You are currently browsing the tag archive for the ‘multiple sclerosis’ tag.

You know what I realized today? That I wished all my doctors had multiple sclerosis.

Wait. What?!?

Hold up. That’s not what I meant at all!

Let me re-phrase that. What I meant was, a doctor with MS would have unique insights that might be helpful to me as a fellow patient.

This is what it’s like to write a blog post with MS-mind. My posts begin with disjointed ideas that eventually make sense. Still, I’ll never publish a post until Lori or SueBE has had a chance to proofread it. 

Often, I find that I’m trying to explain symptoms to doctors who see through a lens that’s calibrated by conventional wisdom. Once, I told a physician that food, liquids and pills can get stuck in my throat due to trouble swallowing. She suggested liquid medications instead of pills, but that wouldn’t be helpful, as it would take several swallows to get down, as opposed to a pill, which is only a gulp or two of water. 

That’s why I’m encouraged to read a blog like The Cricket Pages, because it’s written by a young lady who’s licensed as a social worker, but also struggles with anxiety. Her description of getting lost in a parking deck after taking her licensing exam was nerve-wracking just to read, and so relatable.

So while I don’t wish illness on any doctors out there, as this article about a doctor who became a patient shows, it can change their perspective. That can be the case in terms of faith as well. If you’ve been through hardships in your life, you know how it feels to soldier through it alone. You can be a healer yourself. All it takes is a word of encouragement and a heart of compassion.

Advertisements

So, I’ve written before about my health issues, and while I don’t want to bring anyone down, I do like to share what I’ve learned from having MS.

Like the time I took my son, Cole, and his friends, Luke and Nick, to the movies a few years back. On the way out, I asked if they’d seen another movie that was out at the time. “So did you guys see Thor?” Without batting an eye, Luke replied, “Yes, we saw it last week. You took us. Remember?”

But he knew I didn’t. The upside is that these kids are like family, and they’re used to my sieve-like memory. It didn’t phase them. When people are understanding of your limitations, it makes you feel supported.

That’s why I was so thrilled to come across this article about a cafe that employs dementia patients, called “The Restaurant of Order Mistakes.” So you ordered a hamburger? Well, how about some dumplings instead! This shows that if people are aware of your story, they give you more latitude.

It goes back to my theory that there’s always a story, and everyone is dealing with something, often something that’s not visible to the naked eye.

People have taken the challenges of their own pasts and turned them into positive action.

These men took the pain of coming to another country penniless and hungry, and turned it into a kind deed, offering people a free meal if they have no money.

Sometimes a small act of compassion can restore one’s faith in humanity. This hairdresser with a posh client list reaches out to people on the street with his “Do Something for Nothing” campaign, offering haircuts to the homeless. It’s amazing to see what this simple kindness can do for a person who often feels invisible. One gentlemen looked at himself after his haircut and asked, “Why did you do that for me? It’s not an everyday thing.” The hairdresser’s answer was, “I loved hearing your story.”

It’s nice to know we can write the story as we go, and we’re all in it together.

 

Theology vs. The ObviousOne of the members of my health care team is a medical assistant who works at my neurologist’s office. Her name is Luz, and she really lives up to her name – she’s a source of light and warmth. I feel better just talking to her on the phone.

So Luz called to tell me the results of my recent MRI, but my phone started to get hinky, cutting out some of what she was saying.

“Just wanted to let you know….”

I swear, I heard her say to me, “there’s no good news.”

Bracing myself for the worst, I went to another room and said, “Would you mind repeating that please?”

She said, “Of course. Just wanted to let you know, there’s no new lesions.”

Phew.  I nearly fell over with relief. One of the ways my neurologist tracks the course of my multiple sclerosis is by looking at the number of white lesions on my brain, as shown by the MRI. If there are no new lesions, it’s a good sign. Even though my symptoms may not be improving, they’re not getting worse.  I’ll take that.

My mind heard Luz say, there’s no good news. Luckily, even though I did tense up when I thought there was bad news, I was still able to stay in that centered place in my soul – some call it “entering into the rest of God” – and I didn’t over-react.  My heart skipped a beat or two, but I waited to hear what she was saying the second time before I went into a tail-spin.

Now, I don’t always maintain such equanimity, oh no.  Just ask my teen-age son. Yep, he’s got stories for you!  But it is possible to leave the burdens in God’s hands so you don’t feel so heavy-laden. I’m so grateful we can always let go and let God.

At the store last week, I noticed that a big SUV was parked across three handicapped spots – laterally.

I started to walk by, having had to park farther away than I’d wanted. No point in confronting someone who obviously has no consideration for other people. If somebody does something like this, clearly, this is a person who doesn’t give a flying fig about anyone else.

