Relax it Through
Life. It's a long & winding road. If you are lucky, it is long & healthy & you can share it with people you love. I have outlived my dad & my younger brother by many years & I'm "only" 51. Sometimes I feel like my life is sorta like a jigsaw puzzle with a couple of pieces missing...permanently. Those pieces can't be replaced, but I can see that they are missing. You don't know for sure what the puzzle would look like if all of the pieces were in place, but the incomplete jigsaw is the new reality. We all have some concept of what we can & cannot control, but life's losses really clarify things. I know that I can't control the challenges that I will have to face in this life, but I can choose to experience life, & loss with grace. I will fill up that empty space with faith, hope & humor. I will continue to listen for God's voice with anticipation knowing that he will not let me down.
Overnight, your health can take a permanent turn. An illness can leave you changed & facing life with new challenges. My life changer happenned in February of 2009 as my 25th wedding anniversary approached. I woke up, swung my feet off the bed only to realize that I did not feel them hit the floor. I've never been one to easily panic. In fact, I can be a little slow to take things in. I like to think that is because I generally operate with a certain amount of hope & faith, so I don't expect things to go seriously wrong & I trust myself to deal with life's ups and downs. After several moments of waiting for that tingly feeling to start when your foot has fallen asleep & the sensation begins to come back, I realized that my feet were not asleep, but WTF was going on?
I went to the tub & ran my hands under the water until is was warm, sat down & then watched my feet go under the rushing water. I watched them go under & sat staring as I realized that I did not feel a thing....not the water rushing over, not the warmth of the water......absolutely nothing. "OK, this is weird, but I really need to get to work because my boss is leaving for China tomorrow & I need to finish the presentation for her", and so I finished my work week, packed up the presentation the next night & headed home for the weekend. Thoughts I was having on my way home..."If this keeps up I'll go to the urgent care clinic this weekend. I sure hope this goes away, cuz we've got our anniversary trip planned & paid for & nothing is going to get in the way of that. I'm not sure I should be driving because I can't feel my feet on the pedals. Its hard to walk when you can't feel your feet. Wow, I can wear all my uncomfortable shoes again!" Next, I headed into the house, sat down & I didn't feel my rear end hit the chair. "OK, that's officially a problem. I will go to the urgent care tomorrow morning."
The next six weeks were unbelievable. Monday morning my doctor stood eye to eye with me and said, "I think your brain is involved" & sent off a request for an emergency brain MRI. Unable to completely take it all in, my main concern was still on the upcoming anniversary trip to Napa & Mauii that Kirk & I had been looking forward to for the past year. So, I made it my mission to get that MRI right away, because we were leaving for our trip in 6 days. On Wednesday, I picked up the phone to find out about the status of my MRI & had a conversation with my doctor's office assistant that I will never forget. I got up from my desk at work and shut my office door for the first time ever, anticipating the words I was about to say. "What do you mean, the MRI request will take a week to process? I can't feel my ass!!!!" Apparently, ass numbness is considered an emergency. One hour later she called me back & the MRI was scheduled for the next day.
My neurologist opened her office to see me on the Saturday before our trip & told me that I had Transverse Myelitis & that it was basically Multiple Sclerosis, wrote it down & told me to look up info on the internet about it. She said to go ahead & go on the trip, but don't overdo it. She would have ordered high doses of intravenous steroids, but since I was going to be leaving town, she gave me a oral dose of steroids to take during the trip instead. Little did we know at the time, that she was operating on the assumption that my attack had already peaked.
First stop on our trip was Santa Monica. We were planning to hit all of the places we had celebrated our anniversarys over the past 25 years, mostly CA destinations. I woke up with slightly more numbness moving up my legs, so we went on a short walk up the peer. I was hanging on to Kirk's arm & starting to get a little more scared about the whole situation. Fatigue was starting to set in & would gradually get worse every day for the next 5 weeks. Each day the numbness had risen a little higher up my legs. Strangely, my feet & hips were completely numb but the area from ankle to hip was not. Each day it was like I could take a marker & draw a line a little higher up on my legs as the numbness continued to rise.
By the time we flew to Hawaii, the numbness had risen to knee level, and walking was very hard. I decided to see if I could find a book about Transverse Myelitis on the internet. The title of the book I found was a bit of a shocker, How I Woke Up One Morning & Never Walked Again. My reaction, and I am not kidding, was to laugh hysterically for about an hour. Even Kirk was laughing. This was just unreal. Was this really happening to me?
