MS is AWKWARD #MSAWARENESS

This is MS awareness month.  Although I am THE HUSBAND and do not physically struggle with MS, I have found that navigating these new waters of the Multiple Sclerosis disease has been a little AWKWARD.   I recognize AWKWARDNESS easily because my occupation as the Middle School Pastor at Oakwood Church in New Braunfels, TX unleashes many moments of AWKWARDNESS in my daily life.  (That is a completely different subject in itself)  However, this AWKWARDNESS is on a whole new playing field for our family.

WHAT IS MS?

Changes ARE AWKWARD – How are you doing on those New Year’s Resolutions?  If you feel like a failure, don’t worry, ANY CHANGE IS AWKWARD.  Imagine having to stick to those resolutions in order to survive!  That’s Intense!  One term we have discovered on this new journey in life is “New NORMAL.” In order to have a good quality of life, we have to insert the “new normal” phrase into the routine now.  In the first year of the onset of this disease Laura is daily taking four to five medications that include daily shots of Copaxone.  It is awkward enough to have to take meds for a sickness that ends up going away.  (Imagine having to commit to a daily regimen that doesn’t go away and has many side effects.)  She is committed to a Gluten Free Diet by a Dr. Ordered Wholistic Approach.  Fatigue gives way to daily, spontaneous bouts with energy and crashing in the midst of our daily routine (with two kids I might add!).  With new diet comes new groceries and an overwhelming feeling at HEB for Laura (so guess who goes to the grocery store now…do you see the guy in the picture above?  Do I look like I am an ALL NATURAL GLUTEN FREE DIET LOVER?).  Many big and small changes to our daily lives can be VERY AWKWARD.

 The Subject of MS is AWKWARD – Debbie Downer seems to find the perfect moments at parties to put just enough of a spin on life to kill the life of the party.  This Silent Disease is something that we deal with, battle weird side effects, and hash out as a family on a daily basis, but don’t really want to bring up all the time and be that Debbie Downer.  We know that the SUBJECT IS AWKWARD.  We also realize that God allowed this to happen at a time that could be the BEST TIME to find a cure.  One of the first thoughts relayed to us during the diagnosis was that 20 years ago would have been way different than today in terms of Medical Advances.  The subject of a Disease without a cure, but not as detrimental or even broadcasted as much as cancer and other life altering diseases can be tough to explain.  We get the “oh, you’re not going to die, so you will be okay” statement and feel dismissed.  The fact that we must realize is that this AWKWARD SUBJECT that we live with now is still a FAMILY CRISIS and STRUGGLE as we move to a “New Normal.”  We need our friends and family to talk and encourage us, now more than ever.  (So, who wants to hear about some new Nervous System terms I have learned lately?…)

Misunderstandings in the MS GAME are AWKWARD –  Living out the AWKWARD CHANGES and talking about the AWKWARD SUBJECT leads to AWKWARD MISUNDERSTANDINGS.  Many things are happening on the inside and it is hard to translate it all in a five minute or cordial 30 second conversation.

For Example:

Person 1: “Hey, you really sound like a health nut.”

Laura wants to say:  “I have MS and I am committed to a wholistic approach to battling the demyelination of the outer sheath of my Spinal Cord.  If I don’t eat right, my nervous system gets all out of whack and I feel tingling and sometimes burning on the inside.”

Laura really says: “I am on a strict diet”

Person 2: “Man, you slept through the whole dinner!”

Laura wants to say: “I have MS and my immune system is working overtime because it is fighting it’s own body and now fighting tons of drugs I just put in me today, so on top of my normal work stress, normal sickness and allergies, family kid stress and periodic husband stress, my body is naturally crashing in order to keep me alive.”

Laura really says:  “I am just really tired from the day.”

Person 3: “Wow, you look great.”

Laura wants to say: “I know I do!” Then she wants to say, “Since the diagnosis of MS, I have been on medications that don’t make me feel very well.  I have been nauseated most nights and early mornings, then I have to eat new foods with this Gluten Free diet. Sometimes I go to events that don’t offer the foods I need, so I don’t eat at my normal time and then feel sick to my stomach and miss a meal.”

Laura really says: “Thank You” (with a smile.)

Needless to say, that is just the surface of the awkwardness of misunderstandings.  In the struggle and vocalization of MS, others might MISUNDERSTAND that we are super grateful for where God has placed us.  We are in the beautiful Hill Country of Texas.  We have two amazing kids.  We get to have our parents living nearby.  On top of all that, we see Jesus do amazing things in our community through the people at Oakwood Church, and we have felt that love on a whole new level since August.

Here is something that I have written in my digital journal about how my personal faith mixes with this personal family crisis.

Personal Faith:

I believe God is Healer.  His creation of mankind is GOOD.  All disease and other physical ailments come from the direct or indirect effects of the fall of man in the Garden of Eden.  Sin separates us from God, intervenes with the Good Creation, and ultimately reminds us that we are not yet living in the New Heavens and New Earth.

With that FAITH, I believe:

1. God in His infinite power can heal Laura instantly if He chooses to.

2. God will use this disease to grow Laura’s faith and mine as well (not to mention our family and extended family)

3. God can also heal, redeem, and refine on a longer than “instant” timescale.

4. I must TRUST in God, no matter what, and seek His Wisdom and understanding in this personal struggle as a Child of God, Husband, Father, and Ministry Leader.

If anyone would like to KNOW how I KNOW JESUS and talk about that amazing Journey as well, I am always willing to have a conversation.