Posted by: jenn11970 | February 20, 2008

Reality checks in

My husband has Multiple Sclerosis. MS is an autoimmune disorder that effects different people in different ways. It is translated from the Latin to the loose meaning of “Multiple Scarring.” Scarring can be on the brain itself, like in DH’s case, or on the spinal cord itself. Basically the body is attacking itself and eating away at the precious myelin that surrounds the nerve endings and allows the communication from the brain to tell parts of your body what it needs to do. These scars make it difficult for the messages to jump the gaps between nerve endings, and can send out mixed messages, or no message at all. DH has to think about walking, and consciously “try” to take steps with the help of crutches. Multiple can also reference the differing symptoms associated with the disease. My husband was diagnosed in February of 1995, 9 months before our wedding. A wedding we had been planning since January of 1994. He graciously gave me what I call “the option out”, and needless to say, he is now stuck with me. He was originally diagnosed with relapsing-remitting, meaning he would have a flare up, and then it would go away and he would be a little weaker, but okay. He has since moved into the secondary progressive phase in last 4 years. He is NOT going to die from this, but his life, our life, has gone through a lot of changes. One of those took place Tuesday.

Hubby has used a cane for a few years, and last year I finally got him to buy hand crutches. You know, the medicinally ugly stainless steel crutches that wrap at your forearm and has a bar to hold onto and put your full weight on. He has also used a wheelchair at home or for shopping, but he refused to use it at work. That ended after his Dad was killed in a car accident on October. He also finally asked me for the information I had gathered on putting hand controls in his car. He is very weak in his lower limbs and hand controls would really put my mid at ease for his 5 mile drive to and from work daily. Tuesday we had a visit from Vocational Rehab to have him fitted for a motorized wheelchair and to have a look around our home to make it more handicap accessible.

Reality checked in with me on Tuesday. In my mind I was always sure this day would arrive, always later, not sooner. I always knew we would get through it like we always do, with a smile on our faces, and hope still in our hearts that a cure was just around the corner, so we wouldn’t really need any of the things that people with “real” handicaps needed. In my mind, as long as he takes his meds to keep from being too stiff, his meds for balance, his meds for pain, his meds for being able to not feel like he had to go to the bathroom every 15 minutes, his meds, his 2 years of quarterly chemotherapy, all the crap we had to do with physical therapy….. it would keep us from the “real” handicap needs. Nope. We had to pick out a wheelchair on Tuesday. We got a consultation on putting a ramp in our garage, widening our interior doorways, and horror of all horrors, modifications to my minivan to put in a ramp and hand controls. They need o modify my master bath to put in a shower he can wheel into with a shower chair. He doesn’t need some of this now, but they look 5 years down the road. My reality doesn’t go that far. Honestly it is just too terrifying for my mind to go that far out.

I cried like a baby after the guy left and after DH had gone to work. I didn’t cry for me, I cried for my football player, my rugby playing, weight-lifting man I haven’t been able to dance with at weddings for the last 4 years, who may end up in a motorized wheelchair. I cried for his scary reality, knowing that neither of us will let the other know how scared we are because we love each too much to admit it out loud. Instead we will know by looking each other in the eyes, hugging each other tightly, smiling, with the joke going unspoken. Tuesday I cried. When the chair gets here……WE will fight over who gets to try it out first. I know I will win. Let’s face it….. I am at an extreme advantage when it comes to foot races!!

Reality will have checked in, but only as a guest. We will create a happier reality for keeps.

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Responses

  1. Oh Honey, *hugs* and prayers for both of you. What a reality you have in front of you, but what grace and love you have and are sharing throughout.

  2. as your previous post was titled….THIS HURT ME…..the thought that you cried, alone, with out a friend to hold you…the thought of all the thoughts that went through your head that day….THIS HURT ME….

    this made me feel better for you…the degree of go-get-it-ness that you have…the willingness to see the better and to get beyond…

    Dang when you say you have had some things going on you mean it…..I am sorry if I add to that pressure…

    Your writing here is sooo deep and inspiring…I am so glad that we are friends…please call me is yo need me OK.

  3. Thanks Deb. We knew about the meeting for 2 weeks, but I think the really yucky stuff doesn’t set in ’till you are in the moment. Sometimes the cry you have alone is the BEST cry ever. I actually felt much better after it. I am doing much better, I swear. I guess I should say…WE are both doing well.

    Don’t worry, I have your number in my kitchen!!! I came pretty close the other day. ; )

    You are so sweet. I tell ya, this blogging thing has helped me unload sooooo much JUNK!!!!!
    LOL!!

  4. Oh Jenn…


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