diagnosed – My New Normals

Chasing Ghost

Craving history instead of making it.

“The past beats inside me like a second heart.” ~ John Banville

Lately I’ve been thinking about my life before being diagnosed. I try not to do it but it seems to periodically pop into my mind.

Reminiscing is not a bad thing. And actually sometimes the here and now can be so hard that past memories are a great escape.

But my downfall is when my thoughts dwell in the past. I get stuck and fixated on how my life used to be.

It’s like I’m chasing ghost. Haunted by a reality that has long deserted me. Continually searching for a person who has disappeared. But now I have to learn to love my current self. And that’s hard when my body is constantly letting me down. How can I love that?

When I look in the mirror I see my real life. Not the one I created in my head. My mind remembers the old me but my eyes see the new me. I don’t want to admit it but the life I left behind is still the one I want now. Sometimes I spend all day trying to get back to it.

But I’m growing tired of living in the past. Always yearning for the good old days. Craving history instead of making it. I’ve done it so much, I get lost in my dreams. Spending all my free time trying to reach an improbable normalcy. It’s all I think about. And before I know it, I’m no longer living. I’m just wishing my existence away. Sitting on the passenger side watching my life pass me by. Daydreaming about what was, instead of what is. Battling to keep my sanity as my sweetness for living is slowly being replaced with bitterness and resentment.

So as I continue to slowly sink into uncertainty, I look for remains among the ruins by diving head first into my past. Trying to retrieve what was stolen. Searching for anything that was once mine. Being haunted by the spirits of hopefulness as I attempt to ignore the fiend that lives inside of me. Screaming at the ghost. Telling them to stop haunting me, while struggling to focus on making new memories. And convincing myself, there will be better days. But my life will never get better until I learn how to stop chasing the ghost of my past.

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.

Shared Plights

We all just want to be heard.

“People will forget what you said, people will forget what you did, but people will never forget how you made them feel.” - Maya Angelou

I had my usual visit with my hygienist last week. Well, actually I haven’t been to see her in six months. So, I really didn’t remember who she was. When she entered the room we had to reintroduce ourselves to each other. I should say, she remembered me, but my MS mind didn’t remember her.

She asked me how my husband was doing, actually calling him by name. Then she asked how my MS was treating me. I told her everything was fine.

I, in return, inquired about her life. She looked at me and said, “I’ll tell you this because you can probably relate.” Then she continued to share with me her very personal recent medical encounter with ovarian cancer and subsequent chemotherapy. I was only expecting a small talk reply so you can just imagine how taken aback I was.

Immediately I realized how tenuous it was for her to even be at work. According to her story, it seemed like she had pain, got diagnosed, surgery, chemotherapy and then was right back to work all within a few weeks time. Of course, it wasn’t actually that streamlined, but it sure sounded like it.

I couldn’t help but feel a shared since of underline hope with her as she told me her story. We talked more as she cleaned my teeth and then we parted ways.

Although our plights can be significantly different, it seems at the end of the day we all just want to be heard. I think it helps us to free our innermost concerns and worries with those that can understand the best. And that’s usually someone who is in a similar situation.

Greater Than Myself

You don’t know my God!

“There is no passion to be found playing small – in settling for a life that is less than the one you are capable of living.” – Nelson Mandela

Strange how I continue to pray to a God, who has put me or has allowed me to be this way.

I went to my neurologist yesterday, a visit that never offers comforting answers or clever solutions. He does his job. He is a bona fide neurologist. Not God, that’s for sure.

Years ago, when I was first diagnosed, I received an MRI (magnetic resonance image) scan. The MRI is a diagnostic tool used to treat multiple sclerosis. It tells doctors how many lesions or scars you have on your brain (hence multiple). Every time you get a new lesion they proceed to change your medication. I have in turn tried nearly all medications that are offered including chemotherapy.

I nevertheless asked my doctor, “Why have I not had an MRI recently?” (Keep in mind he is the same doctor that already told me, I have too many lesions to count.)

He began explaining that if he did an MRI and it showed new lesions, I’ve already been on all the drugs available. Because of that, there is nothing more they can do for me.

That was hard to hear.

In the past, I would have exclaimed under my breath, “Oh, but you don’t know my God!”

But the truth is neither do I.

I do know however, that through this all, there must be someone greater than myself that has kept me going thus far.