In the beginning....part 1

After years of talking to many people about MS and sharing everything I have learned from it I thought this would be a good venue to share it with everyone.  I am a graphic designer and writing is not my really my best strength.  So, knowing that please forgive me for any grammar errors.  :)

Having a wife with Multiple Sclerosis is not for the faint of heart.  The challenges MS presents are enormous. The physical, emotional and psychological issues come in all kinds of forms.  My 17 years with this awesome women have taught me a lot.  First of all Jennifer is a FIGHTER.  Her will to fight everything MS throws at her, keeping her chin up and staying positive is beyond inspirational.  She does have her days of feeling down and somewhat defeated, but she always snaps out of it pretty quickly and marches forward.  When she is feeling down she feels guilty and says she's having a self "pitty party".  My response has been consistent.  I tell her that you are in a war with your body everyday and the war will wear you down at times and it's okay to feel down.  It is part of the having MS and being human.

Here is a brief recap of our experience with MS.  I plan to expand on all areas of it in future posts.  Not long after we met and started dating Jenn told me that she has Multiple Sclerosis.  This was huge for her.  She thought I would run away from her like my hair was on fire.  Truth be told I knew nothing about MS.  She was 22 at the time and at that time was deemed "young" by her neurologist to have MS.  At the time she was not symptomatic and I didn't really think too much of it.  My thought was she may never have anything come of her MS or if she does I'll be right there with her.  Being newly diagnosed she was scared of what the future looking like for her health.  I said "you can't change the future, be happy right now and if anything come up we'll deal with it then".  For my marriage proposal to Jenn I wrote it.  I am not the best (understatement) at expressing my feelings verbally.  Guys, you get that....well some do.  Anyhow, in my proposal I wrote "I am not marrying a disease, I am marring a beautiful woman".  I stand behind that statement forever.

Two years into our marriage she began to have symptoms.  It started out very slowly but consistently grew over time.  Her fingers became "tingly" and her foot started loosing feeling.  Her stamina was slowing down.  The stuff she used to do with no problem was starting to wipe her out.  Jennifer began to worry about these symptoms.  At first, I started to worry.  Then I came to the realization that my worrying is not helping me or her.  God is in control of this.  Once I came to this conclusion I let it go from worry and vowed to deal with stuff as it happened and to just love and support her.  This proved to be a good choice.  I have met many people who worry all the time about their spouse, family or friend with MS.  It effects them negatively and most likely the person with MS.  To me the best approach is to look that person in the eye and tell them with great confidence "whatever happens to your health because of MS I will always be here to support you".  For the MS fighter those are encouraging words.

As her symptoms continued her foot was becoming completely numb and the "tingles" have expanded from her hand to her arm.  Her right hand (same one with the "tingles") had begun to have small tremors.  At the time we both worked in banking.  She worked in internet lending departing processing loan requests and I was a branch manager.  Her job required great attention to detail and to be highly organized.  This was a perfect fit for her.  Jennifer was both detailed oriented and very organized.  As her symptoms continued her cognitive skills started being affected.  Her memory (which had been rock solid) was having issues.  Her worry was now turning into frustration.  She knew that this MonSter was starting to really fight her.  It was starting make issues for her at work.  Not remembering where a particular file was or if she had already completed a task or not.  Through all of this she stayed determined and she thought to herself "this is just temporary and it will pass".

Fast forward 4 months.  Her numb foot was turning into a numb leg and this made her start to have a small limp.  Not too noticeable to most but I saw it right away.  When I asked about it she quickly dismissed it said she really didn't want to talk about it.  I didn't push it.  At this time she wanted nothing to do with talking about her MS.  She felt like by doing so she was giving it power and being a burden to me.  It was not true, but I let her continue to not talk about and only occasionally bring things up about her MS.  I kept a mental journal of her health and what benchmarks where made.  Her eyesight (which was 20/20) started to weaken.  Then, her left eye started to lose sight.  At this point she became worried about driving herself to work.  So, I started taking her to work early in the morning and would use my lunch hour to race (literally broke many speeding laws) to pick her up and take her home.  She ended up loosing complete site in her left eye.  This scared her to death.  Mainly at the possibility it could be both eyes and that she would never see again.  We did research on it and found that it has a name "optic neuritis".  The definition we found said:  Optic neuritis is inflammation of the optic nerve.  It may cause sudden, reduced vision in the affected eye.  After reading up on it we where relieved to know that this was very likely just a temporary issue.  Her site returned about 6 weeks later and she returned to driving herself to work.

