Saturday, June 18, 2011

The time he was diagnosed with Multiple Sclerosis

I was going to wait awhile before I wrote about this moment in time. But as I awoke this morning, I felt a pull to do it now. Like, in this very minute. Perhaps it is because I simply need to get these emotions in writing. Or perhaps there is a greater reason. Either way, I believe in here goes.

(Hawaii 2008--a trip given to us by the MS Society)

We moved from Columbus, Georgia to Seattle.  I was 7 months pregnant.  We didn't have a job, but we felt like it was the right thing to do and on a "planned" impulse everything fell into place.  Right down to the fact that Aaron's jeep sold at our garage sale to a man looking for camping gear when we hadn't even listed it. We sold our house, paid off our car, and began our venture.  It was all meant to be and we knew it.

After we arrived we planned to stay with my mom for a few weeks.  Resumes were sent out, head hunters were contacted, interviews were set up.  We were optomistic and happy and determined to start this new chapter in our life.  Not to feel as though we were idle or unappreciative in any way, we began doing some much needed projects in my Mom's house. So while we waited, we painted and filled our days with house repairs.

One day my husband and I were spackling and painting a bedroom when he stepped on a nail.  We laughed about it a little, wondering "have you had a tetanus shot?" But because he's never one to complain about pain, he kept the fact that his foot started to feel numb until a few days later.  By then the numbness and tingling had traveled up his right leg and he began to feel dizzy and weak, so we thought, let's head to the ER to see if this nail thing when awry.

We entered the hospital and the doctors got to work on my husband who was feeling very ill.  We told them about his Gitelman Disease so there would be no surprises, and a few hours later, as my husband laid out on the bed semi-conscious, they announced that they thought he had a stroke.  He was 27 years old.  And they said they thought he had a stroke.

I ran outside the hospital and while I stood directly outside the emergency entrance I called his Mom. Coincidentally (and I don't believe there was any coincidence in this,) she was flying up in 2 days to go on an Alaskan cruise with her friends.  She bought her ticket for a few days before and after her trip so we could spend some time together.  We discussed if she should come up now, but we figured nothing more would happen in that time so her scheduled flight would be fine.

A frenzy of phone calls were then made and received. All his siblings were contacted and as much news as I had was given.  From Seattle to Georgia and many places in between prayers were being offered on our behalf.

I cried.  Sobbed, really.  And then I pulled myself together and went back inside to hold his hand.

Many tests were performed.  An MRI, Cat Scan, blood work, days filled with hospital food.  Being in a hospital was familiar in so many ways, but a stroke--that was something new. 

My mom went to pick up my mother-in-law at the airport and she came straight to the hospital.  She walked in the room and kissed her son, and not five minutes later a doctor came in and said, "It doesn't appear that it was a stroke afterall.  There are lesions on your brain and due to the tests we have concluded that you have Multiple Sclerosis."

I glanced at my Mom.  I don't think I will ever forget her face.  It was the face I had always known as a child when bad news was given.  Don't speak, don't say it, don't let people see that I know what I know.  I then glanced from my Mother-in-law to the doctor and in a haze someone asked, "are you sure? are you absolutely sure?" I looked at Aaron.  His face was stone. Like the air was sucked right out of him.  I didn't know what this meant, but he did.

I didn't know what this meant.

I don't think anyone believed the doctor in that moment.  We had to hold on to some sort of hope, but she was cold and calloused at the diagnoses.  So matter of fact.  So uncaring.  So by the book.  "All the tests lead to this conclusion" she said.  "We'll have to do a lumbar test but I am sure it will still lead to the same diagnosis." I wanted her to leave right then.  I hated her.

I don't remember much after that.  I think I remember talking to someone about what it meant.  How there is no cure.  How the numbness might never go away.  How someday he might not be able to walk ever again.  How it could deteriorate his body.  How we were so lucky that we caught it so soon so medicine might slow down the progress.

My baby kicked inside of me waking me back up to reality.  The kicks hurt.  It all hurt so so bad.

There is no cure there is no cure there is no cure.  It was like his kidney disease.  Only so much worse.  He might not be able to walk.  Provide for our family. Be, well, who he wanted to be. The dark unknown was just that...dark.

But let me write something else.  Something that I feel in moments like these dissipated all fear.  I felt the prayers of everyone who knew.  The pleas on our behalf, the fasting, the healing thoughts coming our way. I felt a warm blanket that comforted my soul.  I knew that God was aware. 

I knew that it was no coincidence that his Mother had arrived from across the country five minutes before the diagnoses was given. I knew that it was no coincidence that we just moved to a city with some of the best MS doctors in the country (Seattle has the highest rate of MS patients in the USA).  I knew that it was no coincidence that he didn't have a job so he would be allowed to heal without the pressure to return to work.  I knew it was no coincidence that I could not get pregnant for an entire year.  And Oh My God...literally, thank my Heavenly Father that I did not have a baby outside of my womb in that moment.  I would not be able to cope if I had more than my 3 year old to physically care for right then.  I would not.

It was timing. It was and is still a painful reality, but it was timing.

And I will never forget that. 

He is good right now.  He is in grad school and walks and plays with our children like nothing is wrong. No one would ever guess he has such a horrible disease.  We have had numerous moments where the reality sinks in more than others, but we get through those too.  It has been very therapeutic for me to write down my experiences as they happen here.  And we move forward.

Don't feel sorry for us.  Don't feel sorry for him.  Don't think that we are strong or resilient or brave. It has taken so much time to heal emotionally and physically in these 6 years, but as awful a reality as it is, his diagnosis has healed our hearts and stengthened our faith with the unknown. And I believe, I truly truly believe, it always will.


Susan Anderson said...

This is a beautiful story you have to tell, despite its being about your husband's MS. Or maybe because of it. Perhaps it takes a great trial for faith to shine as brightly as yours does.

Thanks for sharing this.


NatureGirl said...

As usual Thank you for sharing such tender things with us. This is a story of faith and hope, not of despair...I will not feel sorry, only blessed to have heard it.

Bridget said...

Thank you for sharing. I, too, have felt the need to write about some old times. I haven't gotten around to it, yet. But hopefully will later today or in the next day or two. Good for you for getting it down now. Journaling can seriously show us how much of God's hand is in our lives.

Amy said...

Alot of the feelings you spoke of as you've had to grieve, accept, and heal from the horrors of Aaron's diagnosis we're similar to when we lost Ella. The coincidences, the extra emotional boosts, the prayers, the support--it is truly remarkable. I firmly believe that those who face such acute suffering as you have will own a greater understanding of the atonement in this mortal life and one day enjoy a greater reward of freedom, peace, joy and ultimate relief in the life to come. I wish I could give you a big hug! I know i've said that before, but I wish it again today. Love you, girl!

Jenny P. said...

I absolutely cannot wait to hug your neck.

Thanks so much for sharing, Carrie. Really, truly.

Jen @ Dear Mommy Brain said...

I was diagnosed with MS 7 years ago and can empathize with your story. It took me a long time to accept my disease and not let it define me. And while I am reminded every week when it's injection time, most of the time I forget it's even there. I agree that everything happens for a reason, and living with autoimmune diseases has taught me so many valuable lessons.

Charlotte said...

It doesn't seem fair. Shouldn't incurable diseases be passed out evenly instead of heaping on one person? I'm impressed with the grace with which you tell your story. Impressive.

Liz said...

This was really beautiful to read, Carrie. You are so strong. Your faith and strength are palpable. Thank you for sharing this.

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