Debra Robert's Story

What were the steps leading up to your diagnosis?

When I was 45 (I'm 50 now), I was deep into an exciting and fulfilling career and felt over-the-moon, having just married to my husband Randy, the love of my life. My husband and I both worked in the same industry. The technical side of conference and concert production.

I remember I was working on an intensely detailed show prep, pulling insane hours at home, when my face started to distort itself. This felt a bit strange, but I brushed it off, thinking it the muscles in my jaw tightening from days of pushing through exhaustion to meet my deadline.

When I woke the next day, my face was contorted, completely pulled up to one side. Randy suggested I stop what I was doing and go get checked out.

My doctor took one look at me and immediately sent me off to the ER to rule out any chance of a stroke. I nonchalantly drove myself there and let my husband know where to meet me. I honestly thought I was only appeasing my doctor with a precautionary check at the hospital.

Three hours later, I was joking with Randy as we waited for the MRI results to show up. We just needed the 'all clear' to head out for dinner.

I'll never forget the feeling; how everything changed when a doctor walked in and shut the door. We were told I had a considerable lesion in my brain that indicated MS. I was directed to a neurologist the next day.

It took almost a year and a half for final confirmation that I had MS. In that time, I experienced several oddities that crept up at the most inopportune times.

I had leg numbness, tremors in my right hand and neck and bladder issues that were becoming an all to frequent occurrence. More and more these symptoms were taking control of my normally athletic, capable body. I felt as though I was being hijacked internally.

On our first Valentines Day as a married couple, I was hospitalized due to paralytic ileus. My entire digestive tract just stopped working.

The next hospitalization was because I had trouble breathing. I think too, my symptoms were exacerbated because of the immense stress of not knowing what was happening to me.

My diagnosis was confirmed on Christmas Eve, four years ago. I thought finally hearing a diagnosis would be a relief from all the waiting, the testing, the unanswered questions and the worry this all put on our families.

It was a relief for a few minutes. Then the realization that I was to be in this for life came over like a mighty wave forcing me under. I tumbled and scrambled for a way out. There was no escape. This is something we as MSers learn to live with.

Through all the waves of uncertainty, frustration and hopelessness, eventually you can learn to cope fairly well with MS.

Who has been there for you? How?

My husband Randy has been there for me every step of the way. Randy know MS and what it means better than I ever could.

His mom had the most aggressive form of MS and was bedridden for over 20 years. I got to meet his lovely mom only twice, and the last time was in hospice.

When we heard the term Multiple Sclerosis our first year of marriage, Randy was torn to pieces. He had watched his mom suffer greatly and lose all mobility and mainly any real means to communicate. Now his wife had the same disease.

What was a challenging situation for us both has since morphed into a combined effort to make the best of every day.

Randy can tell before I can that I am becoming symptomatic. He recognizes when I need to rest and when I'm pushing too hard.

What I love most about his being there for me is that he knows I have to fail a bit from pushing my limits. I need to find my boundaries, and sometimes that means I do not heed his advice. We sometimes joke about it later and how I can be intensely stubborn in my need to feel so darn independent.

But Randy knows that I am the same person I ever was. He tells me that no disease can ever take me away from who I am, the woman he loves.

Having MS and all the stuff that goes with it is not exactly what I had in mind as a newlywed. I wanted to be beautiful and free. I did not want my new husband to have to lift me off the toilet or carry me down steps.

But Randy is my friend, and he does not see things the way I do. He makes me crazy sometimes because he just can't let me stew in my misery for very long.

This is not to say we each don't have a good cry from time to time, but we know we will lift each other out and that there are going to be those moments.

We approach each day without looking much farther ahead. Randy has been there for me because he says it is what he has been destined to do.

What accomplishment are you proud of?

The accomplishment I am most proud of is that I have been able to find purpose and meaning through this disease.

I have learned to look at MS as a permission slip to throw caution to the wind a bit and just be the person I always knew I could be but never had a chance to fully explore.

I was terrified when I signed on to be a hospice volunteer. I did it anyway because something within told me to try. I now see many patients a week at their final hours.

I know these small, intimate moments are precious, almost sacred. I carry that with me, and it lifts my spirit in ways that are hard to describe.

What's your advice to someone else living with MS?

My best advice is to find something you have always wanted to do or try but never allowed yourself to and do it.

I always wanted to try pottery and never had the time. Now, I love it though I'll most likely never be great at it. I don't care.

Tear up the rule book a bit and stand or sit out in the rain.

Once in a while, do something different than from what you have every done, just to feel alive and a bit in control over your own life.

Live life in the smallest of moments or make the loudest statement you wish to make. For me, this was dyeing my hair purple. I love it, and I blame it on MS.

We are allowed to let go a bit on occasion. Go ahead, laugh and blame it all on MS. You've got permission.

What lifestyle changes have you needed to make?

My lifestyle has changed drastically since my diagnosis.

My career was over. I could not climb around a ballroom or arena filled with cables and lighting.

What was even more troubling was my concentration and ability to focus and follow a show script was just not happening. I no longer drive so I depend on disability transportation or Uber. I am now on permanent disability.

My life has transformed from one of accomplishing rather large deeds and distant travel to ones of small personal victories and travel into my yard to tend my garden. I suppose I could say, the big world I lived on the outside, now has transitioned into an even larger world, one that comes from within.

The biggest challenge in all of this, has been to fight depression and isolation. I had to learn to get myself motivated, taking small trips out of the house. I have now created a schedule that gets me out a few times a week that is not just for doctor visits.

I take yoga (a bit modified because of balance issues), I volunteer weekly for hospice and I take pottery class. This combination does wonders for me.

In hospice service, I am able to make a difference for people who are at the end of life. In pottery, I get to socialize a bit and flex my artistic spirit while working with my mind/body connection. Yoga keeps me centered and releases stresses and worry in a healthy way.

I love the things I do, though it is often frustrating to not be able to finish things or be 'as good' at things as I used to be.

My lifestyle is way more relaxed because it has to be. I am learning to not beat myself up over the things I have difficulty with day to day. I cannot afford to be an over-analytical perfectionist. I am learning to let things be as I can only do my best at the time.

The biggest changes have often brought me a level of authenticity and contentment I did no know was possible.