Accepting Your Diagnosis – Welcome the Beast?

By Lauren Kovacs

This is a process that is very different for everyone. It is not easy to face the monster. It is often a lonely quest. Questions, nervousness, unknowns, anger and shock tend to be its odor. Stinky.

My story is too long to write. You would get bored. It was so long ago and re-living it does not help me much. It changes and we change with it. Faith, for me, has been my only rock.

It started when I was 16 and involved nine months of optic neuritis. This meant no learning to drive. Loss one. It also blotted out the right side of the gymnastics vault. After a swollen nose, I knew vault was not for me. There went any chance of placing in the all around. Loss two.

Then, at 21, I went numb  from the neck down and was told I had a stoke. It was MS and the neurologist told me not to research or read about it, but the monster was chasing me. Being a college student, of course I researched it.  I was only 21 and I had two cousins with it.

I think we all go through similar phases, however, fear is the most common. Fear of the unknown is big. Lots of “what if” makes a cloud around us. It becomes a life-long companion. It is a fog that never seems to completely lift.

Anger makes that cloud black. I still get mad, even after over 20 years. The cloud re-darkens with each ability I lose. Writing by hand was the darkest cloud for me. Signing my name on my kids’ homework was essential and it was gone.  I still deal with that monster.

I had many years of it being there, but MS didn’t limit me much. The cloud of stink followed me, though. Now, the limits are huge. The last six years have been lots of loss.

It was a delayed reaction, I guess. What I leaned is to “do it now.” I did some of it by learning Irish dancing, single jumps in figure skating, Appellation Clogging, and more.

Don’t put off what you can do today. You learn to take the bull by the horns. I never knew I would lose my ability to swim. Luckily, I took my boys fishing before the fear of drowning set in. Mom in a life jacket is not cool.

Sadness over loss is common too. Yes, I am sad I can’t do any art or walk. I used to play several brass instruments. Fat lips or chipped teeth were not worth playing. Throwing a ball straight would be nice, too. Softball was no longer for me. Thankfully my boys did not like baseball.

I lost me, I thought. Loss is very hard.

Reinventing ourselves and learning something new can be fun. I was more than my athletics, art, and music. I was still me. Sports, music, and art were only the surface me. Part of the process is digging deep, before loss of an ability.

I did not learn this early enough. Part of being diagnosed is exploring deep. I lost a lot, but I learned from what I lost. Crack the shell and see what is under it? I did needle point in college as a way to relax. Can’t do that now so, I want to try arm knitting. No sharp things involved. I read to relax or binge on a show.

I am not sure we really accept the MS monster. We learn to live around it. A pile of the boys’ Legos was something I learned to step around. Try to avoid MS, but know it is there. You can go through the pile of Legos, but it is gonna hurt. Go around MS.

A cup of tea and a biscuit is all most of us can offer our unwelcome guest. Yes, the MS monster lives in my house. It leaves the toilet paper roll empty and takes my stuff without asking, but until we can evict it with a cure we have to learning to live with it. Co-exist!

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About MSAA

As a national nonprofit organization, the Multiple Sclerosis Association of America is a leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a toll-free Helpline; award-winning publications including a magazine, The Motivator; website featuring educational videos and research updates; S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Manager™; a resource database, My MS Resource Locator; equipment distribution ranging from grab bars to wheelchairs; cooling accessories for heat-sensitive individuals; educational events and activities; MRI funding and insurance advocacy; and more. For additional information, please visit http://www.mymsaa.org or call (800) 532-7667.

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