Jennifer's limp was getting worse and her balance was going just as quick.  I brought up the idea of using a cane.  She looked at me like I was a crazy person.  She said "no way, canes are for old people".  I quickly jumped in on that statement and said "no, canes are for those who need them regardless of age".  I made a special point when we went to the store or wherever to point out "younger" people using a cane.  The health insurance we had covered the cost of the cane.  I called to make sure it did just to avert the "we can't afford one" objection if it came up.  A few weeks later after much resistance she agreed to get a cane.  We had a medical supply store not too far from our house we went to get her measured and buy one.  By the way if you have to get a cane I would highly recommend going to a place that specializes in medical equipment to have them measure you for the correct height of your cane.  It will make a big difference in the way you use it.  We get in the store, get the measurements and the store employee was showing her how to properly walk with a cane.  Then......the dam broke and the tears came flowing out of her.  She quickly dismissed herself and went to the car.  I told the employee to please hold onto the cane and I would be back.  I went to the car to talk to her.  She said "I can't do it.  I can't get the cane because it means I have given up".  I said "no, you are simply using a resource that will help you.  We'll just pray it isn't for a long time".  After a few minutes more of talking she agreed to let me go back in and purchase the cane.  

Now Jenn and I and the cane are back at home.  She is still crying and very upset about the cane.  To Jenn this was a turning point in her fight with MS.  I asked her to try the cane out.  She shut all the curtains in the house so nobody could see her using a cane and proceeded to try it out.  She agreed that it helps.  However, she said "I'm only using this at home and don't tell anyone I have a cane".  I agreed not to say anything.  By using it in the house she quickly adapted to it and became very smooth and efficient walking with it.  A few weeks later we went to Target to do a small shopping run.  I asked her to bring her cane.  She did.  Then when we got to the store she insisted on leaving it in the car and if she by chance needed it she would have me go get it for her.  Fine, I'll do that.  I realized the cane was not a physical issue because it clearly helped her it was an emotional one and I had to be aware and let her do this on her time.  This became my "way" with Jenn in regards to her MS.  I let her for the most part dictate how she wanted to treat it.  The only time I stepped in and said anything was when I knew it was dangerous or she would be exhausted for a looooong time after she finished.  She did it.  Jenn finished the short trip to Target without using her cane!  Now to go home so she can recover for 3 hours.  

A couple of months later Jenn started taking her cane everywhere (but work).  When we went to the store she discovered her new best friend......the shopping cart.  The shopping cart provided a way to have something to lean on and assist her walking.  When we arrived at a store she typically dumped her cane into the shopping cart and off we went.  She still did not like the cane and one day said people would stare at her when she used it.  I said "of course people stare, your a young attractive women using a cane and that is different".  I found a tee shirt that I fell in love with for her.  I thought I would take her to the store and surprise her with it.  We are at the store and I found the shirt and I hold it up for her to look at and I said "this is for the people who stare at you when using your cane!".  She loved it!  The shirt had a stick figure on it and said "Keep staring I might do a trick".  The times she wore the shirt out in public people would read it and quickly look away.  It really worked!  I am going to make this shirt but it will be for the MS fighters.

Another couple of months have passed Jenn finally decides that she can't make it to her desk from her car at work without her cane.  However, she went to work extra early to make she was the first one there so nobody saw her using the cane.  Once at work she would stuff the cane under her desk and out of site and would not get up from her desk the rest of the day and would wait until everyone left work before she would leave.  When she told me that she didn't get up from her desk all day I asked the obvious question "what about going to the bathroom?" she said "I hold it" and I thought about that for a second and responded "you realize that is horrible for your health to hold it that long!".  She agreed but still continued to do it.  

This ends part one.  Part two will come next week.  It will start with the dreaded handicap parking permit!

Thanks for reading,

-Brent
  
Reject Defeat