As we made our way through the airport for our return home, I was embarrassed & worried as I clung to Kirk that people may think that I was drunk. This was all so new to both of us, & even he forgot from time to time that I needed to hang on to him as we made our way through the airport. I remember watching him walk away & wondering if I should try to step forward without him to hang on to. Would I fall down? Surely he is going to remember & turn around to look for me, & sure enough 20 yards ahead he turned & ran back to me. This was one of the first moments where I realized that this illness I am experiencing is invisible. I look normal & you can't see what I have lost. Am I in this alone?
As we stood at the doorway, about to enter the plane, I stared at the empty wheelchair parked there & it occurred to me that I am on the threshold of losing my independence. If this continues, I will not be able to walk. As usual, there is some part of this thought that does not really penetrate completely, and I do not sink into panic mode. I just can't believe that I could lose the ability to walk.
After we returned home, things continued to get worse, and I realized that I was going to have to become my own advocate in seeking medical help. My neurologist ordered another MRI of my spine & saw that I had a lesion at the T9 level of my spinal cord that lit up like a light bulb on the MRI. It was actively inflamed & continuing its assault. FIve weeks into the attack, I finally started a series of intravenous steriods at the highest dose possible for 3 days. A few days later, it finally seemed to stop getting worse.
I was able to take another week off work after returning from our trip. My interior design job was part time due to all of the building project cancellations. I was managing the owner of the company's finances for her,as well, along with her rental properties, and she relied on me to run daily errands all over town. Kirk was driving me to & from work & I was no longer able to run errands. Struggling to walk, I knew that my boss would probably start to look at alternatives to replace me, and within a few more weeks, she laid me off. I was discouraged to lose my job, but I really wanted to focus on getting my strength back & my recovery so it was a welcome break.
Over the next several months, feeling gradually began to creep back into my legs. One day all of the feeling came back in my waist & hips. I was able to start to exercise & decided to sign up for a 6 week boot camp. I told my trainer that I was recovering from TM & that I had no feeling in my feet & got the first of many blank stares in response. It seems that most people are not familiar with TM, and it is relatively rare, so it just doesn't register that you have anything wrong when they see you walking around normally. It's relatively invisible. I have a limp sometimes due to the stiffness, but most people don't seem to notice.
My strength continued to improve. It was not all uphill. Sometimes the numbness would get worse, and then recede again, but eventually I was able to jog again & decided that I would train for the Huntington Beach half marathon as motivation. As time moved forward, I increased my distance & found that I could rely on myself to persevere through the pain, & to keep pushing through all of the odd sensations that the spinal lesion was causing.
Fast forward a couple of years. I have experienced many ups and downs of my illness. I have tried 3 MS therapies, 2 rounds of intravenous steroids, a spinal tap & many MRIs & have searched for the best neurologists to help clarify the diagnosis & choose the right treaments. I have permanent damage related to the lesion on my spinal cord. Having seen an MS specialist, the MS diagnosis is now in question. I may have had one or more episodes of TM, but time will tell how things are going to evolve. Currently, I recieve an MRI every 6 months to make sure the autoimmune illness will not creep up on me unknown. I have run 2 more half marathons & 1 marathon.
In times of discouragement God is with me and he makes His presence known. Out on a run.....I start out with a great deal of stiffness....my right leg doesn't seem to understand that I expect cooperation. I have lost feeling in my feet & have muscle stiffness that I have to fight through. Self doubt creeps in & my inner voice starts to remind me that I am handicapped. I have lost feeling & strength in parts of my legs. The sensation is hard to explain....its a heavy & disconnected feeling as though I'm wearing a rubber suit over my legs. This loss is real, & will affect me for the rest of my life. Then, I hear that voice break through & jolt me from my sinking thoughts....& it repeats.... "Relax it through, Keck!!" At the point where I first heard those words ring out, I was a gymnast & record breaking miler on my high school track team. My coach would yell out & remind me to stay loose, to recognize that I can control my body's reaction to being pushed to the limits. I could shift my focus & I become aware of the possibilities. I can focus on the here & now. I can refuse to focus on the pain & focus on the moment & my ability to relax myself through it.
"Relax it through." I shift my focus. I can breathe deeply & continue. I can focus on the here & now. Breathe. Breathe. Stay in the moment. Breathe. Suddenly, possibilities change. I can keep going. My legs will keep going. I can manage this moment. This moment is manageable. I can manage this moment. Thank you, God.
