Thursday, November 3, 2016

11/3/16- The MS

In the writing world, MS is an abbreviation for manuscript.  In technology, MS is an abbreviation for Master's of Science.  In the autoimmune disease realm, it's Multiple Sclerosis.  I know all 3 abbreviations well, but the one that has impacted my life the most, is Multiple Sclerosis. My friend Emma had Multiple Sclerosis.

It's been 4 years since Emma passed away, and I carefully choose my words when I talk to others (who did not know her personally) about her.  I tell them she lost her battle to MS. That is the truth.  It's the why.  I feel that in those couple of minutes conversation that is all they need to know- that I lost a good friend to MS.

But it is not the how.  Emma was struggling with MS and decided in January of 2012 to end her struggle.  She committed suicide and left a note to her parents, citing she wanted peace, to escape the unending pain of MS and the resultant depression.

I believe she was 24 when she received her diagnosis in 2007 or 2008.  It's hard for me to remember the details of her diagnosis because I was going through my own medical struggles from end of 2006 to beginning of 2008.  My own RA diagnosis came in  spring of 2008.  And in a way, Emma helped me get a diagnosis.

She came to a party that Bobby and I had in  late 2007 or early 2008 (again that time is blurry for me).  I told her at the party how I felt like I had the flu every day. I told her I was so fatigued and nauseated, but frustrated that the doctors (I've seen so far) couldn't figure out what was wrong with me. She told me about her own symptoms and how a doctor at the Mayo clinic diagnosed her with MS.  She suggested that my symptoms sounded similar to hers (the extreme fatigue) and that I should get a MRI to (hopefully) rule out MS.

I called an imaging place that performed MRI scans.  They asked me who the doctor was recommending this test.  I sheepishly said no doctor had ordered it, that it was me, but I really needed to know.  I was asking for this test before the act in Arizona where you, the patient, can order your own tests (at least blood tests, I'm not sure about MRIs).

I must have given a good speech because the worker said she'd assign a doctor to the test; one that they normally worked with.  I got the MRI, which lead to meeting the doctor (who the imaging place assigned).  He told me that everything was good/looked normal in the MRI. Then, we talked about my symptoms, and he tested me for Mono, Valley Fever, and RA.  I had Mono and a high RA Factor. The diagnosis of RA happened shortly after.

Emma gathered us for the Phoenix MS Walk in 2010

But I am digressing.  I am not angry at Emma for taking her own life.  I know how a disease can turn your mind dark. I battled my own depression while I struggled to figure out what was wrong with my health. Often thinking what I had was a mental illness- that I was making it all up.  Often wondering, at least when I die here shortly, they can perform an autopsy on me and find out what I have.  Days of just sleeping on the couch during the day. Not going to work.  Not doing anything. But getting lost in my own thoughts.

I know what it's to have an autoimmune disease and the depression that can follow, and I'm angry at myself for not recognizing her internal battle.  We had meet 2 weeks prior to her death, and she shared how she wanted to be more social; that she was feeling lonely.  I encouraged her to come to more SWE events and that I'd love her help with SWE outreach activities.  She said she didn't think she could because she was no longer an engineer (she had been fired by her company months before). I said, of course you can still be a part of SWE, because why else would SWE offer retired or unemployed memberships?   We later made plans to do dinner again, and she said she'd sign up to volunteer for one of the SWE events.

I feel that I failed to really hear what she was saying. That she was lonely and that she was hurting. My anger at myself is not as large as it was in 2012, but it is still there, broken tiny pieces residing deep in my heart. Then I feel disappointment in myself for being angry- well her death isn't about you! Tsk, tsk, as I scold myself.  After all, it's about her, and what she needed.  She needed peace.

The thought of knowing she found the peace she was looking for, it breaks my anger and guilt into even smaller pieces; the thought does comfort me. Then, I am able to remember all of our good times together, the memories floating happily in my mind, and the wonderful things about our friendship are there on the surface of my heart, overshadowing the anger and guilt.  You brought me joy and happiness my dear friend Emma, and I wish you the same.

In loving memory of Emma, I'm participating in the Phoenix MS Walk on November 5, 2016.  To learn more about MS, please visit:  What to learn more about Emma?  Her blog (which to my delight, I found was still up and have enjoyed re-reading) is here:

Phoenix MS Walk 2015

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