But something stopped me and I walked over to the driver’s window, which was rolled down.

“Excuse me, Miss, but I have to ask you.  Why are you parked across three spots?  Now nobody can park here!” I said.

“Oh, sorry, baby,” she said. “I was just trying to get the shade from this tree. I’m waiting for my disabled aunt, who’s inside shopping. All you had to do was ask and I would move.”

Ask? These are handicapped spots. Perhaps her aunt was disabled, but this lady seemed able-bodied. I’d just come from the infusion center, where I’d had my monthly dose of medication for MS. I had a gauze bandage wrapped around my arm. My feet were hinky and I was really limping that day.

“Grace,” I said to God. I had to walk away, because I was about to unleash on her, Jersey-style. I was about to ask her what the bleep was wrong with her. And what kind of idiot she was. I had to bite my tongue, literally, so I didn’t release this venom into the world.

Waiting for my prescription took about a half hour, and I went back to my car. I noticed that the SUV was now parked correctly, in just one spot.

The lady waved me over and apologized again, profusely. She said that after I spoke with her, a man had come over and yelled at her for taking up three spots.

“I was just trying to get the shade,” she said, looking wounded. “All he had to do was ask. No need to get upset with me.”

I realized that sometimes we may not realize how our actions impact others, and worse still, how our words are heard.

She kept saying, all you had to do was ask, as if saying this would make it better. It would make us understand she’d meant no harm.  But we received it as a slap in the face.  We’re dealing with disabilities here. Why should we have to ask to park in spots reserved for us?

It reminded me that even when we all speak the same language, we may not understand each other at all. As I left the lot, I said a prayer for her and thanked God for helping me to restrain myself from saying things I’d regret. I’m glad grace came right on time and realized that it was true what I’d heard: all I had to do was ask.

I’ve got an iron-clad faith in God, to be sure, but my friends know that I’ve also got a lot of new-agey ideas and curious quirks.  I tend to see signs from God in almost everything.  I also believe that I’m supposed to learn from hardship, so I analyze everything that happens like a CSI investigator.

My theory is that I was scheduled to develop MS at 63, but due to the stresses of an awful job, it came on early, at age 36.  I had put the memory of that terrible workplace behind me, until a few months ago, when the cab brought me to the door of the Infusion Center where I’d be receiving treatment every month.

This can’t be right.  Can it?  I didn’t realize I had said this aloud.

The cab driver said, “Yes ma’am.  This is the address you gave me.”

I didn’t speak for a moment.

“Ma’am?  Are you all right?”

I nodded, but I wasn’t sure.

Even though I’m generally somewhat shy, I actually felt the need to pray out loud.

“Is this where you want me to go, Lord?”

The cab driver was unfazed.  He felt comfortable answering for the Maker of All Things, apparently.

“Do you need what they give you here, Miss?” he asked quietly.

The answer was obvious to me.

“Yes.  I really do.”

“Then that is your answer.” 

New Jersey may be the world center for Wise Cab Drivers.  He got a very nice tip, and I thanked him.  I felt comfortable saying “God bless you,” which I’m very cagey about saying to anyone.  It has, on occasion, offended a person or two, so I don’t offer it freely.

You see, this was the place where I had worked for fourteen years, and for the last few, it had been a nightmare.  It was where I first started to notice that the headaches never went away, and that my fingers were starting to go numb.  It was where a deep depression set in, and a constant state of anxiety took hold. It’s where everything in my life seemed to start to unravel.

But it was no longer the same place.  I tossed a coin in my mind and decided to see it differently now.  It was a place of healing.  It had been totally revamped and reconfigured, and the place that had been my office was now a large room where patients sat with their IVs, being tended to by the caring nurses.  There were pillows and reclining chairs, relaxing music and fresh coffee.  If you didn’t know better, you might even mistake it for a day-spa.

“I used to work here, kind of…” I said to the receptionist after she signed me in.  “Really?” she asked.  I said, “It used to be a different company, and I sat right over there by that window.”

“Weird!” she said, and looked over at the window.  “Does it look the same?”

It didn’t.  And I decided it would no longer feel the same.  I realized that God moved in mysterious ways, and maybe He was allowing me to achieve some kind of closure on that era of my life.  That place doesn’t even exist anymore, my child.  Those days are over, and all I have for you here is healing.

I sat back in my chair, feeling the cold liquid coursing through my veins, grateful for so many things: Cab Drivers with an Inordinate Amount of Life Experience; the medicine that would bring back the feeling in my feet and hands; open doors and second chances.  I thanked God that hearts and minds can be revamped and reconfigured, and that even after a deep, dark night, joy still comes in the morning.

Have a Mary Little Christmas

Advertisements
%d bloggers like this: