those days will be equally MS ordinary.