Multiple Sclerosis and What REALLY Matters

Every single day I wake up to a new world – and it has nothing to do with my natural blonde self.  Living with multiple sclerosis is like living with most other life-altering diseases – you just do not know how you will feel from one day to the next.  I could wake up with a migraine, with spasms in my feet, with numbness or tingling in my face or hands, unable to walk, etc.  It’s a daily unknown, and we are on a constant vigil to be sure to document anything new that happens and what I am doing, eating, drinking, etc. so I can properly explain it to my list of doctors.  There has only been one day in the past 13+ months when I have not experienced dizzy spells throughout the day, and to date we still do not know if this is related to the MS or not.  There is no normal, and anyone who has MS will tell you the same.  Stress is really the biggest issue that causes the most symptoms and I try to avoid it at all costs because the symptoms usually end with me in the bed trying to recover.

The one thing I will never, ever take for granted anymore is love.  Oh my goodness, have I seen love in its rawest of forms from some of the most wonderful people even moreso since my diagnosis – some who I already knew who loved me, some who expressed it before but express it more often now and some who I had no idea even gave me a second thought.  And it’s not just love for me, it’s love for my family, too.  Love for our well being, love for all of our health and welfare.  Love just BECAUSE.

I do not remember my parents telling me they loved me.  Some may dispute this fact, but it is not in my memory bank.  I know my Gramma from Tramma loved me, as she’d say, “I love ya doll.”  I always thought I was so very special when she said that, until I heard her tell her best friend the same thing one night when I dropped her off at her favorite pub.  hehe  I have had a number of family members say they loved me, but before I truly learned what love was with my brother, I probably didn’t understand what “love” meant.  At least not unconditional love.  That was when I realized how much my love with my Gramma from Tramma meant to me, even though her love sustained me for so very long through the good, the bad and the ugly.

Now, after a nearly 20 year relationship with an extremely loving husband that has produced four amazingly loving children, I can honestly say love easily flows from my heart and lips.  It is said with emotion and comes directly from my soul.  I have no problem loving, despite shutting off my emotions in order to cope with a very difficult childhood.

My special aunt has told me I am very loyal, even if someone hurts me.  I suppose that is true, though I haven’t really thought about it much.  I will say that if I am hurt enough, I will close the door on a relationship (after some serious prayer and contemplation) without a second thought.  I do not want myself or my family involved in toxic relationships – it is not worth it to put my children in any type of hurt of that type.  It is my job as a parent to protect them, and I will do so to the best of my ability.  I do know that my children have not met many members of my extended family because I want to shelter them from my past.  It may be that those who have hurt those I care about a long time ago have changed and would not cause pain anymore, but I am not willing to put my kids in harm’s way on the chance that they will be hurt.  When they are adults, if they choose to search out the extended family, I will point them in the direction and explain how they are related to them.  My past pain is just that, in the past.  They know enough to know what happened to me and for now, all they want to do is to protect their mommy from further pain.  For now, it is the most loving thing a Mom could ask for from her children.

My third foster mother recently told me I have some of the best coping skills she has ever seen for a child who went through as much as I did.  I have to thank her family and my aunt and uncle for that, because out of all of the chaos surrounding my childhood – they were the ones who brought any semblance of normalcy to my life.  Both when I lived with them when I was growing up and a whole lot as I have continued to mature.  A counselor helped along the way, too.  And love.  Always love.  Sometimes tough love.  Sometimes distant love.  But, always love.

Today, love drives me.  Love makes me get out of bed every morning.  Love for God my Father.  Love for my family, who needs me to be the wife, the Mother, the daughter-in-law.  Love for my best friend from fourth grade, who I surprised on her birthday last July and made her cry in church because she didn’t know I was coming.  Love for my cousin, who drove me around and we got girl-time together for a whole weekend without her parental intrusion.  Love from my quilt group, who welcomed me with open arms and told me repeatedly how much they missed me since I’d been avoiding them for six months because the meetings make me dizzy.  Love for my foster mother who continues to treat me as one of her own children, even though I was but a mere placement through the foster care system.  The list goes on and on – but, there are so many who love and whom I love.  SO many with hearts and arms wide open.

Love is what makes living with MS bearable.  It is the only thing that matters in this big ole’ hard-nosed world.  I will no longer spend time on things that do not bring happiness and love to my world and my family.  I will repeat the golden rule my Gramma from Tramma tried to drill into five headstrong and independent kids:  Treat others as you want to be treated.




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    1. BJ Lyle says:

      What an amazing story!
      I always admire the way you handle the trials & struggles in your life. I know its not easy for you. Yet you go on.
      Now I can understand the driving force behind your determination.
      Pure & simply, it’s love
      Love for your husband & kids. Love for all the wonderful people who helped you survive. Love for all the other people who are there for you now.
      You may eat good foods to survive & have the best meds available but its all that love that is really helping you keep going every day.

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