How Do You Do It?

Navigating My Writing Life With Chronic Illness

That is a question I get asked a lot.

I was diagnosed with Multiple Sclerosis in 2004. The disabling symptoms hit me like a train in the fall of 2003. Once able to hit the gym (an hour’s commute away) at 5:00 a.m., workout hard, get ready for work, arrive at the office by 7:30 for our mindset meeting to kickoff the workday, put in 8-12 hours, commute home, fix dinner, clean up afterward and prepare for the next one…I suddenly could not.

I began sleeping on my office floor, trying to gain enough energy and alertness to drive home.

First, I skipped the gym. That gave me an extra two hours to sleep. Next, I skipped the meeting, which removed the structure from my work day, but gave me a little more time.

I arrived at the office whenever I could get there. Many hours later than normal.

I would walk in, so exhausted I couldn’t think straight, head for my office, close the blinds and the door and collapse into deep sleep on the floor. Hours passed before I could wake up and face the commute home. No work accomplished. Just an uncomfortable, and unavoidable, nap on the cold floor.

People started asking if I was okay. I was definitely not okay.

Thankfully, I’m now “okay.” I’ve adjusted to & accepted, my “new normal.” Photo by Sticker it on Unsplash

Doctor after doctor did not have answers for me. One jackass went so far as to say I was fat, therefore, of course I was exhausted. I knew he was dead wrong. But in my desperation, I tried to follow his recommendations to exercise more. By that point, it was futile. I could barely get dressed and going for the day. A shower often left me unconscious and in bed for hours afterward. Showers still do sometimes.

I was a Realtor with an Associate Broker’s license. I was committed to my clients and my career. Once a full-time, energetic pursuit, my career was now on life support, in full death rattle mode.

One day, I met friends and clients at a house. It was summertime-hot outside. The house was vacant. The air conditioner was off. The heat in the house was sweltering. It was dangerous for me, and, I realized that day, deadly for my career. All of the years, education and experience were no match.

I became terribly ill going from my air conditioned car into the hot air outside and into the even hotter interior of the house. I was quickly overcome by the heat and started losing my ability to think, to speak, to command my legs and body to function properly.

I rushed out of the house and back into my car, with the air conditioner turned up on high. Thankfully, my clients were understanding. I still feel like I let them down that day. Maybe that is because there was such finality and fear involved.

Would I ever be able to work again?

No.

Some disabilities are invisible. Photo by Claudio Schwarz on Unsplash

My body no longer regulates temperature, and temperature changes, properly - a common symptom.

I’d made an appointment with the top neurologist locally. It was months away. I’d called and cancelled it in a moment of despair.

I saw another neurologist closer to home. He ordered MRIs of my brain and spine. He’d performed two spinal taps. He suspected Multiple Sclerosis. The MRIs showed a large lesion in the front part of my brain, on the left side.

The last time I saw him is vivid in my memory. We stood in the hallway of his office, his Nurse Practitioner near. “So what do I do now?” I implored, after he told me I had one big lesion, but offered no diagnosis or treatment. I was SO desperate for help.

He shrugged his shoulders. That’s all.

Oh well, you’re own your own. Good luck with that devastating illness.

My career was over, my health was in shambles, and all he could offer was a shoulder shrug? I was furious! And too tired to express how I felt, or do anything about it.

I noticed a look of disdain on the face of the Nurse Practitioner. She knew something she couldn’t tell me. That was unsettling, and somehow hopeful.

A few days later, the other neurologist’s office called to remind me about my appointment.

“What appointment?”

God intervened. Photo by Claudio Schwarz on Unsplash

Call it a miracle, call it God tending to my needs after hearing my cries, call it a human error, call it whatever you’d like. But when I cancelled the appointment, it did not get removed from the schedule.

Within days, I was being evaluated by the top expert in treating people with Multiple Sclerosis. The only thing I had energy for was gratitude. I felt God’s loving care for me. I am not religious, but I am spiritual. My heart is full of thanks.

Right there, in the first appointment, he diagnosed me with Multiple Sclerosis.

“The other neurologist said I couldn’t have MS, because I only have one lesion.”

He looked gravely concerned. He asked who that was again, as he searched my chart for the name.

When I told him, the color drained from his face. “I just hired him to work in the neurology department at the hospital.”

“Don’t let him anywhere near your MS patients,” I warned.

“No worries. I will be sure of that. And I’ll be sure to have a pointed discussion with him. You may not get all of your function back because you have not been treated in all of this time. We will infuse you today with a mega dose of steroids and see if we can stop this exacerbation. You have Multiple Sclerosis. The old diagnostic guidelines required the presence of more than one lesion to be diagnosed with MS. That is no longer the case.”

“You mean I could have been feeling better all these months, nearly a year?” I was incredulous. But too exhausted to really think about it.

“Yes. I’m so sorry you’ve been suffering.”

While we waited for an infusion chair to open up, he sent us to lunch. As I walked out of his office, I saw the Nurse Practitioner from the previous neurologist’s office, the one who eyed him with disdain when he shrugged me off. She had just joined the MS Clinic. I was so happy to see her. I later asked her about that day.

“It was so obvious that you have MS. I was so upset that he left you hanging. I was powerless to override him and I feel terrible about that,” she explained.

I don’t know if I responded. But she has seen me as a patient several time since and I am thankful for her care for me. She is well-educated and committed to making the lives of patients better.

MS robbed me of all strength at the time.

At lunch that day, I remember being too weak to cut my food. My husband had to do that for me. A first. He also had to take some deep breaths at the news that forever altered our lives.

My reaction to the news of the diagnosis was relief. Knowing the diagnosis meant treatment was possible.

My heart hurts for those MS Warriors who went before me, during the time when no disease-modifying treatments were available. Their suffering does not escape me.

We returned from lunch. I was given a massive dose of Solu-medrol via IV.

My MS journey, post-diagnosis, began.

It has been over 20 years since that day. I have been on 3 different disease modifying drugs. The first two, seldom prescribed now, came with side-effects that made me feel worse. It is hard to give yourself an injection each week that makes you feel like you have the flu for several days. The short-term effects were miserable, but I did it anyway, to stave off the long-term slide into potentially worse disability. For the last 140+ months, I have been on a DMT that doesn’t give me the “flu.” Such an improvement. Since starting it, my disease progression has slowed.

I feel tremendous gratitude than I am still able to walk and drive. I am still exhausted every single day. Neurologic fatigue is relentless. I can sleep all night and wake up feeling as though I haven’t slept in days. Sleep is no longer restorative.

But I have a rich, interesting life, full of love and laughter in spite of it all.

I am still full of gratitude.

Photo by Stephanie Klepacki on Unsplash

How do I do what I do? That is a great question and I’m not sure I have the answer. I have become stronger mentally. I know that I have to decide to do something in order to work up the energy to do it. The love and support of my husband is paramount. He keeps me laughing and living with joy. I couldn’t do it without him. He is my biggest support and cheer section. The love of God, and my family, sustains me.

My cohort in A Writing Room keeps me encouraged, inspired, and writing.

Decide to Write Anyway!

Each day, or most days, I decide to write…ANYWAY.

No matter what the day brings. When I fail. I try again. I fail forward. A practice I learned from author Jennifer Newcomb.

We all have distractions, challenges, and various issues that could derail our writing. But only if we ALLOW them to.

We are in charge, even when it doesn’t feel like it.

The world needs our words. Our readers are waiting. Please honor your creativity and join me.

Let’s WRITE ANYWAY.